Adults PANDAS, autoimmunity, and/or Lyme

Hi all,

Haven’t posted in a bit because I was symptom free since the end of February. I saw my LLMD on 2/7 and based on my presentation with mostly psych and autonomic symptoms (poor tolerance to almost every oral abx after a while, anxiety, POTS, occasional depression, fatigue, yawning constantly, etc) and test results (Cleared up the Bart on Igenix, MDL all negative except a few Lyme bands, normal everything else) he believed my symptoms were PANDAS-like and put me back on the Bicillin injections.

When I first achieved remission from August 2018 to Feb 2019 it was right after I stopped treating for Bart after 8 weeks on Rifampin and Mino and switched to the bicillin shots at the beginning of July. My symptoms came back at the end of Jan 2019 as I was weening off the shots (had gone from every 7 days, to 10, to 14 and only had 2 shots left). Instead of trying to return to the weekly dosage for a few weeks, I panicked, got tested and tested positive for Bart and Babs again, and resumed oral antibiotics for the next year. I didn’t have any traditional babs symptoms but did 5 months of malarone and zith, then went to treating Bart which led to me going downhill rapidly due to poor tolerance to the meds (Bactrim, rifampin which put me in the ER twice even at a microdose, and I even became sensitive to doxy and Mino which I could take like candy previously). Finally, he put me on Dr P’s protocol of Tetra/Diflucan which worked great for 2 cycles and then I ultimately returned to the same misery.

Anyways, After 2 to 3 shots this time I was at 98% and enjoying life and the birth of my first child (except for being stuck at home due to the pandemic of course). My POTS mostly resolved too. I’ve continued to take weekly injections at the 1.2M since. My plan was to take them for a long time - LLMD said I had to be a minimum of 3 months symptom free before starting to ween. I had planned on a year at least despite the cost. However, 2 weeks ago my symptoms began to return and I’m spiralling backwards just as I am supposed to be returning to work. I can basically feel the inflammation in my brain and know all my symptoms are sourced from there.

I have a telehealth visit with my LLMD tomorrow now. He is very sharp and believes that for some patients their dysfunctional immune system post-infection will spit out Immunoglobulins to previous infections (Bart, Babs, etc) despite the fact that they may in fact be cleared. This can lead to patients testing positive for antibodies and treating for infections that may not be present when their issue could be autoimmune based. He has had great success using Bicillin LA for many patients including myself but now I am not sure what direction he will go since I’m now failing after 4 months at the maximum dose and treatment interval of 1.2M weekly. I do not believe Bart and especially Babs are in play - lyme persisters perhaps. My last MDL in Feb showed at least 1 igM band of Lyme present and possibly 2. Why would I improve so much on just shots if it were indeed active Lyme? If it is Lyme, I don’t know what drugs would be tried - I’ve used most over the course of my 3 years and 2 remissions. I haven’t done any IV abx, or Ceftin-class drugs, or DSF to this point. He mentioned at my last visit that IVIG would be an option if Bicillin failed if going by the immune dysfunction theory.

At the last visit he also did do a few immune blood tests: my total IG A, G, and M were normal but I was slightly low on 2 of the 7 items tested via Protein Electrophoresis (beta 1 globulin, gammaglonulin) which led to an impression of hypogammaglobulinemia per Quest. I never received a phone call about it and the test was done right after a year of treating via oral abx which can suppress the immune system. A year or two ago there was an IG subclass test done and I was low on one or two of those. It seems like people with true hypogammaglob have persistent respiratory infections, fever, cough, congestion, and other things which I do not have - but who knows how it may apply to lyme folks.

Anyways, I know I’m rambling, but I’m trying to think of what other treatment options or differential diagnoses are out there, any ideas? Prednisone? Hope everyone is safe and well.



Also, I would like to reiterate that Tetra/Diflucan for Bart should Be used way more often if you can’t tolerate rifampin or haven’t had success with the usual drugs.

dcd2103 said...
Is this Dr K in CT? Sounds like him

Sounds like you need IVIG

Yes it is. I love him.

When you say “sounds like you need IVIG” can you elaborate on your reasoning?

Has anyone tried IVIG?

running wild said...
It is interesting you have had such good results with Bicillin. When I first started taking Bicillin shots in late 2013, it led to about an 85% improvement in symptoms. I was at 2.4 mu twice a week. Because of kidney issues, I have not been able to go up to that dose after a relapse in 2016 following heart surgery.

Just went through all the tests you went through and only thing out of ordinary was a high kappa alpha amount in light chain. Immuglobuilns (spelling?) all good.

Just curious if you have also been tested for EBV. That seems to be the main problem to getting better for me.

I’ve been tested for pretty much everything over the past couple years. MRI’s, almost every bit of bloodwork you can imagine . My EBV was negative igM but positive igG last February. Have had other autoimmune stuff done but nothing else has come up.

Curious as to your Bicillin dosage, I’ve never heard of using a 2.4m dose and a frequency of twice a week. I wonder if that would be an option for me. The shots are extremely expensive for me since for some reason my otherwise excellent insurance doesn’t cover them (it’s 1700 for a box of 10 1.2m’s) but I’ll do whatever it takes to feel better. How long did you take the shots?

I think Bicillin is one of the best tools in the toolbox for those who have been suffering from chronic lyme - it’s as benign an antibiotic treatment as you can get and crosses the BBB.

Hey there,
So I think you can get Bicillin shots Canada for a fraction of the price.
I was also wondering if there is another neurologist lyme doctor like Dr. K in CT (unfortunately he will not see patients that have medicare and or don't live in the New England area). I am desperate and need to see a good doctor who understands lyme/Adult Pandas/AE, etc... I currently see Dr. F in NY and it has not been a experience for me. Are there any other doctors like Dr. K out there??
Thanks,
David

I live in NC. Yes I can fly. Dr. K won’t see patients that have Medicare, no exception . Dr. F has not been a good experience for me but don’t know where else to go... any other doctors like Dr K out there???

I’d like to do IVIG, bicillin, maybe rituxan. Just need to see a doctor who understands...

dkope said...
Hey there,
So I think you can get Bicillin shots Canada for a fraction of the price.
I was also wondering if there is another neurologist lyme doctor like Dr. K in CT (unfortunately he will not see patients that have medicare and or don't live in the New England area). I am desperate and need to see a good doctor who understands lyme/Adult Pandas/AE, etc... I currently see Dr. F in NY and it has not been a experience for me. Are there any other doctors like Dr. K out there??
Thanks,
David

My LLMD in Chicago (who is a functional medicine doctor) has a neurologist on staff now. She's in private practice in the West Loop. I no longer live in Chicago and I'm still doing telehealth with her. Let me know if you want her info. She comes up on www.ilads.org if you search.

She takes Blue Cross PPO, but I pay out of pocket. First appointment is I think $750 for 90 minutes, after that it's $200 for 30min. I have not interacted with the neurologist she has there. Not sure why you'd need to see a neurologist though? 4 of them misdiagnosed me before I saw my LLMD. My LLMD can order a neuroquant brain MRI.

Edit: fixed cost info

Post Edited (orbitingaround) : 5/25/2021 9:40:46 AM (GMT-6)