Mild ME/CFS after mono, unable to work, still no clear benefit from supplements

Condition

ME/CFS

At worst

Moderate (mostly housebound)

Ill for

Not stated

Last post

Oct 2026

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What they tried

Their path

What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.

Adverse events

• “I would end up fainting (one time at home, one time in the lobby), and awaking about 5 minutes later, only to continue coming in out of consciousness, while my blood pressure dropped really low.” In context ↗ Low blood pressure or fainting
• “So my last two experiences with anesthesia have gotten me a ride in an ambulance to the ER!” In context ↗ ER visit
• Meditation, yoga, breathwork“I have been trying to do the wim hof breathing daily as well. I'm starting to get the hang of it and it feels good while I'm doing it, but seems kind of exhausting afterwards. Also makes my upper back/neck pain noticeably increase also.” In context ↗ Made symptoms worse
• Neck exercises and stretches (chin tucks), Inversion table“stretching my neck can lead me to be nauseous, or I can be very loopy for a couple of hours after exercising or stretching the neck area.” In context ↗ Made symptoms worse
• CoQ10 / ubiquinol“I find I seem to crash really hard 4 or 5 hours after taking it, but it could be unrelated/coincidental” In context ↗ Made symptoms worse
• Duloxetine (Cymbalta), Nefazodone (Serzone), Doxepin (Sinequan, Silenor), Bupropion (Wellbutrin), Dextromethorphan-bupropion (Auvelity), Vortioxetine (Trintellix), Milnacipran (Savella)“Which don't help me at all, and cause side effects, including making me even more tired on a daily basis than I already was.” In context ↗ Side effects
• Maca root“Most recently I've been taking 10g of Maca every day (which is a high dose), noticing 0 change, other than maybe more headaches.” In context ↗ Side effects
• Low-dose Abilify / aripiprazole“it made my left eye twitch involuntarily, which was scary. I also recall being hungry all the time.” In context ↗ Side effects
• Low-dose Abilify / aripiprazole“The worst for me being racing heartbeat (akathisia), high anxiety, both of those leading to insomnia.” In context ↗ Heart rhythm problems
• Low-dose Abilify / aripiprazole“It increased my heart rate and made me more anxious” In context ↗ Mood or psychiatric effects
• Low-dose Abilify / aripiprazole“I had trouble sleeping at .75 mg, so insomnia at 2mg is definitely not out of the ordinary.” In context ↗ Insomnia from treatment
• Low-dose Abilify / aripiprazole“I think it helped my CFS a lot for a month or two, then followed that up with a month of two of feeling miserable and majorly fatigued” In context ↗ Made symptoms worse
• Vortioxetine (Trintellix)“When my fatigue started really getting worse was almost exactly when I stopped taking Trintellix, but not sure how much that was the cause, if at all.” In context ↗ Withdrawal problems
• Amphetamine salts (Adderall)“It also stays in my system for like 16 hours, even though it's supposed to last for about 4 hours, I think. My heart is still pumping when it's 3am and I'm trying to sleep.” In context ↗ Insomnia from treatment
• COVID vaccination as treatment“But about 12 hours after the shot I developed a fever, shivering for hours, chills, then eventually being too hot & nauseated, back and forth. Achy all over.” In context ↗ Side effects
• Ketamine“I suddenly kept going in and out of consciousness and ended up surrounded by EMTs and was taken in an ambulance to the ER” In context ↗ ER visit
• Modafinil / armodafinil“I took Modafinil yesterday and just slept all day & night 😴 - Also a lot of weird 'pulsating' going on in my head.” In context ↗ Side effects
• Low-dose naltrexone“When I take LDN however, the pain is increased times 4.” In context ↗ Made symptoms worse
• Testosterone“I'm definitely not feeling any better, in fact I'm feeling worse” In context ↗ Made symptoms worse
• Testosterone“I'm in month 6-7 of testosterone replacement therapy, and feeling pretty miserable every day. Full body fever-like aches primarily” In context ↗ Made symptoms worse
• Testosterone“I did have a bad reaction the one time I tried a subQ injection.” In context ↗ Side effects
• Corticosteroid pulses“the downside is I basically sleep 15-16 hours a day, and eat like crazy when I am awake.” In context ↗ Side effects
• Corticosteroid pulses“I have been thinking about (trigger warning) >!suicide!< a bunch today, NGL.” In context ↗ Suicidal thoughts or attempt
• Corticosteroid pulses“I just slept 30 out of the last 38 hours, and I just feel like shit in general. Achy all over, headache, heavy brain fog.” In context ↗ Side effects
• Corticosteroid pulses“a couple months ago when I had to take Prednisone (also an immunosuppressant), I immediately got a bad cold.” In context ↗ Other
• Monolaurin (Lauricidin)“The first week I took the monolaurin it really kicked my butt, so I was hoping it was a herx/die-off type of reaction” In context ↗ Herx / die-off reaction
• Duloxetine (Cymbalta)“but unfortunately the 2nd month I started sleeping 15+ hours a day, and I gained 20lbs in a very short period of time despite hardly eating anything.” In context ↗ Side effects
• Duloxetine (Cymbalta)“Getting off Cymbalta was *brutal*, they really need a warning on some of these drugs” In context ↗ Withdrawal problems
• Cimetidine (Tagamet)“I tried cimetidine for a while and ended up breaking out in hives all over my body, and I went to urgent care” In context ↗ Allergic reaction / anaphylaxis
• Ketamine“Full body exhaustion and muscle soreness/aches, and light-headedness/low blood pressure.” In context ↗ Side effects
• Nicotine patches“the first few days of the nicotine patch have been kinda tough! Just been very tired, physically and mentally, and my head is really spacey.” In context ↗ Side effects
• Nicotine patches“but then during the few day break period after round 1, I got worse and am still doing poorly a week in a half later.” In context ↗ Made symptoms worse
• Diphenhydramine (Benadryl)“I took half a Benadryl the other night and slept 14 hours, and then still felt groggy and exhausted the rest of the day” In context ↗ Side effects
• Low-dose naltrexone“I'm experiencing fever-like full body aches, but I'm not too surprised given my past history with LDN.” In context ↗ Side effects
• Low-dose naltrexone“But I took it for 6 months and if anything I got worse, so I stopped taking it after finishing my last bottle recently.” In context ↗ Made symptoms worse
• Diphenhydramine (Benadryl)“it knocked me the hell out. I slept 13 hours, and 24 hours after taking the antihistamine, I'm still really groggy and tired.” In context ↗ Side effects
• NAC (N-acetylcysteine)“made me feel kind of flat, emotionally, if I recall.” In context ↗ Side effects
• Lamotrigine (Lamictal)“I'm giving it a try, currently on week 3, but the insomnia has been awful, and I feel miserable, fever-like body aches.” In context ↗ Insomnia from treatment
• Lamotrigine (Lamictal)“I get the pins and needles thing on the top of my right foot/ankle, and I was wondering why that started...now I know!” In context ↗ Nerve pain
• Tirzepatide (Mounjaro, Zepbound), Retatrutide“Both tirzepatide and retatrutride seem to kick my butt pretty hard, in terms of fatigue and full-body aches.” In context ↗ Side effects
• Tirzepatide (Mounjaro, Zepbound), Retatrutide“The constipation on Tirz and Reta was crazy, and I haven't recovered even after a year off GLP-1s” In context ↗ Gut side effects
• Retatrutide“Retatrutide has those side effects as well but to a lesser extent, with the added heart rate increase & palpitations, which were uncomfortable.” In context ↗ Heart rhythm problems
• Semaglutide (Ozempic, Wegovy)“so far after a couple months, all I've had are side effects with no benefits 🤷 no reduced hunger or weight loss, but extra fatigue and bad constipation.” In context ↗ Side effects
• Tirzepatide (Mounjaro, Zepbound), Retatrutide, Semaglutide (Ozempic, Wegovy)“I started back on one recently and I've been down in the dumps mood-wise, for sure, but there are other big factors involved in that as well.” In context ↗ Mood or psychiatric effects
• Tirzepatide (Mounjaro, Zepbound)“Still feeling extra run down and achy, as I did the first go around” In context ↗ Side effects
• “I'm still exhausted after two days of resting.” In context ↗ Side effects
• “anesthesia hits me like a ton of bricks and my CFS definitely regresses, or rather I am very tired for weeks or longer after anesthesia.” In context ↗ Made symptoms worse
• “I did seem to crash pretty hard after my previous procedure (using anesthesia) last August, and I wasn't able to do much for 5 months after that.” In context ↗ Made symptoms worse
• Tadalafil (Cialis)“Cialis/tadalafil always gave me headaches at any dose, and I am not prone to headaches” In context ↗ Side effects
• Clonazepam (Klonopin)“I've been feeling completely wiped out, no matter how much I sleep.” In context ↗ Side effects
• Daridorexant (Quviviq)“Quviviq works, in that I'll get 8, 9, 10+ hours of sleep (sometimes 12+ hours, might be a sleep paralysis thing where I don't feel I can get up), but yeah then I just feel miserable the whole next day” In context ↗ Side effects
• Creatine“It seems to tax my body more than anything. Also known for contributing to insomnia for some people.” In context ↗ Made symptoms worse
• Vitamin B complex“Anything with multi B vitamins in it crashes me pretty good” In context ↗ Made symptoms worse
• Milnacipran (Savella)“I tried starting savella (or rather the cheap generic milnacipran, as savella is very expensive) a couple weeks ago at a small dose (12.5 daily) but immediately had a lot of difficulty sleeping and heart rate issues.” In context ↗ Insomnia from treatment
• Methylene blue“they all seem to make me feel worse; CoQ10, Methylene Blue, multi B-vitamins, NAD+, and even experimental peptides such as SS-31 & MOTS-C” In context ↗ Made symptoms worse
• NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP)“they all seem to make me feel worse; CoQ10, Methylene Blue, multi B-vitamins, NAD+, and even experimental peptides such as SS-31 & MOTS-C” In context ↗ Made symptoms worse
• SS-31 (elamipretide), MOTS-c“they all seem to make me feel worse; CoQ10, Methylene Blue, multi B-vitamins, NAD+, and even experimental peptides such as SS-31 & MOTS-C” In context ↗ Made symptoms worse
• CoQ10 / ubiquinol“Makes me sleepy all the time 🥱” In context ↗ Side effects
• Bupropion (Wellbutrin)“Wellbutrin killed my libido and it never fully recovered” In context ↗ Side effects
• Dextromethorphan-bupropion (Auvelity)“it caused a scary psychosis type of reaction, like a bad psychedelic trip, and I was stuck in it for like 8 hours or more, and then couldn't sleep for a total of 36 hours.” In context ↗ Mood or psychiatric effects
• Melatonin“even a very small dose of melatonin causes me to have a big hangover effect the following day” In context ↗ Side effects
• HCG (human chorionic gonadotropin)“I tried HCG monotherapy last year but it just made me feel foggy and 'out of it'” In context ↗ Side effects
• Propranolol (Inderal)“all the beta blocker '-olol' named drugs gave me insomnia” In context ↗ Insomnia from treatment
• Valtrex / valacyclovir“this combo has been kicking my butt the first 5 weeks” In context ↗ Side effects
• Celecoxib (Celebrex)“this combo has been kicking my butt the first 5 weeks” In context ↗ Side effects
• Valtrex / valacyclovir“I'm a bit over 2 months in to a trial of Valtrex+celebrex, but it is not going well. A lot thougher on my body than anticipated” In context ↗ Made symptoms worse
• Valtrex / valacyclovir“I'm still not sure about the viral die off/herx reaction, I would like to think that's the reason for the feeling worse” In context ↗ Herx / die-off reaction

Symptoms mentioned

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