ME/CFS
Moderate → much betterIll 13 years before improving or writingNeeds ongoing treatment
Moderate ME/CFS for 13 years, now much better on a zero-carb carnivore diet
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 13 years
- Last post
- Feb 2025
In their words
- Condition: ME/CFS
12 years cfs, gave up on recovery 6 years ago.
In context ↗ - At worst: Moderate
Down from moderate to mild.
In context ↗ - Now: Much better
Right now I am back on carnivore, because I realized it's the only way...yes the diet helps, the only thing that does actually
In context ↗
Read from 41 of their posts and comments; links to the 27 this page draws on
Summary
Lake 59066 had ME/CFS for about 13 years, sitting at moderate while pushing through work as a software developer before quitting their job in 2021. A strict zero-carb carnivore diet brought their CFS down to mild, though the low energy baseline and post-exertional malaise remained. A switch to Mediterranean keto in 2023 brought back muscle aches, headache and brain fog, and they returned to carnivore.
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What they tried
What they credit
Also tried
nofap· HelpedNAC and S-Acetyl L-Glutathione· HelpedNAC and S-Acetyl L-Glutathione· Helpedhot then ice cold water on feet· Helpedprobiotics (capsules, dairy and sauerkraut) and apple pectin· HelpedDAO· Helpedthiamine (allithiamine and sulbutiamine)· No changestack of mitochondria supplements· No changecolostrum· No changeNAD+ patches and NAD precursors· No changelithium orotate· No changetryptophan and 5-HTP· No changetryptophan and 5-HTP· No changecreatine· No changehbot· No changeexogenous ketones· No changeOxaloacetate (OAA)· No changepushing myself· Worserapamycin (rapa)· Worsel-theanine· Not said
Their words about each treatment
- pushing myself · Worse
I've been pushing myself for 3 years, also as a software dev. ... 3 years of misery that I deeply regret.
In context ↗ - nofap · Helped
Recently, I've discovered that the nofap benefits are real, having streaks where my physical/mental energy was higher.
In context ↗ - carnivore / zero carb diet · Helped
It took me being at rock bottom, 12 years into cfs, to do this extreme diet. Brought my cfs down to mild.
In context ↗ - thiamine (allithiamine and sulbutiamine) · No change
I'm currently at 400mg thiamine (allithiamine and sulbutiamine), and no relief from fatigue
In context ↗ - NAC and S-Acetyl L-Glutathione · Helped
What I did notice 1 week into NAC (on empty stomach), is that it reduced my anxiety and bad thoughts.
In context ↗ - stack of mitochondria supplements · No change
You could take the whole stack of mitochondria supplements, I have. But the body just doesn't do/know how to anything with them.
In context ↗ - hot then ice cold water on feet · Helped
I ran hot water on my feet for a few mins, and then after ice cold for a few. ... 90% relief, much easier to fall asleep
In context ↗ - LDN · Helped
On LDN though, a bit over one month, instead of abilify. ... Down from moderate to mild.
In context ↗ - colostrum · No change
Tried a quality colostrum, didn't notice anything. Really believed in it.
In context ↗ - probiotics (capsules, dairy and sauerkraut) and apple pectin · Helped
I took probiotics, capsule and probiotic dairy & sourkraut, and apple pectin as fiber. In this transition my gut health felt good
In context ↗ - NAD+ patches and NAD precursors · No change
I've tried NAD patches more than once, and they do nothing but give a rash.
In context ↗ - rapamycin (rapa) · Worse
I tried this for a month after reading the healthrising article. 3mg once a week. Not good results. It's given me a constant lingering fever. Poisoned type of feeling.
In context ↗ - lithium orotate · No change
coincidentally also lithium orotate 5mg nightly. Haven't noticed anything at all.
In context ↗ - tryptophan and 5-HTP · No change
I've experimented multiple times with tryptophan and 5htp. ... They do absolutely nothing.
In context ↗ - creatine · No change
then start supplementing creatine, but it doesn't work
In context ↗ - hbot · No change
I am in my 4th session of hbot (hardshell 1.3 ATA 60-90min). The last session I was in PEM, and it did not help. At all.
In context ↗ - l-theanine · Not said
Same thing happens to me with the supplement l-theanine
In context ↗ - exogenous ketones · No change
ketogenic fats doesn't give me energy past baseline (and I've tried multiple exogenous ketones)
In context ↗ - Oxaloacetate (OAA) · No change
I am getting a painful/sore throat and sinuses. Anyone else? No benefits noticed at all, just this side-effect.
In context ↗ - DAO · Helped
Look into taking DAO with your food, that helps me alot
In context ↗
Approaches: Diet
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 12 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 |
|---|---|---|---|
| onset | CFS began; had already given up on recovery by 201512 years cfs, gave up on recovery 6 years ago.In context ↗ | Not stated | |
| 2021 | rock bottom, pushing through three years of work as a software developerI've been pushing myself for 3 years, also as a software dev.In context ↗ | Moderate | |
| 2022-11-10 | about a month on LDN; down from moderate to mildOn LDN though, a bit over one month, instead of abilify. Down from moderate to mild.In context ↗ | Mild | Low-dose naltrexone |
| 2023-04-17 | 1.5 years of zero-carb carnivore brought CFS down to mild1.5 years zero carb, brought my 13 years of cfs down to mild.In context ↗ | Mild | |
| 2023-10-28 | switched from carnivore to Mediterranean keto; muscle aches, bad sleep, headache and brain fog returnedSymptoms right now compared to carnivore are full body muscle aches, bad sleep with what seems like cortisol or histamine spike issues, headache, brain fog.In context ↗ | Mild | |
| 2024-03-18 | back on strict carnivore; pain, brain fog and vertigo gone, PEM and low energy remainCarnivore resolves so many symptoms that it's worth it. I can have no pain/aches, brain fog, vertigo, ect. ect. But the cfs low energy baseline and PEM is still there.In context ↗ | Mild |
Adverse events
- NAC (N-acetylcysteine)“Bad side effect is that it burns my stomach, and flares up my ulcer.” In context ↗ Gut side effects
- NAC (N-acetylcysteine)“NAC & asprin gives me heartburn” In context ↗ Gut side effects
- Carnivore diet“I found myself starving. No amount of ribeyes, other protein, or fat would fill or satiate me for more than about 2 hours.” In context ↗ Side effects
- Carnivore diet, Keto and low-carb diets“my neuropathy recently got worse. It actually got worse because of diet change, I reintroduced fruits into my elimination diet.” In context ↗ Made symptoms worse
- Rapamycin / sirolimus“3mg once a week. Not good results. It's given me a constant lingering fever. Poisoned type of feeling.” In context ↗ Side effects
- Rapamycin / sirolimus“rapa consistently gave me a low-grade flu-like side effect, so I stopped” In context ↗ Side effects
- NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP)“I've tried NAD patches more than once, and they do nothing but give a rash.” In context ↗ Allergic reaction / anaphylaxis
- Keto and low-carb diets“Symptoms right now compared to carnivore are full body muscle aches, bad sleep with what seems like cortisol or histamine spike issues, headache, brain fog.” In context ↗ Made symptoms worse
- Oxaloacetate“I am getting a painful/sore throat and sinuses. Anyone else? No benefits noticed at all, just this side-effect.” In context ↗ Side effects
- Oxaloacetate“I haven't noticed any positives at 500mg, 1000 or 2000 per day, just an increase in side-effect with dose.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
The PEM is horrible, mostly 2-day recoveries needed.
In context ↗ - Brain fog
I can have no pain/aches, brain fog, vertigo, ect. ect.
In context ↗ - Headaches & migraine
Carnivore is anti inflammatory and cured my decade long headache, muscle aches, and night camps.
In context ↗ - Gut problems
for over a decade I've had digestive/ibs issues
In context ↗ - Sleep problems
if I come out of ketosis, such as adding white rice to diet, sleep is horrible.
In context ↗ - Mast cell (MCAS) & allergies
Through my carnivore journey the issues I've had are satiety, inconsistent stools, and histamine intolerance.
In context ↗ - Neuropathy & tingling
my neuropathy recently got worse
In context ↗ - Anxiety & low mood
it reduced my anxiety and bad thoughts
In context ↗
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