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Old 05-27-2017, 05:26 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
Heart

I hate that you are doing so poorly! Can you remind me which drugs you're on?

The research into helper cells and how they operate in the immune system has come a long way. But they are no where near (so far) an understanding of how to help the various forms of MG. What you are discussing is "experimental MG," which has been studied by Dr. Blalock and other researchers for almost two decades with no firm results.

Th1/Th2 cells. - PubMed - NCBI

Th1 and Th2 responses: what are they? | The BMJ

You need help now. Have you seen an immunologist? I would highly recommend that. There has to be something else going on with your body that is making MG worse.

Have you had your immunoglobulins tested (i.e., IgG, IgA, IgM, IgE)?

Have you ever tried Rituximab or Low Dose Naltrexone?

You really need new eyes on your situation. And a MG expert from Mayo (such as Dr. Harper in MN). You could always email Dr. Harper and ask for his opinion. I believe his email is on their website.

Yes, the research they are doing is promising. And I applaud you for thinking of something, anything that might be making you worse! But you need more doctoring. Your quality of life doesn't sound too great. And with your MG not responding to treatments well enough, you could be in grave trouble. Not cool.

Do you have a doctor where you live who can set you up with an immunologist for evaluation? Try to find one in private practice or at a university, since HMO ones tend to deal only with allergies! They could then refer you to someone to help. You need to know how your immune system is working first (too much CD4 or CD8 or whatever). Then they can try to work out a treatment for you.

Immune profiles also change over time. So even if you had one before, it is worth looking at again. So is B12, if you haven't been checked recently! Without B12, the body doesn't make enough acetylcholine.

What else can I/we do to help?


Annie
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"Thanks for this!" says:
anon6618 (05-28-2017)