ME/CFS
Severe → somewhat betterIll 7 years before improving or writingNeeds ongoing treatment
House- and bedbound with ME/CFS, now somewhat better with nicotine patches and LDN
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 7 years
- Last post
- Oct 2025
In their words
- Condition: ME/CFS
I've had MECFS for 7+ years, post tick-bite.
In context ↗ - At worst: Severe
I have been house/bedbound for nearly 7 years. I work remotely and sit up for 1h a day, 5 days a fortnight - which is my absolute max.
In context ↗ - Now: Somewhat better
I've walked more today around the house than in 7 years
In context ↗ - Began after: a bacterial or tick-borne infection
I've had MECFS for 7+ years, post tick-bite.
In context ↗
Read from 31 of their posts and comments; links to the 22 this page draws on
Summary
Island 38307 has had ME/CFS for over seven years after a tick bite, and has been house- and bedbound, using a wheelchair at home and sitting up about an hour a day, five days a fortnight. Nicotine patches were credited with gains; during a patch round they walked 150 m without PEM and had more activity around the house. LDN and ATP360 were also credited with gains, and a gluten-free, low-sugar diet helped. A family visit left them feeling terrible, and running out of ATP360 made cognition and energy plummet.
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What they tried
What they credit
Also tried
gluten-free diet· Helped a lotMetoprolol· Helpedthc:cbd 1:1· Helpedcranial osteopathy· HelpedGlycine· HelpedL-theanine· Helped5HTP· HelpedMelatonin· HelpedD-ribose· HelpedChamomile, Lemon Balm, Passionflower, Valerian· HelpedChamomile, Lemon Balm, Passionflower, Valerian· HelpedChamomile, Lemon Balm, Passionflower, Valerian· HelpedChamomile, Lemon Balm, Passionflower, Valerian· Helpedbreathwork· Helpedbenzodiazepines· HelpedGarmin smartwatch and Visible app· HelpedMestinon· No changeBuhner herbs· Worsecistus tea· Worsedoxycycline· Worseenzymes· Worseketo· Worsemeditation· Worseskipping lunch and cutting carbs· WorseIntermittent fasting· Worsepacing· Not saidHouttuynia (Myc-P)· Not said
Their words about each treatment
- Buhner herbs · Worse
I did an array of Buhner herbs + cistus tea + doxycycline + enzymes - I herxed like hell back then
In context ↗ - cistus tea · Worse
now I can drink cistus no probs, and I don't seem to be herxing
In context ↗ - keto · Worse
I tried keto my first year, but I had such bad liver pains on it, that it wasn't sustainable.
In context ↗ - Researched Nutritionals ATP360 · Helped a lot
Researched Nutritionals ATP360 - I've been on it for about 5 years. Recently ran out and boy did I feel like shite, till it came back in again.
In context ↗ - LDN · Helped a lot
That and LDN. Game changers.
In context ↗ - pacing · Not said
I didn't start learning to pace properly until a few years ago.
In context ↗ - gluten-free diet · Helped a lot
Since cutting out gluten, I have much less weird body sensations, heavy legs etc. ... In my view, it has made a huge difference.
In context ↗ - Metoprolol · Helped
I absolutely love it - totally helps get my sympathetic nervous system under control.
In context ↗ - Mestinon · No change
and Mestinon - so far zero except sleepless nights
In context ↗ - nicotine patches · Helped a lot
Nicotine patches have become a life saver - I can spend more time upright, clearer head.
In context ↗ - thc:cbd 1:1 · Helped
I vape and use a thc:cbd 1:1 cap that my local hemp embassy produces. Sleeeeeeeep
In context ↗ - cranial osteopathy · Helped
I get cranial osteopathy - it is REALLY gentle and perfect for MECFS.
In context ↗ - Magnesium glycinate and threonate · Helped
Magnesium glycinate and threonate - 600mg a day or my muscles cramp and ache - help sleep too.
In context ↗ - B1 TTFD · Helped
B1 TTFD - less lactic acid.
In context ↗ - B6, B12 and folate · Helped
B6, B12 and folate (all active forms) for less neuro symptoms.
In context ↗ - Butyrate · Helped
Butyrate for my guts.
In context ↗ - Glycine · Helped
using Mg glycinate, Glycine, L-theanine, 5HTP,
In context ↗ - L-theanine · Helped
And theanine is an extra bit of magic.
In context ↗ - 5HTP · Helped
My sleep has improved significantly - using Mg glycinate, Glycine, L-theanine, 5HTP,
In context ↗ - Melatonin · Helped
And of course, Melatonin - but for some reason, it only works a few times a week - if I take it every day, I end up wired.
In context ↗ - D-ribose · Helped
I also found that when I cut out my morning D-ribose I didn't sleep as well.
In context ↗ - Chamomile, Lemon Balm, Passionflower, Valerian · Helped
Chamomile, Lemon Balm, Passionflower makes a great tea & Valerian if you just need to be knocked out
In context ↗ - breathwork · Helped
I've found focussing on breathwork alone way more helpful - 4-7-8 is good
In context ↗ - meditation · Worse
Meditating can be really stressful sometimes when we're trying too hard.
In context ↗ - benzodiazepines · Helped
Benzos are great but very addictive - I only use when anxiety creeps in.
In context ↗ - Garmin smartwatch and Visible app · Helped
I second the Garmin smartwatch w/ body battery, great for seeing if in actually resting, or stressing out.
In context ↗ - Houttuynia (Myc-P) · Not said
a kinesiologist (clutching at straws here) prescribed Houttuynia and I found it in Myc-P (herbal) for possible Lyme/Bartonella
In context ↗ - skipping lunch and cutting carbs · Worse
I recently started avoiding lunch ... My partner noticed a decline and has begged me to eat a hard-boiled egg if nothing else!
In context ↗
Approaches: Supplements
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 7 years 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 |
|---|---|---|---|
| ~2017 | ME/CFS onset after tick biteI've had MECFS for 7+ years, post tick-bite.In context ↗ | Not stated | |
| 2024-2025 | house/bedbound, wheelchair at home, sit up about 1 hour a dayI have been house/bedbound for nearly 7 years. I work remotely and sit up for 1h a day, 5 days a fortnight - which is my absolute max.In context ↗ | Severe | |
| 2025-04-05 | walked 150 m and down four flights of stairs without PEM; more walking around houseI recently had to walk 150m ... I didn't get PEM from this walk.In context ↗ | Severe | Nicotine patches |
| 2025-04-09 | family visit from overseas; feeling terribletho feeling pretty terrible today - big week last week with fam visiting from o'seas.In context ↗ | Severe | |
| 2025-05-25 | 10% function gain credited to LDN, ATP360 and nicotine patchesLDN, ATP360 (Researched Nutritionals) and Nicotine Patches.In context ↗ | Severe | Low-dose naltrexone |
| 2025-05-26 | ran out of ATP360; cognition and energy plummetedWell I recently ran out, and boy.... cognition, energy plummetedIn context ↗ | Severe |
Adverse events
- Metoprolol (Lopressor, Toprol)“Downside is it flares up MCAS - can't sleep, itch, nasal congestion blah blah damn.” In context ↗ Side effects
- Metoprolol (Lopressor, Toprol)“Beta-blockers were fantastic except for the hives - had to stop them.” In context ↗ Allergic reaction / anaphylaxis
- Nicotine patches“Any more than 3.5mg and my heart goes insane.” In context ↗ Heart rhythm problems
- Nicotine patches“But another side effect is it triggers my MCAS - and I get terrible urticaria” In context ↗ Autoimmune or inflammatory flare
- Nicotine patches“I use the patch from 8.30-5pm - otherwise I haven't been able to sleep (thank you melatonin!)” In context ↗ Insomnia from treatment
- Nicotine patches“my tinnitus ramps up at the beginning of the round, but by week 4 it's all chilling down again.” In context ↗ Made symptoms worse
- Mestinon / pyridostigmine“and Mestinon - so far zero except sleepless nights.” In context ↗ Insomnia from treatment
- Keto and low-carb diets“I tried keto my first year, but I had such bad liver pains on it, that it wasn't sustainable.” In context ↗ Liver or kidney problems
- Keto and low-carb diets, Gluten-free diet“Well severe gb/liver pain, and severe constipation. Enough to put me off!” In context ↗ Gut side effects
- Lyme / co-infection protocols, Cistus incanus, Doxycycline (Vibramycin), Digestive enzymes“When I first got sick I did an array of Buhner herbs + cistus tea + doxycycline + enzymes - I herxed like hell back then” In context ↗ Herx / die-off reaction
- Melatonin“Melatonin - but for some reason, it only works a few times a week - if I take it every day, I end up wired.” In context ↗ Side effects
- Intermittent fasting“I recently started avoiding lunch ... My partner noticed a decline and has begged me to eat a hard-boiled egg if nothing else!” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitus
Their words about their symptoms
- Post-exertional malaise
I expected PEM yday, maybe today
In context ↗ - Brain fog
I still can't walk, have long conversations, or read or write without brain pressure.
In context ↗ - POTS & dysautonomia
totally helps get my sympathetic nervous system under control
In context ↗ - Mast cell (MCAS) & allergies
it flares up MCAS - can't sleep, itch, nasal congestion
In context ↗ - Sleep problems
Melatonin - but for some reason, it only works a few times a week
In context ↗ - Pain & fibromyalgia
my muscles cramp and ache
In context ↗ - Headaches & migraine
read or write without brain pressure
In context ↗ - Gut problems
severe constipation
In context ↗ - Heart symptoms & palpitations
Any more than 3.5mg and my heart goes insane.
In context ↗ - Neuropathy & tingling
for less neuro symptoms
In context ↗ - Anxiety & low mood
I only use when anxiety creeps in.
In context ↗ - Tinnitus
my tinnitus ramps up at the beginning of the round
In context ↗
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