ME/CFS
Very severe → near normalIll 10 years before improving or writingNeeds ongoing treatment
Bedbound with ME/CFS, now nearly back to normal
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 10 years
- Last post
- May 2026
In their words
- Condition: ME/CFS
I have had cfs since 2014
In context ↗ - At worst: Very severe
I was very severe( dark room fully Bedbound- wheelchair to move 3m to bathroom couldn’t be around people)
In context ↗ - Now: Near normal
now I’m back to 10000+ steps a day, working full time and no energy issues
In context ↗ - Began after: glandular fever or EBV
my first time was after Epstein Barr at 24
In context ↗
Read from 189 of their posts and comments; links to the 48 this page draws on
- Oct 2023
- May 2026
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Summary
Hill 57467 fell ill after Epstein Barr at 24, became bedbound, had a six-year remission, then relapsed in 2022 after a cold; she later also reported a mould exposure and positive mould toxicity. Crashes caused light and sound sensitivity, paralysis and inability to eat. She tried functional medicine and many other treatments, said she did not know what helped most, and spent tens of thousands on care; by September 2024 she reported being about 95% recovered, with lingering symptoms she linked more to Ehlers-Danlos than ME.
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What they tried
What they credit
CBD oil with THC· Helped a lotcarnivore / anti-inflammatory diet· Helped a lotcarnivore / anti-inflammatory diet· Helped a lotsafe movement / gentle movement· Helped a lotShoemaker protocol / mold detox· Helped a lotKetotifen· Helped a lot · mainPerrin technique / lymphatic drainage· Helped a lot · mainlow oxalate low histamine high protein high fibre diet· Helpedpacing / 80-20 rule· Helpedradical rest / PEM avoidance· Helpedtrauma therapy· HelpedLDN· Helpedqigong· HelpedEMDR· Helpedosteopathy· Helpedmeditation· Helped
Also tried
Restavit· HelpedTENS machine· HelpedPrimal Trust / brain retraining program· HelpedCurable app· Helpedinfrared sauna· Helpedstrength and vestibular exercises· Helpedfixing posture / moving my body every day· Helpedpeptides· No changeHBOT· No changeIV antibiotics· No changeantivirals· No changeplasma treatments· No changerampycin· No changeAtivan· No changePilates· WorseLexapro· Much worsepushing through· Much worseDoxycycline· Much worsecold and flu tablets· Much worseintermittent fasting· Not saidMethane blue· Not saidGlucathione IV· Not saidHypothermia treatment· Not said
Their words about each treatment
- Lexapro · Much worse
once I started on lexapro I went from super mild to absolutely severe within the month
In context ↗ - Restavit · Helped
take a restavit to knock me out for a few days so I can recover
In context ↗ - CBD oil with THC · Helped a lot
The one thing that’s helped me tremendously is taking cbd with thc.
In context ↗ - peptides · No change
I tried it prior to my last remission with no success
In context ↗ - TENS machine · Helped
I use one for Vagus stimulation and i use it on my calves when I get that weird lactic acid build up feeling.
In context ↗ - intermittent fasting · Not said
I only eat between 11am and 6pm.
In context ↗ - carnivore / anti-inflammatory diet · Helped a lot
Carnivore, ketotifen and the Perrin put mine into remission.
In context ↗ - low oxalate low histamine high protein high fibre diet · Helped
i went low oxalate low histamine high protein high fibre and treating my CCI and eagles syndrome with osteopathy.
In context ↗ - pushing through · Much worse
I kept willing myself to just push through and that backfired completely.
In context ↗ - safe movement / gentle movement · Helped a lot
I attribute my recovery more to functional medicine, radical rest and safe movement.
In context ↗ - pacing / 80-20 rule · Helped
what’s kept me in remission is the 80 20 rule. 80% active 20% resting
In context ↗ - Doxycycline · Much worse
Doxycycline took me from moderate to severe
In context ↗ - Shoemaker protocol / mold detox · Helped a lot
Treatment for Cirs and mold toxicity was a part of my puzzle and helped put my severe cfs into remission.
In context ↗ - Primal Trust / brain retraining program · Helped
I am also attributing some of my progress to brain retraining
In context ↗ - Curable app · Helped
after I did the primal trust program and curable app my PEM and fatigue went away
In context ↗ - trauma therapy · Helped
For me the biggest things to shift the needle, the Perrin technique, ketotifen and trauma therapy.
In context ↗ - Ketotifen · Helped a lot
Ketotofin was a game changer for me!!! I only take 1mg and have done for two years I attributed it to my recovery.
In context ↗ - LDN · Helped
For me ketotifen, LDN, Perrin technique, and a detox protocol
In context ↗ - HBOT · No change
expensive oxygen treatments, plasma treatments, Iv antibiotics, anti vitals, off label pharmaceuticals, rampycin, nothing has helped me get myself back.
In context ↗ - IV antibiotics · No change
Iv antibiotics, anti vitals, off label pharmaceuticals, rampycin, nothing has helped me get myself back.
In context ↗ - antivirals · No change
anti vitals, off label pharmaceuticals, rampycin, nothing has helped me get myself back.
In context ↗ - plasma treatments · No change
plasma treatments ... nothing has helped me get myself back
In context ↗ - rampycin · No change
off label pharmaceuticals, rampycin, nothing has helped me get myself back
In context ↗ - Methane blue · Not said
I tried Methane blue
In context ↗ - Glucathione IV · Not said
I tried Methane blue ... Glucathione IV
In context ↗ - Hypothermia treatment · Not said
Hypothermia treatment
In context ↗ - Ativan · No change
My Pem is mostly spinal pain and pressure in my head and burning skin but Ativan does not help at all.
In context ↗ - cold and flu tablets · Much worse
she had me also on cold and flu tablets to treat the cold I couldn’t shake.
In context ↗ - Perrin technique / lymphatic drainage · Helped a lot
what helped me the most was the Perrin
In context ↗ - infrared sauna · Helped
I have lymphatic drainage done every fortnight followed by infared sauna and dry brushing. It helps so much.
In context ↗ - qigong · Helped
what helped me was a combination of things, a mold detox, qigong, lymphatic stuff
In context ↗ - EMDR · Helped
I found a lot of healing with emdr as I developed severe anxiety while my body proceeded everything
In context ↗ - osteopathy · Helped
treating my CCI and eagles syndrome with osteopathy.
In context ↗ - strength and vestibular exercises · Helped
I have been working on strength and vestibular exercises for my dysautonomia
In context ↗ - fixing posture / moving my body every day · Helped
only thing that’s improved my CCI is fixing my posture/moving my body every day.
In context ↗ - Pilates · Worse
I love Pilates but unfortunately cannot do it anymore or it triggers pem for me!
In context ↗ - meditation · Helped
Resting for me is slow walks and meditation
In context ↗
Approaches: Alternative therapies · Antihistamines & MCAS · Diet · Exercise and activity · Mind-body practices · Mould avoidance · Other drugs and medicines · Pacing · Radical rest · Trauma & somatic work
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 |
|---|---|---|
| age 24 | illness began after Epstein Barrmy first time was after Epstein Barr at 24In context ↗ | Severe |
| 6 months into bed bound | worst of first illness; pushing through backfiredThe worst I was about 6 months into bed boundIn context ↗ | Very severe |
| before pregnancy | slow improvement to 80% recoveredI was already 80% recovered when I fell pregnantIn context ↗ | Mild |
| 2018 | first pregnancy brought full remissionduring my pregnancy my cfs went into a full remissionIn context ↗ | Recovered |
| 2022 | relapse after a cold while living in mould2022 I got a cold and was living in mold and went severe after pushing and crashingIn context ↗ | Severe |
| October 2023 | worst crash after months of radical rest/PEM avoidanceI could not physically move ... couldn’t tolerate light or sound or eat for two weeksIn context ↗ | Very severe |
| January 2024 | considerable decline from radical rest and PEM avoidanceI haven’t posted since I had a considerable decline from trying radical rest and PEM avoidanceIn context ↗ | Severe |
| March 2024 | shifted and stopped having fatigue or PEMsuddenly in March this year something shifted and I haven't had fatigue or PEM sinceIn context ↗ | Near normal |
| December 2024 | CFS removed from diagnosis list; able to leave house and exerciseOfficially had cfs removed from my diagnosis list.In context ↗ | Near normal |
| May 2026 | PEM-free over two years, working and walking 10,000 steps, with residual vertigo, migraine and anxietynow I haven’t have PEM in over two years!In context ↗ | Near normal |
Adverse events
- Escitalopram (Lexapro)“Lexapro made my cfs 1000x worse” In context ↗ Made symptoms worse
- “I saw a decline with anti depressants and then again after a CT scan with contrast” In context ↗ Made symptoms worse
- “I had anaesthetic for a colonoscopy and endoscopy and i crashed significantly afterwards permanently lowering my baseline.” In context ↗ Made symptoms worse
- Escitalopram (Lexapro)“I became suicidal, I was diagnosed with serotonin syndrome” In context ↗ Suicidal thoughts or attempt
- Radical rest“My symptoms have only gotten significantly worse since ceasing all activity and being in rest 100% of the time though.” In context ↗ Made symptoms worse
- “Sleeping aids only made the rem sleep worse for me” In context ↗ Made symptoms worse
- Doxylamine (Unisom)“antihistamines give me cns tremors” In context ↗ Side effects
- Doxycycline (Vibramycin)“Doxycycline took me from moderate to severe” In context ↗ Made symptoms worse
- Ketotifen (Zaditen)“It gave me insane insomnia for the first month but the benefits skyrocketed after that” In context ↗ Insomnia from treatment
Symptoms mentioned
Anxiety & low moodGut problemsHeadaches & migraineLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
my only symptom this time is PEM
In context ↗ - POTS & dysautonomia
I have these symptoms with dysautonomia
In context ↗ - Mast cell (MCAS) & allergies
I also had pots and MCAS.
In context ↗ - Sleep problems
As my cfs got worse my insomnia got worse.
In context ↗ - Pain & fibromyalgia
my Pem is mostly spinal pain and pressure in my head and burning skin
In context ↗ - Headaches & migraine
I still get migraines in the heat
In context ↗ - Gut problems
keeps any gut issues away
In context ↗ - Light & noise sensitivity
couldn’t tolerate light or sound or eat for two weeks
In context ↗ - Muscle weakness
I could not physically move, not in a too tired way but literally couldn’t move
In context ↗ - Neuropathy & tingling
I only have one lingering symptom which is mind tingling in my hands and feet
In context ↗ - Anxiety & low mood
my migraines, vertigo and anxiety is still pretty rampant
In context ↗ - Temperature regulation
I have that but don’t get PEM anymore I think it’s from dysautonomia
In context ↗
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