ME/CFS
Severe → no benefitIll for 6 years
Bedbound or housebound with ME/CFS, tried many treatments without improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 6 years
- Last post
- Dec 2025
In their words
- Condition: ME/CFS
Iv had pots and me/cfs post a concussion 5 years ago.
In context ↗ - At worst: Severe
I am mostly bed bound, sometimes housebound.
In context ↗ - Now: No benefit
It’s actually gotten worse over time. I’m about 6 years in and my depression is probably the worst it’s ever been.
In context ↗ - Began after: injury or surgery
Iv had pots and me/cfs post a concussion 5 years ago.
In context ↗
Read from 73 of their posts and comments; links to the 34 this page draws on
Summary
A woman in Australia developed POTS and ME/CFS after a concussion around 2019, aged about 21, and declined over six years to being bedbound or housebound. She tried LDN, rapamycin, metformin, POTS drugs, ketamine, infrared light, keto and many supplements; infrared light, keto, d-ribose and ketamine gave some relief, but ketamine was stopped after she developed epilepsy. Her pain, neuropathy and depression worsened.
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What they tried
Also tried
ketamine· Helped a lotLDN· Helped · wore offfull body infra red· Helpedpterostilbene· Helped · wore offthc· Helpedketo· Helpedd ribose· Helpedantihistamines· Helpedvit c· Helpedneck manipulation· No changepots meds· No changeMestinon· No changeRapamycin· No changeantidepressants· No changeclonidine· No changemelatonin· No changemagnesium· No changeBCAA· No changeTUDCA· No changeoxaloacetate· Worsegraded exercise· Worsecurcumin (tumeric)· Worsequercetin· Worsemetformin· Worselyrica· Worsevagus nerve stimulation· Not saidsupplements· Not saidginger· Not saidglutathione· Not saidalgae oil· Not saidcbd· Not saidnad· Not saidsodium bicarb enteric pills· Not saidmeditation· Not saidcompression boots· Not saidpain meds· Not saidlow histamine diet· Not saidFlu vaccine· Not saidNortriptyline (Pamelor)· Not said
Their words about each treatment
- LDN · Helped
It worked when I started taking it over a year ago. ... But now I just can’t even tell the difference on or off it.
In context ↗ - oxaloacetate · Worse
Yes I felt wired and manic. I have stopped it.
In context ↗ - neck manipulation · No change
She made me do some neck manipulation for cci just incase and it did nothing so I disregarded it
In context ↗ - graded exercise · Worse
I exercised w a pots phsyio (graded exercise) for 4 years. ... It made my me/cfs worse.
In context ↗ - pots meds · No change
Iv gotten pots treatment but it’s legit done shit all for my me/cfs
In context ↗ - full body infra red · Helped
I do full body infra red. It’s been the one thing to help my neuropathy causing pots and me
In context ↗ - vagus nerve stimulation · Not said
Iv tried all pots meds, LDN red light therapy, vagus nerve stimulation, supplements etc
In context ↗ - supplements · Not said
I’m literally on every single supplement you take AND MORE.
In context ↗ - curcumin (tumeric) · Worse
Tried curcumin (tumeric), quercetin - both remove iron, got v anaemic.
In context ↗ - pterostilbene · Helped
Tried pterostilbene (felt phenomenal for 2 days than stopped sleeping)
In context ↗ - ginger · Not said
I’m also on ginger, glutathione and algae oil. Cbd too
In context ↗ - thc · Helped
Try thc for sleep only thing to kick it for me
In context ↗ - Mestinon · No change
It didn’t help my me/cfs it’s a post drug
In context ↗ - Rapamycin · No change
Iv been on it for 4 months - still titrating up to 3.5mg no benefits seen.
In context ↗ - antidepressants · No change
I’m on antidepressants, they havnt helped.
In context ↗ - ketamine · Helped a lot
When I was allowed to have ketamine I was doing a lot better?
In context ↗ - keto · Helped
Cut out carbs (keto) and it completely disappeared. Breath test confirmed it.
In context ↗ - nad · Not said
I’m on nad and tried neck manipulations by osteo/physio :(
In context ↗ - sodium bicarb enteric pills · Not said
I purchased sodium bicarb enteric pills online!
In context ↗ - d ribose · Helped
d ribose is the only thing to give me energy and improvements. ... it’s caused aweful tummy symptoms, terrible pain and bloating.
In context ↗ - meditation · Not said
exercise, meditation, red light therapy, vagus nerve stimulation, compression boots
In context ↗ - clonidine · No change
Iv tried clonidine, ssri, melatonin, magnesium, every supplement, every sleep med
In context ↗ - pain meds · Not said
many pills (pots meds, LDN, ketamine, pain meds)
In context ↗ - low histamine diet · Not said
I tend to eat low histamine and took some antihistamines for a while but benefited more from vit c actually.
In context ↗ - metformin · Worse
I took 1/2 a dose yesterday and Iv had severe burning in legs. ... But it’s been so much worse.
In context ↗ - lyrica · Worse
last time I was in it I wanted to eat my hand I was so hungry
In context ↗ - vit c · Helped
Vitamin c got rid of my constant runny nose! It defs helps
In context ↗ - BCAA · No change
Took both after reading research, it’s a no.
In context ↗ - Flu vaccine · Not said
Iv gotten side effects and problems from flu vaxs ... after the flu shot reworked my chron pain to a more severe level
- Nortriptyline (Pamelor) · Not said
Mine got worse due to my ssri nortiptyline, common side effect is dry mouth
In context ↗
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 5.3 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 |
|---|---|---|---|
| 5 years before Sept 2024 | Concussion, then POTS and ME/CFSIv had pots and me/cfs post a concussion 5 years ago.In context ↗ | Not stated | |
| 2025-01-09 | d-ribose gave energy but flared SIBOIv tried so many supplements and d ribose is the only thing to give me energy and improvements.In context ↗ | Severe | |
| 2025-05-17 | full-body infrared helped neuropathy, POTS and MEI do full body infra red. It’s been the one thing to help my neuropathy causing pots and meIn context ↗ | Severe | Red light, PEMF or microcurrent (unspecified) |
| 2025-06-22 | ketogenic diet cleared bloating and eased painCut out carbs (keto) and it completely disappeared. Breath test confirmed it.In context ↗ | Severe | Keto and low-carb diets |
| 2025-12-14 | ketamine stopped after epilepsy diagnosis; catastrophic stateMy dr cut me off due to developing epilepsy (get like 2 seizures a year), so I’m now in a catastrophic state.In context ↗ | Severe | |
| 2025-12-29 | mental breakdown, stuck in bed, cannot work or studyCurrently having a mental breakdown. Have lost all my friendships, can’t work/ study. Stuck in bed, nothing to do.In context ↗ | Severe |
Adverse events
- “I had the same effect as above jittery horrible fake energy.” In context ↗ Side effects
- Oxaloacetate“Yes I felt wired and manic. I have stopped it.” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“Not only did it not help but I got worse.” In context ↗ Made symptoms worse
- Graded exercise therapy (GET)“I exercised w a pots phsyio (graded exercise) for 4 years. It made my me/cfs worse.” In context ↗ Made symptoms worse
- Baicalein and quercetin“Tried curcumin (tumeric), quercetin - both remove iron, got v anaemic.” In context ↗ Refeeding or deficiency problems
- Baicalein and quercetin“Tried curcumin (tumeric), quercetin - both remove iron, got v anaemic.” In context ↗ Refeeding or deficiency problems
- “Tried pterostilbene (felt phenomenal for 2 days than stopped sleeping)” In context ↗ Insomnia from treatment
- Rapamycin / sirolimus“I started 2 mg of Rapamycin I feel so sick.” In context ↗ Side effects
- Keto and low-carb diets“Iv tried keto for 3 days and I am so unbelievably nauseous omg.” In context ↗ Gut side effects
- D-ribose“it’s caused aweful tummy symptoms, terrible pain and bloating” In context ↗ Gut side effects
- Flu vaccine“Iv gotten side effects and problems from flu vaxs ... after the flu shot reworked my chron pain to a more severe level” Side effects
- Nortriptyline (Pamelor)“Mine got worse due to my ssri nortiptyline, common side effect is dry mouth” In context ↗ Side effects
- Cannabis (THC, marijuana)“I get seizures and feel not so great if it’s straight thc.” In context ↗ Other
- Pregabalin (Lyrica)“last time I was in it I wanted to eat my hand I was so hungry” In context ↗ Side effects
- Metformin“I took 1/2 a dose yesterday and Iv had severe burning in legs.” In context ↗ Nerve pain
Symptoms mentioned
Anxiety & low moodGut problemsPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- POTS & dysautonomia
Iv had pots and me/cfs post a concussion 5 years ago.
In context ↗ - Post-exertional malaise
I exercised w a pots phsyio (graded exercise) for 4 years. It made my me/cfs worse.
In context ↗ - Sleep problems
Iv had terrible insomnia and now it’s just getting worse and worse no matter what I try.
In context ↗ - Pain & fibromyalgia
my pain decreases w keto. Doesn’t go away but does decrease.
In context ↗ - Gut problems
I have some minor sibo and d ribose seems to be irritating it?
In context ↗ - Anxiety & low mood
my depression is probably the worst it’s ever been
In context ↗