ME/CFS
Severe → somewhat betterIll 12 years before improving or writing
Bedridden and severe with ME/CFS, now somewhat better after low-dose naltrexone and deep rest
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 12 years
- Last post
- Jul 2025
In their words
- Condition: ME/CFS
began to shift me out of a severeeeeee ME crash
In context ↗ - At worst: Severe
still bedridden 23 hours a day past year and a half
In context ↗ - Now: Somewhat better
I’m still at the severest edge of moderate ... I’m slowly improving, centimeter by centimeter
Read from 22 of their posts and comments; links to the 16 this page draws on
Summary
Kestrel 62662 was ill with ME/CFS for about twelve years, becoming 95% bedridden and severe for the last year and a half, then slowly improving. They credited low-dose naltrexone, low-dose nicotine patches, tributyrin and gut work, deep rest and bioresonance treatment. By July 2025 they were still at the severest edge of moderate and improving, after spending tens of thousands of dollars on things that did not help.
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What they tried
What they credit
candida/gut dysbiosis work· Helped a lot · wore offnicotine patches· Helped a lot · main · wore offtributyrin· Helped a lot · mainlow dose naltrexone· Helpeddeep rest for a year, no work· Helpedpacing· Helpedlow histamine probiotics including S. Boulardi, L-Reuteri· Helpedicing brain stem/back of neck· Helpedibuprofen· Helpedluteolin· Helpedquercetin· Helpedresveratrol, pterostilbene· Helpedgrape seed extract· Helpedcranberry· Helpedelderberry· Helpedpro resolving mediators· Helpedberberine· Helpedfish oil· Helpedthiamine· Helpedmethylated B12 and folinic acid· Helpedmethylated B12 and folinic acid· HelpedNMN· Helpedlow dose methylene blue· Helpedmulti mineral formula (trace minerals from seeking health)· Helpedginger powder· Helped
Also tried
TRE (trauma/tension releasing exercises)· HelpedHBOT· Helped · wore offBioresonance treatment (Biocom machine & system)· Helpedcomplete sensory deprivation· Helpedblueberry capsules· Helpedartichoke extract· Helpedcoherence breathing, Buteyko breathing, hand on heart and belly· Helpedear massages, vagus nerve work· Helpedjin shin jyustu· Helpedhydroxyzine· Helpedlithium orotate· HelpedTUDCA· Helped
Their words about each treatment
- low dose naltrexone · Helped
low dose naltrexone was super helpful to me! not a cure, but in 3 weeks, took about 30% of that sickly, malaisey, fluey feeling
In context ↗ - TRE (trauma/tension releasing exercises) · Helped
I used to find them incredibly helpful and calming when I was milder and could do them.
In context ↗ - HBOT · Helped
I had done 40 HBOT & they were very temporarily helpful
In context ↗ - candida/gut dysbiosis work · Helped a lot
I once had a short lived one month remission, though a total one, from candida/gut dysbiosis work with a functional medicine Dr.
In context ↗ - deep rest for a year, no work · Helped
along with deep deep deep rest for a year, no work
In context ↗ - pacing · Helped
it's on the of the most helpful things I've done (along rest & pacing)
In context ↗ - Bioresonance treatment (Biocom machine & system) · Helped
I'm three months into Bioresonance treatment (using the Biocom machine & system) and it's been one of the most helpful things for me
In context ↗ - nicotine patches · Helped a lot
Nicotine patches have been as close to (realistic) magic as it can get.
In context ↗ - tributyrin · Helped a lot
It was one of the first things that (alongside another dozen) began to shift me out of a severeeeeee ME crash.
In context ↗ - low histamine probiotics including S. Boulardi, L-Reuteri · Helped
Gut work has been very helpful for me, especially a supplement called tributyrin, and some specific (low histamine) probiotics including S. Boulardi.
In context ↗ - icing brain stem/back of neck · Helped
Icing brain stem/back of neck
In context ↗ - complete sensory deprivation · Helped
Complete sensory deprivation for a few hours a day (dark room, eye mask, no screen, no music, headphones)
In context ↗ - ibuprofen · Helped
On really bad days ibuprofen
In context ↗ - luteolin · Helped
luteolin, resveratrol, quercetin, pterostilbene, grape seed exactract
In context ↗ - quercetin · Helped
quercetin, pterostilbene, grape seed exactract
In context ↗ - resveratrol, pterostilbene · Helped
resveratrol, quercetin, pterostilbene
In context ↗ - grape seed extract · Helped
grape seed exactract, cranberry, elderberry
In context ↗ - cranberry · Helped
cranberry, elderberry, blueberry capsules
In context ↗ - elderberry · Helped
elderberry, blueberry capsules, pro resolving mediators
In context ↗ - blueberry capsules · Helped
blueberry capsules, pro resolving mediators, berberine
In context ↗ - pro resolving mediators · Helped
pro resolving mediators, berberine, fish oil
In context ↗ - berberine · Helped
berberine, fish oil, 50 mg thiamine
In context ↗ - fish oil · Helped
fish oil, 50 mg thiamine, methylated B12
In context ↗ - thiamine · Helped
50 mg thiamine, methylated B12, folinic acid
In context ↗ - methylated B12 and folinic acid · Helped
methylated B12, folinic acid, NMN
In context ↗ - NMN · Helped
NMN, low dose methylene blue
In context ↗ - low dose methylene blue · Helped
low dose methylene blue, tributyrin for gut health
In context ↗ - multi mineral formula (trace minerals from seeking health) · Helped
a multi mineral formula (I like trace minerals from seeking health)
In context ↗ - ginger powder · Helped
Half a teaspoon of ginger powder mixed with a warm morning drink.
In context ↗ - artichoke extract · Helped
I add one teaspoon of ginger powder to a warm morning beverage + artichoke extract (i can only tolerate 50 mg)
In context ↗ - coherence breathing, Buteyko breathing, hand on heart and belly · Helped
rhythmic slow breathing also helps, I personally like coherence breathing
In context ↗ - ear massages, vagus nerve work · Helped
Ear massages are extremely powerful for me.
In context ↗ - jin shin jyustu · Helped
An East Asian energetic/meditative practice jin shin jyustu
In context ↗ - hydroxyzine · Helped
I personally like hydroxyzine
In context ↗ - lithium orotate · Helped
I personally like lithium orotate as one of many many other things
In context ↗ - TUDCA · Helped
I found TUDCA really helpful
In context ↗
Approaches: Alternative therapies · Antifungals · Other drugs and medicines · Pacing · Radical rest · 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. 2 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | ME/CFS onset, ill about twelve yearsFrom my 12 year experience of thisIn context ↗ | Moderate | |
| — | progressed from mild-moderate to 95% bedriddenI only progressed to severe rapidly from more mild-moderate at 38 ... bedridden 23 hours a day past year and a halfIn context ↗ | Severe | |
| — | one-month total remission from candida/gut workI once had a short lived one month remission, though a total one, from candida/gut dysbiosis work with a functional medicine Dr.In context ↗ | Near normal | Antifungals (unspecified) |
| 2024-09-26 | bioresonance plus a year of deep rest off workit’s been one of the most helpful things for me (along with deep deep deep rest for a year, no work)In context ↗ | Severe | |
| 2025-01-07 | nicotine patch rounds, cognitive and sensory gainsNicotine patches have been as close to (realistic) magic as it can get. Still severe, but massive improvements in cognitive and sensory capacityIn context ↗ | Severe | Nicotine patches |
| 2025-07-01 | slowly improving, at the severest edge of moderateI’m still at the severest edge of moderateIn context ↗ | Moderate |
Adverse events
- Nicotine patches“If I've been no the patch a few weeks, the first 1-3 days after discontinuing, I might get some insomnia, so just something to keep in mind.” In context ↗ Insomnia from treatment
Symptoms mentioned
Brain fogFlu-like symptomsGut problemsLight & noise sensitivityPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
I get this symptom when I'm in PEM or rolling PEM but not otherwise
In context ↗ - Brain fog
not a single moment of brain fog or deralization
In context ↗ - Flu-like symptoms
took about 30% of that sickly, malaisey, fluey feeling
In context ↗ - Pain & fibromyalgia
immense benefit in pain reduction
In context ↗ - Light & noise sensitivity
massive improvements in cognitive and sensory capacity & threshold before crashing
In context ↗ - Gut problems
I've been more regular
In context ↗
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