I have CIRS, and looking for others who r, as well. So few Drs who even know what it is!!
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@sunnyred2247 I had to look up chronic inflammatory response syndrome because I’d never heard of it. The CDC says that is an assault on the immune system caused by bio toxins and is caused by, or related to, covid-19. Additionally, most doctors haven’t heard of it because it is so new and un-researched.
Have you been to a ‘Long-Covid’ clinic in your area. The staff there might be more familiar with the syndrome.
What has your doctor explained to you about it?
@sunnyred2247, I'll add my welcome and tag fellow members @ashleycirs and @massi who also have experience with chronic inflammatory response syndrome (CIRS).
In the meantime, can you share a bit more about your experience with CIRS?
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Becky… that’s very interesting and rather odd. Perhaps there’s another newer form. My CIRS was as a result of living in mold, and the mold permeated all of my cells… mycotoxins.
I had never heard about it 😳 I got progressively ill after a “upper respiratory infection” symptom like episode (i just felt I couldn’t breathe and tightness) in October 2021 and a lil bump on my tongue that popped but went away without ulcerations it was like a inflammation on a few papillae. The nose swab was negative (even on multiple ERs) but I keep getting worse with palpitations and GI issues. I couldn’t go back to work. I had been running like a chicken without a head cuz I’m thinking it’s cancer (history of neuroendocrine cancer 2019). I did mention this to all my doctors and nobody seems to understand or correlate it to. I got tired and got (bought myself) a blood test 3 month ago (I should have gotten it sooner considering my pattern but no doctor or hospital did it), I had high antibodies for SARS and my last vaccine was the 2 booster by the time of the second booster… so now I ask everyone and seems like nobody knows if it’s just remaining vaccine antibodies or that I was exposed that October 2021 and I got everything from it. As at right now I have been diagnosed with Hypermobility Spectrum Disorder HSD (relative to hEDS/EDS) and Postura Orthostatic Tachycardia Syndrome POTS (there’s evidence linking POTS to long Covid patients). For now I just wanted to know what CIRS looks like to real people, to see any similar patterns in my case. I had to take my journey of finding accurate diagnosis on my own hands unfortunately because I would be labeled mentally in a way that is wrong and with probably bad intentions or lack of knowledge (just to give the benefit of the doubt). If it’s not to much and you feel comfortable what where your experience before and after your CIRS diagnosis?
Thank you so much in advance for any feedback 🙏🏻
Many of the Covid vaccine-injured patients have POTS. Long Covid and vaccine Long-Haulers share similar pathology (toxic response to the spike protein). Education and support regarding neurological vaccine injuries is available by joining the Neuro V Long-Haulers Facebook group. Most physicians are in denial or have not been educated about Covid vaccine injuries.
Wow… my heart goes out to U!! Mine is a longggg story, and I’m still desperately trying to find help. Was just in the hospital and NOT ONE NURSE OR DR. Knew one thing about it!!!
Before being diagnosed I had 6 years of a myriad of odd infections, severe explosive diarrhea that didn’t respond to any of tge many drugs prescribed ( couldn’t leave the house)., much mucus and constantly blowing my nose. I’m now experiencing issues with pain/numbness of legs… While. I in the hospital I had numerous MRIs… showed inordinate amount of white lesions on my brain… they ruled out MS … many CIRS pts have been erroneously diagnosed with MS. I hope I’ve answered some of ur questions I’d b More than Happy to speak with you anytime if u felt it could be beneficial. I’m Doctored out!!! U REALLY DO ALMOST HAVE TO BE UR OWN DIAGNOSTITION!!!!! Sad
@sunnyred2247 You sound like me about 5 yrs ago! I didn’t have diarrhea, but i did have almost explosive vomiting for no reason. The anti-nausea/vomiting meds the gave me didn’t stop anything. I lost 20 pounds. When i was almost non-responsive, i got an MRI which “showed inordinate amount of white lesions on my brain.” Most doctors only thought of MS, but it wasn’t. When i was almost non-responsive, my husband took me to a different neurologist at UCHealth who diagnosed me with ‘chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids.’ It is one of the newer autoimmune diseases. Also called CLIPPERS. Steroids helped me immediately.
See if you can get a copy of your MRI or have it sent to major medical center or teaching hospital near you.
Mayo Clinic has a discussion group on CLIPPERS:
Will you try and look for a neurologist ?
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
I got the first dose of Pfizer on 03/22/2021 and immediately rapid heartbeat 140/min. In the next few days, I felt shortness of breath. In three weeks I developed dyspena, POTS symptoms and sweating. POTS symptoms took half a year to recover. But my dyspnea never gets better: the air flow of my nose is decreasing every day and I am exercise intolerant. Pulmonary function test show my MIP/MEP (maximum inhale and exhale pressure) is extremely low. Cardio-pulmonary exercise test shows my peak O2 is only 30% of the normal value. No lung and heart problems. Lung doctor suspected it might be related to respiratory muscle weakness (neuromuscular disease disorder). Went to the Mayo Clinic, and ruled out this. I also have other neurological symptoms: muscle fasciculations, and uncontrolled body movement. Mayo Clinic movement disorder specialist ruled out the disease. I posted my case on early 2022 related to long covid. At that time, I didn't see much of reports related to vaccine side effects like me. Now, there is extremely few air flowing out of nose and I am easy to get fatigued. It makes me and my family in hardship! How could we get compensation for the unfortunate?
My 2.5 yr old and myself have been diagnosed with CIRS. In fact the pediatric infectious disease specialist was the one who diagnosed my son. Our CIRS is directly linked to our home and the fungi/ mold that we have been exposed to. It’s beyond flustering that CIRS is not fully recognized in western medicine yet and therefore means we have to pay out of pocket since insurance won’t cover it. I’ve done intense research for treatments and the only place I trust is going to be a clinic in Texas, which was just given the honor of being a center of excellence.
Environmental Brain Health Clinics of America
I feel your frustrations and all the emotions!
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