MOLD ILLNESS EDUCATION
Updated: Oct 18
Mold exposure is something I believe is essential to address in order to heal. Here is what the newest information from the mold doctors I trust says, in simple terms.
For support, I recommend one group that focuses on recovery, since I feel some groups focus more on fear:
Looking for things that may help? My Mold Possible Solutions post is here:
A quick-view graphic with the key points is at the bottom of this post.
WHAT MOLD TOXICITY IS
- Some molds make toxins called mycotoxins. There are many types, like ochratoxin, aflatoxin and gliotoxin.
- Dr. Jill Crista explains that each type acts a little differently. For example, aflatoxin can be hard on the liver and ochratoxin on the kidneys.
- Mycotoxins are fat-soluble, so they can build up in the body's fat stores.
- Wondering how mold illness and CIRS are different? I explain it simply in my CIRS post:
HOW MOLD AND LYME CONNECT
- Dr. Marty Ross shares that mold toxin illness can look just like Lyme, because the same inflammation signals (cytokines) drive most of the symptoms of both.
- Dr. Crista explains that mold toxins can weaken the immune system and help reactivate infections like Lyme.
- Dr. Tania Dempsey often sees mold become the "final straw" in people whose immune system is already struggling from tick-borne infections. She explains it may reactivate hidden infections like Lyme or Bartonella.
- She also notes that yeast or fungus growing inside the body can make mycotoxins too, so the source isn't always your home.
- Dr. Neil Nathan sees mast cell issues (MCAS) in most of his chronic patients. Their symptoms overlap with mold and Lyme, because inflammation drives all three.
- He also explains that chronic illness can keep the brain's limbic system stuck in danger mode. This can cause sensitivities to light, sound, smells, chemicals and foods, along with anxiety and mood swings.
- Mold can also play a part in histamine issues. More in my Histamine Intolerance post:
TESTING
URINE MYCOTOXIN TEST
- Dr. Ross and Dr. Nathan both call the urine mycotoxin test the direct way to see which mold toxins are in your body.
- Dr. Dempsey notes that a negative test doesn't rule out mold.
- Dr. Ross explains that very sick people may not release toxins into their urine, which can give a false negative. He suggests a sauna or a very hot bath the night before the test.
- Dr. Nathan has shared stopping binders 3 days before collecting urine.
OTHER TESTS
- Inflammation markers like C4a and TGF-beta 1 are indirect tests. Dr. Ross notes they can also be off from tick-borne infections, so they don't prove mold. Learn more in my CIRS post:
- More on these tests:
LABS THE MOLD DOCTORS USE
- RealTime Laboratories urine mycotoxin test: Dr. Nathan, Dr. Ross and Dr. Dempsey all favor it.
- Great Plains Laboratory MycoTOX: Dr. Nathan finds it best for ochratoxin, mycophenolic acid and citrinin.
- Mosaic organic acids test (OAT): Dr. Jill Carnahan says it can hint at mold living in the body. A negative result doesn't rule it out.
- Microbiology DX nasal swab: Dr. Dempsey uses it to check the sinuses.
TESTING YOUR HOME
- Home tests Dr. Nathan and Dr. Crista have shared include ERMI, HERTSMI-2, IEP and mold plates.
- When I moved, I used ERMI testing and a trusted mold inspector who didn't also sell a service, so I could get unbiased reports.
MOLD LIVING IN THE BODY
- Dr. Nathan finds that most of his chronic patients have mold living (colonized) in the sinuses or gut. Dr. Jill Carnahan estimates about 80% of her complex patients do.
WHICH TO TREAT FIRST: MOLD OR LYME?
- Dr. Crista has shared treating the mold first, then the Lyme or Bartonella later.
- Dr. Nathan says to start with mold if it explains most of the symptoms. He calms the limbic system, vagus nerve and mast cells first in sensitive people.
- Dr. Ross may try binders 6 to 9 months into tick-borne treatment if someone is not improving.
- Dr. Nathan has shared that recovery often takes about 6 weeks to 3 months when mold isn't living in the body, and a year or more when it is.
- Every person is different, so work with your doctor on your own plan. More here:
WORDS OF HOPE
Dr. Nathan says a patient can't heal if they don't feel safe. Be gentle with yourself. Healing from mold can be done!
WATCH
Dr. Neil Nathan on mold toxicity in Lyme patients, LymeLight Foundation webinar (February 2025):
ALL MOLD AND CIRS POSTS
Mold Directory:
Mold - Possible Solutions:
Steps to Overcome Mold:
Mold and Lyme Treatment Order:
CIRS and Related Mold Issues:
Find a Mold Literate Doctor:
EC3 Micro Balance for Mold:
Binders:
Cholestyramine (CSM):
MMP-9:
NeuroQuant MRI:
SOURCES
Bay Area Lyme Foundation, The Lyme-Mold Connection: An Incredible Guide to Healing, with Dr. Jill Crista (2025):
Dr. Neil Nathan with Dr. Jill Carnahan, Toxic Mold Revisited: Mold and the Highly Sensitive Patient (2026)
Dr. Marty Ross, Mold Toxin Illness in Tick-Borne Diseases (updated 2026)
Dr. Tania Dempsey, Mold/Mycotoxin Illness, Mast Cell Matters (2024)
Dr. Tania Dempsey with Dr. Neil Nathan, Mold and MCAS, Mast Cell Matters (2024)
Dr. Neil Nathan and Dr. Jill Crista, A Comprehensive and Practical Review of Mold Toxicity (2021)
Dr. Jill Crista, The Term Mycotoxins Covers Many Types of Mold Toxins
Disclaimer: Rise Above Lyme makes no claims about any possible benefit of using any product mentioned within this site. Always consult with your doctor before adding anything. The information shared is based on personal experience, years of accumulated researched resources from Lyme Literate doctors and polls conducted within Lyme groups from actual patient experience using these solution ideas.
Comments