Bedbound with long COVID and severe PEM, improved on rapamycin then relapsed
- Condition
- Long COVID
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 2.5 years
- Last post
- May 2025
In their words
- Condition: Long COVID
I have had LC for 2.5+ years, since March 2022. ... was diagnosed with LC/CFS.
In context ↗ - At worst: Very severe
I couldn’t type or use the remote controller to play video games because the amount of energy expended was too high. I would spend basically all day in bed, unable to move.
In context ↗ - Now: Relapsed
As the days progressed and I hit the 3 week mark off rapamycin, my fatigue and PEM came back and it was a brutal reminder that this journey was nowhere near over for me.
In context ↗ - Began after: COVID
I have had LC for 2.5+ years, since March 2022.
- Says they never had: POTS & dysautonomia
I do not have POTS and never did.
Read from 36 of their posts and comments; links to the 15 this page draws on
Summary
A 23-year-old male runner developed long COVID in March 2022 and declined over two and a half years to being bedbound with severe PEM, rated 3-5 out of 100. Rapamycin 5 mg weekly cleared the PEM within weeks and he was exercising again, rating his health 60/100, but after six months exercise brought infections and he judged the drug immunosuppressive. Fatigue and PEM returned after he stopped it, and fluconazole did nothing.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- intermittent fasting · Helped
I have found that intermittent fasting has done the most for me, and avoid any allergens.
In context ↗ - montelukast · Worse
I immediately had a bunch of suicidal and depressing thoughts after starting
In context ↗ - anti inflammatory supps · Helped
I had it for about a month. Now seems totally fine. I think it was part of an inflammatory flare up for me, so I took a bunch of anti inflammatory supps
In context ↗ - 3 day fast · Helped
I have the ME/CFS long COVID and am doing a 3 day fast right now. At the very least, I am feeling much better in the moment.
In context ↗ - LDN · Helped
It worked for me to take the edge off of the fatigue, but only slightly.
In context ↗ - anti fungal protocol · Not said
It’s possible that the protocol I was on was not strong enough (it was all supplements, no prescription drugs)
In context ↗ - triple anticoagulant therapy · No change
I did try triple anticoagulant therapy and had the highest severity microclots and as you may have guessed, it did nothing for me.
In context ↗ - Hope Bio stem cell trial · No change
The first trial was the Hope Bio stem cell trial, which I was confirmed in the treatment arm. This did nothing for me
In context ↗ - UCSF monoclonal antibody trial · No change
I was in this trial. I was also unblinded and did in fact receive the mAbs, yet they had zero effect for me.
In context ↗ - nicotine patch · No change
I did try the nicotine patch, it didn't do anything for me.
In context ↗ - supplements · Not said
I have taken pretty much every supplement that is normally mentioned here, plus a bunch more.
In context ↗ - rapamycin · Helped a lot
Within the first 24 hours of starting rapamycin, I experienced what felt like an immunological exorcism.
In context ↗ - fluconazole · No change
There was likely no fungal infection, and the experiment was a failure.
In context ↗
Approaches: Diet · Other drugs and medicines
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 | After |
|---|---|---|---|
| March 2022 | long COVID after a mild acute infectionMy acute infection was quite mild - no hospitalization or anything like that. I had a variety of symptoms in the beginning (heart problems, vision issues, memory issues, and nerve problems)In context ↗ | Mild | |
| 2024 | bedbound with severe PEM after a steady declineI was completely bedbound and had an extremely low baseline. For reference, I couldn't type or use the remote controller to play video games because the amount of energy expended was too high.In context ↗ | Very severe | |
| October 2024 | PEM gone and back to exercise within 6 weeksI went from bed bound with PEM to playing basketball with no PEM within 6 weeks, after 2.5 years of being extremely ill with CFS-type LC.In context ↗ | Near normal | Rapamycin / sirolimus |
| early 2025 | eight mile walks and functioning without PEMI was able to get some pieces of my life back together and did things like 8 mile walks around the city, going up and down hills, and generally being able to function without any PEM.In context ↗ | Near normal | Rapamycin / sirolimus |
| late February 2025 | short runs brought on opportunistic infectionsThen I started going on short runs and realized every time I did I ended up getting sick.In context ↗ | Moderate | |
| March 2025 | fatigue and PEM returned after three weeks off rapamycinAs the days progressed and I hit the 3 week mark off rapamycin, my fatigue and PEM came back and it was a brutal reminder that this journey was nowhere near over for me.In context ↗ | Moderate | Rapamycin / sirolimus |
Adverse events
- Montelukast / Singulair“I immediately had a bunch of suicidal and depressing thoughts after starting” In context ↗ Suicidal thoughts or attempt
- Low-dose naltrexone“Maybe helped about 1%, and it really impacted my sleep, so I stopped.” In context ↗ Insomnia from treatment
- Rapamycin / sirolimus“I experienced what felt like an immunological exorcism. I felt extremely inflamed and had the worst headache I have felt in a long time.” In context ↗ Herx / die-off reaction
- Rapamycin / sirolimus“any kind of exercise made me sick. Notably, this was not PEM, but opportunistic infections characteristic of immunocompromised patients” In context ↗ Other
- Fluconazole (Diflucan)“I realized that the headache was a direct result of the fluconazole itself (since it penetrates into the CNS)” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
any time I would push myself above my exertion threshold, I would pay for it for anywhere from days in the best case to weeks in the worst case
In context ↗ - Brain fog
I did have memory problems and this hasn't seemed to help that very much
In context ↗ - Heart symptoms & palpitations
At one point early on I had bradycardia, but that went away within the first year.
In context ↗ - Vision problems
I had a variety of symptoms in the beginning (heart problems, vision issues, memory issues, and nerve problems)
In context ↗ - Neuropathy & tingling
I got tremors and nerve pain
In context ↗ - Mast cell (MCAS) & allergies
I certainly developed a high histamine sensitivity and it could be due to MCAS
In context ↗ - Pain & fibromyalgia
Yes, had costocondritis a while back. ... Mine went away after a few weeks.
In context ↗ - Anxiety & low mood
I wanted to give up so many times
In context ↗
Ask Miruvor AI
Similar stories
-
Housebound and mostly in bed with ME/CFS, now much better on rapamycin and low-carb diet
Ill for over a decade, Flint 23355 was at worst housebound and mostly in bed. Over the years she improved, crediting a low-carb, high-fat diet, iron infusions and rapamycin at 4 mg, which helped PEM after a direct 6 mg start caused a massive crash; weekly…
-
Almost bed-bound with long COVID, much better after radical rest and celecoxib
A retired tech lawyer in her sixties developed long COVID after her third infection, with PEM, fever and exhaustion leaving her almost bed-bound. About four months of radical rest, celecoxib, low-dose Celexa and a probiotic helped; Celexa plus cautious 5-HTP…
-
Malnourished with long COVID gut problems; keto diet and vitamin C helped, then relapse
They had long COVID since January 2020; gut problems — bloating, constipation, poor motility — left them malnourished, 48 pounds lighter and weak. Ketamine microdosing, ayahuasca, amanita and TCM herbs gave temporary remissions, lost to overdoing things or a…
-
Not enough detail to draw a path
Severe MCAS and POTS after COVID vaccination, partly better with Adderall and midodrine
Sequoia 45416 became ill after COVID vaccination in 2021 with severe MCAS and POTS. In early 2022 she was hospitalised with severe hyponatraemia, delirium and fainting. Adderall, verapamil, midodrine and rapamycin eased brain fog and helped her be upright…