ME/CFS
Severe → somewhat betterIll 7 years before improving or writing
Bedridden with ME/CFS and daily seizures, now somewhat better with guanfacine and LDN
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 7 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
then became sick with ME/CFS in 2019 and haven’t had a normal day since
In context ↗ - At worst: Severe
I was bedridden for about six months, having non-epileptic seizures up to six hours a day at my very worst.
In context ↗ - Now: Somewhat better
I’m moderate. I’m mostly homebound. Leave the house maybe twice a month for appointments. Occasionally can do something fun outside of the house for a couple of hours
In context ↗ - Began after: another virus
one day I got a flu-like virus and life as I knew it just ended
Read from 31 of their posts and comments; links to the 18 this page draws on
Summary
Mesa 34909 fell ill with ME/CFS in 2019 after a flu-like virus, following decades of probable mild symptoms after mono at 16. They were bedridden for about six months with non-epileptic seizures up to six hours a day. They credit guanfacine for cutting the seizures and a slowly titrated LDN as life changing, letting them leave the house for short outings. They remain moderate and mostly homebound.
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What they tried
What they credit
Also tried
rapamycin· Helped a lotmast cell stabilizing supplements· Helpedpotent antioxidant supplements· Helpedantioxidant-rich diet· Helpedmodafinil· HelpedUbrelvy· Helpedantihistamine· HelpedTHC (heavy indica)· Helpeddextromethorphan· Helpedcompounded topical estradiol/progesterone/testosterone cream· Helpedcompounded topical estradiol/progesterone/testosterone cream· Helpedcompounded topical estradiol/progesterone/testosterone cream· Helpedtherapy· Helpedself-compassion practice· Helpedoral progesterone· WorseLumbar puncture (CSF drainage)· Worsecardiac rehabilitation· Much worseQulipta· Not saidrest· Not saidBearable app· Not said
Their words about each treatment
- guanfacine · Helped a lot
once I started guanfacine, my non-epileptic seizures decreased and my function level improved drastically
In context ↗ - rapamycin · Helped a lot
I tried it for a few weeks and the increase in my energy was significant
In context ↗ - LDN · Helped a lot
Second time, I dissolved it in water and started at 0.1 mg ... It has been life changing.
In context ↗ - mast cell stabilizing supplements · Helped
I’m also treating MCAS with mast cell stabilizing supplements to further reduce my POTS. ... My supplement regimen definitely helps me feel better.
- potent antioxidant supplements · Helped
Taking supplements that are potent antioxidants, combined with a diet that is high in antioxidant foods, has helped my cholesterol and triglyceride levels.
In context ↗ - antioxidant-rich diet · Helped
combined with a diet that is high in antioxidant foods, has helped my cholesterol and triglyceride levels
In context ↗ - modafinil · Helped
A full pill (200 mg) can make me shaky, so I prefer to take a half pill. ... Definitely have less brain fog when I take it.
In context ↗ - Ubrelvy · Helped
Currently trialing it as a rescue medication ... Seems to work for me, although I do need two doses.
In context ↗ - Qulipta · Not said
in addition to daily Qulipta as my preventative
In context ↗ - antihistamine · Helped
this is usually when I use an antihistamine or THC (heavy indica) to get some rest
In context ↗ - THC (heavy indica) · Helped
I use an antihistamine or THC (heavy indica) to get some rest
In context ↗ - dextromethorphan · Helped
It’s surprisingly helpful for body pain. ... I take it for ME/CFS
In context ↗ - oral progesterone · Worse
Oral progesterone caused severe depression for me.
In context ↗ - compounded topical estradiol/progesterone/testosterone cream · Helped
A compounded topical cream (estradiol/progesterone/testosterone) is working well for me. ... I have slightly more energy currently
In context ↗ - cardiac rehabilitation · Much worse
being sent to cardiac rehabilitation two weeks later (literally did the intake testing of riding a recumbent stationary bike for a couple of minutes and couldn’t get into the car afterwards)
In context ↗ - therapy · Helped
Yes. It’s been incredibly helpful.
In context ↗ - self-compassion practice · Helped
Sometimes I lean into self-compassion (Kristin Neff, Tara Brach, and Pema Chodron help me a lot).
In context ↗ - rest · Not said
maybe I just naturally recovered after resting
In context ↗ - Bearable app · Not said
I use the Bearable app
In context ↗ - Lumbar puncture (CSF drainage) · Worse
I became bedridden after a lumbar puncture and being sent to cardiac rehabilitation two weeks later
In context ↗
Approaches: Other drugs and medicines
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. 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 |
|---|---|---|---|
| 2019 | ME/CFS began after a flu-like virusbecame sick with ME/CFS in 2019 and haven’t had a normal day sinceIn context ↗ | Not stated | |
| — | bedridden for six months with non-epileptic seizures after a lumbar puncture and cardiac rehabI was bedridden for about six months, having non-epileptic seizures up to six hours a day at my very worst.In context ↗ | Severe | |
| — | seizures decreased and function improved on guanfacine; still houseboundonce I started guanfacine, my non-epileptic seizures decreased and my function level improved drasticallyIn context ↗ | Moderate | Guanfacine |
| 2026-05 | able to leave the house for short outings on slowly titrated LDNLDN has been AMAZING for me. I have been able to leave the house for short fun outings againIn context ↗ | Moderate | Low-dose naltrexone |
| 2026-09-05 | moderate, mostly homebound, occasional short outings in a wheelchairI’m moderate. I’m mostly homebound. Leave the house maybe twice a month for appointments.In context ↗ | Moderate |
Adverse events
- Rapamycin / sirolimus“Unfortunately, I had some side effects even at 1 mg a week and discontinued it” In context ↗ Side effects
- Rapamycin / sirolimus“I have hyperadrenergic POTS, though, and it flared it up so much that I discontinued it” In context ↗ Made symptoms worse
- Rapamycin / sirolimus“Rapamycin caused a significant increase in the frequency and severity of my nonepileptic seizures.” In context ↗ Made symptoms worse
- Lumbar puncture (CSF drainage)“I became bedridden after a lumbar puncture and being sent to cardiac rehabilitation two weeks later” In context ↗ Made symptoms worse
- Graded rehab and self-made programmes“literally did the intake testing of riding a recumbent stationary bike for a couple of minutes and couldn’t get into the car afterwards” In context ↗ Made symptoms worse
- Low-dose naltrexone“I started LDN the first time at 3 mg or something and felt awful.” In context ↗ Made symptoms worse
- Low-dose naltrexone“Once I got over 5 mg, I did have some side effects and had to go back down ... it seems to exacerbate it above 4.8 mg” In context ↗ Side effects
- Modafinil / armodafinil“A full pill (200 mg) can make me shaky, so I prefer to take a half pill.” In context ↗ Side effects
- Ubrogepant (Ubrelvy)“It’s sedating—it knocked me out—but that could be the combination of Qulipta and Ubrelvy.” In context ↗ Side effects
- Progesterone (Prometrium, Utrogestan)“Oral progesterone caused severe depression for me.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Brain fogFlu-like symptomsHeadaches & migraineLight & noise sensitivityMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaSleep problems
Their words about their symptoms
- POTS & dysautonomia
I have hyperadrenergic POTS, though, and it flared it up so much that I discontinued it
In context ↗ - Mast cell (MCAS) & allergies
I’m also treating MCAS with mast cell stabilizing supplements to further reduce my POTS
In context ↗ - Brain fog
Definitely have less brain fog when I take it.
In context ↗ - Pain & fibromyalgia
It’s surprisingly helpful for body pain.
In context ↗ - Sleep problems
this is usually when I use an antihistamine or THC (heavy indica) to get some rest
In context ↗ - Headaches & migraine
If I have a migraine or have gotten to the point of sensory overwhelm, I can only handle listening, not watching a show.
In context ↗ - Flu-like symptoms
needing to take a day or two off of work about once a month due to flu-like symptoms that never turned into a full-blown viral infection
In context ↗
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