Does anyone suffer from CIRS (Chronic Inflammatory Response Syndrome)?

@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:
https://connect.mayoclinic.org/discussion/clipperslooking-to-connect-with-others/
Will you try and look for a neurologist ?

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?

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

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

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

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..

Hi there, thanks for checking in. I'm still healing, however have come a long way in 8 months and I want you to know that hope is possible. I'm sorry to hear you think CIRS may be your root cause, however knowledge is power and having a diagnosis is huge in healing. I hope you feel encouraged to keep seeking answers.

As a first step, I would recommend finding a naturopath/functional doctor that specializes in CIRS. Next, work with them on testing to find out what exactly is going on internally (and perhaps externally) if you're dealing with mold. It's possible you have the MTHFR gene that limits your detox capabilities. I grew terribly ill in an apartment with mold, however my partner was fine. Everyone is different. You can test your home using the ERMI swiffer sample.

If it's mold related, it's likely past infections may have reactived from your weakened immune system. I had lyme when I was 11 years old that was dormant until I became ill. Treatment will be specific to you. This includes getting out of exposure (if mold related) opening drainage pathways (dry brushing, saunas, detox baths, movement.) Then introducing binders, herbs, and in some cases a 3-6 month dose of an antifungal if there is mold colonies within the body. Your functional doctor can help test for these things. Sadly, most of this is not covered by insurance however you can request the initial labs be done through quest/labcorp to help with some of the costs. Not all labs will be able to be done this way.

I'm simply sharing my experience and journey, however yours may be different. If you want to chat further 1:1 feel free to message me and I would be happy to connect. CIRS can be so isolating and challenging for the person affected and family/friends. You aren't alone and like I said, there is hope.