ME/CFS
Severe → relapsedIll 15 years before improving or writingNeeds ongoing treatment
Bedbound with ME/CFS, improved, then COVID relapse; credits GLP-1 and pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 15 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
ME/CFS x 15 years. POTS, MCAS too
In context ↗ - At worst: Severe
After getting covid, I was severe for a few months and am now moderate
In context ↗ - Now: Relapsed
covid seems to have made the ME intractable. The best I can get is the gentler side of moderate
In context ↗ - Began after: nothing they could name
looking back, there were some episodes of what I’d now call mild ME
Read from 34 of their posts and comments; links to the 23 this page draws on
Summary
Moon 35070 was diagnosed with ME/CFS in 2011 at 41 and was bedbound before improving enough to lead a hiking group in 2014. Treating a Babesia infection brought 90-95% improvement, but a second COVID infection in 2024 left them bedbound again. By 2026 they were back to the gentler side of moderate, working eight hours a day reclined, crediting GLP-1 agonists and pacing.
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What they tried
What they credit
pacing· Helped a lot · mainbabesia infection treatment· Helped a lotsemiglutide (sublingual microdose) / tirzepatide· Helped a lot · mainsemiglutide (sublingual microdose) / tirzepatide· Helped a lot · mainultra low dose naltrexone· Helpedmethylene blue· Helpedtrauma healing / trauma therapy· Helpedstrictly avoiding food intolerances· Helpedhuperzine A· Helpedlow dose abilify· Helpedmold detox· Helped
Also tried
leaving toxic people/relationships· Helpedhypnosis· Helpedhydration· Helpedstill point inducer· Helpedtherapeutic tremor· Helpednicotine patches· Helpedpaxlovid· Helped · wore offmilky oats tincture· HelpedIrlen lenses / colour filter· Helpednervous system regulation· Helpedpyridostigmine· HelpedPOTS meds· Worsemontelukast· Not saidcetirizine· Not saidliposomal glutathione· Not saidadeno and hydroxy B12· Not saidalpha lipoic acid· Not saidNADH· Not saidlactobacillus rhamnosus· Not saidvitamin c· Not saidvitamin d· Not saidECGC· Not saidubiquinone· Not saidbeta carotene· Not saidvitamin e succinate· Not saidEPA/DHA· Not saidlithium orotate· Not saidzinc picolinate· Not saidarabinogalactan· Not saidmagnesium L-threonate· Not saidquercetin and bromelain (Aller-C)· Not saidmelatonin· Not saidmultivitamin (Polyphenol Nutrients)· Not saidberberine and pau d’arco (Candida Cleanse)· Not saidberberine and pau d’arco (Candida Cleanse)· Not saiddesiccated adrenal· Not saidnettles leaf infusion· Not saidLumia· Not said
Their words about each treatment
- ultra low dose naltrexone · Helped
Ultra low dose naltrexone, methylene blue, pacing, trauma healing, strictly avoiding food intolerances
In context ↗ - pacing · Helped a lot
GLP-1 agonist was the biggest most consistent game changer for me. That and pacing
In context ↗ - strictly avoiding food intolerances · Helped
strictly avoiding food intolerances and toxic people/relationships
In context ↗ - hypnosis · Helped
Adding a few not already mentioned: mindless games (township is the current), hypnosis, hydration, methylene blue, still point inducer, therapeutic tremor
In context ↗ - hydration · Helped
hypnosis, hydration, methylene blue, still point inducer, therapeutic tremor
In context ↗ - babesia infection treatment · Helped a lot
They found and treated a babesia infection with 90-95% improvement.
In context ↗ - montelukast · Not said
Prescription: ultra low dose naltrexone, montelukast
In context ↗ - cetirizine · Not said
OTC and supplements: cetirizine, liposomal glutathione
In context ↗ - liposomal glutathione · Not said
cetirizine, liposomal glutathione, adeno and hydroxy B12
In context ↗ - adeno and hydroxy B12 · Not said
liposomal glutathione, adeno and hydroxy B12, alpha lipoic acid
In context ↗ - alpha lipoic acid · Not said
adeno and hydroxy B12, alpha lipoic acid, NADH
In context ↗ - NADH · Not said
alpha lipoic acid, NADH, lactobacillus rhamnosus
In context ↗ - lactobacillus rhamnosus · Not said
NADH, lactobacillus rhamnosus, vitamin c
In context ↗ - vitamin c · Not said
lactobacillus rhamnosus, vitamin c, vitamin d
In context ↗ - vitamin d · Not said
vitamin c, vitamin d, ECGC
In context ↗ - ECGC · Not said
vitamin d, ECGC, ubiquinone
In context ↗ - ubiquinone · Not said
ECGC, ubiquinone, beta carotene
In context ↗ - beta carotene · Not said
ubiquinone, beta carotene, vitamin e succinate
In context ↗ - vitamin e succinate · Not said
beta carotene, vitamin e succinate, huperzine A
In context ↗ - huperzine A · Helped
Huperzine A is helpful. I started at 25 mcg every other day and slowly worked up to 100 mcg day.
In context ↗ - EPA/DHA · Not said
huperzine A, EPA/DHA, lithium orotate
In context ↗ - lithium orotate · Not said
EPA/DHA, lithium orotate, zinc picolinate
In context ↗ - zinc picolinate · Not said
lithium orotate, zinc picolinate, methylene blue
In context ↗ - arabinogalactan · Not said
methylene blue, arabinogalactan, magnesium L-threonate
In context ↗ - magnesium L-threonate · Not said
arabinogalactan, magnesium L-threonate, quercetin and bromelain (Aller-C)
In context ↗ - quercetin and bromelain (Aller-C) · Not said
magnesium L-threonate, quercetin and bromelain (Aller-C), melatonin
In context ↗ - melatonin · Not said
quercetin and bromelain (Aller-C), melatonin, multivitamin (Polyphenol Nutrients)
In context ↗ - multivitamin (Polyphenol Nutrients) · Not said
melatonin, multivitamin (Polyphenol Nutrients), berberine and pau d’arco (Candida Cleanse)
In context ↗ - berberine and pau d’arco (Candida Cleanse) · Not said
multivitamin (Polyphenol Nutrients), berberine and pau d’arco (Candida Cleanse), desiccated adrenal
In context ↗ - desiccated adrenal · Not said
berberine and pau d’arco (Candida Cleanse), desiccated adrenal, nettles leaf infusion
In context ↗ - nettles leaf infusion · Not said
desiccated adrenal, nettles leaf infusion
In context ↗ - nicotine patches · Helped
I started nicotine patches about 6 weeks ago. Cut through the covid brain fog like a hot knife through butter.
In context ↗ - POTS meds · Worse
I have low BP and couldn’t tolerate any of the POTS meds.
In context ↗ - paxlovid · Helped
I got Covid and felt so much better on paxlovid
In context ↗ - milky oats tincture · Helped
taking 0.5mL 1-2 x day and I notice a gentle calming effect. Helpful for more restful sleep.
In context ↗ - Irlen lenses / colour filter · Helped
I then adjusted the color filter to match. ... Helps so much!
In context ↗ - low dose abilify · Helped
just started low dose abilify and am feeling a bit more energy
In context ↗ - mold detox · Helped
a gazillion supplements, parasite treatment, mold detox, MCAS stabilization, trauma therapy, nervous system regulation, pacing, leaving toxic relationships
In context ↗ - nervous system regulation · Helped
trauma therapy, nervous system regulation, pacing, leaving toxic relationships
In context ↗ - Lumia · Not said
I just got the Lumia two days ago.
In context ↗ - pyridostigmine · Helped
being managed with some pyridostigmine (also helpful for POTS)
In context ↗
Approaches: GLP-1 drugs · Diet · Mould avoidance · Other drugs and medicines · Pacing · Supplements · Trauma & somatic work
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2011 | diagnosed with ME/CFS at 41, after earlier mild episodesDiagnosed at 41 but looking back, there were some episodes of what I’d now call mild ME.In context ↗ | Mild | |
| 2011-2013 | bedbound after diagnosisI was diagnosed in 2011 and went from bedbound to leading a hiking group in 2014.In context ↗ | Severe | |
| 2014 | leading a hiking groupwent from bedbound to leading a hiking group in 2014In context ↗ | Near normal | |
| 2019 | partial wheelchair user2019 was a partial wheelchair user.In context ↗ | Moderate | |
| 2019 | Babesia infection found and treated at the Center for Complex DiseaseThey found and treated a babesia infection with 90-95% improvement.In context ↗ | Mild | Antiparasitics |
| 2023 | walking at least a mile a day2023 walking at least a mile a day.In context ↗ | Mild | |
| 2024 | COVID infection, went from very mild to bedboundI went from very mild ME pre-Covid to bedbound.In context ↗ | Severe | |
| mid-2024 | climbed back towards moderate about five months after COVIDIt’s taken me about 5 months to get close to moderate.In context ↗ | Moderate | |
| late 2024 | second Covid infection, back to bedbound2024 second Covid infection and back to bedbound.In context ↗ | Severe | |
| 2025 | started microdosed GLP-1, more energy and faster recovery from exertionEarly days but I have more energy and recover more quickly from exertion.In context ↗ | Moderate | |
| 2026 | back to the gentler side of moderate, working eight hours a day reclined from homeI’m pretty much moderate. Low symptoms if I’m in bed 99% of the day but I work a regular 8 hours semi to fully reclined on my computer with lots of breaks.In context ↗ | Moderate |
Adverse events
- “I have low BP and couldn’t tolerate any of the POTS meds.” In context ↗ Side effects
- Low-dose naltrexone“When I started low dose naltrexone even 0.5 mg was too much and I had to decrease to 0.1 mg.” In context ↗ Side effects
- Semaglutide (Ozempic, Wegovy), Tirzepatide (Mounjaro, Zepbound)“I did struggle with a little gastroparesis but it’s being managed with some pyridostigmine” In context ↗ Gut side effects
Symptoms mentioned
Brain fogGut problemsHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
And when it’s PEM, my heart rate also goes low.
In context ↗ - Brain fog
The only significantly different symptom was cotton wool brain with a weird sense of time and blurry vision.
In context ↗ - POTS & dysautonomia
A lot to my symptoms are POTS and MCAS end of the spectrum with strong neuro features.
In context ↗ - Mast cell (MCAS) & allergies
I have MCAS and am sensitive to virtually every medication.
In context ↗ - Sleep problems
Sleep used to be hell. Hard to fall asleep and waking frequently when I was on the moderate-severe range.
In context ↗ - Pain & fibromyalgia
muscle and bone pain
In context ↗ - Heart symptoms & palpitations
I’d regularly see low 30s even though my baseline is in the 60s. Highs in 150-180s.
In context ↗ - Temperature regulation
Heated scarf and lots of layers to avoid getting cold which is a trigger.
In context ↗ - Muscle weakness
intermittent paralysis
In context ↗ - Gut problems
I did struggle with a little gastroparesis but it’s being managed with some pyridostigmine (also helpful for POTS).
In context ↗ - Light & noise sensitivity
Noise cancelling headphones (over the ear because the in ear ones aren’t enough for me).
In context ↗
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