Patricia, I know quite a few people who use minocycline for autoimmune issues. It works better than doxycycline, and can often be taken in low doses for this. I have used it myself, going off for periods of time, back on when needed. It has kept my joints from degenerating, even though I get swelling when I go off for too long. You can read more about the basic protocol at http://www.roadback.org/.

It has been shown to regulate the immune system, repair cartilage, and even keep spinal cord injury patients from deterioration. If you want articles, I have a bunch on my computer, just let me know.

The thing about IL13, is that it is an effect, not a cause. All of the interleukins as well as TNF-alpha and TGF-beta 1 are just responses of the immune system to triggers. It is still not completely understood how they work in the body.

If you can find the trigger, and relieve it, then the ILs and TNFs and other immune chemistry will not be problematic. One picture of how mold can impact the immune system is shown at this http://www.survivingmold.com/docs/biotoxinpathwayritchieshoemakermd.pdf link. He isn't addressing IL13 specifically here, but it gives a simplified picture of how things can go wrong.

It is a hard call whether to try the drugs. You have to weight the possible cost/benefit ratio. How bad are his symptoms? What is the chance the drug will help? What is the chance it will harm? How soon can you expect to see benefit? How long before harm occurs?  Would he have to take it indefinitely? How many patients does the doctor have on this drug? What is her success ratio with the drug?

Hi Patricia!

I'm understanding your quandry here and it's truly hard to figure it all out, isn't it?  

As to the autoimmune markers, I'm right there with you!  We've been investigating my three children.  It looks like my daughter has dodged the bullet!!    Her labs returned with no apparent autoimmune involvement - her previous elevated thyroid T4 and T3 both came back completely NORMAL!  She was with more antibodies to her thyroid than I was and they are now all NORMAL!!  So, that's a wonderful blessing!!  She also is showing no alterations with any kind of autoimmune markers!!!  And best of all, her tryptase came back 1ng!  YIPEEEE!!

Yet my two sons are a different ballgame     Both have some autoimmune markers.  The one who is the elder of the two we have found the MC aggregates within his intestines so we have NO DOUBT that he has masto.  Yet his tryptase is 2.6ng!  He does also have some vague RA markers, but not all of them so he can't be diagnosed with RA.  He also has an elevated ANA which has improved once we put him on ketotifen.   My other son is only beginning his investigation so we've not had a colonoscopy run on him yet.  He's got a raised ANA and has thyroid dificiency and so far, no RA markers.  Yet his tryptase was higher than mine!!  His is 5.5 ng and mine is 4.6ng!!  

What my theories are, and this is what the Harvard geneticists also feel is that with my son's RA markers, it isn't that he has RA and it's triggering the masto, but that he has mastocytosis, yes, but the RA markers show where the masto is causing inflammation.  Dr. Castells had told me a little while ago that they know that MCs are involved in inflammation and the inflammatory processes, but how exactly this occurrs within mastocytosis they are not quite sure.  But in looking at my case versus my elder son's case, my markers are generalized like may younger son's and in my case the biopsies show generalized inflammation throughout my body.  And what we are seeing is that with my son, his inflammation seems to be limited to his connective tissues - but without biopsies this is only what we suspect.  

Yet, masto, although it is a cell involved in inflammation, is not considered an inflammatory disease and this may explain why I don't show any inflammatory markers, and I believe my sons don't either.  The chronic inflammation is present, but it's not an inflammatory disease per se and it behaves differently due to different mechanisms which are behind the inflammation.  

So, this could be what is happening with your husband, Patricia.  Yet here's the problem - THERE IS NO STUDY ON THE AUTOIMMUNE FACTOR!!   NOBODY knows what is going on here with us!!  NOBODY!!   So we patients and even the authorities are totally walking blind for not one study is out there to guide us!!!


Now as to this study, it's certainly interesting and I'll have to write to you about it.  In one of the studies on my and my son's immunohistochemical testing we also showed a negative c-kit!  The pathologist said he wanted to retest this to make certain for he found this HIGHLY unusual!!  

Hmmmmmmm!!   Always a mystery!!

Lisa

kristi wrote on 09/02/11 at 19:30:03:


Hi Kristi, I understand your reluctance to try Gastrocrom.  Before this I'd only known meds to make things worse because of the many side effects.  My first Zyrtec even made me devastatingly tired and unable to do anything but sleep.  I am very sensitive to meds!

What I've found though is that the side effects from the Gastrocrom were transient and not severe.  I had some insomnia at first for maybe a week and then I had cramping and diarrhea following my Gastrocrom doses for a few weeks.  Now (at about a five weeks of taking it) I don't seem to have any side effects and it's really been helping me stabilize my mast cells and allow my body to handle stresses that it normally would react very poorly to.  

I hope that helps.  If you start it and notice some side effects, I wouldn't assume they are forever side effects if I were you.  I think you'll be happy with it.

Good luck.