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Aeryll

Updated 1y ago

My Journey with Chronic Illness and Alternative Treatments

Hi! I’ve been dealing with chronic illness since around 2010 when I first started exhibiting symptoms of chronic fatigue. Most conventional medical doctors have told me I have to “just live with it”. I persisted until I found a provider willing to try various treatments and stuck with her for about 3 years. We tried multiple things, but nothing worked or I experienced too many side affects. These were not treatments to cure anything but to alleviate symptoms. The above doctor let me know she had nothing else to offer and then went on a sabbatical she never returned from last year. I had seen a functional medicine doctor in the past so decided to try that route again and was able to find one who is non-binary/queer like and who specializes in chronic illness. The difference has been night and day. They believe I was misdiagnosed all these years with CFS/ME and that I actually have a couple other things going on - mold exposure and possibly Lyme disease. I was tested for mold and came back positive for 2 different types, borderline for one other. We are currently treating the mold and once that’s finished we’ll be doing a challenge test for the Lyme (lab testing would be $2k out of pocket, not covered by my insurance). I’d love to hear about anyone else’s experiences with mold exposure/infection and/or Lyme disease. Also if you’ve tried alternative treatments for chronic fatigue and/or body pain, including any treatments that touch mind/body/spirit since I believe all 3 influence each other for wellness.

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Knightstarr

2y

I have told multiple doctors for years that I have a mold infection and they never even wrote it down. I also have fibromyalgia so they just assume that all of my symptoms are from that. I have never been tested or anything. I know 💯 that I have a mold infection. I lived in a basement for 8 years and there was literally mold on EVERYTHING, it was even inside my water bottle after I washed it and sanitized it 🤦 What exactly did you do to get the doctor to run tests and do you know what the tests were called? I feel like a lot of my symptoms are greatly exaggerated because of the mold and I have moved to a cleaner place and want to get treatment.
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Aeryll

2y

@Knightstarr, I’ve had similar experiences. I wasn’t really thinking of mold but I’ve tried to get tested for Lyme for years and doctors just blew me off. But when my current doctor brought up mold and how I had really classic symptoms for it, it made sense. I knew I had lived in places with water leaks a couple of times. My doctor is a “functional” or “integrative medicine” doctor. If you Google in your area “integrative medicine + your city” you will likely get hits. Mine is a naturopath who used to be a researcher and has studied with MDs. Basically they give you the best of both Eastern and Western medicine, are more open-minded and are willing to prescribe alternative treatments that I have personally found very effective. Mine prescribed medication for my high blood pressure while also prescribing supplements, herbs, etc for other things. I got the mold testing through Real Time Labs - my doctor had to fill out the order and I sent it in along with a urine sample and payment. The lab isn’t contracted with insurance but if yours covers out-of-network labs you might be able to submit a claim and get at least partial reimbursement. It was about $400 out of pocket and they tested for 16 different mycotoxins (molds). Realtimelab.com/mycotoxin-testing .
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Chet33

2y

Mold exposer here. Lymn is also very high in my area. I got my house remediated and now i am detoxing my body of it. My doctor, who is a world renowned pathgen expert amoung other things doesn't work with insurances. Reason being, doctors can only do what insurances tell them they can. So often people get mis diagnosed or just can't find out what the problem is. My doctor actually believes in finding the problem and fixing it an not just slapping a band aid ib the symptoms. Acually a lot of doctors in the surrounding area are getting mad because he is healing all their patients. Who knew that was a bad thing? Anyways, he also treated a friend of mine with lymes. Who literally was bed ridden, writing goodbye letters to her kids because she was dying. She is back on her feer, works as a full time mom and part time at a school amoung other things. If you can make it to Utah I know a fantasic doctor. I think he might have offices in other states too.
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Knightstarr

2y

what are you doing to detox? I moved out of the mold infested basement around 6 months ago and I am still having a lot of issues with the mold infection. Digestive issues, skin issues and my fatigue is horrible since I had covid last year. I feel like I would be a whole lot better if I could get all this mold out of my body
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Chet33

2y

Also if you are still struggling from Long Covid my doctor who is a world renowned pathogen experts, put me on a regimine of vitamins and one of the drugs that "shall not be named" for adult dosing. I can send you that as well if you want. Flccc.net is great for anything covid related. You can find doctors who will actually help you. Telehealth appointments and you can find pharmacies that will fill what you need and ship them to you. Thats how I got over my long covid.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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