ME/CFS
Severe → somewhat betterIll 3 years before improving or writing
Severe, mostly bedridden ME/CFS after nicotine patches; some improvement with Mestinon
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
Diagnosed ME/CFS (2025, Freiburg).
In context ↗ - At worst: Severe
I am fully bedridden now with symptoms 24/7.
In context ↗ - Now: Somewhat better
My crashes lasted around 10 days but since I started Mestinon they got significantly lighter and shorter (now around 2 days)
In context ↗ - Began after: a bacterial or tick-borne infection
Around a bit more than a year ago I had a tick bite with a rash, which made me feel super sick
Read from 26 of their posts and comments; links to the 16 this page draws on
Summary
After a tick bite and COVID in August 2023 they developed Lyme disease, then ME/CFS, MCAS and POTS, and were mild for about two and a half years. Nicotine patches in August 2025 crashed them into a severe, mostly bedridden state. Mestinon later shortened crashes from ten days to two, but MCAS flares kept them severe, and by September 2026 little had helped.
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What they tried
What they credit
Also tried
cetirizine· Helpedpacing· Helpedheart rate tracking· Helpedmeditation· Helpedlorazepam (Ativan)· Helpedfexofenadine· Helpedprobiotics· No changenystatin· No changeChinese herbs (TCM study)· No changeacupuncture (TCM study)· No changedoxycycline· Worsemirtazapine· WorseLDN· Worseketotifen· Worsequercetin· Worseskullcap· Worsemontelukast· WorsePEA· WorsePQQ (pyrroloquinoline quinone)· Worsenicotine patches· Much worseKreon (pancreatic enzymes)· Not saidPPIs (Prilosec)· Not saiddietary changes· Not saidfamotidine (Pepcid)· Not saidCoQ10· Not saidB-complex· Not saidribose· Not saidmagnesium· Not saidomega-3· Not saiddesloratadine· Not saidivabradine· Not saidMCAS friendly food· Not saidcromolyn· Not saidluteolin· Not said
Their words about each treatment
- doxycycline · Worse
gave me 4 weeks of doxycycline. I reacted SUPER bad to the antibiotics. I almost passed out, had to puke and got flu like symptoms
In context ↗ - Kreon (pancreatic enzymes) · Not said
**Kreon** (still using)
In context ↗ - PPIs (Prilosec) · Not said
I had to take 3 months of PPIS because they thought I am having a gastritis, which in fact I have not.
In context ↗ - probiotics · No change
I even tried several long term probiotics and antibiotics which changed nothing.
In context ↗ - nystatin · No change
I also tried taking nystatin for a while which changed nothing.
In context ↗ - dietary changes · Not said
I have also tried all the big dietary changes. Since this all started I feel like I can't eat gluten, corn, soy and milk products anymore.
In context ↗ - Chinese herbs (TCM study) · No change
they test TCM (accupuncture and chinese herbs) so far I didn't feel any siginficant change
In context ↗ - mirtazapine · Worse
I just reacted very very poorly to low dose mirtazapin and fear it might be the same for these?
In context ↗ - famotidine (Pepcid) · Not said
Also I take 5mg Famotidin in the morning and evening - more would sedate me
In context ↗ - cetirizine · Helped
**Cetirizine** → slight improvement
In context ↗ - CoQ10 · Not said
**Supplements:** CoQ10, B-complex, ribose, magnesium, omega-3
In context ↗ - LDN · Worse
**LDN (0.5 mg and 0.1 mg):** severe stomach cramps and anxiety at both doses.
In context ↗ - nicotine patches · Much worse
Nicotine actually made me crash like nothing else ever did. It made me go from mild to very severe in a week!
In context ↗ - pacing · Helped
no PEM because I kept pacing!
In context ↗ - heart rate tracking · Helped
I managed to not crash for 30 days with tracking my heart rate
In context ↗ - meditation · Helped
Afterwards I directly meditated and regulated which felt good
In context ↗ - Mestinon · Helped
since I started Mestinon they got significantly lighter and shorter (now around 2 days)
In context ↗ - desloratadine · Not said
**Cetirizine & Desloratadine:** less effective than fexofenadine.
In context ↗ - ivabradine · Not said
2x 1,25 mg Ivabradin
In context ↗ - lorazepam (Ativan) · Helped
I feel like ativan always helps a lot but it it's never lasting + it worsens my pots :(
In context ↗ - MCAS friendly food · Not said
I drastically shortened the food I consume, I really started digging into MCAS friendly food, I hope that will help!
In context ↗ - ketotifen · Worse
**Ketotifen (0.1 mg):** absolutely wrecked me. I felt sick and heavily sedated for 3 days.
In context ↗ - quercetin · Worse
**Quercetin:** severe nausea and a lot of pain.
In context ↗ - cromolyn · Not said
Cromolyn: 1600 mg/day (spread throughout the day)
In context ↗ - luteolin · Not said
Luteolin: 50 mg every morning
In context ↗ - skullcap · Worse
**Skullcap:** same reaction as quercetin.
In context ↗ - montelukast · Worse
**Montelukast:** actually helped, but it made me severely depressed, so I had to stop.
In context ↗ - PEA · Worse
**PEA (600 mg):** caused an intense MCAS flare. Maybe I should have started with a much lower dose?
In context ↗ - PQQ (pyrroloquinoline quinone) · Worse
I took it last week monday 20mg and I got super nauseous, crazy vertigo, dizziness, fatigue, pain
In context ↗
Approaches: POTS medication
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 |
|---|---|---|---|
| August 2023 | Lyme disease and COVID, then mild ME/CFS for about 2.5 yearsI was mild most of the time (2.5 years)In context ↗ | Mild | |
| 2025-08-21 | crashed extremely badly after stopping nicotine patchesIn the evening on the second day off I crashed extremely bad. I can't leave bedIn context ↗ | Severe | Nicotine patches |
| 2025-11-25 | fully bedridden, symptoms 24/7 after repeated crashesI am fully bedridden now with symptoms 24/7.In context ↗ | Severe | |
| 2026-06-20 | crashes became lighter and shorter; 200-300 steps and some reading when not crashedsince I started Mestinon they got significantly lighter and shorter (now around 2 days)In context ↗ | Severe | Mestinon / pyridostigmine |
| 2026-07-09 | still severe; MCAS flares to food, heat and windows dominateI feel like, in my case, MCAS is the main thing keeping me stuck in the severe stage.In context ↗ | Severe |
Adverse events
- Doxycycline (Vibramycin)“I reacted SUPER bad to the antibiotics. I almost passed out, had to puke and got flu like symptoms.” In context ↗ Side effects
- Low-dose naltrexone“since I take it I have this Nausea and stomach pain” In context ↗ Gut side effects
- Low-dose naltrexone“the first day I was super nervous and anxious” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“stomach pain & crash” In context ↗ Made symptoms worse
- Nicotine patches“Nicotine actually made me crash like nothing else ever did. It made me go from mild to very severe in a week!” In context ↗ Made symptoms worse
- Famotidine (Pepcid)“triggered severe crash” In context ↗ Made symptoms worse
- Famotidine (Pepcid)“more would sedate me” In context ↗ Side effects
- Mirtazapine (Remeron)“I just reacted very very poorly to low dose mirtazapin” In context ↗ Made symptoms worse
- PQQ (pyrroloquinoline quinone)“I took it last week monday 20mg and I got super nauseous, crazy vertigo, dizziness, fatigue, pain” In context ↗ Made symptoms worse
- Baicalein and quercetin“severe nausea and a lot of pain” In context ↗ Gut side effects
- Skullcap“same reaction as quercetin” In context ↗ Made symptoms worse
- Ketotifen (Zaditen)“I felt sick and heavily sedated for 3 days” In context ↗ Side effects
- Montelukast / Singulair“actually helped, but it made me severely depressed, so I had to stop” In context ↗ Mood or psychiatric effects
- Palmitoylethanolamide (PEA)“caused an intense MCAS flare” In context ↗ Autoimmune or inflammatory flare
- Lorazepam (Ativan)“I get a paradox reaction which i think might be due to my POTS as lorazepam widens blood vessels and lower blood pressure which then makes my heart go fast” In context ↗ Heart rhythm problems
- Lorazepam (Ativan)“it worsens my pots” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Post-exertional malaise
Usually I can tell quite good when PEM hits and I did to much
In context ↗ - Brain fog
felt like dissociating + crazy brain fog
In context ↗ - POTS & dysautonomia
So after Lyme I developed ME/CFS, MCAS and POTS.
In context ↗ - Mast cell (MCAS) & allergies
Eat the wrong food → MCAS flare
In context ↗ - Pain & fibromyalgia
I am trapped in insane anxiety, sadness, pain, fatigue.
In context ↗ - Gut problems
since I take it I have this Nausea and stomach pain
In context ↗ - Temperature regulation
Heat/cold sensitivity
In context ↗ - Flu-like symptoms
Pseudo-fever flares
In context ↗
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