Very sick with ME/CFS, now much better and working 30 hours a week on B12 and folate
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 15 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I’m a long flu person. I got sick in 2011 when I was 38.
In context ↗ - At worst: Severe
I was beyond wiped out. My soul was dead. Chronic pain erodes you.
In context ↗ - Now: Much better
I still can’t work full time, but for the most part I can work 30 hours a week which is glorious.
In context ↗ - Began after: another virus
I’m not a long Covid person. I’m a long flu person. I got sick in 2011 when I was 38.
Read from 24 of their posts and comments; links to the 15 this page draws on
Summary
Long flu began in 2011 at age 38, with four months very sick; a move to high altitude in 2013 made her much worse. She credits methylated B12 and folate for a methylation disorder that cleared her brain symptoms within hours, plus quercetin, Amazake, diet and meditation. A two-year crash from 2022 followed; chronic pleurisy was later diagnosed. She now works about 30 hours a week and is far more functional, though not full time.
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What they tried
What they credit
Also tried
Their words about each treatment
- Methylated b12 and folate (methylfolate + methylcobalamin) · Helped a lot
What helped the most in general was methylated b12 and folate.
In context ↗ - Amazake / rice koji · Helped a lot
it helped my energy and sleep so much
In context ↗ - Quercetin · Helped
Methylated b12 and folate. Amazake. Quercetin. All helped a lot.
In context ↗ - Vitamin D · Helped
D. Magnesium. More potassium. Iron.
In context ↗ - Magnesium and potassium · Helped
Magnesium. More potassium.
In context ↗ - Low histamine diet · Helped
Low histamine diet. Quercetin. Senolytic activators.
In context ↗ - Chinese herbs / Jia Wei xiao Yao San · Helped
I take Jia Wei xiao Yao San for pms.
In context ↗ - Vipassana meditation · Helped
Vipassana meditation and my own meditation endlessly.
In context ↗ - Guarding time and energy · Helped
Guard my time and energy like they are the precious resources they are.
In context ↗ - Resting like it's my job · Helped
Resting like it’s my job.
In context ↗ - Senolytic activators · Helped
Senolytic activators.
In context ↗ - Atrovent (ipratropium inhaler) · Helped a lot
Atrovent fixed it within seconds.
In context ↗ - Albuterol · Much worse
After years of them trying albuterol on me with horrible results
In context ↗ - Botox · Helped a lot
Occipital neuralgia. Botox and ten weeks of acupuncture fixed it.
In context ↗ - Acupuncture · Helped a lot
Botox and ten weeks of acupuncture fixed it.
In context ↗ - LDN · Much worse
LDN made me want to end things big time. It was brutal.
In context ↗ - Xanax · Worse
if you forget to take Xanax when you are physically addicted to it things do not go well. I got off it as fast as possible
In context ↗ - Paxil · Much worse
Then I had to go on Xanax for two months to come down from the Serotonin syndrome the Paxil caused.
In context ↗ - Pepcid · Not said
I’m off Pepsid, Imodium, and ibuprofen after changing my diet and getting my vitamins sorted.
In context ↗
Approaches: Diet · 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 |
|---|---|---|
| 2011 | Long flu onset at age 38I was very sick for four months. Felt shell shocked after and have never felt the sameIn context ↗ | Moderate |
| 2013 | Moved to high altitude, much worseGot a lot lot lot lot lot worse when I moved to high altitude in 2013.In context ↗ | Moderate |
| 2018 | Diagnosed and treated for a methylation disorder; brain improved within hoursI was diagnosed and treated for a methylation disorder. I felt better within hours.In context ↗ | Mild |
| 2022 | Hit a wall and crashed for two yearsIn 2022 I hit a wall. I was done despite methylated vitamins helping ... I was beyond wiped out. My soul was dead.In context ↗ | Severe |
| 2023 | Chronic pleurisy diagnosed; able to work againOnce I was no longer suicidal from endless pluiritic pain I could actually work.In context ↗ | Mild |
| October 2026 | Working about 30 hours a week; a lot more functionalI still can’t work full time, but for the most part I can work 30 hours a week which is glorious.In context ↗ | Mild |
Adverse events
- Paroxetine (Paxil)“Then I had to go on Xanax for two months to come down from the Serotonin syndrome the Paxil caused.” In context ↗ Side effects
- Alprazolam (Xanax)“if you forget to take Xanax when you are physically addicted to it things do not go well” In context ↗ Withdrawal problems
- Low-dose naltrexone“LDN made me want to end things big time. It was brutal.” In context ↗ Suicidal thoughts or attempt
- Albuterol / salbutamol (Ventolin)“After years of them trying albuterol on me with horrible results” In context ↗ Made symptoms worse
- Chinese herbal medicine (TCM formulas)“Jia Wei makes me lose weight if I take too much.” In context ↗ Other
Symptoms mentioned
Their words about their symptoms
- Brain fog
I felt like my brain was melting.
In context ↗ - Pain & fibromyalgia
Chronic pain erodes you.
In context ↗ - Anxiety & low mood
Once I was no longer suicidal from endless pluiritic pain I could actually work.
In context ↗ - Sleep problems
it helped my energy and sleep so much
In context ↗ - Headaches & migraine
Occipital neuralgia. Botox and ten weeks of acupuncture fixed it.
In context ↗ - Heart symptoms & palpitations
Crushing. For seven horrible years.
In context ↗ - Gut problems
had been shitting on myself all day every day for years
In context ↗ - Mast cell (MCAS) & allergies
A mast disorder was kicking my ass on top of other things.
In context ↗
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