ME/CFS
Severe → much betterIll 6.5 years before improving or writingNeeds ongoing treatment
Almost bedridden with ME/CFS, now much better after a specialist regimen and pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6.5 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
Full blown ME/CFS by early 2023.
In context ↗ - At worst: Severe
By 2023 I was almost bedridden. Couldn’t be in a room with talking or bright light.
In context ↗ - Now: Much better
managed to move me from bedbound/housebound to mild ... I'm taking a class twice a week
In context ↗ - Began after: COVID
I got COVID in March of 2020.
Read from 54 of their posts and comments; links to the 33 this page draws on
Summary
A California woman infected with COVID in March 2020 was sick six months, partly recovered, then relapsed and was almost bedridden by early 2023, unable to drive and sensitive to light and noise. An out-of-pocket ME/CFS specialist regimen of LDN, Abilify, guanfacine, rapamycin, antivirals, antihistamines and pacing brought her to mild by 2025. She now drives locally and takes a class twice a week but cannot do a big family shop or garden.
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What they tried
What they credit
Also tried
Ozempic / Mounjaro (tirzepatide)· Helped a lot · wore offOzempic / Mounjaro (tirzepatide)· Helped a lot · wore offlow carb diet· Helpedintermittent fasting· Helpedyoga nidra· Helpedpropanolol· Helped5-HTP (Thorne)· Helped · wore offSuper Aloe· HelpedAdderall· Helpedberberine· HelpedVisible app with polar heart rate monitor· Helpedwalking stick· HelpedBed jet· Helpedmelatonin· No changecannabis· No changenoratriptaline· No changeexercise· Worsevitamin B complex· Not saidWellbutrin· Not saidValtrex· Not saidpaxlovid· Not saiddexamethasone· Not saidmagnesium· Not said
Their words about each treatment
- low carb diet · Helped
as did reducing my carbs to around 30g/day
In context ↗ - intermittent fasting · Helped
I will second the intermittent fasting. That helped a lot as did reducing my carbs to around 30g/day.
In context ↗ - Ozempic / Mounjaro (tirzepatide) · Helped a lot
Previously I have taken Ozempic and seen a good improvement - I would say remission. But that didn't last and I got really sick
In context ↗ - exercise · Worse
stepped up my exercise game. Beat the T2D. Felt better … until I kept getting sick after exertion
In context ↗ - Zyrtec (cetirizine) · Helped
I take Zertec and famotodine twice per day and I don’t get the adrenaline rush or the chest pain.
In context ↗ - famotidine (Pepcid) · Helped
Combining an H1 and an H2 is best. I take Zyrtec in the morning and famotodine in the evening.
In context ↗ - pacing · Helped
I seriously rested when I was really sick and kept my heart rate below 80 as much as I could.
In context ↗ - rest · Helped
I aggressively rested and gave up all my household duties.
In context ↗ - yoga nidra · Helped
yoga nidra is exceptionally helpful
In context ↗ - propanolol · Helped
a beta blocker (propanonol has helped me)
In context ↗ - low dose naltrexone (LDN) · Helped
I have found it helps with brain fog and headaches.
In context ↗ - 5-HTP (Thorne) · Helped
I started 5-htp this weekend and I’ve had two awesome nights of sleep.
In context ↗ - abilify · Helped
LDN seems to help, and Abilify.
In context ↗ - guanfacine · Helped
None were on their own a silver bullet but each moved me forward.
In context ↗ - Tenofovir · Helped
I'm taking Tenofovir and finding that it helps a lot.
In context ↗ - rapamycin · Helped
I’ve been on it for about 8 months and have seen an improvement. I take 6 mg once a week.
In context ↗ - midodrene · Helped
Most recent add was midodrine.
In context ↗ - CoQ10 · Helped
this was one of the supplements she recommended. Like most things for ME/CFS, the improvements are small but worth it.
In context ↗ - fish oil · Helped
What worked for me: pacing and rest; antihistamines - H1 & H2 morning and evening; low dose naltrexone; fish oil; CoQ10; vitamin D; aloe
In context ↗ - vitamin B complex · Not said
I also take antihistamines, CoQ10, fish oil, B supplements and aloe.
In context ↗ - Wellbutrin · Not said
I'm currently taking abilify, LDN, Wellbutrin, and a host of supplements.
In context ↗ - melatonin · No change
I have tried melatonin, cannabis and noratriptaline (sp?). Nothing worked.
In context ↗ - Valtrex · Not said
I’ve been taking Valtrex and paxlovid, but I’m not sure if they are helping.
In context ↗ - Adderall · Helped
I recently added ADHD to my list and got Adderall which helps a bit with drive but not too much or I overdo it.
In context ↗ - dexamethasone · Not said
I take dexamethasone when I’m in a crash.
In context ↗ - magnesium · Not said
melatonin, magnesium, Adderall
In context ↗ - berberine · Helped
I tried the berberine and it worked beautifully.
In context ↗ - Visible app with polar heart rate monitor · Helped
I found the app somewhat useful.
In context ↗ - walking stick · Helped
I have a walking stick and a disabled badge for my car. Helps a lot to conserve energy.
In context ↗ - Bed jet · Helped
Bed jet - heating or cooling for the bed. Sooo good.
In context ↗
Approaches: H1 antihistamines · H2 blockers · POTS medication · Antivirals · Other drugs and medicines · Pacing · Radical rest · 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 |
|---|---|---|
| March 2020 | COVID-19; sick for about six monthsI got COVID in March of 2020. Felt really sick for 6 months.In context ↗ | Moderate |
| mid-2020 | slowly got better but never back to 100%Was sick for months - maybe August before I was feeling better. Still really tired and no real stamina.In context ↗ | Mild |
| 2022 | felt great, exercising and riding e-bike 2-3 times a week, about 85-90% of normalNot 100% but I’d say 85-90%. ... I was riding my e-bike 2-3/week up until the end of 2022. | Mild |
| early 2023 | relapse: almost bedridden, light and noise sensitivity, could not drive or readBy 2023 I was almost bedridden. Couldn’t be in a room with talking or bright light. Couldn’t think straight or drive.In context ↗ | Severe |
| November 2023 | moderately ill, mostly houseboundI’m now moderately ill, mostly housebound but I’m lucky to have huge support from family regarding cooking, housekeeping, etc.In context ↗ | Moderate |
| March 2024 | still mostly housebound at about 60% of functional capacityMostly housebound. About 60% of my functional capacity.In context ↗ | Moderate |
| February 2025 | ME/CFS specialist regimen; can drive locally, watch movies, run errandsI finally found a ME/CFS specialist and things have got much better since then. ... I can watch a movie, talk to people, run errands and drive locally.In context ↗ | Mild |
| November 2025 | crash after a week of daily outings on AdderallOn Sunday afternoon it hit me and I had to go back to my dark room and sleep in the middle of the day.In context ↗ | Severe |
| October 2026 | mild; takes a class twice a week and drives locally but still limited in shopping and gardeningI’m currently taking a 3 hour class twice a week and visiting my Mom an hour away for a couple of hours every week. I still can’t really do a big family shop or work in my garden.In context ↗ | Mild |
Adverse events
- Semaglutide (Ozempic, Wegovy)“I also took Ozempic. Worked pretty well. Slowed my digestion to a stop after about 5 months.” In context ↗ Gut side effects
- Symptom-tracking apps and wearables (Visible)“Unfortunately the polar device has nickel in it and turns out I’m allergic to it.” In context ↗ Allergic reaction / anaphylaxis
- “I had awful 'nightmares' just after falling asleep for the first couple of nights.” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“It did cause some vivid dreams and waking up with a start the first few nights but that passed” In context ↗ Insomnia from treatment
- “Its a lot to take (I feel nauseous most mornings taking it all)” In context ↗ Gut side effects
- Tirzepatide (Mounjaro, Zepbound)“had to withdraw this week due to unbearable GI side effects (gas, bloating, diarrhea)” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Post-exertional malaise
I still have to pace. If I do too much I pay for it the next day.
In context ↗ - Brain fog
Brain fog so bad I couldn't read or listen to audiobooks or drive.
In context ↗ - POTS & dysautonomia
probably some POTS, dysautonomia
In context ↗ - Mast cell (MCAS) & allergies
guanfacine (orthostatic intolerance and MCAS)
In context ↗ - Sleep problems
I sleep for 10-12 hours and still feel tired.
In context ↗ - Pain & fibromyalgia
my symptoms (extreme fatigue, brain fog, body aches) came back
In context ↗ - Headaches & migraine
Constant migraines.
In context ↗ - Light & noise sensitivity
Couldn’t be in a room with talking or bright light.
In context ↗ - Heart symptoms & palpitations
High heart rate even when doing practically nothing.
In context ↗ - Flu-like symptoms
When I don’t take it I get flu like symptoms when I go into PEM.
In context ↗ - Tinnitus
tinnitus, brain fog, word loss
In context ↗ - Temperature regulation
Main symptoms are brain fog, poor sleep, PEM, temperature regulation.
In context ↗ - Anxiety & low mood
waking up in the night with straight up anxiety and an adrenaline dump
In context ↗ - Hair loss
Chest pain, hair loss, appalling sleep quality
In context ↗
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