ME/CFS
Moderate → much betterIll 12 years before improving or writingNeeds ongoing treatment
Largely inactive for years with ME/CFS, now much better with methylated B12 and folate
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 12 years
- Last post
- Sep 2023
In their words
- Condition: ME/CFS
I have chronic fatigue so I need to be careful with this.
In context ↗ - At worst: Moderate
I did nothing for three years because my lungs were so painful
In context ↗ - Now: Much better
My life is semi normal.
In context ↗ - Began after: another virus
I got the flu in 2011.
Read from 120 of their posts and comments; links to the 55 this page draws on
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Summary
Kestrel 73803 fell ill after a flu in 2011 and spent years largely inactive with crushing lung pain, IBS, insomnia and brain fog, homeless at her sickest. A move to 9,000 feet worsened her for seven years until a methylation disorder was treated with methylated B12 and folate. She credits those, quercetin, senolytic activators, diet and moderate exercise with slow partial improvement, but still cannot work full time.
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What they tried
What they credit
strict elimination diet· Helped a lotQuercetin· Helped a lotSenolytic activators· Helped a lotmethylated b12 and folate· Helped a lot · mainmethylated b12 and folate· Helped a lot · mainmoderate exercise (yoga, walking, hiking, bike riding)· HelpedVipassana meditation· Helpededible weed· Helped · mainnutritionist / dietician· HelpedFODSMAPS diet· HelpedEpsom salt baths and hot water· HelpedFitbit· Helpedcultured foods· HelpedVitamin D· Helpedb complex· HelpedChinese herbs· Helpedrest· Helpedavoiding all fatty meat, fish, cheese, and eggs· Helpedcovid vaccines· Helped
Also tried
Atrovent· Helped a lotsex· HelpedNiacin· Helped · wore offpotassium· HelpedMRI contrast dye· HelpedMacuna· HelpedBonny Bell Calms magnesium with calcium· HelpedBonny Bell Calms magnesium with calcium· Helpedgua sha and cupping· Helpedstretching and massage· HelpedProgesterone (Bezweckin Progon B)· HelpedAshwaganda· Worseglutathione· WorseLow histamine diet· Worsemuscle relaxers· WorseSSRIs· WorseLDN· Much worsePlaxovid· Not saidVitamin B6 (pyridoxine, P5P)· Not said
Their words about each treatment
- Ashwaganda · Worse
Ashwaganda is great until you end up with thyroid toxicosis like I did.
In context ↗ - strict elimination diet · Helped a lot
Doing a strict elimination diet fixed this.
In context ↗ - moderate exercise (yoga, walking, hiking, bike riding) · Helped
Consistent but mild exercise. Especially yoga.
In context ↗ - sex · Helped
Sex makes me feel a lot better.
In context ↗ - Vipassana meditation · Helped
Vipassana meditating in bed to help my body relax. And it’s distracting.
In context ↗ - LDN · Much worse
It made me want to blow my brains out with two guns.
In context ↗ - Quercetin · Helped a lot
Quercetin and Senolytic activators really cleared the brain fog and fatigue.
In context ↗ - Senolytic activators · Helped a lot
Senolytic activators we’re really helpful as well.
In context ↗ - methylated b12 and folate · Helped a lot
Within hours it was like I could suddenly breath and think.
In context ↗ - glutathione · Worse
Someone had me take glutathione early on and the only thing it did was destroy my sleep.
In context ↗ - edible weed · Helped
Edible weed and meditation has helped more than anything.
In context ↗ - nutritionist / dietician · Helped
I’ve worked with a dietician as well and it was very helpful but not a miracle cure.
In context ↗ - FODSMAPS diet · Helped
The FODSMAPS diet was more helpful along with Quercetin.
In context ↗ - Epsom salt baths and hot water · Helped
That, hot water, and edible weed were my only escape from hell for a very long time.
In context ↗ - Fitbit · Helped
A fit bit really helped my sleep.
In context ↗ - Low histamine diet · Worse
It was too stressful and not worth it for me personally.
In context ↗ - cultured foods · Helped
I think cultured foods have really helped me and that avoiding them because of histamine issues didn’t.
In context ↗ - Vitamin D · Helped
I’ve been taking 5000 daily for at least ten years.
In context ↗ - Niacin · Helped
It really helped me with depression long ago along with a b complex.
In context ↗ - b complex · Helped
A b complex really helped. Vitamin b.
In context ↗ - muscle relaxers · Worse
I had a bizarre reaction to muscle relaxers
In context ↗ - Atrovent · Helped a lot
Atrovent really helped me. Immediately.
In context ↗ - potassium · Helped
Getting diagnosed and treated with low D, magnesium, calcium, and potassium.
In context ↗ - MRI contrast dye · Helped
It makes me crushing lung pain evaporate and warms up my chest.
In context ↗ - Macuna · Helped
Taking Macuna really helped until I started methylated vitamins which seemed to make it too much so now I only take methylated vitamins.
In context ↗ - Chinese herbs · Helped
Quercetin, Senolytic activators, Chinese herbs, moderate exercise
In context ↗ - rest · Helped
I rest. I’ve kinda made resting my job and feel a lot better ever since.
In context ↗ - Bonny Bell Calms magnesium with calcium · Helped
I take Bonny bell calms magnesium which was a game changer.
In context ↗ - avoiding all fatty meat, fish, cheese, and eggs · Helped
Magnesium, avoiding all fatty meat, fish, cheese, and eggs helped me a lot.
In context ↗ - gua sha and cupping · Helped
One thing that quickly calms it down is gua sha and cupping.
In context ↗ - stretching and massage · Helped
Stretching and massage also really help as well as cupping and gua sha.
In context ↗ - Progesterone (Bezweckin Progon B) · Helped
Progesterone. This also helps manage histamines.
In context ↗ - SSRIs · Worse
Serotonin syndrome sucked.
In context ↗ - covid vaccines · Helped
I feel like it helped me. Maybe it was other things but I definitely feel better since getting them.
In context ↗ - Plaxovid · Not said
It was rough. Made my mouth taste like blood.
In context ↗ - Vitamin B6 (pyridoxine, P5P) · Not said
B6 really fucks me up.
In context ↗
Approaches: Alternative therapies · Diet · Exercise and activity · Mind-body practices · Other drugs and medicines · Pacing · Supplements · Vaccination
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 |
|---|---|---|
| 2011 | flu; very sick for four monthsI got the flu in 2011. I was really sick for four months.In context ↗ | |
| 2013 | slowly better over two years after quitting smoking and drinkingmy lungs got worse so I quit smoking and drinking and got better over two years ... I was feeling delicate but overall okIn context ↗ | |
| 2013 | moved to 9,000 feet; all original symptoms came back worseI woke up feeling like a truck ran over me ... all my original symptoms came back much worse and never went awayIn context ↗ | |
| 2018 | seven years of worsening, three years doing nothing because of lung painI got worse and worse over seven years ... I did nothing for three years because my lungs were so painful | |
| 2018 | diagnosed and treated for a methylation disorder with methylated B12 and folateI got diagnosed and treated for a methylation disorder five years ago. That turned things around.In context ↗ | |
| 2021 | felt better overall after five COVID vaccinationsI really think so because I’ve gotten so much better since the vaccines started.In context ↗ | COVID vaccination as treatment |
| November 2022 | first COVID infection knocked her backCovid knocked me back down a bit sadly.In context ↗ | |
| August 2023 | semi-normal life, part-time work, still always tiredI’m a lot better but I’m not old self by a long shot.In context ↗ |
Adverse events
- Ashwagandha“Ashwaganda is great until you end up with thyroid toxicosis like I did. ... I got super irritable and hot.” In context ↗ Side effects
- Low-dose naltrexone“LDN made me want to blow my brains out fyi. Proceed w caution.” In context ↗ Suicidal thoughts or attempt
- Glutathione“Someone had me take glutathione early on and the only thing it did was destroy my sleep.” In context ↗ Insomnia from treatment
- Niacin (vitamin B3)“I got pregnant and suddenly it was making me flush but I kept taking it and now I can’t touch it.” In context ↗ Side effects
- COVID vaccination as treatment“The first two made me very sick and less so with each one after.” In context ↗ Made symptoms worse
- Vitamin B6 (pyridoxine, P5P)“B6 really fucks me up.” In context ↗ Side effects
- Magnesium“It messed with my digestion at first but it also made me feel so much better I didn’t care.” In context ↗ Gut side effects
- “Tried something last year that made me insane for a month which was scary.” In context ↗ Mood or psychiatric effects
- Paxlovid / nirmatrelvir“It was rough. Made my mouth taste like blood.” In context ↗ Side effects
- Antidepressants (unspecified)“Serotonin syndrome wasn’t fun yet subsequent providers tried to get me to take more SSRIs.” In context ↗ Side effects
- Folate / folic acid supplements“Folic acid would fuck me up.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeart symptoms & palpitationsMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
Fatigue, post exertional malaise, asthma, getting sick constantly
In context ↗ - Brain fog
Quercetin and Senolytic activators really cleared the brain fog and fatigue. I still have those things but they seem mild in comparison.
In context ↗ - Sleep problems
It’s only a minor issue now as far as sleep goes
In context ↗ - Gut problems
My digestion is a mess.
In context ↗ - Heart symptoms & palpitations
I had crushing chest pain that brought me to my knees a few times.
In context ↗ - Anxiety & low mood
I’ve lost so many friends and I’m very depressed about it.
In context ↗ - Neuropathy & tingling
Helped my lungs, digestion, brain, and all the weird tingly stuff I had going on.
In context ↗ - Pain & fibromyalgia
I’ve had back problems much of my life but they got a lot worse when I got sick.
In context ↗ - Mast cell (MCAS) & allergies
I’d become hypersensitive to so many things I was sleeping on my porch.
In context ↗ - Flu-like symptoms
felt hungover all the time
In context ↗ - POTS & dysautonomia
I had internal shakes and they didn’t take me seriously at all. Thankfully they went away after a few years.
In context ↗
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