Coimbra Vitamin D Protocol for PANS?

[DreamingPanda]

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?

[jan251]

Vitamin D supplementation is controversial.  It is theorized that supplementation further depletes magnesium in order to process it.

If you try it, please report back!!!!

[bobh]

There are some cases of PANS patients reporting increased symptoms with vitamin D (possibly for the reason jan251 mentions, I am not sure).  So you might want to research that, and then even so, start low and go slow.  I think your skepticism is good, but you also have good counter points for giving it a try.  By the way, I searched Coimbra in this group, and got only your post as a hit, so looks like no-one has reported on it here to date.

I am curious - do feel that you got lyme (read that in another post of yours) at the beginning of your (undiagnosed) PANS, or do you think you picked that up later and it just made it all worse?  I know you only tested for it 2 years ago, but do you (or your LLMD) think you've had it for a very long time?  How is the lyme battle going, are you winning?

[DreamingPanda]

On 12/4/2017 at 5:24 PM, bobh said:

There are some cases of PANS patients reporting increased symptoms with vitamin D (possibly for the reason jan251 mentions, I am not sure).  So you might want to research that, and then even so, start low and go slow.  I think your skepticism is good, but you also have good counter points for giving it a try.  By the way, I searched Coimbra in this group, and got only your post as a hit, so looks like no-one has reported on it here to date.

I am curious - do feel that you got lyme (read that in another post of yours) at the beginning of your (undiagnosed) PANS, or do you think you picked that up later and it just made it all worse?  I know you only tested for it 2 years ago, but do you (or your LLMD) think you've had it for a very long time?  How is the lyme battle going, are you winning?

Thanks for the information!  Sorry for taking so long to respond.  I've been caught up in college graduation and the holidays.

I did the initial bloodwork that they requested, and it turned out that my vitamin D levels were way too high just from supplementing at 10,000 IU.  Coimbra probably would have put me on 50,000 IU/day, so I'm not going to try it after all.  At least not right now. 

After 9 weeks of IV steroids, this latest PANS relapse has come to an end, and I'm back to baseline.  It turned me around so much that I went from failing assignments to getting all A's!  I seem to have turned a corner, so my PANS doc has me in a wait and see phase right now.  I'm still treating Lyme and co-infections, but yes, I'm winning!

My LLMD thinks I've had Lyme the entire time, but I'm not sure.  The initial illness that triggered my PANS in 2006 consisted of fatigue, joint pain, and insomnia, which sounds a lot like Lyme.  All that went away after a few months.  We did the CDC tests and of course they were negative, but I grew up in the woods and have been bitten by ticks more times than I can remember.  My PANS doc of course thinks the initial illness was Rheumatic Fever--especially since I later developed severe chorea.  Who knows?

I definitely was infected (or reinfected) in 2016 when I had a flu-like illness followed by pericarditis and POTS... And positive Igenex.  The 2014 flare was from EBV and Strep.

[bobh]

Great that you turned a corner - congrats!