Let’s talk about PANDAS (and IVIG)

So I’ve found that While I’m on the Tylenol it helps, but I get a horrific rebound effect as it wears off (mostly psych sx - anxiety depression and irritability). It’s actually quite scary. I don’t quite know what to do. Guess it’s now or never for the Prednisone.

I waited 2 weeks for my MDL kit to come in the mail only to go to quest and find out they don’t do outside lab draws anymore 😡

Dr K’s staff is allowing for some blood draws to be done in the office now (no appointments still) provided covid tests are negative - so I’ve gotta go through those hoops.

He used 1.2m on me per week

I was 185lbs at that time. Dunno why he chose that dosage for me.

If you end up getting it and insurance wont cover it let me know, found a great place to get it for cheap, like 1/10 the price

dcd2103 said...
If you end up getting it and insurance wont cover it let me know, found a great place to get it for cheap, like 1/10 the price

Dcd, are you referring to me and the IVIG?

dcd2103 said...
Oh no solaris i was referring to the bicillin.

When i tried to get it Cigna refused to pay as its an intramuscular and they wont cover those. They used the excuse that they dont like IM shots that arent being done by a dr or a nurse. W/o insurance RiteAid was trying to charge me $2000 for a box of 5.

I found a place in canada called Marks Marine Pharmacy that did it for $550 for a box of 10. All you had to do was email them a picture of the prescription and it showed up at my door in a cooler like a week later. They have like a perfect 5/5 rating i remember when i looked, great company

Oh wow, that’s an enormous savings. Do you have a link? Or you can email me, as long as they’re legit and I won’t be injecting tire slime into my glutes lol.

dcd2103 said...
https://rxcanada4less.com/

I think theyre legit, was recommended by a friend. The injectibles looked exactly like what i saw on the internet and packaging seemed legit. Customer service is very good too, its supposedly family owned and had that feel. Also like i said very good reviews, found them to be very helpful. Website is a little tacky tho lol


https://edrugsearch.com/marks-marine-pharmacy-reviews/

Thanks so much, man. I just placed an order and I’ll see if it goes through and if it does if the product is legit. Although I’m fortunate enough to afford the ridiculous price here in the states, getting it for 1/3 the cost would be a game changer.

I did some googling and it does seem like some LLMD’s use the 2.4M dose - I’ll have to ask Dr K again next time I get the chance (2.4 isn’t available from that Canadian pharmacy unfortunately). Dr K has said multiple times that you can do the 1.2 shot every 5 days if you find that the effect wears off towards the end so in the meantime I’m going to try and see if every 5 days helps me out while I wait for Immune bloodwork, MDL results, and potential IVIG.

dcd2103 said...
No prob, let me know what you think!

The pharmacy did call me the next day to resend the script for Bicillin and then said they’ll order the box and ship it. Awaiting arrival and hopefully the extra insulation keeps it cool enough. In the meantime I paid the full freight for a box from CVS just in case, hopefully that will be the last time I have to do that.

I got to see Dr K briefly on Tuesday as they opened the office to do blood draws - he wants me to start IVIG quickly but I’ll be relying on a donated supply. He seems quite certain it’s post infectious autoimmune/PANDAS regardless of whatever the MDL comes back with. I have to contact him next week and let him know how I feel while doing Bicillin every 5 days but hopefully He can Get IVIG rolling ASAP.

In my almost 3 years of treating I’ve never dealt with this symptom pattern - the transient bouts of rage/irritability/depression are pretty new and very scary, and for the first time I’ve developed some periodic muscle twitches in my R bicep (also could be from the vibration of mowing my lawn - who knows). The Bicillin seems to help at least for a day or two - I have stretches where I feel symptom free except for the pesky POTS. I’m still able to work and drive Thankfully.

I’ve got some herbs lying around - I wonder if I should add those in (JK, Houttynia, cats claw, Sida Acuta) as a trial while I wait for everything else to fall in line. I got a bottle of oil of oregano as well in case i wanted to give the Marty Ross Hout/SA/Oregano Bart mix a go on the tiny chance it’s residual Bart.

dcd2103 said...
Solaris, was curious how you’re making out?

I just read The Autoimmune Brain by David Younger. Goes along w all the stuff we’ve been talking about. Found it pretty inferesting, helped strengthen my view that mine is post-infectious autoimmune

Hey Dcd,

I’ve been doing the 1.2M Bicillin every 5 days (have done 3 doses so far) which has been helpful and further confirms to me that it’s post infectious autoimmune. The psych symptoms are better controlled (but still not like it was before the relapse) but the autonomic (POTS, Fatigue) are about the same - though I’m certain it will take months before those improve due to the slow healing of nerves. Taking my usual supplements like circumin, NAC, zinc, omega 3, and vitamin D has a noticeable positive effect (I suspect it’s mostly the circumin). I won’t touch any NSAIDS or Aspirin since I seem to get a horrific rebound effect from them. Held off on the prednisone as well.

I messaged Dr. K on Friday informing him of my status liked he asked and am waiting for a response and also the results from the MDL blood draw on 6/30. Guessing he’s just waiting to look at those before getting me going on IVIG - I’m Incredibly eager to get started and hope he can get me enough of a supply to get me to remission. Don’t know how the dosing works with ivig yet.

I finally got a shipping confirmation from that Canadian pharmacy you alerted me to for the Bicillin and it is due to arrive Friday - I’ll let you know if the product is the same (it’s 600 bucks for 10 which is 1/3 the cost of what I’m paying now). Curiously, the pharmacist on the phone said that it didn’t have to be shipped in a refrigerated pack which is news to me, I thought Bicillin had to always be kept cool. I paid for extra cold packing and insulation with shipping so I’ll see how it Was packed when it arrives. I googled and I did see one drug website say that you could have bicillin unrefrigerated but that they are only good for 60 days if not kept cool. Not sure if it starts out cool and then warms up en route that they are still safe to use. Do you know of any specifics regarding Bicillin and temperature?

I did some weight lifting yesterday afternoon and then had 2 beers last night and stayed up late watching the UFC fight and today I felt like I set myself back - felt like my brain was swollen/inflamed. I really need to make an effort to improve my diet which is not something I’ve ever done very well during my 3 years of dealing with this. Are you doing anything diet related and if so has it helped?

I paid for the refrigeration - so I hope it is in fact refrigerated and still cold when it arrives - it says estimated delivery is Friday which has me worried. They took so long because they had to special order the box and that took about a week. As long as the product is safe and usable upon arrival I’ll be perfectly happy. If it’s warm I’ll have to decide whether it’s usable or just dispose of it.

That book certainly sounds interesting - my involvement is def CNS and ANS but not PNS. I didn’t realize your case was so challenging, I hope whatever path you choose gets you relief. If you can stop the immune system attack on your nerves perhaps over time you’ll get enough healing to return to some sense of normalcy. What doctors are you seeing for this, A specialized neurologist?

One of the more frustrating things about these issues, especially in my case where there’s quite literally no evidence of anything on bloodwork and imaging, is that I’m completely reliant on Dr K. My PCP (who is great otherwise) and every other specialty I’ve seen would just say I’m crazy.
I feel like I’m so close to remission and every time I get just about there something happens. Before this relapse I was quite content to just be on Bicillin for the rest of my life if I had to (and hopefully have my wife get a new job/insurance that would cover them and lessen the burden). I sure hope IVIG works because I don’t think there’s really any other options after that.

I also think More of the lyme community needs to come around To the fact that many chronic Lyme cases are autoimmune issues. If I was seeing my previous LLMD I’d still be taking abx and probably some of the most dangerous ones too. That guy had absolutely no concept of autoimmunity and no clear end point for treatment (either you felt better and stopped going, or you kept treating because he viewed any evidence of positive igM as still being infected).

Keep up the good fight. I should be hearing about IVIG tomm or wed and will post when I hear back.

I arrived at the post infectious autoimmune from 4 primary factors: 1) The antibiotics I was used to taking (and I’ve taken many since my journey started) started to become more difficult to take and then they started to make me feel worse - essentially flipping 180 degrees from when I started treating in Oct 2017; 2) Dr K’s influence; 3) Bicillin got me to remission twice; and 4) The testing started to not make sense (Igenix, MDL, Quest) with how I was feeling.

Dr K mentioned his belief that many “chronic Lyme” patients develop immune dysfunction, through either outright autoimmune conditions or scenarios where the immune system starts spitting out igM antibodies even in the absence of a pathogen which leads to terrible outcomes: you’ll test positive for antibodies to Lyme/Bart/Babs even though the infection may be cleared, you’ll feel like you’re still infected because your immune system is behaving like there’s a pathogen and generate inflammation and symptoms, and you’ll continue to pound your body with antibiotics when you may in fact have no pathogens.

The primary driver of my illness was Bart, but my first LLMD (whom I consider a quack) neglected to tell me about the Igenix and MDL labs since Quest testing for co-infections are worthless. So I took aggressive combos of abx which made me feel better and I would then immediately feel worse after stopping. After 8 months of that, I switched to Dr K, hit the Bart with Rifampin (I’m still amazed that all the doxy/zith/tindamax I took didn’t touch it) and after lasting 8 weeks on it I finally returned to myself (I was pale, had lost weight, and was barely able to work when I started it).

To this day I believe if I had started with attacked Bart with Rifampin earlier I wouldn’t have ended up with this condition. 8 months of constant assault of Bart plus Lyme and Babs (though I’m still not sure if I ever had it) probably wrecked my immune system. I was 100% symptom free while on Bicillin from July 2018 to Feb 2019 when the symptoms returned as I weened off Bicillin. Should have just went back to the weekly dosage and I bet I would have been fine. Instead I ended up Treating for Babs/Bart the entire 2019 Because I tested positive for Babs (MDL) and Bart (Igenix) - but these were both antibody tests and I now believe I was just chasing the ghosts of infections past for the entire year because as time went on the med intolerance, autonomic dysfunction/POTS really got worse (I think this is that feedback loop you describe) . Bicillin from Feb to June got me to symptom free except for POTS and some exercise intolerance, and then I relapsed and ended up in my current state.

Similar to you in that We thought we had a different diagnosis which allowed the true source to continue unimpeded.

I’ll ask Dr K about the panel and I will def try DNRS once I get the ivig going. Here’s hoping that’s what finally ends this battle. I would love to hear your tips on getting ivig bc im not sure how much donated bags I’m going to get from this trial.

dcd2103 said...
quite a story man, very helpful for me to hear. i'm glad youre on the right track now.

Edit: removed email address - you can enable it in your profile

I made my email viewable in my profile if you want to message me - assuming you had put yours in your previous post but admins had to remove.

I actually received the Bicillin today from that Canadian pharmacy! Thankfully my wife home and was able to sign for it. It was a refrigerated pack but wasn’t particularly cold, but good enough I believe. They actually put a temperature Sensitive sticker on the Bicillin box that changes color if exposed to a certain elevated
temp for too long - none of the 3 levels (brief, moderate, prolonged) were lit up so I think they’re good to go! They’re in my fridge now, identical to what I get from CVS. It’ll be a bit before I try them out (got 9 shots left in my other box) but it’s looking good so far!

sure i made my email viewable