Long COVID
Moderate → somewhat betterIll 19 months before improving or writingNeeds ongoing treatment
Long COVID: headaches, brain fog and PEM, somewhat better after diet and nicotine patches
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 19 months
- Last post
- Nov 2023
In their words
- Condition: Long COVID
I've been long hauling for over 3 months now (M20)
In context ↗ - At worst: Moderate
I can manage a 15 minute short walk before my brain fog and dpdr goes nuts
In context ↗ - Now: Somewhat better
doing better now but still far from healthy
In context ↗ - Began after: COVID
This pain reappeared after my infection in April 2022
Read from 82 of their posts and comments; links to the 38 this page draws on
- Jul 2022
- Jan 2023
- Oct 2023
- Jul 2022
- Oct 2022
- Aug 2022
- Sep 2022
- Sep 2022
- Sep 2022
- Feb 2023
- Dec 2022
- Mar 2023
- Jan 2023
- Dec 2022
- Feb 2023
- Jan 2023
- Feb 2023
- Apr 2023
- Nov 2023
- Mar 2023
- Dec 2022
- Aug 2023
- Jul 2023
- Mar 2023
- Mar 2023
- Aug 2022
- Feb 2023
- Feb 2023
- Feb 2023
- May 2023
- Feb 2023
- Mar 2023
- May 2023
- Oct 2022
- Dec 2022
- Apr 2023
- May 2023
- Dec 2022
Summary
Sandpiper 14167 was a man in his early 20s who developed long COVID after an April 2022 infection. From August to September 2022 he was worst, with daily headaches, brain fog, dizziness, limb pain and PEM; later he could manage only short walks. Low-carb and carnivore diets, fasting, acupuncture, nicotine patches and nervous-system work eased several symptoms, but fatigue and PEM persisted. He later reported rifaximin for SIBO made his long COVID 10x worse.
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What they tried
What they credit
Ketogenic / carnivore / zero-carb diet· Helped a lotKetogenic / carnivore / zero-carb diet· Helped a lotStrict low histamine diet (keto / carnivore)· Helped a lot · mainMeditation and Wim Hof breathing· HelpedAggressive rest· HelpedCold showers· HelpedIntermittent fasting· HelpedProlonged fasting· Helped · mainAcupuncture· HelpedNeuroplasticity exercises / Pain Free You· Helped
Also tried
Garlic· HelpedMelatonin· HelpedLion's mane mushroom· HelpedNatto (nattokinase)· HelpedPycnogenol· HelpedNicotine patches· HelpedMicrodosing psilocybin· HelpedHigh-dose thiamine / TTFD· HelpedVitamins B and C· No changeVitamin D· No changeMagnesium· No changeLavender· No changeNatural anti-inflammatory medicine· No changeIV vitamin C· No changeGrapeseed oil and oil of oregano· WorseLactoferrin· WorseProbiotics· WorseRifaximin· Much worseStrengthening exercises· Not saidPhysiotherapy· Not saidL-glutamine· Not saidMint and ginger· Not saidLoratadine· Not saidKetotifen· Not saidButyrate· Not said
Their words about each treatment
- Vitamins B and C · No change
Ive tried Vitamins B, C, D, Lavender, magnesium and some natural anti-inflammatory meds.
In context ↗ - Natural anti-inflammatory medicine · No change
I'm taking vitamins, natural anti inflammatory medicine, lavender-based anti-anxiety pills
In context ↗ - Strengthening exercises · Not said
started doing strengthening exercises again
In context ↗ - Meditation and Wim Hof breathing · Helped
meditation and cold showers, both of which seem to have helped as well
In context ↗ - Physiotherapy · Not said
Im seeing a physiotherapist now.
In context ↗ - Garlic · Helped
Started eating 2 cloves every day and I see a bit of relief in fatigue.
In context ↗ - Melatonin · Helped
That is usually when I take my melatonin pills.
In context ↗ - Lion's mane mushroom · Helped
Ive started taking it 2 weeks ago.
In context ↗ - Aggressive rest · Helped
mostly thanks to aggresive rest and diet
In context ↗ - Ketogenic / carnivore / zero-carb diet · Helped a lot
got rid of headaches, brain fog, body aches and helps a bit w energy
In context ↗ - Strict low histamine diet (keto / carnivore) · Helped a lot
mainly thanks to a strict low histamine diet (keto / carnivore), natto and fasting
In context ↗ - Cold showers · Helped
cold showers, wim hof breathing, meditation
In context ↗ - Intermittent fasting · Helped
IF + prolonged fasts definitely helped me
In context ↗ - Prolonged fasting · Helped
prolonged fasting is about the only thing that im sure helps me personally.
In context ↗ - Acupuncture · Helped
i had 1 session of acupuncture and felt better for a couple days after
In context ↗ - Natto (nattokinase) · Helped
I'm taking natto religiously.
In context ↗ - L-glutamine · Not said
I'm already taking L-glutamine, mint and ginger to help the gut.
In context ↗ - Grapeseed oil and oil of oregano · Worse
i immediately spiral into deep depression with extreme fatigue
In context ↗ - Loratadine · Not said
I was on loratadine and ketotifen
In context ↗ - Pycnogenol · Helped
I've been taking pycnogenol for just like 1 week right now
In context ↗ - Lactoferrin · Worse
flares up my body pains.
In context ↗ - Rifaximin · Much worse
rifaximin completely did me in and made my long covid 10x worse
In context ↗ - Nicotine patches · Helped
pretty significant improvement in muscle pain / weakness
In context ↗ - Microdosing psilocybin · Helped
slightly increased energy and less brain fog on dosing days
In context ↗ - Butyrate · Not said
adding butyrate alongside the patches
In context ↗ - High-dose thiamine / TTFD · Helped
first week of megadosing my motility returned immediately
In context ↗ - Probiotics · Worse
i have sibo so i dont tolerate probiotics
In context ↗ - IV vitamin C · No change
used to crash me at the beginning of my long haul in september
In context ↗ - Neuroplasticity exercises / Pain Free You · Helped
started doing some neuroplasticity exercises and watching Pain Free You on youtube
In context ↗
Approaches: Alternative therapies · Brain retraining · Diet · Mind-body practices · Radical rest
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 |
|---|---|---|---|
| April 2022 | COVID-19 infection and start of long COVIDI've been long hauling for over 3 months now (M20).In context ↗ | Mild | |
| August–September 2022 | Worst period with daily headaches, brain fog, dizziness, pain and PEMfrom august until end of september was the worst, i was really lowIn context ↗ | Moderate | |
| 2022-09-25 | Headaches became less frequent after aggressive rest and dietLast 2 or 3 weeks I only had a couple of episodes. I’d say it’s mostly thanks to aggresive rest and dietIn context ↗ | Moderate | |
| 2022-10-20 | Paleo-like diet, meditation, cold showers and acupuncture made headaches more tolerableswitching to a very clean, almost paleo-like diet ... meditation and cold showers, both of which seem to have helped as well.In context ↗ | Moderate | |
| 2022-12-05 | Carnivore diet brought more energy, less limb pain and clearer thinkingi feel i have a bit more energy. Leg and arm pain is much lower if not gone. Brain and mind feels clearerIn context ↗ | Moderate | |
| January 2023 | Rifaximin for SIBO worsened gut and overall symptomsthen took a course of rifaximin early january for sibo and it screwed up my microbiome so much it has made everything worseIn context ↗ | Moderate | |
| 2023-02-16 | Carnivore cleared headaches, brain fog and body aches but fatigue and PEM remainedgot rid of headaches, brain fog, body aches and helps a bit w energy. still fatigued as hell with PEM thoughIn context ↗ | Moderate | |
| 2023-03-21 | Nicotine patches improved muscle pain and weaknesspretty significant improvement in muscle pain / weaknessIn context ↗ | Mild | Nicotine patches |
| 2023-03-21 | Crashed after dental anesthesia and stomach fluon the 7th day I crashed due to a bad reaction to local anesthesia at the dentist and then caught a stomach flu the day after tooIn context ↗ | Mild | |
| 2023-03-28 | Neuroplasticity exercises reduced fibromyalgia pain in days; fatigue and PEM remainedi’m having fibromyalgia pains that got much better in just like 5 days once I started doing some neuroplasticity exercisesIn context ↗ | Mild | Sarno / TMS / somatic tracking / JournalSpeak |
| 2023-04-16 | Histamine intolerance reversed after about three months of carnivorealso reversed my histamine intolerance in ~3 mosIn context ↗ | Mild | |
| April 2023 | Smoke exposure triggered OI / mild POTSfollowing a smoke exposure a month ago, also OI / mild POTS dysautonomiaIn context ↗ | Mild | |
| 2023-05-17 | Nervous-system work reduced pain and PEMCouple of weeks ago I also started focusing heavily on the nervous system ... mainly a reduction in pain and PEMIn context ↗ | Mild | |
| 2023-10-08 | Reported doing better but still far from healthydoing better now but still far from healthyIn context ↗ | Mild | |
| 2023-11-05 | Reported rifaximin left long COVID much worse with new symptomsrifaximin completely did me in and made my long covid 10x worseIn context ↗ | Moderate |
Adverse events
- Garlic and garlic extract“I can feel I get more dizzy after eating my 2 cloves” In context ↗ Side effects
- Nattokinase“i think i had a herx again. tough to say as with anything, but it flares up my fatigue for a day or two iirc” In context ↗ Herx / die-off reaction
- Carnivore diet“I started feeling better a week in, then worse after 2 weeks. Turns out histamine in store-bought meats is a thing” In context ↗ Made symptoms worse
- Rifaximin / Xifaxan“then took a course of rifaximin early january for sibo and it screwed up my microbiome so much it has made everything worse” In context ↗ Made symptoms worse
- Rifaximin / Xifaxan“i didnt have any GI symptoms until after the antibiotics too - get a lot of bloating, gas and constipation now.” In context ↗ Gut side effects
- Rifaximin / Xifaxan“also decreased my stool quality and overall digestive flow ... it made me break out, my hair started falling out again and my fatigue increased” In context ↗ Side effects
- Rifaximin / Xifaxan“made me “crash hard” aka worsened fatigue and limb pain” In context ↗ Made symptoms worse
- Rifaximin / Xifaxan“beware, rifaximin completely did me in and made my long covid 10x worse with a lot of new symptoms appearing” In context ↗ Made symptoms worse
- Lactoferrin and colostrum“i seem to be flaring up from higher dose lactoferrin” In context ↗ Herx / die-off reaction
- Lactoferrin and colostrum“I find that I flare pretty hard with 750mg, get a slight fever and increase in joint pain, et cetera.” In context ↗ Herx / die-off reaction
- Lactoferrin and colostrum“flares up my body pains. in the beginning i thought thats a good thing / a herx but im not so sure anymore” In context ↗ Made symptoms worse
- Oregano oil“i immediately spiral into deep depression with extreme fatigue” In context ↗ Mood or psychiatric effects
- IV vitamins and Myers cocktail“used to crash me at the beginning of my long haul in september” In context ↗ Made symptoms worse
- “on the 7th day i crashed due to a bad reaction to local anesthesia at the dentist” In context ↗ Made symptoms worse
- Nicotine patches“i did try nic patches for a week 2 months ago but crashed at the end of the experiment” In context ↗ Made symptoms worse
- Intermittent fasting“my first refeed after a 24hr fast almost killed me last September ... i always flare upon refeed” Refeeding or deficiency problems
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
i’m still also dealing with fatigue and PEM
In context ↗ - Brain fog
got rid of headaches, brain fog, body aches and helps a bit w energy
In context ↗ - POTS & dysautonomia
also OI / mild POTS dysautonomia
In context ↗ - Mast cell (MCAS) & allergies
also reversed my histamine intolerance in ~3 mos
In context ↗ - Sleep problems
I have a pretty shifted circadian rhythm right now, so I go to sleep between 3-4am.
In context ↗ - Pain & fibromyalgia
I'm currently mostly struggling with PEM, pain in my limbs
In context ↗ - Headaches & migraine
Had daily headaches and migraines throughout the whole of september and october.
In context ↗ - Gut problems
i consider the digestive issues and a lack of motility as a downstream effect
In context ↗ - Breathlessness
fatigue, chest pain, shortness of breath, anxiety.
In context ↗ - Muscle weakness
pretty significant improvement in muscle pain / weakness
In context ↗ - Hair loss
my hair started falling out again
In context ↗
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