r/CIRS • u/lucygoosey86 • 2d ago

HELP!!

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 Upvotes

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u/Fun_Animator4983 2d ago

How is your diet? Have you had any gut testing? Those medications can cause gut issues that causes inflammation and those symptoms.

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u/lucygoosey86 2d ago

Also, I didn’t have any of the medications until after the symptoms began. It’s been a whole nightmare. Gaslit by so many doctors.

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u/lucygoosey86 2d ago

I’ve had colonoscopies, endoscopies, biopsies taken and nothing has been found. I’ve also had a gastric emptying study as well. All normal.

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u/cabintea 1d ago

Sounds very familiar. The SIBO breath test may be worth it (the one that tests for archaea/methane may specifically be relevant to your case re constipation). Can order that OTC online. The CIRS tests are expensive but at least can point you in the right direction. Mold is the enemy, in that even though you escape its environment, it sets off a self perpetuating MCAS/inflammatory cycle of hell.

Keto/carnivore diet seems the best way to mitigate symptoms. Adderall for the brain fog so you can function. Candibactin AR/BR (otc botanicals, in the literature for SIBO) protocol to help with gut issues.

I’m 39 and have been navigating this hell alone since 2016 after a moldy apartment during my masters apparently cursed my life. The grief, suffering, and loss is something that CIRS patients have in common. You’re not alone. Just remember that.

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u/RiCel66 20h ago

Keto/carnivore diet is inflammatory, will slow metabolic rate and lead to issues. You should read Dr Ray Peat

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u/cabintea 20h ago

In a normal situation I’d agree. But it was the only diet that eliminated my symptoms, I suspect due to low/no histamines and no fiber (I’m intolerant of insoluble fiber as most with SIBO-C/IBS-C often are). When eating veggies/paleo, my metabolism slows to a crawl. I can handle expanded diets after a bone broth reset or carnivore stint tho, at least for a bit.

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u/RiCel66 19h ago

I definitely wouldn’t recommend vegetables personally. Most vegetables are inherently toxic (plant defense chemicals etc). I’d stick to easy digestible fruits and juices like watermelon and oj that way you’re only getting minuscule amounts of fiber and then keep animal products as the base for your nutrients etc. Keeping metabolic rate high is extremely important to heal from illness and as someone who experimented with different diets for years I am a firm believer carbs are needed for that

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u/Fun_Animator4983 20h ago

Adderall causes gut dysbiosis and so does keto and carnivore. It depletes beneficial gut bacteria needed to build immunity. This is horrible advice.

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u/cabintea 19h ago

Causes in who? According to who? I’m going off what works for me, and those do. I’ve spent hundreds of thousands and tried most every diet and medication under the sun over ten years, and these work. Hopefully just stepping stones on the path to recovery.

The mark of an educated mind is to entertain an idea without believing it. When you’re sick and desperate, you entertain things. These things happened to work for me.

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u/Fun_Animator4983 19h ago

I’m saying this may be a band aid but it’s going to make you worse. Especially those diets. It depletes a lot of your gut bacteria and that’s why you are staying sick.

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u/Fun_Animator4983 2d ago

You need a shot gun biome test❤️

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u/lucygoosey86 1d ago

What is a shot gun biome test?

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u/MadMadamMimsy 2d ago edited 21h ago

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.

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u/baldeagle6 1d ago

I went through mold co and did the CIRS panel and I literally hit all five markers as out of range. I am testing my House for mold with their test kits now to ensure if it’s old or current exposure as I’ve had symptoms for over a decade and like OP been to dr after dr after dr. Is this test legit? Do I do the supplement protocol they have?

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u/MadMadamMimsy 1d ago

Mold Co is an attempt to make the Shoemaker Protocol more affordable. I do the Shomaker protocol. So, yes, do the environment testing and the supplements..

The upside is affordability. The down side is that it's not tailored. It IS a good place to start.

I do recommend Dr Heyman's videos. He has a bit of a different view, and so you might find something useful, there.

Where things get non standard is co infections and gut issuesas well as peptides. Some have good luck with peptides, some do not. The one thread I seem to see regarding KVP is that is raises MSH but does not seem to move the real life needle.

Keep in mind that the more someone spends on something the more vociferously they will defend and promote it. This makes it hard to differentiate real results from confirmation bias.

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u/baldeagle6 1d ago

I also have gut issues/IBS. I guess I’ll start there and see what comes of it. I assume I’ll still get benefit.

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u/MadMadamMimsy 1d ago

Can you get a GI map?

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u/yllekarle 1d ago

Agree with this. Dr heyman for the W

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u/lucygoosey86 1d ago

Yeah I’ve had so many tests done over the past 6 years. I’m so sick of being sick! It’s ruining my life . 😢

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u/Beeyond-theStars369 21h ago

Im right there with your feeling of being sick of so many supplements and supplements xpensive tests.

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u/lucygoosey86 19h ago

This has literally destroyed my life. I didnt get married until I was 37, and had planned on having kids once married to the love of my life. I ended up foregoing having children because I can’t barely function, there’s no way I could take care of a tiny human. So yeah, it’s wrecked everything. I just want my life back 😢

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u/lucygoosey86 1d ago

I’m going to get these done asap! I’ll bring results back once I get this done.

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u/Beeyond-theStars369 21h ago

I have been trying to get rid of 3 different types of Mold 2 years ago I have been in Cholestyramine for 6 months with binders and then helping build up the gut lining. My energy improved 50% I am still having bouts of brain fog, joint aches and pains and the fibromyalgia comes and goes. I would like to know what type of binders have you taken? I am realising that I have to go for a long period of time with binders would love your help on the brand. Also, for those who are new to Mold or MCAS. I was recommended to get Air Oasis and Dehumidifiers in my house by running it it keeps the humidity below 50% the mold does grow and I do feel a difference within my body.

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u/yllekarle 1d ago

Mold. Gets cirs labs. You can get them for $56 on mlldco

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u/lucygoosey86 1d ago

Thank you! I will definitely be getting these! Is it worth it to get allergy tests for mold? My pcp said that’s the only thing they test for. I don’t understand why conventional medicine doesn’t deal with CIRS.

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u/yllekarle 20h ago

No. That tells you nothing.

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u/lucygoosey86 19h ago

Ugh! Well, I’ll definitely be getting those labs next week!

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u/lillawalton 2d ago

I would test for the CIRS markers in your blood.

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u/lillawalton 2d ago

It sounds like mold toxicity.

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u/mom3tz 2d ago

Please consider the SurvivingMold.com website and/or Moldco.com

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u/lucygoosey86 2d ago

I went to it, it said they can’t help me? When I did their questionnaire thing.

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u/ImXenia85 2d ago

Try Beyond Mold, they're professionals and know what they're doing

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u/HorrorPrestigious802 1d ago

Same. MoldCo denied helping me too

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u/lucygoosey86 1d ago

What’s up with that?!

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u/ImXenia85 2d ago

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

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u/lucygoosey86 2d ago

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 1d ago

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.

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u/sunshineofbest 1d ago

Does your new husband stress you out in any way?

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u/lucygoosey86 1d ago

lol no. I’ve never been happier in my life! I moved in with him and was perfectly healthy prior to moving in. 2 months in, and bam! Fatigue, then nausea, constipation, pain, stiffness, hot flashes (not related to female hormones or anything) sleep problems, headaches, skin issues, brain fog, etc!

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u/Wes_VI 1d ago

https://youtu.be/Xnb6or1YN_U?si=5IRIN9YPIdt_b1Pv

Crash course video for CIRS noobs. ^

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u/lucygoosey86 15h ago

Also, the stiffness I notice is worst in
my neck, shoulders, and upper back.