ME/CFS
Moderate → relapsedIll 9 months before improving or writingNeeds ongoing treatment
Housebound with ME/CFS, improved on LDN and memantine then relapsed
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 9 months
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
My ME/CFS came a bit later than my other symptoms
In context ↗ - At worst: Moderate
I was homebound for months and lost so much weight from not being able to eat from GI distress.
In context ↗ - Now: Relapsed
I had a brief period of feeling better, but I pushed myself not knowing I was experiencing PEM and have been in a steady decline since.
In context ↗ - Began after: COVID
August 2024: Acute Infection.
In context ↗ - Says they never had: Mast cell (MCAS) & allergies
I do not have MCAS
Read from 245 of their posts and comments; links to the 60 this page draws on
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Summary
After COVID in August 2024 they were housebound for months with severe GI flares, then fatigue, body and joint pain and brain fog. They credited low-dose naltrexone and memantine for lifting them from housebound to roughly 75–80% recovered, with semaglutide easing their gut, and later relapsed after coming off guanfacine and then LDN.
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What they tried
What they credit
LDN· Helped a lot · mainradical rest· Helped a lotMemantine· Helped · mainsemaglutide (GLP)· Helpednicotine protocol· Helpedpacing· Helpedmeat and rice / carnivore diet· HelpedSIBO and histamine friendly diet· Helpedfasting· Helpediron infusion· HelpedVisible armband/app· Helpedphysical therapy· Helped
Also tried
cocaine· Helped a lotCymbalta (duloxetine)· Helped · wore offXanax (alprazolam) / Valium· HelpedXanax (alprazolam) / Valium· HelpedMestinon· Helpedmethocarbamol (Robaxin)· Helpedcodeine· HelpedIberogast· Helpedketamine· Helped · wore offtrigger point injections· Helpedrogaine· HelpedViviscal· Helpedbirth control· HelpedTENS unit· Helpedmassage· Helpedweighted blanket· HelpedGuanfacine· No changeNAC· No changepregabalin· No changegabapentin· No changecyclobenzaprine· No changetricyclic (TCA)· No changeNSAIDs· No changeBuspar· No changeMagnesium Glysinate· No changedigestive enzymes· No changeantihistamines· No changeLSD· No changeBotox· No changecannabis· Worsevitamin D· WorseMetformin· Not saidprobiotic· Not saidTruniagen (nicotinamide riboside)· Not saidBerberine· Not saidB12· Not saidQuercitin· Not saidBeef Kidney· Not saidalpha lipoic acid· Not saidCPAP· Not saidsalt, electrolytes and compression· Not saidsalt, electrolytes and compression· Not saidspironolactone· Not saidEMDR· Not saidbox breathing / meditation· Not saidlaxatives· Not saidmodafinil· Not saidWellbutrin· Not saidAdderall· Not said
Their words about each treatment
- LDN · Helped a lot
LDN I think is what turned the corner for me.
In context ↗ - Memantine · Helped
holy shit. I feel like I can think straight again.
In context ↗ - Guanfacine · No change
I didn't notice a difference with the guanfacine
In context ↗ - NAC · No change
NAC unfortunately hasn't done much for me.
In context ↗ - semaglutide (GLP) · Helped
GLPs were a game changer for me.
In context ↗ - Metformin · Not said
It may or may not be helping - I'm on a very low dose though cause the GI effects are gnarly.
In context ↗ - nicotine protocol · Helped
It's helping a lot! That and nicotine.
In context ↗ - radical rest · Helped a lot
I ended up feeling great after two months of rest and with new meds.
In context ↗ - pacing · Helped
Pacing has been helpful and as long as I don't over exert I've been able to eat again.
In context ↗ - Cymbalta (duloxetine) · Helped
I do think it's decreased my body pain a good amount and makes me less depressed
In context ↗ - Xanax (alprazolam) / Valium · Helped
Xanax gets me through the worst of the GI symptoms and panic and weird dysautonomia stuff.
In context ↗ - Mestinon · Helped
It helped a lot with my dysautonomia symptoms, can cause diarrhea but it subsided for me quite quickly.
In context ↗ - pregabalin · No change
I take 225mg at night to help me sleep. I haven't had improvements in symptoms unfortunately.
In context ↗ - gabapentin · No change
pregabalin and gabapentin make me so slow
In context ↗ - cyclobenzaprine · No change
Cyclobenzaprine, gabapentin, methocarbamol does nothing for me.
In context ↗ - methocarbamol (Robaxin) · Helped
Robaxin taking the edge off.
In context ↗ - tricyclic (TCA) · No change
We also trialed a tricyclic with no luck.
In context ↗ - codeine · Helped
I use codeine for breakthrough pain and it's the only thing that keeps me functional during the worst days.
In context ↗ - NSAIDs · No change
NSAIDs don't help.
In context ↗ - Buspar · No change
Got off Buspar cause didn't think it was helping.
In context ↗ - Iberogast · Helped
iberogast has been really helpful for me
In context ↗ - meat and rice / carnivore diet · Helped
I move to a meat and rice diet and this seems to help a lot.
In context ↗ - SIBO and histamine friendly diet · Helped
I consulted a dietitian and she suggested a SIBO and histamine friendly diet.
In context ↗ - fasting · Helped
I try to do fasts one day a week. This helps a lot.
In context ↗ - iron infusion · Helped
I definitely felt better post infusion
In context ↗ - probiotic · Not said
I have been taking pre and pro biotics but I'm not sure if it's doing anything.
In context ↗ - Magnesium Glysinate · No change
I take magnesium and it does nothing.
In context ↗ - digestive enzymes · No change
I tried digestive enzymes and supplements. Nothing worked.
In context ↗ - alpha lipoic acid · Not said
Alpha lipoic acid
In context ↗ - Visible armband/app · Helped
The Visible arm band has really helped me a lot with that.
In context ↗ - CPAP · Not said
I didn't notice a difference with it.
In context ↗ - antihistamines · No change
I havent had much success with antihistamines though
In context ↗ - salt, electrolytes and compression · Not said
I've been trying to increase my salts but I haven't seen a decrease in symptoms
In context ↗ - ketamine · Helped
it helps so much with the pain and I'd rather use it in very limited quantities than opiods
In context ↗ - cannabis · Worse
Weed makes my pain unbearable.
In context ↗ - cocaine · Helped a lot
completely eliminated the feeling of long covid
In context ↗ - LSD · No change
Nothing changed in terms of symptoms
In context ↗ - Botox · No change
done Botox since my traps are literal concrete
In context ↗ - trigger point injections · Helped
Trigger point injections kinda help.
In context ↗ - physical therapy · Helped
I was doing PT since I do have loss of curvature in my cervical spine and was doing better
In context ↗ - rogaine · Helped
I just started using rogaine.
In context ↗ - Viviscal · Helped
I also take Viviscal which does help.
In context ↗ - birth control · Helped
Continuous birth control has been one of the best things for me.
In context ↗ - spironolactone · Not said
I also had to get off spironolactone which noticeably improved my electrolyte balance
In context ↗ - vitamin D · Worse
issues with some meds upsetting my GI in the past (specifically vitamin D)
In context ↗ - TENS unit · Helped
tens units can be helpful to get circulation back in there
In context ↗ - massage · Helped
My pain does decrease when I can tolerate massage
In context ↗ - weighted blanket · Helped
Weighted blanket helps my body pain.
In context ↗ - EMDR · Not said
I did EMDR for cPTSD from an abusive relationship for nearly two years (prior to getting LC).
In context ↗ - box breathing / meditation · Not said
Box breathing and benzos were the only thing that helped
In context ↗ - laxatives · Not said
taking laxatives since fiber does seem to fuck up my stomach
In context ↗ - modafinil · Not said
I tapered off modafinil
In context ↗ - Wellbutrin · Not said
Wellbutrin many years for MDD
In context ↗ - Adderall · Not said
Wellbutrin/Adderall (taken before long covid)
In context ↗
Approaches: GLP-1 drugs · Diet · Other drugs and medicines · Pacing · Physiotherapy and rehab · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| August 2024 | acute COVID with severe GI symptomsAugust 2024: Acute Infection.In context ↗ | Mild | |
| December 2024 | body broke down after holiday travelafter traveling for the holidays it was like my body just broke downIn context ↗ | Moderate | |
| April 2025 | crashed after an event/tripGot back from our trip and get the worst body aches and exhaustion and the brain fog is absolutely horrific.In context ↗ | Moderate | |
| May 2025 | finally feeling good, able to leave the houseI went from being homebound for like four months to actually leaving my house for activities.In context ↗ | Mild | Low-dose naltrexone |
| summer 2025 | crashed after festivals and parties, housebound six monthsI went from being relatively normal to housebound for about six months because I didn’t realize I was in a boom bust cycle.In context ↗ | Moderate | |
| November 2025 | came out of the long crash, about 60% capacityI’m still pretty bad but maybe I’m at 60% functional capacity and not 30%.In context ↗ | Moderate | Low-dose naltrexone |
| January 2026 | Cymbalta eased pain and mood, started walking the dog againI do think it’s decreased my body pain a good amount and makes me less depressed which is nice.In context ↗ | Mild | |
| February 2026 | bedridden again after daily walks and late nightsA month of daily short walks and a few late nights and I’m bedridden again.In context ↗ | Moderate | |
| August 2026 | full PEM crashI’m in a full on PEM crash right now.In context ↗ | Moderate | |
| October 2026 | doing more than before but constant painI can do more now, but it’s still probably 50% of what I was doing before.In context ↗ | Moderate |
Adverse events
- Metformin“While Metformin hasn’t been super well tolerated (I stay on a low dose) ... I’m on a very low dose though cause the GI effects are gnarly.” Gut side effects
- Vitamin D and sun exposure“I’ve had issues with some meds upsetting my GI in the past (specifically vitamin D)” In context ↗ Gut side effects
- Memantine (Namenda)“Mild constipation is the only thing I’ve noticed, which is easy enough to manage.” In context ↗ Gut side effects
- Low-dose naltrexone“The only side effect I got was whacky dreams lol but it went away pretty quickly. ... Yeah the insomnia is weird too. It ebbs and flows for me.” Insomnia from treatment
- Nicotine patches“I was doing nicotine and I stopped for a bit cause my GI symptoms got bad and the nicotine compounded it” In context ↗ Made symptoms worse
- Cannabis (THC, marijuana)“Surprisingly, cannabis makes my pain so much worse. ... makes my pain exponentially worse.” Made symptoms worse
- Alprazolam (Xanax)“The times I have tried to get off of it before I had appropriate replacement meds or strategies in place - did not go well.” In context ↗ Withdrawal problems
- Hormonal birth control (unspecified)“I accidentally ran out of my active pills a few months ago and had a period and literally wanted to die ... when I was switching BC, I accidentally didn’t skip my period and it was AWFUL. my symptoms were soooo much worse.” Made symptoms worse
- Pregabalin (Lyrica), Gabapentin (Neurontin)“pregabalin and gabapentin make me so slow. The brain fog and memory issues are bad and I didn’t even realize it until I stopped.” In context ↗ Side effects
- Mestinon / pyridostigmine“can cause diarrhea but it subsided for me quite quickly. ... Nothing other than I had the shits for like a second and it went away within a few days.” Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
I’m in a full on PEM crash right now.
In context ↗ - Brain fog
the anhedonia and brain fog are back
In context ↗ - POTS & dysautonomia
I’m definitely having bad POTS symptoms.
In context ↗ - Sleep problems
I’ve always had issues sleeping but I do think long covid made it worse.
In context ↗ - Pain & fibromyalgia
I have been in chronic all over body pain since July.
In context ↗ - Headaches & migraine
I got mine for migraines cause I failed meds so that’s covered for me now.
In context ↗ - Gut problems
I still have bad bloating, occasional diarrhea, and am nauseated most days.
In context ↗ - Light & noise sensitivity
My other symptoms (GI, lightheadness, air hunger, light sensitivity) haven’t been as bad though!
In context ↗ - Breathlessness
I haven’t had air hunger since starting it
In context ↗ - Heart symptoms & palpitations
I would also have heart rate issues and flushing. This never fully went away.
In context ↗ - Muscle weakness
If I have that my body is lead and on fire sort of muscle heaviness
In context ↗ - Neuropathy & tingling
I started getting the pins and needles now too.
In context ↗ - Anxiety & low mood
I’ve been in a really bad depression the last few months.
In context ↗ - Flu-like symptoms
I get a sore throat
In context ↗ - Temperature regulation
My toes will be that of a corpse and then I’ll be sweating a few minutes later.
In context ↗ - Vision problems
I started getting tunnel vision
In context ↗ - Hair loss
I’ve started rogaine. The hair growth process is a slow one but it is starting to come in.
In context ↗
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