TB shot and T1


(Anne) #1
 I am wondering if anyone has done any research or thinking about the research study that came out regarding folks with T1 Diabetes taking a TB vaccine, once, and then again after 4 weeks, and showing significant health results. I asked my daughter's endocrinologist if he was willing to give my daughter the TB shot but he said the study was too small to be conclusive. I contacted the folks who did the research and they sent me an application to be in the next study. That was of no interest to me since I don't want my daughter to be in the control group. I.  Don’t want to spend the next two years running to Boston and then finding out we never got the vaccine. 
  No one around here will give us the vaccine. They say the TB does not exist as a risk in the United States. I don’t really have the money to fly to India to get the vaccine and then fly back four weeks later to get the second vaccine. I feel desperate.  My daughter has a significant intellectual disability in addition to T1 and that’s why taking care of her diabetes is very difficult. 
 Pasted below are some links to the info, which you can easily find by Google. The 72 page study is on Google also.

(joe) #2

@AnneTrei

I happen to agree with your endo… as far as I know there hasn’t been a study big enough to draw any real conclusions.

If you contacted Dr. Faustman, why didn’t you ask if they can guarantee that your daughter won’t be in the control group… sometimes studies allow that for some portion of the groups.

no doctor can administer medicine “off label”. this means it’s not worth the doctor’s license to give a shot that is not the FDA approved application (Tuberculosis) for the shot.

Clinical studies pay for travel, meals, doctor visits, and sometimes for your time. That’s why they are expensive and that’s one of many reasons they get delayed or even cancelled. The TB/T1 “link” was never truly established, so beware of “internet research” because it’s hard to tell the fact from, well…, not fact. There is no guarantee of any kind that it will work as the study proposes, and there is always risk of adverse reactions. Ultimately you will have to consider if the benefit outweighs the risk, but we are not talking “heads or tails, who cares” here.

good luck.


(Bill) #3

Anne @AnneTrei, if this treatment really worked, every physician who treats a T1D patient would call that patient and get her/him to come into the office to get the injection immediately. It’s that simple.

If medical science ever arrives at the point where enough is known to “target defects” in a specific person’s immune system, then, and only then, will there be a vaccine or other procedure to “prevent” T1D.

After the above advancement is widely available, and after medical science develops a technique for reliably transplanting beta cells, we will then have a “cure” for T1D for those who already have the disorder.

A “cure” is going to take those two steps and in that order. Medical science has to arrive at a point where it can “calm” the immune system before it can reliably replace beta cells that are “lost.” And remember, it is the loss of beta cells that leads to a lack of insulin production, and that lack of insulin production leads to the symptoms that define T1D.

When you have seen as many “broken bodies” as I have, and when you have watched patients and families “chase” false hopes in their respective desires for a “cure,” the realities of the limitations of medical science become brutally obvious. What I have described above is what is obvious to me, and to most who have T1D, or work in the area of T1D research.

It is good to have “hope.” And it is good to “keep your mind open” to promising advancements in treatment of T1D. But to hope that a simple injection will in any way limit the day-to-day effects of T1D is, in my opinion, a waste of time.

It seems more reasonable to “hope” that each and every one of us can increase our “wisdom” (i.e., our individual and collective understanding) about this disorder and what it takes to manage it hour-after-hour, day-after-day, week-after-week, and year-after-year. To me, that is the only thing that will allow each and every one of us to live as well as we can until that two-step “cure” (described above) is developed.

Good luck to you!

Bill