Bedridden with long COVID, now somewhat better after probiotics and a vagus-nerve device

Condition: Long COVID
At worst: Severe (mostly bedbound)
Ill before improving or writing: 18 months
Last post: Nov 2024

In their words

Condition: Long COVIDI've had long covid for 1.5 years In context ↗
At worst: SevereI spent Christmas day in bed wearing an eye band and noise canceling headphones because of the total inability to handle any stressor whatsoever In context ↗
Now: Somewhat betterI did fix my flight or fight after a year of suffering by doing all of the following ... No fight or flight anymore. I still have a bunch of other symptoms though In context ↗
Began after: COVIDThen I had 5 good years. Then covid... In context ↗
Says they never had: Brain fogI have POTS and small fiber neuropathy, but I do not have fatigue or brain fog.

Read from 74 of their posts and comments; links to the 46 this page draws on

Summary

Long COVID from late 2022 left this 42-year-old man with POTS, insomnia and gut problems, and small-fibre neuropathy triggered by an antibiotic; he was bedridden within six months. Diet changes, BPC-157, propranolol, pregnenolone and statins gave only partial gains, but one 0.5 mg LDN dose in September 2023 caused a lasting setback. Probiotics greatly improved his gut, and a combination including a vagus-nerve device ended his fight-or-flight; by September 2024 he still had other symptoms.

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What they tried

What they credit

pregnenolone cream· Helped a lot · main propranolol· Helped a lot BPC-157· Helped · main · wore off serrapeptase, lumbrokinase, nattokinase (rotated)· Helped serrapeptase, lumbrokinase, nattokinase (rotated)· Helped serrapeptase, lumbrokinase, nattokinase (rotated)· Helped Nurosym device· Helped guanfacine· Helped heavy metal detox protocol· Helped brain retraining program· Helped

Also tried

IVIG· Helped a lot · wore off low-histamine diet· Helped a lot low-FODMAP diet· Helped a lotcarbidopa· Helped a lotDAO· Helped gabapentin· Helped psyllium husk· Helped digestive enzymes· Helpedvitamin C (liposomal and mineral ascorbates)· Helpedginger and artichoke· Helped ginger and artichoke· Helped clonazepam· Helped clonidine· Helped tyrosine· Helped maraviroc· Helped atorvastatin· Helped targeted probiotic strains (L. bulgaricus, B. bifidum)· Helped red light band· Helped resting and staying below his safety threshold· No change fexofenadine· No change milk thistle and dandelion (liver support)· No change milk thistle and dandelion (liver support)· No change NAC and glutathione· No change L-carnitine· No change Augmentin· Much worse LDN· Much worse omega-3· Much worse magnesium· Not said dicyclomine· Not said meditation· Not said vitamin D· Not said Seed synbiotic· Not said paxlovid· Not said

Their words about each treatment

pregnenolone cream · Helped a lotI started taking pregnenolone cream, two pumps a day, and high doses of vitamin C (5000 mg a day). So far, it's working wonders. In context ↗
Augmentin · Much worseWhen I got covid I was prescribed an antibiotic, Augmentin, for a secondary infection. It triggered small fiber neuropathy (SFN) In context ↗
resting and staying below his safety threshold · No changeI rested and stayed well below my safety threshold. I was fine for a few months but in the end it didn't matter In context ↗
IVIG · Helped a lotGot IVIG and was fixed. In context ↗
low-histamine diet · Helped a lotI started a low-histamine low-FODMAP diet a week ago with 6 small meals per day. After two days my POTS was fixed. In context ↗
low-FODMAP diet · Helped a loteating a low fodmap low histamine diet fixed mine within 48 hours In context ↗
fexofenadine · No changeI tried supplements, LDN, antihistamine, serrapeptase & NK, etc. No help. In context ↗
DAO · Helpedtake DAO before your last evening meal. It will digest the histamine that you release at night In context ↗
gabapentin · HelpedI took gabapentin to be able to sleep without pain. In context ↗
psyllium husk · HelpedInterestingly, my bowel movements are great (I take psyllium husk). In context ↗
digestive enzymes · HelpedDigestive enzymes help with the pain but not with bloating. In context ↗
BPC-157 · HelpedMy Dr put me on BPC. It immediately fixed pots, adrenaline issues, and it massively improved my energy and mood. In context ↗
vitamin C (liposomal and mineral ascorbates) · Helpedhighish doses of vitamin C (liposomal and mineral ascorbates, NOT ascorbic acid) In context ↗
ginger and artichoke · HelpedI'm taking ginger and artichoke for the digestion, which seem to work. In context ↗
propranolol · Helped a lotBeta blockers, like propranolol, for 2-3 weeks saved me. In context ↗
clonazepam · HelpedI've been following an almost identical approach: 0.5 mg of clonezapam every 10 days since July 2023. In context ↗
serrapeptase, lumbrokinase, nattokinase (rotated) · HelpedThe supplements that are helping the most are BPC-157 (oral, 1mg x 2 a day) and rotating serrapeptase lumbrokinase, nattokinase. In context ↗
magnesium · Not saidMy stack: BPC, magnesium, mineral ascorbates 500 mg In context ↗
dicyclomine · Not saiddicyclomine for GI pain In context ↗
LDN · Much worsemy first dose of 0.5 mg triggered a huge setback within few hours In context ↗
Nurosym device · HelpedI bought a neurosym device and used it multiple times a day. That worked well to get out of hell. In context ↗
guanfacine · HelpedI started yesterday night and I am impressed: I could sleep ok and today I could work on my PC for 2-3 hours feeling totally relaxed and super focused In context ↗
clonidine · Helpedguanfacine works for me, or for more severe episodes, clonidine. In context ↗
meditation · Not saidI'm still taking breaks to meditate etc to minimize the probability of crashing. In context ↗
tyrosine · Helpedwhat helped me the most was tyrosine at bed time In context ↗
maraviroc · HelpedI personally don't tolerate maraviroc at all; I've been taking only 2.5 mg a day In context ↗
atorvastatin · Helpedas soon as I started statin I could sleep through the night for the first time in like 15 years In context ↗
vitamin D · Not saidyes, they are in range. I take 10,000 IU/day In context ↗
carbidopa · Helped a lottaking three carbidopa 25 mg tablets a day fixed the feeling of being overwhelmed In context ↗
targeted probiotic strains (L. bulgaricus, B. bifidum) · HelpedI improved a lot by taking the probiotic strains I am deficient in, which in my case are lactobacillus bulgaricus and bifidobacterium bifidum In context ↗
Seed synbiotic · Not saidmy Dr suggested to start the Seed synbiotic In context ↗
milk thistle and dandelion (liver support) · No changeI've been taking liver support supplements for three months now. Milk thistle, dandelion, vitamin E, glutathione, NAC, L-carnitine, etc. In context ↗
NAC and glutathione · No changeglutathione, NAC In context ↗
paxlovid · Not saidI probably tanked my liver with paxlovid In context ↗
red light band · HelpedI do two sessions s of 20 minutes a day and found it helpful for energy In context ↗
omega-3 · Much worseanything antinflammatory, including Omega3, makes me much much worse In context ↗
heavy metal detox protocol · HelpedRemove heavy metals with detox protocol In context ↗
brain retraining program · Helpeda week ago I signed up for a brain retraining program. I won't tell you which one ... it is already helping me In context ↗

Approaches: Alternative therapies · Anticoagulants · Beta-blockers · Brain retraining · Hormones & thyroid · Other drugs and medicines · Peptides · Vagus nerve stimulation

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. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.

Show as a table

When	What happened	Where they were	After
October 2022	COVID-19 infection; long COVID beginsThen I had 5 good years. Then covid... In context ↗	Not stated
November 2022	burning, tingling legs at night; hospitalised with suspected Guillain-BarréI developed it two weeks after infection. The pain at night was insane (burning & tingling). In context ↗	Moderate
January 2023	POTS and gut symptoms cleared on a low-histamine low-FODMAP dietAfter two days my POTS was fixed. In context ↗	Mild	Low-histamine diet
April 2023	bedridden with severe POTS and adrenaline, sleeping three hours a nightmy POTS was so severe that I couldn't sit up anymore, and so I was in bed in an ocean of adrenaline In context ↗	Severe
May 2023	a few weeks of propranolol broke the adrenaline stateIt worked like a charm and now I have been off propranolol for over 20 days. In context ↗	Moderate	Propranolol (Inderal)
September 2023	crashed after a single 0.5 mg dose of LDNmy first dose of 0.5 mg triggered a huge setback within few hours In context ↗	Severe
November 2023	guanfacine cleared his head and let him work and sleeptoday I could work on my PC for 2-3 hours feeling totally relaxed and super focused at the same time In context ↗	Moderate	Guanfacine
December 2023	worsening after LDN; in bed unable to tolerate any inputI spent Christmas day in bed wearing an eye band and noise canceling headphones because of the total inability to handle any stressor whatsoever In context ↗	Severe
January 2024	pregnenolone cream and high-dose vitamin C restored tolerance of noise, reading and TVSo far, it's working wonders. First, I started being able again to tolerate noise, then read, then watch tv, then walk around the house. In context ↗	Severe
March 2024	somewhat better on the Patterson protocol; works an hour a day and goes out weeklyI am somewhat better. I can work on my PC one hour a day, I sleep well, and I can even go out once a week for 2 hours. In context ↗	Moderate	Atorvastatin (Lipitor)
July 2024	COVID reinfectioneverything went south last week -- I got covid again In context ↗	Moderate
September 2024	fight-or-flight resolved with detox, a vagus-nerve device, no TV and probioticsNo fight or flight anymore. I still have a bunch of other symptoms though In context ↗	Moderate	Vagus nerve stimulation
November 2024	brain retraining program lifting his mood after a weekit is already helping me In context ↗	Moderate

Adverse events

BPC-157“my digestion issues got much worse. I can barely eat now.” In context ↗ Gut side effects
Propranolol (Inderal)“As I was tapering, I went through mild withdrawal, with a high heart rate for a couple of days” In context ↗ Withdrawal problems
Propranolol (Inderal)“I also developed eye twitches, sensitivity to foods, and diarrhea. I didn't have the symptoms before or on propranolol.” In context ↗ Side effects
Propranolol (Inderal)“propranolol made my allergies worse” In context ↗ Side effects
Propranolol (Inderal)“I had a rough withdrawal at days 14-15.” In context ↗ Withdrawal problems
Amoxicillin-clavulanate (Augmentin)“It triggered small fiber neuropathy (SFN) that was so bad that I ended three days in the hospital with the suspicion of Guillain-Barré.” In context ↗ Nerve pain
Amoxicillin-clavulanate (Augmentin)“I ended three days in the hospital with the suspicion of Guillain-Barré” In context ↗ Hospitalisation
Low-dose naltrexone“my first dose of 0.5 mg triggered a huge setback within few hours” In context ↗ Made symptoms worse
Low-dose naltrexone“small fiber neuropathy flared up: burning pain in feet and hands at night” In context ↗ Nerve pain
Low-dose naltrexone“twitches all over my body (a symptom which I never had before)” In context ↗ Side effects
Low-dose naltrexone“complete insomnia: I started (again) to wake up at 2 am, unable to fall back asleep” In context ↗ Insomnia from treatment
Low-dose naltrexone“POTS got 10 times worse ... tinnitus” In context ↗ Made symptoms worse
Propranolol (Inderal)“like diarrhea, which started only after taking propranolol” In context ↗ Gut side effects
Pregnenolone“I never liked the sublingual version. It made me too jittery” In context ↗ Side effects
Low-dose naltrexone“I took one capsule of 0.5 mg two months ago. It literally destroyed me and I haven't recovered since.” In context ↗ Made symptoms worse
Low-dose naltrexone“LDN made them worse, and added a few that I never had before: muscle twitches, and flu-like symptoms after activity.” In context ↗ Side effects
Guanfacine“it gave me crazy brain fog after 2 days. I stopped and it took a couple more days to clear.” In context ↗ Side effects
Low-dose naltrexone“I kept getting worse since LDN. No matter how much I stayed in bed, I would crash for minor stressors.” In context ↗ Made symptoms worse
Maraviroc (Selzentry)“Higher doses send me straight into sympathetic overdrive: bedridden with muscle spasms, running thoughts, inability to tolerate noise and light” In context ↗ Made symptoms worse
Probiotics and fermented foods“actually, my resting heart rate went up with the probiotics, not sure why” In context ↗ Side effects
Atorvastatin (Lipitor)“I had to stop them 2 months ago for elevated liver enzymes, which are still elevated now” In context ↗ Liver or kidney problems
Omega-3 and fish oil“anything antinflammatory, including Omega3, makes me much much worse” In context ↗ Made symptoms worse
Paxlovid / nirmatrelvir“I probably tanked my liver with paxlovid” In context ↗ Liver or kidney problems
Probiotics and fermented foods“same thing happened to me back in March! ... I think it was either die off or my immune system revving up.” In context ↗ Herx / die-off reaction

Symptoms mentioned

Anxiety & low mood Flu-like symptoms Gut problems Heart symptoms & palpitations Light & noise sensitivity Mast cell (MCAS) & allergies Neuropathy & tingling POTS & dysautonomia Post-exertional malaise Sleep problems Tinnitus

Their words about their symptoms

Post-exertional malaiseI do have clear immunological and neurological problems, like PEM, feeling sick, muscle spasms in the legs In context ↗
POTS & dysautonomiaI have hyperadrenergic pots (both blood pressure and heart rate rise when standing). In context ↗
Neuropathy & tinglingI developed it two weeks after infection. The pain at night was insane (burning & tingling). In context ↗
Sleep problemscomplete insomnia: I started (again) to wake up at 2 am, unable to fall back asleep In context ↗
Gut problemsmy digestion issues got much worse. I can barely eat now. In context ↗
Mast cell (MCAS) & allergiesI now have hives if I eat the wrong food, my intestine is a mess etc. In context ↗
Anxiety & low moodHowever, I have taken BPC pretty much continuously for months and it's helping with depression. In context ↗
Light & noise sensitivityI spent Christmas day in bed wearing an eye band and noise canceling headphones because of the total inability to handle any stressor whatsoever In context ↗
Flu-like symptomsadded a few that I never had before: muscle twitches, and flu-like symptoms after activity In context ↗
Heart symptoms & palpitationsAs I was driving to the Dr's office with a heart rate of 100+ In context ↗

Bedridden with long COVID, now somewhat better after probiotics and a vagus-nerve device

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

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What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

Ask Miruvor AI

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