Severe ME/CFS bedridden on bad days with brain fog, now much better with NADH and D-ribose
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 4 years
- Last post
- Oct 2021
In their words
- Condition: ME/CFS
I had severe severe cfs starting 2017
In context ↗ - At worst: Very severe
bad day meant basically bed ridden, needed help to go to the bathroom was where I was at
In context ↗ - Now: Much better
I had severe severe cfs starting 2017, am far better by comparison now
In context ↗
Read from 5 of their posts and comments; links to the 4 this page draws on
Summary
Comet 10239 had severe ME/CFS from 2017, with bad days bedridden and needing help to the bathroom, and brain fog so severe they struggled to form sentences. A 2019 graded exercise programme changed nothing. An earlier folic acid deficiency treatment helped mildly. From 2021 a self-trial of probiotics, acetyl-L-carnitine, NADH and D-ribose brought gains, especially NADH and D-ribose; they were far better but still had brain fog and fluctuating fatigue.
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What they tried
What they credit
Also tried
Their words about each treatment
- Folic acid · Helped
doctors found I had a folic acid deficiency, this alleviated things mildly
In context ↗ - GET · No change
Overall it made me no better nor worse, was an utter waste of time
In context ↗ - Mindfulness · Worse
mental exercises and the like were just as, if not more, draining than physical
In context ↗ - probiotics · Helped
I gave probiotics a go, significant improvement
In context ↗ - Acetyl L Carnitine · Helped
Then gave acetyl l carnitine a go, marginal improvement
In context ↗ - NADH · Helped a lot
Started taking NADH 5.5mg twice a day, this gave the most significant improvement
In context ↗ - D-Ribose · Helped
Have started D-Ribose this week, 5grams three times a day and so far strong boost in energy
In context ↗ - Vitamin D · Not said
In terms of vitamins, Vitamin D, Folic acid, Magnesium, Vitamin C and Potassium, B12, Iron & B1 are what I take.
In context ↗ - paracetamol · Helped
I also took paracetamol to help with the aches and stuff I was getting which seemed to work
In context ↗ - COVID vaccination as treatment · Worse
I crashed pretty hard after my first dose
In context ↗
Approaches: Amino acids and carnitine · Supplements
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| 2017 | ME/CFS began, severeI had severe severe cfs starting 2017In context ↗ | |
| 2019 | bad days bedridden, needed help to the bathroom; referred for GETbad day meant basically bed ridden, needed help to go to the bathroom was where I was atIn context ↗ | |
| 2021-09-20 | brain fog much improved with probiotics and NADHStarted taking NADH 5.5mg twice a day, this gave the most significant improvementIn context ↗ | NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP) |
| 2021-10-02 | far better overall, strong energy boost from D-riboseI had severe severe cfs starting 2017, am far better by comparison nowIn context ↗ | NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP) |
Adverse events
- COVID vaccination as treatment“I crashed pretty hard after my first dose” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Brain fog
Brain fog hit me severely, it was sudden and basically killed me
In context ↗ - Post-exertional malaise
If for example I explained that I have two components, PEM and then the fatigue generally fluctuating of its own accord regardless
In context ↗ - Pain & fibromyalgia
usually my aches aren't so responsive to painkillers
In context ↗
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