Long COVID
Moderate → much betterIll 5 years before improving or writingNeeds ongoing treatment
Long COVID with PEM, now 60% better on once-daily eating and nicotine patches
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 5 years
- Last post
- Apr 2026
In their words
- Condition: Long COVID
I've had LC for nearly 4 years
In context ↗ - At worst: Moderate
i had one good day in 10 months, now I'm having 3 /4 good days in a month
In context ↗ - Now: Much better
I'm probably about 60% better - which for me was bloody huge and I'm so happy.
In context ↗ - Began after: COVID
I had LC for a year after with all the usual symptoms.
In context ↗
Read from 30 of their posts and comments; links to the 22 this page draws on
Summary
Kite 34148, in the UK, had long COVID with PEM, brain fog, tinnitus, gut problems, insomnia and palpitations. After two years they were back at the gym, but a house move in July 2022 triggered a relapse; they later said they were worse than ever. Hyperbaric oxygen helped brain fog only briefly, and low-dose naltrexone's benefit faded. By late 2025, once-daily eating, nicotine patches and LDN left them about 60% better.
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What they tried
What they credit
Also tried
Oxygen therapy in a barometric chamber / hyperbaric oxygen therapy· Helped · wore offSSRIs (fluoxetine)· HelpedBeta blockers (propranolol)· HelpedWim Hof breathing exercises / breathing and meditation· No changeQuercetin· No changeNAC· No changeLow histamine diet· No changeVarious supplements· No changeKetotifen· No changeNovavax vaccine· WorseStronger antihistamines· WorseAcupuncture· Not saidMassage· Not saidCold water therapy· Not saidMeat only diet· Not saidHorse dewormer (ivermectin)· Not saidOrganic cider vinegar· Not saidCelery juice· Not saidKimchee· Not said
Their words about each treatment
- Gym exercise · Helped a lot
In February i started going to the gym again and improved a lot ... Felt great (never 100% as before but really really good).
In context ↗ - Oxygen therapy in a barometric chamber / hyperbaric oxygen therapy · Helped
I personally thought it really helped my brain fog initially, but seemed to wear off after a while.
In context ↗ - Wim Hof breathing exercises / breathing and meditation · No change
I've done breathing exercises, but they've slipped from my routine as they didn't make much difference
In context ↗ - Clemastine · Helped
I took it and immediately saw an improvement to my energy levels /stamina and for a few days i actually felt normal. Unfortunately the usual symptoms came back/crashed again
In context ↗ - Quercetin · No change
Been on quercetin for ages ... No change unfortunately for me.
In context ↗ - NAC · No change
recently added NAC along with loads of others ... No change unfortunately for me.
In context ↗ - SSRIs (fluoxetine) · Helped
I tried SSRIs and they helped me with my first bout of LC bit not the second!
In context ↗ - Beta blockers (propranolol) · Helped
For my palpitations I use beta blockers. They work brilliantly and I never had any side effects from taking them.
In context ↗ - Acupuncture · Not said
I've tried pretty much everything from hyperbaric oxygen, acupuncture, massage, cold water therapy
In context ↗ - Massage · Not said
acupuncture, massage, cold water therapy, breathing and meditation
In context ↗ - Cold water therapy · Not said
massage, cold water therapy, breathing and meditation
In context ↗ - Low histamine diet · No change
Tried the low histamine diet for about 3 weeks and that did nothing.
In context ↗ - Meat only diet · Not said
low histamine diet, meat only diet and just about every supplement going
In context ↗ - Horse dewormer (ivermectin) · Not said
and even horse dewormer (not even joking)
In context ↗ - Various supplements · No change
Tried various dosages and varieties of supplements but they didn't help.
In context ↗ - Organic cider vinegar · Not said
I've been taking organic cyder vinegar ... to help with my gut, but tbh I'm really not sure what helps.
In context ↗ - Celery juice · Not said
masses of celery juice and Kimchee to help with my gut, but tbh I'm really not sure what helps.
In context ↗ - Novavax vaccine · Worse
the symptoms (leg fatigue) got much worse. Had it exactly 2 months ago so I have given it some time to take effect.
In context ↗ - Ketotifen · No change
I'm also on ketotifen - (sp?) which is an antihistamine. Not sure they've made much difference, as I started them first and noticed no changes
In context ↗ - Low-dose naltrexone (LDN) · Helped
Saw a noticeable bump immediately after taking them and a gradual improvement in fatigue! Brain fog/ palpitations.
In context ↗ - Stronger antihistamines · Worse
I quickly stopped the antihistamine as they wiped me out completely.
In context ↗ - Nicotine patches · Helped a lot
Also used nicotine patches for a few months and in conjunction, they seemed the best things I've tried (also on LDN).
In context ↗ - Eating once a day / intermittent fasting · Helped a lot
I've been doing this now for about 10 weeks now and have seen a huge improvement in my energy levels
In context ↗
Approaches: H1 antihistamines · Diet · Exercise and activity
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 20 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 |
|---|---|---|---|
| 2020 | long COVID beganI had LC for a year after with all the usual symptoms.In context ↗ | Not stated | |
| early 2022 | slowly got better, then back to the gymSlowly got better. In February i started going to the gym again and improved a lot.In context ↗ | Mild | |
| February 2022 | gym 4-5 times a week, fitness back6 months off going to the gym 4-5 times per week. Usually for about an hour and twenty each time and really exerting myself. Felt great (never 100% as before but really really good).In context ↗ | Near normal | Everyday exercise and activity |
| July 2022 | crashed after helping a friend move housethen in July after helping a friend move house where the helpers failed to show, i massively over exerted myself carrying boxes /furniture etc. ... whammo, about a week later I thought I'd caught a bug, but nope LC returned.In context ↗ | Moderate | |
| October 2024 | worse than at any earlier pointthen 2 days later, wham! LC returned with a vengeance. That was over 2 years ago and I'm worse than I ever was.In context ↗ | Moderate | |
| October 2025 | eating once a day, nicotine patches and LDNI'm probably about 60% better - which for me was bloody huge and I'm so happy.In context ↗ | Mild | Low-dose naltrexone |
| April 2026 | LDN benefit fading, considering a higher doseI'm not seeing much benefit anymore so am thinking of trying that.In context ↗ | Mild |
Adverse events
- Meditation, yoga, breathwork“Actually felt worse after the first few days but apparently that's a normal reaction” In context ↗ Made symptoms worse
- COVID vaccination as treatment“the symptoms (leg fatigue) got much worse” In context ↗ Made symptoms worse
- Fluoxetine (Prozac)“Only when I was on SSRI's (fluoxitine specifically). That was half the reason I came off them.” In context ↗ Side effects
- Hyperbaric oxygen (HBOT)“The only negative I found was the earache which can be quite painful until you get used to it.” In context ↗ Side effects
- Clemastine (Tavist), H1 antihistamines (unspecified)“I quickly stopped the antihistamine as they wiped me out completely.” In context ↗ Side effects
- Nicotine patches“I had to come off the patches as they moved from helping massively to making me wired (even on very low doses)” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeart symptoms & palpitationsMuscle weaknessPost-exertional malaiseSleep problemsTinnitus
Their words about their symptoms
- Post-exertional malaise
For me it's the classic CFS/PEM
In context ↗ - Brain fog
dreadful brain fog as well as the other usual symptoms full on
In context ↗ - Gut problems
I get frequent loose stool issues due to LC
In context ↗ - Sleep problems
the classic CFS/PEM, Brain fog, tinnitus, gastric issues, insomnia, palpitations etc.
In context ↗ - Tinnitus
Brain fog, tinnitus, gastric issues, insomnia, palpitations etc.
In context ↗ - Heart symptoms & palpitations
For my palpitations I use beta blockers.
In context ↗ - Muscle weakness
Legs keep giving way when walking even short distances which is scary AF!
In context ↗ - Anxiety & low mood
my anxiety attacks are at a lower level than my other symptoms
In context ↗ - Breathlessness
Not quite as bad as the last time (breathing is now not as bad)
In context ↗
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