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 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 ?
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You need to get a brain mri with neuroquant
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?
What you have suffered is awful! I'm so sorry! Both Covid-19 and vaccine injuries can cause microclots that block small blood vessels. I'm wondering if the microclots could be the original or ongoing cause of your dypsnea. I developed sensory and motor nerve damage due to the Pfizer vaccine, which appears to have been autoimmune-mediated. You may have had both the autoimmune reaction provoked by the vaccine, which damaged your nerves, and the microclots, which damaged your lung function. Another possibility is the microclots also damaged your nerves. The microclots don't show up on conventional tests. It would be a good idea to join React19 and/or the Neuro V Long-Haulers Facebook group to become educated about vaccine injuries. The federal vaccine injury compensation program for the Covid vaccines is the Countermeasures Injury Compensation Program (CICP). The vaccine injured are encouraged to apply even if more than one year has elapsed. But essentially no one is being compensated. The hope is that some day we will be.
I haven't read the full thread yet, as I have only just made an account to comment.
Just wanted to let you know that after a lot of self diagnosis due to useless doctors, and weighing up what symptoms could be due to long covid. After nearly three years i've finally managed to find the correct diagnosis of CIRS.
It's been the worst three years of my life, and I am only just starting to be able to make some headway toward getting back to normal after nearly 6 months of sleeping in a makeshift isolation bedroom.
I haven't gotten much further than being able to think slightly more clearly, and some steps toward getting my mobility back, but it still sucks.
Being in Australia, there aren't even any labs capable of running the complete screening blood tests that can indicate whether or not it's likely that you have it.
So I'm at an impasse medically.
I have a decent GP now, but the infrastructure doesn't exist to test for it.
The only way is to have one of two doctors in the country, who both happen to work on the other side of the country; send off the blood samples to a singular lab in Brisbane capable of running the first round of testing. Then send the blood-work in dry ice, to one lab in the US.
There is no pathway for actual medicinal treatment, due to the strict guidelines around prescribing the applicable medications.
So attempting to get better is very slow going at the moment
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
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.
I'm hoping you all have figured out what's going on by now, but it can be tough to figure out (it took me 8 years), so I wanted to point you in the right direction and save you some time.
I was recently diagnosed with CIRS and although a virus or trauma may trigger symptoms, a biotoxin (mold, tick bite, toxic algae, etc) can turn on certain genetics. This is what makes some people susceptible. 24% of the population is susceptible to CIRS, aka Biotoxin Illness or Mold Illness.
There are CIRS doctors in the U.S. that you can connect with, CIRS require very specific blood testing for diagnosis and very specific treatment that involves both cleaning up your environment and body.
It's quite complicated to understand and address. Please go to SurvivingMold (.com) for the most valid and up to date information and a list of doctors who can help.
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, First of all I sympathize with what you and your daughter are going through. I'm still healing. however have come a long way in 8 months and I want you to know that hope is possible. She can get better. It's not a quick progress but I have come a LONG way and know she can too if she is dealing with CIRS.
To answer your question, I went on prednisone several of times while I was still undiagnosed. Personally I did not find any relief with this. While it may temporality lower the inflammation, it's not getting to the root cause and comes with many side effects.
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 she is dealing with mold. She could have the MTHFR gene that limits her 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 have reactived from her weakened immune system. I had lyme when I was 11 years old that was dormant until I became ill. Treatment will be specific to her. 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 her 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 hers 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.
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.
Does anyone know of doctors that treat CIRS in the Chicagoland area? I am in the north suburbs. I have CRPS and it was looking forward to a treatment two weeks after moving to a new apartment and the treatment can you possibly put me back to work part time for the first time in eight years. I moved into my new apartment and became incredibly sick at the time I woke up the first morning. Bottom line is the place was filled with mold, the entire building was but my unit was the worst how am I all they did was lie about it and didn’t care, because I’m disabled and low income I had waited five years to live there and my small emotional support pet is now dying after never being sick a day in his life and I am getting worse very quickly. I live there from August, 2019 until October, 2020 as it was very difficult trying to find a place but I did. I’m 59 years old and feel like getting better is hopeless at this point.
I’ve never had a doctor call me back that is certified in detox and my understanding is that none of them take insurance anyway.
I will take any suggestions. Running back-and-forth to a bunch of different places for tests and things is not possible either. Very desperate!
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