• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

gregh286

Senior Member
Messages
978
Location
Londonderry, Northern Ireland.
i just use a standard whey protein from bodybuilder ship, vanilla, or choc its nice/
I also made massive changes to diet.
makers only diet, nothing from factory, no additive.
I come into CFS with toxic food, alcohol and smoking not infection/virus.
I become acidic very quickly and then get metabolic shut.
I have to keep a very akaline diet to keep me akaline and high funtional
 

Hope_eternal

Senior Member
Messages
293
i just use a standard whey protein from bodybuilder ship, vanilla, or choc its nice/
I also made massive changes to diet.
makers only diet, nothing from factory, no additive.
I come into CFS with toxic food, alcohol and smoking not infection/virus.
I become acidic very quickly and then get metabolic shut.
I have to keep a very akaline diet to keep me akaline and high funtional
Thank you. This is very helpful. I appreciate you sharing your experience.
 

Mary

Moderator Resource
Messages
17,473
Location
Southern California
@Hope_eternal - I've had good results with branched chain amino acids (leucine, isoleucine and valine). They've helped my energy some and also shortened the duration of my PEM crashes, from 2 - 3 days down to 1. Several people here on PR have been helped by them.

I was alerted to BCAAs when Nutreval testing showed that my leucine was low, which is supposed to be unusual. And then I found several articles which talked about BCAAs and how they might help with ME/CFS fatigue. I take 4000 - 5000 mg a day. This is a good product and this also. I've found that the cheapest ones generally are not very effective (like everything!) I take 8 capsules a day, 4 first thing on an empty stomach and 4 late morning or early afternoon, also on an empty stomach.

This thread talks about BCAAs and PEM: https://forums.phoenixrising.me/threads/bcaas-reducing-pem.34719/

I'm not suggesting you take BCAAs in place of whey protein. However, whey protein by itself never gave me the benefits of the BCAAs.

Also, you may have looked this up already, but I looked up The Maker's Diet after @gregh286 mentioned it above, and found that the book was written by a young man who had serious Crohn's and he says this diet cured that. I have no experience with the diet, just wanted to pass on this information if you weren't aware of it.
 

Hope_eternal

Senior Member
Messages
293
I've had good results with branched chain amino acids (leucine, isoleucine and valine). They've helped my energy some and also shortened the duration of my PEM crashes, from 2 - 3 days down to 1. Several people here on PR have been helped by them.

I was alerted to BCAAs when Nutreval testing showed that my leucine was low, which is supposed to be unusual. And then I found several articles which talked about BCAAs and how they might help with ME/CFS fatigue. I take 4000 - 5000 mg a day. This is a good product and this also. I've found that the cheapest ones generally are not very effective (like everything!) I take 8 capsules a day, 4 first thing on an empty stomach and 4 late morning or early afternoon, also on an empty stomach.
This is very helpful information. Thank you Mary! My son has an appointment to go over a bunch of testing next Wednesday and I will bring this information to his doctor’s attention. Thank you for the links too. I’m organizing a bunch of questions for our appointment full of all the ideas and suggestions I’ve gotten here. I have tried a couple already. One being Lactoferrin but I think we need to try it again because I gave it to him the day after he got his Stelara injection and he was not doing well that week. Was not a good day to give it to him. I’ve been too afraid to try anything new on him since his crash from the overnight doctor appointment.
Also, you may have looked this up already, but I looked up The Maker's Diet after @gregh286 mentioned it above, and found that the book was written by a young man who had serious Crohn's and he says this diet cured that.
I actually heard about this diet over 20 years ago and have considered reaching out to the author. I follow Dr. Axe and he has written books with Jordan Rubin as well as had talks with him. He mainly attributes his healing to soil based probiotics and changing his eating habits which is amazing.

Thank you so much for your message! I truly appreciate it.