ME/CFS 30 years, mostly couch- or bed-bound, somewhat better with quercetin and mestinon
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 30 years
- Last post
- Mar 2024
In their words
- Condition: ME/CFS
quickly discovered how it not only helped me walk but also helped my me/cfs symptoms
In context ↗ - At worst: Severe
The rest of the week I’m primarily couch bound/bed bound.
In context ↗ - Now: Somewhat better
I recently began mestinon and have been experiencing improvement in many of these symptoms ... The rest of the week I’m primarily couch bound/bed bound.
Read from 11 of their posts and comments; links to the 11 this page draws on
Summary
Breeze 99398 fell ill in high school about 30 years ago, with memory and grades dropping overnight, and is now couch- or bed-bound most of each week. Quercetin ended years of nausea and lost appetite within days, and mestinon improved muscle control, walking and speech, though a three-week break reversed that within days. Cold therapy made them significantly worse; heat helps.
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What they tried
What they credit
Also tried
Their words about each treatment
- Heat (electric blanket, hot water bottles, heat plasters) · Helped
Heat also helps for me. I have a heated blanket on almost 24/7 and hot water bottles
In context ↗ - TENS machine · Much worse
I tried one off and on for months for my arms and hands about 20 years ago, turned out I had SFN and it only made matters much worse.
In context ↗ - Cold therapy · Worse
cold is one of my biggest triggers, attempting this therapy made me significantly worse for some time
In context ↗ - Gabapentin · Worse
My experience with both gabapentin and benzodiazepine has been almost the same as yours, I agree with you.
In context ↗ - Electrolytes · Helped
Increasing electrolytes beyond what I was already having (Dysautonomia).
In context ↗ - Amitriptyline · Helped
Sleep management which for me is amitriptyline, each prolonged crash has required getting sleep back on track
In context ↗ - Complete rest · Helped
Truly getting it into my thick head that complete rest is a crucial and vital activity, not a passive one.
In context ↗ - Medication that turned out to be a histamine stabiliser · Helped
I began taking them, extreeeeemley cautiously for an EDS related issue to do with spinal and leg issues, and quickly discovered how it not only helped me walk but also helped my me/cfs symptoms.
In context ↗ - H1 antihistamines · Not said
upped h1 and h2 but it was the almost immediate (2 days) effect of quercetin that really shocked me!
In context ↗ - Quercetin · Helped
Within a couple of days on Quercentin it was the first time in several years I felt a strong hunger sensation emerge, and can now actually keep meals down without symptoms/comsequences!
In context ↗ - Mestinon · Helped a lot
I recently began mestinon and have been experiencing improvement in many of these symptoms
In context ↗ - Codeine · Helped
I have EDS so I take codeine as part of my pain management but I need a high dose for any effect
In context ↗ - Antibiotics · Helped
I feel so much better on them. Before beginning POTS treatments, antibiotics would regulate my erratic heartbeat and blood pressure too.
In context ↗ - Warm climate / tropics · Helped
once I’m in the tropics my health and symptoms improve, sitting in a greenhouse too
In context ↗
Approaches: POTS medication · Antibiotics · Pacing · Tricyclic antidepressants
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. 3 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 |
|---|---|---|---|
| high school, roughly 30 years before 2024 | became ill in high school; grades and comprehension dropped overnightI became sick in high school roughly 30 years ago and felt I became ‘dumb’ almost overnight. My grades dropped dramaticallyIn context ↗ | Mild | |
| 2023-11-18 | significantly worse for some time after trying cold therapyattempting this therapy made me significantly worse for some timeIn context ↗ | Not stated | |
| 2024-03-09 | hunger and ability to keep meals down returned within days on quercetinWithin a couple of days on Quercentin it was the first time in several years I felt a strong hunger sensation emergeIn context ↗ | Not stated | Baicalein and quercetin |
| 2024-03-11 | mestinon improved muscle control, walking short distances and speechI found control over my muscles and muscle strength improve, allowed me to walk short distances again tooIn context ↗ | Moderate | Mestinon / pyridostigmine |
| 2024-03-11 | lost cognitive function within days of a three-week mestinon breakI’m currently on a 3 week break from mestinon and it was only a matter of a couple of days before I lost this functionIn context ↗ | Not stated | |
| 2024-03-23 | couch- or bed-bound most of the week, with two days of activity on codeineThe rest of the week I’m primarily couch bound/bed bound.In context ↗ | Severe |
Adverse events
- TENS machine“I tried one off and on for months for my arms and hands about 20 years ago, turned out I had SFN and it only made matters much worse.” In context ↗ Made symptoms worse
- Cryotherapy and cold exposure“attempting this therapy made me significantly worse for some time.” In context ↗ Made symptoms worse
- Gabapentin (Neurontin)“My experience with both gabapentin and benzodiazepine has been almost the same as yours, I agree with you.” In context ↗ Made symptoms worse
- Antibiotics (unspecified)“I’m allergic to most antibiotics (mcas), only a couple I can take so they’re kept for strictly emergencies only.” In context ↗ Allergic reaction / anaphylaxis
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I didn’t understand PEM so well back then
In context ↗ - Brain fog
My memory is shot, along with many other cognitive symptoms that have only worsened slowly overtime.
In context ↗ - POTS & dysautonomia
The improvement in pots symptoms at 30mg
In context ↗ - Mast cell (MCAS) & allergies
I’m allergic to most antibiotics (mcas), only a couple I can take so they’re kept for strictly emergencies only.
In context ↗ - Sleep problems
Sleep management which for me is amitriptyline
In context ↗ - Pain & fibromyalgia
I take codeine as part of my pain management ... frankly it barely touches the pain
In context ↗ - Gut problems
Constant nausea and frequent vomiting or syncope after small meals, and zero sense of appetite ever
In context ↗ - Temperature regulation
I’m almost always in a state of mild hypothermia unless I have direct heat on me
In context ↗ - Muscle weakness
I found control over my muscles and muscle strength improve, allowed me to walk short distances again too
In context ↗ - Heart symptoms & palpitations
antibiotics would regulate my erratic heartbeat and blood pressure too
In context ↗ - Neuropathy & tingling
turned out I had SFN and it only made matters much worse
In context ↗
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