@grapes I just wrote to the
www.survivingmold.com website (which is either run by Dr Ritchie Shoemaker, or is run on his behalf, I am not sure which), asking whether it is common for patients with CIRS symptoms to be misdiagnosed with ME/CFS. If this misdiagnosis is common, then perhaps we need to make this more known on this forum, so that CIRS patients misdiagnosed with ME/CFS can get the correct treatment.
Oh believe me, it is now so clear that CIRS is what I have instead of CFS/ME that I'm going to write my story as I get farther along in THIS recovery...which WILL occur.
And Shoemaker says it is common to be misdiagnosed. Read an example of a group of people he talked about.
And I'm appalled how we are forced to figure things out on our own to the degree we are. In spite of me being a very proactive person who digs and researches everything...it took being committed to coming here for weeks and weeks, posting in a lot of strings about my issues before someone like you came along and totally hit the nail on the head! Damn.
In just 24 hours since you first gave me a NAME to what I clearly have, I figured out WHY I crashed so badly last week (the sugar in cookies I ate which I had baked for company, raising insulin which pushed my systemic inflammation even higher) and supplements I needed to immediately get on to get the inflammation down. Because of those supplements, my deep, miserable debilitating fatigue, which was especially horrific yesterday, went away today. And I've also learned in the last 24 hours how to better use the Cholestyramine I have, working around the thyroid meds I'm on better, which I have to take three times a day.
The irony is that I already knew I still had mold in me--a physician I was working with long distance did the right tests last September. I saw the problem. But he never gave me the CIRS name, did NOT explain how aggressive I needed to be with those inflammation markers, never explained what supplements I needed to take to get those markers down, never explained some of the things I saw Shoemaker mention on his site (like the VIP spray), and was terrible about following through...so I gave up on him and was on my own and have been quite miserable with fatigue/compromised levels of energy...knowing I still had mold in me, but thinking it was the root cause of "CFS/ME"..so it needed to be the latter I explored. Nope....that acute mold inhalation I had a few years was root cause of me having CIRS and SO many related issues, including my mito being messed up to the core, as well as my methylation messed up, and high RT3.
This is the website I dug into last night, listing all the supplements I needed to start on immediately (or raise, like Curcumin, which I was on, but nowhere near enough):
http://www.herbaltransitions.com/TreatmentOfCIRS.html