Many of us believe that mold exposure was a trigger for our ME/CFS. Although at my initial bout with ME/CFS I didn’t experience psychiatric symptoms, it is common to have anxiety and neurotransmitter imbalances with the brain fog, especially with people who don’t detox easily and have neuro-inflammatory problems.
My daughter was officially diagnosed with ME/CFS at the Nova Southeastern INIM clinic and was tested for mold toxicity after a thorough medical history. They found 50x the normal positive result for black mold toxins in her body. This seems to have been her ME/CFS trigger. We ended up tracing it back to an old dormitory that had a black mold history. Had we not tested her, she would have continued to get sicker and sicker. This particular mold toxin is used in biological warfare and destroys the nervous, digestive and immune systems along with eventual kidney and liver damage among many other things. If you were to take a drop of this mold toxin – Verrucarin A – and put it on your skin, it would blister. It was recycling through her body wreaking havoc, with no way for her to remove it. As soon as we got the results, she started taking activated charcoal capsules, which bind to the toxin in the intestines and pull it out of her system. She gradually began to get better with this treatment.
Looking back to my first ME/CFS symptoms, I was also in an older dormitory room at the same college! I didn’t know about mold exposures back then, but I do remember at one point trying a barley green supplement that I thought really helped me. As it turns out, barley greens also act as a binder to mold toxins. It’s not as strong as activated charcoal, but who knows, maybe it saved me too!
Here’s an article by Dr Mary Ackerley, who is a Harvard and Johns Hopkins trained psychiatrist with a specialty in environmental illness. She believes that a large percentage of mental and physical health problems are due to environmental exposure.
And here’s a very informative podcast interview of hers about neuro-inflammation and psychiatric disorders related to mold and environmental exposure.
Mold Toxicity Testing
You can be tested for mold toxins through Great Plains Laboratory’s Mycotox urine test. To order a mold toxicity test kit through my third-party channel, go to https://lwmecfs.mymedlab.com/great-plains-tests/gpl-mycotox . (I paid $299 when my doctor ordered for me and this is only $25 more with the convenience of not having to find a doctor with a Great Plains Lab account to order it.) An online doctor will order the laboratory test you choose and they will send it directly to your home with complete instructions and return shipping materials. You will get your results in 16 – 21 days.
Mold Toxicity Treatment
If you find that the test is positive for mold toxicity, the treatment usually involves a binder (something that grabs the toxin in the gut and keeps it from recirculating) such as activated charcoal capsules. Many people also take a glutathione supplement, which is an antioxidant, that helps remove the toxin and tame the oxidative stress in the body. We used Bulletproof Activated Coconut Charcoal and Seeking Health’s Optimal Liposomal Glutathione. Both are sold on Amazon or if you follow the link you can buy the glutathione directly through the Seeking Health site. Finding a doctor that has experience with environmental medicine is helpful in individualizing your own treatment. I believe Dr. Ackerley is also taking patients and if you refer to my physician page those doctors are well versed in treating mold toxicity.
Our Mold Detox Protocol Summarized
If the person is having digestive problems, this needs to be addressed because the mold toxins are removed via the digestive system.
For digestive support and healing:
- Slippery Elm – an inexpensive and mild natural supplement that soothes & heals irritated intestinal lining
- Pro-digestive enzymes – for help with digestion because the normal digestive enzymes may be depleted due to probiota disturbance
- Probiotics (with strains for sensitive gut) – to rebuild intestinal probiotic strains
- Bovine colostrum – this is a bit expensive but VERY helpful in healing the gut. A doctor recommended Sovereign Laboratories to us and we tried their small sample-size first. We found it to be an amazing product and didn’t cause any problems with my daughter’s lactose intolerance. We like the vanilla flavor.
While supporting the digestive system, the mold toxin needs a binder to keep it from being reabsorbed:
- Activated coconut charcoal – 2 capsules 3x daily 2 hrs from other medicines and supplements (there are stronger binders, but we used activated charcoal because it was the safest for the digestive problems and it did remove the toxins when it was taken 3x/daily)
- Liposomal glutathione – 20 minutes after taking the charcoal (or other binder the doctor recommends (liposomal products are absorbed easily and quickly, therefore we only took a few drops at a time of the Seeking Health brand to start and raised that slowly to about 7-10 drops)
Download my instructions for ordering the mold toxicity test here: