ME/CFS
Severe → somewhat betterIll 10 years before improving or writingNeeds ongoing treatment
ME/CFS for ten years, mostly stuck in bed, somewhat better with low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 10 years
- Last post
- Jan 2023
In their words
- Condition: ME/CFS
I have chronic fatigue syndrome and only have enough energy to get out of bed and do stuff for 1.5 hours a day.
In context ↗ - At worst: Severe
Before I started taking my stack, it was only 30 minutes a day.
In context ↗ - Now: Somewhat better
Adding my new stuff I'm probably 4.5/10, with potential to heal to 5/10.
In context ↗
Read from 81 of their posts and comments; links to the 38 this page draws on
- Apr 2022
- Sep 2022
- Feb 2019
- Dec 2018
- Apr 2019
- Mar 2019
- Sep 2021
- Mar 2019
- Jul 2021
- Jun 2020
- Jul 2020
- Oct 2021
- Feb 2022
- Sep 2022
- Apr 2022
- May 2022
- Jun 2022
- Jun 2022
- Sep 2022
- Jul 2022
- Jul 2022
- Sep 2022
- Sep 2022
- Mar 2019
- Jul 2020
- Apr 2022
- Apr 2022
- May 2022
- Jun 2022
- Jul 2022
- Aug 2022
- Sep 2022
- Sep 2022
- Sep 2021
- Jan 2023
- Jul 2022
- Feb 2019
- Apr 2022
Summary
Fox 15537 described ten years of CFS with extreme fatigue, brain fog, poor sleep, slow gut motility and sore legs, mostly stuck in bed with about 30 minutes a day of activity. Low-dose naltrexone, alpha lipoic acid, electrolytes and nattokinase/serrapeptase gradually raised their score to 4.5/10 on their own scale, and alpha lipoic acid let them read for hours at a time. Harm included permanent tinnitus from a PEMF device.
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What they tried
What they credit
Low dose naltrexone· Helped a lot · mainEscitalopram· HelpedWim Hof breathing· HelpedSynthroid· HelpedYoga, physio and relaxation training· HelpedElectrolytes (salt and potassium chloride)· Helped · mainAlpha lipoic acid (Na-R-ALA)· Helped · mainCoQ10· HelpedMethylphenidate sustained release· HelpedCBT for body image· HelpedNattokinase and serrapeptase· HelpedNattokinase and serrapeptase· Helped
Also tried
NSI-189· Helped a lot · wore offCoffee· HelpedEarplugs· HelpedNoopept· HelpedOlanzapine (Zyprexa)· HelpedMultivitamin· HelpedMagnesium· Helped · wore offPacing courses· HelpedD-ribose· HelpedKetogenic diet· HelpedProbiotics (gargled)· HelpedMiraLAX (polyethylene glycol)· HelpedLLLT red light therapy (Maxpro 900)· HelpedAdrenal cortex (Thorne)· HelpedTart cherry, black seed and curcumin· No changeMonolaurin (Lauricidin)· No changeLemon balm· No changeCetirizine· No changeDaily dog walking· WorseICES PEMF system· WorseMegadosed minerals (magnesium, zinc, copper, milk, multivitamins)· WorseMegadosed minerals (magnesium, zinc, copper, milk, multivitamins)· WorseMegadosed minerals (magnesium, zinc, copper, milk, multivitamins)· WorseGinseng· WorseMedicinal mushrooms (reishi, lion's mane)· WorseAlpha GPC and sunflower lecithin· WorseFish oil· WorseBacopa and ashwagandha· WorseBacopa and ashwagandha· WorsePine bark extract· WorseNAC· WorseALCAR· WorseOil of oregano· WorseResveratrol· WorseGarlic· WorseAntibiotics· WorsePsyllium husk· WorseRhodiola· WorseAspirin· WorseSulforaphane and broccoli sprout extract· WorseAbilify (aripiprazole)· Not saidWheat bran· Not said
Their words about each treatment
- Coffee · Helped
I drink a ton of coffee every day, as long as I don't move much or think too hard, it improves my quality of life a bit.
In context ↗ - Earplugs · Helped
My parents make so much noise and earplugs bring it down to a point where I can handle it.
In context ↗ - Daily dog walking · Worse
I forced myself to walk 12 minutes a day for a month and my symptoms got worse permanently
In context ↗ - Escitalopram · Helped
10 mg escitalopram helps improve my mood by making it more stable, and it helps mental clarity a bit.
In context ↗ - Noopept · Helped
Noopept and nsi-189 were the best two drugs that I've found.
In context ↗ - NSI-189 · Helped a lot
Taking 20 mg a day, I was able to get up and do things for 2 hours, when I was only taking this, with what felt like just pure power of will.
In context ↗ - ICES PEMF system · Worse
It only gave me minor benefits, and in the end gave me permenent tinnitus.
In context ↗ - Megadosed minerals (magnesium, zinc, copper, milk, multivitamins) · Worse
I was on the toilet for like an hour.
In context ↗ - Wim Hof breathing · Helped
Wim hof breathing helps my posture, peripheral nervous system, and I feel a tiny bit healthier/less brainfog using it.
In context ↗ - Synthroid · Helped
25 mcg Synthroid thyroid hormone helps a bit with energy and is very safe, even though I not low on thyroid hormone.
In context ↗ - Yoga, physio and relaxation training · Helped
It took years of relaxation training, physio, yoga etc for it to come somewhat close to normal.
In context ↗ - Olanzapine (Zyprexa) · Helped
It seems to help my muscles relax and my brain be less overactive. I sleep 12 hours on it but feel slightly rested
In context ↗ - Ginseng · Worse
these all heavily stimulate the immune system and made me extremely tired and brain-fogged
In context ↗ - Medicinal mushrooms (reishi, lion's mane) · Worse
I can't handle ginseng or any medicinal mushrooms either such as reishi or lion's mane.
In context ↗ - Multivitamin · Helped
When I'm crashing I have a multivitamin (50% daily dose) and 200 mg magnesium.
In context ↗ - Electrolytes (salt and potassium chloride) · Helped
Electrolytes give me more energy, help my constipation, and lower muscle tension.
In context ↗ - Low dose naltrexone · Helped a lot
This is by far the best drug for me, it alone added 1 hour of light activity for me a day.
In context ↗ - Pacing courses · Helped
So far I found the courses to be mildly helpful.
In context ↗ - Alpha lipoic acid (Na-R-ALA) · Helped
Alpha lipoic acid works instantly and gives me clarity and focus while doing low energy things like reading for multiple hours.
In context ↗ - CoQ10 · Helped
I find both ALA and CoQ10 work best out of all the anti oxidants for my brainfog and fatigue
In context ↗ - Methylphenidate sustained release · Helped
20 mg methylphenidate sustained release helps overcome the sickness response which causes inactivity and brainfog.
In context ↗ - CBT for body image · Helped
CBT for body image helps with nervous system sensitization, at least a tiny bit.
In context ↗ - Alpha GPC and sunflower lecithin · Worse
These gave me mania making me have huge bursts of energy and clarity followed by depression and fatigue.
In context ↗ - Tart cherry, black seed and curcumin · No change
Tart cherry, black seed, curcumin: did nothing
In context ↗ - Fish oil · Worse
Fish oil: gave depression and nothing else.
In context ↗ - Bacopa and ashwagandha · Worse
very strong adaptogens but caused fatigue and anhedonia eventually
In context ↗ - Pine bark extract · Worse
At 400 mg it gave me brainfog.
In context ↗ - D-ribose · Helped
D-ribose: gave energy but was subtle, it cost a lot and you have to eat a lot of it so I cut it out of my stack.
In context ↗ - NAC · Worse
Too much antioxidants, I can only take one at a time or I get fatigue and depression. That is pycogenol, nac, alcar, coq10, curcumin, and many others.
In context ↗ - Ketogenic diet · Helped
I did very early on in my disease. I think it helped a bit.
In context ↗ - Abilify (aripiprazole) · Not said
Abilify at high doses (10mg) causes extreme akathisia for me. I now take it at 5 mg and it is tolerable, but not perfect.
In context ↗ - Probiotics (gargled) · Helped
It greatly reduced my need to brush my teeth
In context ↗ - Oil of oregano · Worse
anything that negatively effects my gut microbiome causes my gut to freeze up and I barely defecate
In context ↗ - Garlic · Worse
That means garlic, ginger, ginsing, medicinal mushrooms, all vitamins and minerals, rhodiola and some others.
In context ↗ - Monolaurin (Lauricidin) · No change
I haven’t noticed too much from lauricidin, for the first week I felt herx symptoms so there was some sort of die off, and since then it has been hard to notice anything.
In context ↗ - Antibiotics · Worse
And I’ve tried antibiotics once for two weeks.
In context ↗ - Lemon balm · No change
Lemon balm has weak inhibition of gaba t but I tried it and didn’t get much from it.
In context ↗ - MiraLAX (polyethylene glycol) · Helped
I take miralax(polyethylene glycol) every 2 days to keep me regular.
In context ↗ - Psyllium husk · Worse
I can’t tolerate psyllium husk personally, I think I have a slight allergy, it gave me brainfog and a headache when I took it.
In context ↗ - Wheat bran · Not said
I’m also taking wheat bran.
In context ↗ - Nattokinase and serrapeptase · Helped
But on Natto/serra I didn't feel the need to complain, my body wasn't really sending danger/stress signals.
In context ↗ - LLLT red light therapy (Maxpro 900) · Helped
LLLT does nothing for my energy and brainfog, but it really helps my peripheral nervous system.
In context ↗ - Adrenal cortex (Thorne) · Helped
The adrenal cortex helps a bit with no side effects.
In context ↗ - Rhodiola · Worse
Ginseng, rhodiola, various mushrooms, vitamins and minerals: these all heavily stimulate the immune system and made me extremely tired and brain-fogged.
In context ↗ - Cetirizine · No change
I tried it at 20 mg for 2 days and noticed nothing
In context ↗ - Aspirin · Worse
Aspirin makes my fatigue a bit worse.
In context ↗ - Sulforaphane and broccoli sprout extract · Worse
I found broccoli sprouts boosted my immune system too much and made me tired.
In context ↗
Approaches: CBT & mindset · POTS medication · SSRIs · Anticoagulants · Mind-body practices · Stimulants · Supplements · Thyroid hormones
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 | After |
|---|---|---|---|
| ~2011 | CFS onset, right side tension and food sensitivityat first I was extremely sensitive to different foods and took 2hr to get out of bedIn context ↗ | Severe | |
| 2019-04 | permanent leg soreness after walking 12 minutes a day for a monthI forced myself to walk 12 minutes a day for a month and my symptoms got worse permanentlyIn context ↗ | Severe | |
| before April 2022 | only 30 minutes a day out of bed doing thingsBefore I started taking my stack, it was only 30 minutes a day.In context ↗ | Severe | |
| 2022-04-04 | activity up from 30 minutes to 1.5 hours a day on their stackI have chronic fatigue syndrome and only have enough energy to get out of bed and do stuff for 1.5 hours a day.In context ↗ | Severe | Low-dose naltrexone |
| 2022-09-22 | can sit at a computer for 4 hours at a time with a restYesterday I was able to sit at a computer and read for 4 hours, then go back to bed for 1 hourIn context ↗ | Moderate | Low-dose naltrexone |
| 2023-01-15 | still doing better and no longer desperate to try new therapiesactually doing quite a bit better nowIn context ↗ | Moderate |
Adverse events
- PEMF“It only gave me minor benefits, and in the end gave me permenent tinnitus.” In context ↗ Other
- PEMF“I found that using the PEMF caused me to go into massive mineral deficiency, primarily zinc, magnesium, and potassium.” In context ↗ Refeeding or deficiency problems
- Magnesium, Zinc, Copper“After 12 hours though, I started getting diarhhea.” In context ↗ Gut side effects
- Sulforaphane and broccoli sprout extract“I found broccoli sprouts boosted my immune system too much and made me tired.” In context ↗ Made symptoms worse
- Olanzapine (Zyprexa)“The downside of it is weight gain and brain fog.” In context ↗ Side effects
- Levothyroxine (Synthroid)“take too much and you have insomnia and diarrhea, I got that side effect at 50 mcg” In context ↗ Side effects
- CoQ10 / ubiquinol, Pycnogenol and grape seed extract, NAC (N-acetylcysteine), L-carnitine“Too much antioxidants, I can only take one at a time or I get fatigue and depression.” In context ↗ Made symptoms worse
- Noopept“Some nootropics help like noopept and sunflower lecithin(for choline), but they can also make me a bit manic at times and then depressed at others.” In context ↗ Mood or psychiatric effects
- Ginseng, Bacopa, Ashwagandha, Oregano oil, Garlic and garlic extract, Lemon balm, Rhodiola“Ginseng, rhodiola, various mushrooms, vitamins and minerals: these all heavily stimulate the immune system and made me extremely tired and brain-fogged.” In context ↗ Made symptoms worse
- “I still have slight nerve pain and tingling from it” In context ↗ Nerve pain
- “But it eventually started giving noticeable mania and nerve tingling.” In context ↗ Mood or psychiatric effects
- “These gave me mania making me have huge bursts of energy and clarity followed by depression and fatigue.” In context ↗ Mood or psychiatric effects
- Bacopa, Ashwagandha“very strong adaptogens but caused fatigue and anhedonia eventually.” In context ↗ Mood or psychiatric effects
- Omega-3 and fish oil“Fish oil: gave depression and nothing else.” In context ↗ Mood or psychiatric effects
- Pycnogenol and grape seed extract“At 400 mg it gave me brainfog.” In context ↗ Made symptoms worse
- Alpha-lipoic acid (ALA, R-ALA)“I got insomnia at first and took it in the morning for 6 months until I got used to it.” In context ↗ Insomnia from treatment
- Alpha-lipoic acid (ALA, R-ALA)“Taking it too often seems to cause depression for me” In context ↗ Mood or psychiatric effects
- Low-dose Abilify / aripiprazole“Abilify at high doses (10mg) causes extreme akathisia for me.” In context ↗ Side effects
- Methylphenidate (Ritalin, Concerta)“Just I tend to feel worse in the afternoons when it wears off.” In context ↗ Side effects
- CoQ10 / ubiquinol“Taking it every day makes me feel worse.” In context ↗ Made symptoms worse
- Antibiotics (unspecified)“anything that negatively effects my gut microbiome causes my gut to freeze up and I barely defecate” In context ↗ Gut side effects
- Monolaurin (Lauricidin)“I did get detox symptoms for a few days but it also made me more constipated” In context ↗ Gut side effects
- Low-dose naltrexone“I had to reduce my Ldn from 4.5 mg to 2mg, it was giving me depression, malaise, and nausea” In context ↗ Side effects
- Psyllium husk (Metamucil)“it gave me brainfog and a headache when I took it” In context ↗ Side effects
- Alpha-lipoic acid (ALA, R-ALA)“The 125mg dose works a bit better but has a slight mania side effect for me.” In context ↗ Mood or psychiatric effects
- Monolaurin (Lauricidin)“Symptoms were increased pain, brainfog, slight headache, slight malaise.” In context ↗ Herx / die-off reaction
- Red and near-infrared light therapy“If I did more I would feel shitty the whole day.” In context ↗ Made symptoms worse
- Magnesium“If I take any of those I usually get symptoms of potassium deficiency such as fatigue, constipation and ADHD symptoms.” In context ↗ Refeeding or deficiency problems
- Aspirin“Aspirin makes my fatigue a bit worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogFlu-like symptomsGut problemsLight & noise sensitivityNeuropathy & tinglingPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitus
Their words about their symptoms
- Post-exertional malaise
I forced myself to walk 12 minutes a day for a month and my symptoms got worse permanently
In context ↗ - Brain fog
Alpha lipoic acid really helps my brainfog
In context ↗ - Sleep problems
Symptoms of this disease are brainfog, extreme fatigue, malaise, poor sleep
In context ↗ - Pain & fibromyalgia
now my legs hurt a medium amount in the evenings, persisting 8 months so far
In context ↗ - Gut problems
My gut motility is incredibly slow
In context ↗ - Neuropathy & tingling
I also have tingling in my arms and legs
In context ↗ - Light & noise sensitivity
Rather than fatigue, I mostly get hours that feel like pure suffering, complete sensory overload
In context ↗ - Flu-like symptoms
I get tired, and I get a sore throat
In context ↗ - Tinnitus
in the end gave me permenent tinnitus
In context ↗
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