Long COVID
Severe → relapsedIll 4 years before improving or writing
Long COVID with severe PEM and POTS after a career-ending relapse, still worse again
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Aug 2026
In their words
- At worst: Severe
I became severely weak from being in bed so much from severe fatigue from cfs and long covid
In context ↗ - Now: Relapsed
I just began recovering from LC 2 months ago after 4 years! ... I did well for weeks then suddenly doing minimum movement caused a huge flare.
- Began after: a vaccination
I got the covid vaccine in Jan 2021 and by March 2021 I was ill and my cfs reactivated.
In context ↗
Read from 35 of their posts and comments; links to the 24 this page draws on
Summary
Orchid 21313 had CFS from 2009, in remission until a COVID vaccine in January 2021 reactivated it, adding severe PEM, POTS, Hashimoto's and brain fog and forcing them to quit their career. They reported slight improvement in 2023 while taking daily vitamins, and blood pressure medication eased weakness in 2025. After four years they reported starting to feel better, but later described little improvement and worse PEM. Sirolimus was stopped after six weeks because of peripheral neuropathy or high B6.
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What they tried
What they credit
myers cocktail ivs· Helped a lot · wore offglutathione· Helped a lot · wore offIv iron· Helped a lot · wore offcompounded cortisol· Helped · wore offT3· Helped · wore offpregnenolone· Helped · wore offLyme treatment· Helped · wore offantiviral for EBV· Helped · wore offmultivitamin· Helpediron· Helpedvit d· HelpedNAC· Helpedmelatonin· Helpedcalcium· Helpedbromelain, curcumin and boswellia complex· Helpedbromelain, curcumin and boswellia complex· Helpedbromelain, curcumin and boswellia complex· HelpedKessler post-Covid recovery and reconditioning program· HelpedAmantadine· Helped · main
Also tried
alternative medicine· Helped a lot · wore offcompounded serotonin· Helped · wore offstimulant· Helpedmidodrine· Helped · wore offLevocetirizine and Allegra· HelpedLevocetirizine and Allegra· Helpedguaifenesin· No changeSalt Stick electrolytes· No changecutting out foods· No changeL-glutamine· No changeSNRI and antidepressants· No changebeta blocker· WorseMestinon· WorseSirolimus· Worseartemisinin· Not saidCoQ10· Not said5-HTP· Not saidSAM-e· Not saidaloe juice· Not saidL-tryptophan· Not saidOrencia· Not saidParoxetine (Paxil)· Not said
Their words about each treatment
- alternative medicine · Helped a lot
I was successfully treated for CFS 10 years ago by alternative medicine
In context ↗ - myers cocktail ivs · Helped a lot
I got better 10 years ago after getting lots of myers cocktail ivs, also glutathione, and Iv iron.
In context ↗ - compounded cortisol · Helped
I was also put on compounded cortisol, T3, serotonin, and pregnenolone.
In context ↗ - compounded serotonin · Helped
put me on compounded serotonin and it did go up and my mood was better
In context ↗ - Lyme treatment · Helped
I was treated and did feel better.
In context ↗ - antiviral for EBV · Helped
I also was on an antiviral for a year to bring down the ebv load.
In context ↗ - guaifenesin · No change
I tried it back when I was diagnosed in 2003 but it didn't seem to help.
In context ↗ - artemisinin · Not said
diagnosed me with cfs had me on artemisinin
In context ↗ - multivitamin · Helped
I make sure I take a multi
In context ↗ - iron · Helped
iron (I get anemia)
In context ↗ - NAC · Helped
It helps the cognitive issues a little bit.
In context ↗ - calcium · Helped
calcium (osteopenia)
In context ↗ - bromelain, curcumin and boswellia complex · Helped
a complex with bromelain, curcumin, and boswellia
In context ↗ - Kessler post-Covid recovery and reconditioning program · Helped
I highly recommend attending their recovery and reconditioning program.
In context ↗ - CoQ10 · Not said
I was already taking these.
In context ↗ - Salt Stick electrolytes · No change
The salt stick capsules he recommended don't seem to be helping as much as I thought.
In context ↗ - 5-HTP · Not said
I already take 5htp on a supplement it says 10 mg not sure of the normal dosage.
In context ↗ - SAM-e · Not said
I also take Sam-e for joints and mood.
In context ↗ - cutting out foods · No change
Cutting out foods, using l glutamine, you name it
In context ↗ - aloe juice · Not said
I've used aloe juice.
In context ↗ - L-tryptophan · Not said
I even take l tryptophan which is a precursor to serotonin.
In context ↗ - beta blocker · Worse
I said no to the beta blocker as I've been given this in the past and the low Bp got worse
In context ↗ - Orencia · Not said
I also take Orencia for RA.
In context ↗ - SNRI and antidepressants · No change
taken all of them except for one of the new ones
In context ↗ - stimulant · Helped
I take a stimulant also even before I was chronically ill for ADHD
In context ↗ - midodrine · Helped
I take midodrine for pots but it has started to wear off recently.
In context ↗ - Mestinon · Worse
it caused a bad flare of my Ibs
In context ↗ - Levocetirizine and Allegra · Helped
my allergist increased my Levocetirizine and added Allegra in the morning and so far I only get slight itching
In context ↗ - Amantadine · Helped
it is really helping
In context ↗ - Sirolimus · Worse
I developed peripheral neuropathy once on 4mg
In context ↗ - Paroxetine (Paxil) · Not said
I have in my early twenties I tried to come off Paxil and I had to cut extended release tabs in half cause I was having such bad withdrawals.
In context ↗
Approaches: Antibiotics · Antivirals · Hormones & thyroid · Other drugs and medicines · Physiotherapy and rehab · 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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| March 2021 | Ill after COVID vaccine; CFS reactivatedI got the covid vaccine in Jan 2021 and by March 2021 I was ill and my cfs reactivated.In context ↗ | Moderate | |
| August 2023 | On disability and unable to do anythingI am on disability but it's at a point where I can't do anything.In context ↗ | Severe | |
| September 2023 | Slight improvement after taking daily vitamins consistentlyI have to say that I've had symptoms for about 2 years now and it's only been the past month or so where there's been some improvement.In context ↗ | Severe | |
| 2024 | Huge flare during post-COVID reconditioning programme at KesslerI did well for weeks then suddenly doing minimum movement caused a huge flare.In context ↗ | Severe | |
| November 2024 | Began recovering after four yearsI just began recovering from LC 2 months ago after 4 years!In context ↗ | Moderate | |
| February 2025 | Still ill four years after the vaccineI am still ill 4 years laterIn context ↗ | Moderate | |
| March 2025 | Blood pressure medication stopped the severe weakness and bp dropsAfter getting medication for my blood pressure, I haven't experienced the weakness or huge drops in bp and heart rate anymore.In context ↗ | Moderate | Midodrine |
| June 2025 | Midodrine benefit wore off and PEM worsenedI take midodrine for pots but it has started to wear off recently.In context ↗ | Moderate | Midodrine |
| September 2025 | Amantadine enabled a bit more activityIt suck’s because it is really helping but around 4 pm there’s a huge drop off and I get very tired.In context ↗ | Moderate | Amantadine |
| August 2026 | Stopped low-dose sirolimus after peripheral neuropathy; still only little improvementUnfortunately I developed peripheral neuropathy once on 4mg it's either that or my high b6 level.In context ↗ | Moderate | Rapamycin / sirolimus |
Adverse events
- Beta-blockers (unspecified)“I said no to the beta blocker as I've been given this in the past and the low Bp got worse which then didn't help the high heart rate.” In context ↗ Low blood pressure or fainting
- Amantadine“I'm only taking it once a day the goal is 2x a day but it causes orthostatic hypotension. So my bp is 90/60 until I can get it up more they can't increase it.” In context ↗ Low blood pressure or fainting
- Mestinon / pyridostigmine“I’ve had to go up very slowly as it’s aggravating my ibs.” In context ↗ Gut side effects
- Mestinon / pyridostigmine“I did a trial of Mestonin for POTS. But it caused a bad flare of my Ibs.” In context ↗ Gut side effects
- Rapamycin / sirolimus“Unfortunately I developed peripheral neuropathy once on 4mg it's either that or my high b6 level. So I had to stop it. I was only on it for 6 weeks.” In context ↗ Nerve pain
- Graded rehab and self-made programmes“I did go to rehab for Post covid reconditioning as it helps lots. I did well for weeks then suddenly doing minimum movement caused a huge flare.” In context ↗ Made symptoms worse
- Paroxetine (Paxil)“I have in my early twenties I tried to come off Paxil and I had to cut extended release tabs in half cause I was having such bad withdrawals.” In context ↗ Withdrawal problems
Symptoms mentioned
Anxiety & low moodBreathlessnessGut problemsHair lossHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaSleep problems
Their words about their symptoms
- POTS & dysautonomia
he said I met the criteria for pots
In context ↗ - Mast cell (MCAS) & allergies
I was having a mast cell episode of some sort but my allergist increased my Levocetirizine and added Allegra in the morning and so far I only get slight itching.
In context ↗ - Sleep problems
I sleep a lot when it’s active.
In context ↗ - Pain & fibromyalgia
I have had fibromyalgia and cfs since 2000s and RA since 2017.
In context ↗ - Gut problems
For a period my ibsc got better then it went back to constant again.
In context ↗ - Breathlessness
getting out of breath, and feel sick bending over
In context ↗ - Heart symptoms & palpitations
My heart rate goes from around 75 at rest to 115 standing.
In context ↗ - Muscle weakness
I became severely weak from being in bed so much from severe fatigue from cfs and long covid.
In context ↗ - Neuropathy & tingling
Unfortunately I developed peripheral neuropathy once on 4mg it's either that or my high b6 level.
In context ↗ - Anxiety & low mood
Which explains why my mood has been very up and down.
In context ↗ - Hair loss
a recurrence of Alopecia areata
In context ↗
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