Faustman Lab at Mass General Newsletter

[PinkRose]

As for all the accolades for Mr Levy's "insights", I've gotten more out of your post than all the bickering back and forth. Truth is, you don't get to be the head of your own research lab as Dr Faustman is, and win all those awards and peer-reviewed publications and so on, if she wasn't the "real deal". Honestly, I expect there to be paid shills for the JDRF in every major diabetes forum discounting any unprofitable cures or such things. That might sound harsh, but scientists, even those who aren't bought off by competing labs or mega-evil-pharma corps, still have egos and stakes. This include Dr Faustman probably, but she seems like such a sweet woman in her vids, and it offends me to hear anyone besmirch her integrity without incontrovertible evidence. As any scientist, she has gone down many blind alleys in her career (watch her videos), and makes no bones about having had completely the wrong ideas about e.g. islet cell transplantations effectiveness or appropriateness as an avenue for research, that I cannot help but respect her. Even if nothing comes out of this entire thing, I've grown tons and tons of respect for the very difficult field of medecine, notwithstanding my own personal stake in it. Sure I got emotional about certain topics which I didn't understand, but the more I read, the more I realize that people on here (no offense) are NOT experts either. E.g. stating there is no evidence to suggest BCG might affect T1D in humans. I am still a virtual baby in this field, but so far, just reading the first paragraph about how to boost the TNF-a levels in cancer patients, is more useful to me than 95% of the rest of the stuff I've read in here. That's not to be argumentative, I'm just stating a fact

Hoping, no one here has ever tried to claim they are scientists or medical experts. If you were seeking scientific/medical advice for your personal adventure with BCG vax, we are not the people to be asking. That is why I advised you to seek the advice of experts regarding your very specific questions on adjuvants & so forth. You should keep that in mind going forward, because we are only just T1s, like you, not experts. Nor do we, like you, have the time to be pursuing tonnes of research into this either.

The members who did post references to scientific research papers were doing you a great favour in doing so. You should consider all facts & evidence in this matter, not simply welcome posts from people cheering you on for giving them hope. Don't think sceptics of your venture are not as eager to see a cure materialise as you are. We certainly are.

If you consider how many attempts there have been to find a cure for T1, I think there may soon be university courses that will just cover the history of finding the T1 cure! My doctor told me that it is one of the most researched areas that has yielded zero results. Each time there are zero useful results, it thwarts other research from taking place. I have no doubt that Faustman is a great researcher & very devoted to the cause, but I am sure many others have been as well.

But back to the point about us not being experts. If all attempts to speak to experts fail, remember a good friendly sympathetic psychiatrist is a medically qualified physician who may be able to offer you advice. Along with a lot of other advice as well, if you know what I mean. I wouldn't try to be getting any more pus-filled sores on those arms if I were you until at least you had a lot more information about what you're doing. If you are correct and counselling is not needed, then you will be all the wiser for finding this out! You have nothing to lose by seeking help Hoping, only much to gain.

The best of luck to you

[jenb]

Hoping....while I wouldn't try your avenue of exploration, I can say that history is full of cockeyed attempts by people with great zeal to do things that other folks say can't be done. Most of them go nowhere, but occasionally something ends up changing the world. If our current societal avoidance of risk had always existed, whoever discovered that fire could be used to warm and feed us would definitely NOT have been insurable - and might have been banned from the clan for being crazy and dangerous.

I hope your experiment succeeds, or at least that you don't cause yourself future grief. Keep posting your results so we know how you're doing.

Jen

[ecure]

hoping4cure is doing his experimental treatment under medical supervision with a medical drug off-label .. One doctor follows him .
He's not crazy to do it without any medical supervision..

He just choose an experimental treatment in a lucid way and informed decision.

I knew some patients are forced by their doctors to accept an experimental treatment or to join a FDA- approved trial.
I knew one person who even said to his doctor a lot of severe side effects are observed with this experimental compound in trial.
Doctor forced her to accept the trial.. : He told her no other option is available to her condition.. Finally, she accepted.. She ended up in emmergency room and stayed 1 month at hospital. Finally other options are available: Her doctor offered other compounds after she went out of hospital....
It was a big lie to push pressure on her for accept trial.

It happens more often than you think..

I condemn this practice. If one person is lucid like hoping4cure and accept an experimental treatment without any pressure or manipulation.. It's totally legitimate. It should be accepted.. We should not attack hoping4cure.. We live in free world.


Some people will die from experimental compounds
but it happens the people will die from fda-approved compounds too.


I met one researcher she gave me her opinion about the guinea pig(humans).

I said to her: why are they are testing the new compounds in family of ANTI-TNF ? We already know anti-TNF(Dr faustman's approach is contrary: PRO-TNF or Immune boosting) have severe side-effects. Even if the new compounds ANTI-TNF have a short history with several severe side-effects, FDA approved a lot of trials with the compounds in family of Anti-TNF. Even some ANTI-TNF are currently approved to treat certain diseases.

So she answered me : yes , a lot of severe side effects . It's true.. but for the sake of medical evolution we need some volunteers to risk their health..

[Tribbles]

I said to her: why are they are testing the new compounds in family of ANTI-TNF ? We already know anti-TNF(Dr faustman's approach is contrary: PRO-TNF or Immune boosting) have severe side-effects. Even if the new compounds ANTI-TNF have a short history with several severe side-effects, FDA approved a lot of trials with the compounds in family of Anti-TNF. Even some ANTI-TNF are currently approved to treat certain diseases.

So she answered me : yes , a lot of severe side effects . It's true.. but for the sake of medical evolution we need some volunteers to risk their health..

I don't like the idea of immuno-suppressants as a way of treating diabetes unless they can very specific (which is what that area of research is trying to do) however it is a perfectly valid subject. If you could block just the immune response that is killing the beta cells you would be getting somewhere. The down side is you would have to take the drug regularly. It's attacking the same problem Faustman does but from the opposite direction.

I have no problem with people risking their health for medical research provided there is informed consent. I have done it myself in the past and in the right circumstances would do it again. When they trialed it insulin would have been a horribly risky drug but where would we be today without the people who were prepared to risk their health to try it?

[ecure]

Tribbles: I said: If one person is lucid like hoping4cure and accept an experimental treatment without any pressure or manipulation.. It's totally legitimate. It should be accepted..
What I said too : A lot of people have pressure or manipulation to accept a trial or experimental treatment. It's reality not acceptable...

If they would be purely honest about the side-effects of ANTI-TNF , it would be very hard to find participants...

ANTI-TNF are already approved to treat other auto-immunes and they put the life of people at risk. It's still approved by FDA.

The first trials of insulin was uncertain and risky .. But it's different we have done a lot of trial with ANTI-TNF and the mechanisms behind anti-TNF are clearly understood and the severe side-effects..

Why would you shutdown your entire immune system to treat a disease? It's too much risky but if you read litterature you will understand it.. I gave you one example of one researcher who invented one anti-tnf.. He's researcher and doctor.. It doesn't stop him to force and manipulate her patient to accept a trial...

DR Faustman's better approach. She boosts immune system . PRO-TNF
ANTI-TNF : It weakens immune response.. Your immune system is more susceptible to be attacked..

The risks are far less risky to boost immune response
than lower immune response.


Moreover, Dr Faustmant uses a vacinne with a long history of safety.. Over 1 billions of doses..

Can you find any anti-TNF compound with an history comparable ?

[ant hill]

I just got it, 5 vials of the stuff. Still cold. Will take the first one tomorrow after work.

I can barely contain my glee...must go to the gym now. I've been feeling intensely athletic the past two days, due to all the GABA pills I've been taking too in prep for this. I'll be taking 4-6 750mg GABA tablets a day, I have a ton of the stuff. If it works anything like how it stimulates my muscle tone on the pancreas, who knows...

Well it's been 2+ weeks since you have your viles, Any improvements in BG control??

[Hoping4Cure]

Well my meter says my average went UP from 8.8 to 9.1, but the variance went down from 3.5 to 3.1, but I just noticed, as prolific as my metering is, (april 13th - to -27th, when I took the first shots), I had 111 sugar readings in that time, but in the two weeks from the 28th to may 11th, I only had 18.

Which is wierd because I did re-sync my meter's internal clock, and now half of my sugars are on the correct dates but the wrong times (the time of day was wrong so I fixed it), but I inadvertently changed the date to 2025. It's not the hugest deal, 18 points in one "chunk" is still statistically valid, and I was sick a bit (not badly) the first week after injection, but that could have been the cold going around the office too messing with my blood sugars. I didn't work out much in this time compared to normal, so it's hard to tell.

I will see what I can do with an export and a search replace of 2025 -> 2012 and then re-import, maybe all of a sudden I'll get the missing data points. This is really annoying that I have to do that. Luckily I caught it early on like this, because I am planning on taking two more injections tonight. My mom is administering them.

[Hoping4Cure]

My plan from now on is to take one reading at 8am, 10am, 12pm, 2pm, 4pm, 6pm, 8pm, and 10pm, or at close to those markers as possible.

There is NO way I've only taken one reading per day, I wouldn't really trust the results without the extra data, but so far I'd say it's not showing any meaningful change to my sugars. I'll get my meter settings sorted out, and will post my sugar graphs when I get them sorted. I would have liked to try some adjuvants too this time, but sadly no local healthfood stored carry either lactoferrin or alum (and pharmacies neither), so it looks like I have to order those online and use them next time.

For tonight I will just try 2x 0.1ml but double concentration from last time, so a total of 4 adult doses. Hopefully my c-peptide RX will arrive shortly so I can do that, then wait for the results of that. When I took victoza the results were immediately apparent within two or three days, visually in the blood sugar graphs, which I was hoping to see as a result of this...ugh. okay time to hack some .csv files now.

[Hoping4Cure]

Note 1: I've taken more BCG, /aside my mom is a pro. yay for moms. I took nearly the entire vial's worth, but only diluted 1/2 the saline. I'm starting to think this was a mistake. Too much liquid injected at once hurts more, so in the aim of increasing the concentration like I planned, didn't account for the fact that perhaps a given quantity of BCG needs a certain amount of saline, period, to be reconstituted. I say this now because either my mom's injection in my shoulder was so good as to not have hardly any noticeable bump post injection like I noticed with the first two times, and because I tried putting in 0.15ml to finish off the vial completely, and had to stop after 0.05ml because it was bulging and hurting me. Which was wierd because that was over two hours later, before the stuff went inert, so I decided to take a bit more.

Note 2 : Now that I've gotten my meter data fixed (well, for the most part...the 2025 data was old...I think. I have two meters and one of them was completely off date-wise, switching back and forth in the profile I had to compare serial numbers on my main and backup meters to see which was responsible for the Back to the Future data), I am almost embarrassed to say how bad my sugars have been lately. Not only have I not been working out in the past two weeks, but working overtime and splurging a bit, diet-wise, not to mention forcing myself to get out more and enjoying life a bit (hot dates at fancy restaurants, power lunches with my co-workers, hitting up clubs, drinking...), which as we all know are terrible for blood sugars. To be intellectually honest with both myself and you all reading this out there, I am forced to have to admit that perhaps the mild side-effects of the BCG have had a hand in this deterioration, or perhaps it's inherently made my condition worse than it was, regardless...I am not cured or even see any improvement in my sugars. The C-peptide readings should be the final arbiter of this.

Note 3: I am worried that BCG (I will report again tomorrow if my arms are screaming in pain from 8x normal adult dose overdose which I took tonight), has no or highly diminished effect unless taken months later. Kind of like repeated stimuli of the same type illicit lower reactions each time. Anyway, I intend to follow through with this "test" with at least one more vial, next time with all the adjuvants I can get my hands on. Depending on the redness of my injection spots tomorrow, well-- I'm not sure what no redness at all would prove. Am I used to BCG now and my body doesn't react badly to it? Or did not putting in the entire 1.0ml, but only 0.5ml of saline for reconstitution ruin the mix? Like do the bacteria need exactly so much diluant to operate effectively, or is it a variable thing where the concentration can be controlled by the ratio of the dry BCG weight to the volume of diluant. Questions, questions...I don't have answers to yet.

In the next two weeks, I will get back in the heavy exercise regimen and cool it with the drinking and living large, so I can try to get my sugars back in control. Hopefully I won't get sick from 8 adult doses...I guess I'll find out tomorrow. If I don't, well it won't really matter probably, I'm starting to think this is doomed and not going to work. I hope y'all can spare me the premature "see I told you so" until I get c-peptide data.

I will be spending a lot of time reading other forums on better foods to eat other than just naive low-carbing which I seem to have a hard time with. I often have no energy to hit up the gym, which is sort of a spiral. Just to be clear, I'm not giving up, but regardless of the outcome I'm still glad I did this. The bigger redness from one of my first injections is nearly back to normal and I think it won't look any worse than any of the other millions of random scars that a rambunctious kid would end up with as an adult. Live and learn, I guess.

[Hoping4Cure]

Only very mild redness on my arms this morning, despite taking 0.4ml total. I have three theories why this might be, but I'm curious. Does anyone have any experience with this? Is it expected that subsequent reactions to a vaccine are much more mild than the first time? If I need exponentially more BCG to get the same effect next time, this may never work. Or it's working now the way it's supposed to, and I'm lucky that arms will be thanking me that the punishment is gradually less severe.

I could try to post some pictures later. Anyway, since there's no major change to my sugars, either this thing doesn't work at all, it needs way more BCG to do anything, or I don't have the right antibodies that TNF would kill, or it is working but will take a long time to allow my islets to regrow. I guess only time will tell for that last one. The bloodwork is the next step.

After that, the next time I take BCG will be with massive amounts of adjuvants, and 100% of the vial (10 adult doses). I'm fairly confident now I can take the whole thing next time, considering the mildness of the skin reaction this time after taking 80%. Also if anyone has any ideas whether using 0.5ml of saline instead of 1.0ml of saline might be a bad idea (to double the concentration)...maybe there wasn't enough "fuel" to activate all the BCG with just half. I've way surpassed what the reading material I have already has hinted to me. The instructions with my meds say to follow the instructions precisely, with regards to injection technique and reconstitution, so maybe there is a logical reason (i.e. it's my fault), that the reaction this time was so mild.

Any ideas?

[ant hill]

After that, the next time I take BCG will be with massive amounts of adjuvants, and 100% of the vial (10 adult doses). I'm fairly confident now I can take the whole thing next time

Clearly this is not working Hoping4Cure. Why would you take 10 times of this said drug?? Your BG's are not getting any better are they? AND for the money is not justified to benefit to your health.

I've way surpassed what the reading material I have already has hinted to me. The instructions with my meds say to follow the instructions precisely, with regards to injection technique and reconstitution, so maybe there is a logical reason (i.e. it's my fault), that the reaction this time was so mild.

Any ideas?

First of all, Thankyou for sharing your experience in using the BCG and I am sorry this is not what you expected. As for me, I see that Denise Faustman is doing a wonderful job in her quest to cure Diabetes. This is could also may lead to other discoveries to not just only Diabetes but to other findings in other diseases.
I also don't like this disease as I see wild swings in BG's as we go about of our lives and get the best out of something that works and that's Insulin!!!
Also, I look at foods in what it will do for me, Not what it tastes like. There's the odd beer too.

[Hoping4Cure]

I'm sticking to it till the bitter end, because I think it's a little premature to quit after only two weeks, and before I've gotten any c-peptide results back.

This video interview shows that insulin took about 5 months to show up in the phase I trial patients, not only that but there's an increase of bad t-cells at the beginning of the treatment. Which could help explain why I feel sort of, pretty awful. I mean today I'm better and almost 100%, so much so that I will go out drinking with my college buddies, but yesterday I felt weedy and wet and utter bollocks. My two new red spots are there now, quite visible, but only just rosy, diffuse areas. I have lactoferrin arriving in the mail for my next booster dose. I want to take all of this before I go on vacation in july, so if I stick to every two weeks I should be able to get through the other 3 vials I have left.

[Gigem99]

I'm sticking to it till the bitter end, because I think it's a little premature to quit after only two weeks, and before I've gotten any c-peptide results back.

This video interview shows that insulin took about 5 months to show up in the phase I trial patients, not only that but there's an increase of bad t-cells at the beginning of the treatment. .....

I don't blame you for going ahead. Once again, I think it's pretty weird, but I've been fascinated following your progress.

I really grateful for the link to the interview with Dr. Faustman. I thought I'd seen all the interviews available online, but I'd never seen that one. It was really aggravating not hearing the questions, though. One of the things I thought was really interesting was when she explained that they didn't have a way to mail in the blood. That seems really weird to me, but I guess it explains why I couldn't have blood drawn back here in CO and shipped to her the last time.

My next appointment with her is in Oct., but it's increasingly looking like I'm not going to be able to afford to go. It really makes me sad, because I have so much time, energy and expense wrapped up in this trial. I think I am one of the first patients to get into the phase II trial, and it seems a shame to have to drop out, but I didn't know when I started that I'd be moving back to CO - I lived outside of Boston when I enrolled in the trial.

[Hoping4Cure]

Tom, don't worry, if it works for me I'll mail you some. Or send you a link to get it on your own. If I were you, or anyone else out there, I'd wait until I get some results. However, I don't even know if I produce GAD antibodies or have that A2 protein you mentioned they look for, so even if it doesn't work for me it may work for others out there. Hopefully I'll see on my next blood work. Still nothing in the mail yet my doctor friend is probably pretty busy with his practice to focus 100% of his time to send me an RX. Should be here any day.

My shoulders, despite having less concentrated and intense hue of red, actually hurt pretty bad. A tiny girl at my office slapped my shoulder today at work and it hurt quite a bit. Looking at it, I'm sure my body is fighting it off at 100%, despite the three pints I just drank to wash down our bangalore curries

[Faustina]

Hi Hoping... just wondering about the location of the Tb shots and the pus that you have described. Do you think the shots will leave a scar? I can't imagine what the pus must look like. Can you give the shots anywhere else like the buttocks?? Also you mentioned getting some alum... what is that? As for the concentration of the vials... are there any instructions in the boxes? Maybe a nurse who gives the shots would know. Sorry for so many questions... just curious.

Tom, sorry you will have to drop out of Phase 2, did Faustman have you sign a lot of legal paperwork for the study?