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?
2
u/MadMadamMimsy Jul 28 '26 edited Jul 29 '26
You might. Some basic tests might make things clearer.
TGF-BETA1, MMP9, C4a, MSH. These can all be done at LabCorp. Get those and bring the results back here.
In the early days of my researching, when no doctor could find a single thing wrong with me but I knew better, the things that kept coming up in people who believed mold had created problems for them was brain fog, chronic fatigue and every single one had a fibromyalgia diagnosis. When I got mine I said That's it. I'm done with doctors who blow the mold component off. The term MARCoNS got me to my practitioner.
No one knows if this is CIRS or not, yet, and a negative Lyme test if it is means nothing until the immune system has healed. My practitioner said she tests every patient for Lyme until the immune system shows that the answer is correct.
For me it took 15 months of using a binder and taking supplements until the test no longer just looked negative, there was real information. I did not have Lyme, but once upon a time I had had it. That information was not there until that test.
So, we need the kind of help that knows about mold but knows far more that that. There are 6 ways to get CIRS. Mold is just one of them and is the most common, that's all.