Mold Toxicity

Hi @glenbI I think I found this thru Devine Intervention! I've been sick for a very long time. I just found part of recent concerning issues are due to mold discovery! I've not been to the Dr yet but I'm headed there soon. I'm glad I have a direction to start. Luckily my doc is an old-school, extremely thorough kind of guy. I noticed you mentioned narcolepsy above. I was diagnosed over 10 years ago with severe narcolepsy. I didn't think that had to do with now tho. I have a mild TBI from a car accident and also chronic pain issues. I'm trying to think of timeline when these started and I believe it was before I lived in this home (current mold issue here.) Are you of the belief that the mold caused narcolepsy as well?
I must tell you I'm not substituting for medical advice but I have a bit of hope that things may have an answer finally. Thanks for sharing you're story!

I have toxic mold poisoning for 2-3 yrs . Inside one of our outside walls was full of toxic mold and we were unaware of it . We had 3 of the most toxic molds there is and the mold experts tested air quality outside it was 300ppm and inside 18,000 it was airborne and very bad . We moved in 3 days . Since I have lived through this hell and I have learned A lot about this . Bleach alone will not eliminate toxic black mold. Yes it will turn white and appear to go away but the bleach will not eliminate the spores. The spores will attach to all of your belongings . We had to throw away 95% of our belongings. If you don’t do this when you move you will take the mold with you . I had been to about 15 Drs when I was sick for the first 18 months and we had not discovered the mold yet, and they could not figure my case out . I had done so many tests and lab work and procedures done it was crazy. Then after we found the mold I have 3 more doctors and they are trying to help me . People will think you are crazy when you have this . There really is no cure but there are some actions you can take to help you contact me anytime by Text or email and I will be glad to share my experience .i want nothing out of it I just hope to help anyone I can because this is a horrible experience .

I find all of this interesting on the Mayo Clinic website. I just got off the phone with them and I’m desperate for someone to give me an actual diagnosis even though after getting my urine analysis back and doing the VCS vision test, reading up on mold toxicity I KNOW this is what has caused my chronic pain.
My husband wants validation and a real doctor to give me a diagnosis and plan and I just want to make myself and my mom healthy. She has been diagnosed with early onset dementia and she is 64. Ive never been more certain in my life that this is my issue after living in chronic pain DAILY 24/7 since 2013, my head feels like it is going to explode, I can’t think anymore, I’m short of breath, I have GI issues that are intolerable and down right desperate to be a human again before I feel neurological damage is done for good. I was praying my call with the Mayo Clinic today was going to be it. It’s not.
Any help, I’d take it. What blood test to ask my doctors for, etc. they all look at me like I’m crazy.

Hello @chronicpaingirl15, Welcome to Mayo Clinic Connect. From what I've read, testing for mycotoxins in humans is a simple and usually noninvasive procedure. In most cases, only a urine sample is required. I'm wondering if this is the test you were given at Mayo Clinic. I'm not familiar with Mycotoxin testing but there is some information on the Mycotoxin tests National Institutes of Health website here:

Mycotoxin Detection in Human Samples from Patients Exposed to Environmental Molds
— https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680627/

Mayo Clinic also has some information on mold allergy diagnosis and treatment that may be helpful
— https://www.mayoclinic.org/diseases-conditions/mold-allergy/diagnosis-treatment/drc-20351525

Also found some information from the on urine testing validity that may provide some information for you.

Notes from the Field: Use of Unvalidated Urine Mycotoxin Tests for the Clinical Diagnosis of Illness — United States, 2014 — https://www.cdc.gov/mmwr/preview/mmwrhtml/mm6406a7.htm

Have you discussed if the doctor has any recommendations to help with your symptoms?

@johnbishop yes I’ve taken the urine test and it’s come back positive.
Besides myself, my mother is currently in the hospital and they won’t test her for anything I’ve begged and have tried to see if there is a blood test to ask for specifically to test her. Or how to ask to see if either of us have the HLA-DR gene. Both of our recent urine scans at the hospital had our leukocytes Estrace at 500.
All of her doctors, most of mine, and my husband all think I’m crazy about the mold.
My new psychiatrist and her team have put me on charcoal and Flagyl and I’m meeting with them on Friday to go over some other things that were screened for that is wrong with me.
My mother is being released from the hospital tomorrow and she supposedly has early onset dementia but I’m certain we both have mycotoxins have caused our pain and issues for possible decades. My mother has rapidly gone down hill in the past 3 years and is doing much better the last two weeks at the hospital.
I just find all of this mycotoxins interesting when I talked to the Mayo Clinic this morning and they said they don’t treat anyone for mold. I just want the BEST course of action to take, confirm for both my mom and I and to see if what is happening in my head isn’t going to last forever. I can hardly think straight and my head feels fried all day long.

At this point, I would seek the help of a Naturopath AND have my home inspected by specialists to see if I am being exposed to mold daily.

I’ve contacted many naturopaths and currently my primary doctor who is a MD and functional medicine then my psychiatrist and her team. Both have different approaches to how to treat which is infuriating.
I’ve reached out to some of the doctors on Shoemaker’s approved list on his website.
The one doctor I found that has great reviews wants $6-8k up front and my husband thinks it’s a scam. I just wanted a consult before I agree to thousands.