Severe ME/CFS, much better on high-dose thiamine and stopping Prozac

Condition: ME/CFS
At worst: Severe (mostly bedbound)
Ill before improving or writing: 5 years
Last post: Apr 2025

In their words

Condition: ME/CFSSo my point is, I had CFS from a bad infection, c diff, and then got another bad flare from a Covid infection. In context ↗
At worst: Severethen got c diff and once that was cured, was basically in a severe CFS state since 2018 In context ↗
Now: Much betterI still vacillate between mild to moderate, and have some lower than mild days now and again randomly. In context ↗
Began after: a bacterial or tick-borne infectionI had CFS from a bad infection, c diff, and then got another bad flare from a Covid infection. In context ↗

Read from 96 of their posts and comments; links to the 49 this page draws on

Summary

Heron 75572, a US man in his mid-40s, links his ME/CFS to a long c-diff infection after a 2012 liver transplant; he was severe from 2018 and quit his IT career in 2021. A high-dose thiamine protocol from April 2023 brought clear gains, as did stopping Prozac, but he fluctuates between mild and moderate, can be severe, and later reported worsening CFS symptoms. Prednisone for his gut gets him out of crashes; a psychiatric commitment cost thousands.

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What they tried

What they credit

benfothiamine, then TTFD Thiamax· Helped a lot · main · wore off prednisone· Helped magnesium· Helped B complex· Helped iron infusions· Helped Ferrochel· Helped full spectrum and infra red light panel· Helped Gatorade / electrolytes· Helped intermittent fasting· Helped

Also tried

the second best one· Helped a lotKratom· Helped · wore off THC / cannabis· Helped fecal transplant· Helped taurine and L-carnitine· Helped taurine and L-carnitine· Helped Liposomal D· Helped Milk Thistle· Helped Trifolamin· Helped Ativan· HelpedStelara (biologic)· HelpedADHD medication· Helpedcold showers· Helped breathing· Helped singing· Helped aggressive resting· Helped pacing· Helped Vancomycin· No change potassium gluconate / Potassium Citrate· Worse glutathione· Worse IV fluids· Worse Strattera· Worse Sunosi· Worse reincorporating exercise· WorsePrograf (Tacrolimus)· Not saidZinc· Not said COQ10· Not said a multi· Not saidwhole foods diet with high-thiamine foods· Not saidcaffeine elimination· Not said Meyers cocktail· Not said Antidepressants (unspecified)· Not said Ketamine· Not said

Their words about each treatment

prednisone · HelpedI have to take it to get my GI stuff under control, and it bails me out of crashes within 24 hours In context ↗
Prograf (Tacrolimus) · Not saidI take 1.5mg of Prograf (Tacro) in the morning, and 1mg in the evening, for my liver transplant anti rejection. In context ↗
Kratom · HelpedKratom was like a silver bullet for 4-6 hours for me, allowing me to get through work and other things. In context ↗
THC / cannabis · HelpedI started consuming THC again during this time. In context ↗
Vancomycin · No changecould not shake it on Vancomycin, a strong antibiotic that is the de facto for c dfif. In context ↗
fecal transplant · HelpedI finally got rid of c diff in 2018 after reciving a fecal transplant. In context ↗
the second best one · Helped a lotI got the second best one, and it worked GREAT. In context ↗
benfothiamine, then TTFD Thiamax · Helped a lotI am not exaggerating, they have transformed me in 5 or so days from near death to on the road to recovery. In context ↗
magnesium · HelpedMagnesium Malate with every meal In context ↗
potassium gluconate / Potassium Citrate · WorseI was taking Potassium, but realized my potassium was quite high from blood work, and after cutting it out, I feel better. In context ↗
B complex · HelpedB complex and a multi at least as well. In context ↗
Zinc · Not saidPotassium Citrate, Zinc, a B Complex, COQ10, and a multi. In context ↗
whole foods diet with high-thiamine foods · Not saidI have introduced a lot of whole foods, as well as foods rich in thiamine. In context ↗
caffeine elimination · Not saidOh, I eliminated caffeine, and have started a whole foods diet as well. In context ↗
taurine and L-carnitine · HelpedTaurine and l-carnitine are both good for our condition. In context ↗
Meyers cocktail · Not saidI got a meyers cocktail, fluids, and glut. The next time we upped it and I was sick a few days. In context ↗
glutathione · WorseThe next time we upped it and I was sick a few days. In context ↗
IV fluids · WorseI had on three occasions, some sort of response at the start of an IV In context ↗
iron infusions · HelpedFor me, iron infusions combine with prednisone has gotten me on a path to some recovery. In context ↗
Ativan · HelpedI have only been prescribed Ativan once, this past year, and it did a lot less than I expected it to the way people talk about it In context ↗
Stelara (biologic) · HelpedI'm on a biologic after having to quit my IT career in 2021, finally getting GI relief In context ↗
Strattera · WorseI tried Strattera, and had constipation and worse sleep. In context ↗
Sunosi · WorseI then tried Sunosi I think, and that was making me “lose time” so I had to quickly quit it. In context ↗
ADHD medication · Helpedgetting an ADHD diagnosis at 46 and having a med that helps me sleep now and quiet my brain is one part In context ↗
full spectrum and infra red light panel · HelpedI had been doing FS therapy a few weeks and it seemed to help. In context ↗
Gatorade / electrolytes · HelpedI drank a Gatorade almost every day for a good while and did well. In context ↗
reincorporating exercise · WorseI did it once, but ended up crashing, that’s the challenge. In context ↗
cold showers · HelpedCold showers are so amazing when your body is ready to handle them. In context ↗
breathing · HelpedI find them combined with breathing to be a powerful combo. In context ↗
singing · Helpedsinging helps me in certain times, massively, with HRV and Tachycardia. In context ↗
intermittent fasting · HelpedOnly food related benefits Ive seen have been tied to intermittent fasting. In context ↗
aggressive resting · HelpedMine has only gotten better in the past few days with aggressive resting, not even going on walks with my wife, which is annoying, but seemed to get me out of it. In context ↗
pacing · HelpedPacing is important. In context ↗
Antidepressants (unspecified) · Not saidSSRIs were making me more anxious, and like you, in a constant state of fight or flight. In context ↗
Ketamine · Not saidI again had violent , as they said, combative rigors. They had to hold me down In context ↗

Approaches: POTS medication · Alternative therapies · Diet · Other drugs and medicines · Supplements

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. Dates are when they posted. What the levels mean.

Show as a table

When	What happened	Where they were	After
2018	ME/CFS state after a two-year c-diff infection was curedonce that was cured, was basically in a severe CFS state since 2018 In context ↗	Severe
2021	deteriorated, had to quit his IT career2021 had to quit my career as I had deteriorated more since 2018 In context ↗	Severe
early 2023	first COVID infection while already with CFSI had CFS from a bad infection, c diff, and then got another bad flare from a Covid infection. In context ↗	Severe
2023-04	high-dose thiamine protocol, improvements within daysthey have transformed me in 5 or so days from near death to on the road to recovery In context ↗	Moderate	Thiamine / benfotiamine
2023-09	came off Prozac and felt clearerI feel like I'm waking up for the first time in months In context ↗	Mild
2023-11	gastroparesis and motility came back after two good weeksI had two weeks of normalization, and it all fell apart Sunday morning. In context ↗	Severe
2024	prednisone for gut problems lifted him out of crashesFor some reason prednisone helps. In context ↗	Moderate	Corticosteroid pulses
2024-07	CFS symptoms returned after coming off long-term prednisonethe CFS symptoms seem to be coming back in severity In context ↗	Moderate
2025-02	partial recovery, still cycling between mild and moderateI still vacillate between mild to moderate, and have some lower than mild days now and again randomly. In context ↗	Mild
2025-04	flare after overdoing it in the garden, slowly coming out with aggressive restMine has only gotten better in the past few days with aggressive resting, not even going on walks with my wife In context ↗	Mild

Adverse events

Thiamine / benfotiamine“the first few days were very bad for paradoxical effects for me” In context ↗ Side effects
Thiamine / benfotiamine“my head felt like it was going to explode at first” In context ↗ Side effects
Thiamine / benfotiamine“I felt intense thwarted belonginess for a few days, that made me veer towards suicidal ideations.” In context ↗ Suicidal thoughts or attempt
Thiamine / benfotiamine“It seems I hit the weird wall on day 8.” In context ↗ Made symptoms worse
Kratom“It felt like I was pulling from reserves each day, and I would crash after.” In context ↗ Made symptoms worse
Kratom“I had a hard time coming off that stuff.” In context ↗ Withdrawal problems
Kratom“It made gut motility worse, which seems impossible.” In context ↗ Gut side effects
Taurine, L-carnitine“taurine and carnitine monster definitely borrow energy from later on for now for me, for better or worse.” In context ↗ Made symptoms worse
Glutathione“The next time we upped it and I was sick a few days.” In context ↗ Side effects
“I deteriorated, and just assumed it was my CFS cycle. My spasms and fog got worse, I felt like I couldn't sleep again.” In context ↗ Made symptoms worse
“I felt like I couldn't sleep again.” In context ↗ Insomnia from treatment
Antidepressants (unspecified)“SSRIs were making me more anxious, and like you, in a constant state of fight or flight.” In context ↗ Mood or psychiatric effects
“my vision was partly being screwed up by Prozac.” In context ↗ Side effects
“I went into riggors, as they called it, initially calling it a seizure.” In context ↗ Side effects
Ketamine“I again had violent , as they said, combative rigors. They had to hold me down” In context ↗ Side effects
Ketamine“As I go under, same thing, intense rigors, several people had to hold me down.” In context ↗ Side effects
IV saline and fluids“This same thing happened twice earlier in the year when getting IV fluids.” In context ↗ Low blood pressure or fainting
Corticosteroid pulses“Struggling bad with prednisone side effects” In context ↗ Side effects
Corticosteroid pulses“it seems to be flaring up my face as I come off prednisone.” In context ↗ Autoimmune or inflammatory flare
Corticosteroid pulses“Coming off the steroids has made an already caring and emotional person, almost unable to function in society right now.” In context ↗ Mood or psychiatric effects
IV saline and fluids“I was trying to get IV fluids therapuetically, and almost feinted, had profuse sweating, almost blacked out” In context ↗ Low blood pressure or fainting
“I go today to get another dose of some medicine to help with my GI stuff, and AGAIN I have this terrible response.” In context ↗ Low blood pressure or fainting
Kratom“proceed to bed bound for a period trying to quit it.” In context ↗ Withdrawal problems
Kratom“you always need more over time, and then it also starts causing problems.” In context ↗ Withdrawal problems
Kratom“it seems to provide the same “borrowed time” aspect where it feels like I could get energy at the expense of feeling terrible later” In context ↗ Made symptoms worse
Atomoxetine (Strattera)“I tried Strattera, and had constipation and worse sleep.” In context ↗ Gut side effects
Atomoxetine (Strattera)“I tried Strattera, and had constipation and worse sleep.” In context ↗ Insomnia from treatment
Solriamfetol (Sunosi)“I then tried Sunosi I think, and that was making me "lose time" so I had to quickly quit it.” In context ↗ Side effects
“The prep wrecks my already hard to keep hydrated body due to absorption issues. It also makes me incredibly cold the day of.” In context ↗ Made symptoms worse
“I got vocal paralysis after my liver transplant in 2012, because of not being able to come off intubation, that was miserable.” In context ↗ Other
Faecal transplant (FMT)“fecal transplant fixed some stuff, but my worsening CFS symptoms really happened after my fecal transplant.” In context ↗ Made symptoms worse

Symptoms mentioned

Anxiety & low mood Brain fog Breathlessness Gut problems Headaches & migraine Heart symptoms & palpitations Muscle weakness Neuropathy & tingling POTS & dysautonomia Pain & fibromyalgia Post-exertional malaise Sleep problems Temperature regulation Vision problems

Their words about their symptoms

Post-exertional malaiseIt felt like I was pulling from reserves each day, and I would crash after. In context ↗
Brain fogincluding intense brain fog that made my work impossible In context ↗
POTS & dysautonomiasince around 2019 I've had progressing POTS, dysautonomia, ataxia, tachycardia, HRV, fibromyalgia In context ↗
Sleep problemsI took a nap the other day, and felt that total lack of rest feeling after In context ↗
Pain & fibromyalgiaCurrently 2am and anger posting in agonizing pain. In context ↗
Headaches & migraineI had what seemed like a cluster headache and GI pain that started mid week In context ↗
Gut problemscomplete gastroparesis or whatever you want to call it In context ↗
Breathlessnessthen eventually I can't win and I start breathing heavily In context ↗
Heart symptoms & palpitationsheart raced anytime I tried to be upright today In context ↗
Muscle weaknessThe next day it can feel like I have no strength at all, opening packages can be hard even In context ↗
Neuropathy & tinglingWeird neuropathic pain in feet dissipated in days In context ↗
Anxiety & low moodI’ve been pretty depressed and down the last few days over this In context ↗
Temperature regulationI wore pants and a hoodie all the time, and it was like I was always the same temp more or less. In context ↗
Vision problemsI don't know if it's permanent or not, mine comes and goes in ability to focus. In context ↗

Severe ME/CFS, much better on high-dose thiamine and stopping Prozac

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 credit

Also tried

Their path

Adverse events

Symptoms mentioned

Ask Miruvor AI

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