My CIRS Journey - Chronic Inflammatory Response Syndrome

I was recently diagnosed with CIRS. I have the "dreaded genes" and low MSH haplotypes. I thought I had MS for a long time until I realized every time I had the MS symptoms flare up it was after mold exposure. The worst one was after a leaky pipe caused me to breathe in a lot of mold while I was fixing it (before I knew how bad mold was). The doctors mostly treated me like I was a moron. Finally it's great to know what it was. I am still working on remediation and binding and all that...hopefully these symptoms calm down soon. I lost my only child right before this thing flared up bad, and I always wish I had known about this before his passing because I don't know if mold/CIRS contributed to his issues. It's all so painful, mold may have taken away my child and much of my life. I may heal physically, but it's already taken my heart.

I’ve been seriously sick for 32 months now, and in solitude since the start of the pandemic, so just over 3 years now. I recently discovered CIRS after a nearly exhaustive search (and $80k+ in medical expenses), and have all or nearly all of the blood tests that relate to it, as well as nearly every symptom it lists. If you ever want to share wins, joy, camaraderie or treatments that are helping you, I’d be happy to connect and pool our knowledge. I do about 50 things per day to live in a state of joy and gratitude, though am physically quite unwell, and have several new treatments and things I’m trying or about to try. If I can be of service, it would be my pleasure, and if I could learn something from others who have recovered or are recovering from CIRS, I would be so grateful, as well. Thank you for posting this. Sending deep peace, radiant health and wellness, ENERGY, and love. ♥️🙏🏻

Doing the carnivore diet helped a lot, but I'm still debilitated, most of the time bedridden. Magnesium (600-1000mg) gave me a nice headspace, reduced irritability a lot, helps cognition too. Something that helped me A LOT, felt me feel like new, was Kambo, the frog poison. I was as close as new and healthy as I can be, it lasted for 4 hours more or less. So I guessing it's related to bile excretion, as Kambo makes you vomit so much you vomit your bile. There's more action mechanisms to this, but seeing that Cholestyramine works, it's a good guess I think! Anyways, been sick 2016, used to work as a magician in parties now I'm in my bed, horay. All we can do is hope! Feel like I need more people going through this, I feel so alone, no one believes it's real just because it doesn't come out in the blood exam or ultrassound, is terrible, people assume you're pretending or is in your head, it's terrible, I can't open up to no one.... Thanks for reading.

Hiya! I just got diagnosed with CIRS after 6 years of being absolutely wrecked. Just completely bedridden. Thanks for sharing! Glad I found you.

I have suffered for weeks after huge amounts of mold exposure! 6 ER visits because of intense symptoms that were alarming. Told me I had Anxiety Disorder and needed meds. 🙄 Was CIRS the entire time. FINALLY THE TRUTH! I was INSTANTLY cured of Anxiety amd Depression, now working on the treatment. These medical professionals are not very professional. The best one was a student who was curious about WHY I was having symptoms.

Bless your heart for sharing all of this, Olivia!!!

You have such a beautiful smile. 😊 I believe I had CIRS because I previously had lyme disease. I'm just learning about CIRS. Thanks for sharing your story!

Thank you for your story. My family, including my seven year old daughter, are trying to heal from CIRS. We had seven years of mold exposure and it's caused so many symptoms. I trust that God will help me to help my family heal. ❤️

I have CIRS and the hardest thing for me (other than feeling sick) is all the lifestyle changes: no gluten, no dairy, not going home anymore because that had toxins in it, it's a hard journey.

Prayers for you Olivia 🙏🏻🙏🏻🙏🏻

Wow I’m so on your boat thanks for sharing ♥️♥️

Thank you for sharing it means alot to people like me who are trying to find answers. What symptoms do you experience and neurological symptoms of numbness? What does your treatment plan consist of? Thank you!!

Hi Olivia, how is your journey been healing from CIRS and working with Dr Heyman? I'm looking into it, it really seems like a gamechanger! You might consider an update video whenever it feels right, looking forward to it :-) take care!

Yes! The anxiety and depression stink. You are not alone, either! hugs!

CIRS here too. Took me years to figure it out

Thank you for sharing your experience. I was curious about it because I saw a video of a girl who said she has CIRS and get sick when she is around covid vaccinated people. I am wondering if other people with CIRS has experienced this as well. Thank you!

I’ve been dealing with this for 5 yrs from mold and now Iam understanding what’s going on with my body to be able to get help from my dr mold made me extremely ill and almost killed me 6 times I don’t even know where to begin I no longer live in the home and it’s been a yr and a half and iam still suffering 😢 also my new apartment had leaks as well previously now I’m highly sensitive to mold 😭

Did you happen to do the genie test from ProgeneDX? If so was it worth doing?

Olivia, I am in the process of getting diagnosed with CIRS. I had been remediating moldy buildings for years and started to get very ill in 2019. I have been where you are at and have seen so many doctors with no results. I have been treated for LYME with no results. Have you taken the ACS test? This is one of the indicators that you have the mold issues.I have had COVID twice as well as pneumonia. I am trying to make a decision on where to go to get help. Can you provide who you are working with doctor wise? Appreciate anything you can help with....and GOD bless you for a healing.

How are you doing with this? Have you been receiving treatment? Really hope you get better.