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Long COVID Severe → relapsedIll 2 years before improving or writing

Mostly bed-bound with long COVID, improved on diet and nicotine patches, then relapsed

Condition
Long COVID
At worst
Severe (mostly bedbound)
Ill before improving or writing
2 years
Last post
Oct 2025
In their words
  • Condition: Long COVIDI was learning web development to pursue a career change before getting hit with LC back in October. In context ↗
  • At worst: SevereI was severe for a few months, but I'm slowly improving--I know how lucky I am. In context ↗
  • Now: Relapsedi've gone from the mild end of mild (hardwon thru years of pacing, self advocacy and research) to the severe end of moderate after 10 days of antibiotics. In context ↗
  • Began after: COVIDThen BAM! Long COVID. After my first COVID infection!! In context ↗
Read from 171 of their posts and comments; links to the 61 this page draws on

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Summary

Bramble 47780 fell ill with long COVID in October 2023 and spent months mostly bed- or couch-bound. A low-histamine elimination diet, nicotine patches, low-dose naltrexone, antihistamines and supplements gradually improved them, though they said they were not fully recovered.

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Asking aboutBramble 47780’s story

What they tried

Their words about each treatment
  • low histamine diet · Helped a lotIt's been a game-changer for me. In context ↗
  • elimination diet · HelpedElimination diet helped me identify triggers and avoid them. In context ↗
  • H1 antihistamines (Claritin/loratadine, Benadryl/diphenhydramine) · HelpedBenadryl helps me, too! In context ↗
  • famotidine / Pepcid · HelpedClaritin and pepcid (H1 and H2 blocker) really help keep the symptoms from the higher-histamine meal under control. In context ↗
  • Vitamin C (ascorbic acid powder) · HelpedVitamin C the moment I notice a reaction calms it down for me. In context ↗
  • Quercetin with bromelain · HelpedIt helps a LOT with the food intolerances and the symptoms they cause In context ↗
  • nicotine patches · Helped a lotNicotine patches really really reeeeeally help me. In context ↗
  • low-dose naltrexone (LDN) · Helped a lotIt’s been really really really fucking helpful for me In context ↗
  • propranolol then bisoprolol · HelpedI was on propranolol, it helped but the side effects were intolerable. In context ↗
  • CPAP · Helpedhas been improving since I started using a CPAP In context ↗
  • iron (oral and infusion) · Helped a lotIron infusions saved my life In context ↗
  • melatonin · Helpedmelatonin helps me, i take 3mg sublingual right before bed. In context ↗
  • lactoferrin · HelpedVitamin C with lactoferrin and iron bisglycinate gives me a nice lil boost. In context ↗
  • creatine · Helpedhow much creatine was helping me In context ↗
  • CoQ10 (ubiquinone) · HelpedCoQ10 is one of them! In context ↗
  • high-dose B1 · Helpedhigh doses of B1 (400mg+) In context ↗
  • D-Ribose · Helpeda small dose of D-Ribose (it really helps In context ↗
  • B vitamins / B complex (B-right) · Helpedsince I started supplementing with heme iron and a B complex In context ↗
  • copper and zinc · Not saidcopper and zinc In context ↗
  • magnesium · HelpedMagnesium supplementation makes them go away In context ↗
  • histamine-degrading probiotics · Helpedhistamine-degrading probiotics In context ↗
  • galactooligosaccharide prebiotic · Helpeda galactooligosaccharide prebiotic (which feeds histamine-degrading bacteria) have really helped me! In context ↗
  • peppermint tea / peppermint oil (IBgard) · HelpedPeppermint oil has been working really well for me for gut motility stuff. In context ↗
  • ginger capsules · Helpedginger capsules ... have really helped me! In context ↗
  • betaine HCl · HelpedI took it for a while and it did help In context ↗
  • Gas-X · Helpedgas-x, claritin and famotidine have helped me with similar issues In context ↗
  • CBD · HelpedCBD also really helps In context ↗
  • pacing · Helpedhardwon thru years of pacing In context ↗
  • therapy · Helpedworking with a therapist to rule out a psychosomatic cause In context ↗
  • EMDR · HelpedHad my first EMDR (fancy therapy, good for PTSD) session on Friday, and didn’t crash after!! In context ↗
  • testosterone HRT · Helped a lotHormone replacement therapy actually fixed a lot of my health related issues. In context ↗
  • phosphate supplements · Helpedneeded phosphate supplements In context ↗
  • sulfamethoxazole and trimethoprim · Much worsethe antibiotics seem to have caused a significant relapse In context ↗
  • air purifier · HelpedI got an air purifier and it’s been super helpful for allergies!!! In context ↗
  • sniffing an alcohol pad · HelpedSniffing an alcohol pad takes the edge off for me In context ↗
  • ice pack on breastbone · HelpedHave you tried putting an ice pack on your breastbone? ... It really helps me In context ↗
  • physiotherapy · HelpedI had to work with a physiotherapist to make it go away In context ↗
  • breathing exercises · Helpednowadays I can do them for a bit, as long as I don't overdo it they are helpful In context ↗
  • reading easier books · HelpedReading stuff way below my previous reading level really helped me. In context ↗
  • uncooked cornstarch in water · Helpeduncooked cornstarch diluted in water has been really helpful for my nocturnal hypoglycemia In context ↗
  • massage around clavicles, pecs and upper arm · HelpedI find massaging around my clavicles, pecs and upper arm to be helpful. In context ↗
  • Intuitive Eating book · HelpedA book called Intuitive Eating ... has really helped me In context ↗
  • screen brightness, grayscale, dark mode and reader view · Helpedreducing brightness, changing my screen to grayscale, using dark mode and "reader view" all help. In context ↗
  • smaller portions · HelpedSmaller portions, figuring out my triggers and avoiding them In context ↗
  • psilocybin · Helpedpsilocybin has been very helpful for me In context ↗

Approaches: H1 antihistamines · H2 blockers · Diet · Pacing · Sex hormones · Supplements

Their path

Very severeSevereModerateMildNear normalRecovered6 mo12 mo18 mo2 y

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
WhenWhat happenedWhere they wereAfter
October 2023long COVID after first COVID infectionThen BAM! Long COVID. After my first COVID infection!! In context ↗Not stated
early 2024severe for months, bed- or couch-bound and unable to do anythingI was severe for a few months In context ↗Severe
February 2024nicotine patches eased PEM, brain fog, POTS and sensory problemsAfter the first week, I was kicking myself for not getting on them sooner. In context ↗ModerateNicotine patches
June 2024low-dose naltrexone at 1.3 mg: fewer food reactions, more energy, less brain fogat 1.3mg my food reactions are way more manageable, I have more energy, my brain fog is better In context ↗ModerateLow-dose naltrexone
1 August 2024food intolerances worsening, losing safe foodsMine were getting better for a bit, and now they’re getting worse, I’m losing foods again. In context ↗Moderate
26 August 2024doing things that used to cause crashes without crashingrecently I’ve been doing things that would have for sure put me in a nasty crash, and I have not been crashing. In context ↗Moderate
spring 2025able to get up more once on a beta-blockerFor me, once I started a beta-blocker. In context ↗Mild
mid 2025moments of feeling almost normalI was having moments of feeling almost normal before this. Those are gone. In context ↗Mild
27 September 2025relapse after a 10-day course of antibiotics for a UTIAs expected, the antibiotics seem to have caused a significant relapse. In context ↗Moderate
7 October 2025down to the severe end of moderate after antibioticsi've gone from the mild end of mild (hardwon thru years of pacing, self advocacy and research) to the severe end of moderate after 10 days of antibiotics. In context ↗Moderate

Adverse events

Symptoms mentioned

Their words about their symptoms
  • Post-exertional malaisethey really help me be able to do more without crashing and shorten the duration and intensity of PEM, brain fog, and POTS. In context ↗
  • Brain fogI'm back to getting tired really easily, extreme brain fog, irritability, vision issues, muscle twitches In context ↗
  • Mast cell (MCAS) & allergiesI don’t have a formal MCAS diagnosis, but have a lot of food intolerances and MCAS-like symptoms. In context ↗
  • Sleep problemsI used to wake up every few hours feeling like I can’t breathe, heart racing. In context ↗
  • Pain & fibromyalgiathat then evolve into hives, bloating, joint pain, brain fog, headache In context ↗
  • Headaches & migrainebloating, joint pain, brain fog, headache In context ↗
  • Gut problemsI went from being in severe pain and looking like I ate several balloons after every meal to being slightly bloated In context ↗
  • Light & noise sensitivityMy sensory system is out of whack, so I’m over sensitive to smell and light In context ↗
  • Heart symptoms & palpitationsthis sudden feeling of rage, racing heart, popping joints In context ↗
  • Neuropathy & tinglingI had a bunch of nerve issues (pinched nerves, pain, numbness, tingling) on my neck a few years ago ... They’ve come back with a vengeance post-LC. In context ↗
  • Anxiety & low moodthe long covid anxiety is unlike anything I’ve ever dealt with ... It's eased up a lot for me with time
  • Vision problemsextreme brain fog, irritability, vision issues, muscle twitches In context ↗
  • Hair lossWhen I had it, it really affected my hair. Made it thinner, sparser and more gray. In context ↗

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