Navigating Mold Toxicity & Treatment

How to heal mold illness with leading expert Dr. Neil Nathan.

Mold toxicity and mold illness can be very difficult to heal and treat. In this podcast, mold expert Dr. Neil Nathan shares his wisdom gleaned from treating thousands of patients with mold toxicity about how to succeed.

In This Episode

Dr. Neil Nathan’s Background … 00:04:59
Divergence from Dr. Shoemaker Approach … 00:06:14
Is Mold Treatment Working? … 00:12:15
Clinical Signs of Healing … 00:17:24
Dosing Mold Binders … 00:20:35
Tolerating Treatment … 00:21:36
Limbic Dysfunction, Vagal Nerve Dysfunction, & MAST Cell Activation … 00:22:57
Limbic System Therapy and MCAS Treatment … 00:30:23
Time to Mold Symptom Improvement … 00:32:01
Mold Lab Testing … 00:34:37
Can Food Affect Mold Tests? … 00:42:32
Mold Colonization & When to Treat … 00:52:41
Thoughts on Indoor Air Testing for Mold … 00:56:56
Indoor Air Professional Resources … 01:01:24

Navigating Mold Toxicity & Treatment -

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It’s important to have realistic expectations of the time to succeed at mold treatment

  • Some patients improve within 3-4 months (fast responder).
  • Most take 1-3 years to notice a response, especially if colonized.
  • Need to take treatment very slowly.

Mold Lab Testing

  • Combination of Great Plains Laboratory and Real Time mycotoxin tests catches full spectrum of mycotoxins
    • Ochratoxin
    • Mycophenolic acid
    • Dihydrocitrinone
    • Zearalenone
    • Gliotoxin
    • Aflatoxin
    • Trichothecene
    • Sterigmatocystin
    • Roridin
    • Verrucarin
    • Enniatin
    • Chaetoglobosin
  • Dr. Nathan has tested Vibrant Health mycotoxin test, does not feel it to be accurate.
  • Retests whichever lab is most helpful/positive, every 4-6 months. 80% of the time, 2nd tests will be worse, but patient is improving.
  • Foods do not seem to skew testing
  • A study published in the November 2019 Townsend Newsletter showed that mycotoxin levels and colonization were significantly higher in mold patients than controls.  

Sponsored Resources

Hi everyone. I want to thank Doctor’s Data who helped to make this podcast possible and who I’m very excited to say has now released a profile called the GI 360 which is finally a validated microbiota mapping measure.

Navigating Mold Toxicity & Treatment - ddi logo centered 2col 300

If you remember back, I’ve discussed numerous times the only lab that is really validating a mapping of the microbiota to have clinical significance is the GA map out of Norway. Well, turns out that Doctor’s Data is not only using the same methodology but also in collaboration with this group in Norway using their parameters to adjust what we call normal, abnormal or dysbiotic and normal. So great news, we finally have a validated measure.

Now this test also offers, in addition to the microbiota dysbiosis index, a PCR assessment for bacteria, virus and pathogens, a comprehensive microscopy for a parasite, a MALDI-TOF bacteria and yeast culture. And as you would imagine, because of the rigorous validation they’ve gone through, they also have approval from the CE, which is equivalent to the European FDA.
So great test, please check them out. Doctor’s Data is offering 50% off a practitioner’s first GI 360 test kit. Go to doctorsdata.com/Ruscio to claim your first kit, limit one per provider. The offer ends October 31st, 2020.


Binder Therapy

  • Start slow and build up over time. Do not use binders that cause reaction even at low dose.
  • Chlorella, charcoal, cholestyramine, and more
  • If patients are highly reactive, need limbic/vagal or MCAS therapy first– usually 6-8 weeks at least

Mold Treatment

  • Time to response:
    • Varies widely, can be several months before the patient sees any results at all.
    • Reactions to binders are usually due to too aggressive of a dose
  • Treatment flow:
    • Clean up home or work environment, add binders
    • If reactions, start MCAS and/or limbic/vagal
    • Antimicrobials if responding slowly
  • Colonization (sinus and GI):
    • Mold can colonize sinuses, GI tract, or both.
    • No good testing is available.
    • Try binders first. If helping, will only use binders.
    • If binders are not helping, or only slightly, and/or retests keep going up, will start on antimicrobial therapy.
    • Nasal therapy for nasal symptoms, GI therapies for GI symptoms.  Many need both.
  • The environment must be addressed, or patient won’t heal
    • Assessment should not be done by those who are tied to remediation company
    • Air sampling alone is inadequate.  ERMI and tape tests should be included.

MCAS vs Mycotoxicity

  • MCAS reactions usually appear within 15 minutes of eating/drinking
  • Limbic/vagal – constant worry, emotions, fanatical

Recommended Indoor Air Specialists:

John Banta with Restoration Consultants in Sacramento, CA

Mike Shrantz with Environmental Analytics in Tucson, AZ

➕ Resources & Links
➕ Full Podcast Transcript

Intro:

Welcome to Dr. Ruscio radio providing practical and science-based solutions to feeling your best to stay up to date on the latest topics as well as all of our prior episodes. Please make sure to subscribe in your podcast player. For weekly updates, visit DrRuscio.com. The following discussion is for educational purposes only and is not intended to diagnose or treat any disease. Please do not apply any of this information without first speaking to your doctor. Now, let’s head to the show.

Dr Michael Ruscio:

Hi everyone. In today’s podcast, I speak with Dr. Neil Nathan, who is arguably one of the founding fathers of the contemporary movement in mold treatment. He started off working with Richard Shoemaker and at some point diverged into his own kind of camp of thinking, which is a bit more modern, a bit more simplistic, and patient centered. Many of the guests that we’ve had on the podcast who have discussed more new-age, non- “Richie Shoemaker” methods of mold testing, and treatment, and such, seem to be an outgrowth of much of the thinking that Dr. Neil Nathan has pioneered. Obviously this was a great conversation. He gives some good clarity on some of the debate regarding what test is the best test. He essentially has two different tests that he sanctions and one or two that he warns against. Also some great insights on how to navigate binding therapy and reactions to binding therapy, and how to set the appropriate time expectation for when one should know that binding therapy is working correctly.

DrMR:

One of the things I really appreciated about the conversation was you could clearly tell he has treated many, many a patient because typically the more experienced someone is, the more simplified the recommendations become. Because with enough experience, they’ve been able to hone in on what works and they’ve really reconciled a lot of the confusion that leads to a recommendation, looking more complicated on the surface. Those few things alone were fantastic. He also provides some recommendations about nasal colonization versus gastrointestinal tract colonization, and how to determine the best professionals to use for an assessment of one’s home or environment. We also touch on when to incorporate mast cell activation therapy and/or limbic or vagal therapy. This is, unarguably a pretty detailed podcast. If you’re someone who is new to this, you can certainly hang with it. But we went a little bit deeper, not complicated, not confusing, not esoteric language, but deeper into the clinical nuances and how to apply treatment, monitor treatment, what the best lab tests are, etc. He also mentions his book, which is called Toxic, which lays out a lot of these same recommendations. So I think you will really enjoy this, what is now our sixth interview on this topic. I feel they’re getting better each time. I guess with that in mind, if you’ve been enjoying the podcast and learning and benefiting from it, please share it and/or head over to iTunes and leave us a quick review. With that, I will now take you to the interview with Dr. Neil Nathan on mold, mold toxicity, treatment testing, and navigating the speed bumps that one can hit along the way.

DrMR:

Hi, everyone. Welcome back to another episode of Dr. Ruscio radio. This is Dr. Ruscio, here today with Dr. Neil Nathan to discuss all things mold. Neil, welcome to the show.

DrNeilNathan:

Thank you for having me.

DrMR:

It’s great to have you here. Dr. Joe Mathur, who is a colleague I often discuss mold with along with the litany of challenges with mold testing and treatment and monitoring. He’s mentioned your name several times as someone who he really looks to for his education. So I really wanted to have you on the podcast and go over some of the things in the area of mold that are still confusing to me, or I’d like to get better clarity on.

Dr. Neil Nathan’s Background

DrMR:

Before we jump into that, in case our audience hasn’t heard your name before, can you give us the brief rundown on your history?

DrNN:

Sure. I’m a medical doctor / MD type. Been practicing medicine for 49 years now, which means I’m old. I’ve written a whole bunch of books over the years. The one that is getting the most airtime that might be most relevant to your listeners was the one that came out about a year and a half ago called Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, and Multiple Chemical Sensitivities. It’s an overview of how to look at and approach all of these chronic inflammatory conditions and it’s been well received. I think that that might be helpful for folks. So basically I have a large full practice. I’m still practicing medicine, still seeing patients. I do a lot of consultation work, a lot of teaching work, a lot of mentoring work. And I kind of lecture all over the world, sharing what I know. So,

Divergence from Dr. Shoemaker’s Approach

DrMR:

You seem to be someone who maybe started the divergence from what was initially the predominant camp of thinking, as I call it, the Richie Shoemaker type approach. We have discussed this previously on the podcast. The Shoemaker approach is great in the sense that it really brought some of this to the forefront, but it does seem to be a bit meticulous or maybe not quite as pragmatic as it could be. So would you maybe talk about that? Because one of the things I think patients and clinicians struggle with is that there does seem to be kind of two different philosophies. One philosophy may recommend, let’s say, two tests and another may recommend five or six tests. Just kind of painting with a broad brush here to give people some, some sort of description of what this may look like when they’re trying to confront it on the other end. So it seems like you’re embodying more of this simplistic, clinician boots on the ground, get to the point, whereas a Shoemaker may be a bit more robust, but maybe you could tell us a little bit about that backstory.

DrNN:

Sure. I’ll be happy to . First, I’d like to say that even though people think of me as the mold guy, I don’t think of me as the mold guy. I came into this field from the area of chronic pain management and we found back in the early eighties, there was a weird illness called fibrositis, which we now call fibromyalgia. It seemed to be showing up out of the blue in epidemic proportions and still is. So back in the early days, when we were trying to understand it, we originally came to it from a biochemical point of view. Working with Dr. Jacob Teitelbaum back in those days, we began to understand that fibromyalgia and chronic fatigue weren’t things in and of themselves, but they were caused by things that we could identify, diagnose, and treat quite effectively. Over time, we began to realize in this epidemic, that Lyme disease was a part of it.

DrNN:

And later, thanks to the work of Dr. Shoemaker, we began to realize that mold toxicity was a major player as well. So I just wanted to take a moment here to put that in context. So getting at your specific question here, I began working with Dr. Shoemaker back in 2005, when his book Mold Warriors was published. I read his book and one of the early sections of his book he discusses what he calls the biotoxin pathway. I read it and was very impressed. I literally got on the phone and called him up and said, I need to come out to Pocomoke, Maryland, and study with you. And he welcomed me. And I like to think we’ve been friends ever since. So in the early days I followed his protocol. I did a lot of teaching with him, but over time, I began to find that some of the things that he was teaching didn’t really resonate in terms of the effectiveness and patient care.

New Speaker:

We can talk about that. For example, he virtually exclusively used colestyramine as his only binder. But as we began to study this, we began to realize that there were many mold, toxins present, and colestyramine is a wonderful binder for ochratoxin, which is probably the most common toxin out there. It’s not a very good binder for many of the other toxins like trichothecenes, aflatoxin or gliotoxin. It became obvious that we needed a more comprehensive approach to look at each toxin that we could identify and use the correct binder for the correct toxin. That was a secondary divergence because Dr. Shoemaker has never embraced urine mycotoxin testing, which from my perspective is the cat’s meow of how we make the diagnosis. It is very specific, quite accurate, and it tells us exactly what toxins are in the patient’s urine now and that tells us, it gives us a blueprint of how to go about treating it. There are several other points of divergence, for example, early on Dr. Shoemaker thought that MARCoNS, which is a form of staph in the nose was extremely important and had to be eradicated. As time went on, we realized it was virtually impossible to eradicate it. It’s not really an infection. It’s more of a colonization. A commensurate is a more accurate term for it. A lot of the work that people do to both identify MARCoNS and treat it may not be necessary or helpful or even indicated. Last as a major divergence and thinking Dr. Shoemaker does not believe that mold colonizes the body and Dr. Joe Brewer, with whom I’ve worked very closely, has shown very clearly that mold does colonize the body, especially in the sinus and gut areas. If you don’t treat the mold there, it will stay in those parts of the body and make ongoing toxin. So getting well will be very difficult. So Dr. Shoemaker and I began to diverge and we began to put together with Dr. Brewer, a different approach that is eminently practical and based on our clinical outcomes.

DrMR:

Okay. So a lot to dig into there. Thank you for that. I’m making a few notes here to kind of come back to how we sequence some of these treatments a little later, but one of the things I’d like to get your take on, and I guess, let me front load this question with a little bit of context.

Is Mold Treatment Working?

New Speaker:

I love this field. I think everyone in the audience knows that I love this field, but I also have concerns that there’s a lot of the dogma or placebo driven testing and treatment. If enough people think something, including clinicians, we can really confirmation bias ourselves into seeing therapeutic effect where there is none. So I look for the best indicators that we can find to really keep me on the straight and narrow and from falling into this confirmation bias. As just one example, we’ve discussed in the podcast before oral immunoglobulin therapy for patients with IBS and other like digestive symptoms and, as normal, I’m skeptical of this therapy at first open-minded, but skeptical. You’ll see a notable, either patient response or lack thereof, usually within two to three weeks. So when I started experimenting with it in the clinic, in only a few months, I was able to get a pretty good handle on this therapy and able to identify that this is something that helps, I would estimate anywhere from 50 to 75% of patients. With mold, the few things that I struggle with are there’s controversy regarding testing, and at least from what I’ve gathered, and certainly I’m no expert here, but from what I’ve gathered, the time to response symptomatically from binding therapy, may be a few months. So those things make it much more difficult for me to get a solid read on these things. Cause patients, as I’m sure, you know, they tend to kind of oscillate from week to week or month to month. And so if I’m monitoring someone over a few month period, and trying to ascertain are the binders really leading to this resolution, it gets hard because the time window of reassessment is so large and then I have to combine that with the fact that the testing is a little bit perhaps ambiguous, or at least there’s disagreement amongst the different specialists I’ve interviewed. All, this is making a challenge for me to, to get a solid read on this. What would you offer up as, as maybe things for me to look to, to help me better hone in on this as I’m trying to dial it in clinically. I know that’s a broad question, but whatever you can offer.

DrNN:

There’s a lot in your question. First, I think it’s important to have realistic expectations of how long treatment takes. It’s much longer than months. And it will vary tremendously. If you have a patient who has only recently been exposed to mold and they haven’t colonized, maybe a few of them will get better within three or four months. Sometimes amazingly better. You get a few of those and you go, okay, I kind of know what I’m doing. Certainly some people are responding to this quickly. I’ve been doing this long enough now that as you might imagine, I am basically treating the referrals of physicians who are having trouble with their patients. So I’m kind of getting the most difficult, most sensitive patients that my colleagues are having trouble with. Basically this is going to take us a year or more at least. When I say, at least many of my patients, I have to treat them for two, three years or more to get them well. So this is a very unusual type of illness in that you gotta be in it for the long haul. These toxins do not leave the body easily and many of the patients who are the sickest have such compromised chemistry, and such difficulty with detoxification, that you have to do a lot of preparatory work to even get them to the point that they can accept the basics of treatment. So my first response to what you’re saying is you have to come to the table with a realistic understanding that this is really going to take a lot of time. I often will tell my patients at the first visit. I hope you like me because we’re going to be spending a lot of time together.

DrNN:

I think that is a key problem. Patients enter with an expectation of, well, this is just like a bad cold, and a couple of weeks I’ll be better, right? You’ve got to tell them from the get go, no, this is a different critter. This you have literally been poisoned and your system is going to take longer than you would hope to get better, but the likelihood is you will get better. I would estimate that I’ve treated well over 2,000 patients with mold at this point, the vast majority get well. So it’s treatable, but one of what I call the common rookie mistake is not treating long enough or comprehensively enough to see results. Many of my patients won’t even notice any improvement for three, four months, sometimes five or six months. So if they walk in saying “Neil, I’ve been taking your binders for three weeks and I don’t feel any better” and I’ll go, okay, let’s keep going.

Clinical Signs of Healing

DrMR:

I guess the first bar I’m trying to clear is what’s the initial indicator you’re looking for. And I know this may vary from more mild cases to the more severe cases, but what kind of indicator is telling you that you’re on the right track versus not on the right track? Are you getting someone on tolerated, binding protocol as an example, and then recommending a follow up in three months and then maybe another three months. And are you just kind of satisfying this by opening up your followup window? Or is there another way that you’re monitoring this?

DrNN:

Yeah, I monitor my patients much more closely than that. Initially I’ll see patients every four to six weeks. Later on maybe every six to eight weeks, but I don’t wait that long. A huge part of this treatment requires what I call tweaking. When you give binders to a patient who has mold toxicity, binders are the correct term, but they’re not understood properly. When you say the word bind, you get a feeling of like your two hands coming together and locking up. That’s not what’s happening here. The binding is loose. It’s closer to static cling than it is to what we think of as bound. So the word is misleading. So when you take charcoal, for example, we know that charcoal works by adsorbing, which is like static cling, where it loosely attaches to the outside surface of whatever is it’s “binding to”.

DrNN:

So as that molecule of toxin, loosely bound to charcoal goes wandering through the GI tract. Some of those molecules are going to fall off and they’re going to be reabsorbed. So if your dose of charcoal or any other binder, isn’t correct, you’re actually going to be releasing more toxins than that patient can process. Then you’re going to make them worse. And that happens very, very commonly. The single biggest problem with treating mold is you have to start at low doses and really monitor your patient. The other thing that’s part of my treatment program is everyone has my email address. And my patients email me. I would say almost constantly, weekly every or every other week to update me about what they’re experiencing so that I can tweak it. The single most important thing that someone’s got to do is change the dose if it’s not working. If a patient gets anywhere worse with any dose of anything, you’re overdoing it. You can’t bully your way through that. They’re going to get worse and worse and worse and more toxic. So again, you’ve got to approach this in a different way than you would approach a lot of other illnesses. And you’ve got to prepare the patient at the first visit for this process.

Dosing Binders

DrMR:

Hmm. That’s actually incredibly helpful. So it’s a very dose dependent endeavor and it sounds like you’re generally starting low and then slowly titrating your way up to your target dose.

Speaker 4:

Right. And you can’t use doses that you are used to using with other illnesses. So for example, chlorella, one of my more favorite binders. On most packages of chlorella, it will say take 10 to 15 tablets twice a day. If you do that with most small patients, you’re going to throw them under the bus. Most of my mold patients cannot take more than three tablets of chlorella a day. So it’s important that in these patients, we don’t apply the same principles of treatment that we do to other conditions, because they won’t apply. You’re going to be very frustrated and your patient is going to be very frustrated if you don’t understand what you’re doing and how they’re responding to what you’re attempting to do.

Tolerating Treatment

DrMR:

Now, how are you determining or distinguishing between going too aggressive versus someone just doesn’t tolerate a given therapeutic. Are you just simply looking for, even if they don’t tolerate a low dose?

DrNN:

That’s a very important question. So, first of all, I listen to my patient. No matter what the dose is or how low, if they are reacting to it, I don’t give them that, period. Now, I’m going to take two steps backward from that, because there are several medical conditions that mold toxicity triggers that if you don’t identify and you don’t treat them, you may not be able to give them anything because they won’t be able to even take it. So mold toxicity triggers limbic dysfunction, vagal nerve dysfunction, and mast cell activation. And so for your sensitive patients, when they’re telling you come on, I can’t even take a teeny bit of this it’s making me worse, I’m listening. And then for those patients, before we even give them binder, I need to look for and address Limbic dysfunction, vagal nerve dysfunction, and, mast cell activation.

Limbic Dysfunction, Vagal Nerve Dysfunction, & MAST Cell Activation

DrNN:

Let me just talk about those three conditions for a moment, because they are important. They’re extremely common and they’re often missed.

DrMR:

Please do. We’ve had guests on all three of those on the podcast before, but definitely want to hear your elaboration on how your incorporating those.

DrNN:

Sure. I’ll give you the quick cliff note version.

Sponsored Resources:

Hi everyone. I want to thank Doctors Data who helped to make this podcast possible and, who I’m very excited to say, has now released a profile called the GI 360, which is finally a validated microbiota mapping measure. If you remember back, I’ve discussed numerous times, the only lab that is really validating a mapping of the microbiota to have clinical significance is the GA MAP out of Norway. Well, turns out that Doctor’s Data is not only using the same methodology, but also in collaboration with this group in Norway using their parameters to adjust what we call normal abnormal, or dysbiotic and normal. So great news. We finally have a validated measure. Now this test also offers in addition to the microbiota dysbiosis index, they also offer a PCR assessment for bacteria, virus, and pathogens, a comprehensive microscopy for parasite, and a MALDI-TOFF bacteria and yeast culture. As you would imagine, because of the rigorous validation they’ve gone through, they also have approval from the CE, which is equivalent to the European FDA. So great tests. Please check them out. Doctor’s Data is offering 50% off a practitioner’s first GI 360 test kit go to doctor’s data.com/ruscio to claim your first kit. Limit one per provider. And the offer ends October 31st, 2020.

DrNN:

So the limbic system is the part of the brain that monitors and deals with emotion, sensitivity, energy, cognition, and pain. All very common symptoms that our patients have. The key ones here, cognition and fatigue, are common throughout all of these inflammatory conditions. In addition, emotion, intense anxiety, depression, OCD, mood swings, and sensitivity, that includes sensitivity to light sound, chemicals, smells, touch, food and EMF. So if you have a patient who gives you symptoms in those categories, you almost certainly have Limbic dysfunction. And you really want to treat that early, or you’re not going anywhere. The Limbic system connects to a different part of the brain, which is often termed polyvagal theory in which the Vagus nerve and some of the other cranial nerves connected to it are responsible for the body’s perception of safety. Many of these patients feel like their bodies have betrayed them.

DrNN:

So the Vagus nerve and Limbic systems work together to monitor the environment for safety and eventually they become hypervigilant. So that the nervous system, it’s not a psychological issue, the nervous system itself, in an attempt to protect the body, is going, Oh, I don’t know about that substance. I don’t quite trust it. So I’m not going to let you take it. If you don’t address these two areas early, we’re not going anywhere because the body will interpret any stimulus that it’s not comfortable with as a potential threat. So we’re stuck. If we add to that mast cell activation, then we’re off to the races. Probably 50 to 70% of my mold patients will eventually develop mast cell activation. The key symptom there, not the only one, but the the tip off is, if a patient has a symptom that comes on within 15 minutes of eating or drinking something, think mast cell activation. And again, we have to address that with the supplements and medications that are appropriate to quiet that down. Only when we’ve looked at that, can we really get going on treating mold with correct binders.

DrMR:

Would you say it’s a trending observation that when someone just seems constitutionally worried, anxious, OCD, emotional, fanatical, that’s more indicative of Limbic or Vagal, but if maybe neurologically psychologically, they seem more on even footing, but there are these reactions that are somewhat acute from foods and supplements. That’s how you’re distinguishing between Limbic / Vagal as compared to MCAS.

DrNN:

Yeah, largely, but they overlap. There’s a tremendous overlap between Limbic dysfunction and mast cell activation. So we could be splitting hairs here. Bottom line is, if they have it, I need to treat it or we’re not going anywhere.

DrMR:

Okay. So coming back to the binders for just a second. So you’re saying that any reaction, even at a low dose, you’re not going to use that binder, using that term loosely, but just because people are used to that term, you’re not going to use that binder at all, or might you deviate and say, okay, let’s put binding therapy on pause for a bit, go to Limbic and / or MCAS and then return. That could be a tough issue to navigate for clinicians. When do you fully feel confident that you have identified a true reaction to a therapy as compared to it being confounded by one of these other variables?

DrNN:

Well, my bottom line is I always listen to my patient. If they are telling me they react, they do, you don’t push that. So the simple answer to your question is, first of all, most patients have a number of binder possibilities. So if they can’t take chlorella, for example, I’ll start them on tiny amounts of clay or charcoal. So I’m not going to give up if they can’t take one material, I’m going to try others, often at very, very low doses. If they still can’t do that, then I know I’ve got to go back and work on the Limbic system and Vagus nerve first.

DrMR:

So you’re saying, even if you try a few different binders and you’re seeing reactions to all of them, now you’re seeing this more reactive trend. So you shift gears.

DrNN:

Absolutely. My patient is basically saying, ok, won’t do it, can’t do it. And I say okay, then let’s get this quieted down. And in very sensitive patients, you sometimes have to wait. It could take commonly six to eight weeks of just those treatments before you move forward. And in really sensitive patients it has taken me six months, nine months, even a year before they could get going on binders.

Limbic System Therapy and MCAS Treatment

DrMR:

With Limbic therapy, I think we have some pretty good information for our audience. Also with MCAS. I guess the one question I did want to just tack on here before we leave this part of the conversation is with MCAS therapies. We’ve had Lawrence Afrin on the podcast, Tonya Dempsey, and they’ve laid out a about two weeks to be able to tell if the agents working up to maybe four weeks. And at that period of time, if you’re not seeing a noticeable improvement use a different one. Are you seeing that same kind of time interval be true?

DrNN:

Yeah, I do. I worked closely with Dr. Afrin. He even reviewed the chapter on mast cell activation in my book for accuracy. And again, I don’t want to be self serving, but there are chapters of my book on everything we’re talking about. If your listeners want to kind of expand on that.

DrMR:

And the title of that book is?

DrNN:

Toxic. Available on Amazon, and I’m very excited that it just came out in audio. So for those patients who are cognitively impaired and have trouble reading, now it’s available in audio. And I was really pumped because they let me read a few sections of the book, small ones, but I always wanted to read some of my books. I was really cool about doing that.

DrMR:

Great, great. Well, I’m sure our audience will be very happy that that’s available and also on the audio, I myself find it a lot easier just to squeeze audio learning in. So, great stuff.

Time to Mold Symptom Improvement

DrMR:

So a few different ways I’d like to go here. I guess the other item I wanted to touch on was when you said you might see improvements within three to four months or some people it may take as long as a year. Is that the first discernible improvement? I’m assuming that’s what I mean.

DrNN:

Correct. And it varies tremendously. Some people will start noticing improvement fairly quickly. And some people won’t notice much for three or four months. I’m a very patient guy, as you’re probably realizing. My process is, if you’re improving, we’re just going to keep moving forward. And if patients can stay with reasonable expectations, they will get well eventually. If their expectations are unreasonable, we’re to say goodbye. I’m going to find someone who will go treat this more aggressively, and I can almost promise you they’re going to be disappointed.

DrMR:

That’s really good for me to hear it. I think I’m kind of confronting now one, I suppose you could call it a bias, that I may be bringing into the world of mycotoxins that may not be serving me. I take this from GI where I’ve found that I’ve been able to really accelerate how quickly we get GI patients healthy, just by challenging norms, being a little bit inpatient, although I should also say, and this is a talk I have with patients on a daily basis. If you’re improving and trending in the right direction, I’m fine with the slow and steady. And I don’t want to get greedy and rush, because then we run the risk of crashing and burning. So I am patient, but I think the timescale, if I’m being patient with the IBS or SIBO patient, the timescale is much shorter than the mycotoxin timescale. So I think for me, what I’m seeing in my head is just a reallocation of what I consider our normal timescale. On the one hand I do try to be patient to your point 1000%. On the other hand, I’m always trying to get patients as well, as quickly as possible. And I think in the mycotoxin realm, I may have been a little bit too skewed toward the goal of getting them well as soon as possible, it may be kind of a fettering my ability to read this.

DrNN:

Yeah. We all want to get our patients well as soon as possible. Absolutely. But this whole field has taught me that it’s on their timetable, not mine. And that’s really key.

Mold Lab Testing

DrMR:

Sure. Let’s touch now on the ball of yarn of lab testing. As I asked more people on the podcast for their recommendations, two tests kept coming up, Great Plains and Vibrant Wellness. And I know Dr. Jill Crista has been doing some investigation and in light of that, she is now favoring Vibrant Wellness, I believe. Sorry, Jill, if I’m misquoting you there.

DrNN:

I think that that Dr. Jill Carnahan favors Vibrant Wellness as well.

DrMR:

Jill Carnahan may also. I haven’t spoken with her about mold in over a year. The point I’m trying to throw out there is at least we have these two tests that are simple urine tests. They’re not super expensive,

DrNN:

But we’ve got more.

DrMR:

Okay. Yeah, please.

DrNN:

We’ve got more and I’m going to disagree.

DrMR:

That’s what I’m looking for.

DrNN:

So I’ve done thousands of urine mycotoxin tests at this point. The two labs that I use are Great Plains and Real Time. I hope I can emphasize Real Time here as well. The technology used by Great Plains and Real Time is completely different and they give us completely different answers. So when I’m working with patients, I get both Real Time and Great Plains as my initial testing. Great Plains is much more accurate for ochratoxin, mycophenolic acid, citron, and zearalenone and Real Time is much more accurate for gliotoxinn, aflatoxin, trichothecenes. If you don’t get both, you’re going to be under the impression that you’re monitoring what’s going on in your patient, but you’re only getting a partial answer. Vibrant Health came on the scene more recently, and I hate to confuse your audience, but I and several other physicians with Vibrant Health permission use their tests and got the identical tests on the same urine at the same time on the same patient from Great Plains and Real Time. The Vibrant Health results were totally inadequate compared to Real Time and Great Plains. So until they can prove to me that they’re more accurate, I do not recommend it as an initial test. The ones that I’ve used the most, by far, are Real Time and Great Plains. So I’m going to disagree with the speakers and I do not want to throw aspersions here, but Jill Carnahan speaks for Vibrant Health and I don’t speak for anybody. In other words, I have no financial affiliation with any lab or product that I ever talk about. So I’m going to throw in a monkey wrench to making this simple and suggest that there are other answers.

DrMR:

Sure. I mean that’s why we’re having this discussion because I think we’re all trying to find the answer, although it’s not always super apparent. Certainly I would be inclined to think the person who’s the most specialized and therefore seeing the most number of cases is likely going to have the best read on this.

DrNN:

Yeah. I mean, that’s my bias. Vibrant Health started out with a technology that is basically ELISA based that was intended to be used for food allergy, for which my understanding is it’s a fairly decent test. Then they used basically the same technology for Lyme disease and for mold. In the experience of most of my colleagues, who’ve had the same experience I have, it doesn’t work anywhere near as well for those conditions. So again, I’m not casting aspersions, I’m just sharing my experience.

DrMR:

We can, we can certainly politely professionally disagree. So, you know, totally within the bounds here. Now regarding retesting. You mentioned a few toxins for each lab. Will you retest both labs or only the lab with the toxins that you find the given lab is better at assessing?

Speaker 4:

Exactly. So whatever lab gives me the most information, that’s the lab I’ll use for retesting. I don’t find it necessary to use both except on rare occasion. So if I get more information from Real Time, I’ll retest with Real Time. Same would be true for Great Plains. I don’t retest super regularly. I typically won’t retest for four to six months on a regular basis because it takes quite a while to see a shift in the mycotoxin levels in the body. It isn’t something that’s going to occur quickly,

DrMR:

But I’m also assuming, because you’re saying that in some cases you may not see any discernible improvement up until a year, that you are looking at that as at least a objective measure. If you’re not going to see this objectives change for awhile, you’ll, you’ll at least look at this to tell you you’re on the right track?

DrNN:

Exactly. You know, there’s an old adage, which I think applies here and was taught to me by my friend Sid Baker, who was well known in the autism world. He said, if you sit on two tacks and you pull one of them out, you do not remove 50% of the pain.

DrMR:

That’s a great analogy. I’ve heard that one before. Yeah.

DrNN:

And when we’re looking at mold toxin levels, depending on what lab we’re using, let’s say we have a tenfold over normal level of gliotoxin. If we cut it back to five fold, you really can’t expect a massive change in symptoms. Now, some people will feel better, but they still have a massive amount of toxicity in their body. So that’s one of the reasons it’s not reasonable to expect that people will really start to feel better until those levels start to come much further down than they originally start. The second big player here is that when you do your first test, the first test is what I call tip of the iceberg. Because patients with mold toxicity, as I mentioned, are detoxificationally challenged. They have trouble getting the toxins out of their body because they’re toxic. As they get better, you will usually see a rise in mycotoxin levels in the urine that does not correspond to them getting worse. So a second test, 80% of the time is going to be higher. Doesn’t mean they’re worse to me. That’s a sign that now you’re able to mobilize some of these toxins. Now you’re going to move along faster to get this out of your body.

DrMR:

Now, if you’re seeing someone who is in that 20% that decreases, are you assuming that’s a fairly low level or mild exposure? And so you’re just seeing them go right from level one to improvement.

DrNN:

No, you can’t quite base it on that. Remember, these mycotoxin tests measure, not only what’s in the body, but also how well the body is able to detoxify at that moment in time. And so you just have to put that together with the clinical improvement. As a general rule, as you see those levels coming down, you will see the patient improving, sometimes quickly but more often, slowly. But if you can put together the objective measurement from urine testing, coupled with clinical improvement, you know, you’re on the right path.

DrMR:

Gotcha. Okay.

Can Food Affect Mold Tests?

New Speaker:

Uh, what about foods skewing the test? That’s one of the things I’ve heard, uh, as a criticism levied against Great Plains is that foods may skew what you’re seeing in the urine,

DrNN:

Right? It’s always been a comment of the Shoemaker camp that the urine mycotoxin levels are meaningless because of the food that we eat. I did a little study with Great Plains last spring. We took eight patients. We first put them on a diet in which we eliminated all of the food materials that are known to potentially contain mold toxin. And then we measured their mycotoxin levels. And then we had them pig out on those foods for 10 days and remeasured their mycotoxin levels. Somewhat to our surprise, we discovered that seven of the eight patients, their mycotoxin levels went down, eating, supposedly moldy food. One patient went up slightly. Although this is quite controversial, and I know that this is an area that Dr. Carnahan and I disagree on as well. But from my experience, the vast, vast, vast, vast majority of mold that’s in people is not from food, is from mold-damaged buildings. That, I think, is the consensus of most of the people who are somewhat expert in this field.

DrMR:

Gotcha. That’s very helpful to know because it’s one of the many things I’m trying to sort through here. As I have a patient do a test, I’m interpreting the test and I’m questioning is this as accurate as I’m being told it is.

Speaker 4:

Well, let me give you another study that Great Plains published, not in a peer reviewed journal, but in the Townsend Newsletter last November. They put together a really good study of 82 patients who were controls and 103 patients with known mold toxicity. They measured their urine mycotoxin levels. The idea was, okay, if everybody is supposed to have mycotoxins, is that true? So for the 82 controls, the only mycotoxin level that was elevated to any degree at all was ochratoxin. It was, to be fair, elevated in 50% of the patients, but we can catalog it numerically. So the average patient in the control group had an ochratoxin level of 1.6. In the mold toxic patient group, the average patient with mold toxicity had a level of 18. Very different. So different that it’s not hard to distinguish a meaningful ochratoxin level for a non-meaningful ochratoxin level. No other mycotoxin in controls showed up to any appreciable degree. So the comment that, well, everybody’s got mold toxin, so it’s a worthless test. No, quite a few people, 50% have very small amounts of ochratoxin, but not the others. So if you’re picking up other urine mycotoxins we don’t see that in controls. I think that makes it clear. And again, this is the first time to my knowledge that this was ever been looked at at this type of a scale and I think it gives us some of these answers we want.

DrMR:

Right. Now, the range that Great Plains is listing as normal. How does that compare to the findings of the study here, where there seems to be some background noise with ochratoxin and healthy controls? Will the normative ranges delineate between the presumably normal background level of ochratoxin as compared to those who are actually exposed.

DrNN:

Yeah. So Great Plains changed the reporting sheet.

DrMR:

I noticed that.

DrNN:

They’ve changed it in response to this study and continuing ongoing measurements with the thousands of specimens that they do.

DrMR:

That’s encouraging.

DrNN:

So when Great Plains first came out, for example, they said that any level over four was meaningful. Now they don’t even list the number if it’s less than 7.5. So what they’re basically saying is if you show up on the test, the little part of their bar graph, and it shows up that you actively have some ochratoxin, they’re not even reporting levels that are that low. Meaning, they don’t want to confuse people with that issue. If you are putting together a patient’s clinical picture with those results, you could be pretty sure that you’ve definitely got mold toxicity here. So I think we were beginning to reassure clinicians that if you have positive tests and your patient have symptoms, and they have a history of being exposed to mold, you know, if it waddles like a duck and quacks like a duck, and it looks like a duck, it’s probably a duck.

DrMR:

Right? Well, yeah, I think it’s the constant objective of building a case. And I think one of the things that patients struggle with is they think that the doctor has this light switch, like ability to make a choice. Well, it’s either this, or it’s not this. I continually try to explain to my patients that I look at this as a range of probabilities and we’re going to go in the direction therapeutically of whatever is most indicated. These things are very hard to say yes or no completely, but again, you have levels of confidence or levels of probability.

DrNN:

Yeah, I agree. What I do with my patient visits is I attempt to give a patient my best idea of how comfortable I am with their diagnosis at the first visit. Having done medicine for a long time, I just tend to be honest with people. So sometimes I’m looking at someone and their clinical picture doesn’t fit their labs as well as I’d like, doesn’t fit their history the way I’d like. And I might be telling that patient, I don’t know, I’m maybe 30 to 50% comfortable with this diagnosis. And I’ll say, I know you’re not happy about that, but I need to be honest with you about my comfort level, with what I think I know. Most of my patients readily accept that and appreciate the honesty. On the other hand, if I’ve got someone with slam dunk mold toxicity, where they just got out of a moldy home, they and their whole family is sick. Their numbers are off the charts. I can say I’m 98% certain, you have mold toxicity and I’m really comfortable with treating it. So I think it’s fair to patients for us to be upfront with them from the beginning. Otherwise we run the risk of them saying, but you told me so and so. I never want to be in that position. My level of comfort when I communicate to patients, not because of my lack of experience or because I think I’m not an intelligent man or foolish or whatever, it’s because their symptoms are not aligning with the diagnosis at a level with which I’m comfortable. They need to know that.

Speaker 3:

Yeah. I mean, I think that’s incredibly well said. It’s important not to over promise and just be as honest as you can. I think that’s one thing that’s really important. Maybe just to quickly reiterate for clinicians, is that, at least in my experience, it sounds like your experience has been the same. Patients don’t tend to get mad at you if you’re just honest with them. And sometimes you’re not telling them what they want to hear is they want to hear. Yeah, I can help you 100% confident, but I think they’d rather feel like you’re being honest and than telling them what you think they want to hear.

DrNN:

If you’re trying to tell people what they want to hear, you’re going to be in trouble in a hurry.

DrMR:

Fully agreed, fully agreed.

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Mold Colonization & When to Treat

DrMR:

I want to transition over to, you mentioned the issue of colonization. We’ve definitely talked about that. I think Jill Christa’s podcast, she really did a nice job of explaining kind of her theory on colonization. I’m wondering if you have any thoughts that you think are very important to share regarding colonization. Maybe we can start here, where do you sequence that into these other aspects of treatment?

DrNN:

Well, it’s pretty difficult to tell whether someone’s colonized. There’s a couple of tests that can sometimes suggest that. For example, if you’ve got a stool test showing candida, if you’ve got an OAT test showing an elevated arabinose level, then you can get a pretty good idea that there is some candida in that person now. But otherwise our testing for colonization is totally inadequate. ENT’s have known forever that doing a nasal swab for fungus has a less than 10% yield, even in people with known fungal nasal sinus issues. So that’s not anywhere near accurate enough to tell us what’s going on. For measuring it in the gut, it’s even worse. So I basically approach this clinically, which is, I don’t know if my patient is colonized or not. So I will typically treat with binders for several months first. If they are responding rapidly to binders and improving quickly, I won’t add antifungal treatment at that point. Let’s see if they can heal completely with binders alone. In my patient population, That’s rare less than 10%. But when I started doing this work, when I wasn’t getting the referrals of referrals. It was not rare to see someone where you put them on some binders and six weeks later they’d come back saying, I feel much better now. And so when you do that, that’s when you go, okay, this actually does work. It’s great to see it work. In terms of colonization, if someone’s not improving, or improving minimally and their urine mycotoxin numbers are going up on binder treatment alone, I’m pretty sure they’re colonized. So at that point, depending on their symptom, I will either use nasal sprays for the sinus area or oral treatment for the gut area as the two primary areas of colonization.

DrMR:

Quick question there, are you looking for how you determine if you’re going to use one or both, if they have nasal symptoms as compared to GI symptoms or is there another way you’re doing that?

DrNN:

I usually start with the one where the symptoms are most prominent. So if they tell me they’ve got a long history of nasal congestion, chronic sinus infections, I might start there. If they have no symptoms in that area or few, And they tell me that they have alternating diarrhea, constipation, and bloating and gas and distention, then I’ll start in the gut. Many patients need both. In the research that Dr. Joe Brewer reported on, where he took two separate patients, 100 each that he originally started treating them with Amphotericin-B nasal spray, the other, he treated with nystatin nasal spray. He was using both nasal sprays and oral treatment on all and got 94% cure rate on the patients with amphotericin-B and 89% with nystatin. So, I mean, basically what that tells us is if we treat colonization, we can make a huge impact and help the vast majority of patients. He only followed those patients for a year. If we had taken that out longer than that, their numbers would be even better.

DrMR:

And is it fair to say when in doubt you’ll do both.

DrNN:

Yes. I will often do both when in doubt.

Thoughts On Indoor Air Testing for Mold

DrMR:

Sure. Okay. One of my final questions. I thought Amy Kapadia when she was in the podcast, made a great point that doctors shouldn’t be getting too involved with home toxicity, diagnosis, and remediation, but rather should use an indoor environmental pollution specialist and let them lead that charge. That seemed to make sense to me, knowing that there’s enough to know on the clinical end of things. It can be very hard looking at agar plates or ERMI testing to get a good read on what’s going on in the home. And perhaps a professionals should really be in charge of that. Would you agree, would you modify that?

DrNN:

I would modify it. I’m not an expert at home remediation, but I’ve had to learn a great deal about it because I deal with it so much. We hadn’t mentioned yet, and I’m really glad you brought it up. You can’t get well, if you’re living in a moldy environment or working in a moldy environment, it just can’t happen. You can get better, a little, but you can’t get, well, you can’t negotiate with it. Sorry, but that’s the reality of it. However, there are all kinds of mold evaluators and remediators some of whom are not as ethical as others. So number one, if you’re going to get an expert, an environmental engineer to look at your place it’s best if they do not have any involvement with the remediation company. Because if a remediation company does the evaluation, they will invariably tell you you’ve got a $50,000 remediation job, and they’ll be happy to do that for you.

DrNN:

So you want a clean evaluation. So on that, I agree with her. However many environmental engineers do not agree with each other about the right way to do this evaluation. For example, most use air sampling as their primary way of taking in a building. This is the least accurate way of doing anything. If you take air sampling, you’re basically taking a specimen of air from the middle of a room. The problem is that’s not where mold spores are, unless you’ve made it a major effort to stir them up. Mold spores are heavier than air. Stachybotrys, for example, is the heaviest. It will fall down within an hour of being exposed to air onto the floor. So it’s not in the middle of the room. The reason that air sampling is the gold standard of the building industry, and this is not make them look good, is that you can get a negative reading when there’s actually mold there. That allows landlords and building contractors to say, you don’t have mold toxicity and I can prove it. They’re proving it by measuring it where the mold spores aren’t. So if you’re going to do work with an environmental engineer, you need to know that what they’re doing is well thought out. They need to be doing ERMI tests and tape tests sometimes using pour plates and most don’t do that. It’s very, very difficult for patients to find people who know what they’re doing in this field, because a lot of the people who are doing the testing will not do an adequate job.

DrMR:

Are you finding some type of certification or training is an assurance, or is this more a professional by professional evaluation?

DrNN:

As a professional by professional evaluation. So that gets challenging. If you think doctors don’t agree on how to do this, wait until you get into a room with IEPs and have them talk about what works and what doesn’t work. You can see the sparks fly. Not only do they disagree with each other, they violently disagree with each other. So you’re correct that this is a new field. We are learning. We don’t have all the answers. We can give you the best answers we have. The good news is that what we’ve learned so far will help the vast majority of people we’re treating. And, of course, we want to do better. I’d love to be able to do this faster, but I don’t know how yet.

Indoor Air Professional Resources

DrMR:

Right. Do you have anywhere to point someone who’s looking for a good professional? Do you have any resources for them for an indoor environmental professional?

DrNN:

There are two that I use a lot. John Banta whose office is in Sacramento and Mike Shrantz. I think his office is in Arizona. They’re the two best that I know.

DrMR:

All right. Well, thanks for sharing. I’m sure people will feel better about working with someone who has been vetted, given all the disagreements in the field. Okay. I mean, that’s pretty much everything I wanted to go through. Obviously there’s a lot more here that we could dig into.

DrMR:

Is there anything else that you want to touch on?

DrNN:

I think that’s probably overload for most of our listening audience.

DrMR:

Thank you. I really do appreciate the nuance on some of these things because, like I said, I’m really trying to get a better handle on this. It’s always a challenge weighing that balance between being patient, but also not wanting to feel like I’m just getting on the placebo train of what is now kind of becoming a more en vogue topic. Again, just really appreciate your experience. Being able to speak to some of these things. Cause it’s definitely given me some clarity and I’m sure our audience feels the same way.

DrMR:

Will you tell us again about your book and anywhere else you’d want to point people to online?

DrNN:

Sure. So first of all, my book is simply called Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness

DrNN:

That would be the first resource. I do bunches of podcasts on line with a wide variety of individuals. If you Google it, it’ll pop up for you. My website, I have a newsletter, my old issues are available under the blog section of my newsletter. If you want to sign up for the newsletter? I’m happy to have you do that. That’s a start!

DrMR:

That’ll keep people busy. Well, Neil, it has been a real pleasure chatting. Thank you again so much for the work that you’re doing and taking the time to share some of your wisdom with us today.

DrNN:

You’re very welcome. Thanks for having me.

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