July 29, 2016
By Lisa Petrison
Although a number of ME/CFS and chronic Lyme doctors are now beginning to consider the role that toxic mold may be playing in their patients’ case histories, Dr. Neil Nathan (who traveled across the country to learn about treatment of mold illness from Dr. Ritchie Shoemaker more than 10 years ago) has been actively interested in the topic for quite a long period of time.
In addition, Dr. Nathan has taken a particularly broad approach to treating mold-related illness, having incorporated into his own practice techniques used by Dr. Shoemaker, Dr. Joseph Brewer, Dr. Patricia Kane and Dr. William Rea, among others.
That being the case, he seems an especially appropriate physician to write what I see as the first book that is specifically focused on the topic of addressing severe chronic illness (such as ME/CFS, chronic Lyme or similar conditions) from the perspective of mold toxicity.
I personally think that it is high time that such a book was published and that (with one specific exception) Dr. Nathan does an excellent job of providing readers with an overview of the topic.
The book is additionally helpful in that Dr. Nathan shares in great detail the methods that he uses to treat his own patients, developed as a result of having worked with hundreds of individuals on mold issues over the course of a decade.
The book is called Mold and Mycotoxins: Current Evaluation and Treatment. It is currently available only in Amazon Kindle version.
While this article provides the basics of the book, I would advise practitioners or patients who are interested in following Dr. Nathan’s approach to spend the $9.99 to purchase the Kindle book rather than to just rely on what is stated here.
There is a large amount of really helpful information in it.
Although I have never met Dr. Nathan in person, the thing that I think I like best about him after having read his books and listened to his radio interviews is how committed he seems to be to figuring out how to help extremely ill patients.
Much more than most of the other doctors that are treating this sort of illness, Dr. Nathan seems willing to explore a wide variety of treatment approaches – including looking proactively at mold toxicity issues – in order to help these particularly difficult patients.
He also seems to be wholly willing to alter his treatments based on individual responses – an approach that seems to be essential for making sure that these particularly sensitive individuals do not get worse rather than better as a result of treatment.
I have intentionally written this book with a focus on the most sensitive and toxic patients for two reasons. First, if you can understand how to treat the most compromised of patients, treating your “typical” mold patient (if there is one) is much more straightforward and thus clinical course will be shorter and more dramatic. Second, if you are treating mold toxic patients, you WILL be seeing those complicated patients and I hope this will help you to understand how to proceed.
I am really grateful to Dr. Nathan for focusing his attention on these especially difficult and often frustrating patients, and thus hope that all physicians who have any interest at all in treating individuals with mold-related illness will read this book and consider carefully how he approaches the care of these especially severe individuals.
On the downside, where Dr. Nathan misses out is on the avoidance side of the equation.
Dr. Nathan does talk comprehensively about how to test for and address growing mold within the home, making it clear that he believes that insofar as exposures to it continues to occur, patients should not expect to see any significant improvements in their conditions.
So that part is good.
However, even though Dr. Nathan discussed the issue of cross-contamination in one of his radio discussions about mold, he does not bring it up in this book at all.
Nor does he bring up other critical mold avoidance issues, such as avoiding toxic locations; decontaminating after exposures; or developing the ability to judge for oneself when exposures are occurring by pursuing a mold avoidance sabbatical.
This is unfortunate since it seems (based on both survey research and anecdotal reports) that more severe patients benefit to a particularly large extent from scrupulous mold avoidance and that it is very hard for them to make any progress at all until they have gotten their exposures down to a very low level.
Of course, few of the other mold doctors are focusing very much on the benefits that effective mold avoidance can provide either. Most of them are basically saying that as long as you have a decent ERMI score and get rid of porous items, and wash everything else, you can call it good.
That may be sufficient for patients who are not very sick, but from what I am seeing, it is wholly inadequate for the more severe patients.
Of all the doctors out there, only Dr. Daniel Cagua-Koo seems to be focused on mold avoidance to the extent that it is necessary in order to effect a real recovery for severe patients. And that is likely only because he himself started out as a severe patient and now is rapidly moving toward full recovery as a result of having used a variety of treatments in the context of pursuing mold avoidance as vigorously as possible.
But still, Dr. Nathan seems to be a strong enough clinician and committed enough to the recoveries of severely ill patients that I am hopeful that he will soon realize how much benefit scrupulous mold avoidance (such as the type pioneered by Erik Johnson) can provide to severely ill patients and thus begin to focus more of his interest on that topic.
I’m keeping my fingers crossed anyway.
Toward the beginning of the book, Dr. Nathan suggests that several symptoms specifically suggest mold illness to him, including “ice pick” or “lightning bolt” electrical-like painful sensations; unusual areas of numbness and tingling; odd tics, spasms or seizure-like events; and disequilibrium and dizziness.
If these are reported in conjunction with fatigue, cognitive impairment and intense anxiety or depression, with an odd “buzzing” or “tremor” sensation in the body, think mold toxicity until proven otherwise.
The beginning of the book also includes a section summarizing Dr. Ritchie Shoemaker’s work on the Biotoxin Pathway (which Dr. Nathan suggests that he and Dr. Shoemaker jokingly called “Shoemaker for Dummies” a number of years ago).
Some historical information on illnesses related to mold toxins and other biotoxins also is included.
I wrote a Paradigm Change blog post a few months ago looking at the literature about the RealTime Laboratories test and suggesting that the science behind it is less solid than I would like to see in a test that is being used frequently within the ME/CFS community.
Dr. Nathan was cited in the article as appearing to be especially convinced that this test has merit for diagnostic purposes, and he shares the same point of view in his new book.
For instance, he suggests that his more severely ill patients often come up negative on the test at first due to their impaired detoxification capacities, but that they are more likely to come up as positive if they pursue sauna or glutathione therapy before collection of the sample.
He also says that his patients often come up with higher numbers on the test as time goes on, and proposes that this is because they are excreting more toxins as their detoxification capacity improves.
The diagnosis section also includes some information on the Functional Acuity Contrast Test (FACT), which is also known as the Visual Contrast Sensitivity (VCS) test.
The panel of lab tests commonly referred to as the Shoemaker tests also are discussed in the book, and the Shoemaker-recommended lab ranges are listed.
Dr. Nathan says that even though he uses these tests, he has not found them to be as helpful as the mycotoxin urine tests:
While I find these tests useful, they have not proven to be as specific as I had hoped to nail down the diagnosis of mold toxicity. Other inflammatory conditions, which in my world especially include infections with Lyme, Bartonella, Babesia, Mycoplasma and Chlamydia species (among others), can similarly affect these tests. When patients have several of these conditions, teasing the diagnoses apart becomes more difficult.
HLA DR Test
With regard to the HLA DR genetic testing, Dr. Nathan states:
My personal experience, having evaluated hundreds of patients with this test, is that I have not noted much correlation between clinical improvement and this test. This means that those with the so-called “dreaded” genes have often done as well, or better, than those without those genes. Accordingly, I have not found this test to be useful in distinguishing those who will respond to treatment from those who don’t.
Dr. Nathan further states that he believes that being diagnosed with a “dreaded” gene can scare patients into thinking that they do not have the potential to improve, and that he finds this to be counterproductive. He thus says he no longer tends to do this test.
I am especially interested in Dr. Nathan’s comments on this topic pursuant to my own findings on HLA DR from the 2015 Mold Avoidance Survey.
Of the 111 survey participants who had the testing done, following are the breakdowns:
96% At least one mold-susceptible or multi-susceptible
99% At least one susceptible
91% Two susceptible genes
62% At least one multi-susceptible
54% At least one mold-susceptible
56% Only multi-susceptible or mold susceptible
Based on this, it seems that the vast majority of patients who have been sick enough to have needed to avoid mold to at least some extent and to have bothered participating in the survey have at least one of the genes that Dr. Shoemaker has suggested are susceptible to getting this kind of illness.
However, what I was unable to find regardless of how much time I put into analyzing the data is any evidence that within this particular patient population, having a particular genotype (e.g. multi-susceptible rather than mold-susceptible) was associated with either having been more sick to begin with or being less likely to achieve a good recovery.
The fact that these findings (which I had not previously made public or shared with Dr. Nathan) are consistent with what Dr. Nathan reports having seen in his patient population makes me more convinced that there likely is some truth in them.
Dr. Nathan says that very frequently, his patients start out by denying that mold could have anything to do with their illnesses. Often, though, they return to see him having noticed mold in their current environments or remembered it from previous environments, he said.
He often encourages people to start out with Petri dish tests, just so that they can prove to themselves that mold actually is an issue for them.
He then encourages them to do an ERMI test and to follow the guidelines in the book Prescriptions for a Healthy House (written by Paula Baker-LaPorte, Erica Elliott and John Banta) in terms of remediation.
With regard to addressing mold problems in the home, Dr. Nathan writes:
You would be surprised to learn how many of my patients minimize, or skip over, this step, and wish they had not, months later. REMEMBER: YOU CANNOT GET WELL IF YOU ARE CONTINUOUSLY EXPOSED TO MOLD! I fully understand the financial implications of evaluating and remediating a home, and the disruption caused to a family or family member who must move out of that home (for a while). I understand the reluctance of patients and families to pursue this information and home remediation. BUT UNLESS THEY DO, THEY WILL NOT GET WELL. I cannot overstate this (although you may think I am trying to).
Again, although Dr. Nathan expresses an appropriate level of concern about the presence of growing mold in buildings, he does not even bring up any other issues related to mold exposures, such as cross-contamination of possessions, outdoor mold, or decontamination strategies.
Since large numbers of severely ill individuals have reported that these kinds of exposures can be more problematic for them than exposures to many buildings that come up poorly on the ERMI test, this seems to be a major hole in this otherwise excellent book.
With regard to cholestyramine (CSM), Dr. Nathan discusses issues such as medication timing; compounded vs. conventional pharmacy products; dealing with constipation; and, especially, the inability of complex patients to tolerate the medicine.
In terms of his experiences using CSM on his own complex patients, he writes:
The doses of medication recommended by Dr. Shoemaker could not be taken by the majority of my patients without setting the backwards and making them worse. To clarify this in terms of cholestyramine dosage: I have had very few patients able to take cholestyramine at more than 1 or 2 tsp a day. In fact, most of my patients must start at doses of 1/16 or 1/8 tsp every other day in order to get started without promoting a setback.
Dr. Nathan states that it is very important that these sensitive patients not attempt to fight through a negative reaction to the medication and that attempting to do so can make them worse for weeks or months.
What Dr. Nathan writes in this section is wholly consistent with what I have seen from the severe patients who tend to gravitate to the Mold Avoiders group and who tend to benefit from scrupulous mold avoidance.
While occasionally these individuals will be able to take cholestyramine in the doses suggested by the Shoemaker doctors, very frequently they cannot do so without having very negative reactions.
Based on what I have seen, I am in full agreement with Dr. Nathan that pushing through the negative symptoms with the hope of coming out on the other side is not an approach that very often works.
Nor have I seen the low-amylose diet or high-dose fish oil often been helpful in allowing these sensitive patients to tolerate that drug in the manner prescribed by the Shoemaker physicians.
What I actually have seen work fairly consistently is for people who are very reactive to try using cholestyramine only in the context of being very clear of mold exposures.
In such cases, they often can tolerate full doses of the product without any substantial negative symptoms and make quite rapid progress in detoxification. I experienced that myself, and I have gotten quite a lot of reports from other people about it working as well.
The reason for this appears to be that the overburdened body is purposely decreasing the respiration rate in order to protect itself from the oxidative stress being triggered by even very small amounts of mold toxin, since mold toxins + oxygen are more damaging than mold toxins alone.
After a few days of being clear of significant toxic exposures, the respiration rate appears to increase of its own accord, thus allowing liver flow to improve.
At this point, I believe, the toxins that are released from their storage places as a result of the use of the CSM are efficiently removed from the body by the liver, rather than just floating around causing damage.
(For those who are interested in this topic, I suggest watching a 2013 presentation by Dr. Paul Cheney, which summarizes the apparent oxygen toxicity and liver flow issues in these patients, though without bringing up slight exposures to mold as a possible trigger mechanism. With regard to why taking cholestyramine can prompt a negative reaction to begin with, Dr. Ritchie Shoemaker provides what I think is a plausible explanation in the chapter called “Lessons from Solving the Herxheimer” in his 2001 book Desperation Medicine.)
Unfortunately, the level of avoidance required for most people who are very reactive to be clear enough to be able to take cholestyramine in standard doses is on the ridiculous side, along the lines of needing to do tent camping with all new possessions in Death Valley or somewhere equally clear.
So this is not really going to be a possibility for most people, unless they are wiling and able to go to these extremes.
Still, for those who are determined to make progress, it could be considered as an alternative.
It’s also an important clue as to the etiology of the disease, that conceivably could lead to treatment breakthroughs further down the line.
Dr. Nathan summarizes the rest of the Shoemaker protocol, including the following:
* MARCoNS testing and treatment
* Vasopressin nasal spray
* Checking and addressing cortisol and DHEA levels
* Zocar (a statin drug) + CoQ10
* Low-amylose diet
* Omega-3 fatty acids
I actually was a bit surprised to see Actos and Procrit listed here, since I was under the impression that these were no longer included in the Shoemaker protocol due to the fact that they are often considered to be too dangerous to be used off-label on a routine basis.
Some of the other drugs mentioned by Dr. Nathan – such as Losartan and Zocar – do not seem to be used routinely by most of the Shoemaker physicians either.
Dr. Nathan does not really discuss in his book which drugs are more commonly used or how they should best be prescribed. Likely this is because he himself does not focus much on this protocol (though he does appear to prescribe some components of it to at least some patients).
Instead, he points out that Dr. Shoemaker offers a certification program and suggests that those interested in this approach consider completing that.
Without citing any specific sources, Dr. Nathan refers to literature that suggests that different mycotoxins tend to be removed from the body particularly well by different binders. He suggests that ochratoxin is bound well by CSM, Welchol and activated charcoal; aflatoxins by activated charcoal and bentonite clay; and trichothecenes by activated charcoal.
I personally have spent quite a large amount of time reading all the abstracts about all three of those mycotoxins (several thousand papers total) and don’t feel that the literature is at all clear in terms of providing much evidence that certain binders are appropriate for particular toxins but not for others. However, without any references, it is impossible to evaluate the claims that are being made here.
Dr. Nathan also brings up the supposedly good yeast S. boulardii as possibly having the ability to detoxify gliotoxin.
I have a particular interest in S. boulardii since I once had a very negative reaction to it, which may or may not have been die-off but which led me to the discovery that it actually has the potential of killing immunocompromised people. On the other hand, later in my recovery, I did well with S. boulardii (which I first experimented with again by accident due to its being present in the commercial probiotic beverage GT’s Kombucha).
Interestingly, Dr. Nathan reports that his very sensitive patients generally do very well with S. boulardii. So perhaps my own negative experience with it was just a fluke.
On the other hand. Dr. Nathan reports that his patients very often do not do well on any of the binders – even the non-prescription ones – unless they take extremely low doses of them.
He discusses at great length the importance of these sensitive individuals being careful not to take any more of these binders than they can handle with complete comfort:
Often they will tell me, “Neil, I’m just a little bit worse, so I will just tough my way through this and get better faster.” Oh no, they won’t. Hundreds have tried this with no success. Getting worse means getting more toxic, and this will not work.
Interestingly though, Dr. Nathan insists that even very small amounts of binders can be significantly helpful to patients as long as they do not feel worse while taking them.
For instance, some of his patients start out by taking 1/16 teaspoon of CSM every other day; a portion of a capsule of Welchol or activated charcoal per day; 50 mg of bentonite clay per day; or 1/8 of a tablet of chlorella every other day.
Considering that the standard dose of chlorella is often stated as 15 tablets, twice a day, that last one is a very low dose indeed!
My guess here is that the reason that so many of Dr. Nathan’s patients can only tolerate such low doses of these substances is not just because they started out particularly sick but also because they are still getting exposures to particularly problematic toxins due to their lack of attention to any sort of mold avoidance beyond considering what might be currently growing in their homes.
Nonetheless, the assertion that even very tiny amounts of binders can be substantially helpful to people is an interesting one. I would like to see some more case studies of people trying that.
In addition to using binders, Dr. Nathan finds treatments of fungal sinus infections to be helpful for his patients. This is commonly referred to as the “Brewer treatment” (even though Dr. Brewer did not develop the therapy and was not the first ME/CFS doctor to use it), and Dr. Nathan and Dr. Brewer previously discussed the treatment in two in-depth radio interviews.
(The foreword to Dr. Nathan’s book also is written by Dr. Brewer.)
Dr. Nathan writes that he usually starts patients on a nasal spray of the hydrosol silver preparation Argentyn 23. Once they are doing well with that, he then adds a prescription antifungal nasal spray to the mix.
Dr. Nathan suggests that he chooses different antifungals for patients based on how sensitive they are in general (in part determined by how well they have been able to tolerate various binders). The mildest is Nystatin; somewhat stronger is ketoconazole; and the strongest is amphotericin B.
In order to address biofilms, he adds either BEG spray (a combination of two antibiotics and EDTA, commonly used to address MARCoNS infections) or plain EDTA to the antifungal spray.
Once the nasal spray is being tolerated, Dr. Nathan focuses on addressing fungal colonization of the intestinal tract. He says he tends to start with the silver hydrosol and then turns to Sporonax (itraconazole) along with a biofilm buster (such as ProThera’s Interfase Plus or Beyond Balance’s MC BFM).
Finally, with regard to fungal infections, Dr. Nathan prescribes oral Nystatin (helpful for Candida) and the supplement NAC (which he and Dr. Brewer believe inactivates gliotoxin).
As with the binders, Dr. Nathan makes it very clear that it is his position that the treatment of fungi needs to be addressed conservatively enough that there are no negative side effects whatsoever, in order for patients to make any progress toward healing.
Dr. Nathan says that he also uses a variety of other treatments for his patients with mold issues. These include:
* ToxEase (a supplement from Beyond Balance designed to help the liver and digestive tract)
* Ititres and Renelix (homeopathic preparations from BioResource)
* Epsom salt baths
* Infrared sauna
* Oil pulling
* MycoRegen (a supplement from Beyond Balance)
* A-FNG (a supplement from Byron White)
* Activated folate and B12 to support methylation (if tolerated)
* Intraveneous phosphatidyl choline
* Nasal insufflations of ozone
* Low-dose immunotherapy (LDI)
* Transfer factor
Again, with all of these, he stresses that they should only be used if they are not making patients feel worse.
If patients do feel worse as a result of using them, then backing off to the usage amounts that they can tolerate without any negative symptoms is critical, he says.
All in all, I think this is an excellent book that summarizes the existing knowledge about medical treatment of mold-related illness in a fast, readable, comprehensive and usable way.
The focus on severe patients and the insistence that these people not pursue treatments that are making them worse in the hope of eventually getting better is especially welcome.
Certainly, I do wish that there were more recognition in the book that for severe patients, effective avoidance does not mean just staying out of buildings with active mold growth.
But other than that, I am very pleased that this book is available and think that it will end up helping a great many severe chronic illness patients to get better medical care and move toward healing.
About the Author
Lisa Petrison earned her Ph.D. in marketing and social psychology from the Kellogg School of Management at Northwestern University, then worked as a tenure track professor at Loyola University Chicago before becoming disabled with ME/CFS in 2001.
She now is mostly recovered from the illness and is the executive director of Paradigm Change.
More From Dr. Neil Nathan
Dr. Nathan and co-host Dr. Jacob Teitelbaum interviewed Dr. Ritchie Shoemaker in an online audio interview in 2014.
A transcript of the interview with Dr. Shoemaker was presented as a Paradigm Change blog article.
Dr. Nathan collaborated with Scott Forsgren and Dr. Wayne Anderson, N.D., on an article published in Townsend Letter in July 2014. The title was “Mold and Mycotoxins: Often Overlooked Factors in Chronic Lyme Disease.”
Dr. Nathan’s previous book also includes some mold discussion. It is called Healing is Possible: New Hope for Chronic Fatigue, Fibromyalgia, Persistent Pain, and Other Chronic Illnesses.
From Paradigm Change
My Paradigm Change blog article discussing issues with the RealTime Laboratories tests is called “Looking at the Literature About Mycotoxin Urine Tests.”
The apparent relevant importance of mold avoidance vs other types of therapies for more severe patients as well as for less severe patients is discussed in another recent Paradigm Change blog article, called “What Therapies Do Improved Mold Avoiders Believe Helped Them?”
The book A Beginner’s Guide to Mold Avoidance summarizes the mold avoidance approach that large numbers of severely ill patients have found to be particularly helpful. The book is available for free in PDF format to those who sign up for occasional email newsletters on mold avoidance and also is available in an Amazon Kindle version.
The book is the basis for the Facebook group Mold Avoiders, which now has more than 3500 members. Please join us there!
For updates on additional information about recovering from mold-related illness, sign up for occasional newsletters from Paradigm Change. You also will receive a free copy of the book Back from the Edge, which provides information about the extraordinary life of mold avoidance pioneer Erik Johnson.
Find out about new information about recovering from chronic illness and living a healthful lifestyle by liking the Living Clean in a Dirty World page on Facebook.
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