ME/CFS
Moderate → somewhat better
Moderate/severe ME/CFS, now somewhat better; credits ginkgo and thiamine
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Dec 2024
In their words
- Condition: ME/CFS
my old cfs self
In context ↗ - At worst: Moderate
I was moderate/severe last year.
In context ↗ - Now: Somewhat better
I was moderate/severe last year. Now working 32 hours a week.
In context ↗
Read from 41 of their posts and comments; links to the 33 this page draws on
Summary
Crest 20872, with ME/CFS, reported daily air hunger, orthostatic intolerance and IBS and rated themselves moderate/severe in 2023. They credited ginkgo biloba, high-dose thiamine, B vitamins, electrolytes and magnesium; antihistamines improved orthostatic intolerance by about 70%. By May 2024 they worked 32 hours a week from home. Running 1 km was followed by a marked worsening a month later. CBT cost about 6K and did nothing.
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What they tried
What they credit
Also tried
NAC· Helpedmagnesium bisglycinate· HelpedCoQ10· HelpedAcetyl L-Carnitine· Helpedlactoferrin· Helpedelectrolytes and ORS· Helpedbaking soda· Helpedoxaloacetate· Helped · wore offPQQ· Helpedantihistamines· Helpedliposomal glutathione· HelpedD-phenylalanine· Helped · wore offL-glutamine· Helpedcurcumin· No changediet change· No changecreatine· No changeCBT· No changemelatonin· No changeaspirin· No changeprobiotics· Worsepush ups· Worsesublingual b12· WorseD-ribose· Worserunning 1km· WorseNMN, NR· Worsevitamin D· Not saidmagnesium malate· Not saidKetotifen· Not said
Their words about each treatment
- curcumin · No change
I’ve taken curcumin for a week now and I don’t feel anything.
In context ↗ - NAC · Helped
Yes it did work a bit. Used it for over a month taking 1500mg at some point.
In context ↗ - diet change · No change
I thought maybe I had to change diet but it didn’t do anything.
In context ↗ - probiotics · Worse
I always get a irritable bowel when taking probiotics, which is ironic actually.
In context ↗ - vitamin D · Not said
I take vitamine D supplement every day (25mcg) after dinner (absorbs with fat).
In context ↗ - magnesium malate · Not said
At this moment: coq10, vit D, magnesium malate and tomorrow Acetyl L-Carnitine will be delivered.
In context ↗ - magnesium bisglycinate · Helped
Magnesium bysglicinate: slightly better sleep quality, waking up more freshly.
In context ↗ - CoQ10 · Helped
I take PQQ with CoQ10 combination and cycle ALCAR. They both help in terms of physical and mental energy.
In context ↗ - Acetyl L-Carnitine · Helped
Yes I like it, gives me a bit more energy and mental clarity.
In context ↗ - vitamin b-complex · Helped
My ‘guilty pleasure’ is vitamine b-complex as I instantly feel some relieve of symptoms.
In context ↗ - ashwagandha · Helped
Ashwagandha: somehow it gives me more energy and boosts up my mood.
In context ↗ - lactoferrin · Helped
Lactoferrin: when I have a cold or infection.
In context ↗ - thiamine (B1) · Helped
thiamine high dose (250mg, every day) ... I think I will dose up the thiamine after a few weeks.
In context ↗ - Omega 3 · Helped
I’ve been taking probiotics, vitamin B-complex (with taurine, 3x a week), thiamine high dose (250mg, every day), vit D, Omega 3 and magnesium this week and I’m feeling pretty energetic so far.
In context ↗ - creatine · No change
Been using creatine for a while but it doesn’t do anything.
In context ↗ - electrolytes and ORS · Helped
Elektrolytes and ORS for orthostatic intolerance.
In context ↗ - push ups · Worse
But in the end it did nothing for CFS. After a while I was getting sick and uncomfortable afterwards so I stopped.
In context ↗ - CBT · No change
I did CBT and it did nothing for my symptoms.
In context ↗ - baking soda · Helped
I’ve mixed some baking soda (just a little bit, like the tip of a spoon) with some ORS and it made my cognitive functions much better.
In context ↗ - sublingual b12 · Worse
I’m only doing sublingual b12 and I feel my symptoms getting a little worse.
In context ↗ - Ginkgo Biloba · Helped a lot
I started yesterday taking a low/normal dose (60mg) and after a few hours my brain fog was almost gone
In context ↗ - vinpocetine · Helped
High dose thiamine (B1) ... Ginkgo biloba ... Vinpocetine
In context ↗ - oxaloacetate · Helped
Oxaloacetate: works really well on providing energy, but it is expensive as hell.
In context ↗ - melatonin · No change
Melatonine doesn’t work for me either.
In context ↗ - D-ribose · Worse
For me it only gave me diarrhea.
In context ↗ - Ketotifen · Not said
I am on Ketotifen and using some other supplements so it was a test if it helps for PEM.
In context ↗ - antihistamines · Helped
I have orthostatic intolerance which the antihistamines improved it for ~70%, as well as calming down my IBS symptoms a bit.
In context ↗ - running 1km · Worse
last month I tried running 1km which went pretty well. ... Now 1 month later my symptoms are getting much worse again.
In context ↗ - liposomal glutathione · Helped
On hard days I take liposomal glutathion with NAC and glycine with some other stuff that helps a bit
In context ↗ - aspirin · No change
Tried it twice but didn’t notice anything.
In context ↗ - D-phenylalanine · Helped
The first time I took it it was great, felt the dopamine boost.
In context ↗ - coffee · Helped
I’ve tried cutting out coffee for a while but felt better with coffee actually.
In context ↗ - L-glutamine · Helped
Honestly L-glutamine helps 100 times better for me than d-ribose
In context ↗ - NMN, NR · Worse
Gave me anxiety and no energy
In context ↗
Approaches: Other drugs and medicines · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2023 | self-rated moderate/severe the year beforeYes I was moderate/severe last year. Now working 32 hours a week.In context ↗ | Moderate | |
| 2024-03-06 | air hunger eased after about a month on NACMy heart came out normal/healthy so I’m going to start taking NAC again. It did help in the end.In context ↗ | Not stated | |
| 2024-04-07 | felt energetic on a supplement stack and walked 30 minutes without PEMYesterday walked around 30 minutes with no dramatic PEM.In context ↗ | Mild | |
| 2024-05-07 | brain fog and cold hands and feet cleared on ginkgo bilobaafter a few hours my brain fog was almost gone and my muscles felt ‘oxygenated’ for the first time everIn context ↗ | Mild | |
| 2024-05-12 | working 32 hours a week from homeNow working 32 hours a week. Simple administrative work from home.In context ↗ | Mild | |
| 2024-11-04 | crashed after running 1 km on a running padNow 1 month later my symptoms are getting much worse again. It’s not worth it in my opinion.In context ↗ | Not stated | |
| 2024-11-11 | antihistamines improved orthostatic intolerance by about 70%Very well so far but could be better. I have orthostatic intolerance which the antihistamines improved it for ~70%In context ↗ | Mild | H1 antihistamines (unspecified) |
Adverse events
- Probiotics and fermented foods“I always get a irritable bowel when taking probiotics, which is ironic actually. Usually it gets worse the moment I have to poo.” In context ↗ Gut side effects
- Baking soda (sodium bicarbonate), Salt, electrolytes and fluids“I did get a little nauseous but it went away after a few minutes.” In context ↗ Side effects
- Everyday exercise and activity“After a while I was getting sick and uncomfortable afterwards so I stopped.” In context ↗ Made symptoms worse
- Vitamin B12“I’m only doing sublingual b12 and I feel my symptoms getting a little worse.” In context ↗ Made symptoms worse
- D-ribose“For me it only gave me diarrhea.” In context ↗ Gut side effects
- NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP)“Gave me anxiety and no energy” In context ↗ Mood or psychiatric effects
- Oxaloacetate“it gives me anxiety and heart palpitations so I had to stop.” In context ↗ Mood or psychiatric effects
- Oxaloacetate“it gives me anxiety and heart palpitations so I had to stop.” In context ↗ Heart rhythm problems
- Oxaloacetate“I feel awful after the smallest dosage of 500mg so it’s not for everybody as well” In context ↗ Made symptoms worse
- Oxaloacetate“Both made me feel terrible, increased my RHR.” In context ↗ Heart rhythm problems
Symptoms mentioned
Brain fogBreathlessnessGut problemsPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
Unfortunately it does nothing for my fatigue and I still experience PEM sometimes.
In context ↗ - Brain fog
after a few hours my brain fog was almost gone
In context ↗ - POTS & dysautonomia
Orthostatic intolerance is by far my worst symptom.
In context ↗ - Gut problems
I always get a irritable bowel when taking probiotics, which is ironic actually.
In context ↗ - Breathlessness
I have air hunger every day and my lungs are perfectly healthy.
In context ↗ - Sleep problems
slightly better sleep quality, waking up more freshly.
In context ↗ - Temperature regulation
No cold hands or feet as well.
In context ↗
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