Dr. Michael Ruscio, DC is a clinician, Naturopathic Practitioner, clinical researcher, author, and adjunct professor at the University of Bridgeport. His work has been published in peer-reviewed medical journals and he speaks at conferences around the globe.
A New & Better Approach to Mold and CIRS with Dr. Kelly McCann
Chronic Inflammatory Response Syndrome (CIRS) is an inflammatory response in the body that may affect multiple systems—like digestive, respiratory, nervous, musculoskeletal, pulmonary—and is generally brought on by environmental exposure or infection. The most common trigger for CIRS is mold and mycotoxins from buildings with water damage. If you see health changes after a water leak, moving to a new residence (or office), or even after a brief exposure like a hotel stay, consider mold and CIRS a possibility. Tick-borne illnesses can also impact CIRS. The ERMI test may be useful to detect mold in your home. Some CIRS sufferers may be able to resolve their symptoms after a supplement protocol and ending exposure to the triggering toxins. Others may need to try further measures such as limbic system retraining.
Dr. Michael Ruscio, DC: Hi, everyone. Welcome to Dr. Ruscio Radio. This is Dr. Ruscio, and today I’m here with Dr. Kelly McCann. We’re going to be talking about CIRS. And I’m very excited to get into this whole topic of mold and how it might be causing this Chronic (immune and) Inflammatory Response Syndrome. So Kelly, welcome to the show.
Episode Intro … 00:00:40 What Is CIRS? … 00:01:38 Possible Indicators of CIRS & Mold Illness … 00:05:02 How Common Is CIRS? … 00:13:20 Testing for CIRS and Mold … 00:16:01 Treatment Protocol for CIRS … 00:24:55 Product Recs for CIRS Supplements … 00:31:30 Travel & Protecting Yourself From Toxins … 00:36:41 How Long to Recover From CIRS? … 00:38:10 What to Look for in a CIRS Expert … 00:43:50 Episode Wrap-up … 00:49:38
Dr. Kelly McCann, MD: Thank you. So happy to be here.
DrMR: Your name came through the grapevine, and the topic of a talk you recently gave grabbed my interest. It was, essentially, CIRS and CIRS treatment protocols are old news and there are some updated ways to think about this. As someone who’s struggled with some of the elaborate nature of some of the CIRS testing and treatment, I thought this potentially could be a breath of fresh air. But I know very little about what you espouse here. So I’m very curious to dig in, being a fresh perspective on your position here. I’m very much looking forward to digging into some of that.
What Is Chronic Inflammatory Response Syndrome (CIRS)?
Could you just briefly define CIRS for people, if they’ve never heard that term before?
DrKM: Sure. We call this Chronic Inflammatory Response Syndrome, or CIRS. The idea is that there are many systems that can be manifesting an inflammatory response because of a certain environmental exposure, or infection that somebody might have. For example, the biggest CIRS trigger for most people is mold and mycotoxin exposure from water-damaged buildings. And in a certain group of genetically-susceptible people, this will trigger an inflammatory response that affects many different systems in the body, from the GI tract, brain, and nervous system, to pulmonary and respiratory tracts, and inflammation in the musculoskeletal system. We call this CIRS.
DrMR: Okay. Now, I’m curious to get a little bit about your background, how you got into this field, and what your current practice looks like. Can you give us the short story there?
DrKM: Sure. I am a perpetual student. So I got an undergraduate degree in music, and then had to go back and do post-baccalaureate work for my premed and went to medical school in New Orleans at Tulane. Then simultaneous with that, I got a Master’s in Public Health. I went on to get a dual residency in internal medicine of pediatrics. And then after my residency, I moved to Oregon. I was exposed to mold, although I didn’t realize it at the time. Then I moved to Tucson. Did the University of Arizona’s Program for Integrative Medicine as a residential fellow. So I lived in Tucson for two years and studied with Dr. Andrew Weil.
After that, I moved to California and opened my practice, but continued to study. So I did medical acupuncture training. I did the Institute for Functional Medicine training, their fellowship. Then studied for a year with Dr. Walter Crinnion, in environmental medicine. And at the end of my training with Dr. Crinnion, one of my colleagues had mentioned Ritchie Shoemaker. So I took on the task of learning about mold. I started treating some of my patients for CIRS. When they didn’t get better, I realized that I needed to learn about Lyme disease, and started treating both Lyme and molds. I’ve since continued to learn more about that. I’m actually learning more about and treating patients for mast cell activation as well.
DrMR: Great. Pretty broad offering there. So there are a number of things I want to try to dig into more.
Possible Indicators of CIRS & Mold Illness
One of the first I always try to lead with is—so that the audience can perk up if the symptomatic presentation of CIRS sounds like them—what are some of the most common signs and symptoms? I’m sure, at this point, the audience is starting to realize there is a whole lot of overlap between many different conditions, in terms of how they present. So I always try to refine that question to, “Are there any symptoms that are more associated with this?” Because I’m sure there are maybe 20 or 30 symptoms that we could say. Are there some key things that if someone’s had this in the past—obviously if they’ve been exposed to mold, that would flag—any key things from their history, or their symptoms, or any other things that you look for as flags, as indicators, that this is something that you should look more deeply into?
History of being exposed for long periods of time to visible mold, musty smell, water damage or leaky building
Hotels, hospitals, schools, homes, etc.
Change in symptomatology – healthy person turning sick after moving to a new place
Neurological or cognitive changes
Light or sound sensitivity
Respiratory or sinus changes
Increased urinary frequency
DrKM: Good question. Yes, there’s a tremendous amount of overlap, which makes doing this work both at the patient level (who’s trying to advocate for themselves) and the practitioner, really tricky. One of the hallmark features is fatigue. That could be caused by so many different things. But in terms of CIRS, certainly a history of being around visible mold, a musky odor, a water-damaged building where there’s been a water leak, at any point in the history of the building, makes me suspicious about a possibility for CIRS. So, certainly high on my list of questions.
That could be because there’s a faulty pipe, they had a slab leak, or something like that. Even if it’s been “remediated”, I will still be suspicious if they have lots of symptoms. So the presence of water damage or a water leak. And the statistics are that 50% of the homes in the US have had some water damage and a leak. Then, if we look at the other buildings that we spend our time in—office buildings, schools, hospitals, hotels—the statistics increase to, like, 85%. So most of these buildings have had some sort of water damage. And if we spend enough time in water-damaged buildings, we might get sick.
DrMR: Let’s expand on that a little bit. And I want to tie a little bit of my personal experience in here. I’ve noticed that really large hotels, it’s almost a 50-50, where if it’s a time of year when it has to be air-conditioned and there’s no air circulation, I will notice I don’t feel well in those buildings. Sometimes it makes me feel like I’m crazy, because there’s almost never an odor. There does seem to be—at least in my experience—something to these larger buildings (like you’re saying, hotels and hospitals) and I note that kind of reaction in myself. So can you expand upon that a bit?
DrKM: I do believe that sick building syndrome is predominantly driven by a water damage situation. To be fair to the mold, haha… it’s not just about mold. The molds produce mycotoxins. There’s also bacteria that grows. There are a lot of cell wall fragments and other materials that are in this toxic soup that exists in water-damaged buildings. So it’s possible that there are these other inflammagens and inflammatory mediators that exist in the water-damaged building, the hotel, etc. When you have that many showers, toilets, and sinks in a place like a hotel in particular, there’s destined to be some water leaks over time.
We build with building material that’s basically paper. It’s wood, it’s particle board. So that’s fuel for these molds to grow. It’s really unfortunate. And I would point out too that if people find themselves experiencing symptoms of fatigue, headaches, cognitive changes where their memories seem impaired, or they’re having what is called brain fog when they go into certain buildings like that, they should be suspicious of the possibility of CIRS as a potential diagnosis. Also, chemical sensitivity is often associated with CIRS too. So if somebody has an increase in their chemical sensitivity, that may be cause for concern to be evaluated for CIRS and mold exposure.
DrMR: Now, without getting too much into the treatment just yet, for people who may have noted that—because I would estimate a fair subset of people have remarked at a similar feeling at these larger buildings and sometimes noticed that re-circulated air is a problem—is there something outside of your over-the-counter antihistamine? Is there something for when you know you’re going to be traveling, that you can keep in your pocket or your bag to help quell these symptoms (since you can’t change the environment) as a palliative measure?
DrKM: That’s a good question. And I definitely want to touch on that more when we’re talking specifically about treatment. But one of the things that I would suggest for those highly sensitive people is a little personal air purifier that you can get online. Literally Google “personal air purifier.” It looks like a little box that you can wear around your neck and it creates some air exchange.
At one point, I did personally develop some real heightened chemical sensitivities and I couldn’t go into Bed, Bath & Beyond, for example. I couldn’t go into Home Depot, even, or the mall. God forbid, I go the mall at Christmas time with all the perfume counters without my little personal air purifier right in front of my nose, in order to help me tolerate some of those smells. So that would be one possibility for the people who are hypersensitive. For the rest of you, I’d rather defer that to when we talk about treatments—because there are some really simple things you can do in addressing these—if you don’t mind?
DrMR: Yeah, no, that’s why I phrased that as such, because I was wondering if there’s a quick thing. We’ll come back to that in more comprehensive nature in a moment. Okay, again, the symptoms here may not be incredibly clear-cut. But you laid out a couple things there to be on the lookout for. Anything that you want to add to that?
DrKM: Yeah. I can run through the list. I find a lot of people with mold exposure as some of their triggers, it’s really a change in symptomatology. So if somebody has been healthy all their life and they move into a new place, and soon after they move into a new place, they develop all these symptoms, that’s cause for concern. Neurological symptoms, cognitive changes, light sensitivity, sound sensitivity, respiratory issues. A couple of the ones that tend to be more on the mold side would be ice pick pain or static shocks. Increased urinary frequency, temperature dysregulation, excessive thirst. Going to the bathroom at night, when that wasn’t something you weren’t doing before. Sinus symptoms or respiratory symptoms. So there’s a whole litany of symptoms, but those are quite a number of them.
How Common Is CIRS?
DrMR: And how prevalent would you say this is? I know this might be a hard question to answer, at least from a evidence-based, published research perspective because there may not be great research looking at this. But I’m assuming we have at least some data to help answer this question. So what do you think that looks like?
DrKM: Oh dear. I think that my patient population is probably a little skewed. I’m not seeing the general populace. I’m seeing the more complicated patients. Dr. Shoemaker had talked about prevalence of a gene variant that predisposed people to have problems with mold, mycotoxins, and these biotoxins. Many of my colleagues who treat mold and Lyme disease have found that his original work didn’t really stand up to the test of time, in that the genes that he classified as “dreaded genes” didn’t necessarily have a worse presentation. So when I originally did hundreds, if not thousands of these gene variant tests, I would say 90% of my patients had these gene variants.
I think a more recent statistic, for somebody who actually did some number crunching of their own patients, was probably more like 75%, 80% had some variant of the genes that he’s talking about. But I don’t really think that that many people are affected in the total population, for example. But with Lyme disease—which is another whole topic that can trigger a CIRS-type picture—I think the numbers produced by the CDC are underestimates. I think the most recent estimate was about 400,000 in the U.S., with 100,000 of those people being in New York state alone. That’s still an underestimate. They’re not really acknowledging other Borrelia species, the prevalence of Bartonella, for example. So I think getting a handle on who’s really being affected by CIRS from water-damaged buildings will be very, very difficult to do. Nobody’s looking at that.
Testing for CIRS and Mold
DrMR: I think that’s fair. Okay, one of the things that I think is a quandary many clinicians struggle with is, how to find an accurate objective measure. In my chief area of focus, GI, you see that there are tests available and I think we have pretty darn good data here. So in GI, I think we’re much more fortunate than you are in CIRS and in Lyme. Even in the GI camp, where the data’s fairly robust, there’s still not the ability to look at a lab test with high confidence and correlate that to a condition a patient may have, or to predict, if they’re treated for a given lab marker, that that will have a positive predictive value in terms of how likely someone is to respond.
So I ask this question understanding that there’s not an easy answer, but it is such an important aspect. How do we try to get a read on this objectively? Or perhaps, you go on this more empirically and subjectively? But how are you looking at testing to help elucidate some of this?
DrKM: Great question. Again, Dr. Shoemaker had a whole series of inflammatory markers and unusual hormone tests that many practitioners looked at for years, myself included. Then there were problems with getting some of the testing done. It had to be sent on ice, etc, etc. So I really moved away from utilizing a lot of his CIRS markers. There are a couple that I think could hold some value, such as transforming growth factor beta one. But it has to be processed at Cambridge Biomedical. It can’t be processed at other places. So it’s still a little problematic.
I have turned more to using urine mycotoxin testing, recognizing that that has some challenges as well. We are looking at an excretion test in urine mycotoxin testing, meaning that the patient has to be capable of excreting these mycotoxins. In very, very sick patients, I have found that their ability to excrete is diminished. So we can look at a marginal test, and it’s not that they’re not exposed, or have a high burden of these mycotoxins. They just can’t get rid of them. So we have to take that with a grain of salt when we’re interpreting them. But at this moment in time, it really does appear that these mycotoxin urine tests are probably the best thing, in addition to a good history, that I have, to really identify the problem in the person. And then I’m asking patients to do some testing in their homes, or have a professional inspector come out and take a look also.
DrMR: Is there a certain test or lab in particular that you’re using for the urine mycotoxins?
DrKM: There are two primary mycotoxin tests out there now. There’s Great Plains, which has a mycotoxin test. I should say, neither of these tests are covered by commercial insurance. The older test that’s been around longer is the RealTime lab test. That one is actually covered by Medicare. So I do tend to order it on my Medicare patients. It costs $699, if it’s not covered. The Great Plains test is $299. I think perhaps Vibrant Health might be offering a mycotoxin test, but I haven’t used that at all yet. Then there’s another company called TEC Biosciences, that is hoping to offer a mycotoxin test soon. That company will also be doing environmental toxicant testing.
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DrMR: Regarding the history, as an example, in IBS research, we do have validated IBS questionnaires. I know there are some general environmental toxin questionnaires. Do we have the luxury of having some type of validated CIRS or mold exposure symptom inventory that we can use with patients?
DrKM: There was a CIRS symptom questionnaire that some of the original Shoemaker docs developed. I can’t say that it’s validated and so…
DrMR: You don’t find it valuable?
DrKM: I find it valuable when I’m doing a review of systems, if they have a lot of symptomatology. Then I’m asking more questions about home, etc. But we don’t really have a validated questionnaire, no.
DrMR: Okay. Well, hopefully one day, someone will have that… What about the ERMI test? That’s something that Jill Carnahan mentioned when she was on. Have you fooled around with that at all?
DrKM: I have. I do encourage my patients to utilize an ERMI test. I know that there is some controversy amongst the indoor environmental professionals on whether an ERMI test is a valid test or not. I happen to like having a number. But a test is only as good as the sample. So for example, if you’re doing the cloth test, you’re collecting dust in your living room, and the water damage is in the kitchen, and they’re on opposite sides of the house, you might have a falsely low ERMI score and make the assumption that it’s not a problem. So collecting the dust, whether it’s with a vacuum, or the cloth, and then being able to interpret the information that you’re getting back, can be a little tricky.
ERMI tests are not inexpensive and they add up. Then getting a decent mold inspector in there also can be very pricey. Part of the reason that I prefer the ERMI is because I’ve just had such frustrating results from indoor environmental people doing exclusive air testing and saying, “Oh, the place is fine.” The mold tends to be very heavy, particularly Stachy , and it’s not floating around in the middle of the room: it’s behind the wall, it’s on the floor, it’s behind the wall where the pipes are usually, if that’s where the problem is originating from. So doing an air test is not helpful and an ERMI might be more helpful.
DrMR: That’s good to know. Any other tests that you like? Or does that take us through the list?
DrKM: Getting a mold inspector in, somebody who’s actually willing to look behind the wall, I find the most useful. Somebody can also do that too with an ERMI, where they take the plate off a light switch or an electrical outlet, and swab inside the electrical outlet with their cloth, which should be contiguous with the inner part of the wall. That might be more useful. A HERTSMI test is a condensed version of the ERMI test. The ERMI is 26 bad molds and 10 good molds, and you get a score. The HERTSMI test is just five “bad” molds and it’s generally half the price. So sometimes people will do the HERTSMI.
Treatment Protocol for CIRS
DrMR: Now, what about treatment as a test? Certainly this is something that I think can be helpful in a number of areas. You treat a patient as if they have a condition and if they respond, it tells you that they likely had that condition. It’s not always a tenable recommendation. Is that something that you’ve ever fooled around with?
Administered simultaneously unless dealing with a sensitive patient
DrKM: Because the way I treat it is fairly non-specific and broad, I don’t tend to use that as a diagnosis. If we were talking about Lyme disease… I’m giving somebody a tincture for Lyme disease and they have a reaction (as in the Herxheimer reaction) to that tincture, then yes, that would reinforce the thought to me that that person has that disease. If they didn’t have a Herx reaction, they’d be less likely to have that disease, if that makes sense.
With mold, the treatments are much more non-specific. For example, if I chose to use binders to bind up the mycotoxins in the GI tract—helping to escort them out of the body so they don’t get reabsorbed—binders are very non-specific. The pharmaceutical binders that we use are things like cholestyramine or Welchol, which is the pill version. These are old time cholesterol-lowering medications and they, again, tend to be non-specific binders that can bind a variety of other biotoxins. So that wouldn’t be helpful as proof.
DrMR: Hmm, okay. So let’s get into some of the protocol now. Is there a significant amount of change that you’re recommending, compared to your standard, traditional Shoemaker CIRS treatment?
“Suffering from Mold Toxicity or CIRS and not able to heal? In this episode, we break down the signs, symptoms, and how to approach a treatment protocol that resonates with YOU. Sick building syndrome is a thing. You’re not crazy!”
Absolutely. For example, the Shoemaker protocol is very dogmatic. You have to start with cholestyramine. You have to treat the MARCoNS and then you go down the steps of treating the different biomarkers. I do tend to use binders, I think binders are important. I tend to avoid cholestyramine. I think it tends to block circulation. I prefer not to use that, unless I really have to or people feel like they need it. I use other binders, things like activated charcoal. Different kinds of clay, such as bentonite clay. Chlorella can be very effective as a binder as well. There are a number of products out there that are combo products, that work well for binding. The purpose of that is to bind any of the mycotoxins or biotoxins that happen to be in the GI tract so that they don’t get reabsorbed. Binding is a critical part of the treatment protocol, it’s just not required to be cholestyramine. So that’s one difference.
Another big difference is, I also use glutathione. Glutathione is a critically important antioxidant. It is important for phase I and phase II detoxification and there’s actually been some literature to support that it helps with mold and mycotoxins. So I do use glutathione in my patients. And then probably the biggest difference between me and more conventionally trained Shoemaker folks is the use of phosphatidylcholine. I love PC. Happens to be one of my favorite go-to supplement supports for a whole host of things, but one of the reasons it’s so helpful in CIRS and mycotoxin illness is that the mycotoxins are very, very small. They can slip in and out of a cell membrane, and the PC is the building block of the outside of the cell membrane. So we can use phosphatidylcholine to literally clear out any mycotoxins that are in the cells.
DrMR: Great. So are these three the cornerstone of your treatment? A binding agent, glutathione and phosphatidylcholine?
DrKM: Yes, and then I also encourage people to do sauna, as often as possible. Sauna has been shown to be helpful at getting out mycotoxins and getting out many other environmental toxins, as well. We all have, inside of us, persistent organic pollutants such as DDT, DDE, PCBs. These things can be mobilized through sauna and certainly some of the others, solvents, etc. can be mobilized too. So sauna is great for all different sorts of support of detox. If patients are willing, I will also encourage them to do a couple enemas and/or colonics. I found that to be tremendously helpful.
DrMR: Are you sequencing these in some type of order? Are you administering these at the same time?
DrKM: Often they’ll get administered simultaneously. I don’t feel the need to do one and then the other. Usually we start one thing at a time and give people a chance to make sure that they tolerate it. One of the challenges with a dogmatic protocol is, it doesn’t allow for variability of sensitive patients. Many of these people get incredibly sensitized to things and we have to go really slow and we have to treat them with kid gloves, which does require a more stepwise approach to things. We may use tiny, tiny doses with these complicated folks.
DrMR: Yeah, I end up doing the same thing in the clinic. You have your ideal protocol, but in sensitive patients, you’re going to start things one at at time, so as to be able to pinpoint any reactions and make some modifications for the individual. So, absolutely. I think any experienced clinician is probably nodding their head in agreement.
Product Recommendations for CIRS Supplements
Are there any particular products that you like for each one of these? Because I know people will be asking, “Is there a certain dose of binder, glutathione, or PC that you’re using?”
DrKM: Sure, let me talk about PC first. I do prefer BodyBio’s PC. I find that the most effective. That was really the product that got me on my feet, that cleared up my mold and my Lyme symptoms for me personally. That’s the one that I continue to take. If I get really lazy and miss a couple weeks, I will get some of my symptoms back. So that’s the one that I take. There are other reasonable PC products out there. So people can experiment, but that’s definitely the one that I prefer myself.
DrMR: Is there a certain dose that you’re recommending for that?
DrKM: Good question. So it comes in a liquid and a capsule. Most of the time I will start people on a lower dose. When I first started myself, I gave myself a tablespoon, which is a pretty big dose. Probably, let’s say, six grams… I can’t remember off the top of my head. But a decent-sized dose. I would say I had a little worsening of my symptoms. I was mobilizing too many things at once. So I tend to be more cautious now with people. I start them at like one or two capsules. 1300 milligrams is two capsules of the liquid BodyBio PC.
Then, depending upon sensitivity levels, I might start at half a teaspoon. I might start them at an eighth of a teaspoon, if they’re super sensitive, then ideally working them up to a tablespoon. I find it untenable to ask people to take more than six or eight capsules a day. They’re not quite getting the same doses in the capsules that they would with the liquid. But yeah, goal dose would be—if they can afford it, because this stuff is pricey—the tablespoon a day. The one thing I will say is there’s a lot of PC out there that’s just junk. You can’t walk to your local grocery store or health food store and buy some PC. I think you really have to make the investment with that stuff.
DrMR: Gotcha, that’s very helpful. And then where do you want to go next? Binders? Glutathione?
DrKM: We can do glutathione next. I use two professional products. One is a Researched Nutritionals liposomal glutathione. The other one is ReadiSorb, which is also a liposomal glutathione. I allow my patients to choose. One is kind of a flavored gel, the other one is a liquid. Glutathione is not tasty. It’s a sulfur-based compound. I also like Wellness Pharmacy‘s capsules of glutathione, as another alternative. Glutathione really does need to be liposomal in order to be absorbed. I think, again, you really want to make sure that you’re getting a decent quality glutathione product. This can be expensive. It’s a tri-peptide and it’s usually broken down by the gastrointestinal system, so it does need to be liposomal.
DrMR: Is there a certain dose you’re having people target?
DrKM: I can’t remember the milligram dose. Usually like a teaspoon a day is pretty reasonable. You can push the doses certainly for that, if they tolerate it.
DrMR: So, teaspoon per day, maybe a little bit higher, essentially. Is that about one serving in most bottles? Is that what that breaks down to?
DrKM: Yes, I think that’s the one serving on those bottles.
DrMR: Okay, that works. Then what about the binders?
DrKM: So for the binders, honestly, any old activated charcoal will work reasonably well. I happen to use Integrative Therapeutics, but I’m sure there are other decent quality products out there. In terms of combo-products, Bio-Botanical Research (which also makes Biocidin) has a nice combo product called GI-Detox that I like. There’s a newer company on the block that’s a Lyme company called Return Healthy, that makes a really nice binder blend. I do like that product a lot as well.
Then in terms of chlorella, I happen to use the BodyBio products. But there are other good companies that make chlorella. In terms of clays, that’s been a little bit harder. There is some problem with getting non-contaminated clay. It’s contaminated with lead, so again, moving a little bit away from the clays, although some of those combo products do contain some clay in them.
DrMR: Gotcha. All right, so that takes us through the protocol.
Travel & Protecting Yourself From Toxins
You were also mentioning some things that people who are traveling can use—purifiers, or any other things that you’re finding helpful—for palliative, you-know-you’re-going-to-be-exposed measures?
DrKM: Yes, so in those instances, I think binders, the personal air purifiers, the PC. PC is great for clearing out so many different toxins that I definitely travel with that one. There’s a room-size air filter that I recently learned about called Aireox, that is a carbon filter. Then for highly sensitive people, they have a coconut version. That would be something you could keep in your car. It’s small enough that you can bring it with you. So there are some options there too.
DrMR: Great. And with the travel protocol, do you recommend a normal dose? Do you recommend going a little bit higher for these acute exposures?
DrKM: Good question. That depends on where the person is in their process. If you’re generally pretty healthy… if I was taking PC, I’d probably take six capsules a day. If you have travel glutathione, I’d take the glutathione too, and then a couple of binders and see how that works for you.
How Long Does It Take to Recover From CIRS?
DrMR: Okay, great. And is there a certain time frame in which someone, or most people, would expect to see a response? Is it a week, four weeks, a couple days? How does that typically play out?
DrKM: Response, in terms of getting better?
DrMR: Yeah, so not regarding the acute exposure protocol. More if someone’s starting this treatment regime, when could they expect to see their symptoms start to respond?
DrKM: Great question. Really tricky question too. So part of this conversation that we haven’t gone into at all is, what do you do about the house? Are you still living in a moldy house? Have you moved, and moved all your moldy stuff with you? If you’ve moved and moved all your moldy stuff with you, we might still have a problem. If you’re living in your currently moldy house, we might still have a problem. For some people, they can potentially get better maintaining their residence in that moldy house. For some people, they literally have to get in their cars naked and drive away and leave all their stuff behind, and that’s the only way that they’re going to begin to improve. It depends in part too, how long have they been in the moldy house? How sick are they? How many other comorbid conditions do they have? Do they have Lyme disease, Babesia, mold, and toxic metal exposures?
So I’d love to say, oh yeah, some people can start to get better in a couple of weeks, moving out of the mold and starting on the protocol. Some people, it might be a very slow, steady improvement. And then for some people, they can really, really struggle, whether they’re in the place, or a new place, depending upon how long since they’ve been sick. I do use IV phosphatidylcholine with people sometimes too and I have found that to be very effective.
But it’s tricky. I can’t guarantee that you’re going to get better in a month or even six months. It might take some time. Some of that is because this has been incredibly traumatic for people and so perhaps they need to engage in some limbic retraining, such as Annie Hopper’s work where she’s helping people retrain their limbic system, which has become hypervigilant now. Another great limbic retraining program is the Gupta Programme.
DrMR: They’ve both been on the podcast and thought they did a fantastic job. I would encourage people listening to check them out, if they feel like they’re in this chronic stress response (not that we’re talking about chronic stress response here specifically, but if they feel like they’re struggling with chronic illness and they may need a little bit of support other than physiological, or more so psychological). They seem to be pretty fantastic, at least from everything I’ve heard from other people who’ve been using those.
Heidi Turner and I—who’s been on the podcast previously—were just having a conversation about this for MCAS-type patients. She’s found that to be a very helpful addition to some of the programs. So I would second that, and I would encourage people to look into those previous podcasts we’ve done, if this resonates with them.
DrKM: Yeah, I had a patient who was not able to leave her home. She was eating probably five foods and hyper-reactive to everything. She had Lyme, a moldy house, MCAS, and the whole thing, and she did Annie Hopper. Within five months, she could eat 50 foods, her relationship with her husband improved dramatically, and she just felt so much better about the world. She hadn’t changed her environment at all. So it is possible to get better without having to throw out everything that you own, for some people.
DrMR: I think that makes fantastic sense and something to consider, if you’re a patient who’s been floundering, you’ve been from doctor to doctor, and you’ve gone through various different treatment regimes. I think this is something that a subset of people really need to give some attention to. So I’m glad you mentioned that. It’s very, very timely, because we just had those two podcasts there, only a few weeks ago.
DrMR: Now, here’s another question that may be harder to answer, but I would appreciate any candor that you’d like to add. And I’ll fill in a little bit of my perspective on this. How can a patient, who is looking to maybe work with a doctor in this realm and the realm of CIRS, tell if that doctor is objective and someone they should work with? Or if they’re someone for whom everybody who comes in gets treated for CIRS?
One of the things that I look for is the reasonability of a provider. You said something earlier about the Shoemaker protocol being a bit dogmatic. If I’m being fully candid, I really didn’t feel much appeal to his approach when I’ve listened to some of his interviews. I’m sure he’s a perfectly nice person, but professionally, when things require a copious amount of testing, and a highly involved, highly rigid protocol, it just tells me that—I’m not saying this is an exclusive rule—oftentimes the person making those recommendations is a bit overzealous, a bit dogmatic. They’re making things harder than they have to be.
I’m always trying to find a way for an audience to find their way through that. Because, gosh, what a travesty to spend months and probably thousands of dollars only to figure out that that wasn’t needed. It’s hard enough sometimes as a clinician to pair the right treatment with the right patient. But if you’re also being dogmatic, the chances go from hard to almost zero. So, do you have anything that people should look for, or should look at as red flags, to say this person might be using their hammer and everything is a nail kind of situation?
DrKM: That’s a really great question. My advice to patients out there, who are looking to advocate for themselves, is to continue to educate themselves as much as possible about these different clinical conditions, so that they go armed to a prospective provider’s office with as much knowledge and understanding as they can manage.
On a certain level, they have to be willing to listen to their own intuition about what that practitioner is saying and then really observe how that practitioner is treating them. Is the practitioner listening to them? Are they taking good history? Are they allowing them to participate in what they want to do? I will never tell a Lyme patient, “You have to do blah blah blah.” I am going to have a dialogue, give you five different options, and then you tell me which one resonates with you. And we’ll try that first.
DrMR: It’s funny you say that, because I do that same exact thing with many patients. I give them their options and I ask what resonates. That’s great.
DrKM: So that would really be my advice: if that practitioner doesn’t resonate with you, then that’s not the right fit for you. It doesn’t mean that that’s a bad practitioner. It just means it’s not the right practitioner for you. So you want to find somebody that you can partner with. You want to find somebody who has an intellectual curiosity and desire to see you thrive and flourish without having a vested interest in anything other than that.
If a patient walks in to see me, I don’t care if they have Lyme, molds, environmental toxins, mast cell, or an autoimmune condition. I care about getting them better without the label. We use labels because that helps us figure out how to treat them, but honestly you can’t really hurt people with charcoal, glutathione, and PC. So whether they have environmental toxicants, Lyme disease, or mold exposure, they can do pretty well with those three things. That’s not what I give everybody. But ultimately, I think it has to be the patient being cognizant of their own intuition enough to find somebody that really resonates with them.
DrMR: Yeah, I think you painted a very nice picture. I’ll just shade in a few things there with that sketch that you made. That might look like a provider who is unwilling to compromise on testing, even if you have limited finances. They’re telling you, “Well, it’s got to be x, y, z and a, b, c, d, e, f, g testing,” and you look at the bill and it’s six or seven some thousand dollars. You may have reported sensitivities in the past, and they seem uninterested in being cautious with how they treat you, and just want to push you into their standard treatment protocol rather than being one to make some modifications.
Or they may dismiss certain questions or thoughts you have. Like, you may bring in something from this podcast saying that you heard that certain Shoemaker protocol testing may not be fully needed and the provider looks at you like you insulted them (even though you articulated your question tactfully).
That’s the other side of this… then all those may be indicators that this person may not be the right fit for you. So yeah, I think that was a great answer. Thank you for that.
DrKM: You’re welcome. My pleasure.
DrMR: Now, I want to ask you for closing thoughts here in a moment, but is there anywhere where people can track you down on the Internet? A blog, website?
DrKM: Sure. The best website for me right now is thespringcenter.com. That’s my practice in southern California. I have not yet made a blog, a little behind the eight-ball on that count. But I’m working on that. I was also on the Toxic Mold Summit. So if people want to find me there, I had a nice conversation with Margaret Christensen at the Summit. I think there are some other professional lectures that I’ve given that are out there on the Internet somewhere. Hopefully they will be eventually found on my website. That’s all that’s out there right now.
DrMR: Websites and blogs are more work than I think people understand, so I understand it not being something that you were able to just pop up easily. And then, any closing thoughts you want to leave people with?
DrKM: Yeah, I would just encourage people to really be their own advocates and recognize that no practitioner is going to heal them. They really have to do their own work, keep at it, and focus on being hopeful that they are going to find a solution and get their lives back.
DrMR: I think that’s very well said. Just to add to that, I know on the podcast we’ve discussed a number of things that, in my opinion, have been a bit challenging to find good answers regarding and CIRS has been one of them.
I think the conversation with Jill Carnahan was excellent, where it didn’t seem to be as robust as your standard CIRS treatment. I feel today that Kelly has expanded that even further. It’s great to see this picture start to come into focus, where you don’t have to do testing at three, four, five different labs and have some samples special-tested on ice and spend thousands of dollars.
Now you may certainly elect to do that in certain cases. But again, I think what’s nice about what’s coming into focus is there may be a way of doing this that’s more focused, more directed, that doesn’t require the extensive array of assessment. It doesn’t require a highly rigid and highly involved protocol that treats all these different lab findings and does so perhaps partially to the exclusion of the patient.
So this is starting to look, thankfully, like there are people out there who are doing this the way I prefer, which is a bit more patient-centered, cost-effective, and focused. Hopefully, for our audience, you’re starting to see that picture also come into focus. You’re armed with some knowledge and some questions to vet if the provider you’re thinking about working with seems to be of this persuasion or not.
Kelly, I can’t thank you enough for that, because I do think this is an area that people need good answers. And unfortunately many of the answers circulating are a bit more robust than I think most people are motivated to pursue, or financially able to pursue. So again, thank you. This has been a really fantastic conversation and I deeply appreciate it.
DrKM: You’re welcome. I’m so happy to be able to participate with you. I did have one last thought. For people looking for practitioners, who might be more in alignment with some of the things that we’ve been talking about today, there is a new professional organization called the International Society For Environmentally Acquired Illness, or ISEAI. That will be a place for patients to find practitioners, and also for practitioners who are interested in learning how to treat these environmentally-acquired illnesses with more compassion and acknowledgment for different ways of doing things. I would encourage that as a resource also.
DrMR: Beautiful. Yeah, it always helps to have somewhere to go. Thank you for providing that also.
DrKM: You’re welcome.
DrMR: All right, Kelly. Thank you again, it was a great call. I really appreciate it.
Dr. Ruscio is your leading functional and integrative doctor specializing in gut related disorders such as SIBO, leaky gut, Celiac, IBS and in thyroid disorders such as hypothyroid and hyperthyroid. For more information on how to become a patient, please contact our office. Serving the San Francisco bay area and distance patients via phone and Skype.
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