Got Fibro & Sensitive to Everything? Part 4: Treating for Mold Toxins
In my previous article in this series, I gave a primer on mold toxins — how they work and why it's so important to remove molds from your environment, particularly for those of you who have fibromyalgia or chronic fatigue syndrome. In this piece I discuss how to treat for mold toxins.
If you test positive for mold toxins (using the urine testing I described in my previous article), you'll have 3 key areas that will need treatment. These are:
- Make sure there's no mold in your environment.
- Kill the toxin-producing mold in your body.
- Take toxin binders.
Let's go through each of these.
1. Make Sure There's No Mold in Your Environment
If it's still present, you must get the toxin-producing mold out of your environment. This includes your home, your place of work, and even your automobile's heating and AC system. Unfortunately this is often difficult and expensive, especially since some mold remediation companies can overlook obvious mold problems, while others see it everywhere when it's not even a problem.
One approach you could consider is to do a home "petri dish" mold test that you can get from a company called ImmunoLytics. If the test is positive, you'll need to bring in somebody trained in doing mold remediation to get the mold out of the area indicated by the test. For more information on this, I refer you to the book Toxic. You might also find guidance by contacting the support team at the ImmunoLytics website.
Unfortunately for many people already financially devastated by this illness, paying the high cost of remediation may simply not be an option. If this is your situation, you may need to consider other alternatives. For example:
- If your illness began before you were in your current home, there's a good probability that you left the mold behind when you left that residence, and it's just that you're still carrying the toxin-producing molds in your body. If this is you, and there's no obvious mold issue in your current home, an argument could be made for simply treating your illness and seeing if your mold toxin levels improve after 6-9 months using the binders I discuss later in this article.
- If you're working outside your home, and you haven't moved to a different office building since your illness began, the mold source might be in your work environment. If so, ask your supervisor if you can work from home or in a different building.
- If you're renting, consider moving to a different building.
2. Kill the Toxin-Producing Mold in Your Body
For this, I treat by giving at least 2-3 months of the prescription fluconazole (Diflucan) or itraconazole (Sporanox) 200 mg daily. Most of the people I treat will have already been on this before exploring mycotoxins. But if you aren't able to tolerate these meds (because the antifungal's severely flare symptoms in you called a Herxheimer reaction), then Dr. Neil Nathan, the author of Toxic who I discussed in my previous article, finds that having people take binders (explained further below) for several months can stabilize the toxin levels. After that, you can try taking the medications again — but very slowly.
I also recommend using Argentyn 23 Colloidal Silver Nose Spray (made by Natural Immunogenics Corp.) and a compounded prescription for nose sprays for at least 6 months. There is also a good argument for using both of them long term. This will kill any mold in your sinuses, which is the main area where they produce toxins. Use 1-2 sprays of each in both nostrils 2-3 times daily. The 2 prescription compounded nose sprays are:
- Sinusitis Nose Spray from ITC Pharmacy (303-663-4224). Get the one that includes bismuth and 0.06% amphotericin B (30 cc). Your doctor can call in a prescription to ITC pharmacy for "sinusitis nose spray with bismuth and amphotericin." The pharmacy will know what to supply. If the cost is prohibitive, you can get it without the Amphotericin B.
- For long-term use after the 6 months (or even after 2 months to lower costs), ask your local compounding pharmacist to make a 1% itraconazole nose spray. Some people prefer to keep costs down by making their own. This can be done by getting five 200 mg capsules of itraconazole from a compounding pharmacy, and adding this to a 1 and ½ ounce (45 mL) nose spray bottle of saline (available for about $2 at CVS pharmacies). You can use this nose spray long term, 1 spray in each nostril twice a day, for prevention.
The prescription Sinusitis Nose Spray will also kill problematic bacteria called MARCoNS (Multiple Antibiotic-Resistant Coagulase Negative Staphylococci), which can aggravate your illness. I don't bother doing nasal swab testing for these bacteria, as I simply rely on the nose sprays to do their job.
3. Take Toxin Binders
Binders are substances you can eat that help remove toxins from your body. They do this by physically binding to toxins in your intestines so that they pass out of your body during urination and bowel movements. Take the binders listed below about ½ hour before you eat. Doing so will position them like a catcher's mitt where your bile is produced after you eat. They'll soak up the toxins and pull them out in your stool. Though you should see improvement fairly quickly, it usually takes about 18 months for the toxins to get low enough that you begin to feel much better.
In the beginning, as you first start to pull the toxins out of your system, you may actually feel worse. This happens because the toxins are being pulled out faster than your detoxification system can handle them. If this happens to you, do not try to play macho and tough it out, as this will only set back your recovery! Instead, ease back your dose size to an amount where you are no longer feeling worse. You'll be able to slowly increase the dose comfortably over time. During the first 6-9 months, urine mold toxin levels may actually go up with treatment, as dead mold and fat cells release toxins for elimination.
Klaire Labs Interfase Plus can also help kill the yeast and may settle down the flaring of symptoms during detoxification (take 1 capsule twice daily).
Four binders your holistic physician should consider:
- Cholestyramine (Questran, by prescription). Get the sugar-free version. If you can't tolerate the additives, you can have it made by a compounding pharmacy, though this is more expensive and won't be covered by your health insurance. Start by taking 1/8 to 1/16 teaspoon every other day a half hour before a meal. Gradually increase the dose as you find comfortable to 1 scoop (1 and 2/3 teaspoons, or 4 grams) 2-4 times a day. Don't be surprised or concerned if you can't comfortably exceed 2 teaspoons a day. Some people get well with even a 16th of a teaspoon every 2-3 days. Colesevelam (Welchol) works the same way, with the usual dosage being 2 capsules (625 milligrams each) 3 times a day. Constipation is the main side effect, so increase your magnesium and vitamin C intake to compensate.
- Bentonite capsules 500 mg 1-2 daily (by Premier Labs). If poorly tolerated, you can switch to Yerba Prima Great Plains Liquid Bentonite Clay. Start with 1/16-1/8 teaspoon taken once daily and slowly work up to 1 teaspoon as you find comfortable.
- Activated charcoal capsules 280 mg (avoid tablets and powders as they can be messy) 1-3 capsules a day (from Integrative Therapeutics).
- Chlorella capsules (not the pellets) 1-3 capsules a day (from Body Bio).
- Saccharomyces boulardii capsule 3-5 billion units. Begin by taking 1 capsule each day with a meal, and gradually increase to 3 times a day. This also inhibits growth of other unhealthy bacteria and yeast.
Dr. Nathan suggests beginning with the Saccharomyces first, as it is usually tolerated better by most people. When you're comfortable with this, he recommends adding in the bentonite clay, starting with 1 capsule a day.
Some people respond within 6 months, while others take as long as 1-2 years to see improvement. Some even take as long as 3-5 years to get well. In cases like these it's especially worthwhile to consider urine testing after 6-9 months, so that you can reassure yourself that the mold toxin levels are indeed coming down. They usually have to come down into the normal range before you start feeling better.
For those of you who want to choose which toxin binders to use based on targeting the specific mold toxins that showed up in your test results, Dr. Joseph Brewer (a leading Kansas City, Missouri CFS and infectious disease specialist) and Dr. Nathan offer the following guidance:
- Ochratoxins appear to be bound best by cholestyramine and activated charcoal.
- Aflatoxins and sterigmatocystin are bound by activated charcoal and bentonite clay.
- Trichothecenes (including roridin E and verrucarin A) are bound by activated charcoal. Chlorella and bentonite clay may also be helpful.
- Gliotoxins are bound by bentonite clay, Saccharomyces boulardii (a probiotic yeast), and N-acetyl cysteine (NAC) 500 mg twice daily .
- Saccharomyces boulardii capsule, 8 to 10 billion units, with one meal per day, working up to three times a day is very gentle and can help with most cases.
What Is Going on in Mold Toxin Illness?
For those of you who are very, very technically oriented, below is a play-by-play description of what mold toxins do to your body. Those of you who aren't that technically interested may want to skip this section.
The most common and problematic toxin-producing molds are the black mold Stachybotrys, Aspergillus, Penicillium, Fusarium, Chaetomium, Alternaria and Wallemia. These trigger the Cell Danger Response (CDR), which causes your immune system to go into overdrive. This can trigger not only increased sensitivities, but eventually immune exhaustion.
These immune chemicals, called cytokines, block your body's leptin receptors, causing leptin resistance. Leptin is the hormone that suppresses your appetite and tells you that you're full after a meal. This is part of what contributes to the average 32 pound weight gain seen in fibromyalgia. The toxins also prevent the hypothalamus from making a-MSH (alpha-Melanocyte-stimulating hormone) and VIP (vasoactive intestinal polypeptide). These are critical for regulating your immune, brain and hormonal systems.
Mold toxins are one of the causes of hypothalamic dysfunction that I've written about before.
Meanwhile, the immune system is unable to shut off. This can be demonstrated by measuring the cytokine C4a. The chronic immune activation causes inadequate oxygen flow to your tissues. This stimulates your body to increase the production of VEGF to stimulate new blood vessel formation.
Over time, the drop in a-MSH and the immune exhaustion leaves you vulnerable to infections such as the MARCoNS I discussed earlier. This nasal infection can make exotoxin A, which can further destroy a-MSH, while making thick layers of biofilm that prevents your immune system and antibiotics from getting to the infections. The EDTA, silver and bismuth in the nose sprays I discussed above melt the biofilms.
A piece of good news? VIP can be measured by a blood test, though the test must be performed at ARUP Laboratories (most local labs can send the test to ARUP). Testing elsewhere is likely to not be reliable. Low VIP levels trigger out-of-control immune activation. Compounding pharmacies can make VIP nose spray, which can sometimes quickly improve symptoms.
Dr. Ritchie Shoemaker, the author of Mold Warriors who I discussed in my previous article, also recommends other tests that are more often covered by insurance and can be done by most labs. My suspicion is that these tests aren't specific to mold, as they show the body's Cell Danger Response to numerous stressors. But they do have two benefits:
- They reveal a number of abnormal blood issues, which is helpful if you have family members or physicians who don't believe anything's wrong with you (probably because you've been getting the wrong tests for your illness).
- Over time, you can see that things are improving physiologically, even before you begin to feel the improvement. And that can be very encouraging.
I should point out that although I endorse these tests, I don't actually use them for people I treat. Not because they aren't effective, but because they don't affect my treatment decisions. BTW, if you have CFS or fibromyalgia, here are what the tests are likely to show:
- Elevated levels of c4a , TGF-beta-1, MMP-9 and leptins.
- Low levels of a-MSH, VIP and VEGF.
For difficult cases, I recommend you consider making an appointment with Dr. Nathan to get direction from him on how to handle your mycotoxin treatment. For most cases, I simply treat it as part of the overall S.H.I.N.E.® protocol. I do treat people worldwide. For information on this you can contact Sarah at Appointments@EndFatigue.com.
As you can see, mycotoxins can be a very complex topic. But it's OK to simply begin with the binders I've discussed, letting these work in the background for 16-24 months to remove the toxins, while you address the rest of your health issues using the S.H.I.N.E.® protocol.
Jacob Teitelbaum, M.D. is one of the world's leading integrative medical authorities on fibromyalgia and chronic fatigue. He is the lead author of eight research studies on their effective treatments, and has published numerous health & wellness books, including the bestseller on fibromyalgia From Fatigued to Fantastic! and The Fatigue and Fibromyalgia Solution. Dr. Teitelbaum is one of the most frequently quoted fibromyalgia experts in the world and appears often as a guest on news and talk shows nationwide including Good Morning America, The Dr. Oz Show, Oprah & Friends, CNN, and Fox News Health.