A Chronic Fatigue Syndrome/POTS Patient Responds to a Multiple Sclerosis Drug - What Does It Mean?

[JWest]

Rachel, you sound like a textbook case case of mold induced illness - the blood sugar issues, light sensitivity, tingling, burning, tinnitus, twitchy eyes and crushing fatigue. I know it's a popular diagnosis these days just like Lyme and some others but in your case your symptoms strike me as similar to some of my own and others I've read about so I don't suggest it offhandedly. The mold does not have to visible and the house does not have to old for there to be problems. Are you in the Bay Area? A lot of people suffering from the "mold triggered ME/CFS" subset of this illness became ill here in the Bay Area, especially Berkeley are the South Bay, including myself and Julie Rehmeyer (link to her story on this site below). I recommend checking out the Paradigm Change website at http://paradigmchange.me/ and also reading Julie's story here on Cort's site if you have not already at: http://www.healthrising.org/forums/...-rehmeyers-mold-avoidance-recovery-story.261/

 

[Jenny Horner]

Has anyone suggested a study of Copaxone and other immunomodulatory drugs (Abatacept (Orencia), Adalimumab (Humira),Infliximab (Remicade), Etanercept (Enbrel), IVIG, methotrexate, azathioprine, 6-mercaptopurine, cyclosporine, and tacrolimus) to the NIH? I've already sent my ideas but this looks worth a suggestion.
@Cort have you already done this? If not anyone can suggest this or other ideas but the deadline is 24th June 2016.
Instructions and my email to the NIH are here : https://tipsforme.wordpress.com/2016/06/15/nih/

 

[Aidan Walsh]

Allergic reaction to the drug possibly the medicine contains Alpha Gal components I wonder if she is another Positive to the Alpha-Gal Meat Allergy? Alpha-Gal Meat Allergy can be in ME CF S Fibro GWI even EDS combined I have seen

countless positives...I heard also Ron Davis had an antibiotic that works but never said what it was either & if East African Sleeping Sickness is the underlying cause then why is he not making this Public he mentioned it 15 months ago

in London Conference. I know countless told they have MECFS with MS they are all the same Box of illness & one Woman in the UK was told MS for years she had Lyme disease all along & is Cured now with antibiotics & proper labs

testing in Europe, not the UK

 

[Aidan Walsh]

One of the things I found really interesting in Rachel's story were her blood sugar and orthostatic issues - both of which I have to a much milder degree. Her endocrinologist said POTS was common in her reactive hypoglycemia patients. Why would that be so? I have never heard of a connection being drawn between the two before.

Numerous are diagnosed with an insulinoma & a good reason for Hypoglycemia attacks, also Eagle Syndrome can play roles in drops in sugar & also Syncope POTS Tachycardia as well especially the Vascular Type I do not think her improvement was dramatic at all either, she did not Recover at all