Long COVID
Moderate → much betterIll 4 years before improving or writingNeeds ongoing treatment
Long COVID with POTS, ME/CFS and fibromyalgia, now much better on medication
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 4 years
- Last post
- May 2026
In their words
- Condition: Long COVID
Nearly 2 years of LC later (with POTS, ME/CFS, fibromyalgia and a range of other weird symptoms)
In context ↗ - At worst: Moderate
When I was forced to stop work the 'fibromyalgia' pain sky-rocketed, my body started deconditioning and the POTS symptoms became unmanageable.
In context ↗ - Now: Much better
I'm currently nowhere near as severe as I was in terms of PEM and pain.
In context ↗ - Began after: COVID
I caught covid for the first time in March last year
In context ↗
Read from 35 of their posts and comments; links to the 27 this page draws on
Summary
Creek 61583, an Australian teacher, caught COVID-19 in March 2022 and developed POTS, ME/CFS, fibromyalgia and gastric dysmotility. Ivabradine and fludrocortisone in January 2023 eased their POTS and 'anxiety'; later Ajovy, amantadine and prokinetics helped migraines, cognition and digestion, and low-dose naltrexone improved overall functioning. They returned to full-time work with accommodations but still manage many symptoms with medication.
Ask Miruvor AI
What they tried
What they credit
ivabradine· Helped · mainfludrocortisone· Helpedantihistamine (loratidine, then switched)· Helped · wore offTENS machine for vagus nerve stimulation· Helpedmullein tea· HelpedH2 (Zantac or Pepcid AC)· HelpedLDN· Helped · mainbenfotiamine (B1)· HelpedPEA· Helpedluteolin· HelpedHistamine Support· Helpedtargeted pre and probiotics· Helped
Also tried
T4 and T3· HelpedT4 and T3· Helpedsupplements and chinese medicines· Helpedwhole foods diet cutting out gluten, dairy and soy· Helpedwhole foods diet cutting out gluten, dairy and soy· Helpedwhole foods diet cutting out gluten, dairy and soy· Helpedvyvanse· Helpedguanfacine· Helpedparacetamol· Helpedibuprofen· Helpedheavy duty antibiotics· Helpedantivirals (for shingles)· Helpedhand physio· Helpedcelebrex· Helpedwrist splints· Helpedsalt, fluids and compression· Helpedsurgery to remove a ruptured neck disc· HelpedAjovy· Helpedamantadine· Helpedmotilium· Helpedprucalopride· Helpedscleral buckle removal· Helpedmobic· No changepromethazine· WorseEndep· WorseCymbalta· Worsedrawing cream· Not saidcompression gloves, ice pack gloves, hand warmers, magnesium cream· Not saidBlastocystis treatment· Not saidHMO prebiotic with Bifidobacterium longum· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- T4 and T3 · Helped
Was doing good on T4 and 10mcg T3/day before I got covid.
In context ↗ - supplements and chinese medicines · Helped
Managed to get them down into a measurable level at one point with supplements and chinese medicines etc from an integrative doctor
In context ↗ - whole foods diet cutting out gluten, dairy and soy · Helped
would get my diet back under control (more whole foods/less processed foods, and cut out the gluten, dairy and soy
In context ↗ - vyvanse · Helped
I was already on vyvanse and guanfacine for ADHD before all of this
In context ↗ - guanfacine · Helped
I was already on guanfacine prior to getting covid/LC for ADHD. ... It's definitely still helping me
In context ↗ - paracetamol · Helped
I gave myself a few days of paracetamol, ibuprofen and massive amounts of rest to allow my body to deal with it which seemed to work.
In context ↗ - heavy duty antibiotics · Helped
Doctor put me on a course of heavy duty antibiotics which I took religiously. Heat and redness went away but the swelling stayed.
In context ↗ - drawing cream · Not said
tried a drawing cream just in case
In context ↗ - mobic · No change
Tried mobic (anti-inflammatory) but didn't help.
In context ↗ - antivirals (for shingles) · Helped
I ended up feeling pretty good while I was on them and definitely wondered whether staying on them longer might have helped with the long covid.
In context ↗ - hand physio · Helped
Saw a specialist hand physio and regained some motion but didn't seem to be addressing the underlying issue.
In context ↗ - celebrex · Helped
The celebrex really helped my fingers but it was messing with my stomach so I can't take it long term.
In context ↗ - compression gloves, ice pack gloves, hand warmers, magnesium cream · Not said
Tried compression gloves, ice pack gloves, hand warmers, magnesium cream etc etc.
In context ↗ - wrist splints · Helped
Wearing wrist splints helped with this.
In context ↗ - ivabradine · Helped
By the time I went back to my gp on Thursday, my heart rate was already back to a 'normal' resting heart rate
In context ↗ - fludrocortisone · Helped
Cardiologist prescribed ivabradine and fludrocortisone for POTS in January this year which have both been really useful.
In context ↗ - Blastocystis treatment · Not said
Everything was normal except for Blastocystis ... I did the treatment though
In context ↗ - HMO prebiotic with Bifidobacterium longum · Not said
taking a specific HMO as a prebiotic with Bifidobacterium longum to enourage growth of faecalibacterium prausnitzii
In context ↗ - salt, fluids and compression · Helped
drink 2 - 3 L of fluid each day with added electrolytes and salt tablets ... wear compression garments (including abdomen)
In context ↗ - antihistamine (loratidine, then switched) · Helped
I have to take an antihistamine daily now. Was taking loratidine but it seemed to stop working so I've switched to something different.
In context ↗ - promethazine · Worse
I have also used promethazine at times to help with sleep ... it can actually make gastric motility worse so I have since stopped.
In context ↗ - Endep · Worse
The Endep gave me severe psychological distress episodes within a week of titrating up a dose, every time.
In context ↗ - Cymbalta · Worse
Switched to Cymbalta because of that. ... Undid all the gains I'd made from other treatments
In context ↗ - TENS machine for vagus nerve stimulation · Helped
I've just started using a TENS machine to try and fast-track vagus nerve stimulation. ... Hand issues are now comparatively negligible and starting to use the machine also seems to have lifted the PEM.
- mullein tea · Helped
starting to drink mullein tea (which definitely helps me to clear mucus)
In context ↗ - H2 (Zantac or Pepcid AC) · Helped
And when I started taking a H1/H2 agonist combo.
In context ↗ - surgery to remove a ruptured neck disc · Helped
I had the surgery to remove the disc a month ago and woke up from the anaesthetic feeling more lucid than I have in years!
In context ↗ - Ajovy · Helped
Started on Ajovy a few months ago which is helping with the migraine type symptoms.
In context ↗ - amantadine · Helped
I started amantadine a week ago and I'm already seeing improvements with my cognitive functioning.
In context ↗ - motilium · Helped
Motilium has been helping with the upper gastric symptoms
In context ↗ - prucalopride · Helped
asked my gp to trial me on prucalopride for the lower GI tract which also worked
In context ↗ - LDN · Helped
My gp started me on LDN about a month and a half ago. So far it's been pretty positive with minimal side effects.
In context ↗ - scleral buckle removal · Helped
I just had to have a scleral buckle removed from my eye that was placed 37 years ago as part of corrective surgery for retinal detachment.
In context ↗ - benfotiamine (B1) · Helped
I've found that I'm really responsive to benfotiamine (B1)
In context ↗ - PEA · Helped
PEA with luteolin and quercitin
In context ↗ - Histamine Support · Helped
something called Histamine Support which is basically beef liver and kidney and supports DAO
In context ↗ - targeted pre and probiotics · Helped
I've found that I'm really responsive to ... and targeted pre and probiotics
In context ↗ - COVID vaccination as treatment · Not said
My second Pfizer shot triggered POTS symptoms that put me in emergency a week later with a suspected heart attack.
In context ↗
Approaches: H1 antihistamines · H2 blockers · POTS medication · Antihistamines & MCAS · Supplements · Vagus nerve stimulation
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 |
|---|---|---|---|
| March 2022 | caught COVID-19; whole-body pain, headache and fatigueI caught covid for the first time in March last yearIn context ↗ | Mild | |
| Day 8 after testing positive | first POTS/PEM crash walking upstairs at work; went to emergency with chest painI was trying to walk up the stairs and just felt like I had been hit by a truck.In context ↗ | Mild | |
| late November 2022 | forced to stop work; fibromyalgia pain and POTS became unmanageableWhen I was forced to stop work the 'fibromyalgia' pain sky-rocketed, my body started deconditioning and the POTS symptoms became unmanageable.In context ↗ | Moderate | |
| January 2023 | POTS diagnosed; started ivabradine and fludrocortisone, heart rate normalised within daysmy heart rate was already back to a 'normal' resting heart rateIn context ↗ | Moderate | Ivabradine |
| 2023 | Endep then Cymbalta for nerve pain caused distress and stopped her gut movingUndid all the gains I'd made from other treatments and I'm only just starting to get my gut moving naturally again now, nearly three years later.In context ↗ | Moderate | |
| December 2023 | finished first term of full-time work with school accommodationsI finished my first term of full-time work this yearIn context ↗ | Mild | |
| February 2025 | ruptured neck disc removed; long covid symptoms calmed once she protected her neckI found a lot of my long covid symptoms calmed significantly when I stopped ignoring the pain associated with my neck injury and actually started protecting my neck.In context ↗ | Mild | |
| May 2025 | Ajovy eased migraines; amantadine improved cognition; prokinetics for gutAnd I started amantadine a week ago and I'm already seeing improvements with my cognitive functioning.In context ↗ | Mild | Amantadine |
| October 2025 | low-dose naltrexone: waking naturally, digestion moving, feeling like herselfI think I just feel like myself again.In context ↗ | Mild | Low-dose naltrexone |
| May 2026 | cognitive and neurological gains; gut slowly recovering; still on many medicationsI have made significant gains in cognitive functioning and the neurological symptoms that were progressing in concerning ways are also turning around.In context ↗ | Mild |
Adverse events
- Celecoxib (Celebrex)“Celebrex helped a bit but not completely and gave me reflux.” In context ↗ Gut side effects
- Bifidobacterium infantis and targeted probiotic strains“Then I started having extreme mood problems that I knew had no trigger ... I've been wondering if it's related” In context ↗ Mood or psychiatric effects
- COVID vaccination as treatment“My second Pfizer shot triggered POTS symptoms that put me in emergency a week later with a suspected heart attack.” In context ↗ Autoimmune or inflammatory flare
- Low-dose naltrexone“Apart from a bit of nausea and a headache for maybe an hour after my first 4 or 5 doses” In context ↗ Side effects
- Low-dose naltrexone“I started at 0.5 mg and got up to about 3.5 mg when I started to get a whole heap of skin things flare up.” In context ↗ Side effects
- Amitriptyline (Elavil)“The Endep gave me severe psychological distress episodes within a week of titrating up a dose, every time.” In context ↗ Mood or psychiatric effects
- Amitriptyline (Elavil), Duloxetine (Cymbalta)“Apparently they can both impact gastric motility as I soon found out. Undid all the gains I'd made from other treatments” In context ↗ Gut side effects
- Guanfacine“if I forget to fill my script and miss a dose or two, the rebound blood pressure issues are insane” In context ↗ Withdrawal problems
- Promethazine (Phenergan)“found out that it can actually make gastric motility worse so I have since stopped” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
PEM kicked in pretty much straight away
In context ↗ - Brain fog
months to realise how bad my cognitive impairment was
In context ↗ - POTS & dysautonomia
POTS is still going strong.
In context ↗ - Mast cell (MCAS) & allergies
Nothing new, I get allergic reactions to lots of grasses and weeds.
In context ↗ - Sleep problems
after years of having to drag myself out of sleep
In context ↗ - Pain & fibromyalgia
the 'fibromyalgia' pain sky-rocketed
In context ↗ - Headaches & migraine
my long covid related headaches are actually migraines
In context ↗ - Gut problems
my peristalsis pretty much stopped working the way it should from my oesophagus all the way down
In context ↗ - Breathlessness
I had the tachycardia, chest pain/pressure, SOB, PEM, pre-syncope etc.
In context ↗ - Heart symptoms & palpitations
without the ridiculous tachycardia that I'd had for nearly a year by then
In context ↗ - Anxiety & low mood
episodes of extreme emotional distress with SI and intrusive thoughts
In context ↗ - Vision problems
My binocular vision disorder was getting rapidly worse.
In context ↗
Ask Miruvor AI
Similar stories
-
Not enough detail to draw a path
Long COVID with 23 hours a day in bed, now much better; glutathione and antihistamines helped
Sandpiper 78792 developed long COVID in early 2023 after a January 2022 COVID infection, spending 23 hours a day in bed with fatigue, brain fog and insomnia. Glutathione briefly cleared fatigue in January 2025; antihistamines helped sleep, while a…
-
Long COVID with brain fog, nearly back to normal after anti-candida diet and supplements
A 40-year-old woman became ill in January 2025 after a third COVID infection, with severe MCAS, brain fog and depression, later neuropathy and palpitations. A low-histamine diet and a large supplement stack stabilized her within a month around mid-2025;…
-
Housebound and often bedbound with long COVID, now much better on guanfacine with NAC
Maple 66690, a woman in her late 60s, fell ill with covid in March 2020 and became housebound and often bedbound over the past year with severe neurological and gut symptoms. Near-infrared light, guanfacine with NAC, and valacyclovir each helped; by late…
-
Bedbound with long COVID, now much better with LDN and a low-histamine diet
After a COVID infection in March 2022 they declined over 17 months from part-time chef work to fully bedbound from August 2023. LDN, ivabradine, low-histamine diet, physio and nervous-system/mind-body work brought slow gains, helped by moving in June 2024 to…