Tony
Still working on it all..
- Messages
- 363
- Location
- Melbourne, Australia
Profile:
51yo male diagnosed with ME/CFS in 2001. Unable to work since.
fructose malabsorption (low fructose diet required)
gut dysbiosis with high levels of prevotella and streptococcus, low in bifidobacterium
high cortisol and high cortisol to dhea ratio (100mg DHEA)
potassium/sodium ion channelopathy (Lamictal)
high level of sleep disturbance (Rivotril & Stilnox)
continuous low level headache (migraine like prior to taking Lamictal)
cognitive difficulties (injecting hydroxy B12 is excellent)
mild orthostatic intolerance (much worse years ago)
positive for EBV and CPN (titers unknown)
lowered oxygen saturation
low energy levels…
I’m able enough to look after myself, do the shopping twice per week, comfortably walk 15-20 minutes per day. I read (including use of the computer) about 2-4 hrs per day, with breaks. I consider myself to be 30% functional, a little more on the odd better day, less on others.
I sleep 10.5 - 12 hours overnight, sometimes more.
While up and down, I’m fairly stable so long as stress is minimal.
Physically demanding tasks are beyond me. A small amount of light gardening occasionally or short duration house cleaning is pretty much my limit.
I currently take 100 mg DHEA per day, Lamictal (anti-seizure drug), magnesium glycinate tabs, potassium chloride, digestive enzyme tabs and betaine HCL with meals, bifido probiotic, injectable hydroxocobalamin B12 each day, folic acid, vitamin E, C, CoQ10, a multivitamin, zinc, alpha lipoic acid and acetyl l carnitine.
For sleep I take Rivotril 500mcg (klonopin) and Stilnox 5mg (Ambien)
My diet is necessarily low in fructose which means no wheat, onions, green beans, honey, apples or pears etc.
51yo male diagnosed with ME/CFS in 2001. Unable to work since.
fructose malabsorption (low fructose diet required)
gut dysbiosis with high levels of prevotella and streptococcus, low in bifidobacterium
high cortisol and high cortisol to dhea ratio (100mg DHEA)
potassium/sodium ion channelopathy (Lamictal)
high level of sleep disturbance (Rivotril & Stilnox)
continuous low level headache (migraine like prior to taking Lamictal)
cognitive difficulties (injecting hydroxy B12 is excellent)
mild orthostatic intolerance (much worse years ago)
positive for EBV and CPN (titers unknown)
lowered oxygen saturation
low energy levels…
I’m able enough to look after myself, do the shopping twice per week, comfortably walk 15-20 minutes per day. I read (including use of the computer) about 2-4 hrs per day, with breaks. I consider myself to be 30% functional, a little more on the odd better day, less on others.
I sleep 10.5 - 12 hours overnight, sometimes more.
While up and down, I’m fairly stable so long as stress is minimal.
Physically demanding tasks are beyond me. A small amount of light gardening occasionally or short duration house cleaning is pretty much my limit.
I currently take 100 mg DHEA per day, Lamictal (anti-seizure drug), magnesium glycinate tabs, potassium chloride, digestive enzyme tabs and betaine HCL with meals, bifido probiotic, injectable hydroxocobalamin B12 each day, folic acid, vitamin E, C, CoQ10, a multivitamin, zinc, alpha lipoic acid and acetyl l carnitine.
For sleep I take Rivotril 500mcg (klonopin) and Stilnox 5mg (Ambien)
My diet is necessarily low in fructose which means no wheat, onions, green beans, honey, apples or pears etc.