Close to bed-bound with ME/CFS, now somewhat better with valacyclovir and Abilify
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 7 years
- Last post
- Sep 2024
In their words
- Condition: ME/CFS
I’ve had ME since 2017, recently worsened by COVID.
In context ↗ - At worst: Severe
I went from severe ME to mild ME in a few years until I got COVID.
In context ↗ - Now: Somewhat better
The effects are kind of waning now, but it’s still a lot better than without it.
In context ↗ - Began after: a bacterial or tick-borne infection
I suspect my ME came from Lyme, but it could’ve also come from a really bad flu I had years before COVID was a thing.
Read from 54 of their posts and comments; links to the 31 this page draws on
Summary
Rain 50925 has had ME/CFS since 2017, was close to bed-bound and improved to mild over a few years with pacing. COVID in October 2022 brought them back to severe, and a Tdap booster in late 2023 made them steadily worse. Valacyclovir improved their baseline by around 20-30% with less brain fog and better exertion tolerance, though the effect waned; low-dose Abilify and famotidine helped a little.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Helped
I got better over time the more I paced. I’m no longer bed-bound and can do most things in moderation.
In context ↗ - cutting out high carb foods · Not said
I once lost 50 pounds just by cutting out high carb foods
In context ↗ - cannabis · Helped
It helps my pain a lot.
In context ↗ - low dose Abilify · Helped
a low dose of Abilify has slightly helped my energy levels
In context ↗ - ivermectin · Helped
The IVM helped with both.
In context ↗ - famotidine · Helped
Low dose Abilify and famotidine have kind of helped a bit
In context ↗ - Effexor (venlafaxine) · Helped
It works great for my depression and anxiety, but it’s done very little to help with fatigue from ME/CFS.
In context ↗ - ginger ale · Helped
Ginger ale sometimes takes the edge off
In context ↗ - Vyvanse · Helped
It really helps with the brain fog that comes with ME/CFS
In context ↗ - dexamethasone · Helped
Dexamethasone always makes me feel great.
In context ↗ - mindfulness · Helped
mindfulness is a great tool and it’s helped me through my worst lows
In context ↗ - caffeine · Worse
Sometimes caffeine helps my brain fog but it always makes me crash really bad after it wears off.
In context ↗ - compression socks · Helped
I bought compression socks for my POTS symptoms and noticed it had a positive effect on my brain fog as well.
In context ↗ - Zofran (ondansetron) · Helped
ginger ale and a Zofran Rx really helped
In context ↗ - deep breathing, yoga, meditation · No change
deep breathing, yoga, meditation, and “finding a hobby” would cure me of ME/CFS (not shockingly, those things haven’t helped me at all)
In context ↗ - clonazepam · Helped
the only thing that’s helped me personally was clonazepam because panic attacks are a huge part of mine (taken only as needed)
In context ↗ - vitamin D supplements · Helped
Supplementing vitamin D and magnesium actually help me a lot.
In context ↗ - beta blockers · Worse
I get weird psychological effects from beta blockers too.
In context ↗ - therapy · Worse
I can hardly attend therapy sessions because it gives me bad PEM.
In context ↗ - valacyclovir · Helped
Started taking valacyclovir like 4 days ago. It has reduced my brain fog a lot and has increased my tolerance for exertion.
In context ↗ - antihistamines · Helped
They mildly improve some things for me but not nearly enough.
In context ↗ - Tetanus / Tdap vaccine · Worse
After that I feel like my condition has been steadily going downhill, and have even been experiencing symptoms I haven’t felt before.
In context ↗
Approaches: Antivirals · Pacing · 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. The first step with a time is 5.5 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2017 | ME/CFS began; suspected Lyme or an earlier bad fluI’ve had ME since 2017In context ↗ | Not stated | |
| — | close to bed-bound, in bed most of the dayI used to be close to being bed-bound (I was in bed the majority of the day)In context ↗ | Severe | |
| by 2022 | improved from severe to mild over a few years and lived independentlyI went from severe ME to mild ME in a few years until I got COVIDIn context ↗ | Mild | Pacing and the energy envelope |
| October 2022 | back down to severe after COVID infectionwhen I got COVID it brought me back down to severeIn context ↗ | Severe | |
| October 2023 | steadily downhill after a Tdap booster, with new symptomsAfter that I feel like my condition has been steadily going downhillIn context ↗ | Severe | |
| January 2024 | brain fog and exertion tolerance improved on valacyclovirIt has reduced my brain fog a lot and has increased my tolerance for exertion.In context ↗ | Moderate | Valtrex / valacyclovir |
| 2024-04-29 | still improved on valacyclovir, though its effect is waningThe thing that has helped my ME the most has been valacyclovirIn context ↗ | Moderate | Valtrex / valacyclovir |
Adverse events
- Caffeine and coffee“Sometimes caffeine helps my brain fog but it always makes me crash really bad after it wears off.” In context ↗ Made symptoms worse
- Tetanus / Tdap vaccine“After that I feel like my condition has been steadily going downhill, and have even been experiencing symptoms I haven’t felt before.” In context ↗ Made symptoms worse
- Beta-blockers (unspecified)“I get weird psychological effects from beta blockers too.” In context ↗ Mood or psychiatric effects
- CBT and psychotherapy“I can hardly attend therapy sessions because it gives me bad PEM.” In context ↗ Made symptoms worse
- Valtrex / valacyclovir“Had some anxiety and headaches when I first started but that’s about it. They’ve gone away now.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I can hardly attend therapy sessions because it gives me bad PEM.
In context ↗ - Brain fog
It has reduced my brain fog a lot and has increased my tolerance for exertion.
In context ↗ - POTS & dysautonomia
I bought compression socks for my POTS symptoms
In context ↗ - Mast cell (MCAS) & allergies
I think the cause of mine is more MCAS related so I’m not sure.
In context ↗ - Pain & fibromyalgia
Mostly fatigue and joint pain. The IVM helped with both.
In context ↗ - Sleep problems
It definitely helps me with sleep and that burning brain feeling.
In context ↗ - Gut problems
I experienced this for at least two months post infection. It eventually went away on its own
In context ↗ - Anxiety & low mood
It works great for my depression and anxiety
In context ↗ - Loss of smell or taste
The only symptoms I have are no smell/taste and a mild cough.
In context ↗
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