Long COVID
Moderate → near normalIll 15 months before improving or writingNeeds ongoing treatment
Long COVID with POTS, now nearly back to normal after radical rest and antihistamines
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 15 months
- Last post
- Oct 2024
In their words
- Condition: Long COVID
Long covid symptoms started two weeks after Pfizer booster without a positive covid test or symptoms previous to that.
In context ↗ - At worst: Moderate
I was in terrible shape for months
In context ↗ - Now: Near normal
Consistently feeling good, eating totally back to normal.
In context ↗ - Began after: a vaccination
Long covid symptoms started two weeks after Pfizer booster without a positive covid test or symptoms previous to that.
In context ↗
Read from 82 of their posts and comments; links to the 38 this page draws on
- Sep 2022
- Sep 2022
- Oct 2023
- Sep 2022
- Nov 2022
- Sep 2022
- Sep 2022
- Sep 2022
- Sep 2022
- Dec 2022
- Oct 2022
- Oct 2022
- Sep 2022
- Sep 2022
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- Oct 2022
- Sep 2022
- Nov 2022
- Oct 2022
- Oct 2022
- Dec 2022
- Oct 2022
- Nov 2022
- Dec 2022
- Aug 2023
- Oct 2024
- Nov 2022
- Oct 2022
- Oct 2022
- Oct 2022
- Sep 2022
- Nov 2022
- Sep 2022
- Sep 2022
- Sep 2022
- Nov 2022
- Oct 2022
Summary
Swan 81634 fell ill in December 2021, two weeks after a third Pfizer dose, with anxiety, nausea, insomnia, tachycardia, POTS symptoms and mast-cell and EMF sensitivity; the first six months were worst. She credits radical rest, a low-histamine diet, antihistamines, DAO enzyme and the LP299V probiotic, reaching 90-100% by about ten months and eating normally by late 2023, though she still sought MCAS control in 2024.
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What they tried
What they credit
DAO enzyme (NaturDAO)· Helped a lot · mainprobiotic LP299V (Nature's Bounty Probiotic GX / Jarrow)· Helped a lot · mainacupuncture· Helped a lotextreme rest / bed rest· Helped a lotlow histamine diet· Helpedzyrtec· Helpedquercetin· Helpedvitamin C· Helpedvit D3/K2· Helpedmagnesium· Helpedhydration, electrolytes and compression stockings· Helpedhydration, electrolytes and compression stockings· Helpedintermittent fasting and longer fasts· Helpeddigestive enzymes· HelpedEMDR· HelpedSpring Forest Qigong· Helpedpacing· Helpedstrict sleep schedule· Helpedavoiding environmental triggers· Helped
Also tried
Hydroxizine· HelpedXanax· Helpedcold showers· Helpedvagus nerve exercises· HelpedtVNS clip· HelpedEpsom salt baths· Helpedred-light therapy / IR-NIR lamp· Helpedear candling· Helpedbreathing and guided meditations· Helpedgabapentin· No changecromolyn sodium· No changeMelatonin· Worseintense exercise· Much worsepepcid ac· Not saidzoloft· Not saidlysine· Not saidblackseed oil· Not saidcod liver oil· Not saidmultivitamin· Not saidGoodbelly Immune juice· Not saidmilk thistle· Not saidmegaIgG2000 immunoglobulins· Not saidPomegranate extract· Not saidresveracel· Not saidgallixer tonic· Not saidIbuprofen with paracetamol (taken together)· Not said
Their words about each treatment
- DAO enzyme (NaturDAO) · Helped a lot
DAO enzyme has been helpful for reducing the severity of the monthly flare ups
In context ↗ - probiotic LP299V (Nature's Bounty Probiotic GX / Jarrow) · Helped a lot
It was the first big jump in improvement for me
In context ↗ - low histamine diet · Helped
Low histamine diet has been helpful.
In context ↗ - zyrtec · Helped
Antihistamines helped bring down anxiety, but the addition of the DAO really seemed to help.
In context ↗ - pepcid ac · Not said
I did zyrtec and pepcid ac. YMMV, though, so some have better luck with Allegra.
In context ↗ - Hydroxizine · Helped
Hydroxizine was the only thing that helped me sleep at night when I was at my worst.
In context ↗ - quercetin · Helped
other mast cell stabilizers like vit C, D3/K2, magnesium, quercetin have been helpful for me
In context ↗ - vitamin C · Helped
Acerola initially, better for mast cells.
In context ↗ - vit D3/K2 · Helped
vitamin C, D3/K2 double standard dose (I was very low)
In context ↗ - magnesium · Helped
vit C, D3/K2, magnesium, quercetin have been helpful for me
In context ↗ - hydration, electrolytes and compression stockings · Helped
hydration and electrolytes, and compression stockings, thigh high or waist high, really helped
In context ↗ - Melatonin · Worse
Melatonin, for example, gave me tachycardia and panic symptoms.
In context ↗ - gabapentin · No change
I was given gabapentin to sleep, and it didn't work at all.
In context ↗ - Xanax · Helped
Occasionally, if it was just too much, a 1/4 of Xanax.
In context ↗ - intense exercise · Much worse
trying to exhaust myself with intense exercise. I ended up manic and insomniac with neuropathy and buzzing burning extremities
In context ↗ - cold showers · Helped
Cold showers and vagus nerve exercises also very helpful
In context ↗ - vagus nerve exercises · Helped
Vagus nerve exercises to stimulate the parasympathetic nerve also helps.
In context ↗ - tVNS clip · Helped
tVNS clip has been helpful
In context ↗ - zoloft · Not said
I am currently taking 12.5 zoloft (not sure if helpful at thus point, but not willing to quit it yet)
In context ↗ - blackseed oil · Not said
blackseed oil and cod liver oil mid day
In context ↗ - multivitamin · Not said
including a daily multivitamin
In context ↗ - intermittent fasting and longer fasts · Helped
I think being consistent with 16/8 helped me push to 24 and then 36 hours more easily.
In context ↗ - Epsom salt baths · Helped
I also found Epsom salt baths and red-light therapy very soothing and reduced severity of symptoms
In context ↗ - red-light therapy / IR-NIR lamp · Helped
I also thought IR/NIR lamp was helpful
In context ↗ - Goodbelly Immune juice · Not said
I also do Goodbelly Immune juice.
In context ↗ - digestive enzymes · Helped
DAO enzyme, digestive enzymes, probiotic LP299V
In context ↗ - ear candling · Helped
I did some ear candling, it helped a bit
In context ↗ - acupuncture · Helped a lot
Acupuncture has been hugely beneficial for me and many others
In context ↗ - EMDR · Helped
EMDR was so helpful for me, I hope you find the same
In context ↗ - Spring Forest Qigong · Helped
Qigong to move lymph (Spring Forest Qigong is what I got
In context ↗ - milk thistle · Not said
Boosters: milk thistle (low dose)
In context ↗ - megaIgG2000 immunoglobulins · Not said
megaIgG2000 immunoglobulins
In context ↗ - Pomegranate extract · Not said
Pomegranate extract
In context ↗ - cromolyn sodium · No change
I've been on cromolyn sodium for the last 4 or 5 months now. Negligible improvement.
In context ↗ - pacing · Helped
first and foremost pacing (read up on chronic fatigue)
In context ↗ - extreme rest / bed rest · Helped a lot
I needed to rest more than I have ever rested in my life to start clawing back my life
In context ↗ - breathing and guided meditations · Helped
Breathing and guided meditations can help, too.
In context ↗ - strict sleep schedule · Helped
enforcement of a strict sleep schedule
In context ↗ - avoiding environmental triggers · Helped
no electronics, exercise, sun, etc, when I was at my worst
In context ↗ - Ibuprofen with paracetamol (taken together) · Not said
I can't take a tylenol or advil without liver pain, so that's still not working well
In context ↗
Approaches: H1 antihistamines · POTS medication · Alternative therapies · Antihistamines & MCAS · Diet · Mind-body practices · Pacing · Radical rest · Supplements · Trauma & somatic work
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 3 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 |
|---|---|---|---|
| December 2021 | long COVID began two weeks after third Pfizer doseLong covid symptoms started two weeks after Pfizer booster without a positive covid test or symptoms previous to that.In context ↗ | Not stated | |
| first six months, 2022 | worst period: anxiety, insomnia, tachycardia, POTS, EMF and heat sensitivityFirst 6 months were the worst, then it all improved slowly from there.In context ↗ | Moderate | |
| mid 2022 | slow improvement while resting and lowering histamineBetter as I was addressing the histamine issues. lots or resting, initially.In context ↗ | Mild | Pacing and the energy envelope |
| July 2022 | suddenly functional again at 85-95%I was in terrible shape for months, and then about two months ago I was very suddenly functional again, average of 85-95%.In context ↗ | Near normal | |
| 2022-09-27 | first day with no long COVID symptomsJust had first day of no symptoms of long covid at all.In context ↗ | Near normal | Probiotics and fermented foods |
| 2022-11-05 | period-linked mast cell flareI found hydroxizine can at least let me sleep when I'm flared up (like I am currently).In context ↗ | Mild | |
| 2023-10-15 | consistently good, eating normally againConsistently feeling good, eating totally back to normal.In context ↗ | Near normal | |
| 2024-10-28 | still working on MCAS control; cromolyn gave negligible improvementI've been on cromolyn sodium for the last 4 or 5 months now.In context ↗ | Near normal |
Adverse events
- Melatonin“Melatonin, for example, gave me tachycardia and panic symptoms.” In context ↗ Heart rhythm problems
- Hydroxyzine (Atarax, Vistaril)“When this all started I'd take the hydroxizine every 4 hours as prescribed and that was NOT good ... Yes, some dry mouth, but a trade off for full night of sleep!” In context ↗ Side effects
- Probiotics and fermented foods“Can initially cause a flare, but the benefits outweigh the costs imo. ... There's an initial herx reaction as you get die off of the bad guys” Herx / die-off reaction
- Ibuprofen with paracetamol (taken together)“I can't take a tylenol or advil without liver pain, so that's still not working well” In context ↗ Liver or kidney problems
- Acupuncture“it can flare you up after sessions but it's worth it, IMO” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Post-exertional malaise
trying to exhaust myself with intense exercise. I ended up manic and insomniac with neuropathy and buzzing burning extremities and yet another round of tachycardia.
In context ↗ - POTS & dysautonomia
I had POTS symptoms and very bad tachycardia for a couple months.
In context ↗ - Mast cell (MCAS) & allergies
I was having triggers to environmental stimuli, like sun, heat, exertion, EMF, etc, more so than foods.
In context ↗ - Sleep problems
When my insomnia (which I'd never had before) was at its worst - felt like my brain would NOT shut off to sleep
In context ↗ - Headaches & migraine
What I can still feel mildly on occasion is head/chest pressure
In context ↗ - Light & noise sensitivity
I've had times where I reacted to sunlight, or I reacted to the car's computer with sinus pressure headaches only while in the presence of the trigger.
In context ↗ - Heart symptoms & palpitations
I no longer feel it pounding out of my chest, the weird buzzing sensation, tachycardia issues, or problems with exercise.
In context ↗ - Neuropathy & tingling
It helped me with everything, from right side numbness to insomnia and gall bladder fat absorption issues.
In context ↗ - Anxiety & low mood
I felt like it attacked my vagus nerve. I couldn't calm down, I was having panic attacks, I couldn't sleep.
In context ↗ - Tinnitus
Tinnitus flares
In context ↗ - Temperature regulation
I couldn't sweat AT ALL for a couple / few months
In context ↗
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