ME/CFS
Mild → somewhat betterIll 4 years before improving or writingNeeds ongoing treatment
Mild ME/CFS with PEM and brain fog, somewhat better with antihistamines and LDN
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 4 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I have ME/CFS from long covid, and EDS/hypermobility (pre-existing, but worsened by LC).
In context ↗ - At worst: Mild
I have always only had mild ME
In context ↗ - Now: Somewhat better
I get immense relief from my cognitive symptoms – about a 70% reduction in anxiety, depression, and brain fog. ... I don’t have less fatigue, but it’s a bit harder to trigger PEM now
In context ↗ - Began after: COVID
it turned out that covid gave me ME/CFS
In context ↗
Read from 64 of their posts and comments; links to the 37 this page draws on
Summary
Beacon 47762 has had mild ME/CFS since a COVID infection around 2022, with PEM, joint pain, brain fog, migraines and POTS. Guanfacine eased constant fight-or-flight, low-dose naltrexone cut joint pain by about 80%, and twice-daily H1 plus H2 antihistamines lifted roughly 70% of brain fog, depression and anxiety. Mestinon and a beta-blocker withdrawal caused crashes and ketotifen did nothing; they remained mildly ill with PEM.
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What they tried
What they credit
Also tried
CBD vape (no THC)· Helpedcreatine with electrolytes· Helpedtirzepatide· Helpedintermittent fasting· Helpedzinc shampoo and MCT oil for seborrhoeic dermatitis· HelpedLDN· Helpedclonidine· HelpedValium· Helpedibuprofen· Helpedactive rest· Helpedpsilocybin mushrooms· HelpedCOVID vaccination (mRNA)· No changenicotine patches· No changeH1 antihistamines (cetirizine, loratadine, fexofenadine)· No changeH1 antihistamines (cetirizine, loratadine, fexofenadine)· No changeH1 antihistamines (cetirizine, loratadine, fexofenadine)· No changeketotifen· No changesteroid and antihistamine nasal sprays· No changedoxycycline· WorseMestinon· Worseivabradine· WorseVyvanse / ADHD meds· Not saiddextromethorphan· Not saidtriptans· Not saidpacing· Not saidPropranolol (Inderal)· Not said
Their words about each treatment
- COVID vaccination (mRNA) · No change
The vaccine usually makes me feel pretty rough for a day or two, but has no impact on my long covid/CFS
In context ↗ - metoprolol (beta blocker) · Helped
Metoprolol also helps, and my CBD vape
In context ↗ - guanfacine · Helped a lot
Guanfacine changed my life!
In context ↗ - CBD vape (no THC) · Helped
My CBD vape (no THC) really helps.
In context ↗ - nicotine patches · No change
I’ve just started using nicotine patches and haven’t noticed a difference yet.
In context ↗ - creatine with electrolytes · Helped
I’ve been taking 5mg in the morning with electrolytes, which helps by reducing my POTS symptoms.
In context ↗ - doxycycline · Worse
doxycycline cleared up an infection *and* made me seriously consider driving into a tree
In context ↗ - tirzepatide · Helped
I’m on tirzepitide and losing weight without exercise. It’s been fantastic.
In context ↗ - intermittent fasting · Helped
I also had a good experience with intermittent fasting, but that was before I was sick.
In context ↗ - zinc shampoo and MCT oil for seborrhoeic dermatitis · Helped
washing with shampoo that contains zinc (I use Selsun Blue) and letting it sit on my skin for several minutes
In context ↗ - H1 antihistamines (cetirizine, loratadine, fexofenadine) · No change
H1 antihistamines by themselves do sweet fuck all for me
In context ↗ - famotidine (Pepcid) · Helped a lot
Famotidine was a miracle for my brain fog (and depression and anxiety).
In context ↗ - ketotifen · No change
I’ve been on ketotifen for a month and it has made zero difference to anything.
In context ↗ - Mestinon · Worse
Mestinon made me feel great, but made me crash even though I was pacing.
In context ↗ - ivabradine · Worse
Ivabridine kept my heart rate in check really well
In context ↗ - LDN · Helped
I started on 0.5mg of LDN and titrated up to 6mg.
In context ↗ - clonidine · Helped
I have found clonidine helpful as well – it reduces the amount of adrenaline your body produces
In context ↗ - Vyvanse / ADHD meds · Not said
makes my vyvanse work better
In context ↗ - Valium · Helped
I take valium, and I don’t mean sedating as in putting me all the way to sleep
In context ↗ - dextromethorphan · Not said
I took Valium and dextromethorphan on shot day and the following day
In context ↗ - ibuprofen · Helped
I haven’t found anything that helps yet except for ibuprofen, which calms the pain for awhile.
In context ↗ - triptans · Not said
I take triptans now and am waiting to see a neurologist
In context ↗ - steroid and antihistamine nasal sprays · No change
I’ve tried all kinds of antihistamines and steroid nasal sprays and none of them help.
In context ↗ - careful weightlifting (modified StrongLifts 5x5) · Helped
I gained muscle with *very* careful weightlifting.
In context ↗ - active rest · Helped
Any activity that is engaging but isn’t physically or cognitively demanding can be restful.
In context ↗ - psilocybin mushrooms · Helped
I find mushrooms extremely helpful for mental health.
In context ↗ - Propranolol (Inderal) · Not said
when I tried switching to propranolol it sent me into a terrifying depression spiral within two days
In context ↗
Approaches: H2 blockers · Beta-blockers · Exercise and activity · 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. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2022 | COVID infection led to ME/CFSit turned out that covid gave me ME/CFSIn context ↗ | Mild | |
| 2025-08-26 | crashed after taking four year old to a play centreI was only bed bound for a few days, but three weeks later I’m still paying for itIn context ↗ | Moderate | |
| 2026-03-12 | guanfacine eased constant fight-or-flightI was permanently in fight or flight before I started taking itIn context ↗ | Mild | Guanfacine |
| 2026-08-09 | LDN cut night-time joint pain about 80%From my very first dose I noticed a reduction in joint pain – especially at night.In context ↗ | Mild | Low-dose naltrexone |
| 2026-08-30 | H1 plus H2 antihistamines lifted brain fog and depressionit’s done *wonders* for my brain fog and MIRACLES for my depressionIn context ↗ | Mild | Famotidine (Pepcid) |
| 2026-09-02 | crashed on low-dose Mestinon despite pacingMestinon made me feel great, but made me crash even though I was pacing.In context ↗ | Not stated | |
| 2026-09-07 | crashed from adrenaline rebound after stopping beta blockers to switch to ivabradineI stopped beta blockers last week because I was trying to switch to ivabridine. I’m still recovering even though I was fine beforehand and went back on them after two days.In context ↗ | Not stated | |
| 2026-10-26 | still mildly ill with PEM, but depression, anxiety and brain fog much reducedThey haven’t directly helped my fatigue/PEM, but they’ve turned my depression, anxiety, and brain fog *way* down.In context ↗ | Mild | Famotidine (Pepcid) |
Adverse events
- Doxycycline (Vibramycin)“doxycycline cleared up an infection *and* made me seriously consider driving into a tree” In context ↗ Suicidal thoughts or attempt
- Creatine“I took 10g one day by accident and it caused osmotic diarrhoea that lasted for weeks” In context ↗ Gut side effects
- Mestinon / pyridostigmine“Mestinon made me feel great, but made me crash even though I was pacing.” In context ↗ Made symptoms worse
- Metoprolol (Lopressor, Toprol)“I tried to switch from beta blockers to ivabridine without tapering and I was in adrenaline hell by day three.” In context ↗ Withdrawal problems
- Propranolol (Inderal)“when I tried switching to propranolol it sent me into a terrifying depression spiral within two days” In context ↗ Mood or psychiatric effects
- Ketotifen (Zaditen)“The ketotifen is was incredibly sedating for the first two nights” In context ↗ Side effects
- “Weed also stops my nightmares, but if I smoke before I go to sleep I wake up groggy.” In context ↗ Side effects
- COVID vaccination as treatment“I always get a sore arm for a few days, I’m *exhausted for* a day or two after the vaccine” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
it’s a bit harder to trigger PEM now, and PEM doesn’t last as long when it does happen
In context ↗ - Brain fog
this combo cleared up 70% of my brain fog, depression, and anxiety within literally an hour of my first dose
In context ↗ - Anxiety & low mood
I get immense relief from my cognitive symptoms – about a 70% reduction in anxiety, depression, and brain fog
In context ↗ - POTS & dysautonomia
I also have POTS, and I would like to try fludrocortisone or midodrine
In context ↗ - Pain & fibromyalgia
From my very first dose I noticed a reduction in joint pain – especially at night.
In context ↗ - Headaches & migraine
I get migraines that feel like hay fever at first
In context ↗ - Light & noise sensitivity
I have to lay in a dark, quiet room because light and sound hurt, and will cause a splitting headache.
In context ↗ - Sleep problems
it stops my mind racing and gives me nice dreams, which makes falling asleep much easier
In context ↗ - Mast cell (MCAS) & allergies
I had skin prick allergy testing which basically confirmed that I have hayfever but didn’t show anything else
In context ↗ - Flu-like symptoms
every night it feels swollen sore, my lymph nodes in my neck feel tender, and it hurts to swallow
In context ↗ - Heart symptoms & palpitations
I only have tachycardia
In context ↗ - Vision problems
I get a headache and eventually I have trouble focusing my eyes.
In context ↗ - Gut problems
I had no digestive issues except for very occasional reflux while lying down.
In context ↗
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