ME/CFS
Moderate → much betterIll 3 years before improving or writing
Mostly housebound with ME/CFS, now about 50% after LDN and rest
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I have ME, Lyme & LC & I’ve yet to find anything that helps my fatigue.
In context ↗ - At worst: Moderate
I’m basically home bound & it’s a miserable life.
In context ↗ - Now: Much better
I’m recovering & getting back out there & now I’m feeling like I’m socially behind.
In context ↗ - Began after: a vaccination
until I got the Covid vaxs & then it all went to sh!t again
Read from 131 of their posts and comments; links to the 55 this page draws on
- Feb 2024
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Summary
A former nurse with ME/CFS and long COVID after vaccination and a hernia repair, following a 2018 bout after hepatitis A and mono. They were mostly housebound and unable to work, with daily crashes, brain fog and pain. LDN, magnesium, Celebrex and a vibration plate helped; acceptance, rest and nervous-system work brought them to about 50%, and at three years they said time had healed them most. They had a seizure during benzo withdrawal.
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What they tried
What they credit
naltrexone (LDN)· Helped a lotbrain retraining· Helped a lot · mainacceptance· Helped a lottime· Helped a lot · mainKlonopin· Helpedpacing· Helpedmagnesium glycinate complex & neuromag· Helpedadderall 10mg IR· Helped · wore offvagal nerve toning / Nikki frequency bracelet· HelpedLyme disease protocol· Helpedmonthly detox IV drips· Helpedvibration plate· Helpedinfrared sauna· Helpedbreath work for vagus toning· Helpedsomatics· Helpedsleep hygiene· Helpedpure REST· Helped · main
Also tried
Restoril (temazepam)· Helped · wore offAmbien· Helped · wore offZyrtec 10 mg· HelpedH2s· Helpedmineral with turmeric, boswelia, black walnut· Helpedmineral with turmeric, boswelia, black walnut· Helpeddiclofenac· HelpedCelebrex· Helpeddrops by Blink· HelpedNAC + glutathione· HelpedNAC + glutathione· Helped1 glass of wine· HelpedMotrin ibuprofen· Helpedgabapentin· Helpedrobaxin· Helpedred light therapy· HelpedMediterranean diet· Helpedchlorella· HelpedValium· Helpedcold plunge· Helpedfluids, water with a pinch of salt· HelpedValcyclovir· No changeexercise (walks, rebounding)· WorseWellbutrin· Worsemassage gun· Worsezofran· Not saidprobiotics· Not saiddetox supplements· Not saidguanfacine· Not saidwearable device· Not saidexposure therapy· Not saidfluvoxemine· Not saidvit d· Not said
Their words about each treatment
- exercise (walks, rebounding) · Worse
I still try so hard to get in exercise once in a while- walks, rebounding, & it doesn’t help one bit.. In all honesty I feel 10x more depleted afterwards.
In context ↗ - Klonopin · Helped
Yep, I take Klonopin! It helps me at 12pm everyday.
In context ↗ - Restoril (temazepam) · Helped
I take Restoril for a few mos than build a tolerance & take Ambien for a few mos, & back & forth. It’s the only way I can get sufficient sleep.
In context ↗ - Ambien · Helped
take Ambien for a few mos
In context ↗ - pacing · Helped
Now that I know to pace/preserve energy & just say no to things that require putting forth energy I can at least get thru the day.
In context ↗ - zofran · Not said
I have zofran for the real bad times.
In context ↗ - Valcyclovir · No change
Valcyclovir isn’t seeming to do anything for me past or present
In context ↗ - magnesium glycinate complex & neuromag · Helped
I’m taking magnesium glycinate complex & neuromag now for it & it actually has helped.
In context ↗ - probiotics · Not said
Also probiotics bc she says it’s living in our guts.
In context ↗ - naltrexone (LDN) · Helped a lot
Yes it helps!!!.. tremendously… but I just wonder if anyone else is in my shoes & what you think about this.
In context ↗ - Wellbutrin · Worse
I tried Wellbutrin but I didn’t sleep for 2 wks straight so I stopped it.
In context ↗ - adderall 10mg IR · Helped
but now, I take a teeny dose every morning & it helps bring me back to myself for a few hrs.
In context ↗ - Zyrtec 10 mg · Helped
Some days I actually feel a lot better energy-wise, other days I fall asleep on the couch @ 3pm.
In context ↗ - H2s · Helped
I do notice that H1 H2s are very helpful!
In context ↗ - mineral with turmeric, boswelia, black walnut · Helped
I started taking a mineral with turmeric, boswelia, black walnut, all of these anti inflammatory properties & it got a lot better.
In context ↗ - diclofenac · Helped
Yes. It helped. I take diclofenac once a day at bedtime & it’s very helpful.
In context ↗ - Celebrex · Helped
Increased energy after starting Celebrex & using vibration plate this week.
In context ↗ - drops by Blink · Helped
I use drops by Blink, they’re great.
In context ↗ - NAC + glutathione · Helped
NAC + Glutathione? That’s helped my brain fog.
In context ↗ - detox supplements · Not said
I believe due to taking detox supplements
In context ↗ - guanfacine · Not said
I have guanfacine, might as well try it! ... I’ll start guanfacine tomorrow & report back if it’s helpful.
In context ↗ - 1 glass of wine · Helped
My 1 glass of wine that makes me feel somewhat normal.
In context ↗ - vagal nerve toning / Nikki frequency bracelet · Helped
I started doing vagal nerve toning & that helped a lot.
In context ↗ - Lyme disease protocol · Helped
it was hell on earth until I started seeing the right people- LLMD’s & functional med.
In context ↗ - Motrin ibuprofen · Helped
Motrin ibuprofen has that effect for me.
In context ↗ - monthly detox IV drips · Helped
IV drips for fibromyalgia-like symptoms
In context ↗ - gabapentin · Helped
Things I’ve found helpful for this: magnesium PO & topically, IV drips for fibromyalgia-like symptoms, diclofenac PO & topically, gabapentin, robaxin, red light therapy, Mediterranean diet, anti inflammatory herbs, chlorella
In context ↗ - robaxin · Helped
diclofenac PO & topically, gabapentin, robaxin, red light therapy
In context ↗ - red light therapy · Helped
gabapentin, robaxin, red light therapy, Mediterranean diet
In context ↗ - Mediterranean diet · Helped
red light therapy, Mediterranean diet, anti inflammatory herbs, chlorella
In context ↗ - chlorella · Helped
Mediterranean diet, anti inflammatory herbs, chlorella
In context ↗ - Valium · Helped
the Valium works fine
In context ↗ - vibration plate · Helped
I do 10 mins every other day to keep things moving & I’m starting to notice energy level increases.
In context ↗ - infrared sauna · Helped
I did an infrared sauna & cold plunge session.
In context ↗ - cold plunge · Helped
I actually felt kind of normal for a moment. But, it all came rushing back pretty quickly.
In context ↗ - massage gun · Worse
I can’t find a good medium with the massage gun as it always ends with me having heart palpitations
In context ↗ - fluids, water with a pinch of salt · Helped
If it’s really severe then fluids for sure, water with a pinch of salt.
In context ↗ - wearable device · Not said
my wearable device has caught 12+ hours of sleep
In context ↗ - brain retraining · Helped a lot
Acceptance, brain retraining, nervous system & polyvagal toning has helped me tremendously, it got me to 50%!!
In context ↗ - breath work for vagus toning · Helped
nervous system healing is a must, breath work for vagus toning
In context ↗ - somatics · Helped
I love somatics too, they help me fall asleep every night.
In context ↗ - sleep hygiene · Helped
I had to completely change my sleeping routine and sleep hygiene.
In context ↗ - acceptance · Helped a lot
Acceptance actually did a great deal of healing for me.
In context ↗ - pure REST · Helped
Just pure REST, for one entire year.
In context ↗ - time · Helped a lot
Seems time has healed me more than anything else.
In context ↗ - exposure therapy · Not said
Yes, exposure therapy was what it was that we were doing.
In context ↗ - fluvoxemine · Not said
I saw a psychiatrist for a long time & took fluvoxemine & everything
In context ↗ - vit d · Not said
I stopped taking my vit d, only take the mag & my level is perfect
In context ↗
Approaches: CBT & mindset · Alternative therapies · Antibiotics · Benzodiazepines · Brain retraining · Mind-body practices · Pacing · Radical rest · Stimulants · Supplements · Trauma & somatic work · Vagus nerve stimulation
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 3 months after onset: the story doesn’t say how ill they were before that. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| June 2023 | hernia repair surgery brought the illness backThen I had a hernia repair surgery in June & it resurfacedIn context ↗ | Mild |
| March 2024 | basically homebound, no longer working as a nurseI’m basically home bound & it’s a miserable life.In context ↗ | Moderate |
| September 2025 | started a vibration plate and Celebrex, noticed more energyIncreased energy after starting Celebrex & using vibration plate this week.In context ↗ | Moderate |
| October 2025 | acceptance, brain retraining and nervous-system work brought them to about 50%Acceptance, brain retraining, nervous system & polyvagal toning has helped me tremendously, it got me to 50%!!In context ↗ | Moderate |
| March 2026 | still recovering gradually; getting back out socially but not back to workI’m recovering & getting back out thereIn context ↗ | Moderate |
Adverse events
- Everyday exercise and activity“I still try so hard to get in exercise once in a while- walks, rebounding, & it doesn’t help one bit.. In all honesty I feel 10x more depleted afterwards.” In context ↗ Made symptoms worse
- Clonazepam (Klonopin)“I am now at the point where I cannot not take it or withdrawal would occur. It absolutely sucks.” In context ↗ Withdrawal problems
- Bupropion (Wellbutrin)“I tried Wellbutrin but I didn’t sleep for 2 wks straight so I stopped it.” In context ↗ Insomnia from treatment
- Amphetamine salts (Adderall)“I take adderall but the crash kills me. ... For a while I couldn’t tolerate stimulants.” Made symptoms worse
- Clonazepam (Klonopin), Temazepam (Restoril), Diazepam (Valium)“I’ve gone through benzo withdrawal several times during LC ... I had a freaking seizure this last time.” In context ↗ Withdrawal problems
- Celecoxib (Celebrex)“I the celebrex & hated the s/e’s too.” In context ↗ Side effects
- Massage guns and handheld massagers (Theragun)“I can’t find a good medium with the massage gun as it always ends with me having heart palpitations” In context ↗ Heart rhythm problems
- Celecoxib (Celebrex)“my arthritic pain is increased oddly enough. Like, my ankles up to hips are now in pain whenever I move.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
My PEM is improving, but other things aren’t.
In context ↗ - Brain fog
Horrible brain fog that’s gone on for YEARS
In context ↗ - POTS & dysautonomia
I think my POTS got a lot better when I started repairing my nervous system.
In context ↗ - Mast cell (MCAS) & allergies
I will have the high histamine feeling at the beginning of the glass of wine
In context ↗ - Sleep problems
I’m on sleep aides & they don’t improve the deep sleep.
In context ↗ - Pain & fibromyalgia
I’ve recently had a flare up where I have had horrible body aches for over a week now.
In context ↗ - Headaches & migraine
I take it daily for headaches mixed with caffeine
In context ↗ - Gut problems
It is for many, one being me! GI issues.
In context ↗ - Heart symptoms & palpitations
it always ends with me having heart palpitations
In context ↗ - Neuropathy & tingling
I have definitely noticed less neuropathy & better circulation since using!
In context ↗ - Anxiety & low mood
extreme anxiety, depression, & I had a period where I would rage out of nowhere
In context ↗ - Flu-like symptoms
First symptoms every time were fatigue, lymph node pain, feeling like/thinking I had the flu, body aches, & fever.
In context ↗ - Temperature regulation
Absolutely had the cold chills/hot flashes, night sweats, waking up in a pool several times a night.
In context ↗
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