I’ve been diving deep into all things CIRS and mold illness since writing this blog. A lot of what I wrote in this blog, I no longer agree with. I’ll add my updated thoughts/reflections in italics so you can see where and why my thoughts have changed.
Research on CIRS and mold illness changes rapidly. Don’t ever get too comfortable with what you think you know. And always keep learning!
Did you feel worse after starting a mold detox protocol?
If you did, you’re not alone. The vast majority of my patients felt worse once they started a mold toxicity treatment protocol. It’s not your fault. The prescribed treatment was wrong.
Fortunately, there have been new developments in the mold detox protocol. Natural treatments for mold toxicity should actually make you better. Not worse.
A lot of natural treatments for toxic mold have not stood up to the rigors of scientific study. I’d go so far as to say that the majority are based solely on a practitioner’s experience. While practitioner experience is a tenant of Evidence-Based Medicine, it should not be the sole or guiding principle.
As a patient, you need to know how your practitioner is making his/her clinical decisions. Ask for research. Ask for evidence. It’s your right as a patient to ensure the proposed treatment protocol aligns with you.
Why the old mold toxicity treatment protocol doesn’t work
Before Dr. Ritchie Shoemaker, we knew very little about toxic mold. Today, we know a little bit about toxic mold. The majority of that knowledge is based upon the incredible body of work done by Dr. Shoemaker.
Thanks to Dr. Shoemaker’s groundbreaking research on mold illness and Chronic Inflammatory Response Syndrome, mold toxicity treatment protocols were devised and patients with seemingly incurable illnesses got better. I detail the steps of the Shoemaker protocol in this post.
The Shoemaker protocol worked wonders for thousands of patients. But the next generation of patients experiencing toxic mold illness and/or Chronic Inflammatory Response Syndrome respond to treatment much differently. The new generation of mold illness patients seems sicker. Their symptoms are more severe. And they don’t respond well to conventional treatment.
If you tried Cholestyramine or Welchol for mold symptoms but felt so much worse, you’re not alone. The vast majority of my patients do not respond well to either Cholestyramine or Welchol.
Dr. Shoemaker continues to inspire me. He has never stopped researching. Even today he continues to publish more data on CIRS.
I now suspect the reason a lot of CIRS patients didn’t get better using CSM and welchol has little to do with the medications and far more to do with ongoing exposure. Recent research suggests that actinomycetes bacteria are the most common cause of CIRS (not mold!). (source)
Treatment protocols for actino-bacteria are slightly different than mold. If you didn’t get better following the Shoemaker protocol, it may be because you were treated for mold when actinomycetes were maintaining your illness.
I have found the conventional treatment for toxic mold no longer improves my patient’s health.
Instead, it tends to make things worse. Fortunately, the next generation of mold-literate practitioners has advanced Dr. Shoemaker’s protocols. There are now new labs to test for toxic mold and new protocols to help even the most sensitive patients heal from toxic mold and Chronic Inflammatory Response Syndrome.
Again, see my above writing on actino-bacteria – the number one cause of CIRS.
Diagnosing toxic mold – the old way vs the new way
In addition to treatment outlines, the Shoemaker mold protocol also outlined specific lab tests that indicate toxic mold or Chronic Inflammatory Response Syndrome. The problem with these labs was that they were complicated and expensive.
Today, we don’t need to rely on these tests. Testing for toxic mold these days is as easy as peeing into a cup. The lab analyzes your urine for toxic molds and voila, an easy, accurate way to diagnose toxic mold. Laboratories like The Great Plains Lab and/or Realtime Laboratories offer comprehensive urine testing for toxic mold species.
Just like testing has made better, mold sickness treatments have also improved.
I was stoked when urinary mycotoxin testing came to market – finally, an easy way to diagnose mold illness and CIRS. I was SO wrong.
Looking back, urinary mycotoxin testing has been one of the worst “advancements” in mold illness. Practitioners are jumping on the CIRS bandwagon claiming they can treat the illness without actually knowing the data. Shamefully, I was one of them.
Fortunately, Dr. Shoemaker has done due diligence in trying to put an end to urinary mycotoxin testing. You can read his scathing report on this method of testing here. I’ll summarize it for you below:
21 studies covering 2756 controls from children to adults from North and South America, Europe, Asia and Africa. One study showed positive urine mycotoxins of 60% of 15 patients; one showed 66% of 19 patients with the rest showing 80-100% positive. (source)
Almost everyone tests positive for mycotoxins on urinary assays.
Because mycotoxins are everywhere – especially in the food we eat.
If you drink apple juice, you’ll test high for aspergillus mold species because apple juice is ridiculously high in Patulin – a toxin created by aspergillus mold species.
The key takeaway: Food molds don’t cause CIRS. Urinary mycotoxin testing reveals levels of food-based molds. It has zero clinical significance in CIRS or a water-damaged building. If you’ve been diagnosed with CIRS or mold illness using urinary mycotoxins, you’re going to need to go through the whole diagnostic procedure once again.
New and natural treatments for toxic mold
Today’s mold patients are sicker and more sensitive. Throwing high doses of Cholestyramine or Welchol at them tends to only make things worse. As practitioners, we need to move slower and more gently.
As a patient, you need to inform your practitioner about all the side effects you’re experiencing from treatment. Those side effects or symptoms are not in your head. They’re real. If you’re experiencing them, you need to move slower. Decrease your dose or the type of medication/supplements you’re using.
Treating toxic mold is a marathon. Not a sprint. Go slow.
That includes starting slow. Increase your dose only when your symptoms are tolerable. If you find yourself reacting to just about everything, start with Saccharomyces Boulardii – a beneficial yeast species that has been shown to help improve your body’s ability to detox molds.
Below, I list some of the newer and natural treatments. These treatments are far more gentle than Welchol or Cholestyramine for mold.
I agree with a lot of what I wrote here. Going slow and always moving at the pace of your patient is good practice. Another helpful element can be starting high-dose fish oils one week before starting any binders. These seems to help lessen adverse reactions to binders.
In many natural health circles, glutathione is known as the master antioxidant. Glutathione is most certainly an antioxidant – whether it is better than the other antioxidants, I’m not sure. Your body is capable of creating its own glutathione from amino acids easily obtained in your diet.
When practitioners suspect you have mold illness, glutathione should be one of their first recommendations. And for good reason – glutathione is a wizard at helping your body rid itself of mold toxins.
I recommend starting with glutathione for mold detox treatment plans. It’s typically well-tolerated with minimal side effects.
While glutathione may help your immune system in the battle against molds and their mycotoxins, it won’t solve the problem. Remember, CIRS and mold illness occurs in people with a specific gene. This gene creates a chronic state of inflammation and no amount of glutathione is going to stop this process.
But glutathione is the perfect supplement to start your detoxification protocol. Use glutathione as a barometer to make an educated guess about how well you’ll tolerate other the other natural supplements I list below.
Since glutathione is an antioxidant, it can degrade quickly. To avoid this, purchase your glutathione supplement in a liposomal form. Liposomal simply means that the glutathione is bound to fat. This prevents degradation of the supplement and increases absorption rates.
Be sure you opt for capsules. Glutathione tastes awful.
I don’t have any issue with glutathione use. I no longer use it in my own practice. But many patients have reported feeling better while taking it or N-acetyl Cystine (NAC – a precursor to glutathione). Dr. Shoemaker doesn’t think it to be a necessary treatment step. Dr. Heyman uses it as an adjunct to the Shoemaker protocol.
Activated charcoal has been used to treat poisonings for more than 100 years. Because of this the World Health Organization lists activated charcoal as one of the essential medicines.
Activated charcoal treats poisonings by binding with the toxin/poison and safely removing it from the body. This amazing binding ability is what has lead many practitioners to suspect that activated charcoal to be ideally suited to treating mold.
And it might be. But there’s just not a lot of research confirming this yet.
However, I have personally used it with close to one hundred patients. I monitor progress by performing VCS testing every two weeks. In nearly all of my patients, their VCS test scores have improved after using activated charcoal.
Activated charcoal has a very safe history of use. You can comfortably try a course of activated charcoal as treatment without worrying about nasty side effects.
If you find your body just doesn’t tolerate Cholestyramine or Welchol, start with glutathione and activated charcoal for mold detox. This is an excellent first step in binding toxic molds. You can track your progress with the VCS test for mold.
There have not been published, peer-reviewed scientific studies demonstrating the benefit of CSM substitutes. The reason CSM works so well is that its positive charge (+) binds tightly with biotoxins, which are negatively (-) charged.
From the limited findings available it’s been shown that substitutes such as charcoal, chitosan and clay have the same (-) charge as the biotoxins, therefore a strong binding bond is substantially less effective or not likely.
Okra and beets have a similar ionic structure and charge to CSM and welchol. There is potential here that they may play a role in binders for the ultra-sensitive. (source) At the time of this writing, we don’t have any studies supporting this hypothesis.
The use of saunas and sweating has been used for many years as a means to rid the body of toxins. Sauna therapy has shown benefit for the treatment of high blood pressure, congestive heart failure, post-heart attack, chronic obstructive pulmonary disease (COPD), chronic pain, rheumatologic disease, chronic fatigue, and addictions.
A mycotoxin found in water-damaged buildings has been found in human sweat. However there have not been any other studies to analyze molds and their mycotoxins in human sweat. Much like activated charcoal, there are a lot of anecdotal reports that saunas improve the symptoms of mold illness. But there’s just not any strong research to support this claim.
With that said, I think the use of saunas provides other well-documented benefits. Other toxins like bisphenol A and heavy metals have been shown to be excreted through sweat. It is likely that sauna therapy will reduce the overall toxic burden in your body. Whether that includes molds and their mycotoxins remains to be seen.
I recommend you combine sauna use with some form of a binding supplement. Should sweating mobilize toxic molds, you’re going to want to ensure your body has a means of binding them. Glutathione and activated charcoal will help with this process. Take either glutathione or activated charcoal 30 minutes before entering the sauna and again after your sauna session is completed.
Track your progress via the VCS test for mold. This will let you know if your sauna sessions are helping rid your body of toxic mold.
I love saunas. I use one regularly. But I’ve not seen any CIRS patients improve solely because of a sauna. The only thing I’ve seen help CIRS is the Shoemaker protocol.
Sauna can be used as an adjunct therapy to the Shoemaker Protocol. But go slow. Saunas trigger a stress response – activating your HPA axis in a similar manner to exercise. Many CIRS patients have complete intolerance to exercise. The same intolerance can occur in sauna sessions.
Charcoal aside, there are many other natural supplements you can use to bind toxic mold. Remember, those of you with the moldy genes won’t be able to expel mold and their associated mycotoxins on your own. You’ll require the help of some sort of binder to do this. These natural binders replace the need for Cholestyramine or Welchol.
Some of the other natural binders I use in the clinic include:
- Bentonite clay
Use the VCS test to monitor your progress. If one of the binders I mentioned is not making a change, switch it for another. There is most certainly some guesswork required. I suspect each of the natural binders works best with specific types of molds/mycotoxins. If you’re not improving, it’s possible that the binder you’ve chosen is not well suited to the type of mold you have been exposed to.
As I wrote above, none of these listed binders work on biotoxins.
Probiotics for mold exposure
Specific strains of Lactobacillus probiotics help your body expel toxic mold. These strains include:
Probiotics could be the perfect starting point to help you overcome toxic mold. They will help settle your gut and gastrointestinal symptoms. This will improve your body’s detox abilities. With a healthy gut, you’ll be better able to expel mold toxins.
Saccharomyces Boulardii is a beneficial yeast species. Think of it like a probiotic. But instead of a beneficial bacteria, it’s a beneficial yeast species. It’s also very well tolerated.
One study done on chickens found that it helped the birds remove Ochratoxin A – a common toxic mold.
If you find yourself incredibly sensitive, start with 5 billion units. If that is well-tolerated, increase your dose up to 10 billion units three times per day.
I think beneficial bacteria and yeast species are great. They can help settle one’s gut – and a lot of CIRS patients have gut issues. Just remember that these supplements will only provide symptomatic benefits. The real solution to gut issues in CIRS is improving MSH levels!
The most important point about natural treatment for mold exposure
Avoid adverse reactions.
Do not push through. Do not tough it out. Go slow. Take your time. Find a dose that your body tolerates. Slowly increase from there.
The common assumption in Western society is that there should be some pain or discomfort in treatment. That way you know it’s working. Please please please, let go of this assumption.
Your goal in treating toxic mold is to avoid negative reactions. If you start to experience symptoms, you’ve exceeded your body’s ability to detox. Slow down. Increase your dose only after you’ve tolerated the lower dose for at least one week without symptoms.
If you find that you’re unable to find a low enough dose or that you react to absolutely everything, you may be dealing with a condition known as mast cell activation syndrome. You’ll need to calm your mast cells before continuing treatment on toxic mold.
I’m still in complete agreement with what I’ve written here.
Mast cell activation syndrome and toxic mold
Mast cells are one of the most important types of white blood cells in your body. The basic function of your mast cells is to coordinate your immune system’s response to harmful invaders. Toxic mold is just one of the many potential invaders.
You have the highest concentration of mast cells in the parts of your body that come into the most contact with the outside world: your GI tract, sinuses and respiratory tract, skin, and genitourinary tract. Notice how a lot of the symptoms of toxic mold affect those body systems in particular!
When your mast cells come into contact with mold, they sound the alarm bells. Mast cells commonly release histamine, serotonin, or tryptase in response to toxic mold.
When you start treating toxic mold with binders, you may trigger a response from your mast cells. When this occurs, there is typically an aggravation in your symptoms. This is why so many of you may feel far worse when you start taking cholestyramine.
Mast cell activation syndrome could be preventing you from treating and overcoming toxic mold.
If your mast cells are hyperactive, you’re going to need to quiet them down before treating toxic mold. To do this, start with 500mg of quercitin thirty minutes before your meals. Quercetin has been shown to be even more effective than prescription medication at calming down your mast cells.
If you tolerate 500mg of quercetin, increase your dose up to 2000mg thirty minutes before each meal. Taking quercetin before eating is extremely important. This gives the supplement time to help calm your mast cells.
Once your mast cells are less reactive, you can get back to treating the toxic mold. Just remember to go slowly. Start with a very small dose of natural binders. Ensure there are no adverse or Herxheimer reactions. Only then should you start to increase your dose.
New research is suggesting that mast cell activation may be a symptom of CIRS. Stay tuned for more research on this!
Flourish Clinic specializes in mold sickness and CIRS – learn more!
Ok, now I want to hear from you!
What sort of treatment has helped you overcome toxic mold?
What treatments made your mold symptoms worse? How did you overcome them?
Leave your answers in the comments section below!
Dianne Bailey says
Just started tx for mold toxicity and the shortness of breath, nausea and fatigue makes me want to just give up. The symptoms were bad enough before tx but now they are unbearable. I am very sensitive to meds and many other things. Feeling hopeless!
Mark Volmer says
Did you start with cholestyramine?
I’ve found cholestyramine to be poorly tolerated by the majority of my patients. Before starting treatment, you may need to calm down your mast cells. More info here – https://fatiguetoflourish.com/mast-cell-activation-syndrome-fatigue/
Let me know how it goes!
I’m kind of lost for what to do. I have been suffering with severe respiratory issues for almost 3 years and everything I tried doesn’t seem to work. I am not even sure this is mold but I did take the Realtime labs mold test and it was positive for aspergillus. I don’t have many of the other symptom that lots of CIRS sufferers get, it’s mainly just the respiratory problems, which is mucus and coughing sometimes very severe. I tried using NAC, activated charcoal, G.I. Detox, D-Hist, Para-Shield, I changed my diet, etc. These seemed to make the symptoms milder but still sometimes I can’t bear them, especially when they happen at night.
Mark Volmer says
I’d recommend starting with a VCS eye test to see if a mold-related illness is at play:
Thank you for this article! I discovered I am positive for mycotoxins after taking the Great Plains Test. Would glutathione and sauna alone be enough to detox the mycotoxins? I’ve taken glutathione in the past and have done well on it. I took my first dose (only one pill) of GI detox yesterday and felt fine all day but then had a lot of nausea and overall didn’t feel well in the evening and all night. I still don’t feel 100% today. Could that be a reaction to just a small dose of the GI Detox. I am sensitive to everything, so I possibly have the mast cell issue. What are my best options to heal without feeling horrible?
Mark Volmer says
That depends on your HLA haplotype. Some haplotypes are unable to recognize the toxins and are thus unable to excrete them. Should that be the case, some form of binding agent like cholestyramine or mycobind (https://professional-health-products.com/product/mycobind/) will be required.
Patty Black says
Are these products not available anymore? Thanks
Mark Volmer says
These are still available. Check your local health food store or online retailer.
What would you suggest for those of us with MTHFR?
Mark Volmer says
Mycobind would be my recommendation:
I’m curious what your thoughts are if someone has been detoxing using anti fungals, binders (6 a day), glutathione, along with other gut and immune supporting supplements, and after 4-5 months the glitioxin level that was at 566 is down to 477 when normal is 150 and below, and fusarium has only budged from 23.04 to 23 and they have both mold susceptibility genes. Does this mean the person is not detoxing well or that they’re still somehow being exposed to mold? Or does it just take time? Glyphosate has gone down from 7.79 to 5.20 and BPA has gone down from 18 to 6.
I should also add the person has sibo that they’re going to finally attack now.
Leah Fielding says
I have been diagnosed with CIRS and MCAS and I have just been reacting to everything! Even quercetin and micro dosing antihistamines .. I’m not really sure what else to do.. I’ve been trying saunas, binders and IV glutathione and vitamin C, however, they trigger a flare up, so I go back to focusing on calming the mast cells yet I haven’t been successful in finding something to assist with calming them. Any advice would be amazing, thank you 🙂
Mark Volmer says
I’d recommend low-dose VIP (vasoactive intestinal peptide) therapy. Works wonders for those with hypersensitivities 🙂
Mark Volmer says
I would ask what is this person is using for binders?
What dosage of activated charcoal and for how many days? With or without food?
Jennifer Vanneman says
I tested positive for Ochratoxin A with the Great Plains lab test & positive on the VCS test. I tested positive for autoimmune but nothing specific. My symptoms are strong- muscle tightness /weakness throughout day & nerves tingle & feel like fire through arms & legs off & on. My doctor believes this is mold related & the reason I get reaccuring viruses including Covid. My immune system is always on. I am not vaccinated. She wants me to do the Dr Shoemaker protocol but my body is so sensitive I’d like to start slower.
Can I get rid of Ochratoxin A using natural methods or do I have to use the chlorestramyne?
Mark Volmer says
I’d recommend starting with testing your home and work environment with a HERTSMI-2 test.
An ongoing exposure to mold could be the reason your immune system is extra sensitive.
Troy Pearse says
Great article, thank you.
I am recovering from Long Covid, BCAS and mold exposure. My MCAS kept getting worse and I was very histamine intolerant. I did a 3 week medical fast and afterwards my. MCAS is gone and I finally started recovering from Long Covid! My blood brain barrier is healing and the brain fog is almost gone. Started a mold detox protocol with my Functional Dr including liposomal Glutathione, saccharomyces, NAC, Bitters and G.I. Detox, which is going OK so far–occasional GI symptoms. Using VCS to track progress and will rerun urine tests in 3 -6 months.
Have read some recommend the glutathione first and GI Detox 30 min later, but others recommend getting the binder in place first. Any thoughts on which is better?
What is your opinion on dietary restrictions during detox? I’ve read a lot about needing to do the low amylose/candida diet
Mark Volmer says
Low amylose diets can be incredibly beneficial – when done at a specific time in treatment 🙂
June Vrh says
I started cholestyramine made symptoms worse. I was bitten by a tick bulls eye rash 5 yrs ago. Even though I was treated for lyme i have mobility issues only on left side which incidentally was the leg that was bitten. So my symptoms are extreme fatigue and dragging left leg which got worse with cholestyramine. Got so weak dropped to knees and crawled. I tested pos. for mycotoxins that is why I’m taking cholestyramine. Took methylene blue (for lyme) b4 that. Have taken zeolite, charcoal without any problem, chorella made me weak. Would love to hear what your thoughts are.
Mark Volmer says
Have you tried taking high-dose fish oil before starting binders? This often helps ameliorate one’s reaction.
Have you heard anything about kale? Studies showed it was in third place for binding bile to okra and beets. I’m sensitive to the fructans in okra and beets. I’ve been taking kale for a couple weeks now. Left eye is still not passing the test. How long should I be taking a binder to expect results? What are your thoughts on kale powder? Would it have the same positive charge as the other two vegetables?
Mark Volmer says
I saw the study. Haven’t used it in my practice. I suspect it would be highly highly unlikely to be able to eat enough kale to get enough binding capacity to ensure the removal of biotoxins.