ME/CFS
Severe → much betterIll 8 years before improving or writingNeeds ongoing treatment
Bedridden with ME/CFS, now mild-moderate after low-dose naltrexone and mestinon
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 8 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I’ve had ME/CFS for 8 years
In context ↗ - At worst: Severe
now I can barely get out of bed to eat and go to the bathroom
In context ↗ - Now: Much better
mestinon is taking me from mod/severe to mod/mild. Leaving the house more often and sometimes even doing short walks.
In context ↗
Read from 62 of their posts and comments; links to the 32 this page draws on
Summary
A California woman fell ill around 2017, mild for 4.5 years until exercising through PEM, then COVID and RSV, left her bedridden. Low-dose naltrexone from late 2023 eased most pain and lifted her from severe to moderate; mestinon and antihistamines later brought her to mild-moderate. Endometriosis surgery also helped, though missing an antihistamine dose put her back in bed for 36 hours.
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What they tried
What they credit
Also tried
Paxlovid· Helped a lot · wore offIbuprofen· HelpedNAC· HelpedGabapentin· Helpedincreasing my ferritin level· Helpedfamotidine· HelpedCOVID vaccine doses· Worseantidepressants· Worsecontinuous birth control pills· WorseGuanfacine· Worseprogesterone· Worsehard core hiking, backpacking, weight lifting, HIIT, and swimming· Much worseCBT· Not saidpelvic floor therapy· Not saidpacing· Not saidIUD· Not saidelectrolytes· Not saidquercitin· Not saidluteolin· Not said
Their words about each treatment
- hard core hiking, backpacking, weight lifting, HIIT, and swimming · Much worse
The the hard core hiking, backpacking, weight lifting, HIIT, and swimming just made me bed bound.
In context ↗ - COVID vaccine doses · Worse
I’ve done 4 doses, all of which laid me out flat for days and days. Majorly swollen and painful lymph nodes and severe weakness.
In context ↗ - CBT · Not said
My therapist very quickly concluded my symptoms were not psychological in origin and he encouraged me over and over to seek further testing with my doctor.
In context ↗ - antidepressants · Worse
I tried antidepressants and my symptoms got worse!
In context ↗ - pelvic floor therapy · Not said
I already had many months of pelvic floor therapy
In context ↗ - pacing · Not said
I now have my diagnosis and have learned about pacing.
In context ↗ - continuous birth control pills · Worse
I tried continuous birth control pills at the suggestion of a gyno (I reacted badly but still gave it over a 3 month trial)
In context ↗ - Ibuprofen · Helped
When I can’t stand the flu-like symptoms I take Ibuprofen and it does seem to help substantially.
In context ↗ - Paxlovid · Helped a lot
I actually had a little but of remission for 5 weeks after taking it while I had covid for the second time.
In context ↗ - NAC · Helped
Recently I’ve started taking NAC, first thing in the morning on an empty stomach and it’s reduced my sugar cravings (and appetite) significantly
In context ↗ - LDN · Helped a lot
I started taking 0.1 mg LDN at night and it eliminated my pain.
In context ↗ - high-protein breakfast · Helped
I’ve noticed if I start the day with a lot of protein (30-40 g) I feel so much better the rest of the day.
In context ↗ - IUD · Not said
The endo specialist inserted an IUD which I expelled due to heavy blood flow within a few months.
In context ↗ - hysterectomy with endometriosis excision · Helped
he excised all the endo and removed the uterus (and fallopian tubes) ... I am more functional now and have more decent days
In context ↗ - Gabapentin · Helped
I took 300 mg of Gabapentin pre-and post major surgery and it seemed to calm down my nervous system
In context ↗ - electrolytes · Not said
I make sure to take tons of electrolytes and antioxidants if it’s a bad day.
In context ↗ - increasing my ferritin level · Helped
LDN and increasing my ferritin level seems to be helping my brain fog quite a bit recently.
In context ↗ - Guanfacine · Worse
Guanfacine has some MC stabilizing effects but lower my blood pressure too much.
In context ↗ - mestinon · Helped a lot
mestinon is taking me from mod/severe to mod/mild. Leaving the house more often and sometimes even doing short walks.
In context ↗ - progesterone · Worse
I took progesterone for about 4 or 5 weeks and it just made me sleep all day long.
In context ↗ - antihistamines · Helped
I started taking antihistamines in July and suddenly my orthostatic intolerance and sudden sleepiness improved.
In context ↗ - famotidine · Helped
I did a short trial of fexofenadine and famotidine this summer, and my orthostatic intolerance, brain fog, and depression got better.
In context ↗ - quercitin · Not said
I can’t say because I started taking the quercitin at the same time as the histamine blockers (July).
In context ↗ - luteolin · Not said
I added luteolin after watching the Stanford ME/CFS symposium (Sept).
In context ↗
Approaches: H1 antihistamines · POTS medication · Diet · Surgery & structural
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 |
|---|---|---|---|
| 2017 | ME/CFS began; mild for about 4.5 yearsbeing mild for 4.5 yrsIn context ↗ | Mild | |
| 2022 | kept exercising through PEM, then COVID and RSV; became bedboundThe the hard core hiking, backpacking, weight lifting, HIIT, and swimming just made me bed bound.In context ↗ | Severe | Everyday exercise and activity |
| late 2023 | five weeks of remission during second COVID infection on paxlovidI had an marked increase in functionality for 5 weeks after I took paxlovid for covid.In context ↗ | Moderate | Paxlovid / nirmatrelvir |
| early 2024 | back to bedbound for weeks and monthsBeing bedbound for weeks/months on end is absolute horror.In context ↗ | Severe | |
| early 2024 | endometriosis excision and hysterectomy; more decent daysI am more functional now and have more decent days (more moderate than severe).In context ↗ | Moderate | Other surgery (adrenal, lung, venoplasty) |
| February 2025 | low-dose naltrexone, titrated slowly over 15 months, eased painI am at 1.5 mg LDN and have gone from severe to moderate.In context ↗ | Moderate | Low-dose naltrexone |
| April 2026 | mestinon lifted her from moderate-severe to mild-moderatemestinon is taking me from mod/severe to mod/mild. Leaving the house more often and sometimes even doing short walks.In context ↗ | Mild | Mestinon / pyridostigmine |
| June 2026 | fatigue worsened for a couple of monthsBut my fatigue has been pretty bad for a couple months now.In context ↗ | Moderate | |
| July 2026 | antihistamines improved orthostatic intolerance, brain fog and depressionmy orthostatic intolerance, brain fog, and depression got betterIn context ↗ | Mild | H1 antihistamines (unspecified) |
| October 2026 | missed antihistamine dose caused a 36-hour flare; blockers then increasedwithin 7.5 hours triggered a terrible OI flare that kept me in bed for over 36 hoursIn context ↗ | Moderate | H1 antihistamines (unspecified) |
Adverse events
- COVID vaccination as treatment“I’ve done 4 doses, all of which laid me out flat for days and days. Majorly swollen and painful lymph nodes and severe weakness.” In context ↗ Side effects
- COVID vaccination as treatment“my body “overreacts” even to the covid vax, so I’m always running up a fever with severe body aches” In context ↗ Side effects
- Everyday exercise and activity“The the hard core hiking, backpacking, weight lifting, HIIT, and swimming just made me bed bound.” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“I tried antidepressants and my symptoms got worse!” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“I tried a couple SSRIs and either they made me sleep all day or not sleep at all at the lowest dose the pills came in.” In context ↗ Side effects
- Low-dose naltrexone“I got a boost of energy and decrease in body aches the first couple weeks then crashed hard for a month.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I had to start 0.01 mg to avoid bad side effects.” In context ↗ Side effects
- Guanfacine“Guanfacine has some MC stabilizing effects but lower my blood pressure too much.” In context ↗ Low blood pressure or fainting
- Hormonal birth control (unspecified)“I tried continuous birth control pills at the suggestion of a gyno (I reacted badly but still gave it over a 3 month trial)” In context ↗ Side effects
- IUD (hormonal or copper)“The endo specialist inserted an IUD which I expelled due to heavy blood flow within a few months.” In context ↗ Other
- Progesterone (Prometrium, Utrogestan)“I took progesterone for about 4 or 5 weeks and it just made me sleep all day long. I was taking it at night. Had to stop due to the extreme day time sleepiness.” In context ↗ Side effects
- Mestinon / pyridostigmine“Honestly, it seems to have made me super anxious the first week. I stopped and restarted several weeks later but much lower doses.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsHeart symptoms & palpitationsPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
Prior to the diagnosis I was forcing my self into crashes repeatedly.
In context ↗ - Brain fog
My brain fog is so bad nowadays
In context ↗ - POTS & dysautonomia
now feeling like my POTS is affecting me a lot more
In context ↗ - Sleep problems
7 hrs. Much better than 5.5-6 as before
In context ↗ - Pain & fibromyalgia
Joint pain is almost non existent.
In context ↗ - Breathlessness
completely out of breath for a week or longer during my period
In context ↗ - Heart symptoms & palpitations
I was dizzy, had tachycardia and was feeling unbearable fatigued
In context ↗ - Anxiety & low mood
Increased inflammation is likely the culprit of depression-like symptoms during a crash.
In context ↗ - Flu-like symptoms
When I can’t stand the flu-like symptoms I take Ibuprofen
In context ↗
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