This sounds like a fairly major discovery if it pans out, Diabetes breakthrough: Toronto scientists cure disease in mice.
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Thanks! I have been shopping this around the holiday partys. The SF mid pen area is a hot bed of medical organizations and connected people. Hope it has a basis.
This sounds great on the surface, but how many years, decades until this gets into human trials.
There are literally hundrends of “cures” that work in the NOD mouse. So far none of these have proven effective in humans.
When will there be a cure for Type I diabetes? When will the suffereing end?
Makes me wonder why we bother with the mice. Perhaps we should cage big pharmaceutical company executives and use them for experiments. I’d love to see them function without islet cells. At least we’d get an idea of what a particular treatment would do in a human model AND an executive would, for a change, earn their keep. No need for golden parachutes either.
I’ve been a Type 1 for 27 years and I have to take over 15 shots of various medications a day (two different types of insulin and pramelitide) and test my blood sugar at least ten times a day. I also have the joy of playing Russian Roulette behind the wheel of my car to see if I can get home in the evenings from my job without a hypoglycemic attack. Fun, fun fun. Insurance won’t pay for a pump (and it’s $8,000 I don’t have to buy one outright, not to mention the tubing, the disposable needles attached to the tubing and so on). This disease has robbed me of many, many things over time and the one of the first things to go was my idealism regarding those who are supposed to be helping us.
A cure? And end to suffering? Don’t make me bloody laugh.
I’m not talking about doctors – their hands have been cuffed by insurers, cost management programs and a crippling fear of litigation. I’m talking about the people creating the therapies – the drug companies.
Pharmaceutical companies, at least the big ones, don’t really want to end your suffering, kiddo. They SAY they do (or at least, their TV ads to, what with all of those smiling people who look as if they are either in the middle of some dazzling scientific breakthrough or who look as if they’ve just been cured by the laying of hands and are running around without a care in the world). But really…They aren’t even honestly looking for one… not seriously anyway. They could care less. What they really want is the next Viagra or the next Rogaine, because impotent, balding middle aged men earn more and can pay more in drug costs than five-year-old children with Type 1 diabetes.
While there IS research going on at major hospitals and universities, you have to have investment in order to turn any of these discoveries into anything useable. Cold, hard cash. If there was a cheap and easy cure for Type 1 diabetes, pharmaceutical companies and others with a financial stake in making insulin and medication for Type 1’s wouldn’t be able to make any more money off us. Or rather, they would lose the ability to bill the government and insurers for the true cost of our needles, our insulin, our pumps and a whole range of pills to treat the inevitable symptoms of hyperglycemia, etc. So there is really no motivation for Big Pharma to shell out investment money if it deprives them, in the long term, of customers.
If I seem deeply cynical, I am. I expect to die with this disease for no other reason than the fact that so many potential forms of treatment (in the time i have had this nightmare) have either been discredited by repeated testing (islet cell transplants), are relegated to other countries (namely Canada, Great Britain and Australia) or have no government funding (stem cell research) and must scrounge for capital. I’ve watched my father lose an eye, a toe to amputation, his sense of balance to a series of diabetes related strokes in his late 40’s and his overall health because of Type 1 diabetes. He’s 62 now, has had it for over 40 years and he looks like a 90 year-old man. My stepfather’s late wife died of this at the age of 32, after she had a miscarriage and a heart attack. I was diagnosed in 1980 and my mother was told that if I was lucky, I’d see my 25th birthday. All the while, every doctor and endocrinologist I’ve seen has either told me “Well, we’re working on it, try to be patient.” or “Hey, a cure is just around the corner – we’re really close”.
Yeah, yeah… hot pepper compounds… sure. Whatever. Last year it was rogue spleen cells, the year after that, islet transplants. The list goes on and on and on. And of course, there is always the Holy Grail of Stem Cell Research, which is supposed to cure EVERYTHING, including baldness and athletes foot if given the chance, which the fundies won’t let happen (more bad PR that pharmaceutical companies don’t want to deal with, hence the lack of investment). Pardon me if I fail get all quivery and excited about this latest discovery. Yippee, wahoo… wake me when you have something tangible to report, you know, something that changes the color of the non-alcoholic beer in my mug. I also fail to see how knowing about the role of the nerves around the islet cells will help, since developing therapies using nerve cells is also in its infancy. ‘But it will help someday’ I hear people say. In my book, someday = never. I don’t doubt that there are well meaning, small pharmaceutical companies, probably founded by those with children or family members who are afflicted who are trying and have a more altruistic intent to their research, but in the end, those companies will be bought out by the big boys and whatever treatment they were working on will be warehoused because bringing a real cure to the table using the data wouldn’t hold up under a cost-benefit analysis. The world of business abhors risk and biomedical companies are some of the riskiest ventures around. As we all know, large pharmaceutical companies are first and foremost businesses, not charities (it’s in the fine print attached to their annual shareholder statements). They won’t do anything unless they’re sure that they’ll make their investment money back and then some. They also need to make sure that what they’re developing doesn’t kill anyone, which means even more cash that they have to lay out for testing. Their lack of enthusiasm for finding a cure is understandable… as the Hollywood mob bosses would say “It’s not personal… it’s just business”.
Most diabetics, statistically, are Type 2’s, which in many cases is entirely preventable by getting exercise and eating something other than fried food, fast food and Ding Dongs (what several of my college friends subsited on – four now have Type 2 diabetes). Not to downplay the Type 2 diabetes epidemic, but I see pharmaceutical companies spending more time developing new drugs to feed Type 2’s, simply because it’s easier and cheaper to come up with another way to package metformin or combine it with something else than it is investing in stem cell or gene therapy treatments. I can guarantee you that coming up with a solid cure for Type 1 diabetics (who tend to disappear from the fundraising literature as we age, unless we’re some kind of twenty-something athlete or famous – we’re just not cute enough to bring in fundraising dollars after the age of thirty I guess) will be much much more costly (because there are fewer of us) with less of a guarantee of any returns. And speaking of returns, insurers (who are a whole ‘nother group of executives which will find themselves surprised at where they end up after sloughing off the old mortal coil) are less likely to want to foot any bills for experimental treatments, even if, in the long run, it meant a cure for Type 1 diabetes. They are also less likely to want to deal with involving children in any kind of testing to find out why Type 1 strikes the under-40 populaiton disproportionately. Lawyers, you know.
Which brings us back to the NOD mice. Safe to use if you want to appear you’re doing something useful without going through the trouble of finding and approving human trials. Lucky little buggers. Even if the ultimate fate for these guys is the dissection table after some experimental therapy normalizes them, at least they get to experience life without Type 1 diabetes. The same cannot be said for Type 1 humans. So you dump money that you can’t really spare (gee, insurance and medical costs are high for Type 1’s, especially if you want to try to stave off the blindness and the kidney failrure and the neuropathy) on the various JDRF funds because they seem to be the only group that gives a rat’s… well you know, about this form of the disease. As you get older and the complications begin and with no cure in sight, you try not to care too much about discoveries in mice because they don’t translate into anything for you, just funding and grants for the pharmaceutical companies and the universities conducting the research.
And in the end you just stop believing you will ever see a cure, because for every promising discovery there is an overwhelmingly massive YAWN from the pharmaceutical industry as its executives cash in their stock options and count their millions made from selling us ‘ways to manage your diabetes’. Manage our diabetes? Hah. They will manage us into our graves. After conveniently draining our bank accounts.
I dare, DARE any of the supposed biotech hotshot entrepeneurs out there to dispute ANY of this. Prove me wrong – I double-dog dare you. There is money to be made by pharmaceutical companies in keeping us sick, and so we remain diabetic. And overwhelmingly cynical regarding an ‘end to our suffering’.
Dear CJC, I love what you wrote and I hate what you wrote … because it’s all so true. My daughter got T1D aged 4. The look on her face after she came home from hospital and she saw me get the injection needle out at lunch time is a look that will always haunt me. She aged 20 years in that one moment. She realized that these injections weren’t just while she was in hospital for 10 days, it’s for life. I feel like I’ve been hurting my child 6 times a day for 9 years now and I just can’t accept what we have to do … but it keeps her alive and keeps her with us. If insulin hadn’t been discovered, we’d have had to watch her starve to death in front of us … this is what happened to diabetic kids 100 years ago. In this context, every day we still have with all of you who have T1D is an absolute blessing for all of us who love you. So we wait, and wait, … Those of us who understand what you’re going through think the world of you, even if we don’t feel the pain of what you endure every day. Please just keep being heroic.
Hello
My name is Joseph VanWyck. I have been type one diabetic for 30 years, and I agree we should lock those damned researchers up in a frakking cage and conduct experiments on them rather then on mice who have no genetic ties to us. Like so many other diabetics, I AM BEYOND SICK AND TIRED OF THIS DISEASE, and the FRAKKING GOVERNMENT needs to seriously do something about it, and STOP worrying about their DAMNED BLOOD MONEY. When you look at it, all the insulin and testing supplies that we get is for nothing but BLOOD MONEY, and I think that it is time for this DAMN DISEASE to end. We all know that they will begin to give a damn ONLY WHEN IT EFFECTS THEM, than they will want something done about it, but it has always been easy enough to turn a blind eye and a deaf ear to those who are in need. I think that it is time that WE THE PEOPLE make them see us and make them understand our suffering, and we do suffer. I recently lost a younger cousin of mine due to his diabetes. HOW MANY MORE DO WE NEED TO LOOSE BEFORE PEOPLE BEGIN TO DO SOMETHING?
That was a GREAT POST! Well, if they can’t cure us, I wish to God they would make euthanasia legal in the U.S. so I could end my suffering WITHOUT the mess of firearms.
Here is to “the cure”!
Well that was a great post! I have only been diagnosed for six months now (although I say only it does feel like six years) Wow I have so much to look forward to. Right now I want hope, I need that hope and everytime I hear something I think ” Great one step closer”. I just cant even picture myself having this for 10- 20 years longer, ten, twenty weeks is too bloody long!
I think I would be OK with diabetes type 1 if it was just the needles and the BGL’s check but it isnt just that, its the hypos and the complications.
I want them to stick me with this pepper crap, I want an islet transplant, I want anything that will help stop me losing a leg or my sight or my kidneys or my life!!!!
I wish I had type 2, I would walk all day and eat lettuce for six months if it meant that I was given a choice, I never got a choice!
My question is if they are not going to ever even really try to find a cure, why run all these trials, why put this money into research. It just cant all be that bad, wouldn’t the first company to find a cure make money? Wouldnt the first company to design a closed loop artificail pancreas make a s@#$^ load of money?
My last question is if we are only ten percent of the diabetic population and we are such a drain on the health system and the government does subsidise some of our costs (here in Aus most of our cost) then wouldnt it be more beneficial for them to cure us and make money off the type 2′ s, cause can I say I am ok with that!
Still Type1: There are times, in my darker moments, late at night, when thoughts that would get me labeled a ‘eugenesist’ or a ‘Nazi’ creep into my brain. I’m careful how I voice them as well. Euthanasia is not the answer, at least not currently. But it wasn’t so long ago that we were considered disposable: before insulin was available, it was recommended that well-to-do children be placed in special ‘homes’ to die, as it was deemed too terrible for the mothers to watch their children’ literally shink and starve to death before their eyes. It was not an easy death either. Witnesses interviewed for a recent book on the subject spoke of being able to smell ‘the sweetness’ hanging in the air around the bodies of emaciated children slumped in the hallways of what was essentially an asylum.
Insulin changed all of this. We now get to grow up, have families and pass down our flawed genes to another generation, who then manifast Type 1 and start the whole cycle all over again. While I can’t sit here and tell every Type 1 diabetic that it would really be a good idea if they chose not to pass along what is coming to be understood as flawed genetic material, I have gone so far as choose not to be a mother. I’ve told this to my husband and while he would like to be a father, the risks to me physically far outweight my desire to have a baby. Because it runs in the family, I have a good chance of giving birth to a child who will present as a Type 1. I refuse to do this to another human being. It is my personal decision not to take the chance of bringing any more potential Type 1 diabetics into the world. Harsh? Yes. Am I sitting in judgement over someone else’s potential to be born? Absolutely. Am I doing my utmost to take responsibility to prevent the suffering of another human being? You betcha. I love my potential children too much to do this to them. It was too late for me – my father came down with this as a 28-year-old and I was unfortunately already on the way. But at least I can spare another generation of my family the anguish of this disease.
In a way, we might be moving toward a time when Type 1 diabetes will be a thing of the past, but not because there is a cure for it. Via the Teddy Trial-Net study (looking at relatives of type 1 diabetics to find the genetic markers for type 1) geneticists are trying to get a fix on predicting who will get Type 1. The Barbera Davis CenterWe now have the technology to choose our children’s genetic makeup via in-vitro fertilization. Imagine a world where embryos could be screened for this, where even couples at risk for bearing a Type 1 child could edit it out of the family tree by choosing an embryo that did not carry the flaw, weeding out a potentially devastating disease for generations to come.
Are there drawbacks to this? Are there ethical and moral issues about deciding that the diseased no longer have a place in society? That they are expendable? Of course. Even ith this disease, my life has value, even if it is only to my family and friends. But given all of the emotional, physical, financial and societal costs of raising a sick child to both the average family and to society as a whole, I see a day coming, sooner than later, when the above scenario will be welcomed with open arms. It’s already happening where the selection process is for incurable and untreatable diseases like Tay-Sachs and some of the more rare and horrifying birth defects. Families that are suceptible to certain genetic cancers are screening embryos as well. Again, as I’ve said before, this will occur because people want their children to be healthy and in that respect, I honestly think more and more people will choose this route if they can afford it. There is a large and growing market for this and those willing to spend big money on the process of selecting embryos free of potentially damaging genetic flaws will pony up the cash to have diabetes-free children. As I have said before, the business of healthcare in the United States is not about what is is ‘right’. It is about what makes investors and pharmaceutical companies money. ‘Right’ is a moral and ethical judgement and is subjective. The business world, at best, gives lip service to this and goes about the business of cashing in by providing what people REALLY want (cosmetic surgery, impotence and obesity treatments), not what they say is ‘right’ to want (cures foir childhood illnesses).
Rachel: I am REALLY sorry about the diagnosis. This disease sucks and I honestly wish there were some way of simply eliminating it. Unfortunately, market forces, and the public’s generally short attention span are not on our side. I wish it were different. but as my grandmother once said, ‘If wishes were horses, then beggars would ride.” It’s going to take more than wishes to do something about this. It will take money… Lots and lots of cold hard money in the hands of the correctly connected people, because that’s the way the world works.
It would take someone who had the collective political will of Franklin D. Roosevelt, Huang Di and Gengis Khan, and a health care crisis so large that it brought the whole system to its knees in a matter of weeks to get a stem-cell bill through the U.S. Senate with a veto-proof margin (I chalk this up to having to simply wait out the next two years while our Cretin-in-Chief finishes his term). It would take the fundamentalist idiots in my country to have a collective brain transplant and to stop trying to oppose federal funding for research. It will take filthy rich people with wads of cash lying around collecting dust willing to fling large sums of unsecured money at researchers. It would take researchers who are brave enough to go beyond the ‘white mouse’ model to propose human tests of some of these cures. I used to belive in these things, but then, as a kid, I also used to believe in fairies and unicorns and it’s a hard day when you realize that the world simply doesn’t care unless you have enough money to MAKE IT CARE about you.
Honestly, the bravest people I’ve seen in this fight so far are the Type 1 diabetics themselves, who are willing to undergo any kind of experimental testing out there, no matter how painful and no matter how deadly the potential side effects, just to have a shot at a day without needles (the pun is fully intended). Dr. Faustman (she of the rogue spleen cells) has lined up 600 Massachusetts adult volunteers for human trials, which have yet to find funding. 600 type 1 adults who are willling to risk their bodies to see if her methods work in humans. She’s also with a university, so there may be a remote chance for a cure with her method before Big Pharma purchases the rights to the cure and hides it away. Gotta sell that insuliin to those cute children and those desperate parents, right?
But don’t dispair too deeply. Be of good cheer, for you are an Aussie. You live in the land of marsupials and thoughtful politicians and other strange and exotic life forms, where health insurance isn’t the drawing line between who receives insulin and who does not, who lives and who dies early from complications. Thanks to having a collective government that was willing to place science over the religious sensibilities of zealots and provide research funds and overturn bans, you are likely to benefit from potential cures underway in Oz long before those of us in the States. The only thing Americans can do is to have the JDRF and the ADA keep throwing money at weasely politicians and scarce researchers and hope that they aren’t outbid by the pharmaceutical and insurance companies for their representative’s attention. The only current lawmaker I have any REAL respect for is Diana DeGette – her motivations are delightfully transparent: her daughter suffers from this and diabetic Coloradoans got to see just how pissed she got when His Holiness Bush II vetoed her first stem-cell funding bill. If the moron in the White House knows what’s really good for him he’ll sign the bill when it crosses his desk later on in the month. Nothing like a mother’s anger and determination to get something done, eh?
And yes, they are working on an artificial pancreas, as they have been working on it for over 20 years now. I’d have expected some real progress by now, but nope, nothing so far, sorry. I’d rather have replacement cells my body won’t reject that will regulate my blood sugar without having some machine hooked up to me and for which I have to fork over half my yearly paycheck because insurance thinks its too risky to cover. Also, understand that for an artificial pancreas to function as a real pancreas, the mathematic calculations programmed into it would have to be incredibly complex and nearly perfect, to eliminate the potential for fatal hypos in sensitive individuals. We are not there yet. We may not ever be there, unless the liability and business risk can be completely eliminated.
What I’m really curious about is whether or not adult Type 1 diabetics, or any diabetics will ever really get pissed enough to get together as a hardline voting block in whatever country they’re in to make any kind of difference as far as an organized and government funded hunt for a real cure. There are enough diabetics in the U.S now to constitute a political party, if they so chose (There may be more diabetics that Libertarians, actually…. hmmm). Lord only know what might happen if diabetics in India organized – it’s where most U.S. companies test therapies for Type 2 diabetics (we’ve even outsourced our medical testing – I’d laugh if it weren’t so serious). It’s food for thought. After all, we can now survive childhood. If you live long enough with this disease to earn the right to vote, you should use it, early and often as they say, to make sure that those in charge of doling out the money for research are in you rcorner, not Big Pharma.
CJC, thanks again for the comments. I would never propose to apply euthanasia to the entire population of people with Type I diabetes. I am hoping that as a individual this choice will be available to me, when the time is right.
Having endured this disease for 16 plus years, I have seen many many individuals succumb to this disease, some by their own hand. The youngest of these was 26
I too have elected NOT to pass this horrible disease on to another generation. If others had the courage and intelligence to make the same choice, perhaps we would see the end of this disease after the passing of several generations.
On Faustmans research I am very doubtful that this will have any effect on the disease.
BCG has been tried several times both here in the U.S. at the Barbara Davis Institute and in Israel with no effect.
Funny, I first contacted Faustman just after she published her work in the July 2001 edition of the JCI. At that time Faustman responded saying that human trials would be possible by 2003, obviously that did not happen. What did happened is the work has been diverted into creating a machine to detect levels of ยbadย T-cells in the blood. She has also managed to virtually guarantee a paycheck for many many years to come. Many/most of these Ph.Dยs are funded by grants. No grants = no work = no paycheck.
She is also a founding partner in Keel Pharmaceuticals. http://www.keelpharmaceuticals.com/
Interestingly Keel is hard at work at curing autoimmune diseases. Iยm sure you can figure out the rest.
StillType 1: Nice to know Faustman sold out. I have to wonder what the going rate for a soul is? Next time you contact her, ask her what her price was. I’d love to see her reaction.
Of course, there are still the guys in Canada with the chili cure. Maybe they can bottle it and send it with a six-pack of beer, cause it’ it’s one thing Canadoes really well, it’s the beer. Maybe Type 1’s can figure out how to sprinkle it over nachos. Just on a lark, I told my primary care physician about it and he said “Well, it can’t hurt – try eating some. It does tend to work its way around the body.” I wanted to beat my head agains the wall – then I began wondering if I could find a purified form of the compound, a really big needle and trial the damned process on myself. Feh – with my aim I’d hit my liver and then both curing myself AND drinking beer would be out, LOL.
This development doesn’t surprise me really, though it does deeply disappoint me. Yay, more potential research down the tubes, more money raised by desperate parents dumped down the black hole of Big Pharma. I’m seen at the Barbera Davis Center. The staff rotates, as it is a teaching hospital. The last nutritionist I saw was just so cute, with her insulin pump and a big bright smile. She gave me the email address of a guy who does nothing but treat depression in Type 1 diabetics. I’m considering talking to the guy, but I have a sinking feeling about what he’d say… most counselors are just full of happy platitudes and most of them sound as if they’ve gone through the corporate movitational speaker training boot camp. Spare me. Unless you live with this and the complications and understand the scope of the difficulty of dealing with this disease, keep your platitudes to yourself. I was seeing a typical shrink, who advised me that the best way to deal with my anger and depression was to write a book, to help other sufferers cope.
You know, I told her as I left her office for the last time that the only thing that would really ‘help’ us was a cure for this nightmare. There are already enough books out there about Type 1, though admitedly there are few that deal with it from an adult POV. I just don’t think that anyone in the general public who isn’t affected by this would care enough to read it, and the tone of my hypothetical book wouldn’t be one of ‘we have to keep hoping and keep a positive attitude.’
Mine would be about forcing drug companies to do something other than bleeding sick children and their parents financially dry. It would be about how to force insurance companies to cover us, about how to motivate doctors with something other than a payckeck and about how to hold the U.S. and other government entities accountable for creating the healthcare environment we currently enjoy.
Remember, this is all about economics. Drug companies make money off of treatments, not cures. They will only put moeny toward curing sometihng if there is money to be made, or the cost of not curing it would bring society to its knees, or if some government agency forces them to undertake a cure for the public good (Wher is Stalin when you need him, anyway?). The Type 2 epidemic may well do that – in the next 20 years, as the boomers begin to make huge demands on the health care system and the number of Type 2 adults explodes, it will be very interesting to watch the system collapse. I’m planning on kicking back and watching the show with a near-beer and a Lean Cuisine pizza.
As for suicide as a way out of dealing with this disease – I figure that when the time comes, and my eyesight, my kidneys or some other troublesome body function becomes too difficult for me to deal with, I’ll take care of things. However, I’m also far too much of an ornery bitch who Is sick and tired of the way our healthcare system works to go down that easily. The latest person I’ve ‘enlightened’ about how the pharmacetical industry is one of their salespeople, par tof my study group. She was appalled when I showed her the numbers and brought up the recent aticle inthe WSJ about how Big Pharma is taking donations from the JDRF, almost as bribe money to do anything for Type 1 kids.
I’ve also made stipulations in my will that my body will be used for medical research. Most of the time cadavers come from among the indigent. If there is any way that I can show these young medical students what the body of a mature adult that has been ravaged by Type 1 diabetes looks like, if it leads just one of them to do something to help us find a cure after lookking at the truth of this disease rather than looking after their own bank account, then donating my body will have been worth it.
I do not, however, recommend that you check out yet. There have been times that despite my overwhelmingly cynical nature and dark view of human nature, I have been surprised at the good that people are capable of doing. Amazing things can be achieved when they are motivated less by the bottom line and ‘what’s in it for me’, or by increasing their market share, than when they put aside monetary goals and do something simply because they must, because it is the right and honorable thing to do. Those times are rare and seem to occur only during crisis. For me it boils down to simply being meaner and more stubborn than the disease.
Tell us more about stem cells from a donor that might help cure or at least help us control this aggrevating disease.I hope for a cure or something to help some of the suffering we have to go thru. Please send me all the information that involves type 1 diabetes . Send to 711 Westmead St. Dothan, AL. 36301. I hope to here from you in the future soon.
I have seen a lot of good posts and comments. I am a type 1 diagnosed at the age of 20.. Now imagine that right before I turn 21. There goes my big bash at the bar and all the great food right down the drain. I just thank god that I am still alive today because I did not know I had it and I had a blood sugar level of 1100. Yeah now thats high so still thanking god. Also President Bush is the one who is an idiot in office and will not help cure us with the help of stem cell research which may I say can cure type 1 diabetes along with many other things. HOwever.. Scientists predict a full cure within 10 years and ya know what.. for them to say a cure will come out like that in a given time period gives me hope becasue 30 years ago.. thats like saying there will be a cure for cancer and we all know that isn’t coming anytime soon. I believe in hope and I live life everyday regardless of this horrible disease and if your gonna go out in this world.. better make sure you go out on top and thats all I am gonna say about that.
new drugs used in treatment of D.M
What happened to this group? I have to admit, I am only a 2 year diabetic, but I am 21, have the occasional beer, live a great college life, and inject everyday as well. I don’t like Diabetes, I wish there was going to be a near future cure, but talks of suicide and government bastards and bigh Pharm out to get us? While I am not going to be unrealistic, yes, it is in their best interest not to cure us, but look at what we have!!! Not but 20 years ago, insulin pumps were major medical devices on carts, now they are in research of some the size of a band-aid, they are looking into an artifical pancreas, and developments have come along to disguise the fact, sometimes from myself that i have type-1. Yes, there are people who dont give a rats ass about us, but love our money, but there are also people such as the Ford’s who are very wealthy and have children with type-1. There are so many supporters and well-wishers for us that when I saw my friends run for me and so many others show up for the run for a cure, I about wept. Givingup on humanity is giving up on ourselves, we are no lesser people than anyone else. I didnt read all the posts but I was disgusted on how so many people are just giving up, not fighting for answers (I check google news every day) and from what I have just seen from the past 2 years, a cure may not be comming, but a way to make life very easy and to control this very comfortably is already here with more advancements comming. Diabetes is curable and I can feel that each passing year will be easier and easier for me, not only with experience, but with new devices and information guiding my fight.
Good luck all, we are in this together!!!!!!!
i m 23 years old. i m a type 1 diabetic for 16 years. i m now goin to get married. S there any possibility that i can have sex and give birth to a child??? wat r all d complications.. Guys pls help me out…..
Hi dont know if all the people who posted will see this but I hope so. I too am a type1 29 yrs now and I
belive that I am being cured of this rotten disease. I purchased diamoxal from information on their
website micronutra.com two weeks before my wife purchased a book. “natural cures they dont want
you to know about” by Kevin Trudue at wal-mart in this book it said that there is a cure for type 1 “diamoxol” and gave the name of the Dr who ran the trial at the university of calagary. It was also according to
this book proclamed by the “asian diabetic society” the cure for type 1 diabetes. I have been using it
for about 3 months and have noted a 40% drop in insulin amounts. Please at least check it out
CJC: Bravo, diva. Your vehemence and passion sparked what had been too long a period of acceptance–perhaps I’ve even been apathetic. I would really like to encourage you to write and to publish what you write. You have a truly riviting voice that might just be what the US needs right now to get a fire under our politician’s asses.
I’ve been living with Type 1 for four years now (diagnosed with both Type 1 and Multiple Sclerosis in the same month at age 24) and for the longest time I believed there to be no cure for either of my diseases. They were just something that I was going to have to live with–for the rest of my life. That’s what every doctor kept saying to me. And I have been living with them. I rarely complain (but when I do I go on rampages), I try to eat well, my A1c tests are always right where they’re supposed to be. I ride my bike in the summer and swim in the winter. I try to do what I can–what I’m told I CAN do. I inject, not only my insulins, but also a drug called Copaxone, once a day delivered through a needle that makes insulin needles look like a fine strand of hair, and that has seemed to stop the progression of MS. I’ve accepted these diseases as apart of myself. Yes, GORDON, I have the occasional beer, and do enjoy my life, and do want kids regardless of the cost it might take on me, but I’ve decided that I’m tired of waiting for someone else to solve this problem. What if we refuse to pay any more money to the sickeningly rich drug companies? What if there IS another option? How hard do we have to fight for this? What kind of a force could diabetics press upon the drug industry?
The other day, my boyfriend said to me, as I lay on the bed going through one of my monthy, or bi-monthly, periods of “poor me”, “this absolutely sucks” and “okay, I’m done now–no more diabetes, you can take it away from me now–I’m toasted”, he said to me “You know, there are cures. There’s hope out there. I’ve been reading about new advances in technology…” and then he proceeded to tell me about the islet transplants. Yes, there are islet transplants and adult stem cell transplants, immune system repressions and bee venom injections.
Now I’m not naieve. I have heard from the time I was first diagnosed, that there were break-throughs right around the corner. “Ten years”, yes, I’ve heard that as well. And I’ve had friends who had been type 1s for years and years and shuddered when they heard people talk of cures. It’s so hard to believe that maybe there’s hope, especially when I listen to NPR and I hear NovoNordisc advertising about their “dedication” to the cure for diabetes and what strikes me most is that they have been around for almost 90 YEARS!!! Only companies that make a killing in profits are ever around for 90 years. Dedication to our diabetic pocketbooks, is what they are. A doctor cousin of mine, an internist, earnestly told my mother and myself that a cure was, yep, you guessed it, ten years away. I know he believes it.
But though my boyfriend is now trying to discourage me (due in part to the stress that trials might evoke from my body) from attempting to seek out cures for this disease that is, yes, easier to live with than 50 years ago, but still frightening in its potential capacity to destroy a body, I am actually researching new possiblities. Primarily due to the new research from Canada. Tonight I read an article from December 2006 about capsaicin (hot pepper’s active ingredient) and how they think that it might cure inflamatory autoimmune diseases for a period of time. That it might stimulate the body’s natural insulin making processes.
(here’s the link: http://www.canada.com/nationalpost/news/story.html?id=a042812e-492c-4f07-8245-8a598ab5d1bf&k=63970&p=1)
What was interesting to me was that there were theories that it might also cure multiple sclerosis. This is the first research that I’ve come across that included both diseases in it’s potential to cure. That alone gives me hope that they might be on to something. The fact that both diseases struck me within such a small window of time might support their theory that diabetes is caused by malfunctioning pain neurons. Why else would I be struck with these at the same time if it weren’t for some outside/environmental stimulus? (I mean, besides the theory that I sometimes have that God just hates me and is punishing me for all of my evil thoughts about people while working in the food service industry. I’m joking.)
So, yes, just like CJC, I think I might begin eating far many more hot peppered foods. It’s also supposed to increase your libido–perhaps that will induce research support on the part of my boyfriend. I’m kidding–he’s been there before and after my diagnoses and he’s been nothing but supportive. I think he’s just afraid that I will be let down by dead ends. Whatever. Anything’s better than nothing, right? Hope is better than disparagement and I refuse to have anything but hope. Blind hope, hell no, but hope nonetheless. If we have to start fund raising on our own, apart from the ADA (whom is, by the way, giving a lot of money, time and research not to type one research, but to type two!), to create foundations for people who want cures. REAL cures and not the nonsense that our endocrinologists would have us believe–giving us inhalers, pens, trinkets and toys that the drug companies are peddling to us like shiny objects to an infant. I’m starting to think that the only people who should treat type 1 diabetics are doctors with type 1. I’ve had three MDs tell me that I really shouldn’t want a pump because I’m still so sensitive to the insulin I inject–that I really don’t need a pump at this juncture. I can only assume that the are inferring that I should wait until I have such brittle diabetes that in order to live, to SURVIVE, a few more years I need to get on the pump.
I’ve ignored their advice after doing my own research about pump therapy (pumps extend the quality and longevity of a diabetic’s life) and am currently saving up for my whopping 20% of the bill ($2,00)of my pump (while I still have my student insurance). In the meantime, I’ll be researching cures. Real cures. And though I am by no means rich (this year I qualified for the earned income tax credit), I am educated and driven. Now that I’ve gotten the impetus to move, I’m refusing anything less than a cure–regardless of what kind of funding it might require–I guess I’m going to learn how to fundraise.
Yes, it’s tiring, this whole diabetes thing. Yes, I want to kick my endocrinologist in the shins when he tells me I’m testing my blood sugar too much. Yes, I want to throw my pen needles at people who snack casually and exersize without using a glucometer. But most times I realize that I’m a little bit more lucky that the guy who gets hit by a mack truck. At least I know what I’ve got and can take aggressive measures to deal with it.
We are alive. Let’s let the drug companies know that. Let’s be pioneers in this new age of medical industry. What seem like insane and ridiculous ideas about medical advancement today are the common sense and obvious logic of tomorrow. That, in itself, gives me more hope than I did a few hours ago.
I AM DIABETIC ONE, And there are so many of us that are surviving and not realLy living our lives like we should.we are tired of cold sweats ,waking up bouncing off the walls trying to get to the fridge for OJ or what ever we can grab! every 6 months (no matter how hard i try) blood test show that my body is getting worst! i am a single day of two beautiful daughters , i pray every night that they dont get it! then i pray for a cure,there are millions in this world saying the same prayer.i ran x-country and track in high scool and college and was riding my bike up to 3 hundred miles a week and traing for a marathon 5 years ago i got this horrible life changing desease, now i have to nice bikes sitting here with dust on the and old running shoes in the closet.I called to order my diabetic supplies and told the lady that i hope some day i will never have to call here again, she said to bite my toungue,because that would mean that she would be out of a job,I CRIED, please tell me its really not that way! JT
Hey JT…I know the feeling all to well and hi to all fellow diabetics….I’ve had diabetes now close to 30 years and believe you me there have been so many up’s and down’s and not just from blood sugars lol….but as we all know we are not promised a perfect life….so many times I’ve said why me LORD? But you know there must be a reason and I just have to accept the fact that this is my life and that if there is to be a cure in my life time then great…! If not then I will not let those who keep such a cure from happening rob me of what precisious time I do have here on earth with my kids, family and friends. I have a an identical twin who doesn’t have these pain in the butt condition thankfully.
I was 11 yrs old when I found out I had it….I can remember all the days leading up to the day I was told I had diabetes…actually that very first day when I became so thirsty and couldn’t quinch my thirst. But now I just enjoy the moments when I do feel good and let that be my happiness in life…don’t get me wrong, I do have my bad days of feeling sorry for myself and just wanting to be done with it all…but I try my hardest not to let it last long…it is my Faith in GOD that has gotten me this far and he will always be my rock. I guess the best advice I could either give or that you may want to hear is don’t ever give up and take care of your self to your best ability. I’ve only once have had a low sugar that caused me to actually pass out and go into a spasm…which I have no memory of since I was not coherent….and of course I’ve had highs that I’m embarrased about… I’m some what private about being diabetic until I get to know you…but having this has also enlighted me on other conditions that other people have to live with and I feel for them. Like my mom and dad always told me…I could have had something harder to live with and more restrictive then diabetes. When you think about it every one should eat they way we do…when we are eating the way we should lol…I wear a pump now and I would never go back to shoots…it has definetly made living with this so much better…i tried it back in 2001 but gave up on it after just trying it over a weekend trail with just saline running threw it…but since this past feburary i have been waering it and love it….i guess it was all in the timing….just wasn’t ready to deal with wearing it then….but i wish i did…and i only have to stick myself every 3 days instead of the 5 to 6 times like before when i went on huma log and lantius and i take just a quater of insulin of what i use to take by needles and only take huma log or nova log same thing…lol….nova just cheaper then huma…i have to admit this is the first time in close to the 30 years of having it that i’ve actually got to talk to other diabtics about my feelings….i always wondered about joining a support group…i guess i just felt like that if i don’t talk about it as much as i have to that it makes me feel more normal..what ever that is lol…well i’ll shut up now and hope that i either helped or if anything i got some things off my chest as well.. i will definetly check in to see who has wrote more…. take care to all and best of life to each and everyone of you…maybe some us will make new friends here…oh by the way i’m in Deland Florida and i’m a 40yr young male lol….take care…Tommy ๐
I do not have diabetes, but my husband and son both have type I. I recently attended a seminar held by a doctor who heads a research study at the Joslin Diabetic Center-Harvard of type 1 diabetics who have lived over 50 years with type 1 WITHOUT complications. There are hundreds of participants in the study, many of whom I had the pleasure of meeting. It was very encouraging to me that a person can live with this disease for a long,long time without complications. I wanted to pass along to all of you some of the reoccuring themes among all 50 + year survivors, complication free. Here they are: Good control, family support, daily exercise and positive attitudes. Kathy
WOW!!! this is the first time i have seen actual diabetics talkin about how it feels to live with this…this thing … Usually its so called quacks carrying on about how lving with it is easy…. I say PPPPFFFFT to them.. I have had type 1 diabetes for 16yrs (im 28 now) in and out of hospital all my childhood, fell pregnant and had my beautiful daughter with major complications iincluding high blood pressure, neuropathy, cardiovascular disease and just 3 weeks ago they found a major blockage in my aorta whch was patched up with a stent… Doctors do the whole TSK TSK thing when they get my hba1c results (long range test) but im sorry it just aint that easy to live with.. I am the only one in my family with it and when I do have a bad day all i get told by everyone is ITS NOT HARD JUST DO IT!!!! Im raising my daughter on my own which is hard enuf without doctors appointments constantly, paying for so many meds etc etc… the hardest thing i have found tho is havin to say no to my girl when she asks me for some of the chocolate im scoffing down to get rid of a major hypo..lol Gee that little rant has made me feel a bit better… Im in australia and read in the paper that they have this new thing for diabetes, as usual i got all excited as i read on only to find that it was actually to PREVENT type 1… I swore and thought “well it aint gunna help me is it” Even tho i dont kno any of u i know what your goin thru IT SUCKS!! My daughter was born 2 months premature weighing only 3lb she is now a happy healthy 5yr old and have been told that she has a 2% chance of becomin diabetic.. Ive heard bits and pieces of the stem cell thing and all the other so called cures mind u over here they are spending so much money on heroin injecting rooms so the junkies can inject in a safe envronment… m sorry but diabetics need 2 inject to stay alive but hey lets make the junkies comfortable while they get high.. lol they are giving junkies free needles but we had to pay for a box of syringes to stay alive HUH how does that work?? Sum1 obviously kicked up a big fuss over that cos now we can get ours for free 2…ANyway good luck to u all and lets just hope sum1 pulls there finger out and cures all these terrible diseases soon… Erin xox
Hey Tommy
Your post was right before mine on May 20th. I’m the one whose husband and 24 yr old son both have type I diabetes. I so appreciated your honesty about having the disease and your feelings. It helps me to somewhat understand what it must be like living with type 1. I believe I will deal better with my husband and son now knowing what it feels like and be even more understanding. I praise God for your confessed faith in Him. My husband and son do very well with their diabetes. They both eat right, exercise, see an endocrinologist and do well with their diabetes, but I know it is not always easy. We all have crosses to bear. We only get one shot at this life, what a shame not to make the best of it. I know with God, you will have the best. Take care.
Kathy
Hello there
I have heard about the Asian Cure as proposed by a doctor at the Calgary University (Kevins Trudeaus book-Cures they don’t want you to know about). Would anyone know more details about this treatment?
Thank you
Hello all,
I stumbled on this forum page while looking for information about the latest research into a diabetes cure. Some of the posts here seem disheartening. I wanted to point out that there is a charitable foundation working to raise money for diabetes research and getting human trials of possible cures. http://www.iacoccafoundation.org/index.html The Iacocca foundation appears to be a very promising organization. In fact I plan to donate a sizable amount of money to them in the near future. According to their research page
“Preparation for a Human Clinical Trial to stop the autoimmune attack in type 1 diabetes. Grant covers the first three years to develop an automated system and a new assay needed to accommodate the BCG Human Clinical Trial due to start in the fall of 2008.”
I also think that diabetes alone should not limit you from any physical activity. On a weekly basis I personally run 9+ miles, hike 10+ miles (carrying 60+ pounds) I even plan on climbing Mt. Rainier in 1-2 years time. I think that’s quite an accomplishment even for a non-diabetic. I used to not care as much about controlling my diabetes and I would constantly eat. I now excercise regularly and eat a healthy diet and have lost over 30 pounds since February. Since doing this my blood sugars are rarely over 200 and are usually in the 70-140 range when I test. Before I took control of myself I would rarely see a reading go under 200.
To add a bit more info, the Iacocca foundation has made a $10,000,000 grant to make possible human trials of The Nathan/Faustman Project, which was the work by Dr. Faustman described above.
http://www.iacoccafoundation.org/grants_diabetes_research.html
To me this seems very encouraging.
In a “Live” 1989 radio broadcast I heard a Director of the NIH claim that working in conjuntion with the VA, they had developed a cure for Type 2 Diabetes. He said that the study began under Ronald Regan because the burden of the disease was too great upon the American Society. The cure was subsequently developed under Bush. Testing for Type 2 was to be complete and to be ready by April 1993 and testing for type 1 would be beginning in a few months. I understand that type 2 was done first due to the volunteer DAV patients having better controls. It would have been the Republicans answer to socialized medicine. Nobody counted on Ross Perot being a schill for Clinton (2 duty free ports as payoff). Interestingly my contacts told me Bill was diabetic and his daughter was starting to show early onset. One of the first things Bill did was to close the lab and reopen it for AIDS research. My thoughts at the time was oh good, Bill will just deliever the cure sooner. On his second or third day in office, he received a package of pharmaceuticals and when the White House Staff Doctor demanded to know what they were, Bill threatened to fire him.
April came and went and the only word I could get was the Lab was closed. I never heard anything again until Bill ran for re-election. In his campaining he mentioned that the Democratic Party was dedicated to the cure of Diabetes which is more common in minorities and that he, Bill Clinton wanted to personally assure everyone that the Democratic Party was the Party for the Minorities. Hillary has mentioned the cure time and again in political speaches and she has tied it into the need to use aborted babies, fetal tissue she diminutes.
It was hard for me to take, the leader of my former party of choice had apparently murdered millions of people by witholding the cure but it goes further. In 1986 Hilliary was involved in the nation wide flu shot. My dad and I have little in common but work and we had both finished our semi-annual company physical within the same week. A week later the company let its employees go down and take the flu shot special at a local pharmacy. The nurse comment on how us large men needed a special dose so we had to get into a different line. Within a week we were experiencing flu like symptoms and at two weeks impaired vision and general neuralgia. We were tested again for blood sugar and his was 350 and mine was 395. In the previous glucose test less than a month earlier my glucose was 101 fasting 100 tolerance, Dad’s was 100 fasting and 103 tolerance. My numbers indicate 6 million new cases came from Hillary’s flu shot.
Finally after all this time I had to admit a good reason to believe the worst. Then a year ago the former manager of the NIH lab that was shut down, came into my business. He said the day Clinton took office the black suits came in and rounded all the staff up and told them to go home. As he watched, they confiscated all the paperwork and all the medicine. During Clintons term of office, all the researchers were denied Visas because they had classified knowlege. Then under Bush 2 they obtained their Visas and some went to England where even now they are trying to re-create the cure so he told me.
So I have to ask… Did the Clintons kill the cure for money, politics or to push for a cure that creates an industrial need for abortions? Could their evil genius include all three?
I believe the program was broadcast on KAVO radio from Fallbrook California after Easter week. KAVO had since been forced to sell out to a Mexican Salsa Broadcaster. They will not or cannot provide me with a copy. Anyway these are the facts and my conclusions I derived from them.
Again. this is my second post since march. I am still type 1 and had for about 3 years. I am managing, but I am living life like I would every day. I can’t sti around and wait for this disease to kill me. I mentioned before, I am not sure if or when there will be a cure based on our stupid president and all the money being made off our sickness.. nothing new. Anyway to all the people out there who have this disease, just wish for the best and don’t stop living. My life changed dramatically.. missed out on my 21st b day, lost 2 relationships, missed out on great desserts, how about the god damn list continues, but you know what.. I’ll live every day like its my last and if I died tomorrow I’ll be happy with the way I lived and thats all i’m gonna say about that. HERE IS TO THE @@@@ cure and hopefully someone out there steps up and puts stem cells to use.
hi I am 35 years of age and have type 1 juveinile diabetes high ,cholesterol ,triglicerides and thiriod disease. Im on the pump even with it I struggle to maintain a regular life style . i grew up playing sports in and out of school , working physicaly as a construction worker for last 17 years my body is battered and bruised but i am still expected to put a smile on my face when the insurance company mess me around on my mediction even though i pay 600 a month for my insurance for my self thhrough a cobra plan. iam fed up with all the crap we have to put up with just to live in this medicated society. the country we live in is a great country , and although i am thankful to live here i still think in less your totaly healthy you are screwed . they want to medicate you instead of heal you and i would bet they have a cure for just about everything but there is no money in cures . with that said all i can do is hope for something in are society to change but thats not going to happen any time soon. wish you all well and good luck
Hey everybody,
I just turned 20 on June 5th… And I found out that I had type one diabetes that night…. i got very sick from drinking and went to the hospital…I guess the 5 shots of tequila didnt help lol. But Im glad I found out I guess. it has been life changing since then. The doctors have me taking 5 shots of insulin a day. (one shot of humalog before each meal breakfast, lunch and dinner. As well as a shot in the morning and bedtime of humalin N) BUT every day I seem to get low sugar around like 40 does anyone have any advice for me or any tips?
THanks
Ryan
WOW! Many, many of you need therapy and FAST! I have never heard or met so many depressed, angry, senical, and mislead individuals in my life.
My husband WORKS for a pharmaceutical company for diabetes……he has for 8 years. My son was diagnosed with Type 1 three years ago….he is now 11. We are doing great! We have our challenges, and yes, if I could switch places with my son and take this from him I would….but to see what some of you have said about pharma companies and your outlook on life while living with your diabetes is just plain ridiculous!
God has a purpose for everyone of us. You have Diabetes….deal with it…take the best care of yourself as you can, and work at trying to help others (and yourself) live and beat this disease.
Why my son has this, I will never know…there is not one case of any diabetes on either side of our family as far back as we can go. Environmental causes…allegies to milk, antibiotics, long exposure to lethal airborne of ingested things are all likely the cause for most of you.
I do know that some day my son will see how he can help educate and encourage those newly diagnosed people…….he will instill HOPE in them and know that a CURE is ABSOLUTELY in his lifetime…..long before it’s too late!
We are hopeful and have been told by many, many doctors that there will be a cure in the next 10-20 years….for those already dealing with it!
CHEER UP, people!!!!!!!!
And another thing……
Government is to blame for the drug companies and insurance costs…..it has nothing to do with being republican or democrat……it’s overall GOVERNMENT!!!!
Same is true for oil companies….my dad worked for one of them too! Government!!!!!!
What does make a big difference is your attitude as to how you deal with your situation……your anger is only making you sicker! You cannot have a clear mind to manage your diabetes effectively if you are wanting to blame everyone else all the time.
Yes…it’s normal to get angry and upset at your situation sometimes……but…you must go on.
God put you on this earth for a purpose….it’s your job to find out that purpose…..at least your diabetes is treatable. If you take care of yourself you can live well into your Golden Years!!!!
I know several type 1’s who are in there 60’s and now 70’s….they have lived with this disease for years….when it was really scary to have it……
Having type 1 now is better than having it 20 or 30 years ago……take heart………you will make it!
Join a support group, talk to someone who is optimistic…these people live longer….because of their attitudes being so poitive anyway.
My son just started the pump…it’s like staring over….but we are learning one day at a time!
Finally…….you should never close your eyes at night withour checking your sugar to make sure you are at a safe range…..if you have been at all active…..you need a long acting snack (15 carbs/protein bar)…and NEVER, EVER, get behind the wheel of your car without knowing your sugar level is safe.
Someone above mentioned “having the joy of getting behind the wheel of their car and wondering each time if they’d make it home safely”…that is inexcusable and absurd! Never, EVER drive without checking and even pretreating….just to be safe for yourself and other innocent people on the road!!!!!!!!!! Come on!!!!
Last thing…..in comment to above statement about the “Stupid President” and STEM CELL research
I am republian (probably why I am so optimistic)……and yes I support most of Bush’s decisions.
I used to be against Stem Cell research……I totally understand why he takes his stance. Now that my child has Diabetes…I realize that this is the one piece of research that could expedite a cure…and this changes everything….. if someone in his family had a health crisis that called for this research he might also realize some things…..at the same time I am a Christian, and like him see the moral concerns….there is no easy solution to this.
I do hope that the future for Stem Cell research is approaching in our country…no matter which side is in office……as long as we keep this country safe, healthy, and FREE!!!!!!!
Look at all of the diseases that our country has conquered! Type 1 Diabetes is on the horizon too…wait and see!
Signing off!
One of my friend daughter is diagonised Type-1 diabetic today.The patiend is a small kid 11 year old girl studying sixth standard. How she should be tretaed . is there any permanent cure for that. After puberty will there be any chaange for cure. Please answer
Murugesh, she will need to be treated with subcutaneous insulin injections. This has been the only treatment for Type I diabetics for the last 80 years! And will continue to be the only treatment available to us in the foreseeable future!
Ah… I see my essay has parked some debate. Excellent. Now let’s spark some action.
Gordon – I am very sorry you were diagnosed with this, and I am very happy that you are having a great time in college and have had no difficulties so far. However, I believe that you have yet to experience what those of us who have had Type 1 diabetes for a long time have experienced: the denial of a job because of the illness, the inability to obtain affordable insurance that will cover medical supplies and treatment of the order necessary to keep oneself functioning, the resulting high costs of out-of-pocket drug expenses. You have yet to find yourself stuck in a 9-5 job you hate because it gives you health insurance, something that as a Type 1 diabetic you will not be able to obtain independently, for any price. Ditto for life insurance – I was denied additional life insurance last year when I attempted to up the coverage amount on my employer-provided life insurance. Should I precede my hubby in death, he’ll only be able to collect a year’s wages as part of a death settlement. It seems all they will allow me to obtain is 1 x my year’s wages, not the option of 5 x my years wages as is outlined in my contract. While this may not seem like much to gripe about, consider this: what if it was a child I was trying to protect as far as money to guarantee their future care and schooling? It’s the constant, never-ending little nasty injustices that the chronically ill in the country have to face every single damned day that get to you over time.
I won’t even bring up the complications. You can read about those in any publication about Type 1.
Until you have lived with this disease as a working adult, you will not truly understand what it is to live with it in a world that could really give a rat’s ass if you’re sick. The business world wants its trains to run on time, thank you and the attitude of most businesses seems to be “sorry you’re ill, but I need that report’. They also could care less if you need time to test your blood sugar, if you need a walk at lunch to bring down a high glucose reading, or to take time out if your blood sugar decides to head down into the single digits. Any one of these scenarios can get you fired, depending on the job and depending on how lenient the employer is in deaing with illness. Unlike what is typically viewed as a disability, such as blindness or being confined to a wheelchair, diabetes sufferers of either type seem to land in this grey no-man’s land regarding how they are employed and what kind of work they are considered suited for. It’s almost a Catch-22; to be employed, you have to prove to an employer that you are fully capable of doing a job, but once you do make a case for your employability and seek some small accomodation in order to make sure you are healthy to do the job, you are classified as ‘disabled’ and therefore unemployable. And then, you are blamed for your condition, since everyone knows its the diabetic’s fault if they aren’t 100% in control, since we are supposed to be perfect in our ‘management’ of this disease. I’d have to say that a majority of Type 1 diabetic adults live in a constant low grade state of fear whether they will admit it or not. They are afraid that they will lose their jobs and thus lose the group health insurance they do have, that they will be unable to financially provide for their families with the additional costs this disease thrusts on them. Ever price test strips retail? I have and it’s disgusting – nice to know I’m funding some pharmaceutical company executive’s vacation, golden parachute and retirement package. You could extend these fears to anyone stuck with a lifelong chronic illness – Type 1’s aren’t the only people in this postion.
Gordon, while I respect your positive attitude, you’ve only had this for a short time. In a decade (that is when they are promising a cure, right, just like ten years ago and twenty years prior to that) come back and talk to me and tell me what you’ve discovered about living as an adult with condition. If you can maintain your current outlook without gaining some hard-won cynicism, I will stand corrected. I think, in the next ten years, you will understand where those of us who are veterans of this are coming from in our weariness and anger at the lack of substantial progress toward a cure. We’re also pretty miffed at the increasing difficulty of making our way in a society that increasingly shows little tolerance or understanding for the chronically ill.
Again, I ask all the Type 1 adults out there, along with any over-18 members of their families, what they intend to do in the next election? I have no political opinion at this point, save that I tend to favor Democrats who put science ahead of religious superstition. Since we are held 100% acountable for our own care by the public and the medical establishment and since our endocrinologists can always wash their hands of any responsibility regarding our general condition (After all, we are supposed to manage it perfectly right, and any complications are our own fault, correct?), I say we take matters into our own hands and elect someone who will at least lift the ban on federally funded research into stem cell replacement research. I don’t really care who it is, and I don’t care which party the person comes from. It’s also a little hard to tell who believes what, with everyone jockying for the middle right now (It’s going to be a long sixteen months folks – pull up a chair and get a ringside seat) but any candidate that can at least promise and follow through on that one little point alone might win enough Type 1-motivated votes in a district to turn the tide of an election. It’s something to consider.
CJC
I’ve had type 1 diabetes for 38 years and this isn’t living this is only survival. I have been fired from jobs due to insulin reactions. I can’t work outside the house because I never know when I’ll have a reaction or how I will feel. I can be ill for minutes or hours depending on the reaction. My husband won’t deal with my reactions any longer because I get very difficult and fight. For those of you who don’t have diabetes imagine being awoken by someone forcing food into your mouth. How would you react? He has told me he will seek medical attention when I am not conscious. I feel my life is in jeopardy, but it would be if I was living alone too. He has insurance coverage, I can’t get any. My A1C is always in the average range, so what! I am very careful about what I eat, so what! Diabetes isn’t just diet control. I don’t have any complications so far. For those of you who think we should cheer up, you obviously haven’t lived with this horrible disease for long. This disease seems to be getting harder to live with the closer I get to menopause. Does anyone know if this is true?
Don’t get me wrong, I love being alive but my quality of life is pretty poor with a constant fear of death or my blood sugar dropping to the point of not being able to function. I live with fear every waking and sleeping moment. I’d like to thank each of you for sharing a bit of your lives. This is the first time I have been able to vent about this d**n disease in 38 years.
I’m from the US. Have there been any updates to the pepper solution that was posted in 2006?
I need a cure and need it now! I’m sick of this disease.
Hi Again,
Well it took me a while to find this site again… I can say it was a great read again, It really gave type 1’s a place to vent and why should we be told how miserable we are by a non diabetic… I mean I am angry also about having this disease but I am generally a happy person.
CJC its been a year now, reached my anniversary in June… I celebrated by eating a block of chocolate, real creamy chocolate, and hey I am human and been a non diabetic longer than a diabetic and I am going to stuff up alot… and I do!
Well the artificial pancreas has hit the news hear with the study in cambridge, they have now developed a closed loop system blah blah Bring it On! I just want something to now say “this new treatment will be available to type 1 diabetics and they will no longer be at risk of ” Thats the dream!
So I thought everyone was great and all responses really informative and interesting and I loved reading everyones… I just wish they could be forwarded to some of the politicians, scientists etc..
Where do we all go from here….
By the way I got diagnosed at 30, I have a supportive boss who does everything she can for me… I am lucky and I work in welfare, so it would be a little hypocritical if they did not care about mine!
Rachel
Amy – again, I am sorry that your son was diagnosed with this and I’ am very glad he’s doing well so far. It sounds as if he’s got two very supportive parents that care deeply about him and are sparing no expense and time and resources to help him manage his condiiton.
Not all of us were so lucky to have what your son has, both in terms of parents and in terms of the environment in which our diabetes manifested. If I have a darker view of what diabetes is and what life with this condition is like, perhaps it is because I come from an environment that was the opposite of what you are providing for your child. I was left to figure out how to deal with my diabetes on my own at the age of 11. My father was completely absent (physically and financially) and what support I had came from a single mother that was struggling with her own health issues (barely controlled Chron’s disease) as well as attempting to take care of three children on her own while divorcing an abusive, alcoholic second husband. Please also understand that the treatment regime that your son is on is a modern one and that he has many more options for insulin delivery and far more blood sugar monitoring options that I had when I was diagnosed. Hence, he stands a good chance, if he takes care of himself, of holding off some of the worst complications this disease carries with it over time. My options were a little more primitive and I remember having to educate myself with what little literature there was on Type 1 diabetes at the time by reading books geared toward adults, not children (thank you, Granger Public Library) and those books, while informative, did not take the usual ‘do what you’re told and you’ll be fine’ route taken by most literature aimed at Type 1 children. I saw unvarnished full color photos of what long term Type 1 diabetic complications looked like – there is something about confronting the reality of a disease, minus the sugar-coating (no joke intended), that makes you grow up fairly quickly and take things far more seriously than any child should really have to. But I’m glad, in a way, that I learned early to take care of myself and to figure out how to cope without close parental supervision: moving out of the house and going to college were probably easier, diabetically, because of it but the road to getting there was pretty difficult. Not every child diagnosed with Type 1 diabetes has the advantages your son has, and I’d be careful about saying ‘CHEER UP’ if you don’t know what kind of environment a newly dignosed Type 1 diabetic is going to have to cope with while also learning how to ‘manage’ (HAH!) this disease. Every time I think of leaving my job and my insurance to pursue something I love doing, I just remember those photos of the leg ulcers and the blackened feet and the eyes that were made useless by retinopathy – they are the cold, brutal evidence of what diabetes can do to a person without the supplies and medicines to take care of it. They are always in the back of my mind, for good or bad.
I hope your son stays healthy and I hope, for his sake, that he is able to get health insurance when it comes time for him to leave the nest. I hope his dreams aren’t stunted by having to take a career path that will provide him with affordable insurance rather than doing what he loves. Without a lot of money or family support as a buffer, Type 1 diabetes can easily kill dreams. I hope your son’s dreams don’t die on the vine.
Fed Up;
Gods, I’m sorry that you’re having a rough time – I wish I could make it better for you. I’ve recently volunteered as a lab rat for some studies that deal with the genetic side of Type 1 – we’ll see if forking over some blood and tissue on my part can help make a difference down the road. You aren’t alone though – lots of Type 1 adults find themselves in similar circumstances and the support for adults with Type 1 diabetes is pretty friggin’ dismal. As I’ve pointed out – it seems like once you’re no longer short and cute enough to help with fundraising efforts, you’re told to just ‘grow up’ and ‘learn to manage’. One of the biggest failings in our current care for Type 1 diabetics involves the transition period from ‘dependent’, when Mommy and Daddy are hoving over you helping you take care of things to suddenly finding yourself out on the street being told that you have to figure things out for yourself and get health insurance coverage (again, HAH!). It’s incredibly rough and the sad thing is that adult Type 1 diabetics are only now beginning to talk about what they go through and to network with one another for support. I’d start Googling some of the Type 1 oriented blogs that have cropped up recently. ‘Six Until Me is pretty good” as is Scott Strumello’s blog – he’s pretty sharp and isn’t afraid to hold the pharmaceutical and insurance industri’s feet to the fire on issues regarding research, coverage, cost and the lack of progress if he feels it’s warranted. Read the info – at least you know you’re not the only one who’s sick and tired and pissed about the pace or research and treatment.
As for your hubby, he made a promise to love, honor, cherish and take care of you, until death do you part. Those words are usually part of the ceremony, if memory serves me correctly. If you are doing all you can to try to manage this unpredictable, pain-in-the-ass condition, then he needs to live us to his end of the marriage bargain (and part of marriage IS an agreement between two people) and understand that you’re hurting, sick and that he needs to be understanding. Remember the ‘for better of for worse’ part, the ‘in sickness and in health? Did he think that was just a sayin and that the vows only counted as long as everything was great? I hate to break it to him, but this is part of the ‘for worse’ part of marriage and he needs to step up to the plate, be a man and take care of his wife. If he doesn’t, then contact me privately and I’ll give you the number of a divorce lawyer that will make him rue the day he was born. End of subject. Sorry if I soulnd vicious about this, but I can’t stand people that waltz out when things start getting a little tough. See the above paragraph about my father. Hang in there, hon. I found myself a saint and I married him and I can honestly say I get down on my knees every morning (usually while looking for my sneakers) and thank whatever powers that happen to be passing through that I am married to such a good-hearted, responsible, loving man. A wonderful caring spouse is one of the greatest assets the chronically ill can have. he is the best thing in my life, hands down.
Of course, he might have ulterior motives for sticking around – I can cook and I’m pretty sure he doesn’t want to go back to the days of nightly frozen pizza and prepackaged mac and cheese.;-)
CJC
I’m a 29 year old type 1, diagnosed a year and a half ago. I’ve been managing it pretty well, but am burdened by the cost of it (I have no health insurance), and my blood sugar tends to drop at work. I have recently been encouraged by two co-workers (one an ayurvedic master, the other a nutritionist) that type 1 can be cured with very strict diet and exercise practices. This was astonishing to me, has anyone else heard or experienced this?
Even if they are misinformed, I’m very interested in alternative therapies. I’ve heard wonders about using blueberry leaf to lower blood sugar levels (and therefore require less insulin). I’ve also heard that eating bitter melon helps. Has anyone had good or bad experiences with these? Are there other alternative therapies you could recommend?
Thanks!
Stacy… there is an old saying about fools and their money, regarding a quick parting of the ways. At a year-and-a-half of having Type 1, you’re probably still a little in the denial phase. I know I was. It’s understandable to want a miracle, to hope that maybe the doctors were wrong and that there is some enchanted cure out there for you that the big bad medical establishment is hiding from you (which is kind of a laughable thought, because if there was such a thing, Big Pharma would be busy trying to make a fast and sustainable buck off of it). Your lack of health insurance isn’t helping the situation and is probably contributing to the desire to throw your hard-earned cash at the other end of the medical care spectrum: the witch doctors.
Don’t, I repeat, don’t give them your money. Ever.
While I have some serious problems with Big Pharma regarding their money-grubbing habits, their lack of a desire to cure illness and their focus on the latest anti-impotence and blood pressue drugs, those issues pale in comparison to the utter hate and loathing I have for the entire group of hippie-dippies on the other side of the fence making CLAIMS THAT THEY CANNOT BACK UP IN ORDER TO TAKE MONEY FROM THE DESPERATE. Congrats – you’ve just run into the snake-oil salesmen an the well-meaning hippies wiht bad advice and if you aren’t careful, you will be much poorer AND STILL a Type 1 diabetic.
Let’s get a couple of things out in the open. No matter how much you wish it, THERE IS NO CURE FOR DIABETES. THERE IS NO CURE FOR TYPE 1. THERE IS NO REAL CURE FOR TYPE 2, NO MATTER HOW MUCH WEIGHT YOU LOSE AND HOW CLOSELY YOU MONITOR YOUR DIET. YOU WILL STILL BE A DIABETIC.
ANYONE WHO TELLS YOU OTHERWISE IS EITHER TRYING TO PART YOU FROM YOUR MONEY OR IS GROSSLY MISINFORMED ABOUT DIABETES AS A WHOLE.
I wish wholeheartedly that this wasn’t the case, but it’s true. Alternative therapies might address brnging your blood sugar down a little and I’m fairly certain that the vitamins, the bee pollen and the blueberry leaves won’t hurt you. But they won’t cure you either and nothing can change that for now. The so-called ‘nutritionist’ you talked to that claimed you could cure Type 1 diabetes with ‘exercise and a strict diet’ should be turned into the medical board of whatever state she’s in. She should be censured and whatever license she has revoked. Permanently. Unless she was mistaking Type 1 diabetes for Type 2 diabetes, in which case the aforementioned should happen simply because someone that ignorant should not be dispensing medical and nutritional advice. The wrong information in the case of a Type 1 diabetic is not only incredibly negligent, it can be potentially deadly, to you and others (should you be behind, say, the wheel of a car when your blood sugar hits 900). She’s wrong. Go to a REAL endocrinologist and get a reference for a REAL nutritionist that can help you with carb counting.
As for that ‘Aruvedic Master’… You know, if the Aruvedic tradition was such good medicine for diabetes, why the hell is there a huge epidemic of both types of diabetes in India? I mean, that’s where the Aruvedic tradition originated, right? It may be great for overall health, but it can’t cure Type 1 diabetes. Neither can Gardnerian witchraft, faith healing, snake venom, peyote smoked in a sweat lodge, massage therapy (though at least THAT will help you feel better after about an hour or so), accupuncture or Chinese herbalism. Altenatives to traditonal medicine are fine up to a point. Whatever makes you feel better. If a non-diabetic tells me they’ve achieved greater health through such practices, then great. Yippie. However, I doubt you will find a Type 1 diabetic that has EVER been able to go off insulin using one of these methods. Look as hard as you like. Take your time *examines nails*.
Even if a Type 1 diabetic doesn’t actively pursue alternative treatments, certain elements in our society pressure us to ‘go natural’ and try things that will ultimately hurt us if we substitute them for our insulin. Case in point: I lived with a guy for about two and a half years who was into the whole ‘New Age’ belief system, lock, stock and barrel. I chalk the relationship up to being young, very stupid and a sucker for bass players (my own personal failing). The guy in question was so into his beliefs that anything that did not conform to what he belived reality to be was dismissed. this included things like traditonal medicine and the laws of gravity on occasion. When finally dumped me, He yelled at me because I wouldn’t agree to spiritually give up my diabetes’ and skip down the frigging path of enlightenment with him. If only I could. He told me he couldn’t deal with my occasional bouts of hypoglycemia, watching me take shots and test my blood, watching me eat meat (admittedly, a separate subject – I tried to go vegetarian for his and our grocery bill’s sake and ended up in the hospital – he said I wasn’t trying hard enough) and taking preventative ACE inhibitors. Then he brought up how Deepak Chopra had a cure for Type 1 diabetes and if I loved him I’d give up my diabetes because he was having a hard time dealing with it.
I told him that I couldn’t just ‘give it up’ to be more in line with some New Age ideal, but that it was medically impossible. I also told him that if there were times that he couldn’t deal with my illness, there were certainly times that I had trouble dealing with it too. I am grateful now that it ended – my husband has no trouble fetching me a glass of OJ if I need it and his only concern is for my well being, not that I’m shattering his dogma.
My opinion of New Age health ‘practitioners’ such as Chopra, their obsession with rejecting science-based medicine in favor of mysticism, and their willingness to charge money in order to foist worthless ‘cures’ for Type 1 diabetes on the recently diagnosed and fearful is somethere below slime and just above a used urinal cake (harsh? YES! DESERVEDLY SO!). But only just above that. People have died while under the care of these charlatans, and this includes children whose parents were desperate to prove that the doctors were wrong about THEIR kid having Type 1. Also, don’t be deceived by those Google ads promising cures that don’t exist. I’ve written to Google on occasion and warned them what might happen to them if someone croaks and they trace the cure back to something Google was promoting on their ad bars. Caveat Emptor only counts if the victim is an adult and makes the conscious choice to try the so called cure. children don’t often have that option. And none of these so called cures are cheap. If you think you’ve got a hard time paying for insulin and needles now, wait until the witch doctors, ‘masters’, the naturooaths and the other vestiges of discredited Galenic and religion-based medicine (I’m surprised that no one has told you yet that your condition is due to an imbalance in humors :-P) have had a go at your wallet.
If anyone in the New Age ‘medical’ Community wishes to take me on for my criticism of the swindlers in their midst, bring it. Better yet, trot your cured Type 1 diabetic out for everyone to look at and have it confirmed by an certified endocrinologist at the Barbara Davis Center in Denver. I’ll even know the doc you can talk to. C’mon, if you have a cure, let’s see it work. I dare you.
Stacy, if your blood sugar drops at work (not sure what shift you’re on – I worked third shift when I was younger and had incredibly bad insulin reactions due to shot timing, delayed meals, etc.) Try keeping glucose tabs or something that you won’t be tempted to snack on at your desk in case you feel lightheaded or shaky. If you don’t have a desk job, ask the boss if you can carry glucose tabs on your person, just in case. Because you wouldn’t want to sue the guy for all he’s worth if you happen to have a low blood sugar episode on the job and be denied the time and the methods to treat a legitimate and easily managed medical condition. Depending on where you are, look up the laws related to illness in the workplace and see if you can’t make your case to him that way if he resists. Try to be nice first though, and phrase it so that he believes he’s you’re doing him and his company a favor by being so careful of your own health. Bosses love that; it shows initiative.
CJC
Has anyone actually tried blueberry leaf, goldenseal root, or any other alternative therapies? If so, what was your result?
we are all people. We are way to smart for this $h!t. We can only be tied to these puppet strings for so long before, well….. we snap!. And if diabetes is a so called “epidemic” then RIGHT now the government better screw their heads on straight….. Because when the (you know what) hits the fan, there will be a WHOLE LOT OF PISSED OFF DIABETIC PEOPLE who are just about to burn entire cities. Forget Terrorism, where your next problem, Bush.
Ok, I’m new here. As I read through all the comments and postings here I have to say “WOW, are you guys angry!!!”
CJC- I agreee with you about all the witch doctors and miracle healing people out there, it’s not true. The absolute best they can do is help some, they can’t cure. I had a coworker friend that was type1 for most of his life and knew he couldn’t live without his insulin (humalin back in those days), but every couple of years his church would tell him that he didn’t need insulin anymore….. a week later he was in the hospital. It seems that people are very happy to tell other to try things when they haven’t done or tried them theirself!
I also have to agree with everyone here with the statement “Where are the cures?” It seems that diabetes has been cured in test animals plenty of times, but it never seems to translate into a good human cure…… seems fishy to me. With all the cures I’ve read about I find it hard to believe nothing is useful in humans. Who cares if it is only 40% effective, let me try it!! I think insurance companies would even foot the bill. Why?, because it will increase theur bottom line if we’re not all suckling off the insurance teet for more supplies!!
Where I have to disagree with the consensus here is the workplace comments. I have been type 1 for over 20 years and have NEVER had a problem with doing what I had to to manage myself and my diabetes. Right now I work at the greatest job in the world and can take as much time as I need and the boss don’t even question it. Even if I have a reaction in the morning (which is popular with me lately) I just get in whenever I can and use “sick time”. My insurance covers everything I have ever needed to manage my diabetes. In the Spring this year I started pod type insulin pums that are even covered by insurance.
*By tghe way, ladies, I am single and have great insurance!! –LOL
I think it’s great there are places like this to vent and get another’s opinion and some insight as to what’s going on in the diabetes world! Let’s keep this post rolling for a few years to inform everyone!!
-Eric
Greetings people,
Re “Diamaxol”. My understanding is there are more people researching cancer than are dieing from it.
Reasearch is where the money is. If some little company comes up with a “cure” for any of the worlds major pandemics such as cancer, diabetes, aids etc the big companies close them down. They discredit them in many forms.
As for who has done the research on Diamaxol and who has heard of it. Who did the research on “it doesn’t work”? If the manufacturers label is correct in what they have placed in the product it will work. It will work because those plants etc have a track record of working.
I myself have thought of putting H2O into capsules to cure dehydration. No doubt some big pharmasutical company will come up with a reason it won’t work (till they have the patent on it)
OK I was being silly but you get my drift.
The logical question is who has taken it and what were the results?
CO INCIDENTLY when I tried the product I ad possitive results. I was taking 54 units of insulin per meal AS PER DOCTORS ORDERS to get my blood sugars under control. Each visit I was told to take more insulin. That was until I tried Diamaxol. I now have ten to sixteen units of insulin each meal and have done nothing else to change the readings.
I must admit though I do have a problem with the price. Buying ten bottles for $400US to have them on my desk is a lot of money but having to purchase a lot less insulin goes to offset the price.
Against my better judgement of buying American I tried it and I personaly am happy with the results.
Buying American means we in Australia don’t have the guarentees etc and safety proceedures in place we get with local products. “Buyer beware” as they say.
So far customs let me bring them in so I can assume no problem legaly. If it kills me I have no recourse on the company.
Hi again,
I am now heading towards my two year mark, wow… It does seem so much longer but yet It also seems like yesterday that I did not have it. I have pretty ok control, niether bad nor great. I have found the whole low carb eating so much better as I never knew insulin also made you fat… another great side effect.. Trying to lose the 15 kilos since diagnosis.
I have to say I have thought of trying the diamoxil but really did not want to waste my hard earned cash, I only have around 4 units breakfast lunch and 8 for dinner and 30 overnight… I have been told that is not much insulin.. Are there different severities (not sure of spelling sorry) for type 1. I mean, I have been told I am excellent.. Of course I have no complications but as I said only going on two years?
I am really pissed about people calling us angry and saying we need therapy, what we arent allowed to be angry about having our lives completely turned upside down… By having a future that almost guarantees complications… of being stressed about a hell of alot more than before diabetes.. We cant vent! I really think if you dont live with it, dont pass judgement on how we deal with it.
Its great to vent and hear others, it does not make me negative or depressed, it just makes some of the feelings that I have seem validated.. I love reading about others experience and all I get from it is how strong everyone is…
Thanks everyone..
Rachel
i Am mighty upset about the cessation of production of Ultralente. I have been unsuccessful on NPH, the insulin pump, and lantus does bad things to my concentration and memory. Lilly’s UL isn’t great but it’s the best I’ve found. I am currently using expired UL because Lilly isn’t making it anymore because there is not enough demand. Yet the people who use it really need it. I would suggest. Anyone with me to push some legislation to require production of it,. like they required some HIV meds to be made (generic) because of public health risks? Anyone else use UL or find a good alternativre? I used to have violent reactions on NPH but I’m afraid I’ll have to go back to that, after 10 or so years off of it. Any ideas? I am so frustrated, disappointed, upset about this.
seriously…its the western world we live in. We didnt just “develop” deiabetes…we were given diabetes. Through tainted foods and vaccines that the FDA sprinkles their magic ingridiants in…so that we are much more likely to develop a “managable disease” (remember, managable is GOOD for them as it yeilds big $$) Think of the big drug craze back in the 60’s. From then to now, any disease that can be realisticly managed (like diabetes) has NOT been cured…its totally curable! there isnt a person in the world who can convince me that theres not a cure. There is a top secret documented cure for type 1 diabetes locked in the vault to be braught out the day that our plagued population needs it…I’d estimate 20 years from now. As long as their making money and we keep putting up with it…guess what…we will still have diabetes! Think of it…just flip on your TV…that all you see is happy people in commercials talking about their new high-tech glucose meter. There are hundereds of thousands of people employed off of type 1 diabetes and BILLIONS of dollars made. So a “cure”??? what would a cure do to all these jobs and billions of dollars? this is why we are “the western world” We are free because we are trapped. The world turns from a few big companies. 1)food 2)drugs 3)-insurance …and they all convinantly work with each other. Curing diseases would literally stop the economic world from turning. This is where all the wealth comes from. It just wont stop.
*sighs*
Michelle: I had the opposite reaction to UL. It gave me some of the most severe hypoglycemic reactions I’ve ever had, when the long acting insulin peaked when what was leftover from my morning dosage coincied with the evenng dosage. The overlap made me seizure. Lantus, an insulin analog, lasts for 24 hours, but there have been problems with it as well among members of the type 1 population. I advise you to go to Scott Strumello’s blog (http://sstrumello.blogspot.com/) and read through the last two years of his reporting on the various foibles of the insulin cartel as well as the glaring holes and inconsistencies concerning treatment protocols for Type 1 diabetics. He talks about the financial and business decisions that have led to the withdrawal of Lantus from the market. As for your request for generic UL… did you know that there is no generic insuin (or any injectable, really) due to loopholes regaring drugs that are biologically engineered, the way Humalog and other more recent insulin analogs are created. The FDA has extended the patent protections for these drugs, due to lobbying on the part of Big Pharma. Lilly is a prime offender in keeping a generic form of insulin from being developed.
But then, this really shouldn’t surprise you, right?
Big D: at the risk of sounding like Scully “Mulder, I think you’re seeing conspiracies where there aren’t any”. The real reason there is no cure for Type 1 diabetes is an economic one, not one of government conspiracies. Unless you count the number of lawmakers who are being hounded and bribed at the moment to stop passage of a bill under consideration in the Senate (it is currently hung up in committee) that would allow for the development of generic injectable medicines like insulin. That I’d believe. Really, there is no secret cure out there in a vault being hidden by our government at Area 51 next to the alien bodies or the National Institute of Health. Our government bureaucracy can barely find its butt with its hands on a good day – it isn’t competent enough to orchestrate a coverup like the one you are describing. Not when there is money to be made from it. The majority of Type 1 diabetics are white and roughly middle class, given the statistics. There is money to be made by marketing to that demographic, or rather the terrified parents of that demographic, and they would no doubt pony up everything they owned to cure their child. Do you honestly think any pharmaceutical company that had access to something like that would pass on the chance to make beaucoup bucks off of it? While most of them wouldn’t want to waste money on R&D for a cure, if ther was one already out there, you’ve have a catfight among companies to be the first to file a patent on it. I’d take the rumors of a cure that is being witheld by the government with a big grain of salt.
Rachel: I find that being pissed and enraged enough to write lots of letters to my representatives helps a little to deal with the depression I have about being sentenced to life with this disease. It is entirely understandable that we are angry, considering the hurdles we are forced to either jump over just to survive. No Type 1 diabetic is at fault for their autoimmune condition and yet, we are painted with the same derisive brush reserved for those with Type 2. Who don’t really deserve it either.
I also find it very funny that diabetes seems to be a disease that people who do not suffer from it feel justified in acting as judge and jury towards those that do have it. It is seen as a disease that is generated by unhealthy habits, rather than by genetics. Thanks to the media and their current fixation on the relation of Type 2 diabetes with obesity, diabetes is being equated with other conditions such as alchoholism and drug abuse. The implication is that all diabetics are food abusers or fatties or self-destructive and that they need guidance from others who will ‘keep them straight’. There is no real sympathy for diabetics, as a whole, unless you are touched by the disease or have a family member that has it. There is also a great deal of ignorance about it as a whole; I give you the recent brouhaha aobut Halle Berry going from “Type 1 to “Type 2” with exercise and diet and better care from her doctors. it unleashed a flurry of nasty letters and comments from doctors regarding Ms. Berry, who I guess is really a Type 2 If she has managed to get herself off of insulin. No Type 1 can do that, and yet, here’s the media, feeding into the misinformation. I’m not sure who to really be pissed at, Ms. Berry (who ought to know better) or the reporters (who should have practiced some of the research skills they supposedly picked up in journalism school *rolls eyes*
There are a couple of books that might help: “Sweet Invisible Body” and “Diabetes Burnout”. You can find them on Amazon. Both books describe exactly what most diabetics, adults in particular, are dealing with regarding the treatment regime we as Type 1 diabetics are expected to follow and how hard it is to do so over a long period of time. It at least talks about the mental anguish, the dispari and the mental weriness that this disease brings with it over a long time.
So again, I ask… when will the diabetics in the U.S, Type 1 and Type 2, rise up and start demanding that things change? If you hate what you have to do to survive, if you hate being held captive by your medications and if you hate the lack of progress, what can you do about it? I guarantee, our ranks are growing, and if we make enough loud, angry noise, we will get the attention we need to make those changes. Imagine… a world where an insurance company can’t deny you coverage and will cover your supplies at an affordable rate. It can happen, but everyone who suffers from this disease needs to get off their asses and start screaming for change. Imagine a real cure, funded and supported by the government, and given away to cure the ill, just as Banting, the discoverer of insulin in 1920, did with the formula. He gave it away for a dollar, because he wanted it to come to market quickly. The number of diabetics of voting age is rising swiftly and if we wanted to, we could make our presence know in a way that hasn’t been seen before. 2008 is coming and with it the possiblity of at least health care reform.
Because if we don’t take up our cause, no one else will.
I suppose all but a few lucky ones in this world have a few deleterious genes that have have hung around despite natural selection. My daughter got Type I after taking several courses of treatment with accutane. No family history whatsoever.
Genes are not always destiny. Genes are instructions, the steps of potential recipes. In part it’s the raw materials available (minerals, vitamins, etc. ) plus what we do that determine which of those potential recipes is followed and how often. Is it possible for the islet cells of a damaged pancreas to recover? Why not? Has the autoimmune theory been proven ? From what I have read, no. There’s a lot more to know about this disease both in terms of genes and potential triggers. More $$$ for research would help.
It’s a tough disease to live with. No breaks. Always have to think, think, think about what you are doing.
Hi everyone and anyone. I came across this site just searching around for diabetes. I have read several of the above postings and must say I am impressed with the quality of writing and expression. I am 45 years old and have was diagnosed with Type 1 diabetes at age 14. So I have been doing this thing for 31 years. I have run the gamut. From complete denial and rebellion to survival mode to getting by to doing ok and now I am excelling. When I got it back in 1976 I had to pee on a strip to see how much sugar I was spilling. Meters came out sometime later and I did not much like testing. I hated to see the highs. Well, only because I have had at least one guardian angel watching over me I stayed alive. About 5 years ago I made a decision to get better and I have gotten tremendous results. I have reduced my A1C’s from around 9 to under 6.5 with very few lows. I have reduced diabetic retinapathy that I was slowly acquiring. I went on the pump about 3 years ago and that was key. I work out hard. I went through an intensive yoga training program and I do Bikram yoga everyday. I have put more of my focus on food and my relationship to it. I have used acupuncture, cranial sacral therapy, massage and other hands on work to process emotional issues and balance my body. I have decided that I want my life’s work to be in the area of helping others with this disease. I have been a corporate trainer all of my career. My emphasis has been on training development and I have been thinking about and writing down my thoughts and insights on how to approach this disease. I have identified a 5 step process as the core of my training. It follows a process that I was introduced to by one of my mentors in training. The growth process is……1. Confusion 2. Exploration 3. Incubation 4. Illumination 5. Celebration. I have mirrored this to specifically address diabetes and it goes like this 1. Confront 2. Understand 3. Accept 4. Master 5. Triumph. This 5 step process in not linear; it is cyclical. We are constantly cycling through all 5 as we grow. Through my 31 years of living with Type 1 diabetes I have learned a great deal. I want to share what I have learned. The disease can only be mastered by mastering oneself. By a commitment to growth and a knowing (Faith) that the end result is LIBERATION. Yes, we will triumph over this disease. The doctors can’t do it. The researchers can’t do it. We must do it and we can. To those of you thinking about checking out. I understand. So much of my life has been with me sitting with my back against the wall feeling like there was no hope and that I was helpless in affecting the change I needed. Don’t give up yet. The key to licking this disease is your attitude. The way to develop your attitude is to accept that you are 100% responsible for it. “99% commitment is a bitch, 100% commitment is a cinch.” Attitude is the lynchpin. After that is a little training in insulin dosage, food and exercise. It is sometimes best to begin to transform your attitude with the help of “workouts”. The mind and body are one. Begin to transform your body by an aggressive approach to your working out and your mental habits will become softer and easier to change. Type 1 diabetes injects tremendous doubt into the physical, mental and emotional body not to mention the family/relationship system. It is our mission and life long journey to overcome this doubt and replace it with certainty. The Kabbalists say that doubt is the enemy. The Christians put much value in faith. I, personally, have not been able to commit to a particular model of Truth. But I think they are right. God bless…
Michael
I have found the key to go control Yoga!!!
I think that most of us type 1 diabetics are sick and tired of hearing or reading about ‘promising research’ year after year and decade after decade which all amount to nothing. I’ve had it since 1973(aged 9) and it has thoroughly screwed up my life(career and money) no matter how hard I have tried to control it. I do appreciate the person who discovered insulin and the people who made the glucose monitors possible. I haven’t tried any pumps as I do not want needles in my flesh permanently. One thing I can say though is that I am only interested in a cure when it happens. I don’t want to hear about any more promising research even if leads to a cure. I’ve been hearing and reading about promising research for almost my entire life and no results yet. I do not have to worry about passing diabetes on to a new generation because women do not want to procreate with someone on disability support.
Peter: Gads, I’m really sorry about your diagnosis. In 1973 the treatment protocols were pretty primative. I was diagnosed in 1980, at the age of 11 and it was only in early 2003 that i was put on modern insulins. The endo I was seeing at the time was an incredible jerk and didn’t understand why I was depressed about some of insulin’s side effects, such as severe hypoglycemia episodes and the inevitable weight gain attributed to the kind of tight control they want you on these days. I agree with you – the media (who often get the facts about diabetes wrong, particularly about type 1 diabetics) is quick to report advances that are not really advances but exploratory research. Again, I think it is nifty that injecting capecisin into the nerves surrounding a beta cell can reverse type 1 diabetes. I have yet to see anyone actually DO anything with this knowledge. There are millions of adult Type 1 diabetics that would jump at the chance to undergo experimental procedures if there was the slimmest chance of success. Sadly, there doesn’t seem to be either the will or the money to put research results to work. Take for example, C-peptide, a byproduct of the body’s insulin production. Turns out that most of the complications we suffer are due to the lack of C-peptide, rather than a lack of tight glucose control (though hyperglycemia doesn’t really help either). Now, can we get C-peptide as an injectable? You would think that there would be a ton of interest in keeping those of us who require support from the state due to our ill health off the dole or Social Security. but no – there really isn’t any desire on the part of pharmaceutical companies to manufacture something for such a small sliver of the total diabetic population. Type 2’s don’t need it, so it won’t be created, because it wouldn’t be profitable to do so. The logic of the U.S. healthcare system (or rather, the lack of it) stuns me sometimes. The idiots running it would rather dump tons of money into treating symptons rather than curing the disease and saving everone, including taxpayers, a ton of cash. Unbelieveable. Sometimes I think this country deserves all the misery it creates for itself when it comes to healthcare, the reward for the inaction, passivity and apathy of its populace, as well as its inability to value prevention measures like diet and exercise counseling and vaccinations over expensive late-term treatments such as transplants.
Michael: Yoga is great. But it isn’t a cure and the only thing that will keep you alive is, ultimately pumping or injectin insulin. I would say that if it makes your sugars better and you feel better, do it. Just don’t try to substitute Yoga (any form of it) for real medicine, blood glucose monitoring and constant vigilance. Good luck.
my son has type 1, found out nov 15/07. he,s 11 , were getting use to it, he does all his own testing, fixs his lows, we do all the injections, its hard, but there are a lot of worse things that he could of got. ya i spend alot of time on the net, looking for a miricle. have great support from the
kids hospital in edmonton, alberta, i met the docter that does the islet cell transplants.
not recomended for young kids at all.
i only have the 1 child and he,s spoiled, but so what, I was working at 12 (farmer) never got to do things when i was young, and i,m sure gona let him do what i didn,t.
i,ll work till i drop dead for him
My son was diagnosed diabetes type 1 at age 11. He is now 45, a veterinary doctor, married with one child. I am worried as I see now he is not doing so well, had eye surgery some time ago, and is not seeing well not withstanding, plus he seems quiet lately, for he was always full of zest. I looked on the Internet and found a site with some recommendations, based on people who have TOTALLY CURED type 1 no matter after 50 years with the condition. Even if many people lose hope and say there is NO CURE, why not? This site should be examined by those interested, especially the ยPossible Cause #3: Scar Tissue or Fibrin or a Thick Mucus Covering the Beta Cells.ย In our case, it fits, as I always wondered why my son never got the usual childrenยs sickness, (mumps, etc.) which his siblings got. From that site, I got to the site of Dr. Wongยs article. WOW!
You can look at:
http://www.cancertutor.com/Diabetes/Diabetes_Type_I.htm
Kolasa – I am terribly sorry your son has had to suffer from the complications caused by this disease. However, if you read through my past posts, you will note that THERE IS NO CURE FOR TYPE 1 DIABETES. Aside from the New Age snake oil salesmen and the dippy alternative medicine pushers, another group that really pisses me off are those that claim that they have some super secret cure that the government just isn’t telling people about and that they have cured numerous Type 1 diabetics of their condition. Some of these jerks even claim to be doctors and they all charge money for the info.
Again, I say to them, trot out your cured Type 1 diabetic, prove to us via a verifiable medical history and the testimony of two unaffiliated doctors or endocrinologists that he person that they are using as an example of the cure was indeed a Type 1 diabetic and then have them give a detailed outline of just how such a miracle was accomplished. Pardon me for rolling my eyes. These people want your money and they will tell you whatever you want to hear to get it. I can’t stop you from giving it to them, but I can at least warn you that if you do hand them your cash for their ‘cure’, your wallet will be lighter and your son will still be a diabetic. I hate to burst your bubble – I don’t like taking any hope away from people who so desperately want to believe that there is something out there that can cure them, but it just isn’t so right now. I wish to hell there was, but there isn’t. All the wishing in the world won’t do anything about getting a cure to your son faster.
There is an underlying theme to all of these claims of a cure, whether its through Chinese medicine (an oxymoron if there ever was one – I’m sorry, but the body parts of endangered animals such as bears and tigers ground up as a cure for impotence benefits only the poachers), or Yoga or some wild claim that someone claiming to be a doctor at Area 51 puts up on the internet. It is playing to the wishes of people who have been promised that there is a cure ‘just around the corner’ time and time and time again by the medical establishment seeking to cover it’s butt and trying to keep attention from the fact they haven’t been working as hard as they could have over the years for a cure. Hope, in my opinion, is a four letter word that is bandied about by the press whenever they want to make it seem as if there is some breakthrough new discovery out there (it sells more papers and more advertising) that will meet those promises every Type 1 diabetic has been told since they were diagnosed. You know the promises… “We’ll have a cure by the time you’re grown up!” or “A cure is just around the corner! ” or “We’re so close to finding a cure… please donate money!”
Yeah… those promises. I’ve stopped believing in doctor’s promises. I’ve also stopped believing in unicorns, fairies, leprechauns and the Easter Bunny, though I think that my belief in the latter stuff ended later than in doctor’s platitudes. Those same doctors said “Hey the needle they use for a HA1C won’t really hurt…”
Again, pardon me if I roll my eyes. I’m a cynic. I’ve seen too much of what humanity is like – greedy, selfish, opportunistic – when money can be harvested from desperate parents of sick children, or the ill people themselves, for conditions with no known cure. What really gets me is that these scam artists like to post their little adverts using viral marketing techniques on blogs that are meant as support or informational outlets for those with chronic and uncurable conditions. Somehow, diabetes seems to attract the biggest proportion of online hucksters peddling false ‘cures’, but I’ve seen similar crap posted on forums for those with Huntington’s and for parents with a children affected by Down’s syndrome (good grief – can you believe there are people out there that have been convinced that they can cure their child’s Down’s syndrome with herbal ‘cures’?) These little postings are usually written from the perspective of someone who cares for someone suffering from the condition in question, who then ‘stumbled’ upon a website with all of the information about a ‘cure’ while searching for information. Of course, there is ALWAYS an enthusiastic testimonial about how it has s cured or ‘greatly helped’ the loved one in question, and there is usually some ‘mock’ scientific mumbo jumbo that sounds real enough to the layperson (though not to anyone who has actually graduated from sixth grade :-P) attached to give it enough credence to get folks to go to the URL listed in the post.
Come on people, either use the brains that evolution gave you or head back to the trees. As a fellow diabetic, I’m angered, mostly because these shysters assume I’m a complete cretin and will send them my hard-earned (and I do mean hard-earned!) money in exchange for some fairy dust. I was introduced to the reality of my disease and the understanding that it would kill me at a very young age. I am not willing to hide my head in the sand and pretend this disease is not a killer. I would also rather stare my own death in the face and say, ‘Well, I’m screwed, I have Type 1 and it will kill me in a horrible fashion’, rather than have some bastard who promises a false cure for it rob me blind before I die. I refuse to spend my time chasing false leads on the internet for cures when the real cures will only be achieved through hard science, political action and using these two things to create an economic incentive to cure us. Stand up and fight for a real cure, not smoke and mirrors from some slimy online witch doctor with a website and an official looking logo. The only miracles out there are the ones you make and take for yourself.
I guess everyone has issues. It’s just that some of us have more, and everyone handles them differently. After reading/skimming thru the comments & feelings of everyone else, I actually feel like I’m not such a genetic freak or being unduly temperamental when I have one of my occasional outbursts of ‘I’m so tired of doing this/why me?/Lord, I can’t handle anymore/I wish I could be normal’ spiel.
Sometimes, I hate being me. I do my pity crying. I do my ranting. Then I think about what’s good in my life: the people I love- family & friends, my job, my home, the family dogs, my favorite stores/places, my favorite music & shows. And just daydream of what places I’d like to see or things that I’m still wanting to do or try. Then for some reason, sayings will pop into my head that remind me to thank God for what I have and what I can still do. ‘I was sorry that I had no shoes until I saw a man that had no feet’ or something like that! One of my favorites is the footprints story. I guess because I’ve experienced the feeling of Jesus carrying me during some of the rougher patches in my life.
Unlike most of you, I have type 2 diabetes. But like you, I was destined to have diabetes through genetics whether I was skinny or fat, even with daily exercise & eating healthy foods. Both my parents (one fat, one thin) have diabetes 2. I just developed my diabetes at an earlier age because I also happened to be born with metabolic/endocrine disorders. I guess I would fall under that hormonal imbalance category. I’m just the only recessive genetic throwback in our family.
I was born fat. Really! The only baby picture of me is when I was first born, taken at the hospital. I had a full head of hair that my mother could braid, and my face & body were all “puffy fat.” I think I looked like a sausage-shaped pig with squinty slits for eyes. My face had no discernable features other than my nose and mouth. Mother said I was so cute as a baby, people used to ask to adopt me. Doubtful. That was just one of the things she would say whenever a baby picture had to be taken to school for some dumb writing project or guessing game, & that picture was the only one I had.
For a little while, I became less fatty before starting school. People used to tell me that I was just a little plump, and that I’d probably grow out of it. I also used to wake up at 3 or 4 in the morning, ready to jump rope or play with my toys until the rest of the family woke up around 5 or 6 AM. Sometimes, my big brother would be woken from his sleep by me running down the hall with one of my two most favorite, special toys – a fisherprice telephone on squeaky wheels with moving eyes and ringing bell that trilled at every other step, or another fisherprice toy that consisted of a wooden stick attached to a clear, plastic dome containing several colored balls that would make wonderful popping sounds- like popcorn! as I ran helter skelter through the house. I loved them for the colors & noise, and the ease with which I could move them, since both toys were on wheels.
When I started school, I didn’t have as much time to play. I started putting on more weight. But it was after 2nd grade, that I gained a lot. And for some strange reason, my mom started making me wear two undershirts and really loose tops by the end of my 2nd grade year. I didn’t know it, but puberty was about to begin for me in 3rd grade. It was not fun. It was awful.
By the time I finished 4th grade, my dad got told he had to lose weight or he’d die of a heart attack. So off we all went to exercise at the park every morning. I was still gaining weight and my mom started to worry about me. Up to this point, the only kid to escape the fat gene was my brother. He was just normal. He didn’t gain weight from eating the school lunches like I did. But he was able to eat a lot of food, just like Mom.
In 5th grade, I was tormented by other kids, mostly girls. I would walk to and from school enduring the mean jokes and comments. I stopped answering the phone. I cried to myself every night and prayed for God to ‘please make me normal.’ My dad gave me his exercise bike to keep in my room. My brother gave me his old dumbells. Every morning before walking to school, I did my routine of warm-ups, stretches, weights, and either aerobics or bike riding while most of my peers were asleep in bed or watching television. Every evening, I walked with my mother or rode my bike.
My dad found diets for us to follow. Gone were my Cheerios and Corn Flakes for breakfast. Gone were cheese, whole milk, white bread, tortillas, and anything cooked with oil. Instead, we ate unsweetened oatmeal with bits of apple & cinnamon, or 1/2 a grapefruit with a hard-boiled egg and a slice of whole wheat toast. Mom packed me lunches. Instead of a whole sandwich, she packed only 1/2 a sandwich. Instead of raisins and nuts, she packed only an apple or 1/2 a banana. Instead of fruit juice or kool-aid, she packed nonfat milk. And for dinner, she’d make me broiled chicken (my favorite) or fish with a salad or mixed vegetables. I stopped gaining weight, but I didn’t seem to be getting any smaller. My dad decided I probably needed to run. Now, when we went to the park, I would jog with him once around the path before joining my mother on her walk while he went on to run the various trails. I lost only 10 pounds.
After a while, my parents were beginning to see that losing weight was really a struggle for me. But we still didn’t know that there were real medical reasons for it. One day, my dad just took me aside and told me that it was okay. God created everyone different. I might not ever be able to be thin, but I could keep my weight from ballooning up if I kept exercising and eating healthy, and that was important because he didn’t want me to have his health problems when I got older. It didn’t stop kids from completely taunting me, but after that I realized I didn’t have to be ashamed. I made the decision to continue to deal with my cross as best I could.
It was in 8th grade when my body AGAIN! began to gain weight. I went up to 200 pounds. My mom took me to a doctor. She was new & when she discovered that my ‘monthly times’ had always been scattered, she cocluded the fat cells had stored the estrogen. I was told to lose weight. They began by telling me what to eat and to start exercising. They were stunned to hear from me what I already had in place. One worker refused to believe it. They tested me for diabetes. It was negative. My dad decided taking me to the doctor was a waste of money.
Starting in 9th grade, I simply cut out the only things I had left. I gave up salt, all oils, dressings, ketchup, mustard,mayo,jam, honey, margarine, butter, all fruits except apples and grapefruit, nuts, seeds, all meats except chicken & fish, all junk food completely. No more wheat pancakes with applesauce or lite syrup, no once-a-week cookies or graham crackers, no holiday candy, no birthday cake, no ice cream (which upset my dad who liked to take the family for a sundae at least every few weeks), no gum. I now added whole wheat puffs (no sugar) with nonfat milk for an occasional breakfast to break up the monotony of my usual. I kept pretty much the food choices I’d eaten before, but now I just ate less of it at each meal. For example, I’d eat 1/2 a slice of toast or none with my hard-boiled egg. Sometimes I included the grapefruit, and sometimes I didn’t have it until lunchtime. If I ate oatmeal, I would leave 1/2 of it in the bowl. I ate a plain baked potato for lunch and 1/2 an apple or grapefruit. Sometimes I had the school salad bar and I would splurge by allowing myself raisins & sunflower seeds or a bean burrito or bread roll with lowfat milk. That was my junk food.
Being in high school, I actually had enough time during lunch to fit in 30 minutes of walking around the campus with my very understanding best friend. I kept my morning exercise routine, and I continued to walk to school unless it was raining. I also had a PE period every day and walked home after school. My mom continued to do walks with me after dinner. We increased our time from 1 hour to 2-3 hours each evening. By the time I became a junior, I had lost 40 pounds.
Just when I was feeling pretty good about that, I started breaking out in cysts and more severe acne. I also began growing a few long facial hairs. My dad decided to send me to an electrologist to have the unsightly hair removed. He was hoping I’d get a summer job and wanted me to look presentable for interviews.
The electrologist actually gave me a job as her secretary for the summer. When the school year
started, her sister took over my treatments in exchange for some light housekeeping on the weekends. She was concerned about my acne, so she sent me to a dermatologist that she knew. And with that fateful recommendation, my life mystery was on its way to being solved.
Poor dermatologist! She was the first one to tell my parents that my acne wasn’t normal. My parents were upset to hear that I definitely had some type of blood disorder. Nonetheless, an appointment was made for me to be analyzed by an endocrinologist. Once there, after being questioned and having my blood tested, the endocrinologist had even more news that upset my parents. Apparently, I not only had a hormonal imbalance (passed on through recessive genes from both parents) known as polycystic ovarian dysfunction, but I apparently also had been born with an abnormally slow metabolism. In other words, he could fix the lack of estrogen with pills, but my body would always fight against losing fat.
Additionally, because of the lack of estrogen hadn’t been taken care of sooner,
my adrenal gland had responded by overproducing the male hormone, testosterone. Hence the
acne and facial hair. I would need to be put on an additional medication to put my adrenal gland to sleep. It was awkward for me, sitting there, while the doctor chewed out my parents for not taking me to a doctor sooner. And my parents trying to blame the other’s genes for my problems. I tried explaining that a ‘recessive gene’ meant that both of them actually had passed it to me. That seemed to go over their heads. I just wanted them to stop fighting.
That doctor decided to put me on a liquid diet called Medifast. I figured at that point, it couldn’t be too much harder than what I already did. The first 32 oz drink was made with water because we didn’t have any diet soda at home. The smell alone was enough to make me gag. I held my nose and tried to swallow it down. I tried to sip it. Bad idea! The taste was even worse. But I didn’t have a choice. My parents had already paid for it. My dad’s insurance refused to cover that as well as my hormone replacement pills. Back then, I guess my medical issues weren’t recognized as such by most insurance companies. So I chugged it down asap, then ran to the bathroom to rinse my mouth out because I was afraid the taste would make me vomit it back up, and then I’d have to drink another one.YUCK.
It took 6 months for me to lose 50 pounds using the Medifast. After the first month, I lost about one pound a week. I increased my exercise time from 3-4 hours to 6-8 hours once I was on summer vacation. My parents decided it was best for me to not work a summer job. Well, once I reached the goal weight and I had to eat food again, I developed eating disorders. I became bulimic. I didn’t have it in me to throw up, so I would overeat then spend the rest of my day or evening exercising it off. I never used to eat like that before that diet. When I told the doctor about my problem, he just said to stop doing it. And when I began having side effects from the medications, he told me it was all in my head. Not surprisingly, years later he was sued by his patients for malpractice.
After two years of being told my symptoms were all in my head, I decided to insist on a blood test. He sent me to another doctor. This doctor ran the blood test first and discovered that I had hormone levels that were two to three times higher than they should be. I switched doctors permanently.
I went through severe withdrawal symptoms from the adrenal gland medication. It took more than 15 years for me to be able to go off of it completely. My adrenal gland had to “wake up” enough to function without sending me into a coma. As we worked to lower the hormone levels, I discovered that any form of exertion made my heart beat too fast & my body seemed to give out on me. I had to lie down and sometimes I fell asleep before my body could do anything else. I had to give up my exercise. The estrogen levels eventually became normal, and the withdrawal symptoms lessened except for fatigue, occasional dizziness, heart palpitations, nausea, and muscle spasms & cramps.
I married, finished my education, and had ballooned up to 300 pounds from not exercising. One day, I just cried. With my husband’s support, I started to begin walking. It was still touch and go for me because there were days I could do more and days I couldn’t do anything. After a while, I was able to exercise daily. Eventually, we moved to a place that had a workout room.
The first time I got on a stair climber, I could only do 1 minute. But I had a goal. I decided I was going to keep trying until I could do 5 minutes. When I reached that goal, I aimed for doing 15 minutes. When I made that, I decided to start the elliptical for 20 minutes. For a while I went back and forth between the two machines. Eventually, I worked up to 30 minutes on the stairclimber, 20 minutes on the bike, and 30-45 minutes on the treadmill or 45 minutes on the elliptical and 40 minutes on the treadmill. I got back down to 200 pounds.
We joined a gym, were given a schedule by a trainer that included weightlifting and a dietplan. For the first time in my life, I was told to take two cheat days a week. And eventually, the weightlifting allowed me to have the freedom to exercise 3-4 hours 3 days a week without gaining weight. But
I had to do more than that if I wanted to lose weight.
For a while this worked for me. It seemed my metabolism was changing. I began to lose weight again without adding in more time. It was so gradual, that I didn’t even notice it until one day
one of my coworkers mentioned it. I thought she was just being encouraging until I went to buy
new clothes. I WAS smaller. We didn’t have a scale, so we bought one. My weight had gone down by another 20 pounds.
Then I developed asthma. Occasionally, I’d coughed after working out, but I just thought it was my allergies. When one wouldn’t go away, and I was experiencing pain in my back, I consulted my doctor. I was given an inhaler. I was given an allergy test. We had to give up our cat, and I became sensitive to anything scented. My asthma got worse before it got better. I discovered that I had to give up the elliptical when I had an asthma attack from using it. People wearing deoderant, perfume, cologne, and the employees using cleansers on the equipment all caused me to have a reaction. Car exhaust, smoke from fires or smokers, detergents, shampoos, soaps, lotions, and any strong scents were enough to cause an attack. Not surprisingly, without the elliptical and having to cut back on the intensity of any exercise, I put the 20 pounds back on & developed high blood pressure.
If that wasn’t enough, on a trip to visit my sister (a vegetarian) we discovered that I was
also allergic to soy. I now learned just how many foods contained soy lecithin, soy flour, and soybean oil. Thank goodness for places like Whole Foods!
The following year, we discovered that I had developed diabetes. I was put on pills, and I started to lose weight again. After a few years, I developed a sensitivity to the pills, gained weight again, and was feeling fatigued most of the time. My blood test showed that my thyroid hormone was low, but not low enough for the medication. My cholesterol was too high, so I was put on Crestor. Eventually, I had to be put on a thyroid medication. And it wasn’t the diabetes that caused it.
I developed a sensitivity to the second set of diabetes pills after only half a year. Now I take the insulin pen each evening. But now, thanks to the thyroid medication, I feel a lot better and my body is back to losing weight again. My kidneys and liver still need to be closely monitored.
I can’t take Crestor, so now I’m trying Cholest Off. I’m also taking Multi -betic. I exercise each day, but I try to do 15 miles on my bike 3 days a week for now. I measure my blood sugars before I eat anything. My Freestyle monitor makes it much more tolerable since I can test sites other than my fingers!
Unlike you, my body doesn’t require the same amount of food to function. What the average person eats for breakfast is all that I require. I figure that breaks down to basically one bread, one meat, one dairy, one fruit, and as many vegetables as I like if they’re not high glycemic index foods. Naturally, I don’t always stick to it. But I am much more motivated to keep to it when I check my blood sugars. If I’m hungry, I eat. If I’m not, I snack on something that won’t boost my sugar levels a lot. I have to eat something because I take other medications that upset my stomach if I don’t.
There are times when I feel angry because I feel powerless to stop the consequences of diabetes. But I also feel that I can’t give up. I’ve worked too hard to get where I am right now. So I will continue to fight for my life, and I refuse to give up all hope. After all, God’s already blessed me with still functioning organs and life despite the adrenal gland medication. [It kills 15,000 people annually].
I am here for a reason. Everyone has a purpose. I didn’t set out today thinking I would be writing about myself to complete strangers. All I was doing was looking up more info about diabetes and the research about ways to improve my sugar levels. But here I read your stories, your frustrations, and I can relate to it only from my own experience. I know what it is to be different from what must seem like “everyone normal.”
I remember my friend, Julie, who had type 1 diabetes. She died when she was 18. Not from diabetes, but from a car accident on a local freeway. She always told me to be more adventurous, take more chances, rebel once-in-a-while, and most of all, to live a lifetime everyday. That was Julie. Always living a lifetime worth remembering. So in her honor I say, “Today is the first day of the rest of my life. And I intend to make it count. ”
My son was just diagnosed with Type one on December 4 2007. I wonder how many people have tried Diamoxal? I would like to hear from anyone that it has worked for. Has anyone heard of taking b3 in the niacinamide form. I have been reading all the books I can get my hands on. I have read that taking B3 in the niacinamide form has cured some Type 1 patients and is more commonly used to prevent Type 1.
Elizabeth: I’m sorry to hear about the diagnosis. I have been in a similar situation for four years. I would just say: be careful of the information that’s out there. Read as much as you can, and get good references. I’ve not heard of Diamoxal, but a cursory check reveals lots of contradictory data: http://www.diabetes.co.uk/newforum/topic.asp?TOPIC_ID=36.
I agree with Peter lane. Sick and tired of hearing the propoganda about “breakthrough” research every 5-10 years. Its always the same thing and has been since the discovery of insulin. “CNN HEADLINE NEWS: Reserchers at XXXX university have reversed type 1 diabetes in mice with hot peppers or kemo therapy or TB drugs or whatever” WTF do I care? I KNOW they will amount to nothing. They always say “will take 5-10 years before human trials will begin”… And guess what happens after 5-10 years? A BRAND NEW “breakthrough” from a completly different approach that conviniantly will take ANOTHER 5-10 years for human trials…and we never again hear about the old “breakthrough” from 5-10 years before. They have us on puppet strings, beleiving they are actally working towards a cure when the last thing this government wants is to cure diseases. If fact, they are making more diseases so they can prescribe super expensive drugs for minor stupid things like acid reflux disease or ADD or restless leg syndrome that “for some reason..hmm” did not exist until recently… Its easy for a chemical to make a disease, and we live in a chemical world. Take a drug for one thing and a few years later that drug caused another disease wich needs ANOTHER FU*&%NG DRUG and it keeps going… Ever see those people who have plastic organizer boxes for all their meds? or people who have medicine cabinets with anywhere from 2-10 different prescribed meds? Its ridiculous you dont need to be drugged up like that come on! . Remember everything is MONEY, curing a disease puts the brakes on a whole lot of sustained annual revenue to a whole lot of people (BILLIONS and BILLIONS of dollars) I am 26, and i can say with confidence that If I live until I am 70 years old, I will die with type 1 diabetes. I would like this cold hard world we live in to proove me wrong, but this world does not care. Try to move on with your life and don’t pay attention to “breakthroughs” and “promising research” because its BOGUS…
I agree with Peter lane. Sick and tired of hearing the propoganda about “breakthrough” research every 5-10 years. Its always the same thing and has been since the discovery of insulin. “CNN HEADLINE NEWS: Reserchers at XXXX university have reversed type 1 diabetes in mice with hot peppers or kemo therapy or TB drugs or whatever” WTF do I care? I KNOW they will amount to nothing. They always say “will take 5-10 years before human trials will begin”… And guess what happens after 5-10 years? A BRAND NEW “breakthrough” from a completly different approach that conviniantly will take ANOTHER 5-10 years for human trials…and we never again hear about the old “breakthrough” from 5-10 years before. They have us on puppet strings, beleiving they are actally working towards a cure when the last thing this government wants is to cure diseases. If fact, they are making more diseases so they can prescribe super expensive drugs for minor stupid things like acid reflux disease or ADD or restless leg syndrome that “for some reason..hmm” did not exist until recently… Its easy for a chemical to make a disease, and we live in a chemical world. Take a drug for one thing and a few years later that drug caused another disease wich needs ANOTHER FU*&%NG DRUG and it keeps going… Ever see those people who have plastic organizer boxes for all their meds? or people who have medicine cabinets with anywhere from 2-10 different prescribed meds? Its ridiculous you dont need to be drugged up like that come on! . Remember everything is MONEY, curing a disease puts the brakes on a whole lot of sustained annual revenue to a whole lot of people (BILLIONS and BILLIONS of dollars) I am 26, and i can say with confidence that If I live until I am 70 years old, I will die with type 1 diabetes. I would like this cold hard world we live in to proove me wrong, but this world does not care. Try to move on with your life and don’t pay attention to “breakthroughs” and “promising research” because its BOGUS…
To the BigD,
You sound like a person who lacks hope. There really are many positive things going on these days. Keep in, mind that a cure for type 1 is a universal desire. Countries with universal health care and many universities really wish to find a cure because of the savings heath care systems.
When I was your age we didn’t have computers, now we can’t surive without them. I’m sure we’re going to figure out how to use them to find cures for autoimmune diseases. With all the money and emphasis on AIDS I’ll bet we’ll find a cure for type 1 accidently.
Can the negative vibes, that going to be a worse problem for you than you blood sugar, Remain positive, keep you hope of the future and and be healthy sceptic.
To the BigD,
You sound like a person who lacks hope. There really are many positive things going on these days. Keep in, mind that a cure for type 1 is a universal desire. Countries with universal health care and many universities really wish to find a cure because of the savings heath care systems.
When I was your age we didn’t have computers, now we can’t surive without them. I’m sure we’re going to figure out how to use them to find cures for autoimmune diseases. With all the money and emphasis on AIDS I’ll bet we’ll find a cure for type 1 accidently.
Can the negative vibes, that going to be a worse problem for you than you blood sugar, Remain positive, keep you hope of the future and and be healthy sceptic.
My daughter turns three in a week, and she was diagnosed with type 1 yesterday. After reading most of these posts, I feel even worse. I asked all the questions related to many of your concerns – ie long- term health. And all the doctors insisted that proper management should result in a normal active life without any complications. Either I’m being lied to or many of the posters here have not maintained good control of the disease. However, I do understand that advances in managing the disease of come a long way even in the last 10 years. How should I feel? I’m very scared. She’s just a baby.
Hi PMez,
I am 31 years old and I was diagnosed with Type 1 Diabetes a little over 16 years ago. It is a horrible disease and God willing there will one day be a cure but do not give up hope! Learn as much as you can about Diabetes so you can take the best care possible of your daughter. Make sure she eats right and excercises as much as possible. Diabetes is VERY difficult to live with but the key is…….you ARE able to LIVE with it. However difficult it may be, it is NOT a death sentance. I stumbled upon this blog while searching for information about the latest breakthroughs in treatment methods or the search for a cure. I’m glad I did because I’ve been able to read about other peoples struggles with this disease. I’m not alone and neither is your daughter. It may not happen in my lifetime but I’ll be bold here and tell you that your daughter will be cured one day. Keep the faith.
I am a diabetic type 1 and have had it for about 8 yes now. I am currently experimenting on a Organic route to fighting this disease. My goal is to eat at least 90 percent of my meals organic. This consists of lots of veggies, fruits, chicken, 100 percent whole wheat bread and minimal sugars. I feel that our diets have strayed so far off from what it is really meant to be like. We abuse our bodies by not placing the proper, naturally intended essential nutrients that we need.
Since we really do not know what causes diabetes, we are only left with theories; Autoimmune, virally influenced, genetic….just to name a few. My personal thought is that it is HUGELY a factor from our eating habbits. I recommend that you study up on all of the chemicals (I like to call poisons, and I will explain this later) that are added to “processed foods” in a typical American diet. Some examples: diet soda conatins aspartame, which is basically the same as sweet n low. This product is known for causing cancer. White bread products have alloxen in it which studies have tied that into destroying betts and islet cells in the pancreas that produce insulin. Basically if its not organic, chances are that it either has unwanted chemicals, hormones, pesticides or modified substances that WILL harm your body. You might think this is crazy, but look at the cellular level. Our cells are very fragile and can easily be damaged, mutated or even destroyed by these poisons. We were originally put on this earth to consume its natural products. Not some of the stuff that is in our market today. Our bodies are made to heal themselves if supported by the right nutrients.
I still plan on taking my insulin while working on this experiment, but my goal is to lower my insulin intake gradually and hopefully, if my results are promising, to be rid on my artificial insulin dependence. I am not sure how long this will take and I do not encourage anyone else to stop their medications. However my first day on this diet I saw a drastic change in my energy level an my blood sugars were just under 100. I’m am also 24 by the way and. Nursing student. I hope this is helpful to anyone out there
MP,
How do you plan on eliminating your dependance on artificial insulin when your pancreas doen’t produce any? By diet alone you are going to “jumpstart” your pancreas???
I think that its these ‘magical organic’ foods she is raving at that are going to ‘jumpstart’ the pancreas and increase beta cell production so much so that it’ll overwhelm the autoimmune disease!
You do make a valid point, but let me clarify basically what I was saying. By the way I am a guy. My goal is to cleanse my body of the polutants that it has been filled with so my bodies cells can heal effectivley. The body is meant to heal itself. That includes the organs as well (pancreas). My idea: if you put vegetable oil in a car, its not going to run. It need the propped components. Same as the body. This may take months or years to accomplish, or it might not happen at all , but at least I will be at my healthiest state. Like I said this is just an experiment. Who really know what our bodies are capible of. We have only begun to scratch the serface of the bodies functions. There is so much we don’t know. At least I am making an effort, and if I fail, then so be it
Also there is an interview on youtube with Halle berry in which she stated that she “used” to be diabetic type 1. I don’t have the link but you can look It up if you like. Just kinda interesting. Plus I have heard of people who have out grown it.
Again, I hate to burst your bubble, but the medical community have said there is no way you can ween yourself off of insulin if you a type-1. If so, then you’d hear about people ‘curing’ themselves all of the time.
Halle Berry *could* be type-1 diabetic; however, she could be in the honeymoon phase where she still has some beta cells left (apparently honeymoon phases can left for weeks, months and even years after diagnosis). In moving to a VERY low carb diet it is possible – if you still have beta cells left. However, the autoimmune disease is still attack your body and eventually all the beta cells will be gone. Unfortunately for Halle, she will have to go back on insulin when this happens (if she is a type-1 diabetic).
Just a note, I was able to control my blood sugars through diet when I was first diagnosed with diabetes; however, I was eating alot of salad. And you know, You don’t make friends with salad.
I’m 61 and was diagnosed with type 1 just under a year ago. I’ve just found this site today and have read the rants. I agree with most of them. This curse has totally destroyed my life and I just don’t know what to do. I’m on two types of insulin,can’t lose the rest of the weight, etc. etc. I’ve had no real help from my so-called health team as I have more problems then ever. And of course the usual problems with the lack of money. And no one will tell me how or why I got this curse. I can see ionly one way out but I don’t know how much to take. Good luck to any of you that candeal with this life sentence.
MP…I like your post. This is exactly the kind of thing I want to spread to people who read this. Our chemical society with processed/boxed foods with “chemicals” (or, POISONS) sprinkled into them. Thats how the western world works. If there was no need for drugs, USA would be a 3rd world country. I GUARANTEE that for most of us type 1 diabetics we contracted the disease by some environmental factor…weather it be food or vaccination or whatever…we did NOT just get unlucky and “develop” it…period. The question is once we have it, how do we go about educating ourselves about it and going above and beyond the western health care system that seems to ONLY revolve around drugs…there is much much more to learn about it and there are some VERY smart people out there who know things that are being hidden from us… Ill admit once you educate yourself and get to know the ins and outs of type 1…its actually very easy to live with. Hell its like brushing your teeth to me. You get so used of it that it doesn’t really effect your life too much, but at that point is when you see above and beyond and wonder “why am I diabetic?” …and the research goes on and the findings are shocking. Educate yourself people…we can create a movement, a world of ideas and facts… either than just accepting the doctors (or, drug prescriber’s as i call them)
CAC…no no no no no..believe me…no. Money problems? move to Canada they got you covered. Eat well, exercise take charge and educate yourself you will go on without issue and live your life with ease….its not that bad of a condition if you learn to deal with it…
BigD: I guarantee you that ALL type-1 diabetics ‘contracted’ the disease by an environmental trigger. If it was only genetic then all identical twins with type-1 diabetes. But its certainly NOT because of these ‘harsh chemicals’ you talk about. If its the chemicals then ancient Egypt and ancient Rome had no type-1 diabetics? They didn’t have these ‘chemicals’ and what not. But there were still people that developed diabetes
I would say to cite some statistics, but there are many many people that hide this disease from people in the past so we cannot get reliable numbers on how many people have had it in the past versus today. Ie. i’m wondering if there has been a substantial increase of type-1 diabetics.
I do like how you want people to go out there and do your research. You are right, that you need to read up on. But remember don’t get taken in by these ‘cures’ that you read about. If its too good to be true, then it probably is. I’m a little confused about your statement, “there are some VERY smart people out there who know things that are being hidden from us”, please explain.
Oh i know about the snake oil “kevin trudeau’s” of the world…but the man’s message is pretty well all there. I know type 1 diabetes existed in ancient times, and those people died from lack of insulin. But what I am saying is why would scientists (that are working for the drug companies/governments) work towards a cure for diabetes??(or any disease for that matter)…. wouldn’t it make more sense for them to research what chemicals/foods/preservatives or environmental factors in general are responsible for triggering type 1 diabetes in people with a genetic flaw??, and then adding those certain key ingredients into food or vaccinations so that more people become sick with a perfectly ‘manageable disease’ like diabetes so that they buy more drugs and they make more money? We all know how expensive drugs are ($10k/year to manage type 1…if someone NEEDS something to survive, the price goes up because its definite money in the bank for the drug companies) It sounds terrible, obscene and horrible but why not? a lot worse things have been done to make money. Its not killing someone…its money.. And this world we live in is driven by it. I GUARANTEE if I was born in Indonesia or some other area of the world, i would not have type 1 diabetes today. So why do I have it? the answer is clear….
BTW i changed my name from BigD to nick3501 in case you were confused
Hi nick3501,
What a load of BS. You think you are a diabetic because of what those “meanies” in the US made you eat? Before you GUARANTEE that if you were born in Indonesia or some other area of the world, you would not have Type 1 diabetes today you might want to take a look at some population estimates for the numbers who have Type 1 in different countries around the world.
http://wrongdiagnosis.com/d/diab1/stats-country.htm
By the way, Indonesia and the US have an estimated Type 1 population that is pretty even when compared to their respective populations. In my opinion, you should quit passing blame on the conspirators and just learn to manage your disease. If you don’t want to take my advice, at least keep your cynical opinions to yourself.
Thank you.
All posters with short tempers are kindly requested to review this site’s comments policy, and especially the part about civility.
Thank you.
–The Management
How is that not civil? I believe what he is putting forth is a load of balogna. Isn’t that what these sites are for? To express ourselves and debate what we believe to be untrue? My point is to encourage positive expressions and if you have anything to say about diabetes and treatments/possible cures, make sure you back it up with facts. I was upset by the fact that some people may be reading this looking for hope in a desperate situation they find themselves in. Reading half of these “negative” posts I find it next to impossible to find “hope”.
I didn’t name any names. But if the shoe fits…
“What a load of BS.”
“If you don’t want to take my advice, at least keep your cynical opinions to yourself.”
I don’t consider either of those remarks to be sufficiently civil. I tolerate a lot of guff directed at me, but much less when directed at other posters. And that includes attempts to dictate what they may and may not say.
so in the news there is now a huge issue about how our water contains different types of medications. Trace amounts. However over a period of a decade it could be harmful to the body possibly pancreatic cancer ECT… I know this has nothing to do a diabetes really but just goes to show you how vulnerable we are. By the way this organic diet is working well. My sugars are in the norm range and I have notice an klincrease in energy.
so in the news there is now a huge issue about how our water contains different types of medications. Trace amounts. However over a period of a decade it could be harmful to the body possibly pancreatic cancer ECT… I know this has nothing to do a diabetes really but just goes to show you how vulnerable we are. By the way this organic diet is working well. My sugars are in the norm range and I have notice an klincrease in energy.
why in the world would drugs cost so much if the pharmaceutical companies weren’t in it for the money? Drug companies are a business first and foremost. If something threatens revenue to any big company, usually they have the pull in society to put a stop to that. Problem is, drug companies are some of the largest companies known to us. Same goes for food companies. Put those together and you have the government controlled FDA. lets just say tomorrow some researcher at this Toronto university said “OH MY GOD, I JUST CURED DIABETES” and it was as simple as that..100% cured…just take a small injection of some protein and voila! you are cured! Just stop by your doctors office and get your cure! Well thats just great for us. VERY BAD for the economy. What happens to the HUGE amounts of money and millions of jobs that exist because of diabetes? Drug manufacturers , paper pushers, specialized doctors ,all the companies that make glucose meters ,test strips , insulin ,needles,lancets, workers for the diabetes associations and all the “donations” they get. …and thats just curing type 1 diabetes!…IMAGINE what curing type 2 would do to this country! My god we would be in the worst economic slump ever recorded.The impact would be felt globally! Were talking a HUGE chunk out of our economy here… A cure cant happen without big economic flat lines, and this goes for every disease…MS, chron’s disease, parkinsons, and the list goes on and on. It takes a movement…a stand if you will. I personally feel that within the past 5 years the general population is getting the message…give it another 10 years and we will have a movement on our hands if things keep going the way they are. No longer will “breakthrough research” every 5-10 years convince us…
MP…its great to hear your getting better…please give more info on your diabetes (type 1/2 insulins etc…) sounds promising…
yeppers…two words here: MSG’s and Vaccinations…get rid of those two things and we wouldn’t need to be ranting on this forum.
well bigd you can never cure all type 2,lets give some hope fore the type 1s.
there will always be type 2,s because all of america is fat and cant get off the couch to get rid of the
problem and the big pharma no that.
The government and pharmaceutical companies are working in each others pockets. A cure would take financial burden off the government, however it appears more profitable to let the fortune 500 drug companies do their thing and continue as we are.
There’s some excellent comments/reading on this page that’s for sure.
@CAC i hope things improve for you.
Interesting stuff….we have yet ANOTHER “breakthrough” from harvard this month. Seems they are using TB vaccines to possibly reverse type 1. Hmm, if its already a common vaccine, why dont one of us type 1’s go get it…see what happens?
print friendly link:
http://harvardscience.harvard.edu/print/20192
seems the kiwi’s are up to something as well. Word has it they are injecting islet cells from pigs WITHOUT immune system suppressing drugs. ANOTHER “breakthrough”
why am I not exited?
oh right,
this has happened many, many times before…I still have hope but its fading. ill be happy when im cured, until then, most diabetics don’t care for the propaganda.
agreed type 2 diabetes needs NO research, period. Any fat lazy person can eat a green diet and get plenty of exercise and almost certainly 100% cure themselves, Type 1’s on the other hand don’t have that option. I cant see what else type 2’s could ask for…seems its easier to pop pills and take insulin than do something horrible like exercise or eat right. ALL research for diabetes should be going into type 1 and maybe the “rare” cases of type 2 that aren’t exactly caused by poor lifestyle….
BidD,
I regard this breakthrough as not a breakthrough, but relief that at least someone is looking at curing the root cause of type-1 diabetes. Where it seems that the JDRF is happy with finding better ‘treatments’. They are throwing most of their money at regeneration and replacement therapies (what good is that when the new cells will just be destroyed eventually?). So, instead of injecting yourself 3 times a day, you get to go to surgery once every 3 or 4 years. They really need to focus first on fixing the autoimmune problem AND then work on regeneration and replacement of the beta cells. I may have said this before, but if you get rid of the underlying cause, who knows, people may regeneration their own cells without any help. No one has been cured of type-1 diabetes, so we really don’t know what will happen to the body if the autoimmune disease is eliminated.
I understand the long list of broken promises and how scientists are always ‘so close’ to a ‘cure’. But the discovery of insulin was truly a remarkable achievement – especially in the time line that it was discovered and brought to market. This rapid discovery put the real cure for type-1 diabetes on the ‘backburner’ because after insulin was discovered it was actually widely regarded as a cure for diabetes whereas it really was only a treatment. Remember the life expectancy of a type-1 diabetic after diagnosis was only a few years, insulin gave people the opportunity to actually live a life. If you think about it how far have we truly come, not much has really changed. Yes, its much easier now, but the same basic treatment exists … injecting yourself with insulin.
Saying type-2 diabetes does not deserve any research money is a little extreme. You realize that there are type-2 diabetics aren’t obese lazy slobs. As your body ages, some people develop a resistance to insulin. True you will not find a young, fit type-2 diabetes (under 50-ish), but there are active older people who are fit and in shape that have type-2 diabetes. Are these the people are you calling ‘rare cases’? Well, if you cure them, you’ll end up curing many of the type-2s … even some of the fat lazy slobs.
Posted by: richard weyrick at April 13, 2007 08:35 AM .This was my last post wow there has been a lot of comments on this site since that time. I am sorry to say that my tdd has not been any less since that point in time but per the limited information that can be found it takes from 18 to 30 months of constant use of Diamaxol to at some point live without insulin. Also I have ran across these sites that I thought some of you might find interesting. http://www.healingmatters.com
What this person claims is he knows the cause for Diabetes. This is audio not video the same man who has done the healingmatters site. http://video.google.com/videoplay?docid=-827485955485972672
In addition this is a product that I have used to CURE a number of the complications that I have developed over the years. I had a problem with my shoulder for the last 30 years it was not related to the Diabetes but it was cured after 6months of use. A back concern “I would slip a disc every couple of months for the last 5 years” the last time it happened the device took it away overnight instead of the three weeks+chiropratic adjustment that was required. I also have a friend who went blind 12 years ago and developed emphizima by utilizing this device he now can see out of one eye to about three feet he could only tell the difference between day and night before and he claims that he has reduced his treatments for emphizima by about 50%. http://www.em-probe.com I hope some of
you will at least check these out. By the way I am listed as a reseller on em-probe but I have not sold one of these units in over a year and I have none in stock so please do not contact me for one of these units I am not trying to make any money from listing this information! Rich
Damon,my younger of two sons was diagnosed with type one diabetes at ten years of age.Like his older brother,he was a very active young boy,racing BMX bicycles,snowmobiles and motocross motorcycles.Besides all that he was very much interested in skateboarding,bicycling,playing guitar and drums.All of the other things young boys do too.There was never a dull moment around our house.When he appeared to be getting sick we thought he was coming down with the flu and took him to the doctors when his condition worsened.We were shocked to find out the terrible news.We were completely ignorant of the disease and he nearly lost his life because of it.We were sent to Strong Memorial hospital in Rochester,New York and felt we were treated like the only people there.We can’t say enough to thank them for all of their help.Damon had just turned ten but I really think he was made aware of the seriousness of this disease.One week after getting out of the hospital he was racing his snowmobile again.He hasn’t let this disease slow him down at all.He is seventeen now and I have never heard him complain once about it.I’m not going to say that he has never been depressed about it privately,but we’ve not seen it.He’s a remarkable person with a very positive personality and just goes on with life as usual.He makes it seem like a minor inconvenience though he knows it’s very serious.Starting with shots,he has been using a pump for awhile and will soon be getting the new continual monitoring system.We are all hoping for a breakthrough cure but are grateful for the continuing improvements in management.We were told that “there may be a cure in ten years but that was being said ten years ago too”.Everyone involved with the diabetes treatment that we have dealt with along the way has been sincerely helpful and we appreciate all that’s been done for us.I realize some people just go through the motions in their lives or work but I’m not as cynical as some here and believe there are mostly goodhearted people in this world who are honestly searching for cures to this and the many other diseases.This is the U.S.A.,the greatest country the world’s ever seen and we got this way by being inventive,determined,compassionate and so much more.When a cure is found for type one diabetes it will be here.If you think that sounds corny,that’s your problem.Cynicism is a disease in itself,part of the liberalism running rampant in this country.George Bush or the government is not responsible for my son getting this disease nor are they responsible for curing it.Don’t worry,”Big pharma” will survive if there is a cure found for type one diabetes.Positive results don’t come from a negative outlook on life.A very young girl in the room next to us at Strong had terminal cancer and was not dealing with it very well.It was so sad hearing her crying and thinking of what she and her family must be going through.Though life threatening,type one diabetes can at least be treated and I think Damon realized that hearing that poor little girl.If you’re thinking that it’s easy for me to say all of this not having diabetes myself,you’re right,but I would give my life right now for Damon to be cured.
I known pharmacy company in usa , they just make you depend on them for life, I move to usa from vietnam, i though i can have a better life, i was wrong…type 1 diabetes sure have a cure already, why they still play on the tiny animal ? all about the money…sad.
EVERYTHING we know is based around money. GM perfected the electric car about 10 years ago, oil companies put the boot to that…theres still a few hundered TRILLION dollars worth of oil business to do, and they plan on doing it. Same with big pharma companies. There is too much infrastructure around things like diabetes. Too many foundations and associations, too many jobs, donations, companies based upon type 1 alone.
In case you didn’t know, there appears to be a cure in Australia called DIABECELL. LCT (living cell technologies) is in their human trials of encapsulated islet cells. a guy has had it for 10 years with NO adverse effects. They used pig islets from a clean, isolated pig farm. This truly is one of the most promising things for us type 1s today. lets make some noise, spread the word and not let this one slip under the grips of corporate money hungry pigs. why don’t we hear about this in north America? hmm i wonder…money? screw the FDA, screw the JDRF, screw the ADA they are all businesses thriving off of our disease. If they approve this in Australia and new zealand, and say they need another 5 or 10 years for AMERICAN fda approval. Im moving and leaving this country behind.
(www)DOT.lctglobal DOT COM SLASH diabecell.php
Id like to voulenteer for trials…
oh, and did i mention there are NO immunosupressant drugs required with diabecell….
BigD, I can appreciate your enthusiasm for LCT, but this idea will NEVER work. I posted this on the CWD site a while ago. It has NOT been edited here.
Ellen and Teresa, the idea of a ยencapsulatedย islet has to be one of the poorest ideas for the control of Type I diabetes that I have seen over my 16 years with the disease. Here is why:
1. Fibrosis. Any foreign body placed in the peritoneal cavity as is suggested for these encapsulated islets, will be met with fibrosis covering the device/devices. This will lead to,
2. Cell death. The life expectancy of a islet cell outside itยs native environment is limited. The pancreas is a highly vascularized organ, as such islets do not respond well or survive well when placed in other environments, especially the closed, or semi closed environment of a ยcapsuleย.
3. Retrievably. Letยs say you have implanted a few thousand of these encapsulated islets in the peritoneal cavity, they are met with eventual cell death and fibrosis surrounding the capsule. How do you intent to retrieve them? Fishing in the peritoneal cavity is not something I or anyone else would recommend.
4. Lead and lag times. Okay so I have implanted a few thousand encapsulated islet cells into my peritoneal cavity. If you recall from number 2 above, islets in their native environment are highly vascularized. Enclosing these islets will lead to lag and lead times of the islets ability to sense and respond to glucose. So the curve of glucose that the host is experiencing and the response to it will not be in alignment. Not good. Especially for children who may or may not rely on others when experiencing hypoglycemic episodes.
5. History. The ยencapsulatedย islet(both micro, macro and even sheet) has been attempted ad nauseum over the last 15 years. The list of companies that have come and gone attempting this are many, the dollars spent attempting this I am sure run into the hundreds of millions. Off the top of my head I can remember: Encelle, Vivorx, MicroIslet, AmCyte, Islet Technology, Cero Medical. And that is just off the top of my glucose challenged brain!
This idea will NEVER work. Period.
while my research is limited, from what I understand as of so far, LCT’s progress has been VERY promising. If it doesnt CURE diabetes type 1, then (and this is what I expect) it may be used to improve BG control and overall quality of life in people with type 1 diabetes. like we’ve argued here. There probably IS a cure, and there probably has been for decades. Back in the 70’s all the top doctors would say “5 years TOPS!” and they were right, in theory. But the money made on prescription meds FAR OUTWEIGHS the need to cure type 1 diabetes, or any “manageable” disease at that. I honestly feel that in the past 10 years this generation is finally starting to get it. People now view governments/insurance/oil and pharmaceutical companies as the disgusting scum of the earth that they are…and when people get it, changes happen. I feel in my heart of hearts that there is a revolution imminent in our society. And that will cause the right things to be done for man kind and not the things that make money. EVERYTHING about diabetes is propaganda, its garbage! F’n TV commercials with happy people advertising the new diabetes drug or high tech gluco-meter, “walks” and “runs” to raise money for diabetes….FOR WHAT? to pay off the thousands of workers for these companies??, to feed the piggy bank. JDRF, ADA etc etc are no different than oil companies. They like to make money, regardless. You sound like a smart man, dont you feel sometimes that you are being played like a piano? lead on this life of false hope? its hard to keep hope. I can live with my diabetes, but i CAN NOT live with the constant “BIG BREAKTHROUGHS” that all just get swept under the carpet until the next breakthrough. I make peace with the hand of cards i was dealt in life, i move on, and then this crap every 5 years brings me down “BREAKTHROUGH” and regardless how much of a wall you put up to the lies it still sparks a glimmer of hope and you quickly clue in to reality and get depressed as hell for a month…pick your head up and start to move on again. i wish they would just come out and say “yeah were pretty much FU@#$NG you over, get used to it”
I have an 11 year old daughter that now has type 1, she has had it now for 5 months,whilst i can understand why people are being cynical about a cure, i need to remain positive for my child,all we have these days is hope and i refuse to tell her that she is stuck with this forever, what do you tell a child while giving them a needle so many times a day and you can see the tears in their eyes and ask you , why me mummy, this hurts so much, i reply like any decent parent would, i tell her that hopefully one day soon there will be a cure and to just hang in there and we will take this one day at a time, we have to take on the same mantra as alcoholics and drug addicts, one day at a time.
i am hanging in there and praying for a cure especially for my little girl but also for everyone that suffers with this and for the people that have to see them go through this on a daily basis
call me stupid ,call me whatever makes you feel good , but at the end of the day its the one thing we all want despite what is being said.
hi everyone, this is the first time i have come across a site where all type 1’s are so expressive. I have been diagnosed for 10months now and i must say its been the most miserable feeling in the world. I dnt understand my disbetes , i am currently on novomix 30 short acting insulin however my doctor has advised me that i change to humolog and lantis but i am afraid to do that. is there anybody who can advise me if novomix30 has been working for them or should i change to lantis and humo for my own benefit.
I must say that my family has been very supportive through this ordeal however, i can honestly say that they do not understand the mood swings and complications that i experience daily. together with this i have a supportive boyfriend however i feel guilty that sumbody so healthy has to endure my pain and suffering for the rest of his life and even face having to bring up diabetic kids. I love children and its always been my dream to have kids but i do not want them to suffer or inject my baby.
If anything diabetes is just as bad as any other life threatening disease becoz it controls my life. I sumtimes sit and cry but no amount of tears will take this disease away. I am very down at the moment and I wish God would just take this disease away. Im afraid of not making it through this.
hi everyone, this is the first time i have come across a site where all type 1’s are so expressive. I have been diagnosed for 10months now and i must say its been the most miserable feeling in the world. I dnt understand my disbetes , i am currently on novomix 30 short acting insulin however my doctor has advised me that i change to humolog and lantis but i am afraid to do that. is there anybody who can advise me if novomix30 has been working for them or should i change to lantis and humo for my own benefit.
I must say that my family has been very supportive through this ordeal however, i can honestly say that they do not understand the mood swings and complications that i experience daily. together with this i have a supportive boyfriend however i feel guilty that sumbody so healthy has to endure my pain and suffering for the rest of his life and even face having to bring up diabetic kids. I love children and its always been my dream to have kids but i do not want them to suffer or inject my baby.
If anything diabetes is just as bad as any other life threatening disease becoz it controls my life. I sumtimes sit and cry but no amount of tears will take this disease away. I am very down at the moment and I wish God would just take this disease away. Im afraid of not making it through this.
I’ve had type 1 diabetes for 20 years. If you let it control your life, it will. If you don’t, it will just become a minor hassle. Sure, I have to take a lot of shots, but each one takes 10 seconds and rarely causes any pain. I eat healthier and excercise more regularly, which I should have been doing anyway (we all should). Other than that, and the occassional checkup at the doctor’s, there is no difference. It makes me upset to see people who let this disease ruin their lives. You don’t need donuts and coke every day to be happy.
Diabetes research is progressing at a solid pace. yes it is driven by money, but there is money to be made in a “cure”. If you want to talk about government malfeasance, look at the disgusting perversion of our food system by the Farm Bill–creating a diet resulting in huge amounts of type 2 diabetes as well as a culture that subsists on nasty corn-product foods.
There are a lot of us Type 1’s out there!!!! I have had it for 48 years and know how all of you feel. You get to a point why care???
adam im not making it run my life just taking some time to adjust to this
just realised yesterday was one of my highs. Have the flu and my blood suger is rocketing through the ceiling.
i like this site, its nice chatting to people who know EXACTLY what im feeling.
Type I diabetes does control my life. I am a human pancreas, period. Type I diabetes is my first thought of the day, it is on my mind every second of every day, and it is the last thought before I fall asleep. I was diagnosed late in life at 24, so I have many many fond memories of life before Type I diabetes.
Michele and StillType1. I’ve had this beast/curse for 14 months and you are so right it does control your life. I was diagnosed at 60 and this has totally destroyed me. It is not a minor hassle! I can no longer get up when I want, go to bed when I want, eat what I want, when I want , if I want. Every little thing is ruled by the insulin clock. And I was eating right and exercising and doing what “they ” said and I still ended up in this living hell. Besides I never had donuts and coke every day anyway because I couldn’t afford it. My doctor wants to put me on anti-depressants to make me feel “good” or “better”. There is nothing about this to feel good or better about. I declined. Why buy even more trouble by going this route. At least the people here have a shred of understanding and caring that we can get no where else. I don’t know any type 1s (or 1.5s like me) and only a couple of type2s who blithely go about their life with no regard to their health. CAC
THX ADAM
I have been type 1 for 28 years now. I have no complications despite having high a1c test results. I’ve recently gone on the pump, only to have my a1c’s go back up after a short time. But I exercise every day and generally feel very good.
Whenever I get into the mode of feeling sorry for myself I go out on the street (I work in NYC) and take notice of the large amount of people who fight every day to keep working and living despite some visible disabilites. I am COMPLETELY humbled when I encounter a blind person going about their business in the tough as nails ny manner. How can I feel sorry for myself when I see those people? Everyone should try this- take stock in what you do have, whether it be your ability to walk, see, breath, etc and STOP feeling sorry for yourself. You are wasting valuable time of living.
living cell technologies has been moving forward with their encapsulated pig islet cell research called “diabecell” the sea-weed derived cell encapsulation allows for the islet cells to respond fairly quickly to changes in blood glucose while protecting the cell from the human immune system so no dangerous immune-suppressing drugs are required. the original test was done on a man in Australia back in 1996, and today the cells are still alive and functioning in his body. The pig cells are from “clean” pig farms isolated from any potential disease..below is a recent news report from lct. There was also a recent video on an australian news channel that can be seen on LCT’s website (google it)
Posted on: Friday, 6 June 2008, 09:01 CDT
Living Cell Technologies has announced that the positive preliminary data from its first clinical trial of Diabecell for insulin dependent type 1 diabetes has encouraged the company to expand the trial and proceed with testing higher doses.
In Living Cell Technologies’s (LCT) first Phase I/IIa trial of DiabeCell, its lead product of encapsulated porcine insulin producing cells, five patients have been implanted with the lowest dose.
As reported in the company’s clinical update on March 31, 2008, there have been no significant adverse effects and a clinical effect was demonstrated with reduction in daily insulin requirement for up to six months follow up with satisfactory control of blood glucose.
Bob Elliott, medical director of LCT, said: “The clinical effects observed with the lowest dose and the uncomplicated safety profile to date have encouraged our clinical experts in Moscow to implant higher doses with the expectation of greater clinical benefit.”
Its terrible that inspite of the developed world reaching the month and now mars, cure for diabetes i and ii still elude them. Shame on the so-called technological world, is somebody playing politics with the lifes of us DIabetics? I rest my case to Allah the Suprime Creator who never fails.
Hello all fellow Diabetics,
I accidentally found this post while surfing the web looking for an answer to loosing weight for Type 1 Diabetics. I was diagnosed with Diabetes when I was 9, I remember I was ill with the “flu” for one week prior to being diagnosed. The week before I was ill was Easter (I ate half my Easter Basket that week)
Consequently my mother died from Diabetes complications when she was 28 years old ( I was 6) and I had to watch my grandmother go through a painful leg amputation 6 months before Diabetes took her life.
I am now 31 and you would think that I would take better care of myself after I watched both my mother and my grandmother die from this horrible disease. But to be truthful – I can’t remember the last time I tested my blood sugar and it’s been about 10 years since I have seen an endocrinologist partially due to insurance reasons, partially due to my “former” belief in self-healing.
I have always heard horror stories of diabetics being in and out of the hospital (my mom was one of them) and despite an A1C of 12 the last time I seen a doctor, I still have not been hospitalized for diabetes since I was diagnosed. I am sure that will change if I don’t change my evil ways.
I have been desperately trying to lose 20 pounds and no matter what I do – It will not come off – when I googled “how to loose weight with Type 1 Diabetes” I read 20 articles on how it’s a good thing I have gained weight because thin Diabetics have a history of dieing – F’ing great – so now I can die happy knowing I died from being a fat ass as opposed to being a Diabetic.
I am glad I found this forum – I have never met or talked to anyone else with Diabetes (except a nurse once) – mostly because there’s not to many people who know that I am Diabetic – not even my employer. I have always felt ashamed of my Diabetes – like I’m this person who is forever plagued and I know I will never have a shot at ever being perfect because I’m already screwed! It’s nice when the people who don’t know I’m diabetic see me for who I am and I never have to worry about them feeling sorry for me.
I think not feeling sorry for myself may just be the one thing that has gotten me through all this BS – all though occasionally I bask in my self misery – this easily curable with a good glass of red wine and a 20 minute pity-party (Yes- I have the occasional glass of wine)
But I do stand with you on the fact that nothing will change if we don’t speak out. So whose writing the first letter to congress regarding our insurance issues. As far as I am concerned there would be a cure if we were not held up by the greedy bastards running our gov’t. The last I knew it cost $7.00 to make a bottle of insulin – why then does it cost me $80.00?
agreed, nobody should have to shell a dime for this piss poor disease…yet we are knee deep in medical bills. You should definatly take care of yourself, for your own sake….a little insulin and food prep is all it takes. Funny I, like you and many others had this mysterious “flu” before being diagnosed…..WTF is this? a human brain has to ponder the thaught of a very realistic connection between the two? what is it and what is making it cause diabetes?
My son also had a virus about 2 weeks before being diagnosed (age 16) at the end of May. He was showing symptoms during those two weeks and the doctors think it is most likely related. The thing is, my daughter also had the virus (I assume the same one – same symptoms), just a couple of weeks prior. I even took her to the doctor thinking she had strep or mono. Those tests were negative and she quickly got better. She thankfully did not get diabetes. We have since had her screened and are awaiting results. I’m wondering now if I can go back to those cultures and see if there is anything that would give someone a clue. They are probably long gone, but worth a try…
first time viewing tis site..i’ve had type 1 for 13 years,, im 25 now..reading all de comments makes me feel happy and saad..happy bcoz i know there’s someone who could understand me…and sad thinking why we r fated like tis…nice to meet u all.. thanks..
This could be great, I have been Type 1 for over 5 years now. Too bad it is all about politics and money that keep things like this from getting brought to the public. Thanks for the post.
Anybody who reads this should keep up with Living Cell Tecnologies….trials to start in the U.S! Already begun in Australia and Russia. Encapsulated pig islet cells with a sea-weed based capsule that allows quick response to blood glucose changes and long cell life (10+ years)
Great news about LCT!
Here’s a little bit of hope for everyone. I do not know all of the details, but I know (secondhand) of someone who had an islet transplant a couple of years ago. She did not need insulin for over a year, after 45 years of being dependent on it, although she did have to take anti-rejection drugs. Recently she has had to start to take insulin again which sounds about right, since the islets weren’t protected.
Here’s the good part. In a couple of months, she will be doing another trial where they will transplant “encapsulated” islets hoping, obviously, that these will last and not be attacked. This is taking place in the US.
I did some searching through clinicaltrials.gov and found a few trials using encapsulated or coated islets, though not this particular one. So it looks like more people are thinking this way. Let’s hope they’re on to something!
well the sea-weed derived gelly capsule LCT is using seems to provide exellent protection from the immune system, while allowing the cell to respond in a timely fashion and have a fairly long life span (hell id be happy if i had to get a new cell implant every few years)
The way LCT injects the islets, it seems very non-invasive. This would make multiple transplants if that’s what it had to be (every year or two) no problem at all. Minor inconvenience for a huge quality of life/health change. Let’s all cross our fingers that something here works and will be available to the masses soon!
so non invasive, in fact you can be out walking the next day…If only the next presidential candidate was diagnosed with type 1 diabetes…watch how fast a “cure” comes about…
yes LCT sound good, my son is type 1 , 7 months now. hes doing real good, a1c 7.1 talked to our doc in edmonton , he knows about this and i guess edmonton is looking at it also. the have done transplants with human islet cells with some good results, lasted over a year,but they had to take anti rejectin drugs, the have their pig farm also with the U of A, pigs are gona be are best friend, let hope it works for every one some day.
My daughter was diagnosed with Type 1 3 weeks before her 18th birthday. She is now in a very strong honeymoon, and taking only an occasional Humalog shot before meals, and one Lantus shot a day. We are considering having her participate in the Barbara Davis TEDD trial, phase 2. They are having remarkable success with the drug TRX4, and some participants are off insulin or on reduced amounts. Does any one have any additional knowledge about this drug study…drug is made by Tolerx? My daughter on one hand just wants to cope and manage her new diagnosis, but on the other does not want to let go of a way to keep her beta cells producing insulin on their own. Thanks, JUdy
Hi Judy, I’m sorry to hear about your daughter, but she seems to be doing well managing. It is important for her to just cope but you are right to look ahead.
My son was diagnosed in April and I had the same thoughts -however you need to act quickly as they usually want you to start by week 6 after dx (diagnosis). I looked in to all of the intervention studies and talked to research docs all over the country. It was a bit stressful as there are several different options and you only get one shot at this.
The main thing that has to happen is that your daughter be on board with the trial. She has to realize she is doing this for science – not just herself. It is a big commitment, usually several years and she may not even get the drug. Some of the studies are double blind with placebo. Others you just don’t get the drug, but they need you as a control group participant.
My son was bit limited by his age (16) and he didn’t like the idea of camping out at a place for 2 weeks to get infusions right before school was out this year. We chose the Trialnet CTLA4 study at Benaroya in Seattle. The people there are amazing and I find that I look forward to our monthly visits. My son is interested in science and understands he is helping them out by making this commitment.
I’ve heard to stay away from drug companies’ trial studies and I’m not sure if Tolerx falls into that category. But there are many others that are similar if it is an anti- CD3 drug. Don’t believe everything that you read! I’ve been through all of that and it’s a roller coaster!
Please feel free to contact me offline (jtullis4@comcast.net). I’d love to talk to you further).
Jan
Hi Judy, I’m sorry to hear about your daughter, but she seems to be doing well managing. It is important for her to just cope but you are right to look ahead.
My son was diagnosed in April and I had the same thoughts -however you need to act quickly as they usually want you to start by week 6 after dx (diagnosis). I looked in to all of the intervention studies and talked to research docs all over the country. It was a bit stressful as there are several different options and you only get one shot at this.
The main thing that has to happen is that your daughter be on board with the trial. She has to realize she is doing this for science – not just herself. It is a big commitment, usually several years and she may not even get the drug. Some of the studies are double blind with placebo. Others you just don’t get the drug, but they need you as a control group participant. Having her meet with the doctor(s) is the best way to know if she wants to do this.
My son was bit limited by his age (16) and he didn’t like the idea of camping out at a place for 2 weeks to get infusions right before school was out this year. We chose the Trialnet CTLA4 study at Benaroya in Seattle. The people there are amazing and I find that I look forward to our monthly visits. My son is interested in science and understands he is helping them out by making this commitment.
I’ve heard to stay away from drug companies’ trial studies and I’m not sure if Tolerx falls into that category. But there are many others that are similar if it is an anti- CD3 drug. Don’t believe everything that you read! I’ve been through all of that and it’s a roller coaster!
Please feel free to contact me offline (jtullis4@comcast.net). I’d love to talk to you further and I have some info and contacts from many of the studies.
Jan
Hi Jan, Thanks for your comments. I’m sorry to hear about your son,too. What a hard time the initial diagnosis is! My daughter also was really sick with a bad virus before the symptoms appeared. Evidently, we caught it early. I would love the info and contacts from your personal research. From what I know, Tolerx, an anti-CD3 drug, has been having the best results out there. In every case but one, the candidate came down in insulin use, some came off insulin altogether, and it seems the hope is to keep you from progressing further in beta cell destruction. My daughter has alot of her own beta cells still producing insulin, and our hope is to keep it that way. Reading between the lines, and the conversations we have had with the research doctor and staff, I can tell it is hard for them to hold back the enthusiasm they have for this trial. Our research doctor has 2 type 1 children himself, and one of the research co-ordinators and also a social worker, has had Type 1 since she was diagnosed 15 years ago at age 36!! If she had any beta cells left making insulin, she would be doing this study in a minute. We picked this one because it is not the placebo study, and she would be in phase 2, but they will be dosing her and treating her as they would with phase 3 trial. ( Phase 3 has the placebo group.) Tolerx however has just signed a multi-million dollar agreement with pharmaceutical company, and I believe they will get this into a pill form to give to new onset patients to keep them from progressing. My daughter has her ups and downs about putting a drug into her body that is still in a test phase. Her “honeymoon” period is so strong, it is almost like she doesn’t have diabetes. How is your son’s honeymoon? When she was first diagnosed, they said she wouldn’t experience lows, and I can’t tell you how many times we had to deal with a low…one time of 35. Of course, the docs still hadn’t figured out how much insulin she needed, and now she is on one 6 mg shot of Lantus, and an occasional Humalog. I remember all to well, the multiple shots before eating, and the extreme fluctuations in the beginning. It was heart renching in the beginning…of course, no history of Type 1 in the family… how about your family? I know the management tools have become better, but we all know the seriousness of this illness. I do believe there will be a cure, and I know if my daughter doesn’t try one of these trials now while she can, she may have missed a great opportunity that might only be availabe to new onset. I wanted to email you, but my daughter reads everything, and I didn’t want her to see anything potentially negative. Please tell me as much as you can comfortablly on this site. How is your son doing now? He must have some depressing moments. To have lived “normally” and get diagnosed at that young adult age, has got to be hard. Though, my heart goes out to parents of young children, because that can’t be easy controlling the ups and downs, and kids get sick so often…another tough thing when you add diabetes to the mix. Hope to hear from you, Judy
Hurry and do it! Wow – she is in such a great position. The study is JDRF funded, it’s been through the safety phase of the trial, and she’ll actually get the drug.
Jonathan’s honeymoon is not nearly as good, but his insulin doses went down a lot at first and we thought maybe they were wrong about the diagnosis. ๐ He’s at 18 Lantus and 1 unit Novolog/15 gr carbs ratio – and holding steady.
Like you,I was very cautious about bringing up anything about diabetes at first with my son (except the ongoing care). Of course I was learning everything myself also. Jonathan just didn’t want to talk about it – things like getting the pump or anything in the future. He refused to talk to another diabetic boy at school – saying he’s fine. Got disgusted when people sent him books (look – this football player has diabetes!). This is the age where they are just trying to blend in with everyone else and not stand out in the crowd. But he’s getting much better now and open to talking about the future – both dealing with the disease as is, and hope for a cure.
I’ve written to a friend of my mom’s who works at the Diabetes Research Institute Foundation in Florida to ask her opinion about Tolerx. She was very helpful to me and put me in touch with Dr. Skyler in Miami. He touted the Abatacept trial for Jonathan (but I think he’s involved with it – always a catch). Anyway we liked Abatacept since it’s already FDA approved for RA and all of the anti-CD 3 drugs were a 2 week infusion. If it had been summer, we probably would have gone that route. However, we still would not have been assured of getting the drug. Then he would have been locked into that study and knowing he’s not getting it! You are in a perfect place! Well, as perfect as can be I believe.
Kathleen Frasier (kfraser@diabetes.ucsf.edu) at UCSF was extremly helpful to us and of course Dr. Carla Greenbaum (cjgreen@benaroyaresearch.org) in Seattle is who we are seeing now. I’m sure either one will be more than happy to give their opinions. Of course, everyone will want your daughter for themselves!!
Good luck and keep me posted!
It was recommended to me, through my contact, that you look into a study with mesenchymal stem cells. This is being done in Florida if that would work geographically. I can put you in touch with this doctor, but would need to give you the info offline. Jan
Looks like this one may be Phase III also, I believe it is the one mentioned above.
http://www.jdrf.org/index.cfm?fuseaction=home.viewpage&page_id=CB9AB282-110A-9BB5-F86034EEC8533471
Jan, Thanks so much for the helpful input… I KNOW how hard this diagnosis is on the family, especially moms! I understand your son’s irritation from people thinking they are saying the right thing. My sister thought learning how to deal with her diabetes would give her “empowerment” tools about taking care of herself. NOT the right thing to say when all you want is compassion and sensitivity to your feelings. What I found is everyone confuses Type 1 with Type 2 and yes, everyone, thinks why all the glum looks?, this disease IS manageable, isn’t it? And, of course, yes it is manageable, but it’s not as easy as the doctors,nurses, books, etc. say. My daughter’s lows were actually pretty scary, ( one time she had a 35) and when she picked up a virus that causes alot of throwing up ( and she hadn’t been sick in years prior to all this), that was a nightmare. She had large ketones in her urine, we couldn’t keep food or liquids down, and she was real close to me taking her in to the hospital. We found out how hard illness can be when you add diabetes. Scary when the nurse on the phone preps you for use of the glucagon. We live in Colorado, and the big news was the diagnosis of Jay Cutler…We had to hear, see he has Type 1 and he is a quarterback, and he’s still playing!!!! This is a scary diagnosis for a teen who was normal and had the world in his hands! They read the info and know management tools are now better than ever, but complications can still exist, and people do die from diabetes-related problems. Taking a shot before a meal with friends is not something easy to get used to. Anyway, we have decided to go ahead with the drug made by Tolerx, and my daughter will start treatment on Aug. 23rd. It is an 8 day stay at the hospital, and she dreads all the blood testing, heart testing, etc., but hopes beyond hope to stay as long as possible in this fabulous honeymoon. Off-line, do you think your son may want to communicate with her…they were both diagnosed about the same time, and must have some of the same feelings. Just a thought…will keep you posted, Judy
Judy, I am sooo excited for you and your daughter!! Please keep me posted. One thing Jonathan said after being in the hospital (just one day) was that he enjoyed relaxing and letting everyone else take care of him. He didn’t have to check his BG or give himself a shot all day. Of course there’s the flip side of being in bed all day! Hopefully they let you “out” during parts of the day to enjoy the area. Jon hasn’t been really sick yet, although he did take the wrong insulin a couple of times. Luckily he caught the mistake before going to bed. He had to gorge himself on juice and food as his BG was plummeting after taking 18 units of Novalog! I try to block out what would have happened had he gone to bed. Another time he had a 38 BG (I didn’t think shooting baskets was “exercise!”) but is pretty good about feeling his lows. Does your daughter have a pen? That helps so much with going out. We have lots of cousins south of Denver – I love that area. I’ll check about the communication once I figure how to bring it up and not make a big deal out of it. It would be great for both of them I’m sure. Take care and keep us posted – I can’t wait to hear!! -Jan
Brian, Type 1 23 years. Thank you all for all the great information and opinions. It is encouraging that so many type 1’s are still going strong, and sad that others a struck by diabetic struggles and complications.
My story. It took me 8 years to figure out what to do with diabetes, get over the trauma. How to live. I had to live alone to cope with the disease.
I gave up on doctors 15 years ago, took up organic whole foods, running and yoga, and appear to be as healthy or healthyer than anyone around me. After agonizing over marrying and having children, we married 13 years ago and have 2 healthy preteen sons, although the younger boy is sensitive to sugar and we need to be careful how he eats. Our sons also eat whole organic foods, and are outdoors and active much of the time. I do not regret having children.
Now I’m 49 years and still healthy. I make my living farming, work outdoors all day. Diabetes is a very personal secret for me, only my wife knows. And even though I take 40 units of insulin a day, I rarely have problems. I guess that I’ve just learned how to look after myself. I expect to go at least another 20 years like this. Life can be hard for everyone, and we all suffer in some way.
I agree with the fellow who wrote that the pharmaceutical companies must have found cures, but cannot profit from cures. So now my disease costs about $600 per year, and I never forget my disease. But take heart all you newly diagnosed youngsters and parents of diabetic youngsters. Diabetes is a great teacher, teaching us to always be aware of what we eat and how we feel.
Diabetes leaves me feeling that I should have been dead a long time ago, Now I am just happy to be alive.
Thank you for letting me share.
Brian, I’m so happy that you went on to live your life in a healthy way! And even happier that your kids are healthy. I was starting to get very depressed reading that people were thinking of not having children only because of this disease. You’re right about diabetes being a great teacher – it has certainly made our whole family aware of what we put in our body and what we surround ourselves with.
Some information to share. My son tested positive for Celiac when he was first diagnosed with diabetes. In the hospital they do those tests automatically now. Anyway, everyone told us how accurate those tests are now and we should just start him on the celiac diet – don’t even put him through the biopsy. My dad has it, so that’s a double whammy. His gastro, however, said that she had seen some false positives in diabetic patients and that gave us hope. After his biopsy on Monday, she was somewhat discouraged with the pictures, but told us to hold out for the pathology report. It came back today – negative!! We are ecstatic! Now he only has to deal with his diabetes. Isn’t it funny how life throws you these curves and then everything else looks better.
Go to the lctglobal website for an update on the clinical trials. July 22, 2008
LCT Reports Clinical Benefits.
I’m 15 years old, and have been living with diabetes for just over two years. My aunt and cousin have it too. We live in New Zealand, and in about three weeks time there is to be a huge debate over what looks to be, not a cure, but a treatment for putting diabetes ‘on hold’.
Scientist Bob Elliot has formulated a ‘temporary cure’ for diabetes, by transplanting pig cells wrapped in a seaweed gel into a person’s body. He tested it on humans a number of years ago (before all the ethics laws came into play), and there was some mahor breakthrough! Some patients spent a day off insulin, some a week, some a month, some even got to six months! He’s done some massive work on it, and now has made it even better.
Ethics and Health Board here have answered all the questions, agreed that the trails are Ok, and you know what’s holding it up?
POLITICAL PRESSURE.
Idiots running our country are spending months putting off a potentially life-changing trail, so they have a better chance in the elections. Why can’t they think of someone other than themselves, and grow a backbone! The longer they put it off, the further away it becomes for everyday diabetics like myself.
It’s really sad to hear about all the problems a lot of people face. I myself have had very few problems with my diabetes, born into a new-age technological world. Why, just the other month all all the people who have meters from one brand got their meters upgraded. I’m very lucky to have my mum, who lived with a sister who had diabetes for most of her childhood. Hence, she knew the symptoms of it, so I never got very sick.
I wish all those out there really good luck with their own lives. I think diabetes cannot be classified as a single strain or set of symptoms, every person is different – some people get lucky with theirs, others don’t. I’m very grateful that I’m one of the lucky ones.
BethandMolson
Jan, Just wondering…I haven’t heard from you…did you get my last e=mail? ( link to video clip for JDRS walk for the cure.) Great news about your son and NO celiac. Looks like Danielle will be starting her study trial on Aug. 4. now!! Judy
This is such great news I have been living with Diabetes for almost 13 years now and anything would help. Thanks for bringing this to my attention !
Johnny
My grandson is only four years old and has just been diagnosed with type 1. How do you explain to a four year old that he has this for life. A cure must be found as it not only destroys the child but his family as well. From reading all your reports it appears to me that only nice people get this. It is as if God or whatever higher being you believe in has chosen you. I just wish he would choose some of the bad SOAB.
Brian, I’m so sorry to hear about your grandson. Please don’t tell him that he has diabetes for life! You must give him hope as there certainly is much of it out there. He probably doesn’t understand either concept yet except that those shots sure hurt. That must be heartbreaking. Will he be able to get on a pump soon? Maybe even a CGM?
Hey all.
I got diagnosed when I was 12, i’m 19 now and still haven’t had any problems. One of the main things I have noticed is that we have to accept what we have been given, and learn to live with it. People that don’t do this form bad habits which leads to problems, or getting depressed which is what a lot of people seem to be who have posted in this forum.
Lets all try and embrace life, and strive for a happy and as normal life as possible.
Dave.
hi dave my son got type 1 nov 2007, he will be 12 this month, did your glucose numbers really go up and down during puberty, my son goes up and down right now, hes got good numbers some days, then he go,s high and we bring it down,then he,ll start having lows so we cut back again.
and just to let you know he is fine with it,and he,s a real smart kid,so i think he will do good.
thx
Hey there,
Yeah glucose numbers got pretty crazy sometimes, but with close control it wasn’t too hard to get levels back on track. Keep posting on here on how everything is going.
Dave.
I have been a type 1 diabetic for over 54 years. This is not a disease for negative people nor is it a disease for people that like to complain. Nobody else suffers from your complaints as much as you do. I don’t know if I will live to see a cure but I sure the heck will do my best to take care of myself as best as I can in spite of all the negative side effects that diabetes can have. Yes the cure for Type 2 diabetes is already here: stop shoving so much food into your mouths. That’s the cure. Watch what you eat limit the sweets and carbs. Eat what you need to eat not what you want to eat. Type 2 diabetics already know this so why is money spent on a cure for a disease that was self induced and could be reversed by the person themselves? Pharmaceys, doctors, HMO’s all make money for all the drugs they can prescribe and that you have to take ( or so they make you think) until you are so loaded with drugs your are too dizzy to walk, think, eat, test yourself, give insullin etc. I take only insulin injections 3 times a day and that is my reality. I do what I have to do. No it isn’t easy, but what is? If you want an easy illness to cure, well there aren’t any, so stop complaining. Take care of your own body. Get over yourself. Things could be a lost worse and they will be, if you keep promoting a negative attitude about this illness and your life.
agreed, education and care goes a looooong way in maintaining quality of life….but most people with a few brain cells realize they are being screwed by the big pharmacy/governments…they are stifling efforts to cure diseases (including diabetes) if fear of loss of profits….type 1 diabetes is how many millions of no billions of dollars to all the insulin/test strip/meter/needle manufacturers…not to mention all these new “diabetic friendly foods” you see now adays..theres a huge market that’s affected by curing diabetes, and they are working to keep their profits as high as possible. Either way, a cure is inevitable..one day some big shot pharma CEO or celebrity or president/prime minister of a country will get diabetes and suddently there ill be a cure, only because someone important has it. Otherwise, its money in the bank and nothing but good for every one but the diabetic. Terrible.
True, medical researchers’ funding cannot compete with the big pharmaceuticals, but rest assured, they WILL find a cure. I’ve talked to many wonderful and caring research doctors, nurses and educators that are making it THEIR business to cure diabetes and other auto immune diseases. They have nothing to gain by holding out on their patients. There will be many more diseases to cure once they figure this one out!
Hey,as a person with type 1 diabetes, i really appreciate and value everybody’s thoughts.
But come on, think of yourselves more like people WITH diabetes, not “diabetics”.
and try not to use that term so much. I’m not a ‘diabetic’. I’m a person, and I have diabetes.
Heh, this discussion is still going on…pretty good!
One of the most important lessons for me to learn was that all of the nutritionists telling me to count grams of carbohydrates and trade off this and that and all this other non-intuitive stuff was worse than useless–it made me hate my dining and made me feel like crap about my disease. Have you ever noticed that being depressed or sick affects your blood sugar levels? It is really important to start looking into your food as something whole rather than an assemblage of nutrients.
If you are diabetic (or even if you’re not), I highly highly recommend two books by Michael Pollan _The Omnivore’s Dilemma_ and
_In Defense of Food_. Food in our country is a real problem, and eating right can be really delicious and fun as a diabetic. Don’t let the hospital nutritionists ruin your life.
Im 29 years old, basically…I don’t see any reason to get exited about a cure in my lifetime….maybe ill be proven wrong, who knows…BUT I doubt it, very seriously I doubt it. It will get put off and talked about until we are blue in the face but it will NEVER happen. Sorry to burst Y’all bubble but as adam said you best be making the best of life WITH diabetes because we don’t live in a society that cures disease. Money over matter. Its the way the west rolls. gotta live with it now whats so bad about having it for life, many have. And they had to deal with it through the primitive times…60’s, 70’s, 80’s…boiling needles, no glucometers, highs & lows and everything under the sun. I know many diabetics who are still going strong well into their 60’s who have had it since childhood. So i figure I got diagnosed mid 90’s…with the modern glucometers and easier testing/injections I should be able to live just as long as anyone. Cute.
Now, I completely agree with everyone here. A cure does exist, hell, several cures probably exist, but the hot shot execs of Pharma companies don’t want us to have it. They make too much money on us. Lets just say that I am a very bitter person. I’m 23 and just got diagnosed with Type 1. Though I only take 4 insulin shots a day, I have been robbed of my life’s ambitions. My job has kicked me because I’m “a safety and insurance risk” However because I worked for the government, they can get away with breaking equality employment laws “they make them”
Though everyday since I have been diagnosed, I hope that a miracle cure will come, I know that the odds of it being released are so slim, that I will die of a heart attack or some other ‘complication’
I honestly wish that there was someone willing to stand up, someone in government who was a type 1, that was willing to fight for type 1 diabetics. To make legislation to force companies into actually developing cures that labs create, whether it be islet cells, stem cells or some other type of voodoo magic that will make our pancreas work again.
With the amount of Type 1’s out there, you would think someone, somewhere would stand up for our rights. There is no reason that we can’t be normal too, it just takes someone to make that stand. It’s too bad we are all too depressed and pissed off with the world to actually do something.
Please, someone run for office somewhere so we can all vote for your backside…lols
Tom
Tom for P.M. !!!
I honestly believe if we put enough emphasis and effort into promoting LCT’s efforts with diabecell, we can see some big life quality improvements in the next 5 to 10 years. If we keep quiet, they will be hushed up and payed off to go retire on some tropical island. Lets do the right thing. Promote, use your voice. FUCK the big pharma like they have FUCKED us for the past “god knows how long”
Hi all brothers & sisters who share this incredible burden of a disease. My name is Wesley, I live in South Africa, I was diagnosed with type1 diabetes in 1998, I am 27 years old. My father died before my very eyes due to diabetic complications at the young age of 42, I was sixteen at the time, two years later on my eighteenth birthday I was diagnosed with this insipid disease. Being at the prime of my teenage years I was heavy in the parting scene, I was in denial and continued parting for six hard years! I even managed to survive six months off insulin. But unfortunately it caught up with me in the end, the past couple of years having been horribly debilitating. My system cannot handle alcohol & as this is something I dearly miss. Just having friends around, good laughs & a few drinks. A thief can steal any replaceable material objects you own, but when it is your health that is taken, it is something that cannot be bought back. The snakes in the pharmaceutical empires are just capitalizing on an opportunity at something that was rightfully yours, your priceless health. Believe me, we live in a wonderful & amazing world & cures do exist! But money is the overriding factor, believe me, if you had a chance to be cured, someone in the ranks of the serpents pockets would become lighter! But hear me when I say this, brothers & sisters do not lose hope, the rains are coming soon, to wash away type1 diabetes. TO LONG HAVE YOU SUFFERED, BUT NO MORE!!! WE ARE ON THE BRINK OF TECHNOLOGICAL BREAKTHROUGHS IN SO MANY FIELDS, ADVANCES IN MEDICINE BEING PRIORITY!!! This disease attacks your mind more so than your physical being!!! Soon I will give testimony of a friend of mine thirteen years type1 diabetic, completely healed!!! Healed for four years!!! Let not doubt poison youยre your perfectly made beings. Keep strong & know that none of you are alone!!!!
wesley, amen brother. take care of yourself.
To get a glimpse of some of the innovations and research going on now, go to http://www.diabetesresearch.org/Foundation/RegionalOffices/Northeast/RecentEvents/.
If not registered you will need to do so and log in. There is some very interesting and informative audio/video of keynote speakers from a recent DRI event. Some topics include stem cell research, regeneration, prevention and innovations.
BigD, I can appreciate your enthusiasm for LCT, but this idea will NEVER work. I posted this on the CWD site a while ago. It has NOT been edited here.
Ellen and Teresa, the idea of a ยencapsulatedย islet has to be one of the poorest ideas for the control of Type I diabetes that I have seen over my 16 years with the disease. Here is why:
1. Fibrosis. Any foreign body placed in the peritoneal cavity as is suggested for these encapsulated islets, will be met with fibrosis covering the device/devices. This will lead to,
2. Cell death. The life expectancy of a islet cell outside itยs native environment is limited. The pancreas is a highly vascularized organ, as such islets do not respond well or survive well when placed in other environments, especially the closed, or semi closed environment of a ยcapsuleย.
3. Retrievably. Letยs say you have implanted a few thousand of these encapsulated islets in the peritoneal cavity, they are met with eventual cell death and fibrosis surrounding the capsule. How do you intent to retrieve them? Fishing in the peritoneal cavity is not something I or anyone else would recommend.
4. Lead and lag times. Okay so I have implanted a few thousand encapsulated islet cells into my peritoneal cavity. If you recall from number 2 above, islets in their native environment are highly vascularized. Enclosing these islets will lead to lag and lead times of the islets ability to sense and respond to glucose. So the curve of glucose that the host is experiencing and the response to it will not be in alignment. Not good. Especially for children who may or may not rely on others when experiencing hypoglycemic episodes.
5. History. The ยencapsulatedย islet(both micro, macro and even sheet) has been attempted ad nauseum over the last 15 years. The list of companies that have come and gone attempting this are many, the dollars spent attempting this I am sure run into the hundreds of millions. Off the top of my head I can remember: Encelle, Vivorx, MicroIslet, AmCyte, Islet Technology, Cero Medical. And that is just off the top of my glucose challenged brain!
This idea will NEVER work. Period.
I don’t think they would be doing successful clinical trials in 4 countries with nothing but positive results if it would not work. I have been following LCT’s progress for some time and this new approach with the sea-weed derived encapsulation approach has top researchers very exited about its future. And with the amount of crap i have to go through in a day, i could give a flying shit if there was all these ‘side effects’ you mention. Remember, the original type 1 patient has had these cells living for 15 years with no side effects and a much improved quality of life.
Read :: Living Cell Technologies Reports on 12-Month Clinical Effects of DiabeCell(R) at Annual General Meeting
http://www.earthtimes.org/articles/show/living-cell-technologies-reports-on,610376.shtml
I don’t think they would be doing successful clinical trials in 4 countries with nothing but positive results if it would not work. I have been following LCT’s progress for some time and this new approach with the sea-weed derived encapsulation approach has top researchers very exited about its future. Remember, the original type 1 patient has had these cells living for 15 years with no side effects and a much improved quality of life.
Read :: Living Cell Technologies Reports on 12-Month Clinical Effects of DiabeCell(R) at Annual General Meeting
http://www.earthtimes.org/articles/show/living-cell-technologies-reports-on,610376.shtml
Actually, the first encapsulated islet transplant recipient, Steven Craig, committed suicide!
Fortunately I got to meet him before that happened.
If people aren’t making a profit off controlling diseases instead of curing them, then answer this…
What was the LAST major disease to be cured since polio?
(keep in mind polio could never be controlled, hence no profit machine)
I completely agree with Jenkins. I can’t think of a single disease that has been cured since things like Polio, Syphilis and other deadly diseases. Hell, even things like HIV have drugs that help people manage it now…are you telling me that pharma companies are not making a Shite ton of money off of that?
I was told by a young doctor “what I would love to do, is give you immuno-suppressants, stick you in a clean room and wait for your body to do it’s job. Then after you are fixed and your pancreas is working again, fry your immune system and make it start itself back up again. Sure you’d need your shots and such again, but at least you wouldn’t be diabetic anymore”
My response was “that would rock” Because personally, this disease has ruined my life. At 23 I had to give up my job “which I loved”, cut out drinking and eating anything with a bit of carbs or sugar. The reason for that is that since I am a new diabetic, my body is still deteriorating. What worked for me in regards to insulin/carbs and such is no longer working. I am constantly seeing higher and higher sugar readings even though I keep bumping my insulin up and up. So until my pancreas finally dies and I plateau (requiring vast amounts of insulin) it’s going to be hit and miss, putting my body in a constant state of DKA. I cannot, therefore, do any vigorous labour for fear that I will die.
I know, same story as most of you out there, I’m sure. However, as I have said before, I do not think it is fair. With all of our technology, you are telling me that you cannot cure this disease? I say BS. Too many organizations at universities have come out and said “we cured lab mice” or ” we cured people”, it’s all over the newspapers and the internet (I know, lots of misinformation out there) but where does it go from there? A lot of these ‘finds’ happened at the beginning of the decade, we are now at the end. Ridiculous.
There, I’m stepping off of my soap box now.
Tom
and again, almost on cue yet ANOTHER breakthrough curing type 1 diabetes in MICE, this time with cancer medications apparently ‘resetting’ the immune system. I give it 2 years before this one is swept under the carpet.
Tom, I agree. Its like they have the future planned when and where they are going to have a big ‘breakthrough’ just to keep people hoping and believing….it will amount to nothing, and I will admit I am wrong when I am cured…I’m not expecting that any time soon. its all money and nothing else.
Tom you need not give up anything, my son is 12 has been type 1 for a year now,we just came back from a soccer game were my son played in 3 games in 5 hrs. We do the insulin adjustments,and he stayed fairly good for all the games, no lows,and only a bit high at he start of the first game.
So you are 23 so if you just think what you are going to do for the day,high exersise ect, just learn to lower you insulin dose that will afect you the most during high exersise. you should search Mr universe 2006, look at him he,s type 1 since 11.
some of us are lucky and we gave good glucose awareness, and our bodies react predictably to insulin. others do not have this fortune and controlling glucose levels is a game at best. Type 1 is striking KIDS, it strips you of your best and puts a shackle around your ankles for life. It need to be cured, now.
I recently had the opportunity to tour the Diabetes Research Institute at the University of Miami. This is a dedicated group of researchers and doctors committed to curing Diabetes. They are funded by JDRF, ADA (I believe) and many private donations through their foundation. They work with researchers around the world and are not affiliated with pharmaceutical companies. They have the ability to fast track ideas right in their own labs. They all have the same agenda – to cure diabetes. Here you can see and feel HOPE. http://www.diabetesresearch.org/DiabetesResearchInstitute.htm
I read that diabetes kills more people per year than breast cancer and AIDS combined but receives one tenth the funding of just one of them. I’ve had it for 25 years and I’m so tired of it. I just want out.
this article is 2 years old, wow…i say make a new discourse article on one of the new methods. Either LCT’s encapsulated cell therapy (which is still going strong in trials compared to previous encapsulated approaches) or the cancer drug that is “erasing” the immune system, and when the immune system is re-introduced type 1 diabetes is cured!! easy at that. I have no doubt that if any type 1 diabetics immune system was erased, and re-introduced that all type 1s would be cured, this is common knowledge and a safe practice as long as the patient has absolutely no exposure to outside germs or viruses while lacking an effective immune system (probably should life in a “safe” room for a period of time…) These things are without a doubt being with-held from us and i think we should emand to know why. If it cures diabetes it cures diabetes who gives a shit about the 10 years of research it needs, who gives a shit about side effects ans safety…diabetes is NOT safe, and im sure in 5-10 years there will be diabetics who have died in diabetic related accidents or simply done themselves in not knowing any other way out…THIS MUST BE CURED
Hi to all: I am a type 1 diabetic and have been for 55plus years. That’s right 55! I’ve always been extremely brittle and have been on a pump since the first (ugly) came out in 1978. I could list all the problems, but most of you know of or about those. I’d just like say that still, even as a type1diabetic – life is beautiful. I’ve just been stood up and rejected (again) but still I’d rather be me than anybody I know. Yes, it takes a lot work and I’m well aware that everyday is possibly my last but I would not be me (independent, strong, creative, determined,persistent, and have experienced God’s miracles (over and over) …. any other way. So for the belly aching, I say, – suck it in and praise God that we have the tools we have today. In the 50’s life was a real challenge on a daily basis. As for why the cures are being withheld.. wake up folks it’s politics – pure and simply. If DM were cured a multi-billion dollar industry goes down the drain, and what on earth would happen to the social security system if say for one year nobody died from complications of dm. Now there’s mathematical condundrum!!!! God bless you all.. Stray strong and don’t give up the fight or the faith — Mariscott
So what about this cure now since it’s been 2 years? Does it work on humans or what?
Here is a good link for a positive look at ongoing diabetes trials: http://forums.childrenwithdiabetes.com/showthread.php?t=30768
Type 1 diabetes is generally seen among the children and it’s very scary. But no need to panic, yeah it’s serious but people can live happy and healthy lives if you know how to deal with it. Hope there will be a cure for it soon, but until that time, taking care of yourself will do the job.
I agree that diabetes shouldn’t be as scary as it seems. Taking care of what you eat and following a healthy diet plan will do wonders.
Having diabetes doesn’t mean that you have to start eating special foods or follow a complicated diabetes diet plan. For most people, a diabetes diet simply translates into eating a variety of foods in moderate amounts and sticking to regular mealtimes.
Type 1 diabetes can’t be prevented, and there is no practical way to predict who will get it. There is nothing that either a parent or the child did to cause the disease. Once a person has type 1 diabetes, it does not go away and requires lifelong treatment.
The diagnosis of Type I diabetes shaves 15 years off a person life span.
I was diagnosed 18 years ago, in that time I have witnessed 10 people succumb to this disease.
The youngest of these was three years old, the oldest only 54.
Type I diabetes kills!
I just wanted to say I found this site on accident and I am glad I did I am the only one in my family with diabetes and I have had it for 17 years I am 23 now. Married and have a little boy, things are not easy and I tend to take care of myself last, not on purpose i just forget about me. Its nice to have people to talk to that understand. I look forward to being able to talk here and help in anyway that i can to anyone that needs it.
Idiot above wrote “Having diabetes doesn’t mean that you have to start eating special foods or follow a complicated diabetes diet plan. “
Having Type I diabetes DOES mean your life expectancy will decrease by 15 years, you will NEVER be able to get life insurance(this is very important if you have a family that depends on your income), will NEVER be able to hold certain jobs, and will in general have a life filled with misery and regret.
That’s Type I diabetes in a nutshell. Oh and did I mention if you are male, there is a good change you will end up impotent!
To Jonsmom: so glad your son isn’t celiac but please look into the gluten-free casein-free diet (if you haven’t already). There is a lot of research that connects diabetes and celiac sprue both being autoimmune disorders. This diet also benefits people with or without health problems.
Hang in there, everybody! Everything is possible!
Reading all your comments scares me to hell, I’m not Diabetic, I have my health, my daughter however wasn’t so lucky , she developed type 1 Diabetes at the early age of 3 (now 12) I try to pretend it isn’t happening, but every night I lay awake dreading what her future holds. I wish with all my heart that it had been me not her. I wish you all well.
Hello everyone, I see from reading some of the above comments a pretty dark and negative picture of diabetes. Just to add a little balance to this I would like to share my experience. I am 46 years old and diabetic type 1 since about 11 years.
Agreed if you do not take any action, diabetes will get the better of you.
However, if you can obtain a pump DO IT NOW. I am fortunate living in France where pumps are provided free of charge by the health authorities. I have been using a pump for about 2 years and found that those radical sugar lows no longer exist for me or very rarely.
More importantly whether you have a pump or not I have found that practising the Chinese art of Chi Kong (something similar to Tai Chi) extremely beneficial to the point that I feel GOOD, in fact I feel very Good, no depression, no bad moods (well from time to time like anyone else).
Now I still have those poor blood test results like many of you, as this is not a cure but as I said I feel good, and when you feel good what does it really matter…
Someone mentioned above they got good results from yoga, I cannot comment on this as I do not practice it, what I know from my experience is that Chi Kong and mediation makes me strong and invigorated.
This may sound a bit, oh here is a guy that hasn’t got his feet on the ground or whatever, but I assure you that this is not the case. I am an everyday person, I work in a highly stressful environment (Investment banking) and with the practice even the stress no longer effects me too much. Furthermore, I have other health problems due to a serious motorbike accident when I was 17, and the Chi Kong helps me enormously. I will state that I do not lower or stop my insulin intake, that remains the same.
I am very serious this practice allows me to lead a near to normal happy life. I have tried stopping the Chi Kong many times and end up very sick, each time I practice regularly again my health and me feel good.
Don’t wait for the medical people to provide the solutions, take their medicine and then take your health into your own hands, Chi Kong and meditation will make you much stronger. However, it requires action on your behalf. You cannot be passive, regular exercise is required everyday. If you cant find a good Chi Kong teacher, try yoga or Tai chi
Your choice, you decision, your health and the outcome is in your hands, but I confirm that it is possible to reduce the extremely negative effects of diabetes.
Lastly this may be very difficult for you but try and be at peace with the diabetes, its in your body so let it be, no need to add additional negative health effects by hating and getting angry with it, very hard I know. I know we cannot get rid of our feelings but I have found it is possible to replace a feeling with another, so try replacing the hatred with peace. Although, to do this successfully you will need to start meditating. For this as well with Chi Kong you must have a good teacher, avoid learning from a book
Over to you, peace and longevity to all
Sam
i’ve been type 1 diabetic for 2years now. My Problem is am finding it difficult to understand that diabetes is as a result of the destruction of the beta cells of the pancreas due to infiltration of immune cells to the cells of the of the pancreas producing insulin. Now if this is the case, even after injection, does this process still continue…..do the immune cells stop attacking the pancreas? and if not then how are we still surviving and do we need panceas transplantation?
Am also doing a research project to discuss how viral infections cause diabetes, how significant is this?….please comment soon.
worried diabetic
I am deeply in love and planning on getting married to my fiance who is type 1 and all this message board has done is scare me. It makes me wonder what I’m getting in to but I could never imagine my life without him. Help!
To scared: Please don’t let this board influence you. Unlike many others I read, this one is populated with some negative-thinking people. Does your fiance take care of himself? Is he under good care? If so, he should lead a long and healthy life. Attitude has a lot to do with it.
I think my son is actually healthier in some ways than his friends as he needs to be more aware of what he eats (although he eats anything he wants) and finds that exercise helps his numbers dramatically. Plus, on so many fronts right now, ideas for a cure and/or better management tools are coming out every day. I enjoy reading about those much more than listening to people feeling sorry for themselves! Yes, diabetes is a challenge, and there are definitely health risks. But I can think of a lot of things that are worse.
Good luck to you and your fiance!
Please see this web site for info…….its just one of many hopes….. lctglobal dot com
and to use the inspirational Elissa Renoufs (diabete-ezy.com)motivation
“A Pessimist sees the difficulty in every opportunity;
an Optimist sees an opportunity in every difficulty” – Sir Winston Churchill
My mother has diabetes and she is been working with this new cure. The doctors are positive about the response.
I know a guy who is 66 years old, diagnosed at age 9 with type 1. He is currently complication free. No retinopathy/neuropathy and in overall good health. His secret first and foremost was glucose control. Aside from that, for decades he took fish oil (omega 3, flax oil etc) daily along with supplements including taurine and B vitamins. There is extensive research into the effects of taurine and diabetic complications. Seeing his health today, i believe it.
On March 28th 2009 I lost my 19 yr old son to this disease.We didn’t even know he was becoming diabetic,his death was at onset due to DKA,his only symptoms were those of a stomach flu,which had been migrating thru the house.He wasn’t feeling well all of 2 days ,apparently went into crisis during the night and I found him in the morning.My son had Down Syndrome which they believe contributed to his rapid death,due to his genetic issues,his body couldn’t cope and it took him very quickly..I’ve become very educated since then and have found other parent’s who’ve lost their children to this,mainly because Type 1 is rarely discussed in the well-child pediatric setting and many parents simply do not know the symptoms.Some of the stories I’ve read are frightening.Due to the chance of his siblings also developing T1 I had their Dr run Glucose screenings.My 17 yr old is pre-diabetic and is now taking Metformin,my others are fine for now but will be checked here and there because of the risk .I passed this on to my children.T1 &T2 are in my gene pool.My great grandfather was a brittle diabetic,I had GD with all of my pregnancies.I hope and pray they find a cure.Thanks for listening
ladies and gentlemen
My name is Alex I am a type 1 diabetic and i was diagnose when i was 23. I am 26 now.
This sickness really suck and we all know it.
I am one of those people that takes chances and act on my instincts, I disagree with many ideas and BS of today medicine.
to make this short, has anyone head about the Tuberculosis vaccine to be used for type one diabetes.. i read some interesting information about and a trial in that is going in Boston right now.
Anyway i get that stuff here in the US, since it has been terminated; but i am going to Argentina and Panama this winter and i am going to get the TB vaccines, “under the table” and experiment them on my self. Crazy huh.. well someone has to do it and try it. After all great discoveries are discovered from people with crazy ideas like me.
This TB might be a solution on type 1. I let you on this after my experiments. Lets cross fingers. By the way i am not retarded i am Bs in Industrial Engineering, and MS in Engineering Management. I also spend this three year on researching data and information by my self and on my self on type one diabetes. So i am Dr with no title in the medicine field.
Anyway that is all
I will let you all know if i discover anything big ๐
Have you found any thing that promise yet?
The website you may be looking for is:
http://www.faustmanlab.org
This is link to the latest PDF file about the doctor’s research.
http://www.faustmanlab.org/docs/newsletters/Faustman_updates_f09.pdf
jonsmom, well said.
For all of the others here still using the word “diabetic” please delete this word from your vocabulary. I have had Type 1 diabetes for 35 years. There is nothing that pisses me off more than someone saying to me “so you are diabetic” or “how long have you been diabetic”. I then have to explain that I have never been “diabetic” I have a friggin name and it is not “diabetic”.
Personally, I don’t like being labeled. Believe me, I am just as frustrated as everyone else here. None of us should still be dealing with this issue.
Well I will begin by introducing myself as Peter. I am 30 years old and have been a SURVIVOR now for 16 years… I have suffered with the complications over the years and have dealt with the bullshi* of the system in being a type 1… As I have read in earlier posts there is no such thing as DIABETES… Just because they can’t give this disease its own name and have to classify both TYpe 1’s and Type 2’s together in one group is pure bull… We are two totally different diseases… As from all the research I have done a type 1 can live a normal life eating as much carbs as they would like as long as they counteract it with more insulin… Last Friday night I was watching Supernanny and Jo went completely nuts because she couldn’t deal with the stress of a family with a son who was diagnosed with Type 1… But one thing she said hit home… She expected mom and dad to control the child and their diet… I am sorry but a Type 1 is going to do as they please… They are at the mercy of the disease and no one can help us except ourselves… I have spent days in the hospital for the attempted suicide attempts, the ketoacidosis, the foot ulcers, the neuropathy… You name it I have had it… The cure though is NEVER going to come because if they did come up with a cure we would put too many people out of work… My current employer just sent me a statement of what my medical costs were for the last year… I paid out of my pocket, or should I say my credit card did, the amount of $4500 just in doctors visits and supplies… The insurance company and employer paid out almost $80,000 on me in 2008… That is just the monetary figures… That does not take into consideration the stress caused by this disease, the stress on my family, the thought that one day and who knows when I will be gone… I can’t get disability because I am not disabled according to the federal government… What do I need to do to get a little help? Anyone have any ideas? I know I am a drain on the economy but at the same time I know that I am helping make other people rich at my expense… i Know I ramble…
In closing I want ALL the type 1’s to answer this once question and or email me directly because I have been tracking this for some time now… When you goto the doctor how often are you told to do everything that a Type 2 is told to do… Just recently I got put on Metformin… What has it done for me… NOT A DANG THING…
If anyone is interested in an actual “CURE” check out http://www.faustmanlab.org/ Also, check out http://walkingwithdiabetes.blogspot.com/2009/01/video-denise-faustman-md-interview-on.html for a video interview with Dr. Denise Faustman. Her research is the most promising I have heard of in 35 years.
Russ, Faustman is no closer to the cure than you or I!
Read this entire blog from start to finish.
hey move to canada, my son is type 1 for 2 years now, not happy about it but were dealling with it,
and he,s a great carb counter.
we get to claim him under the disability tax credit here in canada, this we give to him in his bank for future use when he is older, sum provinces here cover all supplies plus give you a pump, Alberta were we live does not, but it will come.
StillType1, I am not sure how close Dr. Faustman is to actually curing type 1 but I believe she is on the right path. Is there some reason that you think she may not be? I will read the entire blog again in case I missed something. ls there anything specific I am looking for?
All I know is I have been donating to the JDRF for years. The JDRF has had 40 years and 1.3 Billion dollars and they are no closer to a cure than they were 40 years ago. I am ready to support someone that is trying something different.
The fact there has not been any diseases cured bothers me. The closest I am aware of is polio in the late 50’s and this was not actually cured but eradicated through vaccinations.
Something is very wrong here and I am tired of it.
You also may want to check out another forum, that is filled with information about Faustman and most other research going on out there:
http://forums.childrenwithdiabetes.com/showthread.php?t=44245
Follow up on by: Alex Alessio C. at October 17, 2009 09:53 PM
SO i am in argentina right now and i was able after a few trial and error to the my second BCG Vaccine shot, i got this in my right arm while my first one is on my left arm. ANYWAY.. i who that one shoot would have done no miracle and i obviously need much more that one simple shoot to get a strong conclusion on this experiment.
The first two day after my BCG shoot i felt great, i kind of felt that i went back in time a year or two, a bit more sensitive to the insulin making me feel better and the need of a little bit less insulin. At first i was not sure if it was just a psychological effect that i was feeling better just because i was able to get a BCG shoot at the age of 26. However i really think that is was not psychological state of happy mind.
Here is the problem.. i was able only to cheat the system here once.. so i think think i will have better luck in my next country i am going to visit next week to find BCG vials and take them by my self….
umm will see how this goes. I can see myself already with a bunch of BCG vaccine scars in my arms…
If i get the number of BCG vials then i can get shoot every 2-4 days. Oh boy, meaning that i will also have a light fever for a long time.
anyway… let see how this goes.
umm i am not doing to good my grammar lately ๐ i apologize for that >)
Alex, keep us updated on how your BCG experiment is going!
Thanks
Hi all, it’s 1am in Australia and I’m tryin to find a little help for my boy Josh 2 years old and type 1 for 6 months now. I read this and it makes me wanna cry to think what he and you all might go through. I will be with him for whatever it takes and however long we both live. There is always the question of why but really there is no answer. All I wanna do is make him smile and laugh until the day he dies which I hope will be long after I do. I’m lookin for some answers to good foods and positive ways to get through day by day keepin him laughin. If you are livin anywhere on the sunshine coast QLD Australia I’d even like to meet you. I’ll deal with the downsides when or if they happen, but till then I’m greatfull to still have my little boy. I work with a guy who lost 2 kids one at 3 and a half the other at 16 to a muscle eating disease. Theres always someone worse off and someone better off. Please look to the bright side as much as you can. Your mind is how your life is lived, and your body is the providing tool. Consentrate on a healthy mind. laugh as much as you can. Theres a lot of resentment on this site which I’m not sayin is unjustified I just want you to try something different and get back your smile. Take care we are all equally important
my son has type 1 for 2 years now,
just found sum for interesting stuff, google Exsulin.
I am a father of a 4 yr old girl with type 1 for 2 and half years now. After reading many posts here I know what my wife and I are doing is right. We are moving over to a raw diet and green smoothies. After reading everything the Boutenkos have been through I know for sure this can turn around. I have noticed a decrease in insulin. We also do energitic balancing and when we are giving her her drops and things it helps with less insulin and better numbers. We get alot of flack for our lifestyle because it is not the everyday norm but her health and future depends on us for making the best decisions we can for her right now. And we feel better than ever. And for those that don’t agree, that is your decision because after reading alot of posts here, it is time to think out of the box. Don’t eat processed foods or fast foods. We get backlash from our parents as they were raised such a way and didn’t affect them. As they are on high blood pressure pills, heart pills, type 2 pills. I just look at them and smile and say “whatever” keep taking your pills and eating your great food. For some interesting reads goto http://www.rawfood.com
I’d love to see the expression on my 18 year old son’s face if I told him we would be eating raw foods and green smoothies from now on! ๐ But seriously, it is important for everyone to stop the processed and fast foods. I can’t help but think that all of the junk and chemicals in our diets and environment is responsible for his diagnosis (at age 16) to begin with.
As a college student in Australia, Maria Koulmanda started studying type 1 diabetes as part of a summer job. Thirty years later, Koulmanda and her colleagues at Harvard Medical School now believe that they may have discovered a cure.
hi ther dave, my son is 13 , type 1 for 3 years now,he eats responsible,we are a great carb counting family. my son is very fit,plays soccer 10 months of the year,there is no fat on him.
i went on the raw food site, and it would be ok if he sat around all the time,but there is no way he could go to a soccer game with smoothies in him. sum games he needs up to 60 carbs extra and a 90 % reduction in insulin or he will go low. he tests every 15 min during a game.
google bobby clark an nhl hockey player type 1 since 11 ,mid 70,s now. he drank 2 big coke before the game,choclate bars,and more. not saying thats the right way now, but hes still kicking.
Lately there has been a study using stem-cells and it looked promising. Diabetics have been able to stop taking insulin injections and their bodies started to produce the hormone naturally again.
Well, I’m a Type 1 for 9 years now and I feel that you can’t trust the drug companies. It’s about the dollar and profit and if they cure diabetes then you know how much money they will lose. These drug companies don’t care about you or how it hurts your family, their concern are if you are going to use their drugs. Now that I’m unemployed with no insurance, no money to pay for my meds, you think for a second that these drug companies will help… then the joke on us. So I hope I can get another job so I can at least pay for my med, I have asked the government for help but they turn me down for medicare, it was just until I can get a job. I lost hope and pray I don’t die from this disease.
Have you tried calling the sanofi aventis prescription assistance program…they may provide your insulin free of cost if your income is low enough…
Hi Tampa,
I hope you have found a job, now. I am also diabetic, I a agree with you about the drug companies doing. I think it can be cured!
I ran across a lot of helpful diet plan suggestions on this site called the celebeater it talks about celebrity diet plans along with movie star celeb workouts. It helped myself so I simply believed I’d personally pass this particular on for anyone out there battling weight loss.
any word on alex?
i took those shot at the end on Dec 2009, I only a total of two in my arms. I guess you can see the scars that they leave. Sooo to be honest at first i felt better for 1-4. But again i was debating if this was just a psychological thought after talking those two shots of tuberculosis vaccine in Argentina. I know that only having two shots in my all life would not be enough. But the problem is that is so hard to get them since is illegal to someone just give shot of the vaccine especially at the of 27. anyway a friend doctor wrote a note and from that i lied to this vaccine public doctor that i was american and they don’t give that stuff over there sooo bla bla i really want the vaccine to be safe. I wish i could of just paid the person and get 15-20 shots and make the experiment on my on. But since my mom was around too at that time, i just let go.
So here i amโฆ with no answers yet. But i can tell you that my A1C is 4.6 which is pretty much the same as non-diabetic person. So maybe it also did some physical change in the body. it is hard to say. I need to get more and find some half corrupted doc or someone you does not care and try at list 15 shots consecutive, and leave some pretty odd marks on my skin.
soo i am sorry people. Maybe a flight to a place like india and just give 1 or 2k to a doc he might give me the 15 vials. I mean why not!! it is so easy to buy Oxycotin from many corrupted doctor in the US, so this shouldn’t be so bad.
๐
1 i took those shot at the end on Dec 2009, I only a total of two in my arms. I guess you can see the scars that they leave. Sooo to be honest at first i felt better for 1-4. But again i was debating if this was just a psychological thought after talking those two shots of tuberculosis vaccine in Argentina. I know that only having two shots in my all life would not be enough. But the problem is that is so hard to get them since is illegal to someone just give shot of the vaccine especially at the of 27. anyway a friend doctor wrote a note and from that i lied to this vaccine public doctor that i was american and they don’t give that stuff over there sooo bla bla i really want the vaccine to be safe. I wish i could of just paid the person and get 15-20 shots and make the experiment on my on. But since my mom was around too at that time, i just let go.
So here i amโฆ with no answers yet. But i can tell you that my A1C is 4.6 which is pretty much the same as non-diabetic person. So maybe it also did some physical change in the body. it is hard to say. I need to get more and find some half corrupted doc or someone you does not care and try at list 15 shots consecutive, and leave some pretty odd marks on my skin.
soo i am sorry people. Maybe a flight to a place like india and just give 1 or 2k to a doc he might give me the 15 vials. I mean why not!! it is so easy to buy Oxycotin from many corrupted doctor in the US, so this shouldn’t be so bad.
๐
Hey Blair, this is Dave and about eating raw food and sitting around that is false. It takes time but eating smooothies and fruit along with veggies it works great. I have a 4 1/2 yr old that does not sit around. Doesn’t play soccer 10 months but does play hard and has 2 older sisters she keeps up with. What I find is that she is taking less insulin over time and doesn’t have the lows she use to have. And as for your hockey player–really drinking coke and eating chocolate bars.. If it works for him great but is there more behind it that he doesn’t tell? I think so…Just my opinion…What is that doing to his body? For me after reading many, many success stories with raw food and nothing else that comes close to it I will take my changes with ME being in control and not the doctors or some super star. I look at the long term and I want my child to be healthy again and in my opinion raw food is the only hope because the drug companies will not let diabeties be cured..My 2 cents is do more reading on raw food it is changing lifes not only diabetics but many many others.. God has given us everything we need, we just need the intelligence to use them the way it was intended. The body can cure itself given the proper nutrition. Thanks and good luck to all with this dis-ease.
I need some help from anyone with Type 1 diabetes….my mother has several low blood sugar episodes a week…sometimes 2-3 in a day. Is this normal? She has had several while driving her car and we’ve had to drive around town looking for her because she is unable to tell us where she is. Luckily we live in a small town. I’m at a loss as to what to do..
I cannot believe that people can be so dramatic about being diabetic.I am type 2 and have been for five years. Before this I was type one, and I live a normal life with my children and grandchildren around me .If you control your eating /drinking and do some physicle training /walking ,you will not feel any different from people that are not diabetic.There are worst deseases out there and we should thank the Lord that we are free of them.Being positive about Yourself is the best defence against any desease.
Do not take being a diabetic as “Death sentence “.Reserch is the best way to fight back.
Knowledge is power and if we have this we can control our own destinies
ok. You cant go from being a type 1 to a type 2. So first know what your talking about. You may have had severe type 2 diabetes and now need less or no insulin. You cant reverse type 1 Diabetes. Its alot easier to manage the diabetes you have because your overweight then that of a type 1. so know what the hell your talking about before you post something.
Being diagnosed as a Diabetic doesn’t really give you any restrictions on how you can go about your daily life. In fact, it should be considered a wake up call that you probably need to change your living habits. For one try exercising a few times per week. I’m a Type II Diabetic myself and I have a wonderful life. But when they told me I had it I was overweight, you could even say I was a fat slob. But now I never drink any sodas but diet sodas, go to the gym and I seem to be able to keep my blood sugar levels within reasonable limits. I hope this helps some of you out there dealing with Diabetes.
Vicky, do a little reading —–once a type 1 always a type 1—- cant change from a 1 to a 2.
hi again Dave, the amount of insulin that you use,or don,t use only correspondes with the amount of food intake that your child takes,feed them carrots ond veggies all the time ,my son would be on a very low dose of insulin also, but he likes his steak and potatos,and apple pie. so he gets more insulin to cover the carbs. and i was just using Tom Clark as an example of some one that never
followed a strick routine for his treatment, and he is still around and kickin at an old age,and i do believe in fairly good health.
And dont get false hope,your not gona fix him by prayin,we help raise money for research,That is the only way this is going to be fixed
TtlGymXLS, y r wht s knwn s “dmbss”. Typ nd Typ dbts r tw dffrnt dsss. Typ s tmmn dss t s nt ssctd wth bng vrwght r lz.
Bng dbtc ds pt rstrctns n yr lf. Y wll fnd ths t sn ngh. ntl thn pll r hd t f yr rctm, nd d sm crsr rsrch bfr pstng yr bllsht.
Thnk y!
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Raising money for a cure? What a joke.. cure the dis-ease and how many people lose their jobs? Do you honestly think that they have getting a cure in their best interest? They lose too much money if they find a cure. And another thing- steak and potatoes and apple pie..Once in a while not bad but as a staple of the Standard American Diet (SAD) Think out of the box. Research, research.. Being 80% raw and the health benefits that contribute to it..Read Excitotoxins by Russell Blaylock. Everyone has their own beliefs and I do respect yours, just too be clear, I am stating my own opinion here. But if I can help my daughter live a better life I will do it.. And there is some info out there if you want to compare the nutriental info on greens and it is amazing at how much of what you need is there and very plentifull. God Bless
well dave good luck hope everything goes ok.
Support Diabetes Research Institute! They ARE making patients insulin-producing as we speak! Still have a ways to go, but it IS WORKING!!!
Well I am new here. (Great posts btw!) I just spent most of my evening reading hundreds of type 1 diabetic forums. So I am going to save my ranting and raving for some other time and try to get straight to the point. I have now been type 1 for 23 years. Was doing ok and then all of a sudden everything went to hell. My Mom died at the age of 28 from diabetic complications (I was 6) and my maternal grandmother had to have her leg amputated before she died 10 yrs ago from type 1.
Now I could go on and on and on about how much money this disease produces for the pharmaceutical companies as well as our gov’t. But you already know this. Fact of the matter is our law makers know that this country is becoming over-populated so why not induce population control while making money? Ingenious right.
I truly believe we need to fight. We need to call “them” out. We need to produce a film that shows the world just what is going on and then dare “them” to prove us wrong. WE NEED TO GO MICHAEL MOORE ON THERE ASS!
Why does it cost $123.00 for a bottle of insulin when it costs the pharmaceutical company around $12.00 to produce it?
How many Doctors and Scientists and small drug companies that have FOUND the cure have been bought out by the FDA and P.C.’s?
How much has the gov’t collected in tax revenue on insulin sales alone?
These are just a few questions I would like seen answered and made public. I mean very public – as in – let’s produce a film. Will this cure diabetes…Nope. But if the rest of the world who is not a type 1 diabetic doesn’t understand what it’s like to go through this horrible disease – they will never join the fight – and trust me – we need as many people on our side as we can get. At the very least – it will call these pharmaceutical companies out.
The film would show what it’s like for a 2, 12, 20. 30. 40, and 60 year old to live with this disease – and I am talking about true type 1 diabetics. Most people think that diabetes is from over eating and not exercising. The film would also answer important questions as listed above. The film would show interviews with Doctors and Scientists that are willing to go on camera to talk about the cure and how the company they worked for was bought out by a pharmaceutical company. I could go on and on about what would be in this film but this would be a waste of time until I find enough people to get behind the scenes and the cause to help. If your with me or you have idea’s – email me. danielle.ifd@gmail.com
Hey – does anyone know Micheal Moore? ๐ – LOL.
In all seriousness though – we need to fight. It’s my belief that is all we have left. I’ve been waiting for a cure for over 20 yrs – don’t think I’m going to see one in my lifetime, but I am willing to fight for the cause so that future generations can win this battle.
Hope to hear from someone on this matter. Oh and btw – my background is film, advertising, and marketing.
Danielle
I believe the high cost of insulin has to do with the fact that there is no generic available, which would create competition. The patents don’t expire! This is due to FDA regulations that should be challenged. Also, think about this – Insurance companies charge us more for brand name, even when generics don’t exist! Maybe we should start a campaign to push for generic insulin. The only articles I can find about this are a few years old:
http://www.diabeteshealth.com/read/2007/05/23/5206/why-does-insulin-cost-more-than-ever-its-all-in-the-way-its-made/
I’m with you Alex! Have tried a 10% capsaicin extract on myself (to no avail) and would love to get a hold of some of that TB vaccine to try.The cap experiment was interesting for sure, but only seem to produce a warming sensation. Also, my girlfriend had to be careful touching me because once it was on, it seemed to go everywhere. There are just some places on the body at capsaicin should not go ๐
People seem to find all sorts of drugs online but can’t seem to get this TB vaccine w/o a script. Maybe I’m not thinking like a criminal enough.
You mention that your A1c is 4.6 but don’t say if you are still taking insulin or not? It reads as though you are taking insulin, still. Please update as to your current status!!!
yes, sadly i am still talking insulin. lantus and humalog. The amount has been the same since the start of my diagnosis. Which i find it very weird sometimes. You cant find it in the USA, they don’t give TB vaccine shots; maybe in some research laboratories but i don’t know any one that has their hand on it. So it was easier for me to get it in Argentina when i went to visit my mother. They give TB vaccine shots there, also in Europe and many other countries. But again, i was only able two get two shots. I might need more, who knows..
Forgot to put my second name.