Largely bedbound with ME/CFS, briefly improved then relapsed; mestinon and ubiquinol help

Condition: ME/CFS
At worst: Severe (mostly bedbound)
Ill before improving or writing: 2 years
Last post: Jun 2026

In their words

Condition: ME/CFSI have ME/CFS, POTS, MCAS, some kind of connective tissue disorder and probably more. In context ↗
At worst: SevereI’ve been bed bound largely as a result of severe muscle weakness, likely as a part of ME/CFS. In context ↗
Now: RelapsedI think drinking alcohol at that wedding and over exerting made me fully relapse and I’ve never recovered. In context ↗
Began after: COVIDI had mild POTS after my first Covid, but then reinfected Dec 2023.

Read from 82 of their posts and comments; links to the 49 this page draws on

Summary

They had long COVID with mild POTS, worsened after a December 2023 reinfection, briefly improved enough to dance at a wedding, then relapsed after alcohol and overexertion there and never recovered. They became largely bedbound with severe muscle weakness, nerve pain, POTS and MCAS; a one-day CPET lowered their baseline further. Mestinon helped a bit and ubiquinol helps their pain; gabapentin and ivabradine made things worse, and they felt worse after starting famciclovir.

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What they tried

What they credit

Mestinon· Helped · main · wore off Craniosacral massage· Helped Ice baths and ice packs· Helped Yoga nidra and meditation· Helped Rapamycin· Helped

Also tried

Triptans· Helped CGRP inhibitors· Helped Huperzine A· Helped · wore off CoQ10 / ubiquinol· Helped Antihistamine / elimination diet· Helped Probiotic (Smidge)· Helped Myofascial release· Helped L-ornithine L-aspartate (LOLA)· Helped Midodrine· Helped D-ribose· Helped Pacing (talking less)· Helped Radical rest· No change CBD· No change THC· No change Lidocaine· No change Claritin· No change Pepcid· No change NAC· No change Electrolytes, abdominal compression and stockings· No change Electrolytes, abdominal compression and stockings· No change Nervous system work· No change Epicatechin· No changeMitokatlyst-E· No changePhosphatidylcholine· No change Magnesium· Worse L-theanine· Worse NSAIDs· Worse Cromolyn· Worse Deep tissue massage· Worse Famciclovir· Worse Fludrocortisone· Worse Vagus nerve stimulator· Worse Low-dose naltrexone· Worse Oxaloacetate· Worse Curcumin· Worse Pycnogenol· Worse Buspirone· Worse Tylenol· Worse Red light· Worse B-complex vitamins· Worse COVID vaccination as treatment· Worse Benzodiazepines (unspecified)· Worse Ivabradine· Much worse Gabapentin· Much worse Gentle exercise to rebuild strength· Much worse Creatine· Not said Lumia device· Not said

Their words about each treatment

Triptans · HelpedThey are well controlled with triptans and CGRP inhibitors. In context ↗
Magnesium · WorseI’d been taking at least 500mg of magnesium every night for 7 or 8 years prior to getting LC In context ↗
Mestinon · HelpedI did use mestinon and it’s the only thing that helped me a bit. In context ↗
Ivabradine · Much worseI have found that artificially lowering my HR with ivabradine made me feel much worse. In context ↗
Gabapentin · Much worseGabapentin- even very small dose drastically worsened my neuromuscular weakness and it never recovered. In context ↗
Gentle exercise to rebuild strength · Much worseThat’s what made me bedbound too, trying my best to keep moving when my body physically couldn’t do it. In context ↗
Radical rest · No changeI’ve been thinking if it’s just PEM then radical rest should help, but it has not helped In context ↗
Craniosacral massage · HelpedMyofascial release and craniosacral massage gave me some temporary relief, especially when focused on the neck and head. In context ↗
Ice baths and ice packs · Helpedice baths temporarily helped a bit In context ↗
Huperzine A · HelpedI briefly took huperzine A (same mechanism to mestinon). It did give me some temporary clarity In context ↗
Creatine · Not saidI’m giving it a try. Not sure if it’s helping In context ↗
Yoga nidra and meditation · HelpedHonestly the only thing that really helps me is listening to yoga nidra videos on YouTube In context ↗
L-theanine · WorseFor those with POTS or low blood pressure, be aware that l-Theanine can lower BP. I tried it and that’s what it did to me In context ↗
CoQ10 / ubiquinol · HelpedIt does help me with body pain and some with mental clarity but not much else. It needs to be ubiquinol form to work for me. I take 400mg. In context ↗
NSAIDs · WorseIdk if it’s the same thing but I get MCAS reactions to NSAIDs ... Itching, increased pain and
CBD · No changeNSAIDS, CBD, THC, lidocaine haven’t helped much. In context ↗
Claritin · No changeI’ve been doing Claritin, Pepcid, cromolyn and anti-histamine diet but still getting worse MCAS. In context ↗
Cromolyn · WorseAlso, starting cromolyn made my MCAS worse. I just lowered the dose to see if that helps. In context ↗
Antihistamine / elimination diet · HelpedA very strict elimination diet has helped somewhat. In context ↗
Probiotic (Smidge) · HelpedI tried a probiotic that actually made my gut feel a little better, while most I’ve tried have made it worse In context ↗
Deep tissue massage · WorseOther types like deep tissue made me worse In context ↗
L-ornithine L-aspartate (LOLA) · Helpedtrying now at a higher dose and maybe helps a bit after each dose In context ↗
Famciclovir · WorseStarted famciclovir and feeling worse. In context ↗
NAC · No changeNAC hasn’t helped me, haven’t tried the others In context ↗
Midodrine · HelpedI also think midodrine helps a little with pain- it helps get the blood to my brain In context ↗
Electrolytes, abdominal compression and stockings · No changeBeen doing various different POTS meds plus compression, electrolytes etc, but no improvements yet. In context ↗
Fludrocortisone · WorseI think fludro gives me MCAS reactions. In context ↗
Vagus nerve stimulator · WorseI found vagus nerve stimulators to make me feel worse. In context ↗
Nervous system work · No changeBeen working in this nervous system and honestly no affect on symptoms yet. In context ↗
Low-dose naltrexone · WorseI also had a bad experience with LDN. Burning nerve pain in my upper teeth, roof of mouth, and facial nerves. In context ↗
D-ribose · HelpedI’m noticing a little bit of benefit from ~4g D Ribose. In context ↗
Rapamycin · Helpedafter 3 weeks on rapamycin I started to feel like it improved a bit In context ↗
Epicatechin · No changeIt did nothing for me, stopped taking it In context ↗
Oxaloacetate · WorseMessed me up MCAS-wise, as a word of caution In context ↗
Curcumin · WorseCurcumin, pycnogenol, among other things make this more severe for me In context ↗
Mitokatlyst-E · No changeThis supplement didn’t help me at all. Not going to continue with it In context ↗
Buspirone · WorseNot sure if you’re dealing with POTS or low BP, but it lowered my BP too much. I couldn’t tolerate it In context ↗
Tylenol · WorseI have found Tylenol, Advil and red light to exacerbate my pain. In context ↗
Phosphatidylcholine · No changeDidn’t do anything for me In context ↗
Pacing (talking less) · HelpedI try to pace by talking out loud less, which helps a bit In context ↗
Lumia device · Not saidMonths later and now have my Lumia device. I can see several different reactions in real time when I stand up. In context ↗
B-complex vitamins · WorseB-complex vitamins, heat, magnesium supplements, gabapentin and alcohol make everything worse. In context ↗
COVID vaccination as treatment · WorseThey messed me up bad. And still didn’t prevent long covid for me In context ↗
Benzodiazepines (unspecified) · Worsetaking a benzo dose does not help my symptoms and in fact can make me feel groggier, tachycardia increases, and weaker In context ↗

Approaches: POTS medication · Alternative therapies · Mind-body practices · Other drugs and medicines

Their path

How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. 3 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.

Show as a table

When	What happened	Where they were	After
onset	long COVID with mild POTS after a first COVID infectionI had mild POTS after my first Covid In context ↗	Mild
Dec 2023	temporary worsening after COVID reinfectionbut then reinfected Dec 2023. Temporarily worsened things for a short period and then I started to get better In context ↗	Mild
—	well enough to dance all night at a weddingwas well enough to dance the night away at a wedding In context ↗	Near normal
—	full relapse after alcohol and overexertion at the weddingI think drinking alcohol at that wedding and over exerting made me fully relapse and I’ve never recovered In context ↗	Moderate
2024-08	bedbound with severe postural and respiratory muscle weaknessMy back, shoulder, core and neck muscles are so weak I can’t hold myself in any position. In context ↗	Severe
2025-02	slight pain improvement on rapamycin, then paused for low white cellsafter 3 weeks on rapamycin I started to feel like it improved a bit In context ↗	Severe	Rapamycin / sirolimus
2026-06	still severely ill with pain and muscle weaknessit has not improved any of my long covid symptoms at all In context ↗	Severe

Adverse events

COVID vaccination as treatment“They messed me up bad. And still didn’t prevent long covid for me” In context ↗ Made symptoms worse
Everyday exercise and activity“I’ve tried so many times to do gentle exercises to start to build back strength and it only makes me worse” In context ↗ Made symptoms worse
L-theanine“it lowered by blood pressure too much ... I tried it and that’s what it did to me” Low blood pressure or fainting
Ivabradine“they rescinded the mestinon and gave me ivabradine. Wouldn’t you know it, I really declined with that change. ... artificially lowering my HR with ivabradine made me feel much worse” Made symptoms worse
Ivabradine“Ivabradine- gave me sudden sensitivity to light and sound which didn’t have until I took it” In context ↗ Made symptoms worse
Ivabradine“I went off ivabradine over 6 months ago but tbh I don’t think I have recovered from it.” In context ↗ Made symptoms worse
Mestinon / pyridostigmine“I only felt a little restless when I took on totally empty stomach personaly.” In context ↗ Side effects
Gabapentin (Neurontin)“My doctor gave me gabapentin and it made everything SO SO much worse. Literally numb and nearly paralyzed. ... Gabapentin- even very small dose drastically worsened my neuromuscular weakness and it never recovered” Made symptoms worse
Magnesium, Gabapentin (Neurontin), Vitamin B complex“B-complex vitamins, heat, magnesium supplements, gabapentin and alcohol make everything worse.” In context ↗ Made symptoms worse
Magnesium“too much magnesium can cause weakness. Due to this effect, I have to be very careful with magnesium.” In context ↗ Made symptoms worse
Cryotherapy and cold exposure“being cold all-over is also bad, it makes me shiver and shake, and uses up too much energy. So a cold bath is not good for me now.” In context ↗ Made symptoms worse
CoQ10 / ubiquinol“It made me more hungry too. My tachycardia got worse on it.” In context ↗ Made symptoms worse
Massage“Other types like deep tissue made me worse” In context ↗ Made symptoms worse
“I did a one-day CPET, and it destroyed me. It lowered my baseline and I haven’t fully recovered from it 6 months later.” In context ↗ Made symptoms worse
Famvir / famciclovir (Pridgen)“Started famciclovir and feeling worse.” In context ↗ Made symptoms worse
Vagus nerve stimulation“I found vagus nerve stimulators to make me feel worse.” In context ↗ Made symptoms worse
Cromolyn (Gastrocrom, Nalcrom)“Also, starting cromolyn made my MCAS worse.” In context ↗ Made symptoms worse
Fludrocortisone / Florinef“I think fludro gives me MCAS reactions.” In context ↗ Made symptoms worse
NSAIDs (unspecified)“I get MCAS reactions to NSAIDs” In context ↗ Made symptoms worse
Probiotics and fermented foods“most I’ve tried have made it worse ... I can’t tolerate probiotics right now due to histamine/MCAS issues” Gut side effects
Rapamycin / sirolimus“my doctor told me to pause it because my bloodwork looked bad, my white blood cells are now too low because of the rapa” In context ↗ Blood count problems
Benzodiazepines (unspecified)“taking a benzo dose does not help my symptoms and in fact can make me feel groggier, tachycardia increases, and weaker” In context ↗ Made symptoms worse
Turmeric / curcumin, Pycnogenol and grape seed extract“Curcumin, pycnogenol, among other things make this more severe for me.” In context ↗ Made symptoms worse
Pycnogenol and grape seed extract“Curcumin, pycnogenol, among other things make this more severe for me.” In context ↗ Made symptoms worse
Compression garments“sometimes I get a rebound effect when I take them off at night” In context ↗ Other
Oxaloacetate“Messed me up MCAS-wise, as a word of caution” In context ↗ Made symptoms worse
NSAIDs (unspecified), Paracetamol / acetaminophen (Tylenol, Panadol), Red and near-infrared light therapy“I have found Tylenol, Advil and red light to exacerbate my pain.” In context ↗ Made symptoms worse
Red and near-infrared light therapy“I have found Tylenol, Advil and red light to exacerbate my pain.” In context ↗ Made symptoms worse
Low-dose naltrexone“Burning nerve pain in my upper teeth, roof of mouth, and facial nerves.” In context ↗ Nerve pain
Low-dose naltrexone“worsened insomnia” In context ↗ Insomnia from treatment
Phosphatidylcholine“my MCAS was a a little more flared during that time as well, so I don’t think it played well with my mast cells” In context ↗ Made symptoms worse

Symptoms mentioned

Brain fog Gut problems Headaches & migraine Heart symptoms & palpitations Light & noise sensitivity Mast cell (MCAS) & allergies Muscle weakness Neuropathy & tingling POTS & dysautonomia Pain & fibromyalgia Post-exertional malaise Sleep problems Temperature regulation

Their words about their symptoms

Post-exertional malaiseI definitely have PEM at this point In context ↗
POTS & dysautonomiaI definitely have POTS at least. In context ↗
Mast cell (MCAS) & allergiesSo it’s very clear that MCAS is a part of my problem. In context ↗
Muscle weaknessMy primary symptom is muscular fatigue and weakness. In context ↗
Neuropathy & tinglingTrunk, back and arms feel crushed with burning, pins and needles, weakness, pain. In context ↗
Pain & fibromyalgiaThis is like 9.5/10 pain In context ↗
Sleep problemsIncreased heavy feeling like gravity is turned up 1000%, and worsened insomnia. In context ↗
Heart symptoms & palpitationscan make me feel groggier, tachycardia increases, and weaker In context ↗
Headaches & migraineI’ve had terrible migraines my whole life. They are well controlled with triptans and CGRP inhibitors. In context ↗
Gut problemsBut I would have insomnia and constipation as a result In context ↗
Light & noise sensitivityIvabradine- gave me sudden sensitivity to light and sound which didn’t have until I took it In context ↗
Temperature regulationbeing cold all-over is also bad, it makes me shiver and shake, and uses up too much energy In context ↗
Brain fogIt does help me with body pain and some with mental clarity but not much else. In context ↗

Largely bedbound with ME/CFS, briefly improved then relapsed; mestinon and ubiquinol help

Ask Miruvor AI

What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

Ask Miruvor AI

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

Ask Miruvor AI

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