Utterly incapacitated most of the time with ME/CFS, now about 90% after doxycycline
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 7 years
- Last post
- Sep 2016
In their words
- Condition: ME/CFS
accute CFS symptoms
In context ↗ - At worst: Severe
worsened over a period of 4 weeks until I was utterly incapacitated most of the time
In context ↗ - Now: Near normal
am I recovered...not totally but 90%
In context ↗ - Began after: another virus
17 years ago, I developed pneumonia , the post vira fatigue worsened over a period of 4 weeks
Summary
Rain 50250 fell ill in 1998 after pneumonia; post-viral fatigue worsened over four weeks until he was utterly incapacitated most of the time. He credited long-term doxycycline for his first good days and years of fishing, longboarding and snowboarding for activating his adrenal system, reaching about 90% by 2015. He was largely symptom free then, though viruses, stress or extreme exertion could still set him back.
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What they tried
What they credit
Also tried
Their words about each treatment
- Long term doxycycline · Helped
1 year solid and a follow-up 6 month round. ... Had my first "good days" with this.
In context ↗ - Fish oils · Helped
Eat well, take a multivitamin, and fish oil everyday. ... They will help, not much at first
- Cq10 · Helped
Fish oils, Cq10, etc. ... They will help, not much at first
In context ↗ - multivitamin · Helped
Nutritional supplements ... Eat well, take a multivitamin, and fish oil everyday.
- Ritalin · Helped
#4 Ritalin ... Use ritialn type drugs sparingly, when you are stronger.
- Adrenalin & exercise · Helped a lot
In my case, I beleive that adrenalin jump started my immune system. It took 3 years.
In context ↗ - yoga class followed by Pilates · Much worse
Be careful a yoga class followed by Pilates cost me four months.
In context ↗
Approaches: Antibiotics · Exercise and activity · Stimulants · Supplements
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. The chart starts 1 month after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|---|
| 1998 | developed pneumonia17 years ago, I developed pneumoniaIn context ↗ | Not stated | |
| 1998, four weeks later | post-viral fatigue worsened until he was utterly incapacitatedthe post vira fatigue worsened over a period of 4 weeks until I was utterly incapacitated most of the timeIn context ↗ | Severe | |
| year 4 of illness (about 2002) | first good days on long-term doxycyclineHad my first "good days" with this.In context ↗ | Severe | Doxycycline (Vibramycin) |
| almost 7 years in (about 2005) | moments of his old lifeIt was almost 7 years until I experienced moments of "my old life".In context ↗ | Moderate | |
| — | four months of hell after a yoga class and Pilatesa yoga class followed by Pilates cost me four monthsIn context ↗ | Not stated | |
| 2015 | about 90% recovered after years of fishing, longboarding and snowboarding17 years in..am I recovered...not totally but 90%.In context ↗ | Near normal | Everyday exercise and activity |
| 2016-09-06 | still working as a stagehand and longboarding57 year old stagehand, kayaker, contracter, longboarder and father of two kids.In context ↗ | Near normal |
Adverse events
- Everyday exercise and activity“Added fishing, small adrenal hit when I caught a fish. (Big cfs blowback from the exertion as well)” In context ↗ Made symptoms worse
- Everyday exercise and activity“Good adrenalin hit though Still was worse for days/weeks after.” In context ↗ Made symptoms worse
- Everyday exercise and activity“Yes they hurt. Yes I'd be a mess for a weeks afterwords.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
viruses and high stress, or insanely high physical exertion will throw me back down the rabbit whole
In context ↗ - Brain fog
My systems shut down. (or slowed down) Sex,digestion, cognitive, endocrine..
In context ↗ - Anxiety & low mood
I still suffer from (for lack of a better word) ptsd, from unmitigating horrors of cfs.
In context ↗
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