Any CIRS people here?

WalkingbyFaith knows a lot about this.

I think some people also use VIP nasal spray as part of their treatment, you might want to look into that if you haven't already.

Hi BlazerGermany !,

Yes it can be expensive.

I'm not too familiar with the treatments, but I think Nystatin nasal spray should be another option.

Although, I'm not sure if they are both used as part of a treatment plan.

Nystatin, from what I've read in the candida community, should be over the counter in your country (if it's the one in your username 🙂). Many people worldwide buy it from Germany because of not needing a script that way! Or so I've heard.

I have CIRS as well, Aerose. What would you like to discuss?

saraeli said...
I have CIRS as well, Aerose. What would you like to discuss?

Hi Sara elica, nice to see you again.

Are you doing a straight up Shoemaker protocol? I have failed with the PK protocol in the past so now just started Welchol and just had a positive MARCONS test. So, I'm at the beginning stages. I'm firstly wondering if you have seen any improvement as you moved through the protocol and am also wondering about some home remediation questions.

No, I was not treated with the Shoemaker protocol, although I incorporated pieces of it. By the time I was diagnosed with CIRS (in 2017?) most doctors seemed to be moving away from the Shoemaker protocol.

My CIRS panel of tests was quite abnormal when I became ill and for a long time after, so I was diagnosed with CIRS right along with tick-borne disease by my LLMD. Some of the tests can be abnormal from causes other than mold, such as infections, which I knew I also had. I treated for tick-borne disease first, partly because I have never scored below 100% on the VCS test. Three years into my illness, I become bedridden following a virus, and pulled myself out of that condition using advice from the book Toxic by Neil Nathan, which draws somewhat on Shoemaker's work as well as those who came after him in the biotoxin illness milieu, including Robert Naviaux. (I'm pretty sure you and I have communicated before about DNRS and Nathan's work, if I'm not mistaken?)

I moved to a different house, had it remediated for mold, and got rid of or decontaminated all of my belongings. This was a massive undertaking, obviously. I learned a great deal in the process, especially from my awesome mold inspector. He and I worked together closely for months as I had him inspect and test multiple houses we were considering purchasing, and then remediated the house we bought with his guidance. If you are in the Northeast, I'd be happy to share his contact information, and of course I'm happy to answer any questions I can as you move through the process!

That said, I had been feeling better even before I addressed the mold in my environment, honestly. I had an air purifier in my bedroom and a new mattress, but was still living in a house that was a major ERMI failure. What helped me was addressing MCAS, including DNRS.

The components of the Shoemaker protocol that I did do were removing myself from exposure, xylitol nasal spray, ensuring daily bowel movements, occasional binders (mainly bentonite clay and chlorella), and keeping detoxification pathways clear (glutathione, milk thistle, cilantro, etc.).

Thanks for your input, loski and saraeli. Your takes are really interesting. I feel like a Shoemaker CIRS protocol is the only thing I haven't done yet, at this point. Started on the PK protocol, failed with that, tested positive for Bartonella and Babesia, treated with Dr Mozayeni, Dr J, and two other LLMD's and had no improvement. Then spent years on Buhner's protocols similarly with no improvement but had some die-off, anyway.

For the past several years I have really believed this is autoimmune in my brain (my brain is horribly effected) and thought mold is the only thing left. I also validate the AI theory because if I'm not treating my gut, I completely tank. It doesn't get me all the way back, though.
I am still failing the VCS tests and had an IGL test in Germany show very high levels of Fusarium mold. That has been where my focus has gone since then, at least. If it's not that, I don't know what else it could be! Something has to be driving the AI process.
I've started picking up my old habits again that I fell off of- militant on my gut, coffee enemas, red light, going after gut infections.... which is essential to hold me together at the seams but isn't the whole picture. Reading Shoemaker's protocol it seems so hopeful......

“IGL test in Germany show very high levels of Fusarium mold”

I’ve never heard of this test. How was the test done, and what was it testing?

Doesn’t sound like a mycotoxin test, as Fusarium is a mold not a mycotoxin. It produces zearalenone mycotoxin.

Just before moving out of my relative’s house and into my car the first time, I did a Great Plains Mycotox test. I had high levels of gliotoxin, zearalenone, and I think slightly elevated ochratoxin. I had never heard of zearalenone, and Fusarium was not included on the ERMI test.

I did some internet digging and found a study had been done somewhere where they tested the kitchen sink drains of around 86 houses. Over 60 of them had Fusarium. Shortly after I had the mycotoxin test done, my relative discovered a leak. Guess where? Under the kitchen sink.
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CORRECTION 8/12/23:

I decided to try to find the reference to the study I had come across regarding Fusarium. I found what I think was it, and, boy, was my memory scrambled!!🙃. about the only part I remembered right was Fusarium, sink drains, and something about numbers in the 60’s and 80’s.
Here’s the article: https://phys.org/news/2011-12-disease-causing-strains-fusarium-prevalent-plumbing.html

Post Edited (WalkingbyFaith) : 8/12/2023 6:48:48 AM (GMT-8)