Bedbound with severe ME/CFS and MCAS after long COVID, now somewhat better with pacing

Condition

Long COVID

At worst

Severe (mostly bedbound)

Ill before improving or writing

1 year

Last post

Oct 2026

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What they tried

Approaches: Benzodiazepines · Diet · Mind-body practices · Other drugs and medicines

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.

Adverse events

• Probiotics and fermented foods“Most probiotics give me bloating, flatulence, and diarrhea.” In context ↗ Gut side effects
• Loratadine (Claritin)“I get very jittery with even a children’s Claritin.” In context ↗ Side effects
• Loratadine (Claritin)“I think antihistamines are anticholinergic, therefore causing constipation, moreover that usually is a side-effect i experience.” In context ↗ Gut side effects
• Loratadine (Claritin)“Antihistamines make me dysphoric.” In context ↗ Mood or psychiatric effects
• Famotidine (Pepcid)“Pepcid makes me dysphoric” In context ↗ Mood or psychiatric effects
• Creatine“4 days of 2.5-5 mg of Creatine made me feel like I was hypercaffeinated” In context ↗ Side effects
• Baicalein and quercetin“3 days of Quercetin and i developed anxiety.” In context ↗ Side effects
• Fluticasone nasal spray (Flonase, Avamys)“I’ve been taking a Flonase sensimist nasal spray but the congestion is getting a worse and triggering insomnia and panic attacks.” In context ↗ Made symptoms worse
• “Dymista and Neti pot worsened it.” In context ↗ Made symptoms worse
• Nasal saline rinses and sprays (neti pot)“Dymista and Neti pot worsened it.” In context ↗ Made symptoms worse
• “CBD (wyld brand) makes me feel high for two hours and then I feel groggy and sick for hours” In context ↗ Side effects
• “Loved it till I bought a potent one that gave me severe gastritis.” In context ↗ Gut side effects
• Alprazolam (Xanax)“I have insomnia the night I don’t take it and a miserable nonfunctional day after that.” In context ↗ Withdrawal problems
• Low-dose naltrexone“I tried LDN at 0.05 mg and had three days of brain fog, mild headache and body aches and I stopped.” In context ↗ Side effects
• Low-dose naltrexone“Tried 0.05 mg /day of LDN w unpleasant side effects a week ago. ( muscle aches and increased weakness , worsened nasal congestion )” In context ↗ Made symptoms worse
• Low-dose naltrexone“I started at 0.1 mg and had side-effects of brain fog, and headache which were new symptoms for me.” In context ↗ Side effects
• Low-dose naltrexone“I’m having side effects at 1 and 0.1 micrograms ( using serial dilution) and wondering how low I should go.” In context ↗ Side effects
• Escitalopram (Lexapro)“I decided to start low-dose Lexapro (2.5 mg) and the first dose I am already feeling resurgence of SFN (prickling burning) which was being well controlled by Gabapentin.” In context ↗ Made symptoms worse
• Escitalopram (Lexapro)“I tried a really low dose of Lexapro which gave me nausea and histamine release (skin prickling) on the first day itself” In context ↗ Side effects
• Buspirone (Buspar), Escitalopram (Lexapro)“Also got side effects w 2.5 mg Lexapro and 1.25 mg Buspar.” In context ↗ Side effects
• Ketotifen (Zaditen)“Can someone explain to me what these NIGHT time spikes upto 135 are? ... The only change is taking 0.05 mg Ketotifen in the morning for three days now.” In context ↗ Heart rhythm problems
• Cromolyn (Gastrocrom, Nalcrom), Ketotifen (Zaditen)“Third night I had restless sleep (w possible adrenaline dumps) and had coat hanger pain or PEM the next (fourth) day.” In context ↗ Made symptoms worse
• Ketotifen (Zaditen)“I also have mild brain zaps and sedation for a few hours right after Ketotifen.” In context ↗ Side effects
• Cromolyn (Gastrocrom, Nalcrom), Ketotifen (Zaditen)“Within 4 hours I had a bad headache, and head and nasal pressure.” In context ↗ Side effects
• Cromolyn (Gastrocrom, Nalcrom), Ketotifen (Zaditen)“I tried with a drop for a week and it messed up my sleep and my HRV fell…” In context ↗ Insomnia from treatment
• Cromolyn (Gastrocrom, Nalcrom), Ketotifen (Zaditen)“I tried taking 1 drop of 0.05 mg/ml so literally 0.002 mg every third day, compounded liquid, and it gave me nasal congestion, head pressure and insomnia. I tried for 2 weeks.” In context ↗ Side effects
• Ketotifen (Zaditen)“I have tried onboarding Ketotifen twice and both times it caused mast cell flares” In context ↗ Autoimmune or inflammatory flare
• Celecoxib (Celebrex)“I took the Celebrex for 4 days for a foot injury but had to d/c due to gastritis.” In context ↗ Gut side effects
• Bromelain“I think I have slow COMT genes and can’t handle Bromelain (esp after covid)” In context ↗ Side effects
• Tirzepatide (Mounjaro, Zepbound)“I just tried microdosing Zep 0.05 mg and got a mast cell flare with allodynia .” In context ↗ Autoimmune or inflammatory flare
• Mestinon / pyridostigmine“a low dose of Mestinon (18 mg, a higher dose ruins my sleep)” In context ↗ Insomnia from treatment
• Desloratadine (Clarinex, Aerius)“Just taking 5 mg of desloratidine and experiencing nasal dryness / stuffiness and slightly altered nasal sensation.” In context ↗ Side effects
• Symptom-tracking apps and wearables (Visible)“It gives me anxiety watching my HR in the red and watching my points disappear… I feel I’m going to cause myself to crash” In context ↗ Mood or psychiatric effects

Symptoms mentioned

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