ME/CFS
Severe → somewhat betterIll 15 years before improving or writingNeeds ongoing treatment
Mostly housebound and often bedridden with ME/CFS, now somewhat better after DNRS and diet
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 15 years
- Last post
- Feb 2025
In their words
- Condition: ME/CFS
I’m longterm Post-Lyme (12yrs) & ME/CFS.
In context ↗ - At worst: Severe
I was almost entirely housebound and frequently bedbound when I did the program
In context ↗ - Now: Somewhat better
It improved or eliminated a lot of symptoms for me, especially pain, cognitive, and environmental reactivity symptoms, but unfortunately didn’t dramatically help fatigue or PEM.
In context ↗ - Began after: a bacterial or tick-borne infection
my illness started with a tick bite and Lyme Disease et al
Read from 86 of their posts and comments; links to the 25 this page draws on
Summary
After a tick bite around 2011 they developed Lyme, coinfections and EBV reactivation, then ME/CFS. By 2017 they were mostly housebound and often bedridden; in-person DNRS retraining gave lasting gains in cognition and environmental reactivity, though fatigue and PEM remained. In 2024 a CIRS/Welchol protocol and dietary changes helped further; off-label fatigue medications caused side effects, and they remained disabled.
Ask Miruvor AI
What they tried
What they credit
Also tried
magnesium oxide· HelpedGatorade mixed into water· HelpedModafinil· HelpedAmantadine· Helpedlow-dose naltrexone· Helped · wore offmelatonin (Thorne)· HelpedEnzymedica digestive enzymes (Digest Gold with Probiotics, Lacto)· Helpedvodka· Helped · wore offAdvil· Helpedpacing· Helpedunplugging wifi router at night· Helped15 months of combo antibiotics for Lyme· No changemigraine medications· No changeWellbutrin· WorseSumatriptan· Worseselenium supplement· Much worseLactaid· Not saidthyroid medication· Not saidPrimal Trust· Not said
Their words about each treatment
- DNRS limbic system retraining · Helped
I had good success and it eliminated or improved a ton of symptoms. But only moderate improvement in fatigue.
In context ↗ - Shoemaker protocol with Welchol as a binder · Helped
I’ve made some good progress lately by treating CIRS using the Shoemaker protocol under the guidance of my physician.
In context ↗ - gluten-free, soy-free, dairy-free, egg-free, low-sulfur diet with food trigger avoidance · Helped
My baseline has been declining this year and this is the first thing that has led to improvement since that started.
In context ↗ - magnesium oxide · Helped
I’ve had success substantially limiting the pain by taking magnesium daily
In context ↗ - Gatorade mixed into water · Helped
drinking Gatorade mixed into my water
In context ↗ - 15 months of combo antibiotics for Lyme · No change
I did 15 months of combo antibiotics for Lyme et al and years of all kinds of other treatments
In context ↗ - Modafinil · Helped
the first two did help with energy
In context ↗ - low-dose naltrexone · Helped
I started it a few weeks ago (at .05mg) and had the best sleep of my life since I got sick
In context ↗ - Wellbutrin · Worse
It was recommended to me by my neurologist to treat fatigue. Unfortunately I couldn’t take it due to side effects I’m prone to.
In context ↗ - melatonin (Thorne) · Helped
I just started a new brand of melatonin- Thorne, which is helping. Previous pharmacy brand did nothing for me.
In context ↗ - Enzymedica digestive enzymes (Digest Gold with Probiotics, Lacto) · Helped
I like Digest Gold with Probiotics, and Lacto, which I use if eating dairy.
In context ↗ - Lactaid · Not said
Even better than Lactaid imo
In context ↗ - vodka · Helped
When my brain fog and cognitive issues were bad vodka helped a lot (as in temporarily.)
In context ↗ - Sumatriptan · Worse
I’ve only taken it once but got so many side effects including just being a drugged mess
In context ↗ - migraine medications · No change
Migraine meds weren’t helpful
In context ↗ - Advil · Helped
Advil sometimes decreased intensity slightly.
In context ↗ - selenium supplement · Much worse
I almost died of selenium poisoning thanks to supplements that were prescribed to me.
In context ↗ - thyroid medication · Not said
My thyroid levels have been tracked the 13 years & I’ve been on daily meds.
In context ↗ - pacing · Helped
Resting and pacing is the way to get relief.
In context ↗ - unplugging wifi router at night · Helped
Sleeping near a Wifi router also gives me similar symptoms so I unplug mine at night.
In context ↗ - Primal Trust · Not said
I just signed up myself.
In context ↗
Approaches: Brain retraining · Diet · Mould avoidance
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 6 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 |
|---|---|---|---|
| around 2011 | tick bite; Lyme, coinfections and EBV reactivationMy illness started a year later with a tick bite that gave me Lyme, coinfections, and reactivated EBV.In context ↗ | Not stated | |
| about 2017 | mostly housebound and frequently bedridden; considered physician-assisted suicideI was almost entirely housebound and frequently bedbound when I did the programIn context ↗ | Severe | |
| 2017-2018 | immediate progress at in-person DNRS; returned to dating, volunteering, social events and travelsaw some immediate progress, and life became infinitely better over the next year. I was able to start living life again.In context ↗ | Mild | |
| May 2024 | CIRS Shoemaker protocol with Welchol binder; walking more and less severe PEMI’ve been taking Welchol as a binder for about 7 months. This week I’ve exercised more than the past year combined (just walking 1.5 miles each four daysIn context ↗ | Moderate | Mold avoidance / CIRS protocol |
| later in 2024 | baseline declined through the yearMy baseline has been declining this yearIn context ↗ | Moderate | |
| November 2024 | cleaner diet and enough protein; woke without poisoned or hungover feelingI’m waking up not feeling poisoned/hungover for the first time in over a decadeIn context ↗ | Moderate | |
| February 2025 | still far from cured; signed up for Primal TrustI’m far from cured ... I just signed up myself. | Moderate |
Adverse events
- Sumatriptan (Imitrex)“I’ve only taken it once but got so many side effects including just being a drugged mess lol.” In context ↗ Side effects
- “I think it gave me bloating, didn’t feel like it was helping, and it didn’t feel as gentle as the other ones.” In context ↗ Gut side effects
- Mold avoidance / CIRS protocol“I’m on binders now and flaring (or at least more fatigued than usual) lol so we shall see.” In context ↗ Made symptoms worse
- Modafinil / armodafinil“I had to discontinue all of them due to side effects, but the first two did help with energy ... The side effects were cardiac.” Heart rhythm problems
- Amantadine“I had to discontinue all of them due to side effects, but the first two did help with energy ... The side effects were cardiac.” Heart rhythm problems
- Low-dose naltrexone“I had side effects from it many years ago so discontinued it but later realized it was probably the filler that was the issue” In context ↗ Side effects
- Low-dose naltrexone“I previously had an issue when a pharmacy filled mine with lactose.” In context ↗ Side effects
- Low-dose naltrexone“I’m also having side effects (reflux and more fatigue since it’s having a sedative effect) so still in the adjustment phase of it though they’re improving.” In context ↗ Gut side effects
- Low-dose naltrexone“I’m also having side effects (reflux and more fatigue since it’s having a sedative effect) so still in the adjustment phase of it though they’re improving.” In context ↗ Made symptoms worse
- Magnesium“magnesium glycinate gave me extreme anxiety but I do great on magnesium oxide.” In context ↗ Mood or psychiatric effects
- Selenium“I almost died of selenium poisoning thanks to supplements that were prescribed to me.” In context ↗ Other
- Gluten-free diet“I felt terrible the first month and then had more energy than I’d ever had” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeadaches & migraineNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
My remaining symptoms are fatigue and PEM
In context ↗ - Brain fog
My brain fog and cognitive issues, which were quite bad, were largely resolved by limbic system retraining.
In context ↗ - POTS & dysautonomia
typically too exhausted and lightheaded to even sit up for long
In context ↗ - Sleep problems
spend way too much time sleeping and lying down
In context ↗ - Pain & fibromyalgia
I’ve had success substantially limiting the pain by taking magnesium daily
In context ↗ - Headaches & migraine
I have the daily headache and no medications have helped
In context ↗ - Neuropathy & tingling
I used to get fireworks like sensations in my leg muscles after walking.
In context ↗ - Anxiety & low mood
physician assisted suicide felt like my only option
In context ↗ - Flu-like symptoms
waking up not feeling poisoned/hungover for the first time in over a decade
In context ↗
Ask Miruvor AI
Similar stories
-
Severe long COVID for 9-10 months, now improved with mould protocol and diet
She traced her long Covid to COVID vaccines, dating it to a 2022 Moderna booster and worsening after mould exposure and a 2024 Covid infection; she was severe for about 9-10 months, losing her job and lying on the floor all day. A functional medicine…
-
Bedbound with severe ME/CFS, now much better with pacing and nervous system work
Quail 14526 fell ill with mild ME/CFS in 2016 at 18 after a GI virus and lived a restricted but near-normal life for seven years. Two Moderna shots in 2021 and COVID in 2022 pushed her to severe and bedbound. From 2023, diet changes, supplements, pacing and…
-
Housebound with ME/CFS and nerve pain, now close to normal after mold detox and peptides
Beacon 95212 became ill after COVID vaccination, with POTS, fatigue and later nerve pain; they were housebound while living with mold and had severe nerve pain for about two years. They attribute improvement to detoxing mold, treating Lyme, peptides,…
-
Not enough detail to draw a path
Housebound with ME/CFS after mono, now much better after Lyme and babesia treatment
They were diagnosed with then-CFS after mono in 2003 aged 22, housebound two years, then relapsed in 2012 and were housebound four more years until treatment for Lyme and babesia brought remission. COVID in 2021 and 2024 each triggered long COVID;…