I was recently diagnosed with a mycotoxin illness. i have extremely high levels of ochratoxin in my urine. Ochratoxin is toxin produced by certain types of mold. I am learning that 24% of the population genetically are unable to tag and produce antigens to mold toxins. I have just been tested for those genes specifically HLA DR1/3/4/5, DQ. I am homozygous on several IG snips like IL5. I had terrible CMV as a teenager. Right now the mold illness has suppressed my immune system so that my EBV titer is super elevated as is my candida titer. I also tested for toxic levels of lead and strontium. I got all of this testing done when I went to a great functional med doctor for my unremitting allergy symptoms…sneezing, congestion, my eyes burn, itch and water constantly, night sweat, morning fatigue, poor sleep. I am so grateful she went looking for an answer! Almost finished my second month of detox protocol. Still symptomatic but looking to feeling better in the next few months. Tested our home which was negative but we have a small cabin that tested very positive for mold. This has been quite a ride!
Hi Hillary, I was diagnosed with mold disease, aka: Chronic Inflammatory Response Syndrome in 2012. The condition is due to exposure to molds, but there are other variants of toxins that cause it as well. Dr. Ritchie Shoemaker discovered the condition and treatment. You might look into it as there are many symptoms. Initially it was called Chronic Fatigue syndrome. To learn more about it, you can go to the website: SurvivingMold.com
and it is full of good information.
One thing you might do is take the VCS test… online. It is a visual acuity test and gives you a good idea if you have CIRS or not. There is information on the website about it. It is free I believe. I had to get rid of all mold infested items such as couches, beds, etc…and we had to move out of our home, which was too moldy. My work was worse. I have been getting gradually better over the years by staying away from mold toxins and following his treatment protocol. Good luck with it and if you have questions I will be glad to help. Larry Tyree
Thanks for replying Larry! I have been on the survivingmold.com website. I have taken the VCS test 3 times and failed it. My doctor here (a great functional med doctor) has me taking it every three weeks to see how my detox is working. I wasn’t aware if you are diagnosed with mycotoxin illness that automatically give you a CIRS diagnosis. I checked my C4a and it was within normal limits. I have watched a bunch of youtubes with Dr. Jill Carnahan. Are you familiar with her? She seems very knowledgable and even-handed in her approach. I also read a great article http://www.gordonmedical.com/unravelling-complex-chronic-illness/mold-and-mycotoxins-often-overlooked-factors-in-chronic-lyme-disease/.
We are in the process of getting bids to have the mold in our cabin remediated. I am waiting on the results of the genetic test. I don’t want to get too flipped out if I have the SNP that makes me more vulnerable to mycotoxins but I figure it is good info to have. What we some of your most successful strategies? I appreciate you reaching out. Hillary
I’ve seen many versions of detox protocols for mold illness. Could you share the protocol that you are using?
Thanks. Juan Carlos Bouvier
I had some serious issues until was I finally able to get all of the molds out of my home. I used an Alpine living air Ionizer to help clean the air. I know you can buy them on eBay and I am sure you can buy them elsewhere. I had to have three sinus surgeries because of all the infections that I had over the years.
I hope you are able to heal, I still have issues but they are so much better since the mold is out of my house.
Hi Juan Carlos: I am sorry I missed this comment. I am using a ‘detox box’ from QuickSilver Scientific. It is basically a strong binder, liposomkl glutathione, liposomkl vitamin C and EDTA because I also have heavy metals. I knew I wasn’t feeling up to par but this has rocked my world. I had no idea but finding out I have these issues has made so much sense of my symptoms. I am trying to focus on the fact that better health is down the road. My doctor is not a fan of the cholestyramine protocol you will see on Shoemaker’s website. She has treated quite a few mold patientsand she says it is hard to tolerate. I think she feels like your body doesn’t need any more challenges to cope with than it has with the mold. I am happy to share anything I can. Hillary
as an update my HLA test came back showing I have the 4-3-53 which means multi susceptibility to biotoxins and then I also have 17-2-52A which is susceptibility to mold specifically. A double whammy. I think understanding where and who we are genetically is pretty vital especially when it comes to health issues. Here in Austin we have a doctor, Kendal Stewart MD who is doing amazing research and work with folks developing treatment protocols that are informed by genetic testing results. I see this, or at least hope, this will be the future of medicine.
My advice after almost dying—literally—from mold sickness after two years of “minor” mold exposure is to GET OUT. I had remediation which included gutting the entire house to the studs, ripping the roof off, and regrading the lot and replacing exterior and interior drainage systems. I’m a structural engineer and restoration architect and believe me, after almost $2 MILLION spent on a 3000sq ft house, purchased for 210K, I wish I had paid off the small remaining balance on the mortgage and torn it down. My lungs are permanently damaged, I need a liver replacement but the mold illness trigger a rare porphyria (promethease doesn’t identify any porphyrias btw, but they’re in 23andMe! Just look) which led to hyponatremia/encephalopathy and having hyponatremia even once is a contraindication for liver transplant. I’m on 5L of oxygen 24/7, have had two rare cancers, and have an inoperable pituitary tumor. The house is worthless and I only survived because I left in a 911 ambulance and was convulsing for five days.
Don’t dream that an ionizer or air purifiers can save your house or YOU. The mycotoxins are GASES. Don’t look at anything genetic or labs other than the CYPs that detox aflatoxins. Aflatoxins damage mitochondrial DNA. A Mayo immunologist held up my Genetic Genie report (in 2013) and said, “this told me more than those 400 tubes of blood. Find the mold, then move somewhere else.” I look like I’m 70. Only eight years ago, people thought I was 40. I was 50 then. I hired my own contacts—the BEST. One of them said, “I know you like this house, but do you have $300,000 to spend on it?” If ONLY it had been only 300K. Like I said, that money spigot can’t be turned off where mold is involved.
Doctors will think both you and your doctor are crazy. The doctor who diagnosed me, LOST HIS LICENSE. People talk about Dr. Shoemaker here, but he stopped practicing. Why? The state of Maryland hounded him at the request of the medical establishment. Save YOURSELF. Walk away from anyplace with mold, because otherwise, you’ll be rolled out.