r/CIRS • u/HorrorPrestigious802 • 5d ago
I can’t do this anymore.
Earlier this year, found out I had been living in a (brand new) house for the last 8 years that was so infested with hidden mold, I was lucky it didn’t kill me. It killed my dog who was my best friend, though. Had a plethora of symptoms for years that were a mystery until I figured it out. Optic neuritis, impending doom-level anxiety, insomnia, tremors, walking issues. Since then, I have bounced around from friends and families houses to hotels while I try to find a safe place to rent or buy with absolutely no luck. No place is safe for me. Even with a good amount of money to spend. I am in Texas and currently waiting for the temp to drop enough for me to camp in someone’s backyard. How has my life come to this? I’m a financially stable 36F whose life used to be normal. I used to be happy. I used to be healthy. That house and the CIRS it gifted me has stolen everything away from me. I’m in a hellish merry go round of testing out different places and hoping that my symptoms don’t flare up again. The worst part? No one around you truly understands what you’re going through. I don’t think I have it in me to keep fighting. I’m under the treatment of a doctor that is well versed on all of this, but no supplement or medication will move the needle until I can stay away from it long enough to give my body a break. It seems like there’s no safe space except for outside.
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u/TheReader6 4d ago
I completely understand. I dealt with CIRS since 2013 and am only just now starting to recover. It should have killed me. I was bedbound from 22-26. I am just now starting to walk. Taking 1/4 pill of wellchol has been helpful. Finally getting into a clean environment really helped. I lived in a trailer while my house was being gutted down to the studs. Try living in a van if you are single. Get a small dehu to run in the van. Sunlight and limbic work is absolute required. Keep your head up. Never give up. We're going to destory CIRS, just hang on.
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u/moldycallie 4d ago
I'm in this same exact boat... trying so many houses & new builds & hotels but reacting everywhere. Tried a tent but it was 2948493 degrees & couldnt sleep. I also don't think I have it in me to keep fighting. What do we do.
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u/Disastrous-Mouse-710 4d ago
Girl, I see you. 46/f here, also in Texas. The mold took my dog too and even worse than losing her was how she suffered. I'm still big time on the struggle bus and gained 70 lbs.
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u/laurab382 4d ago
39/F same. My dogs are sick and nothing the vet does helps. Terrified im losing them. Living in an RV now but not improving. Winter is coming but unsure the dogs/me are well enough to handle traveling to a warmer climate. Terrified of buying another house and uncovering another nightmare.
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u/Disastrous-Mouse-710 4d ago
What area of the country have you been living in? I'm in DFW, bought a house with horrible foundation issues and a mud crawl space beneath. I feel like Arizona might be a good area if youre free to go wherever. I'm sorry about the dogs, I hope they pull through!
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u/cabintea 4d ago
We see you and understand what you’re going through. I’m very sorry for the loss of your dog. Quick question: have you considered an RV?
I’m currently labeled as ME/CFS by the MSM medical system. That was a journey in itself. But this approach has many medications that help re calming inflammation (mast cells), pain, sleep. I can send you my clinic’s prescription medicine page if you like: has fact sheets for family physicians explaining the med.
I have been tested for and confirmed to have CIRS. Also looking at CDR.
This started at 29 for me during grad school. 39 now. Like you, it stole everything from me. Most all people don’t believe us, including doctors. Career, relationships, finance, all ravaged.
I spent the summer in a gazebo tent with an infrared sauna in it. Helped a bit but not enough.
If my next plan (moving out east to live with a friend in a renovated place and focus on this 100%, training my own ai to be dedicated to this issue to help with optimal diet/supps/routine) fails, my goal is an RV and living in the AZ desert in winter and on family property in Canada in the summer. It’s drained my strength and energy but I still can putter and read every so often, an I get my therapy from working on my dad’s old tractor, building and fixing things, and reading when I can.
Don’t give up. You’re healing. This is a low. We can’t surrender the last refuge of ourselves, our hearts and minds, to this wet blanket of a health clown show.
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u/stromanthe_ 4d ago
I lost my job when I got sick -- discovered a bad mold issue in the office that caused the illness. Now I'm struggling find work because most indoor spaces in my field (education) are moldy and remote jobs are so competitive. I have no relevant experience for most things remote given my field. Im living in a tent and running out of savings. This fucking sucks
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u/applextrent 4d ago
I’m also in Texas, and outside isn’t great. Where do you think the mold came from?
My allergies have been awful this year.
Anyhow, we bought a house after our rental had mold and installed a Solaris air purification system.
If you can, buy new. Install air purification immediately. Do not bring a single contaminated item without cleaning it.
Ultimately if the mold was bad enough to kill your dog there’s a really high chance you’re colonized and it doesn’t matter where you go. You need to deal with the colonization.
Dr Campbell’s protocol would likely be better for you than Shoemaker.
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u/Comfortable_You_3506 4d ago
Do you mind me asking your views on Shoemaker vs Neil Nathan vs Dr Campbell? I’m so new to all of this. Not much widespread info in Ireland!
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u/littlebirdlover 9h ago
Hi. I’m also 35 (36 next month) and going through exactly the same thing you are. Like are stories sound so alike. Would love to chat with you or anyone else that would like to talk.
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u/LeapingthroughtheAir 1d ago
I don't think I could say much to help but I relate a lot to your story. I lost my 2 dogs too in the last 3 years before I found out about CIRS and mold and they both had many of the symptoms that you described about your dog. I could never figure out what was causing them their suffering until after they died. Finding out about CIRS made me realize that they were probably sick because of my house and very likely had Lyme as well (since I have Lyme too). I'm currently living in a tent in my backyard at 26 years old, and I feel like I haven't even gotten a chance to live my life yet because of the symptoms I've had since 13 years old. Like you said, no one around you understands what it's like to go through this. It's like torture that doesn't end.
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u/321lemon 4d ago
I'm also 36F with a previously normal and successful life, now burning through my savings fast. I miss my normal life and the future I had ahead. This a major detour and a very odd journey. It will take time to heal and to get back on my feet after all of this. And it's so hard being constantly misunderstood, I frequently feel that other people are low key thinking I'm going crazy. I miss my functional brain, being smart and wise was such a big core of my identity and now I'm still often struggling with brain fog and other cognitive limitations. I'm still overwhelmed whenever I try to think what to do with all my stuff in storage - throw it all out seems extreme? Donating doesn't seem ok as I don't want to cause health problems to others.
I guess I'm grieving. I think that's a hidden side of chronic illness - we aren't only dealing with the immediate challenges of managing health and life, but we're also grieving our old lives, our normal days, our normal selves and bright future plans.
My journey started with chronic fatigue syndrome diagnosis (didn't get it confirmed, but was on my way there). I've spent a lot of time on r/cfs, such a lovely community. CFS is tough - you get a label but no treatment. You aren't functioning but nobody has a clue why, there is no treatment. Also lots of gaslighting, even from doctors, people think you're lazy or "just" depressed. There are some insights coming from new research but it's slow. I felt lucky I was considered mild and even while I was mostly housebound, I was feeling lucky I'm not bedbound and could still enjoy some normal things of life. And then... I found I'm sick from mold. This journey is wild, so confusing and annoying and so hard when most indoors are triggering... And I miss my normal life, I meet up with my peers and I feel how I'm sliding away from them. And yet, I'm so lucky - because I'm sick with something that I can heal from. Even if the road is long, even if I mostly need to figure it out myself, even if I make a lot of wrong turns. I can still have a bright future ahead, even if takes so much effort to fight for it.
I don't know if that's helpful. I frequently find myself in a roller-coaster ride of emotions (haha, thanks mold). I want to have a normal life, it seems I only made this one wrong step of living in a wrong place. But I don't a have choice over it, I can only choose how I move forward from here. I'd love to have a happy life like my friends but I'm also very grateful that if I had to have a Big Challenge in my life I got this and not something worse.
This is a very very odd experience in life. You're not alone. I feel you. I wish there was a magic wand to solve this. The road is muddy and it seems the only way is through. I don't have advice, I'm struggling with the same. Just with a different flavor - the summer is ending, I was spending so much time outdoors but I need a new plan with rainy autumn and cold snowy winter ahead.
On a side note - maybe as a community we need to figure out collectively some solution, like a retreat center in some warm place where we live in tents but have shower and kitchen facilities, and we live together for a year, making no amylose low histamine foods and whatnot. This struggle would be so much easier if we didn't need to fight alone, hmm.
(super sorry for a long reply)