Housebound with ME/CFS after COVID, now somewhat better with l-lysine and Synthroid
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2.5 years
- Last post
- Mar 2023
In their words
- Condition: ME/CFS
I’ve had EBV induced CFS for 2 and a half years now.
In context ↗ - At worst: Moderate
It flared up my EBV bad and led me to be housebound.
In context ↗ - Now: Somewhat better
I feel a lot better already CFS wise after being on synthroid for a couple weeks.
In context ↗ - Began after: glandular fever or EBV
I got CFS symptoms as soon as EBV reactivated in me
In context ↗
Read from 10 of their posts and comments; links to the 7 this page draws on
Summary
Orchid 75605 has had EBV-induced CFS for two and a half years; mono-like symptoms return whenever they stop valacyclovir. A COVID infection in August 2022 left them housebound until l-lysine brought them back to baseline in about a week. Their thyroid labs later showed a TSH of 48, and a few weeks on 50mcg Synthroid left them feeling a lot better. One Pfizer vaccine, they say, worsened their CFS long term.
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What they tried
Also tried
Their words about each treatment
- valtrex · Helped
The virus starts replicating and I get very sick when I don’t take Valacyclovir.
In context ↗ - Pfizer vaccine · Worse
Only had one Pfizer vaccine because it fucked me up and worsened my cfs long term
In context ↗ - paxlovid · Helped
My fever was gone the next day but aches and increased PEM persisted for a month or so
In context ↗ - l-lysine · Helped
It pretty much got me back to baseline CFS before Covid. May have been a coincidence but I felt way better a few days after starting the supplement.
In context ↗ - NAC · Helped
now I’m responding to antiviral medication and NAC
In context ↗ - synthroid · Helped
I feel a lot better already CFS wise after being on synthroid for a couple weeks.
In context ↗
Approaches: Amino acids and carnitine · Antivirals · Supplements · Thyroid hormones
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 chart starts 23 months after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|---|
| 2020 | CFS symptoms began with EBV reactivationI got CFS symptoms as soon as EBV reactivated in meIn context ↗ | Not stated | |
| August 2022 | COVID infection flared EBV and left them houseboundIt flared up my EBV bad and led me to be housebound.In context ↗ | Moderate | |
| September 2022 | Back to pre-COVID CFS baseline after l-lysineIt pretty much got me back to baseline CFS before Covid.In context ↗ | Mild | Lysine |
| March 2023 | Felt a lot better CFS-wise on Synthroid for newly abnormal thyroid labsI feel a lot better already CFS wise after being on synthroid for a couple weeks.In context ↗ | Mild | Levothyroxine (Synthroid) |
Adverse events
- COVID vaccination as treatment“Only had one Pfizer vaccine because it fucked me up and worsened my cfs long term.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
aches and increased PEM persisted for a month or so
In context ↗ - Flu-like symptoms
I get full blown mono symptoms again when I don’t take it
In context ↗
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