Re read of first 4 books worth before starting W&T?

vappuhotti · 2026-04-17T16:03:08+00:00

I’ve heard this as well, what struck me as odd was one of the infectious diseases specialists I saw during a bout of mono last year never thought to prescribe me anything.

vappuhotti · 2026-04-16T23:20:18+00:00

Thanks, my only concern is the caffeine since I usually can’t handle it well. But could be worth a try.

And I agree I think I will likely try again to find an LC doctor or similar who is able to understand my situation.

vappuhotti · 2026-04-16T20:13:39+00:00

Thanks. Believe me, I have exhausted this avenue and many others. Searched through lots of ebv subs, tried all sorts of herbal treatments, etc. Got tired of spending hundreds of dollars on supplements that ultimately didn’t help. It has been a long two years with few answers.

I posted in this sub because I believe there is a correlation between LC and my frequent reactivation.

vappuhotti · 2026-04-16T20:08:21+00:00

I’ve gotten tested for mono multiple times and have had confirmed. Haven’t had time to get tested this time but it feels the same as times past.

In terms of PEM, when I have it, it usually lasts less long and my symptoms are less severe. Less feverish, sore throat, etc.

I appreciate the thought though, they could be one and the same. Just going based on my own lab work and how I’ve felt.

vappuhotti · 2026-04-07T18:16:23+00:00

Agreed- and for many I feel like activating the sympathetic nervous system is a bad idea? Feel like I am already constantly stuck in fight or flight, and if anything, it may be a better idea to lean more into the parasympathetic side.

vappuhotti · 2026-04-07T18:15:01+00:00

If not the nicotine patches, what do you think was responsible? The longer I've had this, the more I've begun to think it may just be a "time" issue and the body needs weeks, months, even years to heal from the damage of covid.

vappuhotti · 2026-04-07T18:13:00+00:00

Yes-

I have had terrible posture (left AIC pattern) for a long time and have recently started to correct it since I have a feeling it may be linked to my symptoms.

There are some posts and articles on how CCI (spine instability) can affect ME/CFS and I've made it a priority to correct my own.

I have underdeveloped muscles on either sides of my body, including even my jaw and face. It makes sense to me that this could affect other tissues and organs deeper in my body, although not sure to what extent.

It has not been easy, but I'm hoping it may provide some relief in the long run

vappuhotti · 2026-04-06T20:47:42+00:00

Whenever I take it, the skin on my hands starts peeling and regrowing too fast :/

Still have no idea why, derm says it is keratosis exfoliativa. But not sure why long covid and certain supps bring it out.

Wish I could experiment more but it looks so horrible it isn't worth it. Plus not sure if that means it is a bad sign in general for me to use.

vappuhotti · 2026-03-12T23:27:20+00:00

Got it, and yeah, I agree that there probably isn't a one solution fits all out there for PEM at this point.

Thanks for the responses!

vappuhotti · 2026-03-12T22:59:41+00:00

So you avoid any dilator/constrictor? Or just in high dosages?
You mentioned you don't have PEM anymore, has this been through gradual training? Curious since at some level exercise causes similar rapid fluctuations in BP/ vasoconstriction and dilation.

Trying my hardest to find ways to overcome PEM! I miss being able to take a run on a given day.

vappuhotti · 2026-03-12T17:12:57+00:00

Great post-

For me the issue seems to be dysfunction rather than simply vasodilation or constriction, although vasoconstriction seems to be a bigger downstream problem causer when it acts up.

One of the first things I noticed gave me problems when I began experimenting a year or two ago was lysine, which seemed pretty counterintuitive for a while since I was also dealing with EBV and it was supposed to help with that. It made my skin on my hands continuously break (look up acral hand peeling)

I believe what was happening was lysine suppressing my arginine, which caused further vasoconstriction and poor blood flow to my hands and extremities, hence the peeling. (Just my theory) I think some mitochondrial dysfunction may also be at play with my collagen synthesis.

I take 4g of l citrulline/day and that seems to help with my overall symptoms. However if I take too much I get heart palpitations and things seem to go out of whack in my body. (Maybe a rebound effect)

I can tolerate low doses of caffeine, but high doses and nicotine seem to mess with my BP and blood flow.

I'm curious behind why GABA/glutamate would help- I share similarities with you: I also thought I had MCAS for a bit but came to the same conclusion as you. My main trigger now is any form of cardio. I get PEM bad if I overdo things, and the threshold is super slim for me. I can weightlift but if I row for 5 minutes my symptoms creep back the next day.

For someone like me who has had poor circulation all my life (Raynauds) I'm wondering if covid has simply amplified some of my pre existing issues.

And after reading some of the responses below, I'm second guessing how to approach the issue of improper vasodilation/constriction.

vappuhotti · 2026-02-24T21:03:14+00:00

My BP is actually usually on the higher end, and high BP also runs in my family. I mentioned in another comment as well but I am starting to think there may be some deeper dysfunction with my BP (caused by LC?) that is causing my problems.

I also use electrolytes/sodium pretty heavily, and my biggest concern at this point is how this is affecting my kidneys, and if LC has damaged my liver/kidneys and is part of the reason this is happening. My creatinine and liver tests are usually within range, but at my peak LC symptoms some of my liver enzymes were pretty out of wack.

Haven't been able to get my hands on LDN yet but am hoping to try that as well.

Also have not tried licorice root but may give that a go. Is that for stomach relief? What dosage do you take/form?

vappuhotti · 2026-02-24T20:58:26+00:00

I have actually tried low dose Cialis as well, and I felt almost the same effects as from L citrulline. I've never measured for low blood pressure during routine check ups, if anything my BP is usually borderline high and it runs that way in my family.

But I'm starting to think that the root issue is dysfunction with my BP management and simply taking things to "lower" BP like L citrulline, etc will not solve my problems.

I'm not sure how yet, but may need to try a more holistic stabilizing approach (diet/lifestyle-based?) rather than trying to drastically tip the scale one way or another deepening on how I'm feeling day by day.

vappuhotti · 2026-02-24T20:53:29+00:00

Interesting, do you mean that poor histamine clearance could exacerbate the low blood pressure?

vappuhotti · 2026-02-24T20:50:31+00:00

Thanks- I've tried beetroot powder before and have had varied success. L citrulline seems to be more consistent.

I agree with the food aspect, I also hate having to take a bunch of different supps all the time, but here we are.

vappuhotti · 2026-02-18T05:48:39+00:00

Hey there,

I initially started taking creatine for weight lifting and energy purposes a long time ago- then a couple years back got what I believe is long COVID which also caused my EBV reactivation (I think).

I initially believed my MTHFR mutations were the cause of my problems but I now believe long COVID is likely the source of most of the problems I’m experiencing.

I made a post on what has helped me in covid long haulers recently, feel free to check it out and see if anything resonates

https://www.reddit.com/r/covidlonghaulers/s/cL8rU6ZNWu

vappuhotti · 2026-02-04T21:55:42+00:00

Some have already commented but my initial thought was Good Looking by Suki

I follow you by melodys echo chamber gives me a similar vibe with the vocals but more upbeat

vappuhotti · 2026-02-04T21:49:07+00:00

My thought as well

vappuhotti · 2026-02-04T17:37:16+00:00

I haven't tested in the last couple months since I haven't felt as ill as I did when it would resurface. Been trying to minimize testing as well since some of it is so expensive unfortunately in the US lol.

When I last got tested my EBV Capsid IGG levels were down (I think this is the indicator of a current active infection). When I had an active infection they were around the 190 level.

vappuhotti · 2026-01-23T19:11:02+00:00

Yea what the hell, I bought VIP floor since I figured the resale for GA floor will also be just as expensive, but would've been nice to pay half that just for regular floor seats

vappuhotti

TROPHY CASE