Bedbound with long COVID and ME/CFS, now much better after high-dose thiamine
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 11 years
- Last post
- Jul 2024
In their words
- Condition: ME/CFS
Had CFS since I was 18. I’m 29 now.
In context ↗ - At worst: Severe
I was bed bound from longcovid until I started high dose thiamine.
In context ↗ - Now: Much better
I’m like 70% recovered since
In context ↗ - Began after: COVID
I was bed bound from longcovid until I started high dose thiamine
In context ↗
Read from 22 of their posts and comments; links to the 15 this page draws on
Summary
Canyon 79890 had CFS from age 18 and was bedbound with long COVID. High-dose thiamine, taken with methylfolate and riboflavin cofactors, left them about 70% recovered, and they later used sulbutiamine for POTS and physical fatigue. They reported B6 toxicity causing neuropathy while taking thiamine cofactors.
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What they tried
What they credit
Also tried
Their words about each treatment
- Thiamine (thiamine HCl, benfotiamine, TTFD) · Helped a lot
I’ve had big success with high dose thiamine, niacin, B complex, and vitamin C
In context ↗ - Gluten-free diet · Helped
Cutting out gluten from the diet made it go away
In context ↗ - Acetyl L-Carnitine · Helped
The supplements that most reliably raise energy for me are: ... Acetyl L-Carnitine
In context ↗ - NADh · Helped
I take the NOW foods NADh 10 mg. ... It works in 15 minutes.
In context ↗ - Natto and serra · No change
Used to take natto and serra together. There was no noticeable difference while taking it.
In context ↗ - Cysteine/NAC · Not said
It does deplete glutathione so I would take riboflavin and NAC
In context ↗ - Bromelain · Not said
You’ll also want to take Cysteine and Bromelain.
In context ↗ - Resveratrol · Not said
I did that combo, along with 20 other supplements a day for over a year.
In context ↗ - Baby aspirin · Not said
I’ve taken that combo no problem.
In context ↗ - Diphenhydramine · Helped
Diphenhydramine works okay
In context ↗ - Seroquel · Much worse
Seroquel is plain bad news. Intensified fatigue and psychotic rage when coming off.
In context ↗ - Zopiclone · Helped
Zopiclone was awesome for boosting motivation and calming anxiety.
In context ↗ - Opioids · Helped
Opioids are great sleep aids. Dependency sucks ass.
In context ↗ - Valerian · Helped
Valerian, melatonin, chamomile, black cumin oil, etc etc… all worth a try, but not super strong.
In context ↗ - Gabapentin · Worse
Gabapentin is pretty nice, but the fatigue day after is shit. I also grew dependency to it.
In context ↗ - Trazodone · Worse
Trazodone: anxiety the next day
In context ↗ - Benzos · Helped
Benzos are good. Taking it once a day seems alright. This seems to have the least repercussions and most effective, as long as used responsibly
In context ↗ - Ginseng · Helped
Ginseng helped with orthostatic intolerance and lack of motivation. But made tics worse.
In context ↗ - Bupenorphine · Helped
Micro dose bupenorphine. 50 micrograms.
In context ↗ - Low-dose naltrexone · Worse
I tried low dose naltrexone and it made tics worse.
In context ↗ - Dexedrine · Helped a lot
Dexedrine was able to make me work full time hard labor job.
In context ↗ - Modafinil · Helped
Modafinil was great for excessive day time sleepiness and helped with physical fatigue a little.
In context ↗ - Sulbutiamine · Helped
Sulbutiamine 200 mg a day is really taking care of the POTS and physical fatigue. ... I think it reduced PEM significantly
In context ↗ - Amantadine · Helped
Amantadine / Memantine is great overall. ... It helps with the “tired but wired” feeling.
In context ↗ - Memantine · Helped
I take Memantine every couple days, along with NAC, butyrate, and curcumin.
In context ↗ - Vitamin B6 / P5P · Much worse
I was taking vitamin B6 and P5P for maybe 4 years on and off. I never noticed the toxicity symptoms until I started taking TTFD and other thiamines.
In context ↗ - Caffeine · Helped
The supplements that most reliably raise energy for me are: ... Caffeine
In context ↗
Approaches: Amino acids and carnitine · Other drugs and medicines · Stimulants · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. 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 |
|---|---|---|---|
| age 18 | CFS began at 18Had CFS since I was 18. I’m 29 now.In context ↗ | Not stated | |
| before February 2023 | bedbound with long COVIDI was bed bound from longcovid until I started high dose thiamineIn context ↗ | Severe | |
| 2023-04-18 | about 70% recoveredDefinitely try thiamine. I’m like 70% recovered sinceIn context ↗ | Mild | Thiamine / benfotiamine |
| 2024-03-26 | POTS and fatigue managed with sulbutiamineSulbutiamine 200 mg a day is really taking care of the POTS and physical fatigue.In context ↗ | Mild | Thiamine / benfotiamine |
Adverse events
- Quetiapine (Seroquel)“Seroquel is plain bad news. Intensified fatigue and psychotic rage when coming off.” In context ↗ Withdrawal problems
- Zopiclone (Imovane)“But if I use it for more than a week in a row, it makes me anxious.” In context ↗ Mood or psychiatric effects
- Gabapentin (Neurontin)“Gabapentin is pretty nice, but the fatigue day after is shit. I also grew dependency to it.” In context ↗ Side effects
- Trazodone (Desyrel)“Trazodone: anxiety the next day” In context ↗ Mood or psychiatric effects
- Vitamin B6 (pyridoxine, P5P)“I got up to 200 mg a day, and then got neuropathy from B6 toxicity.” In context ↗ Nerve pain
- Low-dose naltrexone“I tried low dose naltrexone and it made tics worse.” In context ↗ Made symptoms worse
- Ginseng“Ginseng helped with orthostatic intolerance and lack of motivation. But made tics worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I think it reduced PEM significantly
In context ↗ - POTS & dysautonomia
Sulbutiamine 200 mg a day is really taking care of the POTS and physical fatigue.
In context ↗ - Sleep problems
Modafinil was great for excessive day time sleepiness and helped with physical fatigue a little.
In context ↗ - Anxiety & low mood
that seemed to uplift my life long fatigue and depression
In context ↗ - Neuropathy & tingling
then got neuropathy from B6 toxicity
In context ↗
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