ME/CFS
Severe → no benefitIll for 15 years
Housebound with ME/CFS about 15 years; hyperthermia and antibiotics gave no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 15 years
- Last post
- Apr 2021
In their words
- Condition: ME/CFS
I belive lyme disease caused my CFS
In context ↗ - At worst: Severe
subsequently crashed hard and became housebound
In context ↗ - Now: No benefit
My CFS Symptoms did not change!
In context ↗ - Began after: nothing they could name
got it when I was 14, was a milder form back then
In context ↗
Read from 11 of their posts and comments; links to the 9 this page draws on
Summary
Ill since age 14, Tide 98322 was a mild case until aggressive exercise, advised for depression, crashed them into housebound illness that has lasted about 15 years. A Lyme disease diagnosis brought several courses of antibiotics and costly hyperthermia therapy, which turned the Lyme tests negative and cleared nerve pain in the legs. CFS symptoms and fibro-like pain were unchanged, and they remained bed- and housebound.
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What they tried
Also tried
Giving up refined sugars, cereal flour and diary (and meat)· Helpedintermittent fasting 6/18 and often 4/20· HelpedBerberin· HelpedGreen Tea extract· HelpedQ10· HelpedNicotinamide Riboside· HelpedTrimethylglycine· HelpedResveratol· Helpedmicrodosing lsd· Helpedantidepressants· No changehyperthermia treatment· No changeketo· Worseexercised agressively· Much worse
Their words about each treatment
- antidepressants · No change
antidepressants did not work
In context ↗ - exercised agressively · Much worse
exercised agressively to overcome my ... subsequently crashed hard and became housebound.
In context ↗ - keto · Worse
I tried keto for 3 month and it lowered my enegy/wellbeing baseline down quite a bit.
In context ↗ - Giving up refined sugars, cereal flour and diary (and meat) · Helped
Giving up refined sugars, cereal flour and diary (and meat) helped me with the soreness and the sensation of inflammation.
In context ↗ - intermittent fasting 6/18 and often 4/20 · Helped
intermittent fasting with a good amount of unprocessed carbs ... helped me a lot
In context ↗ - Berberin · Helped
I have brought my ido activity back to norm with Berberin
In context ↗ - Green Tea extract · Helped
Green Tea extract (brings it back to norm if too low) ... this works for me
In context ↗ - Q10 · Helped
High doses Q10 seems to be beneficial for my PEM and mental clarity.
In context ↗ - Nicotinamide Riboside · Helped
Nicotinamide Riboside + Trimethylglycine + Resveratol elevates my energy a bit.
In context ↗ - microdosing lsd · Helped
microdosing lsd might be worth trying. Elevates Energy, clears my mind a bit, reduces pain and works wonders for my CFS induced depression.
In context ↗ - hyperthermia treatment · No change
After I got a costly hyperthermia theraphy the results of the tests changed to negative and stayed that way until now. My CFS Symptoms did not change!
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| age 14 | illness began as a milder formgot it when I was 14, was a milder form back thenIn context ↗ | Mild | |
| — | crashed hard after aggressive exercise and became houseboundexercised agressively to overcome my "depression" because antidepressants did not work and psychiatrist recommended it as the very best antidepressant, subsequently crashed hard and became housebound.In context ↗ | Severe | |
| March 2021 | nerve pain in the legs vanished after Lyme treatmentAfter I got a costly hyperthermia theraphy the results of the tests changed to negative and stayed that way until now. My CFS Symptoms did not change! Just nerve pain in my legs vanished.In context ↗ | Severe | Hyperthermia and sauna |
| April 2021 | still bed/housebound with unchanged CFS symptomsI am still bed/housebound, just the nervepain got better.In context ↗ | Severe |
Adverse events
- Keto and low-carb diets“I tried keto for 3 month and it lowered my enegy/wellbeing baseline down quite a bit. In my case it was damaging for my health” In context ↗ Made symptoms worse
- Keto and low-carb diets“The diet increased soreness and the general sensation of inflammation of my body, higher fatigue” In context ↗ Made symptoms worse
- Keto and low-carb diets“after 3 month I got a gastritis, which wore off after I changed the diet” In context ↗ Gut side effects
- Everyday exercise and activity“exercised agressively to overcome my "depression" ... subsequently crashed hard and became housebound” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsNeuropathy & tinglingPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
High doses Q10 seems to be beneficial for my PEM and mental clarity.
In context ↗ - Brain fog
Elevates Energy, clears my mind a bit, reduces pain
In context ↗ - Pain & fibromyalgia
The fibro like pain stayed.
In context ↗ - Neuropathy & tingling
Just nerve pain in my legs vanished.
In context ↗ - Gut problems
after 3 month I got a gastritis, which wore off after I changed the diet
In context ↗ - Anxiety & low mood
works wonders for my CFS induced depression
In context ↗