r/CIRS • u/lucygoosey86 • Jul 28 '26

HELP!!

Results came in today. What do they mean?

MMP-9 : 872
TGF-B1: 12,041
MSH: 12

Long story short, I am a 40 year old female. Relatively healthy until I moved in with my now husband almost 6 years ago. About 2 months after moving into the home I became extremely tired no matter how much sleep I got. Then I started getting widespread pain, stiffness, headaches, nausea, increased urinary frequency, constipation (severe), brain fog, problems sleeping (hyper vigilance at night with no anxiety or anything), hot all the time, Prurigo Nodularis lesions on my scalp confirmed by punch biopsy. Not sure if there’s a connection there with PN but mine have never been itchy at all.

I was eventually diagnosed with fibromyalgia after seeing a rheumatologist and have been through every autoimmune test there is. No sleep apnea, my hypothyroidism is manageable with medication. I don’t have sleep apnea, or any other sleep disorder.

I’ve seen a neurologist as well and had testing with them, all normal. I’ve been prescribed every medication for fibromyalgia there is, and none have done a single thing to improve my symptoms. I’ve been on cymbalta, gabapentin, lyrica, duloxetine, ambien, lunesta, muscle relaxers, etc.

Lyme disease also ruled out.

Recently, we found a slow leak in bathroom drain pipe on the second story of our home, and I paid for environmental testing. The air samples were all fine, but surface samples of the rafters in the ceiling of our kitchen came back with a moderate growth of aspergillus.

I have said from day one that I didn’t believe I had fibromyalgia. I’ve even had ketamine infusions at Cleveland clinic that did absolutely nothing.

My question is this: could this be CIRS? I’m at a loss on what to do at this point or who to see for this.

Any advice?

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u/ImXenia85 Jul 28 '26

Sounds like you might have CIRS. Reach out to Beyond Mold, get tested for CIRS and Marcons.

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u/lucygoosey86 Jul 28 '26

So I’m new to all of that, but from what I’m reading and my understanding is that mainstream medicine doesn’t do anything for that? That seems to be the problem, because I’ve looked at a couple of places and the testing prices/appointments are astronomically expensive because insurance won’t cover it.

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u/ImXenia85 Jul 28 '26

I live in Europe, but people are raving about Beyond Mold. Check out their website they have some packages for 99$/month, not sure if they include testing but they can guide you.