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Has Anyone with ALS or ALS-like Symptoms Tried Cholestyramine or Mold Detox?
Hi everyone, I’m starting this thread to explore whether anyone here—diagnosed with ALS or ALS-like symptoms—has experience with mold illness or environmental toxicity.
I’ve been diagnosed (or supporting someone diagnosed) with ALS, and after learning about how mycotoxins, chronic inflammation, and mitochondrial damage can mimic or accelerate ALS and ALS-like symptoms, I started looking into detox protocols.
One tool that keeps coming up is Cholestyramine, a bile binder used to remove toxins from the body. It’s been used in mold illness (CIRS) and some people with neurological symptoms (including ALS) report feeling better with it.
I recently came across a compelling article titled“Mycotoxins Causing Amyotrophic Lateral Sclerosis” published in Medical Hypotheses (2021, ScienceDirect), which found laboratory evidence of toxic exposure—including immune suppression and mitochondrial dysfunction—in every ALS patient studied. The author suggests that mycotoxins from fungal colonization may play a central role in ALS pathology, and that treatment with antifungals corrected key lab findings. (Note: Full article may require access, but the abstract is available online.)
For context, I was exposed to environmental toxins during military service, including chronic damp conditions, poorly ventilated barracks, mold-prone buildings, and possible chemical exposure from nearby industrial zones. Many people aren’t aware that mycotoxins can also be inhaled from hidden sources like HVAC systems, old carpets, and water-damaged structures.
I know this isn’t a cure, but I’m wondering if anyone has tried:
- Cholestyramine (prescription or compounded)
- Glutathione or NAC
- Mold testing (urine mycotoxins, VCS test)
- Any detox/mitochondrial protocol that helped slow or stabilize symptoms?
- Please share your experiences—positive, negative, or anything in between. I believe there’s more to this than we’ve been told, and I want to learn from others walking this road.
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1 Reply
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Hi RZ! We have experience with this. My husband was diagnosed with ALS in August of 2023 with symptoms of left leg weakness, left foot drop, frequent falls, and fatigue. We found a functional doctor in March of 2024, who ordered a urine mycotoxin test and a tickborne panel with Vibrant Wellness. He tested positive for 7 kinds of Borrelia, babesia, and other viruses as well as 3 kinds of mycotoxins. The doctor said he definitely thought all of these viruses and toxins were “adding to his burden and preventing him from getting well. We started detoxing immediately. He takes liposomal glutathione, herbals from Dr. Rawl’s herbal immune boosters, methylene blue, rifampin, as well as Zeolite binders (cycled). We did a dust test on our house and it tested at the highest level for mold. We don’t have any leaks and no carpet. We have since had both central ac units along with all ducts changed and he is near a medical grade Austin air filter at all times in the house. He has not had any further progression since the spring of 2024. No recovery of function as of yet, but no progression. 💪🏻 The ALS clinic neurologist now says “clinically more probable PLS”. We have retested the mycotoxin urine test and it showed much lower levels of the previous molds. 🙌🏼 But we still have a ways to go. We also found out in the fall of 2024 that his A1c was out of control, so he is also on Mounjaro and a low carb diet and has lost 30 pounds. He was never in the military. He was an aviation mechanic (possibly exposed to different types of chemicals) before this and under a lot of stress. I hope this helps you. I can share my email in a pm if you would like any other specifics. 🙏🏻 Heather B.
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