ME/CFS
Mild → no benefitIll for 4 yearsNeeds ongoing treatment
ME/CFS moderate, no improvement; credits LDN and low stress with preventing decline
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- 4 years
- Last post
- May 2024
In their words
- Condition: ME/CFS
My doc thinks it's ME/CFS.
In context ↗ - At worst: Mild
I can still work thankfully, but have not felt "refreshed" for a single day since 2020.
In context ↗ - Now: No benefit
The core CFS didn't really improve though.
In context ↗
Read from 26 of their posts and comments; links to the 20 this page draws on
Summary
Otter 61084 fell ill in March 2020 with feverish episodes, fatigue and sore throat; later head pressure appeared. Their doctor suspected ME/CFS after negative COVID tests. They kept working full time; they described worsening from very mild to moderate by 2021, though later called themselves still mild. High-dose thiamine, glutathione, glutamine and glycine gave brief energy boosts, but glutathione and NAC caused anxiety, a racing heart and insomnia. They credited LDN, caffeine avoidance, low stress and luck with preventing decline.
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What they tried
Also tried
Biotin· Helped a lot · wore offL-glutamine· Helped a lot · wore offVitamin B complex· HelpedThiamine HCl / mononitrate· Helped · wore offGlycine· HelpedLow-dose naltrexone (LDN)· HelpedAbstinence from caffeine· HelpedLow stress· HelpedFamotidine / Pepcid· HelpedPrilosec / omeprazole / PPI therapy· HelpedPlain antacids· HelpedGaviscon Double Action (alginate/antacid combination)· HelpedMilk of magnesia· HelpedLotion on eyelids· HelpedEye drops· No changeCPAP· WorseGlutathione· WorseNAC (n-acetylcysteine)· WorseValacyclovir· WorseRanitidine and cimetidine· WorseRanitidine and cimetidine· WorseVitamin C· Not said
Their words about each treatment
- CPAP · Worse
it gave me terrible headaches and made me very sleepy during the day, even after adjusting
In context ↗ - Vitamin B complex · Helped
B complex gives me mental energy but barely any physical energy
In context ↗ - Thiamine HCl / mononitrate · Helped
taking 500-1000mg Thiamine HCl substantially reduces my fatigue
In context ↗ - Biotin · Helped a lot
10mg (milligrams) of biotin strongly reduces my CFS fatigue, but only briefly
In context ↗ - Glutathione · Worse
Both NAC and glutathione give me a substantial energy boost, but at the cost of significant physical anxiety
In context ↗ - NAC (n-acetylcysteine) · Worse
NAC ... has a similar effect but more unpleasant than glutathione itself
In context ↗ - L-glutamine · Helped a lot
which had me feeling like my old self for a few days, then somewhat wore off
In context ↗ - Glycine · Helped
I just tried adding glycine ... and it seems to bring the energy back
In context ↗ - Low-dose naltrexone (LDN) · Helped
I think abstinence from caffeine, low stress, low-dose naltrexone (LDN), and luck have prevented me from deteriorating.
In context ↗ - Valacyclovir · Worse
it gives me nearly complete symptom resolution for a day or two, then after that I feel worse than baseline
In context ↗ - Famotidine / Pepcid · Helped
Keeping the latter under control with pepcid and milk of magnesia often calms down my sore throat.
In context ↗ - Ranitidine and cimetidine · Worse
Ranitidine and cimetidine have almost the same effect as valacyclovir for me.
In context ↗ - Prilosec / omeprazole / PPI therapy · Helped
You could try a trial of Prilosec and see if it helps (helps for me)
In context ↗ - Plain antacids · Helped
Alginate/antacid combination has helped mine more than plain antacids.
In context ↗ - Milk of magnesia · Helped
pepcid and milk of magnesia often calms down my sore throat
In context ↗ - Eye drops · No change
I also tried many types of drops, without any success.
In context ↗ - Lotion on eyelids · Helped
put some lotion on my eyelids before I go to sleep. Somehow, it seems to help a little bit.
In context ↗ - Vitamin C · Not said
I dissolve vitamin C in the water first, in the hopes of preventing the glutathione from oxidizing
In context ↗
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 |
|---|---|---|
| March 2020 | woke feeling hot, tired and sore throatRandomly woke up one day in March 2020 feeling hot (99.5-100.4), very tired, and mild sore throat.In context ↗ | Mild |
| April 2021 | episodes blur into consistent chronic fatigue, gradually worseninghave been symptomatic for one year, gradually worsening from very mild to moderate nowIn context ↗ | Mild |
| September 2023 | crashed after valacyclovir, worse than baselinethe first three days I felt almost normal. But after that I felt much worse than baseline, weak and very groggyIn context ↗ | Mild |
| May 2024 | still mildly affected, working full timeI started out very mild and luckily have continued that way, despite working a full-time desk job.In context ↗ | Mild |
Adverse events
- CPAP and sleep apnoea treatment“have tried CPAP but does not help and consistently triggers tinnitus that lasts for weeks” In context ↗ Side effects
- Thiamine / benfotiamine“taking 500-1000mg Thiamine HCl substantially reduces my fatigue*, but at the expense of worsening my already cobblestoned throat” In context ↗ Made symptoms worse
- Thiamine / benfotiamine“I still sometimes got sudden stabbing-like abdominal pain when taking large doses” In context ↗ Gut side effects
- Thiamine / benfotiamine“Thiamine in this (normal) form never caused me any unpleasant side effects other than occasional lightheadedness and mild stomach irritation (the latter at high doses)” In context ↗ Side effects
- Glutathione, NAC (N-acetylcysteine)“Both NAC and glutathione give me a substantial energy boost, but at the cost of significant physical anxiety, faster heart rate, and insomnia, none of which I usually experience.” In context ↗ Mood or psychiatric effects
- Glutathione, NAC (N-acetylcysteine)“NAC and glutathione give a substantial feeling of alertness, but at the cost of insomnia and unpleasant anxiety feeling” In context ↗ Insomnia from treatment
- Glutathione“all of my old energy is back, but it seems like there is just way too much adrenaline. i.e. the energy is not useful anymore, my heart just pounds away” In context ↗ Heart rhythm problems
- CPAP and sleep apnoea treatment“Yes, it gave me terrible headaches and made me very sleepy during the day, even after adjusting. Opposite of what I expected...” In context ↗ Side effects
- Valtrex / valacyclovir“the first three days I felt almost normal. But after that I felt much worse than baseline, weak and very groggy” In context ↗ Made symptoms worse
- Valtrex / valacyclovir“Yeah it gives me nearly complete symptom resolution for a day or two, then after that I feel worse than baseline for several days” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Brain fog
chronic fatigue and brain fog
In context ↗ - Headaches & migraine
Headachy / "pressure" feeling, mostly without pain
In context ↗ - Flu-like symptoms
Chronic mild sore throat
In context ↗ - Tinnitus
Recent onset tinnitus without hearing loss
In context ↗ - Sleep problems
have not felt "refreshed" for a single day since 2020
In context ↗ - Gut problems
gastritis and recurrent stomach ulcers ever since I got some virus
In context ↗