Faustman Lab at Mass General Newsletter

[Hoping4Cure]

Not sure if I posted this already....

pancreas_function.jpg

[Gigem99]

.....Whereas the article mentions :

"The standard C-peptide assays have lower limits of detection of 15 pmol/L and 33.1 pmol/L, respectively, whereas the ultrasensitive assay has a lower limit of detection of 1.5 pmol/L with inter- and intra-assay coefficients of variation of 5.5 and 3.8% at 37 pmol/L.".....
....

Once again, thanks for the fascinating info....I'm going to email Dr. Faustman's lab and see if Nick (or anybody there) will tell me what they measured my C-peptide at. I know my endo did a C-peptide test on me a few years ago, and it came in at less than .1. I just 'celebrated' my 27th d-anniversary with type 1, and I've been under the impression that I produce no C-peptide at all since I saw my endo's lab report.

BTW, I'm curious (as I"m sure many who have been following this thread) - have you noticed any effect from the BCG yet?

[Tribbles]

I am not sure where to find it now but the islet transplant program did a lot of research into beta cells and Type 1 for obvious reasons (they need a baseline in the treatment). The found a surprising number of Type 1s still had beta cell function even decades later. From memory I think it was 15% had 10% or greater function. There are theories that the auto immune cause may vary in the same way that the genetic cause varies in Type 2. In other words a particular cure may work for a subset of Type 1s but not another.

[Hoping4Cure]

" have you noticed any effect from the BCG yet?"

Hard to tell, I was under the weather at first (first month) and didn't have the energy/wherewithal to work out (plus I was stuck at work doing insane overtime), so my sugars actually got worse at first...now they're back to being much better. Yesterday I had a nasty hypo and it stabilized on its own, but this could be the result of just more supper digesting releasing energy and balanced it out. Who knows. If BCG is working, I have no idea yet. My blood sugar averages and graphs don't really show any evidence, either way. I was really dismayed at first by the negative impact on my blood sugars, but that's gone now. I am going to get some real data and hopefully get lots of data points from the new test kit (if I can get it). If I can't get it myself, I will definitely ask my dr friend in europe to get it for me (it's a german company), and we can do some tests in his office, or he can just ship it back to me. If I do see my c-peptides going up, but only by a tiny amount, then I'll go back on the BCG in earnest and possibly take it intravenously. But I want to see evidence that I have *some* c-peptides in my blood, first, before going any further. Also I've been back on 0.6 Victoza and feel pretty good on that. There are indications in some of the pdfs that that can also stimulate beta-cell growth, whether by increasing the mass of existing cells or promoting new cell development. (neogenesis I think it's called). I have a wealth of full PDFs from various sources on these topics...

Make sense to you guys/gals?

Tribbles : Exactly. BCG might work for somebody else and not me. I don't know...if my beta cells were all already gone, would there be any GAD or insulin antibodies to detect? My impression, or gut feeling on this, is no, because why would your body produce t-cells to attack a target that isn't there ? (beta cells). Lots of unknowns here.

[Hoping4Cure]

Got all the relevant blood work done at the hospital. Now I wait for the results...

Haven't received a response from the ultra-sensitive assay company yet.

[Hoping4Cure]

The Mercodia test kit is a bit under $400 USD, but that's for 40 tests. Ten bucks a test...not bad. Certainly being able to test myself once a week would be great...that would either push me to up the dosages or just give it up and try something else. Either way, it'll be useful, whether for BCG or another therapy entirely.

This is good news.

[Tribbles]

Tribbles : Exactly. BCG might work for somebody else and not me. I don't know...if my beta cells were all already gone, would there be any GAD or insulin antibodies to detect? My impression, or gut feeling on this, is no, because why would your body produce t-cells to attack a target that isn't there ? (beta cells). Lots of unknowns here.

You will still continue to make beta cells and the T Cells will continue to kill them. The problem is that it reaches a point where the turnover is so low it's difficult to detect. If you could suppress the T Cell activity the beta cells would regrow.There was a recent trial where they nuked the T cells, dumped the patients own blood stem cells back to replace the damage done, and put the patient on immuno-suppressants. The people in the study averages 1.5 years without insulin, one manages 3.5 years. It's not clear if you need the drugs permanently, or if it's only while the stems cells recover the beta cells.

[Hoping4Cure]

Is that the one from Japan with the reprogramming of the immune system? very promising stuff. Immune suppressants (lysofillin?) that stop the gad or insulin antibodies were another idea from DeusX

I did the anti-GAD test on my last blood work, as well as another dozen different types of tests. I will get my results within a few weeks I guess, and when I return at the end of july I'll contact the Mercodia office in North Carolina distrib center for one of their test kits. They're very friendly / supportive of what I'm doing, especially if it ends up helping Dr Faustman, who is working closely with them apparently. The sales rep I spoke to had only just spoken to Dr Faustman the day before I emailed about ordering the test kit.

I'm glad the cost is pretty low per test, but now I have to find a friend in pharma who can help with ELISA protocol (or technique) for testing blood samples in a clinical lab setting. It's some kind of methodology but there are special instructions they are willing to provide to the technicians running the test. I'll do the first time with assistance from a pro, then learn from them so I can do it subsequently on my own, once a week, say.

[Hoping4Cure]

So, I injected an entire vial of BCG into my veins. A little at first (0.1ml), then two bigger shots. I couldn't do it all at once, or my vein would have popped. It's hard sometimes to release the belt I tied around my upper arm whilst still holding on the needle and avoiding at all costs puncturing somewhere wrong. Thankfully, I did it well and my arm looks fine. I read some PDFs on doctors in the 70s injecting BCG into leukemia patients and getting good results...because there is no way I'm going to inject into my upper arms intradermally any more. The scars are too puss-filled and I don't want any more. Apparently, another way to avoid BCG scars is to inject subdermally into the front of the thigh. But I wanted a full dose. Tuesday I get my first c-peptides back and all the other stuff too...who knows.

Anyway, I've been in contact with the mercodia people about getting their assays, but according to an old high school buddy of mine who works for big pharma in a research lab and is familiar with ELISA, you need a whack load of equipment that's in the thousands, as well as certification from the government for lab standards or they will shut you down. Of course, if I can rent out a lab for a day to perform some tests, I will do that. I even have two people willing to help me and my business validate my progress with BCG and other drugs (I intend to keep experimenting on myself for as long as it takes to get results...maybe not BCG, maybe something else...immunosuppressants perhaps)

Gonna lie down now...if I don't post again, it's cuz I'm in the hospital with a nasty infection. (or dead? nah...I doubt it)

[BriOnH]

Dude wtf?

I don't mean to be a jerk, but injecting BCG I think has impaired your judgement.

You need to stop this now. You aren't helping medicine, and you SURELY aren't helping yourself.

I am scared for your life. If you think being diabetic is bad; I can assure you there are worse fates and the way you are going down this current path I am greatly afraid you will find such fates.

[PinkRose]

You will still continue to make beta cells and the T Cells will continue to kill them. The problem is that it reaches a point where the turnover is so low it's difficult to detect. If you could suppress the T Cell activity the beta cells would regrow.There was a recent trial where they nuked the T cells, dumped the patients own blood stem cells back to replace the damage done, and put the patient on immuno-suppressants. The people in the study averages 1.5 years without insulin, one manages 3.5 years. It's not clear if you need the drugs permanently, or if it's only while the stems cells recover the beta cells.

Something just occurred to me that seems to put holes in this theory of T Cells always programmed to kill off regenerating beta cells ... Why don't T1s who've had total pancreas transplants become diabetic again? I know of at least 1 person who's T1 but since having a pancreas transplant a few years ago, continues to produce his own insulin & enjoys normal BGs with no injected insulin whatsoever. If the killer T cells were always lurking around ready to pounce on beta cells, surely they would have accomplished their rotten deed by now?

Seems that this immune programming seems to go out the window with the old pancreas & doesn't replicate with the new pancreas. Does anyone have any thoughts on this? I wonder whether Faustman has accounted for this phenomenon in her research ...

[Grunch]

I imagine the person you know takes immunosuppressants, so the immune system has a harder time destroying the cells, but they will eventually be destroyed. The new pancreas will not continue producing insulin forever.

The immune system attacks any transplanted organ, not just in people with an autoimmune condition.

[Alex807]

Dear Hoping4Cure,


I want to say first of all, Thank you for your hard work and I hope you will be able to compl
ete your research successfully.
I also have to say that you have allot of courage to take the BCG in your Veins.

Question: what were your side effects? Fever? After a few hours..
Did it leave a mark this time on your arm?

do you know what was the dosis that Dr. Faustman gave to the NOD mice. ?
Also do you know her the time waiting between each shot? A week .. a few days ..?

Thank you.

[Hoping4Cure]

okay, I've decided to write about my experiences. I suffered a TERRIBLE day on saturday, the morning after injecting the entire 0.75 mg vial, with 1.0ml of diluant. I injected it into my right forearm in three shots, to mimimize the risk of it exploding out of my vein and ruin my forearm with the same type of reaction as in my upper arms (which are now, mostly healed by the way. They will be probably undetectable within a few months more, or at least minuscule enough to pass off as just beauty marks or something. Ironically, the biggest doses I did intradermally two-three months ago, are the least visible and will probably be completely invisible (though the puss was absolutely horrid, which made me giggle with glee like a kid watching an episode of Fringe)

. ..anyway, back to the intravenous. So there is a small reaction at the injection sites, but it doesn't hurt. What DID hurt, insanely badly, was the > 100 degree fever I had the entire next day. Sadly, I did not have a thermometer handy and my mom forgot to bring it when she showed up to take care of me and make me soup. I was too tired / weak to even cross the street. They said I was burning hotter than the fire of a thousand suns (my own words...a little melodramatic perhaps, but it's how I felt). But the worst part, is that I had just re-upped my dose of Victoza back to 1.8, to try and stimulate my beta cell growth, and that was the clincher that made me wonder if my head was going to explode. I mean, I puked so hard and with such force my neighbours knocked on my door to ask if I was okay. I must have taken dozens of baths all day and all night for 48 hours, hot then cold, just to feel normal for one second. However by the second day (I had stopped taking the victoza), my generalized aches from the flu at least weren't compounded by the intense migraines from injecting the digestive enzymes of the Gila Monster (no joke, that's what Victoza is made from).

So, moral of the story is this : did it hurt? Not really. I've injected stuff into my veins before (don't ask), and it does not scare me. I was a bit afraid afterward of you know, dying of a 103 fever since I expressly didn't want to rush to the hospital, knowing they'd probably freak out and put me on all sorts of antibiotics and whatnot, but I feel fine now. Seriously. Had it not been for the Victoza, I would have had a much better go at it. Also, I should have had my mom come over much earlier. My sister was p*ssed at me, I could hear her screaming on the phone. Oh well, it's my life, I'm 34, it's my prerogative to risk my life when there is so much to be gained (potentially). Tomorrow morning I get back the regular c-peptide results (I hope), and my other antibody readings. Then if I see any number whatsoever (unlikely, I know), I'll have to track down my 1 year old blood work from the transplant specialists who did a thourough investigation into my case.

In short, the fever was pretty intense, and the pain was pretty bad, especially the neck and headaches and lower back pain...having someone to massage your neck really helps. That said, my mom is completely on board with this. She was a little frightened at first but I showed her some snippets of PDFs of intravenous BCG injections with MUCH higher doses, taken weekly for terminaly ill cancer patients (like ~200MG per week, over 250 times what I took). But I won't take any more of this stuff, in any way (despite having two vials left), until I see some positive results.

why did I do this, knowing I'd get back some results on tuesday? I have my own reasons, which may seem shallow to some of you, but I'm determined to cure myself one way or another and I'm not waiting for anyone to give me permission, or validate my life choices, or anything like that. I don't need a shrink, I need my life back. I intend to get it.

[Hoping4Cure]

Dear Hoping4Cure,


I want to say first of all, Thank you for your hard work and I hope you will be able to compl
ete your research successfully.
I also have to say that you have allot of courage to take the BCG in your Veins.

Question: what were your side effects? Fever? After a few hours..
Did it leave a mark this time on your arm?

do you know what was the dosis that Dr. Faustman gave to the NOD mice. ?
Also do you know her the time waiting between each shot? A week .. a few days ..?

Thank you.

You're welcome. I'm purposely only answering those who are supportive, because I already paid a substantial opportunity cost : my entire long weekend was a write-off and I missed three birthday parties, a bachelor party, a national holiday, and any semblance of a relaxing time. To top it off I'm now at work doing overtime because there are show-stopper bugs to fix by the end of the week and my company is counting on me.

"Did it leave a mark this time on your arm? "

three red marks, widely diffused, probably some bcg leaked out from the bloodstream when I pulled the needles out. Unfortunately, the only way I can think of to solve it, is to use an IV drip with a single, taped in needles tip with a switch, so I can drip straight saline for a while then switch to bcg, then switch back, to make sure no bcg comes out when I pull the needle out. This is how they do it in the hospital, as I'm sure you're all aware. I did it the old fashioned way, with a belt and my own wits and guts and determination, tempered by my experience with my other BCG injections. So, there is some red, but its spread out. I think it'll be fine and go away after a while.

"do you know what was the dosis that Dr. Faustman gave to the NOD mice. ?
Also do you know her the time waiting between each shot? A week .. a few days ..? "

I think she gave the mice one shot, and other time multiple doses (the multiple ones worked better). The dose, we calculated, was on the order, equivalent to, 5 grams in human terms, adjusted for body weight. I could double check the source for this...who knows we may have made a mistake...but anyway, that's still about 6000x what I've taken so far. Maybe it's not a linear formula (I hope not...but there's reason to suspect there isn't). The mercodia people suggest to me perhaps there may be the results of the phase I coming out soon, at the start of phase II. I'm also very suspicious about this, as Mr Levy is, but whatever...time will tell.