Long COVID for over five years, now much better with maraviroc and rapamycin
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- Mar 2026
In their words
- Condition: Long COVID
In my 5 year+ LC journey
In context ↗ - At worst: Severe
in the past a good day was a walk of 200 yards ... worst case scenario was being physically unable to fully stand up (and having to drop back into bed)
- Now: Much better
I continue to improve ... It is still a problem, but less handicapping than it used to be.
- Began after: COVID
In my 5 year+ LC journey
In context ↗
Summary
A Reddit user with long COVID for more than five years described cycles of good and bad periods, with leg weakness and crashes, and good days once limited to a 200-yard walk. Maraviroc and daily rapamycin (1 mg, later 2 mg) were the only two drugs they felt clearly helped, raising the high points of their cycles and easing crashes. On good days they could now walk two to three miles, though leg weakness and crashes remained.
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What they tried
What they credit
Also tried
Their words about each treatment
- Maraviroc · Helped a lot
I had a similar experience with Maraviroc (300mg, 2x/day).
In context ↗ - Rapamycin · Helped a lot
I started Rapamycin 16 months ago at a dose of 1mg/day.
In context ↗ - low-dose naltrexone · Not said
Other things that I started early on, like low-dose naltrexone, I still am unclear about
In context ↗
Approaches: Antivirals · Other drugs and medicines
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| ~2020-2021 (5 year+ before March 2026) | long COVID onsetIn my 5 year+ LC journey, there have been only two medications that stand as having clearly helped me.In context ↗ | Not stated | |
| earlier in the illness | good days limited to a 200-yard walk; sometimes unable to fully stand upworst case scenario was being physically unable to fully stand up (and having to drop back into bed)In context ↗ | Severe | |
| — | less frequent, less severe leg weaknessI had a similar experience with Maraviroc (300mg, 2x/day)In context ↗ | Not stated | Maraviroc (Selzentry) |
| about 16 months before March 2026 | broader symptom improvement, higher good days, milder crashesI started Rapamycin 16 months ago at a dose of 1mg/day. I had very noticeable improvement in a broad range of symptoms over the next 3-4 months.In context ↗ | Mild | Rapamycin / sirolimus |
| about 8 months before March 2026 | dose doubled, further improvementAbout eight months ago, my Rapamycin dose was doubled to 2mg/day. Again I noticed improvementsIn context ↗ | Mild | Rapamycin / sirolimus |
| March 2026 | good days now include a 2-3 mile brisk walk, but leg weakness and crashes remainOn a good day (during the present year), I can go out for a 2-3 three mile brisk walk (hooray!)In context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Muscle weakness
I feel the weakness most profoundly in my quads.
In context ↗ - Post-exertional malaise
when I overdid it, the crashes, the punishment, was less severe
In context ↗ - Brain fog
Mental/cognitive symptoms improved - but not as much as the physical symptoms.
In context ↗
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