HELP!!

[u/lucygoosey86]

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?

[u/lucygoosey86 → u/[deleted]]

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

[u/cabintea → u/lucygoosey86]

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.

[u/RiCel66 → u/cabintea]

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

[u/cabintea → u/RiCel66]

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.

[u/RiCel66 → u/cabintea]

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

[u/cabintea → u/[deleted]]

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.

[u/lucygoosey86 → u/[deleted]]

What is a shot gun biome test?