1. < Autoimmune Diseases

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

Posted by sunnyred2247 @sunnyred2247, Oct 26, 2022

I have CIRS, and looking for others who r, as well. So few Drs who even know what it is!!

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willwingert | @willwingert | Apr 23, 2024
In reply to @bayhorse "Could you please tell me what type of physician diagnosed you? I go to an integrative..." + (show)
@bayhorse

Could you please tell me what type of physician diagnosed you? I go to an integrative pcp who does lots of testing for mold-born, tick-related and other illnesses that traditional doctors don't know about or bother with, but still have never heard of CIRS.

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Go to a Shoemaker certifed practitioner. Go to survivingmold.com You can find one in your area. Note: they are ALL out of network

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boonay | @boonay | Apr 25, 2024

I already tried that. Reached out several times to two different Shoemaker dr’s and my PCP reached out to one. No one ever replied. This was about three years ago.

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lymecirsmcsarereal | @lymecirsmcsarereal | Jul 7, 2024

CIRS, like countless other very real and treatable conditions such as chronic lyme disease and confections, heavy metal poisoning, Multiple Chemical Sensitivity just to mention a few) are ignored by Mayo Clinic (or considered psychosomatic, it s such a joke).
Your guides to healing: 1) book by Dr Neil Nathan Toxic, lists exams and protocols, he considers both reactivity (CIRS) after mold exposure AND colonisation 2) Shoemaker protocol: it has its limits, but it's still a valid approach to detox from mycotoxins, also invaluable the notion of mold avoidance 3) if your symptoms are very serious, consider a more radical approach, Erik Johnson's Guide to Mold Avoidance will show you how to reduce the sensitivity with long-term avoidance (I confirm first hand it works) 4) There have been several online conferences modelled after the Lyme Summits by Dr Jay Davidosn, and a couple are called Mold Summits, with many presentations outlining different approaches. After the event you can access the talks by paying, but if you are lucky there might be a new summit coming up, and that is free to watch during the event days. That's all I know, I hope this helps someone. I sincerely hope that mold illness and CIRS, like other environmental illness become recognised by Mayo clinic, so much suffering that could be completely avoidable.

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lymecirsmcsarereal | @lymecirsmcsarereal | Jul 7, 2024

Jay Davidson, not Davidosn

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bluejayga | @bluejayga | Oct 20, 2024
In reply to @bfreeece "Hi there, thanks for checking in. I'm still healing, however have come a long way in..." + (show)
@bfreeece

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.

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Hello, has the condition fully subsided since starting treatment over a year ago?

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jpt022 | @jpt022 | Feb 5 3:41pm
In reply to @bfreeece "Hi there, first, I know exactly how you are feeling. I am an otherwise healthy 32..." + (show)
@bfreeece

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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Hi, have you recovered from Cirs ? / how are you doing these days?

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lud60 | @lud60 | Feb 6 12:53pm

I was called a canary by my functional medicine NP years ago. Function medicine has changed and possibly saved my life. I was diagnosed with CIRS 2 weeks ago. One more on a long list. Since 2018, they have been managing my hormones and Hashimotos hypothyroidism with excellent results. It had come to the point that traditional doctors were not making eye contact and saying come back in 6 months. When that happens, they are giving up on you. I’m still working full-time and will turn 65 in April. My medical condition and quality of life is much better than in my 40s. I am struggling with all of the information and diet for CIRS, but I am thankful that the information is accessible.

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asf1234 | @asf1234 | Feb 7 6:57am

Dr Susan Levine Infectious Disease doctor in NY. She takes insurance (she’s nutty but I’ve been a patient for 11 years and still going) and all you need to really do is tell her everything, she will send a blood request (even if you live in NY she does it this way unless you can drag yourself to her, but not necessary). I know about the mixed reviews on line. I don’t care she’s a genius and really listens to you and believes you. And she is a ME/CFS and Long Covid specialist. I hope she can help you.

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