Bedridden much of 2024 with long COVID, now somewhat better on low-histamine diet and LDN

Condition: Long COVID
At worst: Severe (mostly bedbound)
Ill before improving or writing: 4.5 years
Last post: May 2026

In their words

Condition: Long COVIDI have had symptoms since the summer of 2021 In context ↗
At worst: SevereI crashed at the end of 2023 and was bedridden in 2024 but was able to step out for groceries. In context ↗
Now: Somewhat betterBetter than where I was in 2023 but I wish it was even better. ... I do not consider myself even at 50% of my former self.
Began after: a vaccinationI am Pf injured 4 years and 4 months.

Read from 103 of their posts and comments; links to the 48 this page draws on

Summary

Summit 95696 has had long COVID since the summer of 2021, with PEM, fatigue, brain fog and insomnia, and MCAS from late 2023. Bedridden for much of 2024, they improved on a strict low-histamine diet, vitamin D, rest and low-dose naltrexone, reaching 7,000 steps a day and part-time office work. They still rate themselves at about 30% of their former self and rely on a relative for all chores.

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What they tried

What they credit

vit D+ K· Helped low histamine diet· Helped Bone broth· Helped LDN· Helped · main mold removal and air purifiers· Helped rest· Helped sauna bed· Helped · main electrolytes· Helped pacing· Helped

Also tried

Their words about each treatment

vit D+ K · HelpedAre you taking vit D+ K? It helps me so I am not bed bound all the time. In context ↗
low histamine diet · HelpedThe diet helps me with brain fog too. In context ↗
acceptance of symptoms · HelpedThis approach works for me from time to time, and it is really stunning when it does because my symptoms are definitely not imaginary. In context ↗
time · HelpedI had this for a year and a half. It went away on its own. In context ↗
acupuncture · Not saidI tried acupuncture once per month for probably a year and stopped. Too much money. In context ↗
antihistamine meds (Unisom, Allegra) · HelpedAnti-histamines definitely help me. In context ↗
Quecertin · Not saidI just stopped Quecertin because I am taking a lot of supplements in liquid form and they all have sugar which is elevating my heart rate. In context ↗
nicotine patches · HelpedI tried nicotine patches. They definitely work. I just do not want to use them every day. In context ↗
LDN · HelpedI find it helpful. I am still working up to 4.5 mg but I saw improvement the very first time when I took just a few specks. In context ↗
gou teng · HelpedIt takes me awhile to fall asleep but if I drink gou teng tea with about 10-15 granules, I fall asleep super fast, probably no more than 30 mins. In context ↗
Visible · Not saidI checked my Visible score for today — it’s at 3, but I feel fairly energetic. In context ↗
mold removal and air purifiers · HelpedAir purifiers helped me a lot last year. Now I do not seem to need them. In context ↗
rest · HelpedSauna bed almost daily + LDN + rest, rest, rest is helping me. In context ↗
B12 injections · Not saidShe also prescribed B12 injections for my fatigue. I think LDN fixed the fatigue at least to some extent, so may be I should not take the rest of the B12 injections. In context ↗
Propranolol · WorseThe blood pressure medication makes me feel nauseous, so I do not really like taking it. In context ↗
TCM herbs · WorseI tried TCM. Many of the herbs are high histamine and I do not react well to them :( In context ↗
St John's Wort · Helped a lotIt saved me and made me a believer in the healing power of herbs. In context ↗
DAO · Not saidMCAS - i am low histamine diet and take allergy medications from time to time and DAO. In context ↗
sauna bed · HelpedBut the sauna - which I thought would be another wasted money— has been amazing so far. In context ↗
NIR panel · WorseI think the NIR panel gives me brain for and with repeated use, it can become ar dementia level. In context ↗
Mickel Therapy · HelpedI learned about Mickel Therapy and gave it the main website and then asked it to help me. So far, this seems good 🤞 In context ↗
Claude (AI assistant) · HelpedI tried Claude and it helped me manage my symptoms. In context ↗
lumbrokinase-type supplement · WorseI have something similar but have chest pressure when I take it. In context ↗
magnesium glycinate and zinc · Not saidI also take magnesium glycinate and zinc at night. In context ↗
electrolytes · HelpedThe rapid high rate for me seems to be managed with electrolytes. If the electrolytes do not have enough salt, I add a bit more. In context ↗
creatine · WorseI reacted extremely poorly to it. Wish I never tried it and I did a small dose. In context ↗
Prempro · HelpedExperimenting w doc supervision with micro dose of Prempro. I felt quite energized, but it seems I need to take it at a dosage where I have a mild headache. In context ↗
ear plugs and AirPods · HelpedI sleep with ear plugs. The best decision ever! It definitely helps me to calm down. In context ↗
meditation and breathwork · No changeMeditating did not and does not work for me. In context ↗
5 min work out daily · WorseWhen I tried to do a 5 min work out daily, I got at dementia level brain fog. In context ↗
pacing · HelpedIn my experience if I keep very tight energy expenditure budget, my body gets to accumulate a bit more energy. In context ↗
anti-depressants · WorseAnti-depressants made me depressed. In context ↗
Modafinil / armodafinil · Not saidI did not like it. Made me even more nervous. LDN is much better for me. In context ↗
Progesterone (Prometrium, Utrogestan) · Not saidI felt quite energized, but it seems I need to take it at a dosage where I have a mild headache. In context ↗
Prunes and prune juice · Not saidI tried prunes in the past but have awful cramps In context ↗

Approaches: POTS medication · Alternative therapies · Diet · Mould avoidance · Pacing · Radical rest · Supplements

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 2.4 years 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
summer 2021	long COVID symptoms beganI have had symptoms since the summer of 2021 but I developed MCAS around October 2023. In context ↗	Not stated
end of 2023	crashed and was bedridden through 2024I crashed at the end of 2023 and was bedridden in 2024 but was able to step out for groceries. In context ↗	Severe
2025-04-13	less fatigue, able to work at a desk instead of in bedI am able to work at my desk for hours instead of working in bed. In context ↗	Moderate	Low-histamine diet
2025-06-10	crashed after two weeks of not pacing and doing physical workI tried not pacing and was pretty good for 2 weeks. I did a lot of physical work. Now for more than a week, I am mostly bed bound. In context ↗	Severe
2025-08-02	walking 7,000 steps a day and back at work part of the weekI can do 7000 steps every day on flat surface, only one flight of steps down and up, minimal talking throughout the day. In context ↗	Moderate	Low-dose naltrexone
2025-09-22	plateau, working two or three days a week but dependent on help at homeI would say I am at 30% because I am dependent on others help. In context ↗	Moderate	Low-dose naltrexone
2026-05-22	still ill nearly five years on, kept going by LDN, antihistamines and a relative's helpthese almost 5 years have been absolute hell In context ↗	Moderate

Adverse events

Mold avoidance / CIRS protocol“The next two days I was nauseous and dizzy and the brain fog was worsening.” In context ↗ Made symptoms worse
“developing toxicity from vitamin in take” In context ↗ Other
Low-dose naltrexone“I can relax deeply, weirdly while having higher than my normal resting heart rate, the side effect I am hoping will dissipate.” In context ↗ Heart rhythm problems
Propranolol (Inderal)“I took 1/5 of 10 mg and did not like the nausea at all.” In context ↗ Side effects
Salt, electrolytes and fluids“LMNT definitely raises my blood pressure.” In context ↗ Side effects
Chinese herbal medicine (TCM formulas)“Many of the herbs are high histamine and I do not react well to them :(” In context ↗ Made symptoms worse
Modafinil / armodafinil“I did not like it. Made me even more nervous. LDN is much better for me.” In context ↗ Side effects
Fibrinolytic enzymes (unspecified)“I have something similar but have chest pressure when I take it.” In context ↗ Side effects
Low-dose naltrexone“Every time I increased the dosage, I could not sleep that well.” In context ↗ Insomnia from treatment
Red and near-infrared light therapy“I splurged on NIR panel and it makes me worse” In context ↗ Made symptoms worse
“within 30 mins of drinking any tea, I have the feeling that I am about to d*e” In context ↗ Made symptoms worse
Creatine“I reacted extremely poorly to it. Wish I never tried it and I did a small dose.” In context ↗ Made symptoms worse
Fexofenadine (Allegra)“It helped but gave me constipation so I give it up.” In context ↗ Gut side effects
Progesterone (Prometrium, Utrogestan), Estrogen (estradiol)“I felt quite energized, but it seems I need to take it at a dosage where I have a mild headache.” In context ↗ Side effects
Prunes and prune juice“I tried prunes in the past but have awful cramps” In context ↗ Gut side effects
Antidepressants (unspecified)“Anti-depressants made me depressed.” In context ↗ Mood or psychiatric effects

Symptoms mentioned

Anxiety & low mood Brain fog Gut problems Headaches & migraine Light & noise sensitivity Loss of smell or taste Mast cell (MCAS) & allergies Muscle weakness Neuropathy & tingling POTS & dysautonomia Pain & fibromyalgia Post-exertional malaise Sleep problems Temperature regulation Tinnitus

Their words about their symptoms

Post-exertional malaiseThe only persistent one has been exercise intolerance, PEM, fatigue. In context ↗
Brain fogBrainfog will come strong if I do not pace. In context ↗
POTS & dysautonomiaGot POTS and I think it is almost gone. In context ↗
Mast cell (MCAS) & allergiesI developed MCAS and still have it. In context ↗
Sleep problemsthe current occasional sleepless nights feel different from my 2021 severe and debilitating insomnia In context ↗
Pain & fibromyalgiajoint pains, stiffness In context ↗
Headaches & migrainesauerkraut causes vicious migranes In context ↗
Gut problemsI get the nausea and just feeling off and wanting to lie down. In context ↗
Light & noise sensitivityWhen I am outside, it is noisy and overstimulating, so I always I have my airpods. In context ↗
Muscle weaknessI am so out of shape and my muscles are super weak. In context ↗
Neuropathy & tinglingneedles on skin sensation In context ↗
Anxiety & low moodI have tremendous anxiety around health which prevents me from looking at my blood tests In context ↗
Loss of smell or tasteYes! I had that from time to time last year. Still do but less frequently. In context ↗
Temperature regulationcold intolerance In context ↗

Bedridden much of 2024 with long COVID, now somewhat better on low-histamine diet and LDN

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

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What they credit

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Symptoms mentioned

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