I have CIRS, and looking for others who r, as well. So few Drs who even know what it is!!
Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.
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?
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It was my psychiatrist that passed away and I’ve found one but not in time to refill my medication and no one will refill my medication. This is just so ridiculous. These horrible Medicare/Medicaid doctors make day-to-day a nightmare. Being told to go to the emergency room because you run out of your antidepressants is ridiculous! I just feel like every outside entity wants to fight back in regards to every little thing in my life and it’s just all wearing me down, I know you’ve noticed.
Have you been to the ER? Have you contacted your church?
Have you contacted Catholic Charities? Social services? The Humane Society for your pet?
Kind of confused. What could they possibly do? I went to the emergency room way way back a few months after I got sick and all they did was read my CT scans I wonder what the hell is wrong with me that caused every organ to be inflamed and told me to find a doctor. If I’m suffering too much and go to the ER I have learned that I should never do that because I have been called a drug seeker because I am already on pain medication but I refuse to abuse my pain medication so I will not take more because I will run out early and I will be screwed. The only way an emergency room will help me is if I don’t tell them anything about my CRPS or my pain medication And I’m not one who likes to lie. I’ve never asked for any type of pain medication, only told them that I was in severe pain and I’ve had many people tell me to my face or talk about me when they think I can’t hear them stating that I am a drug seeker. If someone with CRPS is in so much pain that they go to the hospital, it’s serious! To be treated like a junkie is so insulting and just makes things much worse because anxiety exacerbates pain. I’m already on pain medication for my CRPS which no one at any hospital I’ve been to has ever heard of. As far as the dog, there’s nothing that can be done to save him. Early on the veterinary and didn’t seem to believe me when I told them that we were both sick from mold exposure and that I was sure of it. After paying for an x-ray for them to tell me what I already knew they have refused to ever vaccinate him because they said it could possibly kill him. My car is not even running so I don’t even have a way of getting him to the vet when he dies. This has been one of my other huge concerns. My situation is pathetic.
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! Well, I'm in a similar (not fun) boat. I was exposed to mold for a long time (pillows and mattress) and also had a boil removed on my inner leg and ever since then, have been dealing with staph infections…I just haven't felt right at all for the last 6 months. I did a round of antibiotics (just super hard on my body) and now I'm dealing with some boils popping up at times, dizziness at times and strange stomach/liver problems and needs detoxing. What I'm finding helps is Hibiclens, boosting my immune system (probiotics, Vit. C, Vit.D, Calcium, multi and eating really, really well! Also, eating no dairy, no gluten, no sugar (as much as I can) and no or very little processed foods. Also, intermittent fasting helps too. I'm also post-menopause, which doesn't help anything. I've tried NAC (but, not sure about it long term), I love turmeric (liposomal) and I'm taking some tinctures prescribed by a naturopath. I'm also dealing with H Pylori and leaky gut…trying to heal all of these things. I really want to get better and stay better!! I'm in both camps of naturopaths and amazing doctors at Banner Health, Honor Health and of course, Mayo Clinic!! 🙂 I see the power in both sides…healing is what I want, for good! 🙂 Please let me know how you're feeling and if you have any tips for getting better and staying better. Best to you!!
This sounds like my story with Lyme and mold. Thank you for sharing helpful information.
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
Why are there restrictions to medicines? Do you guys have law enforcement practicing medicine? Seems to be the case in the US. Doctors who don’t stand their ground lose power and respect in the process. I think doctors ought to stand together, put the patient first, and then they will perhaps maintain their livelihoods.
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 started having symptoms in 1996. Mine also came from mold. The mold came from a cheap early 80s building product called Masonite which rotted easily in Va. Off gassing from chemicals was also there. But, that is my opinion. There was absolutely no one to turn to. Dr. Shoemaker’s info and later, his books helped me. Also, getting into a brick home with old heating system helped. Central air makes me feel awful.
I do..if I get upset..I feel like I am on fire. Terrible. What causes this? Stress?
I wondered if my dog had been affected also. He developed a cough which I now have pretty much under control, and also allergies to foods which we adjusted to also. We’ve been away from mold for almost a year now. I had no idea what I had between Lyme disease,, mold, and I believe a week of co-vid, and was in too much severe untreated pain to find out. I still am. I couldn’t have my cataract surgery this morning for waking up in pain after two hours of sleep, a repetitive thing now. Again through sharing I've learned more info. Thank you all for sharing.
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 would like to talk in person. 80 years and slow to text.
@marshasanger Welcome to Mayo Clinic Connect! I’m so sorry that texting or typing is difficult for you. Unfortunately, that is the only way we have of communicating. Connect tries very hard to protect everyone’s name and phone number. Do you have a family member or friend who might help you with typing?
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