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Have any of you heard about the Coimbra protocol for MS and other autoimmune diseases? I'm considering trying it for PANS. https://www.coimbraprotocol.com Basically, it's extremely high doses of daily vitamin D: ~50,000 IU or more, along with some other supplements and close monitoring by a doctor. The premise is that people with autoimmune disease cannot properly absorb and make use of Vitamin D, so they need mega doses just for their bodies to be able to do what healthy people's do with more "reasonable" amounts of Vitamin D. Apparently Vitamin D boosts the immune system while suppressing autoimmunity--exactly what we PANS people need! My PANS doc was talking about moving on to Rituxan, but my LLMD says that's a bad idea with Bartonella still present. I've done multiple rounds of IVIG which haven't cured me, so that's off the table. My Lyme/co antibiotics kicked up the inflammation so much that I had a full-blown PANS relapse and have had to do weekly steroid infusions--which are only a band-aid. Basically, Vitamin D seems to be my best option at this point while I continue to treat Lyme/co. Unlike Rituxan, Vitamin D is supposed to boost the immune system and probably help me fight off the infections while knocking down the autoimmunity. I've never heard of anyone doing this protocol for PANS, but it's supposed to have 95% success rate for putting people with MS into remission (another neurological autoimmune disease). I'm always skeptical of anything that claims as much, but Dr. Coimbra isn't trying to sell anyone anything, and he lets other doctors come train with him free-of charge. I'm reassured that it doesn't seem like he's trying to take advantage of anyone. And there are thousands of people around the world who have had success with this for MS, RA, Crohn's, Sjogren's, and other autoimmune diseases. What do you think? Have you heard of this protocol before? Would you try it?
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Searching through the archives of the forum, it seems that many, many of you have reported that Vitamin D causes issues/backsliding for your kids. Tell me about your experiences: Did anyone stick with it and eventually see a good result? Did ramping up the dosage slowly help? Did anyone have a good experience from the get-go? Was there a combination of vitamins that worked to mellow the crazy? Did you find another way to get your child's levels up? Backstory: My kid came down with PANDAS in October of 2013 and is mostly recovering. (I wrote about his story a bit here.) We recently added Vayarin to his regimen of fish oil, 5HTP, vitamin c and probiotics. Adding Vayarin seemed to make a HUGE difference. The past two weeks or so have been really great--normal, even. His doctor recently tested his vitamin D levels and said they were low. (28 on a scale of 33-100, but many folks will say you are really shooting for around 50.) He recommended we supplement with 1,000 IU a day but...oh my. This has certainly put an end to the recent good run we were having. Thoughts how on I can up his Vitamin D levels without ruining our family's quality of life?
