Today I spoke with Dr. Jill Carnahan and we had a great conversation about mold, mycotoxins, and CIRS (chronic inflammatory response syndrome). Oftentimes this topic is made out to be overly complicated, but today’s conversation pierced through to the practical core on this issue. This is an important topic to be aware of for those who have not responded to other therapies.
Dr. R’s Fast Facts
- Most common symptoms
- Fatigue, cognitive problems, respiratory involvement
- Other symptoms
- Brain fog, memory impairment, word searching
- Weakness, achiness, joint pain, morning stiffness, and cramps
- Frequent urination, increased thirst
- Numbness, tingliness, and unusual skin sensations
- Congestion, shortness of brief, nasal stuffiness, red eyes, blurry vision – very common
- Sharp and sudden increase in weight
- Gut symptoms: loose stool, diarrhea, constipation
- Where does this fit in with other health interventions?
- After diet, lifestyle, and gut health
- After simple thyroid evaluation
- How to diagnose
- A good questionnaire of history (#1) and symptoms. Musty odors, previous water damage, illness started after moving…
- Ermi from micometrics for testing dust – one of the best starting tests. Less than 2 is safe.
- Environment testing is difficult
- Lab testing
- Genetics: HLA DR, very helpful. Available through LabCorp/Quest. Tests susceptibility.
- Tells if one cannot clear these toxins and creates CIRS
- C4a: elevations tell probable recent exposure
- TGF beta: immune activation
- Life Extensions has genetic test paired with biomarkers
- Mold bio-toxins & mold genetics – $800 total
- How to treat
- 1st – eliminate exposure, top priority
- 2nd – binders, bile acid sequestrants
- Cholestyramine 4g 4x/day
- Welchol 1-2x/day – not as effective but easier to take
- Best results with clay, charcoal, glucomannan, and Rx all in combo
- Coconut charcoal, bio-botanical GI detox clay, zymogen glucomannan
- longer term dosing and on/off use is OK
- Follow up testing/monitoring
- Visual acuity assessment
- Once this improves, you can decrease and/or stop treatment
- Responds quickly
- Visual acuity assessment
- Typical response
- 1st to respond, visual
- Followed by endocrine and gut
- Finally pulmonary and immune
If you need help with chronic inflammatory response syndrome, click here.
Episode Intro … 00:00:42
Most Common Symptoms? … 00:03:04
Where Does This Fit with Other Health
Interventions … 00:08.10
How To Diagnose … 00:12:50
Lab Testing … 00:20:00
Treatment Plan … 00:24:50
Successful Treatment Responses … 00:34:04
Empiric Treatment … 00:37:38
Episode Wrap Up … 00:40:46
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Mold, Mycotoxins, and CIRS with Dr. Jill Carnahan
Dr. Michael Ruscio: Hey, everyone. Welcome to Dr. Ruscio Radio. This is Dr. Ruscio. I am here with Dr. Jill Carnahan, and today we are going to be talking about mold, mycotoxins, and chronic inflammatory response syndrome—definitely a conversation I’ve been wanting to have. So Jill, welcome to the show. And I’m definitely looking forward to this topic.
Dr. Jill Carnahan: Thank you so much for having me.
DrMR: It’s my pleasure. So if you wouldn’t mind giving people a brief background on you, and if you can slant it toward your interest and involvement with the topic of mold, mycotoxins, and chronic inflammatory response syndrome, that would be great.
DrJC: You bet. So I’m an M.D. trained in family medicine, and I knew from the very beginning even before I went to medical school I wanted to get to root cause of illness. And at that time, I didn’t know that functional medicine existed. But during my residency, I quickly found functional medicine and it was a perfect fit, just trying to find root cause of disease and reverse things that are considered irreversible in conventional medicine.
And I had my own experience with cancer and with Crohn’s disease, both of which I healed through functional medicine early on at age 25. So I have a lot of personal experience and consider myself completely cured from both of those illnesses to this day. So pretty exciting stuff. So I live it. I live all the functional medicine tenets, and was doing well, great health up until about 2014, shortly after the floods in Boulder, Colorado, where I have my medical practice. And we had some water damage to our office.
And I started having some unusual symptoms—some shortness of breath, exercise intolerance, immune dysfunction. And we eventually found out we had massive mold issues in the basement of our office. And it was making me sick with the syndrome we’re going to talk about today.
And once again, I used functional medicine and some of the principles that we’re going to talk about today to completely get on the other side of that illness. But I understand it on a very personal level, so I’m excited to talk about it today.
DrMR: Boy! It sounds like you’ve been through a few different key areas of functional medicine. So you’re a great poster child for the power and the utility of functional medicine. That’s awesome!
DrJC: Yes. Yes, living, surviving, breathing testimony.
Most Common Symptoms?
DrMR: Right. So the first question I’d like to ask, of course, to help anyone listening to this try to hone in on that this is a conversation they should be listening more intently to is, what are some of the most common symptoms?
And I know the challenge with some of these conditions can be that the symptoms are so nonspecific, but can you try to provide us with some symptoms that might be more suggestive of mycotoxins, mold, chronic inflammatory response syndrome than not?
DrJC: You bet. So, there is some way to do a symptom cluster analysis. And I’m going to just go through some of those, because I’m sure your listeners may either identify, or if they’re practitioners, they may see patients with this, and so they can see, “What does this look like in a clinical practice?”
DrJC: Fatigue is by far the number one thing we see. And obviously, that’s very nonspecific. It could be infection or a toxin or inflammation, autoimmune. But in this disease, fatigue is a huge, prominent part. We also see brain symptoms. So, I was just last weekend teaching on reversing cognitive decline. And one of the subsets of Alzheimer’s is related to this illness, CIRS (the chronic inflammatory response syndrome) and mold exposure and is quite reversible. So we see memory, word finding, and especially calculation difficulties, where someone will just say, “Uh…uh…uh…” And they can’t think of the word they’re trying to say. So the brain is dramatically affected by this illness.
We see weakness, achiness, joint pain, like an inflammatory type of thing. And then we also see morning stiffness, sometimes muscle cramps. One thing that happens in this illness is abnormalities in the anti-diuretic hormone, vasopressin. And this will cause a dehydration, no matter how much the person drinks. So they will have frequent urinary incontinence, increased thirst, and electrolyte abnormalities, which can also lead to delayed cramping and morning stiffness and muscle pain.
Often, numbness, tingling, unusual skin sensation—even people where they feel like one side of their face is totally numb or they’re paralyzed. Respiratory issues are very common, so chronic sinus congestion, shortness of breath, difficulty with exercise, sinus nasal drainage, and then just lung inflammation, either pain or shortness of breath. It will actually look like asthma, but it’s not a classical asthma and it doesn’t respond to the typical albuterol inhalers that would treat it normally. One really unusual thing that’s kind of scary for people is sudden appetite swings, body temperature changes, and weight gain. And there’s a small percentage of patients who will lose weight.
But I would say the majority of patients have this leptin resistance that causes sometimes a massive—I’ve seen 50 pounds in three months with no changes in diet or exercise. And women, sadly, more common than men will have this massive increase in weight. And they can’t really do anything about it because of that severe leptin resistance that’s induced in this illness.
And then of course, as you would imagine, red eyes, irritated skin and mucous membranes, blurry vision. Sometimes, patients will have night sweats. And then another unusual symptom is ice pick pain, so when they describe that sharp, stabbing pain. It can be anywhere in the body, but it’s frequently in the head, a headache that’s like ice pick.
Abdominal and GI systems are affected dramatically, just like the respiratory tract, because we basically inhale and ingest these biotoxins, like mold, mycotoxins, and inflammagens, in the water damaged building. So the gut is affected. It causes increased intestinal permeability, loose stools, diarrhea, sometimes constipation, and abnormal digestion.
And then one other interesting thing is static shocks. This is also from the anti-diuretic hormone abnormality. So they have this electrolytes disturbance, and they actually start to sweat out salt on the surface of their skin, just like a cystic fibrosis patient would. So they create a human battery.
And I’ve had these patients come in and say, “Last year, I broke five watches just by wearing them on my wrist.” Or, “Whenever I touch someone, I have a massive static shock. In the summer or winter, it doesn’t matter.” So these are some of the usual things that people can’t really figure out. But it’s all connected to this illness.
DrMR: Wow! So it’s quite a broad array of symptoms. Now, would you say there might be a handful of those that are keynote symptoms that are almost always present with this? Or is it more broadly presenting than that?
DrJC: Really good question, because I would say fatigue almost always presents in some form. The brain cognition almost always presents in some form. And the respiratory/immune probably the second tier, and then possibly abdominal. So it depends.
And there’s a subset of genetic patients who are more likely to have autoimmune disease and inflammation and then another subset that’s more likely to have depression and fatigue.
DrMR: Gotcha. Okay. That’s helpful, having a few that can help people and/or clinicians try to parse through—these symptoms that they’re looking at may be more or less suggestive of this. So fatigue, cognitive impairment, respiratory involvement definitely helps.
Where Does This Fit with Other Health Interventions
So there are definitely a lot of symptoms, as you went through. So one of the questions I want to follow that with—and this is more for the audience than it is for me, because I have a sense of what your answer is going to be, but maybe I don’t. Where does this fit into the broader health picture in terms of how you sequence it? I’m, of course, thinking this is going to go after diet and lifestyle. I’m also assuming this would probably go after someone gets a good gut health workup and a basic thyroid assessment.
So this would be something that might be a little more tertiary in terms of the interventions because some of these symptoms might be ultimately coming from the gut. And some of these gut things are pretty easy to diagnose, treat, and sort out, but maybe you’ve seen different than that. So where would you say this fits in, in the broader sequencing of things?
DrJC: So that is such a great—that’s one of the most insightful questions I’ve ever had talking about this topic.
DrMR: Thank you.
DrJC: It really is. It really is, because you’re right. And all of us in functional medicine are like, “Start with the gut, maybe the endocrine-thyroid axis.” So I totally agree.
And what I would say is the typical—because I love this topic. I love to help patients with this topic. I obviously get a large percentage of patients who have this. Most of them have been to many, many other docs including functional medicine docs and just have not gotten well.
So, I think while it’s absolutely appropriate—and I would do the same thing, start with the gut and that—I’ve seen this pattern enough that usually right off the bat, if I see the pattern, I can start in, because the difficulty with this is these patients, if you treat the gut, if you treat the thyroid and the whole endocrine system—
We can talk about that because the whole endocrine system is disrupted in this disease—thyroid, adrenals, female hormones, male hormones. And then the gut is definitely disrupted.
So what happens with these patients is they present with those things. You try all the good functional medicine stuff that we do and usually get results with. And nothing will help them. So that’s what happens with these guys.
And really, the core thing and the number one thing we need to do is get them out of the exposure. So if they’re living in a house with water damage or a work place with water damage, you can do everything in the world that would typically treat, say, small intestinal bacterial overgrowth or dysbiosis of other types, and they won’t get well.
And the core issue is a lot of even functional medicine docs aren’t really aware of this and aren’t seeing it. And so they’ll try to treat these difficult patients, they aren’t getting better, and they don’t know what else to do.
DrMR: Yep. It’s very well said. And just one thing I’d add in to try to provide people, especially patients listening to this, some clarity. Make sure you adequately tick off the gut box.
DrMR: Oh, and I guess let me even take a step back even further for the diet and lifestyle box. Make sure you try more than one diet. You might do the paleo diet. And if you’ve done the paleo diet, there may be a little more dietary tinkering that you require than just that. So make sure you tick off a few boxes like paleo, maybe autoimmune paleo, maybe low FODMAP. Try a couple different diets that are available out there.
And then with lifestyle, make sure you do more than maybe start going for a walk once a week. Maybe you’ve got a frank sleep deficiency you haven’t addressed yet. So oftentimes, we gloss over those. But make sure that you’ve tried at least a few diets, would be my recommendation, and really given your lifestyle some thought. And then in addition to that, with the gut, just because you pooped in a cup and brought that to a lab and the doctors looked at the results doesn’t mean that has been a thorough gut evaluation. And I think most of the audience probably gets that, but I do see a number of patients that come in saying, “Well, I’ve already had my gut checked.” And they bring in one stool test from a doctor and that misses a lot.
DrMR: Especially if they only have SIBO. So things that people probably already get, but I just want to make sure to reiterate. If you check off the gut box, make sure you’ve done a thorough check with someone who’s fairly skilled in the gut. And Jill, anything you want to add to that?
DrJC: Oh, I love—again, just such insightful questions, because I think so many patients, like you said, just go. And you and I both know this. There are certain labs that just don’t really do a complete evaluation.
DrJC: And if you’re not looking at urine, stool, and breath and all of these different things to assess the gut and symptoms and history, then you’re probably missing things. So I completely agree.
DrJC: There are so many docs out there, or practitioners or nutritionists, that are all about one diet or one lifestyle. There’s no one-size-fits-all.
How To Diagnose
DrMR: Right. Well said. Well said. So this naturally leads us then to, how do people diagnose this? And I’d really love to get your take on this, because I am by no stretch of the imagination a mold, mycotoxins, or chronic inflammatory response syndrome expert.
But I keep my eyes open. I hear things. I poke around here and there. And some of the stuff I’ve seen in terms of diagnostic recommendations must be well in excess of at least $2000 or $3000, if not significantly north of that. And that may be what has to be done.
But what I can say through the area that I do have a lot of expertise in, which is the gut, I’m doing probably 30% of the testing I was doing five years ago. And we could make a rationale for doing all of these tests, but I’ve really been whittling it down. And while you could make an easy case saying initial gut evaluation should be $3000+, I can do it for, depending on if we have insurance or not, maybe $500 up to $1500 or so. So, I wonder if the same thing applies to this syndrome, because I’ve heard a lot of tests recommended. But I’m wondering, with your clinical experience, can you whittle it down to more critical essentials in terms of a diagnostic workup?
DrJC: Great question, because if you would do everything recommended, it is thousands and thousands of dollars.
DrJC: So the first thing is history, signs, and symptoms. So in clinic, I can usually get a really good idea. And I’m usually 99% accurate on the people I suspect for this. They test positive for it. And you know how that is. You do the same thing. You’re looking like, “I think they have SIBO.” And you confirm that with testing. But in the clinic, you’ve already said, “This is pretty likely.”
DrJC: And you’re usually right.
DrJC: So it’s the same thing with this. You get to know the illness. You see the patterns. And you’re pretty sure. And then you just confirm it with whatever testing is needed.
So the questions are really important. And a lot of patients, if you just ask them, “Do you live in a moldy house?” Everybody is going to say, “No.” So you have to ask, “Do you live in a building that has had water intrusion, damp basement, musty smells?” Musty smells are guarantee of VOCs from mycotoxins. So that is water damage until proven otherwise.
Condensation on the windows, humidity, flat roof, older buildings. Did you develop this illness after a move to a new location or got a new job. The location is always critical. Do you feel better when you’re on vacation? Musty odors, we talked about. If the ceiling tiles are damaged or there’s water damage in there. Any leaking pipes, washer, dryer leak.
And people don’t even look in their front load washers. And most of the rubber gaskets of them are loaded with mold. If you’re listening and you have a front load washer, check it. And if it has mold in it, replace the rubber gasket or replace the washer and dryer.
So those kinds of questions are first and then testing. So the difficulty is I have patients all the time that email to me after reading a blog or something and they’re like, “What’s the test for mold?” There’s no one test. History is number one. You can test the environment and that’s always important. You can do a formal inspection with a mold inspector. A lot of times, they miss things. So you want to get someone that’s good. And there’s also a test that patients can do themselves. It’s called ERMI. And it’s ordered on Mycometrics.com. It’s a dust sampling that tests DNA of mold in the house dust.
And for right now, what patients have access to, even though that test isn’t perfect either, it’s the best thing to start with because they can do it themselves. And there’s scoring there. If that ERMI is scored less than 2, it’s likely safe. And then there’s some other types of scoring you can do with that to determine if someone who already has this illness can live in that house. So symptoms, history, ERMI test are basics.
As far as lab testing, there’s no one thing. The big contenders—there’s a lot of just serum lab you can do through LabCorp or Quest. Genetics are big. So I always want to know the genetics. And it’s called HLA-DR typing, and this can be done through LabCorp or Quest, and that tells us if they’re the 24% of the population that is genetically susceptible.
This is important because you can have a whole workplace or a home of five family members. And two or three of them get very, very ill and the rest are fine. And it’s so confusing to people because they’re trying to figure out why did mom and dad get sick and the kids didn’t. And that’s genetics. So the genetics of this are that those patients who have the HLA-DR haplotypes cannot clear these small toxins from their body and they end up accumulating and driving an inflammatory immune response.
And it’s actually that inflammatory immune response that does the damage and causes the illness versus the mold toxins themselves. So that HLA typing is pretty critical. That’s one of the tests I would get. But just like the celiac genetics, that just tells susceptibility. It doesn’t tell disease.
And probably the top few labs that could tell us what direction to go—C4a is a split complement product that is activated by biotoxins, especially mold. So if that is elevated, it’s very likely that they’ve had a recent mold exposure and are on this pathway. So if I had to pick one or two labs, the genetics, the C4a.
And then TGF-beta is another big one, and that’s an immune inflammatory marker. It’s a marker of an overactive immune system, an immune system that’s trying to clear this toxin but can’t really do it. It’s a potent stimulator of autoimmunity. So these patients will often have other autoimmune diseases. And until you get that TGF-beta down, they’re going to be prone to developing more and more autoimmune diseases.
It also causes remodeling of the interstitial lung tissues, so these patients can have actually the inflammatory damage occurring in the lungs as well.
DrMR: Fantastic answer. And a few follow-up questions. Was that TGF-beta?
DrMR: TG. Okay.
DrJC: TG. T as in Tom. G as in girl.
DrMR: Okay. I really like that. So it sounds like you’re marrying a couple practical tests with a well-performed history and symptom assessment to give you a pretty good estimation of risk.
DrJC: Yes. And me personally, because the patients have been a lot of places and want answers, I almost always do the whole panel. And a couple hints—Life Extension now has a patient direct order lab that has the top five biotoxin markers and the genetics. So that’s a wonderful resource.
Both tests, the genetics and the biotoxin markers, are under $400. So really, really affordable. If we did these through a conventional lab, it’d probably be $4000. So it’s a dramatic decrease. And they can order that themselves through Life Extension. It’s mold biotoxin markers and mold genetics. And so that’s a wonderful way to get the basics. If I just had those labs, I could probably make a diagnosis.
DrMR: That’s great. Okay. So the Life Extension’s genetic paired with biomarkers called the mold biotoxins with genetics panel?
DrJC: Perfect. Yep.
DrMR: And it’s about $400, you said?
DrJC: Yeah, there are two. The genetics is one. And it’s about $400. And the mold biotoxin panel is one. And it’s about $400.
DrMR: Okay. So about $800 out the door?
DrJC: Yes. Yeah.
DrMR: Okay. That is terrific. Okay. So I’m just making a quick note of that because I know people are going to ask. So taking notes for everyone listening here.
All right. So I really like that simpler approach, because, as you said, there are some of these biotoxin markers—and there are quite a few of them that I’ve heard through LabCorp and Quest. And I’m assuming you can probably be a little bit liberal if someone has a good insurance plan. But do you find challenges with insurance coverage? Let’s say someone does have United or Blue Cross Blue Shield. And they usually have pretty good coverage. Do you find you get flagged for these markers because they’re a little bit outside of the standard model? Or are people with good insurances plans usually covered for these?
DrJC: With insurance, I do pretty well. And typically, I don’t skimp and do just a few of them. So the ones that pay cash, those are the ones I’m like, “Let’s do Life Extension because otherwise this could be a $10,000 bill.”
DrMR: Agreed. Totally agreed.
DrJC: Definitely. But the thing that’s important is as you treat, you really need to know the markers and get them normal. And so the whole process of treating involves knowing which markers are abnormal and how to go in that direction. So eventually if you’re treating them, you probably need all the markers.
DrMR: Gotcha. And I think that there was something that Allison Siebecker said that I’ve always remembered, which is it takes her maybe two or three years to really feel like she has mastery on an issue.
And the more I think about that, the more I agree with it, because first you learn about all these tests that you could use. Then you learn the ones that are the most effective. Then you learn how they tend to track with patients getting better or worse.
And finally, you learn what the best tests are, what a response should look like, what a response shouldn’t look like and knowing you need to change things, and then when you’re done, because I’m assuming that it’s rare that all these markers look perfect, but there’s probably what you would call a clinical win.
DrMR: Yeah, and I’m assuming that has taken you at least a few years to figure all that out.
DrJC: Absolutely. Yeah.
DrMR: Okay. Okay. So I love the fact that people, if they don’t have good health insurance can get in and out the door for $800. That seems actually really reasonable.
A question about some of these markers that I have that I know people in the audience are probably wondering is, what type of scientific backing do we have for some of these? And I’m sure that there are some that have better evidence. It’s not a pointed question, but just wondering what the science looks like behind some of these.
DrJC: You bet. So a lot of this is based on the work of Ritchie Shoemaker, who has brilliantly doggedly gone after this. And he has published quite a few papers, especially when you get to VIP, which is a treatment for some of the end-stage of this. And it can actually reverse the atrophy that we see in brains. So there are some pretty dramatic results.
And some of it has better evidence than others. And I think one of the things that Shoemaker’s group does really well is he encourages every physician he works with to gather data and to publish if possible. So they’re working on that. And some of it, just like talking at the Reversing Cognitive Decline Conference last weekend, one of the ways I presented this stuff is we have a clinical level of evidence that it works. We have limited published evidence that it works.
But right now, especially for, say, Alzheimer’s or for this disease, chronic inflammatory response, we don’t have a lot of other good options. So we can step out on limited evidence because the risk is low. And the benefit is great. And we don’t have another option.
And that’s kind of how I view it. There’s still limited evidence, but we’re all trying to gather data. And for now, what I see in clinical practice makes me a believer because it works. And it worked for me personally. And that’s enough.
And especially when I’m doing stuff, I try to think about—I’m sure you do this, too—as far as what’s the risk of this intervention. And if it’s a very low risk and possible benefit, then it makes sense to try it.
DrMR: Completely agreed. Especially with more natural-type treatments, the negative risk from the health perspective of the patient, I think, is fairly low.
DrMR: The thing that I think is more damaging is actually the financial aspect of it.
DrMR: Which is why I asked so many questions regarding how can we do this effectively, efficiently. Because that’s where I probably see the most emotional and psychosocial stress done to patients, where they go from doctor to doctor, $3000 to $5000 here, $3000 to $5000 there. And then they get pretty jaded and pretty worn down from that pretty quickly.
DrJC: Totally agree. I love that you talk about that, too, because I’m always in front of the patient like, “Your list is too long. Let’s get you on fewer supplements.” Or, “What’s the minimum amount of tests we can order and get the answer?” I love that.
DrMR: Exactly. Exactly. So then, let’s talk about treatments, because there are a few different things that I’ve heard in terms of bile acid sequestrants that can be helpful. And I’m sure there are a lot of things that people may have heard little bits and pieces about.
And so same type of question—what would you say some of the treatment fundamentals are for this, as opposed to the bells-and-whistles Cadillac plan? What would be some of the things that you have to have as part of a good treatment plan?
DrJC: Yeah, so what I found—of course, like we said, I just can’t emphasize enough. You have to get out of the exposure, because if you try to start treating these patients and they’re ongoing, their immune system is so reactive because of that inflammagen and mycotoxin exposure that it’s just like this vicious, vicious cycle. And in itself, damage is happening. So if you just try to give them some treatment and they’re still in that environment, nothing will happen.
DrMR: So quick question on that one.
DrMR: Not to cut you off.
DrJC: You bet. You bet.
DrMR: So I’ve had some patients—again, not being an expert here, but part of my intake process is looking, at least preliminarily at environmental exposure to mold and toxins and such.
And sometimes, these are flagged. And sometimes, it’s pretty easy, where their basement smells like mold. They started feeling a little bit fatigued and irritable and brain foggy after they moved in. When they go on vacations, they feel better. When they get home, they start to feel worse.
So some of these things are very easily outlined. And we have people go through mold remediation. And they feel a lot better in a short period of time just post remediation. So I’m assuming that there’s probably a subset of people—you probably don’t see a lot of these. I’m assuming you see some of the more progressed cases, but I’m assuming there’s a subset that all they have to do is just remediate or remove the exposure. And then a little bit of time, and they’ll go back to normal. Is that correct for me to say? Or what do you think there?
DrJC: I think it depends, again. The genetics are a super high risk one. We in this group call it the dreaded genotype.
DrJC: And those guys don’t get well without an intervention, even if they get out of the exposure. A lot of the other ones do. So you’re right. And again, I tend to see the ones that don’t get well. And they’ve been ten years past mold exposure. And they’re still really sick.
DrJC: So I think that there’s probably a certain percentage of both.
DrMR: So do you know what percentage contains that dreaded gene combination that you mentioned roughly?
DrJC: Yeah, I think it’s about 4%. So I think the 24% of the population has some risk. And then about 4% total have the higher risk. So about 1 in 20.
DrMR: Gotcha. Gotcha. Okay.
DrJC: Yeah. So remove from exposure, of course. And then the second thing would be binders. And the ones that have been studied are prescription. They’re bile acid sequestrants.
And this is how they work. Basically, your liver obviously takes toxic exposures and detoxifies them in phase 1 and phase 2 and excretes them into the bile where they go out through the stool. In someone who gets sick from this, they are reabsorbed through the enterohepatic recirculation. So it’s like this merry go round that never gets out of their body and accumulates and continues to cause damage. So we can use anything that binds bile acids to start to pull those out. And the ones they studied are cholestyramine powder and Welchol, and those are extremely effective.
Cholestyramine powder has to be taken 4 grams, four times a day. We typically compound that. It’s hard to take because it has to be taken an hour before a meal or supplements or two hours after. And you think, four times a day. But those patients who are really sick are motivated. And it’s pretty profound, the effect. They get a really, really good, powerful effect. Welchol is easier to take. It’s tablets they can take once or twice a day. And it’s not as strong a binder, so it’s about a fourth as effective. But it’s way easier to take. It’s also more expensive.
And then I, in clinical practice—there’s no published evidence for this, but I know that binders in general each have different affiliation for different toxins. And I find I’ve gotten the best results when I combine clay, charcoal, chlorella, something called glucomannan, and possibly prescription binders. So I tend to use lots of different binders, and I get a much better effect.
And as you can imagine, even endotoxins from the gut can be bound by clay and charcoal. So you get this whole body effect of removing the toxins. Sometimes I’ll add to that Epsom salt baths, mineral water, a sauna. Anything else that just enhances detoxification will help them get well.
DrMR: And the cholestyramine—did you say that that was 4 mg four times a day? Or what was the dosing on that?
DrJC: You bet. So the compounded powder is a 4 gram scoop four times a day.
DrJC: 4 grams four times a day. Yeah.
DrJC: And like you said earlier, sometimes just removing from exposure—sometimes just removing from exposure plus binders will get the patient well. So I always start at the bottom, that safe level. And patients who do well on binders basically could be on them for a fairly long time.
And some patients who’ve had CIRS and they’re doing much better will still take binders if they travel or if they get an unusual hotel that smells funny or things like that. They can use binders to keep themselves well as well after an unusual exposure.
And one way to track that would be—there’s a visual contrast study that can be done in the office or online. And that detects retinal changes to capillary hypoxia. And so when that happens, you have these changes in ability to distinguish black and gray lines. And you can actually measure this.
So it’s called visual acuity, and it can be measured in the office. And if that’s abnormal, it’s likely that there’s been a toxic exposure. Mold is one of them. And if they are healing with the binders, their visual acuity will go back to normal. So that’s one way to track how your binders are doing.
DrMR: I like that. I’m assuming it’s pretty easy to administer that and pretty inexpensive.
DrJC: Yes! Easy. And if your physician gets a test kit, it’s free for the patients. I don’t even charge for it.
DrMR: Awesome! Love that!
DrMR: Okay. So two questions. One, what about natural bile acid sequestrants, like Googaloo, I know, has been used.
DrMR: Or whatever you want to abbreviate it.
DrMR: Have you found that to be effective at all?
DrJC: That makes perfect sense, because that’s what all of these do. And we could add it to the other things. I just happen to use the ones I mentioned and haven’t used that, but it probably would work just as well.
DrMR: Gotcha. Is it one compound that has clay, charcoal, and glucomannan all in combination? Or do you use those just as separate supplements?
DrJC: Well, there are lots of brands out there, but I’ll tell my favorites because this is what’s worked. And I like the upgraded coconut charcoal. It tends to be a really fine charcoal that works very well and is a higher dose per capital.
I love that Bio Botanicals GI Detox. It’s a really water soluble clay with a tiny bit of charcoal. And then I like the Xymogen OptiFiber Lean, which is actually a glucomannan. And so those three all combined together.
DrMR: Gotcha. Do you find people get some bloating with the glucomannan?
DrJC: So, you’re an expert in SIBO, so you’ll understand this.
DrJC: Basically, the patients who have underlying SIBO won’t do so well on these things. And if they have constipation, all the binders can be constipating. And patients with diarrhea love it. They feel regular for the first time in their life.
DrJC: The tricky ones—the ones that have chronic, severe constipation that’s intractable—those are very, very difficult, because they just cannot tolerate binders.
DrMR: Gotcha. Okay. Yeah, I’ve seen similar things with glucomannan.
DrMR: And another question, and this is a little bit more speculative, but theoretically, it makes sense. Risk of causing bacterial overgrowth with long term use of bile acid sequestrants. And just for the audience, bile is actually anti-bacterial, and so there is a potential that if you’re soaking up too much bile, you may have an unintended pro-bacterial effect.
And the reason why I ask this question is, I saw a patient recently who had been on cholestyramine for quite a while. It was actually a child, and they had pretty progressed SIBO. And now, she’s been done with her cholestyramine detox protocol, and I’m wondering if these things are going to creep back to normal over time. But have you seen anything there?
DrJC: So great question. And theoretically, I can see the issue. I haven’t seen that. What I’ve seen more is the mycotoxins could be one of the potentially most damaging things to the gut ever. It is so toxic to the gut, and not only mycotoxins, but everything involved in a water damaged building.
And so what happens is, you have a massive increase in intestinal permeability and massive dysbiosis because of immune dysfunction. So frequently, candida or fungal dysbiosis and SIBO can be as well. And so typically, I see that as a result. And then as you do the binders and clear that out—and another favorite product I like is Restore. It tends to do a really nice job of fixing those tight junctions after an insult like this. I have not really seen that.
But I do use the binders for as long as it takes for the visual acuity to get to normal. And then I’ll decrease dose to do maintenance or just intermittently. And I typically see the gut get better and not worse.
DrJC: If that makes sense, yeah.
DrMR: Yeah, that makes a lot of sense. And I’m glad that you’re not seeing problems with SIBO, because, like I’ve said many times before on the podcast, theory and speculation is one thing, but then clinical science is actually another. And even though it’s just anecdotal what you’re observing, I’m glad that you’re not observing people getting much gassier and bloated or what have you as they go through this treatment. They’re actually getting better, it sounds like.
DrJC: Yeah, in general, I would say very much.
Successful Treatment Responses
DrMR: And that’s a good segue to my next question, which is, what does a typically response look like? I love the fact that this visual acuity test is a simple, cheap way to assess if therapy is working.
But let’s say someone has a local doctor. They don’t know a lot about this. They’re trying to bring them some information and piece together a treatment plan. What are some typical guidelines you can give them in terms of, “This is what response should look like. This may mean that you’re barking up the wrong tree.” If there is even a standard way this plays out.
DrJC: Let’s see. Because it’s so complex. I would say some of the stuff that clears up first is—the lungs can be tricky, because inflammation of the lungs can take some time even after exposure. And some of these markers that stay high for a while are actually causing fibrosis in the lungs.
I’ve seen a couple cases of pulmonary fibrosis that turned out to be CIRS, this mold exposure, that had developed into a pretty severe syndrome in the lungs.
The endocrine system is disrupted, the gut. Every system you can imagine in functional medicine is disrupted by this. So I guess you would see—hormonally, we might want to just briefly talk about that, because this is so profound. And that’s probably one of the things that starts to regulate first. So MSH is another marker. And it’s typically low in this illness. MSH is like the ring master in the pituitary and hypothalamic-pituitary axis. And if it’s low, you often have upregulation of aromatase, which causes excess estrogen in both men and women and very low testosterone.
So for women, they might present with heavy, painful periods, tender breasts, fibrocystic breasts, fibroids, endometriosis. And they will typically have all those symptoms. Men will have very low testosterone, sometimes man boobs or excess weight around the middle due to the low testosterone.
And then cortisol is disrupted. So there’s just disregulation of ACTH and cortisol axis. You often typically have very high cortisol levels with no regulation. And then thyroid—you will often have a subclinical hypothyroid where the TSH looks normal but they’re very resistant to thyroid hormone, and so they feel hypothyroid. They have all the symptoms. And all of those endocrine things will start to normalize once you treat.
And I also mentioned ADH. ADH is very, very low in the presence of dehydration and high osmolality, which is unusual. It’s supposed to respond to dehydration and help you retain water, but it won’t work. And so patients will be drinking and peeing and drinking and peeing and dehydrated. And they’ll feel miserable.
Sometimes, I’ll try that with orthostatic hypotension or POTS, as well. So all of those endocrine things, you’ll see normalize. And you can follow any of the markers that are abnormal. Hopefully, you’ll see the respiratory symptoms start to decrease. That one takes a little longer.
The visual acuity can be pretty quick. So that’s an in-office test you can check. And then immune system abnormalities can also be a little bit longer. So I’d say the respiratory, immune lags behind the endocrine system and the gut.
DrMR: Gotcha. Okay. So visual acuity responds first. And then the endocrine system and the—gosh. The endo and the gut are next.
DrMR: Okay. Endo/gut next.
DrMR: And then, finally, we have some of the pulmonary-based symptoms. And was there another? Pulmonary and immune that are last ones.
DrJC: Immune, yeah.
DrMR: Okay. Sorry. I’m trying to take notes for people at the same time.
DrJC: That’s okay. And that’s just what I see clinically, but everybody’s different. And there’s not a really good pattern that’s always the case with this.
DrMR: Gotcha. So another question is, do you ever do an empiric treatment? And for the audience, what I mean by this is, sometimes someone comes in to my clinic, they’re in a pretty tough situation financially or they may have a really negative reaction to lactulose, so they can’t do the lactulose SIBO breath test.
So we just end up doing more of an empiric approach where we treat them as if they had a certain condition. And then we monitor them. And if they have a typical response, then that tells us that we’re probably on the right track. Is there an empiric type of approach that you’ve utilized here for people that don’t have all the resources?
DrJC: That’s a good question. You’ve got me thinking, because I’m totally like you in the sense of I’m always looking for ways to save the patient money. I think if it were me, I’d want the best cost and the most important stuff first and prioritizing. But on the other hand, I’m also of the mindset of test, don’t guess. And this is something that’s so complex that—even giving binders, I think that there could be some harm. Clay or charcoal over the counter is perfectly acceptable to try.
But again, if they’re in an environment, I’d want to test the environment, whether it’s testing for mold in their environment or testing at least the genetics and a couple basic labs. And this illness, I usually am testing before trying a whole lot because it’s so complex.
DrMR: Okay. No, fair enough. And with the testing their environment, you mentioned the test earlier, the dust test. Is that the main environmental test that you’re using? Or are there other ones in addition to that?
DrJC: So this is something really interesting, because I know this well enough that if I get the labs back, even just the basic ones, and I’ve taken history and I’m 99—when you see this and you get to know it, you’ll know, “Gosh. They have mold somewhere they’re getting exposed to.” And so it’s just a matter sometimes of finding it.
I had a patient who hired an inspector. First one said there’s no problem. Second said there’s no problem. Two, three four, maybe the fifth one finally finds a massive mold issue behind the walls, because the tricky thing—this is the hardest part about this illness—finding people in your area you trust.
I even to this day have people I’ve used, but I don’t really have one great, reliable group that has a homerun every time. So I think the most difficult piece of this is environmental testing, because you and I don’t know how to do the environmental testing. We need experts. But a lot of them are unreliable or miss things.
This ERMI test is good, but even that alone is not good. If you have everything else that’s showing that this is likely the illness and you have a perfect ERMI score, there’s mold until proven otherwise.
DrJC: So that’s tricky, because patients will often come in and be like, “Oh, I did a test. And it was fine.”
And I’m like, “No, your body is telling you differently.” And we always—if we keep going, I still have not had a case where we’re suspicious and we haven’t found an issue.
DrMR: Gotcha. Gotcha. So it sounds to me like many things that I recommend. This would probably be most efficient in terms of time, energy, and money invested if you found a good clinician in this area and just followed their lead rather than trying to piece it together on your own.
DrJC: With this, probably, because it is complex, unfortunately.
Episode Wrap Up
DrMR: Right. Alright. Well, I think we did a great job of outlining that topic. I’m really happy with how we got through all that. Is there anything that you want to add to this conversation as we bring things more to a close?
DrJC: No, you did a great job of covering it.
DrMR: Thank you. Thank you. Well, Jill, thank you so much for taking the time, and where can people find you or follow some of your writings if they wanted to get more information?
DrJC: You bet. Just Jill Carnahan (my name) .com. So J-I-L-L-C-A-R-N-A-H-A-N.com. And of course, I have a free newsletter. I send out information and what things like this that I’m writing about. And I would love to have your listeners join my tribe.
DrMR: Awesome! Well, Jill, thank you again so much. This was really a terrific conversation. So I can’t thank you enough.
DrJC: You’re welcome. Have a great day.
DrMR: You, too, Jill. Take care.
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