24yo w/ PANDAS - need help!

[TSH_73]

Hi everyone, I am almost 25 and just got diagnosed with PANDAS a couple months ago. When I was six, I had Sydenham’s chorea and was put on prophylactic penicillin, which I continued taking until age 22. For the past few years I have been having increasingly bad symptoms and finally just found out that I have also had PANDAS the entire time. I also scored very high on the Cunningham Panel. Unfortunately, IV steroids made me worse, and the treatment recommended to me is rituximab, which I do not want to do. I feel like I need to figure out the root cause of why I am having an autoimmune problem.

My symptoms are the following:

-OCD

-Mood crashes every few weeks related to OCD

-Tics

-Sleep disturbances

-Social anxiety

-Eye problems: My eyes and eyelids start to feel like they are shaking if I try to look at someone for a few seconds straight while trying to concentrate on what they are saying (has anyone else had this??); Occasional throbbing pain above and behind my eyes or pain when moving my eyes; Dilating pupils

-Digestive problems

-Acid reflux

-Achy muscles sometimes

-TMJ

-Plaque on teeth

-Some numbness in arms and legs when lying down at times

Things I have tried:

-Bactrim (no effect in first week)

-Candex (same)

-Air purifier for mold

-Probiotics

-Infrared sauna

I am doing 23andMe and am thinking of doing tests for heavy metals, mold, other autoimmune diseases, gut testing, and maybe others.

If anyone has any ideas or thoughts, I would be very appreciative. I am pretty desperate to get better 😑

Any recommendations for doctors in the Northern Virginia area would also be helpful.

[MomWithOCDSon]

tsh_73 --

Sorry for what you're going through.  Unfortunately, yes, I think many of us -- and many of our kids -- were dealing with PANDAs for years before a diagnosis of such, and the impacts are wide-ranging and probably unnecessarily prolonged due to a lack of recognition in the general medical community.  It sucks.

As for the most proximate and PANDAs-literate doctor to you, I imagine Dr. Latimer (DC area, I believe) is probably it.  It will take a while to get an appointment, however, and I don't know what her insurance acceptance situation is currently.  Many professionals in the field have gone the route of private pay only, leaving the insurance fight for reimbursement solely in the hands of the patients; they can't afford the manpower or the time required to fight with the insurance companies over treatment protocols, etc., I expect.

I commend you for seeking the root and basis of your auto-immune issues, and genetic testing will likely give you some clues.  Unfortunately, though, the auto-immune cascade that can lead to PANDAs and other "rare" conditions is still emerging science, and even if you or a medical professional are able to identify some mutations that may underlie your condition, treatment is still likely to be something of a trial and error process.  If you can find an integrative physician in your area, that might be your best bet as a PANDAS specialist like Dr. Latimer is unlikely to have sufficient availability to walk with you through all of the trials and tweaks.  I know many people have had success with these underlying issues by closely examining and addressing the methylation cycle.  Certain gene mutations make the cycle inefficient and/or lopsided, and that, in turn, can impact the way your body processes various substances, balances neurotransmitters, etc.  I only know enough about it to be dangerous rather than helpful, but an integrative physician should be enormously helpful in this regard, and you can search this forum with key words like "methylation" and garner a lot of information.

In the meantime, may I ask, what is your concern about trying the rituximab and see how your body/brain responds?  Afraid of the drug itself, or afraid it may mask the symptoms you're attempting to ferret out the root cause of?  I'll just offer that, in our experience, this is something of a long, twisty road, and if you are at a point where you're having trouble functioning in the world, dismissing options that may help you be more functional, if not "fixed," may make your road tougher.  It's a very personal decision and I respect your right to make the one that feels right to you.  At the same time, I have seen with my own eyes the benefit that some medications gave my DS while we fought the PANDAs and returned his immune system back to a healthy status.

Finally, I'll just add that your dialated pupils, sleep disturbances, mood crashes and reflux could be histamine related, histamine being a necessary neurotransmitter, but in a dysfunctional system, over-produced or over-absorbed to a level that can result in some of these symptoms.  This is another piece of the methylation cycle that treatment can help correct, though, again, if you're looking for some temporary relief, a histamine receptor (H2) antagonist like Pepcid may help short term.

Wishing you all the best! 

Edited October 10, 2018 by MomWithOCDSon

[TSH_73]

MomWithOCDSon -- thank you so much for your reply! I actually did go to Dr. Latimer, who diagnosed me with PANDAS. My concern with the rituximab is mostly that I just have a feeling that it won't work for some reason. But I am keeping it in mind as an option. I will definitely try to find an integrative physician and look into methylation. That is really interesting about the histamine - I didn't realize that could all be related.

[4Nikki]

Hi, sorry you have to go through the symptoms. My DD had steroid blast treatments each time her symptoms got worse but after she completed the treatments she had big improvements. The treatments lasted from 6 to 8 months. We’ve heard that the tonsils can hide strep and some have them removed.  In DD’s case her autoimmune system suffers from having mitochondrial cell deficiency. She takes supplements to support her mitochondrial cells. It helps to make her symptoms manageable.

[TSH_73]

Hi 4Nikki, thanks for the reply - I will look into all that.