Starting IVIG for post-infectious autoimmune/Adult PANDAS tomorrow

Thanks for posting Solaris.

Please do keep us posted - we haven’t had many members who have had the IVIG Treatment.

I was given a 25g dose on Thursday and Was required to take a Benadryl and Tylenol before the infusion. The infusion took about 4 hours, and I drove myself home (though I did feel a little drowsy). I did feel like I was Spacey/high that evening, but it very likely could be from the Benadryl and the fact that I take clonazepam and Zyrtec which all can increase each other’s effects.

I haven’t experienced any significant side effects except a dull headache yesterday and today (4-5 days post infusion). My LLMD told me that other than a possible improvement in energy that I won’t notice any benefits until at least the 2nd dose. I’m continuing with my Bicillin shots with no changes.

In 3-4 weeks I will go for Dose #2 which is 30g. 3 weeks after that is 40g. By that time I will know if it’s effective for sure but they have said most patients do show gains from IVIG.

Hi Solaris. Thanks for posting this. Is there any way to contact you to see how your doctor got you access to IVIG. I really believe my symptoms are from adult PANDAS but it seems almost impossible to get IVIG without testing for antibodies which aren’t showing up for me. Any chance we could chat offline here?

Thanks Solaris. In the middle of starting bicillin injection now. Is that just recently been considered a first tier drug for it? I’ve only seen Dr K and this forum talk about it being used for adult pandas.

Of course.

Update:

Had infusion #2 on Friday, 30g, 4 weeks to the day after the first infusion of 25g. Pre-meds of Benadryl and Tylenol, Hydrating with Gatorade during treatment and after, and taking Benadryl as needed after pretty much makes very tolerable in terms of side effects (at least at this dose). Only other side effects were mildly elevated BP (common) and a dull headache (very common) that went away the next morning. Infusion rate of 10g/hr so took about 3 hours plus setup time, was able to drive myself home again as well and was easier this time. The fatigue and malaise post treatment (I think my clonazepam interacting with Benadryl is a heavy contributor to that) also resolved the next morning.

I continued to take Bicillin 1.2m dose every 5 days during the past 4 weeks. Gotta say I did have some improved energy levels these past 4 weeks and the only time I had the PANDAS psych stuff surface was a few days prior to infusion #2 when I exercised for a few days in a row to test my tolerance - still having trouble in that area. I’m hoping this second dose and the last one (40g) in 4 weeks will really benefit the autonomic neuropathy/POTS and exercise tolerance. Didn’t monitor it much this past month but now I will pay attention to it (I carry a pulse ox on me for work most of the time anyways!). After that, the problem becomes trying to get insurance approval for continued treatment if it continues to help. Very optimistic that IVIG is the solution, a little nervous about fighting the insurance company! I am now moving my Bicillin shots to every 6 days starting this week as well.

Side note: since it’s flu season and flu shots are important, I did ask my LLMD about how I should time my flu shot in relation to IVIG (since in some instances it can negate the immunity stimulated by the IVIG) and I’m going to get mine in 2 weeks - halfway between doses and before the larger 40g dose.

Not my area of expertise, but some of these persisters live in bio films? Maybe a biofilm buster like Serrapeptase. But you always run the risk of breaking the biofilm and ending up worse I think.

I remember Charlie55 talking about Dr Hs persister protocols, maybe dapsone and disulfiram. But those sound like harsh approaches.

One article I came across a while ago said you can use sugars like mannitol or fructose to wake them up, then kill them.

I wish the IVIG was helping, and I wish I knew more about persisters, but it does sound like you and Dr K have the right working theory

dcd2103 said...
Not my area of expertise, but some of these persisters live in bio films? Maybe a biofilm buster like Serrapeptase. But you always run the risk of breaking the biofilm and ending up worse I think.

I remember Charlie55 talking about Dr Hs persister protocols, maybe dapsone and disulfiram. But those sound like harsh approaches.

One article I came across a while ago said you can use sugars like mannitol or fructose to wake them up, then kill them.

I wish the IVIG was helping, and I wish I knew more about persisters, but it does sound like you and Dr K have the right working theory

Is serrapeptase prescription or OTC? Have you heard of people getting worse attacking biofilms? I wonder why that would be the case (other than maybe a bad herx) especially if I have Bicillin in my system which would kill any released spirochetes.

Girlie, are Xylitol and lactoferrin OTC or prescription?

Are any of these biofilm busters known to cross the BBB? That’s where my issue is when I’m having by symptoms.

Dcd, Dr K doesn’t use Disulfiram - I asked him last Friday when talking about Bicillin/persisters et. and the safety profile isn’t something he’s comfortable with. He was very bullish on azlocilin but who knows when or if that will be available for public use.

“ Girlie, are Xylitol and lactoferrin OTC or prescription? “

Nope - I bought the xylitol online and also at our local health food store.
Lactoferrin - bought it online.