just someone trying to survive. into research and experiments. data nerd. my follows ≠ endorsement. kindness over politics.
Toronto, Ontario
Joined May 2022
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It's been just over a year since I got my Pemgarda last September.
My spike AB and EBV early antigen numbers are all trending down. I don't know if it's from the HIV meds I'm taking or the Pemgarda.
I still crash, but I'm able to do much more now. Last week, I spent 30+ hours sitting at the PC building something, on top of a full-time workweek. It's for a treatment related project I'll be posting about soon.
My classic "PEM" symptoms are a lot milder and I can mostly push through them. The only thing that hasn't been helped and maybe got worse are the gut symptoms and lower back pain, which tends to be tied to GI stuff for me too. Yesterday was the start of my crash window; I felt bloated, couldn't hold down food, and woke up early this morning with most of my body in sharp pain. This is the first time I've pushed my body this hard in a while except for my trip last week, and I'm really feeling the cumulative effects now. The yawning, brain fog, dry cough, twitching, dizziness, etc are still there, but much milder.
I feel like I'm in this twilight zone now, where I'm just functioning that close to normal, but it's easy enough to lose myself and go overboard. Pemgarda probably reduced my spike-producing reservoirs overall, but the gut ones stayed, and the extra stress I bring with doing more triggers it harder.
Mestinon update, hopefully my last. This silly med has become like that one friend who’s very annoying but I’m now realizing can’t live without.
Last month, I was taking 30mg 4x/day and my energy was perfect, my brain worked perfectly, I was on top of everything, no need to lie down, no gut issues, standing didn’t cause pain, body felt lighter, could eat anything with no problems. Also pools and pools of sweat all the time, some dizziness, weird throat/drooling reflex, random cramps and aches, eyes feeling funny, basically needing 3x the magnesium RDA to manage it all.
No diarrhea. It actually made me regular. My gut has never felt better.
This week, I tried dropping down to 3x/day at 30mg again. Even worse, I started spreading it into smaller 15mg doses throughout the day. Today, I had my first crash in over a month. I ate a big pile of pumpkin seeds last night, which I started on the maximum dose of Mestinon.
I knocked out after, feeling sick all through the morning and afternoon, stuck in bed all day, extremely dizzy and sore all over my body. Stomach rumbling, gassy, belching non-stop. Twitching all over and shaky when trying to do something with my hands. Actually feeling weaker than on Mestinon. Looks like I need the 30mg push – not the extended release, not spreading out into small doses.
I have sulfur issues, but on Mestinon, somehow been able to work up to 500mg NAC twice a day and even added taurine recently. The minute I started reducing the med, it all fell apart. After resting hard all day, I can sit up now, without the impulse to lay down, and write this (semi-foggily), but man. I wanted to let it go. So badly.
If compression helps you and you have some venous return/pooling issues and/or gut motility issues, you might find Mestinon helpful. It’s been the most annoying gamechanger I’ve tried. I guess this is my destiny 😭
🔴Could Mestinon help a specific subgroup of Long COVID and ME/CFS?
We’ve already looked at why some people with Long COVID or ME/CFS might respond to metformin, while others may respond better to low-dose naltrexone.
There is another very different drug that I think is worth understanding: pyridostigmine, better known as Mestinon.
The interesting question is probably not whether Mestinon “works for Long COVID” or “works for ME/CFS” as a whole. It is whether there is a subgroup in whom autonomic transmission, venous return, preload or related neurovascular abnormalities represent an important physiological bottleneck.
To understand why that could matter, it helps to start with what Mestinon was originally developed to do.
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Just gonna leave this here. Still paying off the loan from when I had to get the raltegravir that one time. They're punishing people like me who have to pay for this stuff out of pocket because there's no funding for this kind of off-label use, I don't know...
That's great! So you didn't notice any effects on mood at all?
What freaks me out is looking it up and seeing this first thing. I'm not actively depressed or suicidal right now, but it doesn't take much to tip me back into that.
I skip anything with this warning or take the least risky option. Doctors don't like prescribing me stuff that has a big caveat either, and I'm not going to skip this conversation with any doctor.
Also, this is what I've been using sublingually. I can only do it at home because I won't unmask in public bathrooms to spit out. So it's not a reliable constant source that I need to manage mestinon side effects.
Ugh, that sounds like a whole other level of torture...
I don't have this probably because I've been hardcore keto for 7 years straight. I should probably do another CGM, but it was a totally circadian curve when I did it last year. I have literally no meal peaks.
I use this Canadian gel product. I don't take oral mag because it interferes with my meds, and my diet is really hard to push mag with. I also get IVs every 1-2 weeks. I notice the gel carries me through the IV gaps better, but I still start getting deficiency symptoms.
I have to put it all over my body and leave it on overnight or it doesn't do much. Epsom salt baths barely do anything for me.
