ME/CFS
Moderate → no benefitIll for 4 yearsNeeds ongoing treatment
ME/CFS with PEM and POTS, still ill with constant anxiety despite herbs and ketotifen
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 4 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
I have been suffering from CFS, PEM and POTS since 2022.
In context ↗ - At worst: Moderate
back to moderate/severe CFS, unfortunately
In context ↗ - Now: No benefit
I feel like living in anxiety and fear is my body's/spirit's only state of living, it's horrible
In context ↗ - Began after: COVID
I've been sick with LC for years now
Read from 20 of their posts and comments; links to the 16 this page draws on
Summary
Spruce 33891, a woman in the EU, has had ME/CFS with PEM and POTS since 2022; a second COVID left her highly medicine-sensitive. Antiparasitic herbs including Artemisia gave a short energy boost, and a ketogenic diet helped until she returned to carbs. Lumbrokinase caused adrenaline surges and worse POTS, naltrexone was not tolerated, and low-dose ketotifen helped her sleep. She was still ill in 2026 with constant anxiety.
Ask Miruvor AI
What they tried
Also tried
anti-parasitic herbs (Artemisia absinthium)· Helped a lot · wore offketo diet· Helped · wore offKetotifen· Helpedcoherent breathing and yoga nidra· Helpedlumbrokinase (bolouke)· WorseMidrodine· Worseivabradine· WorseActivate charcoal· Worsebenfotiamine· WorseLDN· Much worseSSRI· Not saidXanax· Not said
Their words about each treatment
- SSRI · Not said
I took them for 6 months only in 2024 by my nervous system is still stuck in fight or flight badly
In context ↗ - anti-parasitic herbs (Artemisia absinthium) · Helped a lot
it felt like a miracle for a couple of days! The treatment was for 14 days only
In context ↗ - LDN · Much worse
I went slowly up to 1 mg and made my physical fatigue and tiredness/sleepiness/sleep so much worse that I had to stop it :/
In context ↗ - keto diet · Helped
I also felt much better while on it, then back to eating carbs, back to moderate/severe CFS
In context ↗ - lumbrokinase (bolouke) · Worse
I have been on lumbro for 5 days (one pill a day) and been having high anxiety/adrenaline
In context ↗ - Midrodine · Worse
Midrodine Gave me bad sfx at only 15 mg.
In context ↗ - ivabradine · Worse
Midrodine Gave me bad sfx at only 15 mg. Also ivabradine.
In context ↗ - Ketotifen · Helped
Ketotifenr low dose helps me sleep i still wake up at 3 am and 6 am but much less intense adrenaline and can fall back asleep
In context ↗ - Activate charcoal · Worse
Activate charcoal causes me headaches
In context ↗ - benfotiamine · Worse
I took benfotiamine by supersmart and it gave me vertigo when moving my head in bed, horrible horrible.
In context ↗ - coherent breathing and yoga nidra · Helped
I have been doing only coherent breathing and yoga nidra which relaxes me, yet when the session ends I go back to being on high alert
In context ↗
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. 1 step has no time and sits in story order between the steps around it. 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 |
|---|---|---|---|
| 2022 | ME/CFS with PEM and POTS beginsI have been suffering from CFS, PEM and POTS since 2022.In context ↗ | Moderate | |
| 2023 | second COVID infection; medicine sensitivity worsenedSince my second COVID my med sensitivity is off the charts :(In context ↗ | Moderate | |
| 2024 | six months of SSRI and Xanax, nervous system left in fight or flightI took them for 6 months only in 2024 by my nervous system is still stuck in fight or flight badlyIn context ↗ | Moderate | Antidepressants (unspecified) |
| 2024 | short energy boost from a 14-day antiparasitic herb courseit felt like a miracle for a couple of daysIn context ↗ | Not stated | Antiparasitics |
| — | felt much better on a ketogenic dietI also felt much better while on itIn context ↗ | Not stated | Keto and low-carb diets |
| — | returned to carbs and went back to moderate/severe CFSback to eating carbs, back to moderate/severe CFS, unfortunatelyIn context ↗ | Moderate | |
| May 2025 | five days of lumbrokinase brought adrenaline surges and worse POTSI took bolouke for 5 days only and my pOTS is worse and Im scared, also had high adrenaline from itIn context ↗ | Moderate | Lumbrokinase |
| September 2026 | still ill with constant fight-or-flight anxietyI feel like living in anxiety and fear is my body's/spirit's only state of living, it's horribleIn context ↗ | Moderate |
Adverse events
- Low-dose naltrexone“I went slowly up to 1 mg and made my physical fatigue and tiredness/sleepiness/sleep so much worse that I had to stop it :/” In context ↗ Made symptoms worse
- Low-dose naltrexone“LDN doesn't work for me, even at 0.25 mg it gives me sleepiness during day time :(” In context ↗ Side effects
- Lumbrokinase“I have been on lumbro for 5 days (one pill a day) and been having high anxiety/adrenaline” In context ↗ Mood or psychiatric effects
- Lumbrokinase“I took bolouke for 5 days only and my pOTS is worse and Im scared, also had high adrenaline from it” In context ↗ Made symptoms worse
- Lumbrokinase“apart from the horrible adrenaline now also worse ed sitting and standing HR. :((( and headache, shortened sleep.” In context ↗ Insomnia from treatment
- Midodrine“Midrodine Gave me bad sfx at only 15 mg.” In context ↗ Side effects
- Midodrine“He would like me to take midodrine daily but it gives me headaches :/” In context ↗ Side effects
- Ivabradine“Also ivabradine. Since my second COVID my med sensitivity is off the charts :(” In context ↗ Side effects
- Thiamine / benfotiamine“I took benfotiamine by supersmart and it gave me vertigo when moving my head in bed, horrible horrible.” In context ↗ Side effects
- “Activate charcoal causes me headaches” In context ↗ Side effects
- Antidepressants (unspecified)“I took them for 6 months only in 2024 by my nervous system is still stuck in fight or flight badly” In context ↗ Withdrawal problems
- Alprazolam (Xanax)“I took them for 6 months only in 2024 by my nervous system is still stuck in fight or flight badly” In context ↗ Withdrawal problems
Symptoms mentioned
Anxiety & low moodGut problemsMast cell (MCAS) & allergiesPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I have been suffering from CFS, PEM and POTS since 2022.
In context ↗ - Anxiety & low mood
my nervous system is still stuck in fight or flight badly
In context ↗ - Sleep problems
I cannot sleep without it
In context ↗ - Mast cell (MCAS) & allergies
how strong I get triggered by the mast cells, in the morning
In context ↗ - Temperature regulation
I can't even be in the sun without developing sunstroke side effects
In context ↗ - Gut problems
toxins, klebsiella overgrowth
In context ↗