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

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joegrane Views: 6,555
Published: 9 years ago
This is a reply to # 2,079,109

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

== Hello Chris, I remember your previous reports here and in Yahoo's FDC group. Thanks for the update. I'm sorry to hear about your ongoing difficulties.

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).

== If mercury is involved, you'll want to include selenium, not just for thyroid support, but because of its role in defending the body from heavy metals. It might produce more energy in an HM toxic person than iodine.

I've continued the Vit C but now down to 10-12 grams or so. Not much diff with more.

== The body struggles to absorb such doses; however it helps with the constipation. Have you considered making your own lipsomal vitamin C for better absorption--more on that if requested.

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.

== Sam-e is tricky. HM toxic folks often need methylation support but it seems to be difficult to keep levels stable. Taking too much at one time could cause DEVASTATING suicidal depression. (My understanding is that methylation is involved in the breakdown of norepinephrine and serotonin.)

It seems to be safer and less expensive to take sublingual or IV methyl B12 and folate which are involved in production of SAM-e, however some get agitated and amped up on more than a little methyl B12. Methylation support is tricky.

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.

== It is hard to imagine you'd tolerate more than a few mg of oral DMPS every 6 or so hours.

== Please consider selenium.
== Do you tolerate Vitamin E?

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

== Many Hg toxic folks are.

== Do you tolerate any glutamine?

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).

== Are you copper toxic as well due to the poor bile flow?


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.

== A little milk thistle useful?

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.

== maybe a need for sulfate--more on this if requested. Be careful with phenols too.

== tolerate any molybenum?

== Epsom Salt is magnesium sulfate.

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.

== Yes, Mg and sulfate are usually helpful to Hg toxic folks but some like the foot baths more than full bath.

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.

== I hope you are getting enough fluids--with electrolytes, even if you urinate frequently. Please consider selenium.

== Best regards,

== Joe

Thanks all for reading, much love <3


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