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Hi there, first, I know exactly how you are feeling. I am an otherwise healthy 32 y/o female. When I hit 30 (also the start of the pandemic) I started having 20+ new symptoms. I honestly thought I was dying. Doctors bounced me around to one another, I was told I have MS, checked for cancer, had endless MRIs and a spinal tap. They wouldn't figure out why I had nerve pain, swelling, brain fog and a persistently dropping wbc. After 2 years of searching, I started seeing a functional doctor who diagnosed me with CIRS. While COVID is can trigger this, the thought was after being in the house for so long, day after day during the pandemic, I developed mold illness which lowered my immune system and made me more prone to older and new infections. My lyme reactived, along with EBV, shingles, strep. All the things. I'm not sure where you are based, however Dr. Miles (Medicine With Heart) is a fantastic functional doctor who helps to get to the root cause of CIRS. I recently just started treatment. I'm still in the thick of it but have hope. If it is mold related, you can order a mycotoxin test (sadly not covered by insurance as CIRS is not*yet* recognized by western medicine, as I'm sure you're finding. Some people (roughly 20%) have an HLA-DR gene that makes is so their body is not able to tag and flush our biotoxins, such as mold, as well as others. Dr. Jess MD (you can find her on instagram) offers a ton of free information about CIRS and root causes. She has a platform ($49/month) where you can also order your own tests, such as the mycotoxin test if you're eager to find out and do not yet have a functional doctor. If you ever want to connect and speak further, I'm very open. CIRS is a debilitating and lonely condition. I've had to be my own doctor for so long, but there is hope. We are the sensitive canaries of this world. Sending strength and light <3

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Replies to "Hi there, first, I know exactly how you are feeling. I am an otherwise healthy 32..."

Your experience sounds almost identical to my own, without the helpful doctor at the end.

I went from someone who was physically strong, no stamina issues, at 30; to not being able to feel anything at skin, or muscle level, just the feeling of my bones being on fire, and complete immobility by 32.

Plus severe consistent insomnia, relatively regular TIA like episodes (still not sure if they were, but the only thing that fit the symptoms), and exacerbation of my anxiety issues, and depression.

My old GP diagnosed it as psychosomatic, and wouldn't deviate, so included it in his referral to a pain management doctor. Therefore shutting down any possibility of getting an actual diagnosis.

I've had two MRIs over the period, but without any contrast medium.
So both were "unremarkable" and that's as far as it went.

Wondering if you used any prescription drugs for treating the mold illness. Wondering if steroids like Prednisone could be used short term for this. My daughter is weaker every day and no one knows what to do, all sorts of specialists. Thanks for explaining that CIRS is s real thing.

Hey, any update on how it is going? Just discovered this illness and think it might be the cause of a lot of trouble for me as well, but also looking for affordable diagnosis and treatment options. I've already done the $15 vision test but that's it..

I would like to talk in person. 80 years and slow to text.