I have CIRS, and looking for others who r, as well. So few Drs who even know what it is!!
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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.
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Hi. I was just browsing through here. Please do not just randomly take medication’s for this. You could have a severe reaction and in the meantime it won’t help. The treatment is super specific to each individual and there are steps that need to be taken we’re literally from what I understand, medication‘s are changed every 2 to 3 weeks and you have to deal with binders and things, need to be on a specific type of diet and throughout the entire detoxification your immune system will be fighting against you and apparently it is very difficult and I’ve heard some extreme words used to explain the steps of detox but I am looking for someone who will treat me before it’s too late.
@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?
I began suffering CIRS prior to Covid and never had Covid. It’s from toxic levels of mold. I’ve never heard anybody mention an association to Covid but from what I read, 50% of deaths are actually attributed to inflammation. I can’t even find a Doctor Who can help me and I’ve known what the problem has been from the beginning. I had to research things and have my primary care physician send me to different places for the tests I needed.
Hi. I most definitely have CIRS and tested positive for an extremely high level of biotoxins. Within 24 hours of moving into a new apartment I became extremely sick! I have CRPS and was supposed to have a procedure two weeks after moving in they could have actually finally put me back to work and instead I am almost completely bedridden now. I did finally move out of there and I am suing because my dog is also dying. Any medication‘s that you take might temporarily help with symptoms and I would only take these medication‘s if there’s no long-term negative affects and they are helping you along the way but taking prednisone is dangerous. I had a severe reaction to prednisone and aged 50 years and six months. Devastated me!
Nothing is going to work until you detox. As far as I have known there is not a single doctor that will do the detox unless you pay cash. I have not found any that take insurance and being disabled my income is extremely low so I’m just guessing I’ll die like this. I really don’t know but it’s getting so much worse that I’m crying Every single day. I can’t believe that someone knowingly did this to me and did not care! Every one of my organs is inflamed and I definitely have brain damage. I can’t see anything without glasses because of the black mold. It’s disgusting that this is going on , knowingly. My life has been completely destroyed! There was no question whatsoever that there was mold. I questioned them about the odor before I moved in and they told me the air conditioner was musty because it hadn’t been run in a while and that I should run it on low 24/7 and there was black mold and other types of mold on an inside the air conditioner and they literally were having bricks removed from around the air conditioners on the outside of the building because of black mold but they were just lying to the tenants! There was mold everywhere! Absolutely everywhere! The pictures I have are disgusting and then there was a flood from two floors above me into my bedroom closet and they did nothing about it! They just keep moving new people into that unit since I’ve left. I’m trying to get the building condemned after I destroy them for what they’ve done to my dog and me!
@boonay You certainly sound angry and totally defeated by all that’s happened to you. I am so sorry. If you can, let go of your anger and feelings of resentment. You will do better at healing your body, if your mind is at peace. I know, I was the same way. I was so upset and angry at the autoimmune disease that, I felt, had ruined my life. But I had good doctors and and a therapist who helped me rid myself of anger and depression.
You really need to put yourself in the hands of a good doctor and work with them to get well. You could try calling a medical center or university hospital and ask for a recommendation of a doctor who helps with mold toxicity.
You can always let out your frustrations here—we’ll understand.
Will you try calling a hospital to find a doctor?
Please stay in touch. I worry about you
A good doctor. Who? I’m disabled so I have horrible insurance and I have yet to find a good doctor. I have dealt with a lot of doctors giving me a wrong diagnosis over the last 10 years. I should be living a normal life but I’m disabled and I’ll have multiple poisoning because everyone has done the wrong thing and no doctors have cared I am going to just die this way because I’m 59 years old. I feeling that it’s impossible to rehabilitate so my options are either to cry all the time or get angry. And I’m doubting the possibility of rehabilitation because I am a nutritionist and a personal trainer. I have no support system, no good doctors and no good friends.
Hi there @boonay, I'm Rachel. Sorry to meet you under such distressed times for yourself. I typically hang out in the chronic pain support groups because I have my fair share of it, too. I'm familiar, not so much with auto immunes, but with CRPS and central nervous system disorders. Also, the misery that you are in feeling isolated and defeated, but you are kicking enough to be on Connect, that is a good thing.
Being a nutritionist and personal trainer tells me you have had an education and learned how to help people become healthier and motivated. You probably encouraged them to do better for themselves. If you were to look at yourself as a client or someone you cared about, what would you tell you? What resources can you pull from for help? Sometimes we treat ourselves way crappier than we'd treat someone else.
I'm glad you are out of that apartment. Good riddance! I'm curious who helped moved you in originally? Your posts have been focused on what you don't have in this moment…can you strategize about what you do have and build on that? Getting out complaints, fears and frustrations is great but staying in that space without moving forward wont get you very far. What resources might your insurance provide for mental health? My daughter is on Medicaid so I get the whole poor insurance thing. It can be challenging for sure. Have you found another psychologist since your previous one passed away? Mental health has to be a priority because it effects our physical health and symptoms and snowballs. It sounds like you need support.
Give yourself grace and move forward one step at a time. You got this! Stay focused, stay strong. You've come this far through adversity. That tells me you're a fighter. There is always hope for rehabilitation progress if you believe in yourself, persevere and don't give up. What's one small positive step you can you focus on for yourself and build on? Reaching out here on Connect is a great example of advocating for yourself. What next?
I am currently in really bad shape crying all the time. I thought the CRPS was bad but with the level that this CIRS has gotten too, just not being able to go out is not the issue but the constant suffering is just unbearable! This sweating, migraines, lack of sleep and the body temperature issues that trigger flareups of my CRPS make it impossible to function at all. Sleep, bathe, wash up, brush my teeth, change my clothes, eat, and care for my dog who is also dying from this mold. I have no support system. Everyone died that mattered to me. Insurance doesn’t cover treatment for CIRS caused by mold exposure. My brain is not functioning as normal and I get very confused so I can’t do this myself as it’s complicated enough but no other doctors who aren’t certified in this will even take a look! No one cares. I’m completely lost and devastated. What is a person supposed to do when they are this sick and can’t care for themselves? Insurance does not cover this. I can’t even get a ride to a doctor from my insurance. I don’t even have the ability to make a commitment to do anything or go anywhere because I am no longer capable. It has gotten probably about as bad as I think it could get. I didn’t know I would continue to get worse and worse more than two years after leaving that nasty apartment! I was sick within 24 hours of moving in there! This is absolutely the worst thing that could ever happen to a human.
I already have the most painful condition known to man over almost my entire body and the mold and CIRS IS SO MUCH WORSE!
The world needs to wake up. People should not legally be able to poison and murder people this way. This makes no sense. You say mold and everyone thinks you’re exaggerating and crazy. I cannot find any real help. I can’t make thousands of dollars appear from thin air to cover the cost of a detox physician and I can’t make myself capable of leaving the house or even caring for myself in the most basic of ways. Where does that leave me? To complain online and still contemplate what the heck I’m going to do at this point. Even five weeks ago it was not even close to this bad and I don’t know what to do. It’s hard enough for me to put a message in here because I’m crying and my phone won’t understand me. In the meantime I’m watching my little dog who is my emotional support pet who had tremors and then seizures from the mold which caused dementia. He’s walking in circles like he always does or he leans his head up against the wall. But that’s if he hasn’t trapped himself against the wall not knowing how do you get out. He has no bowel or bladder control. He’s weak and has trouble walking. I am his emotional support human now and it’s really hard to comfort him and it’s devastating to watch this.
My life was literally perfect before all this. I was one of those annoying positive and happy people by the seriously driven to where my daughter feared that I was so perfect that I would expect the same from her but, of course not. I would be amazed at how perfect my life was then all of a sudden in an instant it all changed. Then I finally had hope with a procedure that I could get my life back and instead I got mold Poisoning!
Because of all of the confusion and my daughter literally thinks I am a crazy person and is completely cut me off from all communication almost as soon as this happened.
This is what the state offers for people who become disabled and have to go into low income housing. They put them in homes which will murder 25% of them and they don’t care. They all know about it! I investigated for more than one straight year, day and night before I got this sick. After that I continued but not constantly as I became more and more sick but went through every level of the government in housing and otherwise all the way up to the governors office. I’m talking state and federal representatives, HUD, department of human rights, the Housing Authority, National Housing Compliance, IDHA, there are so many entities that I spoke to and they are all aware of this and they are all hiding it! They do not care. It is all about the money. They just want to shut me up! I can’t even find a news station who will listen. I thought perhaps that would be a way to get the information out there but no one cares. Especially when it’s during Covid time. They’d rather talk about some guy that found and old camera in the water and found the original owner on social media than a ton of innocent people that are dying because the government poisoned them on purpose.
How does one make sense of any of this?
Have you been to the ER? Have you contacted your church?
Have you contacted Catholic Charities? Social services? The Humane Society for your pet?
Here are a few resources that may be useful for you. Detoxing should be under the supervision of a medical specialist. It can mobilize things that your body stored to try to minimize exposure to them, and in detoxing, you can be exposed to these toxins again. There are different detox pathways in the body, and detoxing is a normal process that happens in life as your body breaks down compounds it uses, for example hormones in the body that control various processes, as well as dealing with toxic substances. If you are unable to drive, perhaps a telehealth visit with a provider would be beneficial.
Environmental Medicine Doctors
There is a provider finder link for them at https://www.aaemonline.org/
Functional Medicine Doctors
There is also a provider search at Forum Health for functional medicine doctors.
The pioneer in the field of Environmental medicine was Dr. Rea. You can contact the practice he founded at https://www.ehcd.com . There is some information on their website and they do treat toxicity.
Here is a link to their page about Mold
This lab tests for environmental issues like mold toxicity and has some educational content. https://www.greatplainslaboratory.com/
This was a featured blog
Here is a link to an article about mold exposure testing and treatment
These are links to manufacturers of supplements often prescribed by doctors to aide in detox.
Some pharmacies sell these over the counter such as specialty pharmacies that do compounding like https://www.waucondapharmacy.com/
There are also online pharmacies that sell supplements for detox and you may be able to talk to a pharmacist about what may help you.
I hope some of this can help you find what you need.
I’ve been following Shoemaker for the past few years. I have reached out to a number of doctors that are certified and none of them will return a call to me or to my primary care physician. I most definitely need to do this guided by a educated doctor and not go through this on my own with the supervision of a doctor because if they don’t specialize in this they don’t know anything about it and will not take part. It’s so complicated and with all the confusion in my head now because of CIRS I am having a hard enough time just getting through the day because I feel like I’m a complete idiot. I did find a doctor in my state that I can call off of your list. One of your lists was not accurate in giving me a doctor. It turned out to be just a PDF on the environment. If you would like that information please let me know so that his name can be removed from the list. I already know what I should eat and what I shouldn’t even though there are a number of contradictions in the information online. There’s absolutely no possible way I can tell my PCP to keep ordering all these tests and then go and get the medication‘s on my own in the correct dosages and know how long I need to be on each medication or supplement until need to move onto the next and so on. This whole thing has to be controlled by a doctor. I am in bad shape and got this way very quickly! It had CT scans on my head, chest and abdomen and every organ is inflamed and I have kidney stones. Sodas my dog. I will definitely call the one doctor and see if they will just do virtual visits because they are several hours away. I’ll keep my fingers crossed that they will take my insurance! I’d be perfectly OK with that doctor just ordering tests, ordering supplements and telling me exactly what to do because I will stick to it no matter what. Thank you!
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