Amy Proal at the IACFS/ME - summary

[Martin aka paused||M.E.]

Its how far the disease has progressed. How long you've had it etc

Given Whitney's strong reaction to drugs I don’t think that’s accurate

 

[Rufous McKinney]

It needs to be good TCM practioner,who also has a education/study in medicine

I swear by my chinese herbalist, has helped me greatly. Reduces the intensity of symptoms, feeling far less miserable as a result. I' ve never done a formal antiviral protocol....

Acupuncture is good for acute things (my back hurts), but for chronic conditions the herbs are the preferred treatment route.

Acupuncture stimulates the "channels" resulting often in a herx or detox effect in my case, and I have a low ability to tolerate needles. Its likely directly tied into the calcium ion channels. I do a very small number, for a short period of time, I usually get PEM after.

Finding the herbal expert is tricky. I would not use the term quack. most chinese colleges produce acupuncturiests. They don't produce as many herbalists. Its a very expensive inventory to maintain. Raw herbs, at least 600 of them, are on shelves all over the office. Another room is full of granular teas. If you go somewhere and they just hand you a bottle of supplements, thats not chinese medicine. My brother came out of the chinese medicine shop with no chinese medicine.

My custom formula is 38 herbs. My digestive formula is another four. I added lung moistening, when COVID struck. Nice addition.

Despite my practitioner being highly trained and skilled and he writes books, he is not an ME expert and we can get into some fun arguments at times. Oh, like the time he said spinal issues like stenosis, cannot cause ME. (another person who will never watch the Jen Brea film).

 

[Irat]

I swear by my chinese herbalist, has helped me greatly. Reduces the intensity of symptoms, feeling far less miserable as a result. I' ve never done a formal antiviral protocol....

Acupuncture is good for acute things (my back hurts), but for chronic conditions the herbs are the preferred treatment route.

Acupuncture stimulates the "channels" resulting often in a herx or detox effect in my case, and I have a low ability to tolerate needles. Its likely directly tied into the calcium ion channels. I do a very small number, for a short period of time, I usually get PEM after.

Finding the herbal expert is tricky. I would not use the term quack. most chinese colleges produce acupuncturiests. They don't produce as many herbalists. Its a very expensive inventory to maintain. Raw herbs, at least 600 of them, are on shelves all over the office. Another room is full of granular teas. If you go somewhere and they just hand you a bottle of supplements, thats not chinese medicine. My brother came out of the chinese medicine shop with no chinese medicine.

My custom formula is 38 herbs. My digestive formula is another four. I added lung moistening, when COVID struck. Nice addition.

Despite my practitioner being highly trained and skilled and he writes books, he is not an ME expert and we can get into some fun arguments at times. Oh, like the time he said spinal issues like stenosis, cannot cause ME. (another person who will never watch the Jen Brea film).

Thats great that you tolerate the herbs and have a chinese practioner you trust ,and that they help you,I agree that acupuncture can cause herx reaction,and I would not dare trying it in my situation now, (but it also depends which organs etc is treated during the session.), but back than I never had herx reactions and tolerated it but still had to go very slow,because every change in your system has to be integrated.

 

[Rufous McKinney]

Thats great that you tolerate the herbs

I've had a hard time with the lymphs cleanse. This is clearly my weak link, my version of ME is very lymphatic, probably very Eppstein Barr. And its the right side of my lymphatic system is far more sick, and exhibits far more breakdown of collagen. I can just walk thru it. Right eye, right foot, painful lymph nodes right, missing body parts, missing teeth. The missing appendix, the liver. All RIGHT SIDE issues.

So I"ve not been able to tolerate the "mild" lymph cleanse herbs. Take three times a day, I took 1/4 of the dose, once, not three times, and somehow I go into an ongoing state similar to Walking Dead (a show I have not watched, but since I did see Night of the Living Dead, I'll assume similarities).

So I swear Im going to try again somehow, to get to the other side of something detox and herxish. Want to get some binders to try.

 

[Irat]

I've had a hard time with the lymphs cleanse. This is clearly my weak link, my version of ME is very lymphatic, probably very Eppstein Barr. And its the right side of my lymphatic system is far more sick, and exhibits far more breakdown of collagen. I can just walk thru it. Right eye, right foot, painful lymph nodes right, missing body parts, missing teeth. The missing appendix, the liver. All RIGHT SIDE issues.

So I"ve not been able to tolerate the "mild" lymph cleanse herbs. Take three times a day, I took 1/4 of the dose, once, not three times, and somehow I go into an ongoing state similar to Walking Dead (a show I have not watched, but since I did see Night of the Living Dead, I'll assume similarities).

So I swear Im going to try again somehow, to get to the other side of something detox and herxish. Want to get some binders to try.

Interesting,it's also the right side for me.even hair loss on the right side and also the missing teeth,and intense rib pain etc yes for us beeing really sensitive we must go very slow or you just retoxify yourself . You could try some cats claw as a EBV antiviral,but very titrated of course

 

[Rufous McKinney]

You could try some cats claw as a EBV antiviral,but very titrated of course

thats actually in my chinese herb formula. Not been taking lately. On a sort of break.

 

[Oliver3]

Given Whitney's strong reaction to drugs I don’t think that’s accurate

I tend to disagree. I'm saying the initial posters improvement s with soups, supplement s , good chemichal hygiene wouldn't work on someone as Ill as Whitney. Once it's gone past a certain point, it seems you need something extremely precise or powerful to reverse the disease

 

[DrUniverse]

@Irat did you take Ciprofloxacin or annother Fluorchinol?

 

[Irat]

@Irat did you take Ciprofloxacin or annother Fluorchinol?

No amoxicillin.but the mechanism why it destroyed me,was because my brain was injured years ago from an SSRI.so I kindled with the antibiotic,which acted on my nervous system .kindling can happen with supplements,or simple pain killers too even years after protected withdrawal. Kindling is a change in the sensitivity of the brain to a stimulus.

 

[Violeta]

I've had a hard time with the lymphs cleanse. This is clearly my weak link, my version of ME is very lymphatic, probably very Eppstein Barr. And its the right side of my lymphatic system is far more sick, and exhibits far more breakdown of collagen. I can just walk thru it. Right eye, right foot, painful lymph nodes right, missing body parts, missing teeth. The missing appendix, the liver. All RIGHT SIDE issues.

So I"ve not been able to tolerate the "mild" lymph cleanse herbs. Take three times a day, I took 1/4 of the dose, once, not three times, and somehow I go into an ongoing state similar to Walking Dead (a show I have not watched, but since I did see Night of the Living Dead, I'll assume similarities).

So I swear Im going to try again somehow, to get to the other side of something detox and herxish. Want to get some binders to try.

Have you ever had middle to lower right side abdominal pain? I am wondering if right side lymphatics is affected more frequently due to lymphatic blockage in the intestines caused by ileocecal valve being stuck closed.

 

[Violeta]

No, that's right. I just thought it would be a good summary of a thesis that I sympathize with. And for me personally it provides hope that I can do something and I thought maybe the same would be true for someone else here who reads it.

That's new to me. I feel that's encouraging.

She used the very controversial Marshal Protocol.

 

[Martin aka paused||M.E.]

She used the very controversial Marshal Protocol.

And it cured her.