Still going.. just. (posted Dying from ME/CFS a year ago)

Hi all. I posted about a year ago a series about my severely ill health with the worst ME/CFS and liver problems.

It's a year later and I'm miraculously still here, but still extremely ill.

just after I wrote that series of posts on here, I was flown to a Hospital here in Sydney (in July 12). They did masses of tests over nearly 4 weeks and found nothing new. Sent home to die once again.

After I got out I hung on to my life by starting to take 20grams a day of ester C powder, and small doses of Iodine. I guess the Iodine helped the metabolism via thyroid beacuse for a while i got a small boost of energy (that means able to talk more to people and feel less unstable, not go for long walks outside).

I've continued the Vit C but now down to 10-12 grams or so. Not much diff with more. Tiny doses of Sam-e have been also saving my life during this time. however its been getting harder as even the tiniest bit now causes a systemic detox & inflamation reaction. But without it my system almost shuts down its entire function.

I live in bed, 23+ hours a day.

Had Amalgams out in August last year at holistic dentist after hospital (was extremely hard). Haven't started any chelation except Vit C.

Extremely intolerant to NAC/gltuathione unfortunately as they would save my life (mine is near zero).

Probably almost zero bile production - digestion is worse than anyone I've met. Feels like rocks are dragging through my organs when I eat food (liver, pancreas). Protein and fat are 100x worse than rice & veg, but even they do it.

Stools extremely pale yellow. Can't tolerate bile acid supps, they make my brain & body even more irritated than they are.

Living on partial elemental diet - made my own Sugar free home made version (Humapro amino's & starch), works well and is another reason I'm still alive and not an absolute skeleton.

Can't liver flush, far too weak, would end up in ER or worse. I barely tolerate a spoonful of fat let alone half a cup.

I've done mini flushes with lemon juice and Phos Choline - this causes a flare but DEFINITELY moves some things through the liver, as the entire body flows better after one. Also very taxing on the system though, can't do too often.

Cortisone dependent (full adrenal insufficiency) and take it via an insulin pump as since 2008 the tablets ruined my gut.

Allergic to everything, pretty much the earth. Everything I take in except water causes an immune response - often even flu like. I can feel very calmed down after 12hrs water fast, then a small amount of food will flare the whole body with inflammation (you can feel bubble lumps of fluid ALL over my body in all the joints and muscles within 20-40 minutes of eating, and it stays for 4-8 hours).

Very intolerant to salyicilates - pretty much poison - so all herbal remedies are out, they all make me much worse.

coffee enemas wipe my energy out severely afterwards and don't give much benefit.

I do Epsom Salts and bicarb baths, sometimes with some Bentonite clay. Reactions to this vary depending on timing and how I feel at the time. Can be awful at the wrong time or really helpful at the right - definitely help.

Pretty much no one in the world despite talking to many of the best know what to do for me. Still fighting to survive, am desperate and determined, but struggling to hold on. Systems are jammed and I need to work this out. Making a youtube vid soon to try to reach very smart people world wide.

Thanks all for reading, much love <3

~Chris.

http://cfsjourney.org
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