ME/CFS
Severe → somewhat betterNeeds ongoing treatment
Bedbound with ME/CFS at worst, now moderate with fludrocortisone and antihistamines
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
I have cfs, dsyautonomia & mast cell issues (no formal diagnosis).
In context ↗ - At worst: Severe
I was bed bound previously but I am moderate right now.
In context ↗ - Now: Somewhat better
I was bed bound previously but I am moderate right now.
In context ↗
Read from 47 of their posts and comments; links to the 32 this page draws on
Summary
She described years of CFS with dysautonomia, mast cell problems and Lyme, Bartonella and Babesia, bed bound at her worst and moderate by 2026. Egg freezing around 2016 made her much worse and full-dose antibiotics made her very sick. Fludrocortisone, which she called her savior, antihistamines, cannabis and craniosacral therapy all helped.
Ask Miruvor AI
What they tried
What they credit
Also tried
weed· Helpedabx· Helpedtherapeutic ketamine· Helpedlow histamine diet· Helpedantifungals· Helpedtherapist· HelpedDxm· HelpedCraniosacral physical therapy· HelpedKPV· Helpedhydroxazine· HelpedVitanica Bladder Ease· Helpedaloe and marshmallow root· Helpedaloe and marshmallow root· HelpedMadofinil· No changehyperbaric oxygen· No changeTA-1· No changeattention meds (Adderall, Ritalin)· Worseattention meds (Adderall, Ritalin)· Worseminocycline· WorseNAC & glutathione· WorseNAC & glutathione· WorseNAD+ IV· WorseLDN· WorseKetotifen· Worseiv methylene blue· Not saidAzitromyosin & Rifampin· Not saidpacing· Not saidlow oxolate diet· Not said
Their words about each treatment
- attention meds (Adderall, Ritalin) · Worse
They cause me to over work myself then crash for days.
In context ↗ - weed · Helped
Good for pain & uplifted mood.
In context ↗ - abx · Helped
I have terrible depression that is alleviated by abx.
In context ↗ - therapeutic ketamine · Helped
I have turned to therapeutic ketamine & it’s really helped me to get my head on straight.
In context ↗ - minocycline · Worse
I tried minocycline & Rifampin real fast the first time.
In context ↗ - iv methylene blue · Not said
It seemed promising but I can’t tell if my health got worse from other things or if the effects wore off?
In context ↗ - Azitromyosin & Rifampin · Not said
I’m starting back up on Azitromyosin & Rifampin. I’m treating Lyme & Bart atm.
In context ↗ - low histamine diet · Helped
Yeah since I switched low histamine & eat smaller meals it’s gotten better.
In context ↗ - antifungals · Helped
Im currently on antifungals. I’m not craving carbs & sugars 24/7 for the first time.
In context ↗ - Madofinil · No change
Not much. They made me aggravated & tired after.
In context ↗ - NAC & glutathione · Worse
I can’t tolerate glutathione either. Makes me physically & mentally ill.
In context ↗ - D-ribose · Helped
D-ribose with oxygenating magnesium supplement is pretty good. Not much but it helps a bit.
In context ↗ - therapist · Helped
I have a therapist to help me with the cognitive component of fatigue & it’s great for me.
In context ↗ - Dxm · Helped
So I’ve been taking Dxm for a cold & I feel pretty good.
In context ↗ - hyperbaric oxygen · No change
I did like 14+ of them. It didn’t hurt me, but it didn’t do any long term good at all.
In context ↗ - low dose corticosteroids / prednisone · Helped
I’m taking a 1/4 of the prescribed dose & seeing some mild improvement.
In context ↗ - NAD+ IV · Worse
NaD+ IV made me flare.
In context ↗ - LDN · Worse
I started at 0.5 mg & it was too much for my CFS. I couldn’t sleep. Had nightmares& felt worse.
In context ↗ - Zyrtec · Helped
Have you tried any antihistamines? Zyrtec helps me the most.
In context ↗ - Ketotifen · Worse
Ketotifen on the other hand I can’t tolerate.
In context ↗ - Fludrocortisone (Florinef) · Helped a lot
I have orthostatic hypotension & Fludrocortisone is my savior. I could barely walk without it.
In context ↗ - Meyers cocktail · Helped
I do great with a Meyers cocktail though.
In context ↗ - Semaglutide microdose · Helped
Semaglutide microdose has been helping.
In context ↗ - pacing · Not said
Sit and lay down every moment that I humanly can. Bring a stool if I need it.
In context ↗ - Craniosacral physical therapy · Helped
Craniosacral physical therapy is helping me a lot right now.
In context ↗ - TA-1 · No change
I’ve done TA-1 3 times with no relief.
In context ↗ - hydroxazine · Helped
Those plus hydroxazine help my bladder issues the most when in a flare.
In context ↗ - Vitanica Bladder Ease · Helped
Vitanica Bladder Ease herbal blend is what my functional med dr recommended and it really helps me.
In context ↗ - aloe and marshmallow root · Helped
I started with aloe and marshmallow root which help, but not as much as that blend.
In context ↗ - low oxolate diet · Not said
Also I sometimes have to eat low oxolate.
In context ↗
Approaches: GLP-1 drugs · H1 antihistamines · POTS medication · 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 |
|---|---|---|---|
| — | CFS; bed bound at her worstI was bed bound previously but I am moderate right now.In context ↗ | Severe | |
| about 2016 | egg freezing made her CFS much worseI think freezing my eggs triggered my CFS to get much worse.In context ↗ | Not stated | |
| 2023-03-28 | very sick after starting antibiotics at standard dosesFirst time on abx I tried I started too hard by using standard dosages. I got way too sick.In context ↗ | Not stated | |
| 2025-04-18 | fludrocortisone improved quality of lifeI have orthostatic hypotension & Fludrocortisone is my savior. I could barely walk without it.In context ↗ | Moderate | Fludrocortisone / Florinef |
| 2025-08-21 | humidity in her apartment; could barely standMy apartment got a humidity issue due to a broken heat pump & I felt so bad. I could barely stand.In context ↗ | Severe | |
| 2026-02-18 | craniosacral physical therapy stopped full migrainesCraniosacral physical therapy is helping me a lot right now.In context ↗ | Moderate | |
| 2026-09-25 | semaglutide helping, NAD+ made her worseSemaglutide microdose has been helping. KPV is okay. The worst was NAD+ which I did in clinic. I got worse.In context ↗ | Moderate | Semaglutide (Ozempic, Wegovy) |
Adverse events
- Antibiotics (unspecified), Rifampin (rifampicin)“First time on abx I tried I started too hard by using standard dosages. I got way too sick.” In context ↗ Made symptoms worse
- Amphetamine salts (Adderall)“Small doses give me a bit of an edge; but a come down that sometimes results in a crash” In context ↗ Made symptoms worse
- Modafinil / armodafinil“Not much. They made me aggravated & tired after.” In context ↗ Mood or psychiatric effects
- Amphetamine salts (Adderall), Methylphenidate (Ritalin, Concerta)“I can’t tolerate them anymore. They cause me to over work myself then crash for days.” In context ↗ Made symptoms worse
- NAC (N-acetylcysteine)“I’m sensitive to sulphur & can’t tolerate NAC as a result.” In context ↗ Made symptoms worse
- Glutathione“I can’t tolerate glutathione either. Makes me physically & mentally ill.” In context ↗ Made symptoms worse
- Cannabis (THC, marijuana)“Blue Dream was like smoking a panic attack.” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“I started at 0.5 mg & it was too much for my CFS. I couldn’t sleep. Had nightmares& felt worse.” In context ↗ Made symptoms worse
- “I think freezing my eggs triggered my CFS to get much worse.” In context ↗ Made symptoms worse
- NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP)“The worst was NAD+ which I did in clinic. I got worse.” In context ↗ Made symptoms worse
- Ketotifen (Zaditen)“Ketotifen on the other hand I can’t tolerate.” In context ↗ Made symptoms worse
- Amphetamine salts (Adderall), Methylphenidate (Ritalin, Concerta)“Somehow the meds that use to make me feel clear headed now make me feel like active death.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
They cause me to over work myself then crash for days.
In context ↗ - Brain fog
I have intermittent brain fog
In context ↗ - POTS & dysautonomia
I have orthostatic hypotension & Fludrocortisone is my savior.
In context ↗ - Mast cell (MCAS) & allergies
I have cfs, dsyautonomia & mast cell issues (no formal diagnosis).
In context ↗ - Sleep problems
But I never got REM sleep.
In context ↗ - Pain & fibromyalgia
All my joints hurt & I get more tired.
In context ↗ - Headaches & migraine
I haven’t had a full migraine/pain attack
In context ↗ - Anxiety & low mood
I have terrible depression that is alleviated by abx.
In context ↗ - Heart symptoms & palpitations
my heart feels like it’s beating out of my chest
In context ↗
Ask Miruvor AI
Similar stories
-
Bedridden then housebound with long COVID, now much better with pacing and LDN
They had ME/CFS from EBV since age 19 and were mild until COVID in February 2020 left them bedridden then housebound for years; exercise advice in 2021 disabled them further. Pacing, rest, low-histamine diet, supplements, LDN, semaglutide and peptides lifted…
-
Bedbound with ME/CFS, now somewhat better after heart ablation and low-dose naltrexone
Got mono at 17 in 2007 and developed ME/CFS at 22, becoming bedbound from 2012 to 2017. A heart ablation in 2017 brought a big improvement that took over a year to show, though she slipped back to moderate during the pandemic and again in 2025. Low-dose…
-
Mostly bedbound with long COVID, now much better with antihistamines and low-histamine diet
Lynx 15587, working overseas for an American company, developed long COVID after a December 2023 infection and was mostly bed bound for the first two months. Daily H1/H2 antihistamines, a low-histamine diet, rest and supplements made her functional enough to…
-
Not enough detail to draw a path
Long COVID with brain fog, nearly back to normal after fish oil and nattokinase
A 27-year-old in Nashville developed long COVID after a COVID infection in September 2025, with near-syncope, chest symptoms, brain fog and breathlessness that took her to the ER several times. Daily fish oil, nattokinase, aspirin, antihistamines, magnesium…