Largely housebound with ME/CFS, somewhat better after antihistamines and low-histamine diet
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 10 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
I now have ME/Long COVID at 25.
In context ↗ - At worst: Severe
I leave the house about once a month, can't get up before 12, have no social life
In context ↗ - Now: Somewhat better
I've seen some improvements treating SIBO, Lyme + other tick born illnesses, MCAS and histamine intolerance
In context ↗ - Began after: COVID
So I was diagnosed with long COVID, then realised that I'd had mild ME symptoms for 2 years prior.
Read from 20 of their posts and comments; links to the 14 this page draws on
Summary
Glacier 49102 was unwell on and off from age 19 and by 25 had ME/long COVID; he became disabled by ME/CFS, POTS and MCAS, largely housebound and unable to work. Antihistamines helped his brain, and a strict low-histamine diet eased his gut symptoms, energy and crashes, with non-gut benefits after about six weeks. Treating POTS and MCAS improved his quality of life, though he stayed largely housebound, and later treatment for SIBO and tick-borne infections brought some improvements while he was finishing treatment for reactivated EBV.
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What they tried
What they credit
Also tried
Their words about each treatment
- Antihistamines · Helped
Antihistamines helped my brain, the diet helped my digestive system.
In context ↗ - low histamine diet · Helped
The low histamine diet has helped my IBS and energy and crashing. But it is a long and slow process, took 6 weeks to start helping my non-GI tract symptoms.
In context ↗ - making your bedroom very cold · Helped
making your bedroom very cold can help. It definitely helps me.
In context ↗ - low dose naltrexone · Helped
Antihistamines, low histamine diet, low dose naltrexone
In context ↗ - low glycemic diet · Helped
It has definitely helped me, but is not a miracle cure in the short term.
In context ↗ - salt in water · Helped
I add salt to the water which seems to help a lot.
In context ↗ - consistent sleep schedule · Helped
I consistently get 9-10 hrs a night which in turn makes me feel less shit.
In context ↗ - breathing retraining exercises · Helped
the breathing retraining exercises did help me
In context ↗ - treating Lyme + other tick born illnesses · Helped
I've seen some improvements treating SIBO, Lyme + other tick born illnesses, MCAS and histamine intolerance
In context ↗ - treatment for reactivated EBV · Not said
I'm coming to the end of treating reactivated EBV.
In context ↗ - pacing · Not said
If you know how to pace adequately then they can't help you anymore.
In context ↗
Approaches: H1 antihistamines · Antibiotics · Diet
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 |
|---|---|---|---|
| age 19 | debilitatingly unwell on and offI've been debilitatingly unwell on and off from the ages of 19-25.In context ↗ | Moderate | |
| age 25 | disabled by ME/CFS, POTS and MCAS; stopped working as a researcherPrior to being disabled by MECFS, POTS, and MCAS, I was a researcher/scientist.In context ↗ | Severe | |
| March 2023 | improved a lot over a few weeks; started socialising a littleI've only done this 3 times in the past 6 months though, although I've improved a lot in the last few weeks so will try a bit more now.In context ↗ | Moderate | Low-histamine diet |
| February 2024 | improved a little with POTS and MCAS, quality of life much betterI can say I've improved a little with POTS and MCAS (M26) and my quality of life is much better, but I'm still largely house bound.In context ↗ | Moderate | |
| September 2026 | small improvements treating SIBO, tick-borne infections, MCAS and reactivated EBVI've seen some improvements treating SIBO, Lyme + other tick born illnesses, MCAS and histamine intoleranceIn context ↗ | Moderate | Lyme / co-infection protocols |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
If I don't follow this diet then I'm basically experiencing permanent PEM
In context ↗ - Brain fog
Antihistamines helped my brain, the diet helped my digestive system.
In context ↗ - POTS & dysautonomia
A private GI doctor figured out I had pots after a fainting episode
In context ↗ - Mast cell (MCAS) & allergies
I can say I've improved a little with POTS and MCAS (M26)
In context ↗ - Sleep problems
I end up sleeping between 2:30 am and 12:30 pm (can't seem to sleep any earlier)
In context ↗ - Headaches & migraine
have a agonising headache 100% of the time
In context ↗ - Gut problems
The low histamine diet has helped my IBS and energy and crashing.
In context ↗ - Pain & fibromyalgia
Antihistamines, low histamine diet, low dose naltrexone
In context ↗
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