Amy Proal at the IACFS/ME - summary

[Oliver3]

@Martin aka paused||M.E. ,I also had the collagen and muscle loss,I was down to 44 kg.....and looked like a dying cancer patient,but all came back again

That's good to know

 

[Irat]

Ah...I've tried all that n more my friend. Thanks for taking the time to reply.
I think there's a fault deeper than what we realise. Ron Davies has eds and had a viral infection of the heart as a kid. His son is sick.
Same thing with my mum, the heart infection and I'm sick.
There's some connection I'm sure between connective tissue and the ease with which viruses can hideaway me
. Healthy people don't react like we do to antibiotics. There's something deeper that allows the virus a foothold, or allows mould etc

yes I thought about testing for EDS. (But I could take antibiotics and other medication before I got sick without any issues) The underlyning issue could be for everyone something else I guess.could be genes or I don t know. Mabey it's only kindling when the bucket is full.....and yes there are ppl who don t heal from illnesses and even die.its sad but all we can do is keep trying.

 

[Irat]

Never give up !

 

[Rufous McKinney]

the few trials I had with detox made me sicker.

This is the spot I seem to get jammed up in. Unable to get to the other side of some detox or herxing result, I give up.

This stuff puts me into a complete STUPOR and nearly blind. (my eye inflammation is very severe).

 

[Martin aka paused||M.E.]

This is the spot I seem to get jammed up in. Unable to get to the other side of some detox or herxing result, I give up.

This stuff puts me into a complete STUPOR and nearly blind. (my eye inflammation is very severe).

I don't know what's wrong. I take bentonite now and notice absolutely nothing.

 

[Irat]

I don't know what's wrong. I take bentonite now and notice absolutely nothing.

You belong to the group who can take everything lol,and others nothing.just shows how different we are.one sip of something destroys me .no matter what the substance is .but I do know ppl like you,severely sick but can throw everything on them .i don t have any explanation for this.mabey depends which parts of the brain /pathways are affected,or the liver,or unregulated genes. I don t know

 

[Martin aka paused||M.E.]

@Irat it could also mean that my treatments don't work?!

 

[Irat]

@Irat it could also mean that my treatments don't work?!

Excactly...its all so tricky .

 

[Martin aka paused||M.E.]

Excactly

Wonderful

 

[Irat]

Wonderful

Lol...no seriously I don t know why are you "treatment resistance" and not responding....you should find out

 

[Viala]

@Irat it could also mean that my treatments don't work?!

I think it's good that you are not too sensitive, you seem to have stronger body. Some treatments take time and some just don't work.

 

[Irat]

@Martin aka paused||M.E. ,one more thought from me,i know that Natural treatments often get dismissed and smiled at,but One should not underestimate their power and effectiveness.things like Chinese Medicine,TCM,Akupunktur
provides extensive natural resources for medicinal compounds, and these resources are generally regarded as effective plus it targets the whole system and might could give you a kick start and puts the body in a healing state and redirect.but one need a really good practitioner,who knows what he is doing,there are many quacks out there.I had someone back than who came into my house. I could not do it now though.too intense.
https://pubmed.ncbi.nlm.nih.gov/25159303/ antiviral treatments in Chinese medicine
https://pubmed.ncbi.nlm.nih.gov/25146086/ study Chinese medicine and CFS

 

[Viala]

Anyway.....what I tried over the years was akkupunkture,homöophaty,hypnotherapy first ..with this i was able zu function more and could start to cook,First many soups i could put in the freezer.i went fully plant based with tons of herbs and teas for my specific symptoms i researched ,later focused on healing my gut and went more meat based,bone broth and ate liver.Supplements I only took zink,Vit C and chromium piccolinate for my blood sugar problems.

Most important for me was going fully off the internet ,no smartphone at one point and started a very strict routine ,but of course still collapsed many hours in bed .but I got better and better,started reading books I like,knitting for hours ,painting and going with a friend every morning into the forest .I also did lots of sun exposure .

Thank you for sharing your remission story Irat. Anything that helps!

Do you remember which acupuncture points were stimulated and which homeopathic remedium you took? I did acupuncture as well at some point for other issues and it definitely did something.

 

[Irat]

Thank you for sharing your remission story Irat. Anything that helps!

Do you remember which acupuncture points were stimulated and which homeopathic remedium you took? I did acupuncture as well at some point for other issues and it definitely did something.

No I don t know which accupuncture points.viala,it's 15 years ago,...the practioner does a ammanese and read your eyes,pulse and tongue too so its very individual ,as everyone is different with homoephaty i also had a practioniner and have done a constitutional Therapy it's called,which can t be done alone.you get every 3 months a high potent globules and it is supposed to peel you like a onion (we say in german) like layer after layer. But acupuncture helped me most at first

https://pubmed.ncbi.nlm.nih.gov/25146086/

 

[Viala]

No I don t know which accupuncture points.viala,it's 15 years ago,...the practioner does a ammanese and read your eyes too so its very individual ,as everyone is different with homoephaty i also had a practioniner and have done a constitutional Therapy it's called,which can t be done alone.you get every 3 months a high potent globules and it is supposed to peel you like a onion (we say in german) like layer after layer. But acupuncture helped me most at first

https://pubmed.ncbi.nlm.nih.gov/25146086/

You're right it is different for everyone and these techniques are mostly personalized, but who knows, there may be some similarities in CFS group. I think I know what you mean by constitutional therapy.

I remember my first acupuncture and it was amazing, I was very, very calm afterwards, even too calm I can say It is self experimentation for me now.

 

[Martin aka paused||M.E.]

I remember my first acupuncture and it was amazing, I was very, very calm afterwards, even too calm I can say

Raelan told me to improve my lymphatic flow so that might be sth that contributed

 

[Irat]

It needs to be good TCM practioner,who also has a education/study in medicine and able to do a professional diagnostic and knows what he is doing not an naturopath who went to school for one year.and knows nothing about ME...like I said many quacks out there who can do more harm than good in this field.

 

[Martin aka paused||M.E.]

said many quacks out there

That's indeed a big issue

 

[Irat]

That's indeed a big issue

Definitely plus all the money we lose..we should keep in mind that every practitioner we work with is our employee.and they like to forget about this lol....

So first visiting websites,interviewing them and when I feel I can trust someone that's half of the rent and a good start.but many are really horrible and ego ridden,without any empathy and on top of this without any knowledge.

 

[Oliver3]

Lol...no seriously I don t know why are you "treatment resistance" and not responding....you should find out

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