Research Group for ME/CFS, Chronic Disease, Ageing and Cancer

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Starting Out and A Few questions
« on: December 24, 2021, 03:49:26 PM »
Hi,

I have had ME/CFS at different levels over the last 25 years.  I currently went from my best health in 10 years (functional but still quite limited with PEM) to close to my worst (housebound to bedridden).  I am trying to digest all of this material with the limited energy I have.  Along the way, I have various questions that I will post here.   My main concern right now is trying to start the protocol from such a weakened state at the same time, I don't want to spend 8 years again to get back to 60-70% functional.  

First question, I have seen reference to feeding tube scenarios in several places and wondering if that is metaphoric or am I missing something?

2) I just got back results from 35 tubes of blood and besides might having various HV infections (CMV, EBV, HSV1, and coxsackie - I always have a hard time at understanding the results) as well as some markers that indicate WDB (Water Damaged Building/ Biotoxin illness) exposure low such as low VEGF and leptin and high MMP9.  So, I am also looking at the Shoemaker mold protocol which recommends a no Amylose diet along with high dose fish oil to help improve those issues but that follows some other steps.  This protocol seems to stress eating Amylose foods (oat bran for example).   Have you had any experience with these markers and do you have any recommendations?

3) I noticed that Coxsackie might be an issue and wondered if you have looked at Equilibrant ?

More questions will follow as energy and reading and time permit.  

Thanks for the feedback.



Re: Starting Out and A Few questions
« Reply #1 on: December 24, 2021, 04:00:49 PM »
Another question I forgot to ask.

Can high dose vitamin C or Magneisum sulfate be substituted for Magnesium Oxide?


Re: Starting Out and A Few questions
« Reply #2 on: December 29, 2021, 03:57:34 PM »
Also, where has everyone gone.   It seems this stopped being used in July.


Re: Starting Out and A Few questions
« Reply #3 on: April 25, 2022, 08:25:47 PM »
Also, where has everyone gone.  It seems this stopped being used in July.
The discord server has the daily chatter. I was also largely offline for 6 months with 2 studies. New paper incoming. 
NB. I am NOT a doctor and all information provided is for educational purposes only.

Please consult your physician before attempting anything you read here.