Long COVID
Severe → relapsedIll 4 years before improving or writingNeeds ongoing treatment
Long COVID, unable to work, improved 80% then relapsed after stopping triple therapy
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
several doctors” have already diagnosed me with long COVID / post-viral illness / ME/CFS
In context ↗ - At worst: Severe
I’m able to take short walks (like 20 minutes abs max) but definitely not every day.
In context ↗ - Now: Relapsed
Felt like 85% for like 6 weeks right around my 1Y mark (last fall) but relapsed for mysterious reasons
In context ↗ - Began after: COVID
At which point I caught COVID Sep 2022 and haven’t been the same since
In context ↗
Read from 71 of their posts and comments; links to the 33 this page draws on
Summary
A New York finance worker with long COVID since September 2022, following an earlier Moderna booster reaction from which she had largely recovered, she has been unable to work and on long-term disability with fatigue, PEM, brain fog, anhedonia and feverishness. HBOT ($7k), triple anticoagulant therapy, LDN, rapamycin and MCAS drugs gave little lasting benefit; an 80% improvement faded about two months after she stopped triple therapy. Prozac, Adderall and pacing helped most, and Paxlovid gave a brief 2026 lift.
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What they tried
What they credit
Also tried
Effexor· HelpedAdderall XR· Helpedmeditation / breathing exercises· HelpedWellbutrin· Helpedbuspirone (Buspar)· HelpedCBT / therapy· HelpedXclear nasal irrigation· HelpedGabapentin· HelpedClonazepam· Helpedself-nurturing rest· HelpedDextromorphan (DXM)· Helpedhard-chamber HBOT· No changeLDN· No changeantihistamines· No changesteroids· No changeketotifen· No changeCromolyn sodium· No changemethylphenidate· WorseTirzepatide (Mounjaro, Zepbound)· Worsefamotidine· Not saidSirolimus (rapamune)· Not saidlisdexamphetamine (Vyvanse)· Not saidHRT· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- IV antibiotics · Helped
Did two rounds of IV antibiotics over a couple of years. Thought I got better but kept relapsing.
In context ↗ - Effexor · Helped
I have used in past with success but had some withdrawals when I stopped
In context ↗ - Adderall XR · Helped
I take Adderall XR and it leaves me able to do basic things like shower, prepare easy meals
In context ↗ - meditation / breathing exercises · Helped
Breathing exercises / meditation does help
In context ↗ - Prozac · Helped
Best help comes from Prozac, and Adderall, which I get from my therapist.
In context ↗ - Wellbutrin · Helped
may increase or add low dose of Wellbutrin which I’ve had success with in past
In context ↗ - buspirone (Buspar) · Helped
I also started buspirone (Buspar) for anxiety and I think it’s had mild antidepressant effects (and minimal side effects)
In context ↗ - CBT / therapy · Helped
CBT has been a huge help for me, specifically because my mental symptoms were almost as severe as my physical ones
In context ↗ - hard-chamber HBOT · No change
At first I thought it helped my neuro symptoms and tried to go back to work. I lasted a month before going back on disability
In context ↗ - famotidine · Not said
Honestly if I’ve been a bit constipated (the famotidine does that to me!) it happens more often than not.
In context ↗ - Triple Therapy with Dr Vaughn · Helped
I got a bit better (maybe 80%), decided to stop TT after 4 months, and two months later all my symptoms have begun coming back.
In context ↗ - LDN · No change
I’m taking LDN, triple therapy, sirolimus (rapamycin), Prozac, Wellbutrin and antihistamines
In context ↗ - Sirolimus (rapamune) · Not said
now trying Sirolimus (rapamune). Sadly nothing has done the trick yet.
In context ↗ - antihistamines · No change
I’ve done HBOT, antihistamines, steroids, triple therapy (blood thinners), LDN, ketotifen (for MCAS), Cromolyn sodium (also MCAS), now trying Sirolimus (rapamune).
In context ↗ - ketotifen · No change
LDN, ketotifen (for MCAS), Cromolyn sodium (also MCAS), now trying Sirolimus (rapamune). Sadly nothing has done the trick yet.
In context ↗ - Cromolyn sodium · No change
ketotifen (for MCAS), Cromolyn sodium (also MCAS), now trying Sirolimus (rapamune). Sadly nothing has done the trick yet.
In context ↗ - Xclear nasal irrigation · Helped
Meanwhile I have to use about 4 nasal sprays to not be miserable. Irrigate with Xclear twice a day etc
In context ↗ - pacing · Helped
Only pacing (avoid over-exertion) seems to help for me.
In context ↗ - Gabapentin · Helped
Gabapentin helps me, you would need a doctor’s Rx (at least here in my country USA)
In context ↗ - Clonazepam · Helped
0.5mg sublingual Clonazepam if that fight or flight is really horrible
In context ↗ - self-nurturing rest · Helped
Really nurture myself. Acknowledge that it’s not ME just something happening to me ... it really seems to help at least calm my nerves
In context ↗ - Dextromorphan (DXM) · Helped
Dextromorphan has been a game changer for me, I buy it OTC generic and it’s pretty cheap
In context ↗ - diluted Gatorade · Helped
I drink diluted regular Gatorade all day, at first bc it was easier to stay hydrated that way and then I just felt a bit better
In context ↗ - methylphenidate · Worse
It works a bit differently from methylphenidate, which I did not like as much/ had more side effects with
In context ↗ - lisdexamphetamine (Vyvanse) · Not said
lisdexamphetamine (called Vyvanse brand name here) is extended release which sometimes does “smooth out” the side effects (in my personal experience)
In context ↗ - HRT · Not said
I also recently started HRT (47F).
In context ↗ - Paxlovid · Helped a lot
I took Paxlovid and that stuff made me feel better than I had in months… maybe years. I’m so bummed it was temporary.
In context ↗ - COVID vaccination as treatment · Not said
Had vaccine injury from Moderna booster, wasn’t great but was still able work and recovered to about 85% in 5-6 months.
In context ↗ - Tirzepatide (Mounjaro, Zepbound) · Worse
any dose larger than 0.08mg made me feel worse
In context ↗
Approaches: POTS medication · SSRIs · Antibiotics · Anticoagulants · Antivirals · Pacing
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 |
|---|---|---|---|
| September 2022 | COVID infection; long COVID begins while still workingAt which point I caught COVID Sep 2022 and haven’t been the same sinceIn context ↗ | Mild | |
| early 2023 | returned to work after six weeks off and crashed badlyTook 6 weeks off around the holidays / New Year, then convinced myself I was better, went back to work and it was a disasterIn context ↗ | Moderate | |
| fall 2023 | about 85% for six weeks around the one-year markFelt like 85% for like 6 weeks right around my 1Y mark (last fall) but relapsed for mysterious reasonsIn context ↗ | Mild | Triple anticoagulant therapy |
| January 2024 | stopped triple therapy; symptoms returned over two monthsI got a bit better (maybe 80%), decided to stop TT after 4 months, and two months later all my symptoms have begun coming backIn context ↗ | Moderate | |
| February 2026 | three and a half years in, giving up on chasing experimental treatmentsI’m at the 3.5 year mark and it’s like my bright-siding of this bullshit has officially run out.In context ↗ | Severe | |
| October 2026 | recovered from a third infection and felt better on PaxlovidI feel a lot better than I have in monthsIn context ↗ | Moderate | Paxlovid / nirmatrelvir |
| October 2026 | Paxlovid benefit temporary; baseline still lowMy baseline doesn’t seem to be any lower post-infection, but it was already pretty low unfortunatelyIn context ↗ | Severe |
Adverse events
- COVID vaccination as treatment“Had vaccine injury from Moderna booster, wasn’t great but was still able work and recovered to about 85% in 5-6 months.” In context ↗ Other
- “It was hellish to go through, all I kept thinking was that I’m ready to die, because there is nothing left for me in this life.” In context ↗ Suicidal thoughts or attempt
- Famotidine (Pepcid)“Honestly if I’ve been a bit constipated (the famotidine does that to me!)” In context ↗ Gut side effects
- Triple anticoagulant therapy“I have been having this issue and it is worse than usual since I am now on blood-thinners” In context ↗ Other
- Amphetamine salts (Adderall)“you eventually have to “pay the piper” in the form of a mild crash” In context ↗ Made symptoms worse
- Tirzepatide (Mounjaro, Zepbound)“any dose larger than 0.08mg made me feel worse” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineMast cell (MCAS) & allergiesPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Post-exertional malaise
it’s become clear to me that cognitively engaging tasks actually seem to trigger PEM
In context ↗ - Brain fog
the brain fog and anhedonia are a bit better
In context ↗ - Mast cell (MCAS) & allergies
ketotifen (for MCAS), Cromolyn sodium (also MCAS)
In context ↗ - Headaches & migraine
wouldn’t be able to stand up or even move from migraine / nausea
In context ↗ - Gut problems
Honestly if I’ve been a bit constipated (the famotidine does that to me!)
In context ↗ - Anxiety & low mood
I was having very bad intrusive thoughts about dying / wanting to die / wanting it all to end
In context ↗ - Flu-like symptoms
Intense and disabling malaise like literally the worst sickness you can remember feeling ever
In context ↗ - Temperature regulation
I’ve had this ever since getting Lyme in 2016. It got better but then worse again with LC.
In context ↗
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