Dr. Ritchie Shoemaker on Chronic Inflammatory Response Syndrome
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RHR: Dr. Ritchie Shoemaker on Chronic Inflammatory Response Syndrome

by Chris Kresser

Last updated on

Revolution Health Radio podcast, Chris Kresser

Dr. Shoemaker is a pioneer in understanding how low-dose biotoxin exposure, including toxic mold and algae, impacts our health and contributes to disease. Find out what chronic inflammatory response syndrome is, how people get exposed, and who is susceptible.

A few years back, we were living in a home that I later learned had mold, and I was exposed to mold and started to develop some symptoms after my long journey back to health.  I started to feel some symptoms again that I hadn’t felt in quite some time and knew that it was something different than what I had been dealing with before.  And so over the last year or few years, I’ve been investigating that further, exploring a few different avenues, and after quite a bit of research, I came across SurvivingMold.com, which is Dr. Shoemaker’s fantastic website. So I have a personal interest in this topic for my own health, and then it’s something that we’re also seeing a lot of in the clinic, so I think you’re really going to enjoy this interview.

In this episode, we cover:

4:38  What is chronic inflammatory response syndrome?
12:56  How people get exposed to biotoxins
29:18  Who is susceptible to exposure?

Links we discuss

Play

Chris Kresser:  I’m Chris Kresser and this is Revolution Health Radio.

Hey, everyone, it’s Chris Kresser.  Welcome to Revolution Health Radio.  If you listened to the last episode, you’ll know it was our last with Steve Wright as the host of the show.  After several years of doing it together, Steve is moving on to other projects that he has in the works, so from here on out, at least for the foreseeable future, I’m going to be hosting the show myself.  I’m going to have more frequent interviews with guest experts, and we’re going to have guest hosts, like Dr. Amy Nett from our clinic, California Center for Functional Medicine, as well as other guest hosts.

So in that spirit, today I’m going to interview someone that I’ve been wanting to have on the show for quite some time.  We had a couple of scheduling snafus, but we finally worked it out.

Dr. Ritchie Shoemaker is a pioneer in understanding how low-dose biotoxin exposure, including toxic mold and algae, impacts our health and contributes to disease.  He’s the author of eight books and multiple published academic papers.  His latest book, Surviving Mold: Life in the Era of Dangerous Buildings, is a guide through diagnosis, treatment, remediation, and return to health.  Dr. Shoemaker is currently retired but continues to lecture throughout the US on chronic inflammatory illnesses that are caused by exposure to moldy buildings and other biotoxins.

Before we jump into the interview, I want to put this in a little bit of context for you.  A few years back, we were living in a home that I later learned had mold, and I was exposed to mold and started to develop some symptoms after my long journey back to health.  I started to feel some symptoms again that I hadn’t felt in quite some time and knew that it was something different than what I had been dealing with before.  And so over the last year or few years, I’ve been kind of investigating that further, exploring a few different avenues, and after quite a bit of research, I came across SurvivingMold.com, which is Dr. Shoemaker’s fantastic website, and just spent several hours devouring the content there and then purchased some of his training materials and just took a really deep dive into the world of chronic inflammatory response syndrome, which we’re going to talk more about in the interview.

Then I joined the physician email list, Dr. Shoemaker’s community, and since then have been pursuing this also with patients at the California Center for Functional Medicine for the past six months or so.  We’ve been testing patients for this syndrome and beginning to treat them, and it’s been quite an eye-opening experience.  It’s turned out to be extremely common in our patient population, and as you’ll hear when I speak with Dr. Shoemaker, it’s something that potentially could be affecting a pretty significant percentage of the population.

So I have a personal interest in it for my own health, and then it’s something that we’re also seeing a lot of in the clinic, so I think you’re really going to enjoy this interview.  It’s a little bit longer than our typical episode, and interviews may be like that in the future, but we barely even scratched the surface.  It’s a pretty complex and fascinating syndrome, and I’m definitely going to have Dr. Shoemaker back to talk more, and I will also be talking about this syndrome and writing about it more as we go forward.  So without further ado, I’d like to introduce you to Dr. Shoemaker and start the interview.

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OK, now back to the show.

Dr. Shoemaker, thanks so much for joining us.  It’s a pleasure to have you on the show.

Ritchie Shoemaker, MD:  Well, I am delighted to be talking to you today, and thank you so much for asking me to join you.

Chris Kresser:  My pleasure.  Since this is my audience’s first introduction to biotoxins and biotoxin illness, I thought maybe you could just give us a brief overview of chronic inflammatory response syndrome, and then we can get into some details after that.

What is chronic inflammatory response syndrome?

Ritchie Shoemaker, MD:  It’s hard to use the word ‘brief’ when I look at the last 18 years of my life, but if you look at what happened to me, I was a very happy rural family practice physician on the eastern shore of Maryland.  We’re between the Chesapeake Bay and the Atlantic Ocean, and there’s not a lot of people here but a lot of really pretty things, and I had a nice idyllic life.  Rural family practice is what I wanted.  My wife was teaching pre-K, daughter was growing up, didn’t lock our doors, and then an unknown organism called Pfiesteria started making people sick in the local rivers, especially the Pocomoke River nearby.  The illness was one that no one had ever seen before, although there were rumors that the organism had made people sick in addition to killing fish in North Carolina, and the state of Maryland saw that, yeah, we had some dead fish here, but I kept on saying we’ve got sick people!

Chris Kresser:  Yeah.

Ritchie Shoemaker, MD:  And the illness was unusual.  It wasn’t one that had abnormal blood tests.  There were no markers that we could find, and yet these people were definitely ill.  They had fatigue and muscle aching and cramping and abdominal pain and respiratory symptoms and impressive cognitive issues, and what in the world was causing this?  One lady had terrible diarrhea, and at a loss and being an interventionist like I am, I said, “Well, I can stop your diarrhea.  Here’s a nonabsorbable anion-binding resin that is constipating.”

Chris Kresser:  Right.

Ritchie Shoemaker, MD:  “It’s called cholestyramine.”

Chris Kresser:  Right.

Ritchie Shoemaker, MD:  “It’ll stop your secretory diarrhea.”  And she says, “Thank you very much,” and two days later was very happy when she called and said, “My diarrhea has gone away.”  And I said, “Yeah, old fashioned drug.  Us rural docs know all about cholestyramine.”  And then she said, “You know, but my cough stopped and my muscles stopped aching.  My headache went away, and my memory’s back to normal.”  And I said, “It is?!”

Chris Kresser:  Wow.  Just two days of cholestyramine did that.

Ritchie Shoemaker, MD:  Yeah.  So all these months of agony, what’s going on, and arguing with politicians if there is a thing, and being accused of all kinds of creative things.  I was a quack and a whacko and a kook and all that, but I guess that was not unusual for the time.  If you don’t understand something, throw rocks.  But nonetheless, I started giving cholestyramine to all my patients who had exposure to the waterways, and they got better.

We had, Chris, no biomarkers.  I’ve been working with you, and I keep on saying, “You need biomarkers.  You need to measure the labs.  You need to do this.”  I had none.  Talk about being on the seat of your pants.  I started seeing people with syndromes similar with other dinoflagellates in Florida.  Blue-green algae problems came along.  Mold problems mimicked all these things.  And by golly, give them cholestyramine, and you know full well their multi-system, multi-symptom illness is going to get better.  And that was fine until 1999, three years later, when I started giving people who had Lyme disease, still sick after antibiotics, cholestyramine, and I expected, “Well, this will be no big deal.”  And uh-oh, I was wrong.

Chris Kresser:  Right.

Ritchie Shoemaker, MD:  Boy, did I slam those guys.  What in the world could make everybody so much worse?  At that time, all we thought the illness was — and I was working with good researchers at the time.  After we got a couple papers published, folks stopped calling me a kook quite so much — but nonetheless, with Lyme, this was more than just a toxin, and we know that there had been a patent issued for a Lyme neurotoxin, so I wasn’t on total soft ground, but yet this illness had something more — inflammation from chemicals called cytokines.  It was all the fad back then to talk about tumor necrosis factor-alpha, and it was all new, and now when you look at Phil Mickelson on TV, he’s pushing his TNF blockers.  And rheumatoid arthritis.

Chris Kresser:  Right.

Ritchie Shoemaker, MD:  What a difference 15 years has made.  Holy cow.  But nonetheless, why did only some people get sick and other people didn’t?  Here came the immune response genes, or HLA.  That was in 2000.  My goodness.  All the sick people had a particular molecular makeup of immunity, and more cytokines came along, and it wasn’t too long before people in Australia were publishing about a germ that didn’t cause too many symptoms in the nose but lived there but created chronic pain and made chronic fatigue appear, and if it was already there, made it worse.  So we started adding coagulase-negative staphs that are biofilm formers to the whole protocol.

Then, you know, people were getting better and that was great, but some, darn it, they just didn’t get better.  What were we missing?  And it didn’t take too long before complement with C3a and C4a came along.  Every year.  VEGF would be one thing, and gliadin antibodies another.  It wasn’t too long before we had this cast of characters that took about 30 tubes of blood to diagnose.  Fascinating development, and this was not funded by NIH.  This was not funded by my good friends at the CDC.  They didn’t like what the acronym actually stood for, which is the Centers for Discussion Crushin’.  But nonetheless, you know, it was a fantastic idea.

So our name was early on a chronic neurotoxin-mediated illness.  Then we find out some neurotoxins didn’t cause this, so we had to turn it over to a chronic biotoxin-associated illness because NOAA, the National Oceanographic and Atmospheric Administration, had a lab where they looked at biotoxins down outside Charleston, South Carolina, and Ciguatera and Pfiesteria were organisms they studied, the dinoflagellates.  But you know, it wasn’t until 2008, after three years of begging, finally a lab started agreeing that they would run, for $65 a pop, transforming growth factor beta1, or TGF-beta1, and suddenly what we now knew is this was way more than just a toxin illness.  This compound could be present and it would deplete the protective effects of special T lymphocytes, these white blood cells that you’ve heard about with HIV populations, CD4 and CD8 population cells, but these were different ones.  These were T regulatory cells, and now we had high TGF-beta1 and low Tregs, and folks acted like they were biotoxin patients, but they weren’t.  They were much different but still in the same category.  

Chris Kresser:  Mm-hmm.

Ritchie Shoemaker, MD:  And what illness has complement involved and proinflammatory cytokines and antiinflammatory cytokines and genetic susceptibility and TGF-beta1 and then complement?  What has all of those at the same time?  Well, our good friend sepsis.  It’s an acute inflammatory response syndrome, and I said what a minute.  That is called SIRS, or systemic inflammatory response syndrome.  In 2010, a group of people working in the mold field published the consensus report of expert treating physicians for mold, and we call this illness a chronic inflammatory response syndrome.  It didn’t go away on its own, but it was caused by exposure to water-damaged buildings.

So the long answer — sorry for the long answer — is, CIRS is in the jargon, it’s in the books, if you type it in on PubMed you’ll get a lot of hits and a lot of things to read about, but that, in a nutshell, is short of where we were, and I know we’re going to talk about where we’re going.

Chris Kresser:  Absolutely.  Thanks for that.  It’s really important to get some of the historical perspective because I think that helps to shed some light on the context and where we are now with it.

How people get exposed to biotoxins

Let me break down just my understanding of this, and then maybe we can talk a little bit more about biotoxins and how people get exposed.  This can be complex for people who are new to it, so I just want to give a brief summary, and of course, you can correct me if I’m wrong, but it basically starts when someone is exposed to a biotoxin, and in most people, this isn’t necessarily a problem.  They might feel sick while they’re exposed, but then the biotoxin is tagged and identified by the immune system and broken down and removed, and this is a normal physiological process.  But in some people who have certain HLA genetic haplotype, they are unable to recognize those toxins as toxins, and those toxins get recirculated and they trigger this ongoing chronic inflammatory response, and those people remain sick even after they’ve been removed from exposure for years or even decades in some cases.  Is that an accurate summary?

Ritchie Shoemaker, MD:  It sure is.  It might help a little bit to think about the immune system as having a left hand and a right hand just for the sake of a visual analogy.  The left hand is where we think about traditional immune responses, and you’re talking about antibody production, which is defective in this illness but not in classical asthma or hayfever or that kind of thing, what we think about antibodies as being overproduced in so many autoimmune illnesses as well.

Here is the other hand of the immune response where inflammation is created by structures called receptors that are designed to recognize foreign antigens, foreign invaders coming from the environment.  We breathe them in, sometimes we eat them, sometimes they get inoculated beneath our skin, but the issue is that these structures are not us.  Because they’re foreign, there is this innate immune response, just like we talked about in sepsis, reacting to a toxin made by usually gram-negative bacteria, setting off so many cascades of inflammation.

So when we start thinking about complexity, this illness has way more than what people will think about when they get a cold or when they have a bowel problem, what have you.  This is looking at every inflammation response system, essentially, that there is in the body.

Chris Kresser:  Yeah.  You mentioned earlier on a couple of examples of biotoxins — Pfiesteria, Ciguatera — but it’s not just limited to those and to mold toxins, is it?  There are quite a few toxins that have been identified so far that can contribute to CIRS.

Ritchie Shoemaker, MD:  The list grows every day.  A few years ago, I was at a conference on biowarfare, and one fellow from Togo got up and says, “Is Buruli ulcer, a disease of the tropics, a biotoxin illness?”  And I had never heard of Buruli ulcer, and it was not published back then that an unusual mycobacterium called Mycobacterium ulcerans — not Mycobacterium tuberculosis; most people have heard about that one — but this organism makes a biotoxin called a mycolactone, and as such, it creates this spreading superficial ulcer that won’t heal and knocks out white blood cell response.  And guess what?  Good old topical cholestyramine will fix it.

You might have some recluse spiders out there in California or some that act like that.  I know lionfish can be popular aquarium items, and they make their own biotoxins.  Lyme sure does.  We know that Babesia makes a toxin that’s called GPI — glycosylphosphatidylinositol, for all the crossword puzzle lovers — but the real issue is that we’re not looking at an unusual finding at all.  New biotoxin formers are being identified, it seems, just about every day.  We know that with the growth of red tide.  We know with the change of sea lion populations on the West Coast that some of the diatoms are making unusual biotoxins as well.  These compounds are made by biological creatures, hence their name, but they’re small.  They can move from cell to cell.

Tetanus is a living bacterium.  It makes a toxin.  We all know about tetanus, and we know about gangrene and botulism.  Those compounds aren’t called biotoxins even though they’re made by living creatures because they’re so big and they don’t move from cell to cell.  But moreover, these organisms make compounds that not only move from cell to cell, but they set off inflammatory responses.  They are recognized as being foreign invaders.  So there’s a whole series of things that go together with what biotoxins are, but you can’t have a biotoxin without inflammation.  You can’t have inflammation without a biotoxin.

Chris Kresser:  So if we could break these down, these biotoxins, into categories based on where they’re encountered, I’ve heard you say there are three subtypes.  There might be CIRS that you acquire from biotoxins that you would encounter in a water-damaged building.  These could be mold mycotoxins.  Then you have CIRS that you can encounter from Lyme and other tick-borne diseases, like Babesia, which you just mentioned.  And then you have biotoxins that you might encounter from dinoflagellate and algae sources.

Ritchie Shoemaker, MD:  Klamath Lake used to be one of the resources used nationally and internationally as a source of spirulina, blue-green algae.  Wayne Carmichael, who retired and lives now in Oregon, kept on warning people, “Look out.  Spirulina can be contaminated with microcystins,” and sure enough, it now is.  I think the growing force of cyanobacteria or blue-green algae illnesses, especially in areas that have cycles of drought and flood like California seems to be going through right now, are going to explode.  We see the same thing in Florida, we see the same thing in North Carolina, but interestingly, the worst of the cyanobacteria can either be in some of the Great Lakes — and Lake Erie was in the news last year about that — but then we look in Nebraska and Kansas and Montana, areas that are outside, way far away from buildings where you would have indoor toxins.  And you’re right; mycotoxins have a role, but inside buildings we have bacteria making toxins, we have actinomycetes making toxins, and then we have a whole host of compounds that by weight and by mass are far, far more important than, say, mycotoxins.  And these will be things like beta-glucans and mannans, so don’t be surprised when you hear more and more about biotoxins, especially as we have kind of dried-up lakes coming back to life in California.

Chris Kresser:  Right.  Well, let’s talk a little bit more about water-damaged buildings because I think a lot of people are initially surprised, at least my patients when I tell them how common water-damaged buildings really are, and you’ve done some great research on this and talked about it a lot, so what do you say to the person who says, “I live in Phoenix or Las Vegas, and mold can’t possibly be a problem to me because it’s so dry here.”

Ritchie Shoemaker, MD:  Well, it’s an important point, in that I just simply say, “Do you live indoors?”

Chris Kresser:  Right.

Ritchie Shoemaker, MD:  “Do you have plumbing?  Do you have a roof?  Do you have a swamp cooler?” — a funny air conditioning mechanism that’s guaranteed to make people ill.  And the guy says, “Well, yeah.  They never hurt anybody.”  And I say, “Well, as a matter of fact, they do.”  Once you create environments of additional moisture, unwanted moisture intruding into what we call the building envelope — that’s the roof and the walls and the floor and the windows and all the accoutrements that go with homes — once you have that water intrusion, you create microhabitats.  And then actually to think about it, whether you’re in Phoenix, where it might be 120 — but a dry 120 — outside, it might be 65 to 75 inside, and that’s not going to be so dry if your roof leaks or if you have the wrong size HVAC equipment so you never dry out the air.  So even areas that you would never dream to be a problem are at just as high a risk to be moldy as if you lived in Hurricane Alley down in the South.

Chris Kresser:  Did you see that in your practice when you were treating patients, that the distribution of CIRS didn’t follow a particular geographic pattern?  Or did you find that it was more concentrated in particular areas?

Ritchie Shoemaker, MD:  People would not travel from the Southwest much to Pocomoke — it’s hard to get to; you have to fly to Philadelphia or Charlotte and then to Salisbury — unless there was a really good reason, so I had fewer patients from the Far West, but interestingly, they were sicker.  And the key issue to me was that they had, I think, underestimated the possibility of acquisition or exposure because of this idea that the outdoors is the only criterion.  And there are a few people that truly are sickened by the outdoors — and in our conference, which we’re going to have in Phoenix, you’ll hear from Erik Johnson, who has done some wonderful observation work — but the vast majority of people are not sickened by outdoors.  They’re sickened by indoors.

Chris Kresser:  Mm-hmm.  So what are the statistics?  What proportion, on average, of buildings are water damaged?  Are we talking about 5%?  Are we talking about 50%?  I think I recall something around 30% or 40% from one of your talks.

Ritchie Shoemaker, MD:  If we are going to believe the researchers from NIOSH, the National Institute for Occupational Safety and Health, in 2011, they tried to answer that question and came up with 50%.  The answer for people who have been sickened, who have particularly adverse and increasingly susceptible HLA types, is that when they’re told they have to move out of their home or workplace or school — which is a devastating directive to give as a physician; it’s very expensive to give up your home, very expensive to give up your job — but when they finally buy into this idea of I have to leave, then you start seeing, “Well, I went to the apartment complex.  It had a flat roof, and I was looking at a flat that was below grade, so I was in the basement.  And there was no evidence of any water, just a musty smell all the time, and I got sick within two days.”  Someone else would say, “Well, I left my job and I worked on Figueroa Street with all those big tall high-rise buildings in downtown LA, and I had no idea the women’s bathroom on the sixth floor flooded all the time, and I was on the twelfth floor, and I was getting sick from the air in there.  There was nothing wrong with my building at all.”  And then the fellow from Chicago says, “I couldn’t be sick from my building.  It’s a brand-new structure.  It was build lickety split, just the finest in workmanship.”  I said, “Oh, really?  And built lickety fast?”  “Well, yeah.”  I said, “Well, how many plumbing leaks are there?  How much wallpaper is put up that won’t let air breathe through a wall?”  And how much and how much and how much?  You start to find out that easily 50% of the buildings in the US, whether they’re homes or workplaces or especially schools, are ones that will make previously affected people ill.

Now, newly exposed people, the numbers are not quite so much.  There has to be an intervening illness that almost primes or sets off the susceptibility of the HLA, and in those people, we’re back down to our 24% incidence of people with new kinds of illnesses.  And every time we screen large numbers of people, whether teachers and students in a school or workers in a building, 24% shows up, and that parallels with greater than 95% certainty the HLA types.  So if you say, “I don’t have a mold-susceptible HLA.  What are my chances of getting sick?”  Less than 5% is the right answer there.  But if you do have an HLA that’s susceptible — and there’s six different kinds that are really rough on you — you have a 95% chance of developing it.

So if we look at 24% of the population found in 50% of the buildings, golly, we’re down to about 40 million people that are theoretically at risk.  They’re walking around saying, “I’m a little tired because I’m stressed or maybe I’m having some trouble at work or maybe I’m having trouble at home.  My daughter or daughter-in-law, found out she’s doing heroin now, and boy, I’m just having trouble.”  And the guy says that to the doctor who doesn’t take a history of the multi-system, multi-symptom illness, on the antidepressants they go and away goes another patient misdiagnosed.

Chris Kresser:  Yeah, and it’s only going to get worse from there.  This is certainly a huge problem.  As you know, we’ve been addressing this in our practice for the past six months or so, and I think I’ve yet to see an HLA test with someone who didn’t have a mold-susceptible gene.  And of course, I’m treating people who are very sick, so it’s not a representative sample of the general population, but I was somewhat shocked even to see just how common this genetic susceptibility is in my patient population.  And of course, as you also know, this is something I’m dealing with myself and have a great personal interest in, but it’s just really remarkable to me to see the percentage of sick people that are susceptible to CIRS.

Ritchie Shoemaker, MD:  I deal with a lot of physicians in similar stories.  Oftentimes it’ll be a loved one or a personal illness or a family member that kind of gets them clued into looking into what may be true, but let’s be fair here, Chris.  You have picked up on this illness rapidly and aggressively, and quite frankly, compared to just about everybody else that has gotten into this field, you’re running with it with more authority and, quite frankly, courage, so if I can give a little tip of the hat and a shoutout to you, let me do that because I mean every word of it.

Chris Kresser:  Well, thank you.  I appreciate it.

Who is susceptible to exposure?

So let me just take a step back because I know for some people some of this might be going over their head.  As you just said, there are kind of two components to determining who is susceptible to this.  One is having a certain genetic haplotype, and as you said, that’s present in about 24% of the population.  But that’s not enough alone.  You also said there has to be a sensitizing event or illness, so what kinds of things are we talking about there?

Ritchie Shoemaker, MD:  To put this in perspective, we’re born with our given HLAs.  We can’t change our HLAs.  But given the HLA and, say, exposure to elementary school, high school, what have you, many people will not be sickened until they have one kind of illness that’s dominated by a lot of inflammation.

In Mold Warriors, I put out the story of Libby Kyer, a famous artist living on the Front Range in Colorado.  She was fine, almost had a spring running through her basement with mold everywhere, but it never bothered her until she had a terrible CMV pneumonia and was in the hospital.  They were going to put her on a respirator, and she comes home to recover only now to be slammed by what’s been in her basement for years.

The post-Lyme syndrome is a real bugaboo for folks who live in Lyme-endemic areas because they struggle to get better, struggle to get better, not knowing the inflammation from Lyme has set off their HLA susceptibility, and now if they’re exposed to a water-damaged building, they’ll get sick, but they wouldn’t have before Lyme disease.

Chris Kresser:  Right.

Ritchie Shoemaker, MD:  There are some other things that are a little unusual.  You think about mono and I mentioned CMV, but Epstein-Barr virus is one that gets a lot of play in the chronic fatigue world.  HHV-6A and HHV-6B get a lot of play in the chronic fatigue world, bornavirus as well, but these are all inflammatory illnesses, and once you recover, people develop the post-bornavirus syndrome and the post-EBV syndrome, and some people think that these viruses are very important, and yet what do they do?  They set off defective antigen presentation.

It could be an enterovirus, coxsackie and echoviruses.  My good old friend, the unusual illness name, my favorite name, Kawasaki’s disease.  And when I say that, people make jokes about motorcycles, but it’s no joke if you are getting an aneurysm from Kawasaki’s disease.

It could be even, of all things, multiple yellowjacket stings.  We’re seeing some folks who take an antibiotic, Cipro, are developing these kinds of inflammation.  The Gardasil vaccine for those that are 11-3-52B, fortunately only about 1% of the population, but this can be devastating to young women who take Gardasil if they have that particular HLA makeup.

So there’s not a limit to inflammation-causing illnesses to result in activation of HLA, and whether that occurs at 5, 15, or 55 is only predicted by what is going on with the immune responses.

Chris Kresser:  Mm-hmm.  OK, so we have this genetic predisposition; we have an inflammatory illness that triggers it.  Now I want to talk a little bit about the signs and symptoms here, but as a framework, I want to go through the biotoxin pathway because I think understanding, at least in broad terms, how CIRS affects the body physiologically can help people understand how it’s possible that it could cause such a wide range of symptoms because it’s really vast.

We’ve talked about Stage 1, which is biotoxin effects, you know, get exposed to a biotoxin and then people with this genetic haplotype can’t get rid of it.

Stage 2 is the cytokine effects, where you have this whole cascade of things that happens from elevated cytokines.  So tell us a little bit about the symptoms that we might see in this stage with the cytokine effects.

Ritchie Shoemaker, MD:  The classic story is people who develop flu-like symptoms.  You have an influenza virus or one like that, and you know you’re getting sick.  You don’t feel good.  Your coworkers say, “Are you feeling all right?  Your eyes don’t look right.”  You get a headache, and you get a problem with being tired.  “Gosh, I can’t get my head off of my desk.”  And your muscles are aching.  “I need to go home.  I need to lie down.  Give me some chicken soup,” or whatever you’re going to do.  But this is the type of response that goes with proinflammatory cytokines.  There is going to be a nearly immediate, maybe 4 to 8 hours’ lag time before there is a compensatory anti-inflammatory cytokine response.  And here is the time where you have IL-4 and IL-8 and IL-10 and IL-13 come pouring out to knock out those bad proinflammatory cytokines, and here’s where people start noticing the chills and fever and these shaking issues.  This is the cytokine warfare, this storm going on throughout you, and if you heal that storm, the chills and fever go away, a day or so goes by and most people will say, “Boy, that was rough.  I lost a weekend.  I slept for 12 hours.”  That is a situation where our protective anti-inflammatory mechanisms worked.

But what if there is a complication from a cytokine event early on in the course of the illness?  This cytokine activity can actually bind in the brain to a receptor for the most important calming neuroregulatory peptide called melanocyte-stimulating hormone, MSH.  MSH will correct innate immune excess beautifully if it’s present in normal levels and normal amounts.  But cytokines bind to the receptor that is needed to make MSH, and if those cytokines log on and stay attached to the receptor in the hypothalamus, you now will go to the second phase where you have your IL-10.  Your anti-inflammatory cytokines now don’t have anything to regulate them.  They will initiate additional cascades, C3a, C4a coming out within 4 to 24 hours, TGF-beta1 coming out within 16 to 24 hours.  So in terms of symptoms, it doesn’t take too long before a headache and muscle ache and feeling bad and red eyes turns into exhaustion to the point that you can’t get your head off the pillow, and someone looks at you and says, “Well, you look fine to me.”

Chris Kresser:  Right.  And a lot of the typical labs that might be tested aren’t necessarily out of range either because, of course, most physicians aren’t testing for MSH, they’re not testing for MMP-9 or TGF-beta1 or C4a.  I often see patients who have CIRS, who have been to 15 or 20 different doctors and they’ve had the basic workup, and they’re told that they’re normal.  This is a common story I’m sure you encountered plenty of times, too.

Ritchie Shoemaker, MD:  One of the fascinating issues is this attitude — and I sometimes will pick on physicians that believe what they say.  They make an assumption, and they assume that the assumption is correct.  I call it ass-squared medicine.  Assumptions of assumptions are a problem.  But there’s also an attitude that says the physician is the keeper of all knowledge, and if he doesn’t know what the illness is, therefore the illness is psychiatric.

Chris Kresser:  Right.

Ritchie Shoemaker, MD:  That’s one of the most poisonous attitudes of all.  Fortunately, and I know as you’re getting into NeuroQuant, you’re starting to see that there is an answer to the psychiatric diagnosis.  I mean, show me the blood test for depression, will you?

Chris Kresser:  Right.

Ritchie Shoemaker, MD:  How about manic depressive illness?  Or how about somatoform illness or malingering?  Show me that on a blood test.  Well, we now can show CIRS in the brain sorted by the kind of illness that engendered the difficulty with executive cognitive function and anxiety and depression and all that.  It’s absolutely fascinating then to initiate treatments for the proper illness of inflammation because you can do the tests.  These tests are all covered by most insurance companies, and you can check with Medicare.  They’re getting a little pennypincher.  But the real issue is that once you show that there’s inflammation, you can image the brain and show that these cognitive issues previously blamed on psychiatric causes are actually just due to plain old inflammation.

Chris Kresser:  Or aging, right?  Just getting older.

Ritchie Shoemaker, MD:  Yeah!  I get to hear that all the time now.  You youngsters.

Chris Kresser:  Yeah.  OK, so we have Stage 2, the cytokine effects, and essentially you feel like you’re sick all the time.  You feel like you’re getting a flu.  And when I explain it that way to patients, there’s a light that goes on and they say, “That’s exactly how I feel all the time!”

Then we move into Stage 3, which is reduced VEGF, and this is vascular endothelial growth factor.  So tell us what happens when VEGF levels go down.

Ritchie Shoemaker, MD:  When I made up the biotoxin pathway initially, it was without information about TGF-beta1.  TGF-beta1 is one of the fast reactors, as if VEGF, and if there is a problem with a reduced delivery of oxygen in the capillary beds, so-called capillary hypoperfusion, VEGF will be released.  It has the job to increase oxygen delivery, and if it’s around long enough, it’ll increase formation of new blood vessels.  That’s why VEGF is a big deal in cancer and anti-VEGF drugs are wonderful cancer chemotherapy agents, but low VEGF is so common in this illness because initially capillary hypoperfusion from cytokines comes pouring out.  VEGF rise triggers TGF-beta1 to come out secondarily.  It suppresses VEGF.  So now this milieu of low oxygen delivery inside the matrices of delivery factors for cells, now it’s complicated by worsening of oxygen delivery.

You hear a lot of people saying, “Well, I have a mitochondrial illness.  I have this wrong with mitochondria.”  If you’re not giving oxygen to the poor mitochondrion, it’s not going to do what you want.  It’ll only make 5% of the energy, or ATP, from each glucose that you have.  So if you start needing to move around and you have a low VEGF and you have all this inflammation, you’ll burn up your glucose like crazy.

Chris Kresser:  Right.

Ritchie Shoemaker, MD:  If you’re like most people with this illness, as MSH starts to fall, leptin can try to drive MSH, and leptin can rise, making people get heavy.  And it does so by protecting fat stores so that the poor body — remember, someone is not feeling good.  They got out of bed and tried to make a cup of coffee and had to sit down without even making a piece of toast or an egg or anything, and they try to do something more.  They are now burning sugar until it’s gone.  When they burn sugar up, they tell their body protein to break down into amino acids.  Two of them, alanine and glutamine, are pretty quickly converted over to sugar.  So the guy can get through a day, but he’s burned his sugar reserves and now he’s burning protein as well.  He’s losing lean body mass, but he’s gaining fat mass.  So this illness is now in a stage with reduced VEGF.  Now we have metabolic processes.  As MSH declines, so too does the level of beta-endorphin made when MSH is made, so we have chronic pain, chronic fatigue, and unexplained weight gain that will never go away.

Chris Kresser:  That’s fascinating, and this is something I haven’t asked you about, but it just occurred to me, and it makes perfect sense.  If you have a hypoxic situation where energy production isn’t able to occur or it’s limited and there’s a shift to anaerobic energy metabolism, do you see a corresponding rise in lactate and other markers that you would expect to find in some mitochondrial conditions?

Ritchie Shoemaker, MD:  I told you you’re perceptive.  I really meant that.  We measured lactate in the brain using MR spectroscopy before we had NeuroQuant, and that was one of the most sensitive indicators of capillary hypoperfusion.  We saw as a consequence of lactate elevation we had a reduction of glutamate, the excitatory neurotransmitter, to glutamine, which is an inhibitory transmitter, and that was one of the elements that compounded this brain fog and confusion that people had.  And even before we could show damage to gray matter nuclear atrophy — and we can show that — we were able to show the high lactate had direct measurable correlates in the central nervous system.

Chris Kresser:  Yeah, that is really fascinating.

OK, so Stage 3 was reduced VEGF, and Stage 4, we go into immune system effects, inappropriate immune responses, which could include antibody production to gliadin, AKA gluten sensitivity, autoimmune conditions like antibodies to actin or ANCA, like ulcerative colitis, cardiolipins.  And what’s really interesting to me is there have been a number of triggers identified already for autoimmune disease, but here we’re talking about CIRS being a trigger for very common autoimmune diseases, and it’s rarely investigated as a potential underlying cause — and even more than that, a treatable cause.

Ritchie Shoemaker, MD:  Well, that’s, once again, very perceptive.  Now that we know that TGF-beta1 levels as they rise are acting as one of the controlling mechanisms in this illness, it will send — remember we talked about the good guy, T regulatory cells — it will send Tregs into tissue to suppress inflammation and suppress autoimmunity, and that’s exactly what it does unless in CIRS there’s reduction of a tissue-based component, another acronym, retinoic acid orphan receptor, or ROR.  If your ROR is low and the Tregs come in, those cells are plasticized.  Here’s the tissue basis of CIRS, and these cells, as they’re plasticized, are turned into T effector cells that worsen inflammation, worsen autoimmunity, and stimulate increased production of TGF-beta1, which — guess what? — in return, will send more Tregs into tissue.  Remember I told you about the Treg imbalance with TGF-beta1.  Hugely important in this cascade of illnesses because if you’re trying to fix, say, a Lyme patient with post-Lyme syndrome and you don’t fix their Tregs, they will never get better.

Chris Kresser:  Have you actually had situations, then, in your practice where you’ve seen gluten intolerance and other autoimmune conditions resolve after taking a patient through the various steps of the protocol?

Ritchie Shoemaker, MD:  Oh, absolutely.  It’s one of the things that’s kind of hard to tell other people.  If you think that you have the non-celiac gluten intolerance syndrome — and Alessio Fasano, who is kind of the father, in my mind, of the immune thought about celiac disease, is really looking at this more carefully.  MSH is hugely invested throughout the GI tract, and in MSH-deficient states, Tregs are allowed to reside just underneath the tight junctions primarily of cells in the jejunum and ileum, and they loosen those tight junctions to the point that gliadin — remember that’s about an 18-amino-acid piece, a fairly large molecule, as far as the body goes — can actually get beyond the tight junctions.  They’re loosened from zonulin and all this, but they get into the Tregs.  The Tregs say, “Here’s a foreign invader,” and they set off this autoimmune response to gliadin.  It all comes from eating gluten, but when you break down the mechanism, the mechanism is MSH deficiency, which comes from early on in the stages of reduction of MSH due to cytokine excess.

Chris Kresser:  Yes, Dr. Fasano is an incredibly sharp guy.  We had him on the podcast a while back, but at that time, I didn’t know anything about CIRS or MSH, so I didn’t get a chance to talk to him about that.  I didn’t know he was investigating that as well.  That’s really interesting.

So this takes us through Stage 5, actually, because this was low MSH, and as you said, I mean this was one of the big aha moments for me when I learned about this, is how low MSH can actually be a major contributing factors for leaky gut.  Because what I was noticing was that patients that we had in the practice, we would do all the things that we normally do to address gut health that are usually helpful in most cases, but in this subpopulation of patients that we had, they just weren’t getting better, and their gut was not responding to any gut treatment.  And I think this has been one of the missing pieces, that we weren’t at that time looking at CIRS or MSH as a contributing factor.  So no matter what these patients ate, no matter what we did about other gut problems they had, like SIBO, they would continue to have symptoms, and I’m really excited now to be investigating this further because I do think that MSH is a big player here.

Ritchie Shoemaker, MD:  We’ve talked about MSH more than once on this discussion, and there certainly is a lot we could add in, but somewhere we have to recognize that MSH is a compound that’s being intensively investigated.  There’s a pharmaceutical company that went public with their IPO and generated $170 million to research MSH.  It’s a very small protein compound.  They never came up with anything in six years, despite raising all that money.  They sold the rights in 2007, I believe it was, to an outfit in Korea for $500 million, and still we’re waiting for a medication to do what MSH does.  It suppresses inflammatory responses.  It suppresses cytokine changes.  It corrects so many problems with surface and immune function and mucosal immunity.  It stabilizes so many hormones that are way out of whack in this situation.  Whether it’s ADH and osmolality or ACTH and cortisol or androgens, MSH is kind of the master player along this way.

But there’s another master player that does similar kinds of things actually and more, called vasoactive intestinal polypeptide, or VIP, so that while we can’t get MSH legally in the US and the FDA is pretty fussy about what it’s going to let us do, we can get VIP.  So every time I’ve mentioned MSH, if you have a transcript of this discussion, just substitute VIP in for what I said for MSH and recognize that all in due time, at the proper time in this protocol, we can step in with VIP and correct these abnormalities.  And more importantly than fixing the autoimmunity of gliadins and fixing ulcerative colitis and all that, we also know we can fix the underlying changes in the human genome created by inflammation.

Chris Kresser:  Which is just so fascinating and exciting.  My audience knows that one of the principles of functional medicine is getting to the root of the problem instead of just dealing with symptoms or downstream effects, and you can’t go really any more fundamental than that, than what VIP is doing with the genome.

Ritchie Shoemaker, MD:  I don’t want to jump in and disrupt kind of how you planned this discussion, but now that we know — and preliminary results of a paper we’ll be publishing in about two months — now that we know that not only can we correct regulation of gene transcription — that’s an important element — but we also can correct regulation of regulation of gene transcription.  This is a whole other layer of control where we are seeing disruption of normal activity of regulation of regulatory elements.  Chris, I’m sure you read through the genomics paper I published in April of this year.

Chris Kresser:  I did.

Ritchie Shoemaker, MD:  It’s a whole new world of gobbledygook, and if you start thinking that, “I’ll just read through 25,000 protein-coding genes and memorize those acronyms,” I’ve got news for you — it’s not going to happen.  So as we go forward, we have to be letting your audience know that, yeah, the blood tests we measure in the blood, or proteomics, are incredibly important, but the genomics go hand in hand, and if you’re looking for the ultimate cause, this lack of regulation of regulation of gene transcription is where we are.  That’s where epigenetics is living.  That’s where a final return to a healthful state needs to be.  It’s in our radar sights right now.

Chris Kresser:  Well, I’ll definitely have you back on the show to talk more about genomics and PAXgene analysis and NeuroQuant and VIP and some of the treatment part of this.  There’s so much, of course, that we could talk about.

We’re nearly through with the biotoxin pathway.  Stage 6 is MARCoNS, and this is a good segue because we’ve been talking about low MSH and the downstream effects of low MSH, so tell us a little bit about MARCoNS — you mentioned it earlier in the show — and what happens when someone has a colonization of antibiotic-resistant coagulase-negative staph in their sinuses.

Ritchie Shoemaker, MD:  Remember the first time you were a medical student and you drew somebody’s blood.  They had a heart valve condition and they were doing poorly, and you were asked to do the work, and back from the laboratory came a report of a skin organism, a coagulase-negative staph.  Maybe it never happened to you, but it happened to me, and the attending would say, “What’s the matter?  Didn’t you clean the skin properly, stud?”  And come to find out now if you have an artificial hip or some prosthetic joint put in or if you have a heart valve that’s been installed, the third most common cause of those hips and heart valves needing to be pulled out are these coagulase-negative staphs that form biofilm, and they laugh at the idea that they’re benign.  So does the guy who had to have his chest cracked a second time.

The group at Newcastle University in Australia between Sydney and Brisbane were the first that I know of to publish in the world’s literature showing these organisms make a compound called a delta toxin that breaks down MSH by itself.  They also will cause a change in these organisms and start making antibiotic resistance factors, and curiously enough, as they make compounds they send out from their biofilm — you know, biofilm is like a polysaccharide or a sugar igloo that lets these little organisms that should be swimming around like planktonic forms, being very nice and happy by themselves, in a group they will have differentiation of function.  It’s fascinating.  Why these organisms can live as a group together is curious, number one, because everybody was independent to start, but they start living like a multicellular creature by some organisms having genes turned on and other ones turned off, and they go around and round and round, making these extracellular products that are genomically active, that knock out MSH, that foment inflammation, all the while sitting in the back of your nose, not announcing to anyone in the world that they’re there.  The Australian group found them.

We do nasal cultures with a special lab technique that stops the overgrowth of these slow-growing organisms.  Normally if you try to put those onto a culturette, what’s normally in the nose will just grow so fast, the biofilm former hadn’t even woken up to get out of its biofilm to, say, make a new cell, so your culture comes back negative.  But we now know that specific of these coagulase-negative staphs not only must be eradicated to return to health, but can be reacquired with re-exposure to water-damaged buildings or to loved ones who have these organisms or to, of all the things, the family dog.

Chris Kresser:  Right.  All right, so finally we have pituitary hormone effects, which, of course, can cause a just shockingly diverse range of symptoms because the pituitary governs all hormone production in the body and hormones regulate just about everything.  What are the main players here, and what are some of the characteristic symptoms?  One that comes to mind is the electric shocks from static electricity, a red flag symptom there for CIRS.

Ritchie Shoemaker, MD:  I can remember when I used to collect data on ACTH And cortisol.  I would see some people with an ACTH of 100 and cortisol of 25.  You’d go, “My god!  He has an ACTH-secreting tumor!”  And I said, “Well, I’ll fix the CIRS first and then see what happens,” and guess what?  ACTH would return to normal.  Cortisol would return to normal.

Or someone who was told they had adrenal fatigue or some idea like that with very low ACTH and low cortisol, and lo and behold, as you fix the inflammation, that returns to normal as well without poisoning the person with extra cortisol.

We saw the same thing with testosterone.  Levels were low and because the enzyme called aromatase is upregulated like crazy, we saw high levels of estradiol, all due to little MSH.  And without adequate MSH effects on gonadotropin, you never had normal testosterone pathways, so it was disaster if people took, you know, a little bit of testosterone to try to improve that.

But over 75% of patients will have a problem with antidiuretic hormone.  You’ll see these folks, and they say their headaches are migraines that last a week.  Well, that’s not a migraine.  You’ll see them in the cardiologist’s office with a positive tilt table because they’re volume depleted with low ADH because they’re not holding onto free water.  They walk around with high levels of osmolality.  Their headaches are there from the salty blood.  They’re tired because when they stand up they start feeling weak, woozy, and wobbly, and they’re told they have POTS syndrome if they have pulmonary hypertension and low VIP along with it.

But you’re right.  The best symptom of all — one day I had two people tell me that they turned on a lightswitch with their elbow, and I said, “What in the world would you do that for?”  It was not in any book, and I had read the book and it wasn’t there.  And they said, “No.  It hurts a lot less when I get the static shock on my elbow compared to my fingers.”  I’m going, “What.  You have a bad light switch or something, grounding?”  “Oh, no, no.  It’s doorknobs, on a car, outdoors, and people and drinking fountains.”  I’m going, “Wait a minute.  How in the world does this person have an electromotive force on their skin being discharged to ground,” and so I took a wild-ass guess and said, “Let’s measure their electrolytes in their sweat,” because we do that with cystic fibrosis.  The highest chloride levels you find there are in cystic fibrosis.  But the levels of chloride in these folks with static shocks was even higher!  They were batteries on their skin.  It was all because without ADH they lost free water, the blood got saltier, the sweat gland poured out extra salt onto the skin in an effort to bring the osmolality back to normal, and that all worked fine until the person tried to open a door.

Chris Kresser:  Yeah!  And that’s a memorable symptom.  It’s not one you’re likely to overlook once you tune into the fact that it can be a red flag for CIRS.

Ritchie Shoemaker, MD:  You know, if your listeners are paying attention, and I’m sure they are, they’ll probably say, “You know, I have that as well.”  And yet when you as a physician ask a patient, “Do you notice that you get an increased frequency of static electrical shocks?”  They’ll look at you with this, “How did you know?!”

Chris Kresser:  Yeah, it’s amazing.

I want to wrap up because we’re nearing the end of our time here.  I’m definitely going to have to have you back at least once, if not more, because there’s just so much to talk about here, and I think this is so significant.  Like I said before, we’re seeing it so commonly in our practice, and I just want to finish up by saying a couple of things.

First is that Surviving Mold, which is Dr. Shoemaker’s website, is just an incredible wealth of free information.  When I first discovered that website, I think I spent about three hours on it, reading everything I possibly could.  You can get a ton of information there, and I highly recommend that you visit if you’re interested in this and you think you might be dealing with this syndrome.

The second thing is Dr. Shoemaker has several books, and those you can also learn more about in the store.  The most recent, I believe, is Surviving Mold: Life in the Era of Dangerous Buildings, which I’ve read and is a great introduction to this subject if you’re new to it.  Is there anything else that you would like to tell folks that are new to this and who are just kind of dipping their toe in the water in terms of initial resources to check out?

Ritchie Shoemaker, MD:  Your listeners may know more about surfing than people who live around me.  A big wave here is 4 feet.

Chris Kresser:  Yeah!

Ritchie Shoemaker, MD:  We’re like the rider who is on the crest of the wave as it starts to curl.  There is a huge cascade of inflammation — and if that’s water in this analogy, so be it — but this inflammation is going to explode.  It’s not just the genomics.  It’s going to be use of medications to correct genomic abnormalities.  So sure, learn the basics, get past the jargon problems.  There must be 50 YouTubes if people want to use that for some learning.  If you want to buy a book, Surviving Mold: Life in the Era of Dangerous Buildings.  I call it Mold and Peace because it’s too long, but at the same time, there is so much new, and the key issue for me is there also is a lot of material that you might hear from the internet or out in the world that’s just plain wrong, so stick with material that is based on science, that’s been peer-reviewed and published.  We’re not guessing.  We’re not playing games with people’s lives here.  We’re looking at what is real and what can we do to restore lives of our patients.

Chris Kresser:  That’s exactly what this is all about.  Dr. Shoemaker, thank you so much for being here, and thank you so much for the incredible contribution that you’ve made in this field.  It’s just astounding to me the way that you’ve put all of these pieces together over the years, and as a clinician treating patients — I know that you know this — it’s such an empowering thing to have a new framework or understanding that can offer hope to people who have basically been hopeless and have lost all hope that they could ever get well, and that’s really what I live for, is being able to help patients like that to recover their health, so thank you for playing such a big role in that discovery process for me.

Ritchie Shoemaker, MD:  Well, your words are very kind and they’re much appreciated.  I was getting goosebumps when you were talking because to me it’s clinicians like you coming along, replacing the old guys like me.  It’ll be you that takes this to the next layer.  It’ll be you that takes the next step.  It’ll be the Kressers of the world that truly are giving far more than what I have learned.

Chris Kresser:  Well, thank you again, and I look forward to having you back so we can geek out even further on NeuroQuant and VIP and PAXgene analysis.

Ritchie Shoemaker, MD:  Sounds good to me.  Thank you so much for your time.  Bye now.

Chris Kresser:  Take care.  Bye-bye.

Update: See my next interview with Dr. Shoemaker: RHR: Genomic Testing for Chronic Illness—with Dr. Ritchie Shoemaker

That’s the end of this episode of Revolution Health Radio.  If you appreciate the show and want to help me create a healthier and happier world, please head over to iTunes and leave us a review.  They really do make a difference.

If you’d like to ask a question for me to answer on a future episode, you can do that at ChrisKresser.com/PodcastQuestion.  You can also leave a suggestion for someone you’d like me to interview there.

If you’re on social media, you can follow me at Twitter.com/ChrisKresser or Facebook.com/ChrisKresserLAc.  I post a lot of articles and research that I do throughout the week there that never makes it to the blog or podcast, so it’s a great way to stay abreast of the latest developments.

Thanks so much for listening.  Talk to you next time.

 

105 Comments

Join the conversation

  1. I’m confused about VEGF and TGF-beta. In your interview Shoemaker says that TGF-beta suppresses VEGF, but all the papers I can find say that TGF-beta increases VEGF by stabilizing HIF.

    Can someone clear this up for me?

    Some papers that say TGF-beta increases VEGF:
    [https://www.ncbi.nlm.nih.gov/pubmed/11678207]
    [http://www.jbc.org/content/281/34/24171.abstract]

  2. Hi,
    Do you have any recommendations for drawing a Complement C4a in NC? Quest does not send to Jewish Natl Federation laboratory from NC and there is no other option as far as C4a goes with Quest here. Thanks!

  3. I guess I am having mold sickness.
    My brain feels inflammatory .
    I am dizzy and have imbalance.
    Please let me know how to detox my body.
    Also should I have Braggs Apple cider vinegar.
    Thanks

  4. I am one of Dr. Shoemaker’s former patients and can’t say enough great things about him. Thanks to him I have recovered from really severe illnesses related to toxic mold in my home. That was about ten years ago and I’m amazed at how much more he’s discovered and how much more I learned from this interview. And thanks to people like you, Chris, I have hope that more and more doctors will come on board and realize this isn’t quack medicine–that there really is something exciting and beneficial happening for all those suffering unnecessarily.

  5. Very interesting! Does anyone know if it is possible to test for the HLAs Dr. Shoemaker is talking about in Europe?

  6. Appreciable”” “Ritchie Shoemaker on Chronic Inflammatory Response Syndrome” Incredible podcast! You said ciguatera in there. I gained ciguatera by eating grouper here in the Bahamas. Lamentably our wonderful reefs are extremely debased by the terrible dynoflagellates (sp?) . 10 years after tainting despite everything I endure horribly with IBS, joint paint, bone agony, mind mist, temperament swings, headaches and so on. I do crossfit or yoga ordinary (I’ve generally practiced unless I’m in the intense phase of a headache). I’ve been on a paleo diet throughout the previous 3 years and my IBS is everything except gone however alternate side effects are still very annoying. What else would i be able to do to enhance my prosperity? Much obliged!

  7. Stunning! What an abundance of data! I’m worried about the possibility that that there is such a great amount here that it is difficult to place it into compact clinical setting to help patients. It truly bodes well.

  8. I’m wondering if it’s possible for biotoxin illness to affect TSH w/reflex to FT4 levels. My daughter’s level has been increasing 4.42 mlU/L to 4.78mlU/L over period of 3 months. Free T4 levels within normal range. She is age 3.
    I realize this is very little info but we are waiting for an Endocrinologist appt. at the Children’s Hospital. We’ve also been through 2 EEG’s for her, one a 72 hour and an MRI. Abnormal EEG but no visible tonic/clonic movements although EEG indicates seizure. The thyroid question occurred to me because of the information I’ve read about biotoxin illness affecting the metabolic system. I am so GRATEFUL for Dr. Shoemaker’s book, website and yours, Dr. Kresser. The process of finding a doctor in CT that is familiar with Dr. Shoemaker’s work is extremely difficult. The closest MD certified by Dr. Shoemaker is in North Carolina.
    Here is some background:
    I’ve taken the VCS test online and failed, I did the ERMI (through mycometrics) myself in our house using the kitchen/living room and bedroom downstairs with a total ERMI of 7.58. We have a lot of wet insulation in the crawlspace under our bedroom (I can’t stand to even go in there). This is my husband’s home but he does not believe that it is a dangerous problem. He works in construction and a couple of his co-workers apparently agree with him.
    I am familiar with Functional Medicine and have a fantastic ND with Dr. Kara Fitzgerald. I am trying to seek treatment through a physician who is also an MD because my children are involved and my husband is not supportive. It will be all out-of-pocket and I am a stay at home mother (my son has sensory processing disorder, etc) so our only income is through my husband. I have to make every dollar spent have as much value as possible. Read: If I have to leave my husband because the house is environmentally unsafe (and he doesn’t believe it), I will need to involve the court and I will need a judge that will believe a doctor. This sounds extremist possibly but I have been exposed to carbon monoxide in the workplace before and had the whole “sick building syndrome” talk from a doctor. I know there is a problem in our house. My son is coughing, my husband is coughing, I have a hard time getting air sometimes (out of breath just reading a book to my kids) and a bunch of other symptoms. This fall I ran a 4 mile obstacle course and two 5K’s, don’t smoke, don’t drink and eat gluten and casein free. Reading a book shouldn’t make me out of breath. We live in a very wet area, we can see the lake through the woods and at times you can smell the mold outside.
    I gave my pediatrician information on Dr. Shoemaker and also a detailed letter explaining why I believed it possible there is a biotoxin problem. I don’t know where to turn for my children so I am pursuing finding a doctor to test me and then I will be able to test the kids. I am afraid of my kids getting taken away because a doctor thinks I’m a hypochondriac.
    I’ve been to the allergy and asthma specialist for my son and he told me there was nothing I could do for my son’s post-nasal drip, rashes etc. He did not believe in IGg testing either. Just take the nasonex and albuterol. This was an allergist that my former pediatrician was also a patient of. Dr. Kara Fitzgerald was the one who was able to cure my son of having to take anti-histamines every time it rained. So please forgive me for having so little faith in the MD’s in Connecticut. If you have any advice or direction I truly welcome it. Every day I wait for an appointment is not about the damage my body is incurring but the damage that is possibly being done to my kids.

  9. I have just been diagnosed with CIRS probably due to a mold issue in the condo we rent. We are having testing done. I also have the gene 113 52B which makes me more susceptible. I also have CRPS. Just looking for answers and I don’t even know the questions!

  10. :/ huge learning curve today. Thank you so much, from the bottom of my heart Chris for this podcast. I’ve read / listened and cried pretty much all the way through the 1 hour long talk with Dr Shoemaker. I’ve been so ill for 4.5 years plus and I have really financially gone nearly under. I feel so scared of our future as we have no-one to help us. The one doctor that knows Dr Shoemakers protocols is far too expensive for us. We have started the process of getting the mould identified today and I am as far from the room/wing of the house that has the issue. I have some zeoforce binder to start once the mould is treated and gone. Thanks again for the help.

  11. Chris,

    Just want to send a huge thank you for this podcast episode. When listening I realized that the symptoms described match my wife’s situation exactly. We just got her blood work back and after 10 years of pain and misery we now have the correct diagnosis – CIRS. This is huge, words can’t express our gratitude. At least we know what we are dealing with and why conventional methods have not worked.

    Regards,

    Peter

  12. This is what I have received from the “mold” doctor:
    Fees for non-patient education:
    15min/$275
    30min/$575
    45min/$675
    60min/$875.
    The consultation is for education purposes only. You will not become a patient,nor you will receive a treatment plan or prescriptions. You may receive suggestions to discuss with your doctor.
    F…g Mafia in white coats.

  13. @Admin

    So staggeringly useful! Much obliged to you!! Helps me better comprehend the different labs my specialist has been requesting! It would be ideal if you bring Dr Shoemaker back for the majority of the subsequent inquiries you said!!

    regards
    rakhi

  14. My journey with CIRS began 6 1/2 years ago and it has absolutely turned my life upside down. I have been forced out of my home and I’ve lost all of my belongings. I was exposed to indoor toxic mold after moving into the Wamsutta Lofts in New Bedford, MA. Unbeknownst to me, I have a genetic predisposition to mold sensitivity (According to Dr. Ritchie Shoemaker, who identified and characterized mold illness, about 24% of all people are susceptible to CIRS and mold illness). Being exposed to the hidden mold in my residence caused me to become severely ill and subsequently develop extreme hypersensitivity to even minute amounts of mold. My reaction can be likened to those who suffer from multiple chemical sensitivity (MCS). Suddenly, I could no longer be in or around many buildings, cars, people, and objects without becoming extremely sick. “Mold hits” results in me experiencing shortness of breath, extreme fatigue, muscle weakness, all over body pain, and more. People like me are forced out of their homes and often resort to living in their cars or in tents due to a lack of tolerable housing. While the illness is diagnosed with commonly available blood tests and it is treatable, there is a severe shortage of doctors who are aware of mold illness and the treatment protocols. Patients with CIRS often lose their jobs, health insurance, and housing. Much of the testing and treatment is not covered by insurance leaving people financially devastated. It is only through my faith in God that i have continued to push on, not knowing when or if my health would ever return.

    • I am with you. Pretty much in the same situation. While the interview is very helpful and gives hope, there are no doctors who will test and treat you. I can’t afford $8/min consultation. I have not been working for 3 years now. The 10 doctors that are certified take a limited number of patients if any. And we live in the year 2015 in the richest country in the world with the most advanced medicine. Literally discarded. Billions are spent to help others around the world.

  15. I’d really like to hear more about MARCoNS in relation to implants.

    How does one test to see if biofilms are an issue from something like a tibial nail? Is there any way to treat this without resorting to pulling the implant? I doubt many conventional surgeons are going to be willing to remove long standing implants based only on the evidence so far. Can these people ever get healthy regardless? How?

  16. I’ve read all the comments and wanted to add that I was listening intently to the podcast, my jaw dropping open more and more and then, the coup de gras, the static electricity symptom. As predicted, I thought, “How did you know?” I’ve been in treatment for HPA axis disregulation, various underlying infections and parasites, gluten intolerance, and, of course, gut dysbiosis, but nobody can get to the source of the migraines. Is CIRS only and always about mold? I feel as though I am constantly inflamed to some degree, but much more so when I have a headache. I can’t wait to hear more about this.

    • Laura, did you follow the ancestral health approach by Chris?
      If you’ve been treated for the aforementioned issues with the traditional medicine approach you are hardly likely to find the light at the end of the tunnel…
      Healing your gut requires a careful approach, and gluten free is a bogus if you eat gluten free processed food. It’s not just about gluten, to heal yourself and inflammation you have to heal your gut and to heal your gut you have to avoid toxins, i.e. any cereal grain, focus on most nutrient dense diet, restore the balance of the gut microbiome first eventually addressing SIBO and other issues.
      And then there’s exercise and lifestyle, sleep etc…at last, when you correctly addressed every of these cause, you might see if it could be about mold etc…

      • Thank you for your concern. Indeed I am following an ancestral approach. While many things are resolving, and I am feeling much better, I have never seen a list of symptoms nor of disease progression that matched my own as closely as the very thorough description in this podcast. The agent that triggers the inflammatory response in me is wheat. I know I am on the right track and I am getting better, but I ate wheat for 50 years before I figured out I was intolerant to it. It will take a long time for my system to clear it. I am hopeful that the migraines, like the other symptoms, will resolve in time.

    • I have been listening to 3 different interviews with Dr.Shoemaker. It is indeed a jaw dropping knowledge. But we are in limbo as there is no one to treat us.

  17. Chris, this was definitely a new subject for me. From the comments, I can see that Dr. Shoemaker has his flaws in research and treatment, although he took it on and brought the subject to light which is so important since the problems ARE real! I can see several issues I have that apply to this syndrome that were looked at individually and dismissed by doctors (ya, big surprise!). As someone else said, I hope that you can look at Chronic Inflammatory Response Syndrome from a much more complete Functional Medicine perspective. Do you work with Dr. Raj Patel in Redwood City who is one of his certified practitioners?

  18. Chris, thank you for this information. I’ve been working in a water damaged building for 3 years, and have since had various health issues arise. I know I need to leave, and this interview has made me realize the importance of making that change.

  19. This really helps to connect the pieces. I’m an autistic transgender male living in the Southwest who’s been sick for a long time and I’ve got friends in the same boat. Doctors run us off, tell us we’re crazy. I think it hits us harder because being autistic, we have these recessive genes, and two, being transgender, I’ve always thought that free testosterone could be an immune system trigger, but no one believed me. There are autistic females here who are sick too. Looking forward to more info.

  20. “””We saw the same thing with testosterone. Levels were low and because the enzyme called aromatase is upregulated like crazy, we saw high levels of estradiol, all due to little MSH. And without adequate MSH effects on gonadotropin, you never had normal testosterone pathways, so it was disaster if people took, you know, a little bit of testosterone to try to improve that”””

    How would one know if you had low T because of low MSH? And what would be the result if someone was using exogenous T, where they also had low MSH? Why would that be bad?

  21. “As MSH declines, so too does the level of beta-endorphin made when MSH is made, so we have chronic pain, chronic fatigue, and unexplained weight gain that will never go away”.

    Does this mean that once one’s MSH is low, they’ll never lose the weight, even with proper treatment? Since we don’t have prescription MSH available, this concerns me. Or can production of MSH pick back up once treatment is completed?

  22. So incredibly informative! Thank you!! Helps me better understand the various labs my doctor has been ordering! Please bring Dr Shoemaker back for all of the follow-up questions you mentioned!!

  23. I wish I could have understood what he was talking about. It was like listening to a foreign language. I’m guessing mold is a bad thing.

  24. Whats the best way to test your home for mold issues? I’ve read conflicting info about home mold tests and wether they give any valuable information. Chris, if you read this, how did you find out you had mold in your home? Did you move or do remediation?

  25. I forgot to mention in EDS the only type of MRI Bain Spine should be sitting/upright plus in Vascular type the best one is the MRA to look at Veins…In EDS some have serious flexibility in large and/or small joints, some are actually very stiff, the skin in majority is very elasticity many years ago these illnesses were called ‘Rubber Man Illness,’ there is no doubts whatsoever this is ‘undiagnosed’ Ehlers Danlos Syndrome with in some ‘partial incomplete Marfans Syndrome or non EDS but full Marfans Syndrome a problem with the Aorta…In r
    ‘rare’ types of EDS one can have abnormal Bone Dexa Scan Spine ‘Osteopenia’ also see the EDS UK website it is full of info on EDS types & how to diagnose it properly it is the most missed Medical condition today some patients wait decades for a thorough proper diagnosis when I mention prior Dr. Rodney Grahame is convinced Michael Jackson had EDS no doubts about that it explains also his severe pain he suffered with I always suspected that he also had the illness in fact I have no doubts whatsoever Gulf War Illness is also EDS plus it explains why it is in their g=family members as well…Is Radiation the underlying cause of EDS in suseptible people I do not say no to that I have seen enough Positive samples to say yes it is plausible but yet ‘unproven’ or accepted as Cause…

  26. Hi Chris.

    Very interesting episode! Can you please share what lab you use for testing. My local lab doesn’t do MSH, TGF beta 1, VEGF, and MMP9. Thanks!

  27. Excellent podcast and best interview I’ve heard with Dr. Shoemaker; thanks, Chris! As someone with CIRS / mold biotoxin illness, I followed Dr. Shoemakers entire protocol for several years. He’s a brilliant man! However, his treatments include very strong antibiotics and medications, and cholestyramine is loaded with sucrose, not to mention it lowers cholesterol, which we need to make all hormones. Chris I’m so excited that you are taking on this complex treatment protocol and it’s my hope that you’ll find equally effective healthier alternative treatments that will be more microbiome and health friendly!
    For those interested in learning more about the biotoxin pathway, there is a DVD offered on Dr. Shoemeker’s Surviving Mold website called ‘Biotoxin Illness 101’ by Dr. Neil Nathan, which is excellent and easier to understand.

  28. Chris,

    I’m really shocked that you’d promote Dr. Shoemaker. Shoemaker is a huge promoter of big pharma and prescribes drugs for mold exposure that DON”T WORK.

    His tests are also NOT proof that someone has mold toxicity. Also his research was never complete…he just retired and left holes in his research.

    Many patients have complained that they were never healed from his work as well as they said they found out they were just “lab rats”.

    I wish people would do their research before promoting “gods” of medicine.

    • I think Chris is a sharp guy and took into account this things. I understood that he doesn’t take for granted anything investigating on both the sides. Said that, it seems to me that Dr. Shoemaker (btw I don’t like this name cause I hate shoes :-)) is going to blame mold for any issue, that for me is highly unlikely and it’s more likely to be just about a tiny slice of population…let’s be serious, we have tons of evidence that toxins and unbalance from diet is the major contributor to chronic inflammation rather than molds. It seems to me more a moldbuster witch hunting attitude, but also understandable considering the psychologic side of a work that involved an entire career…

    • Toxic Mold Expert
      I would like to present the other side. I am a patient of Dr Shoemaker as well as a doctor who has learned his protocol. If not for the work of this man my entire family would have succumbed to the damage caused by toxic mold in our home. It is so sad that people like you rake him over the coals. Are you sick? Have you done his entire protocol? My children could not attend school for years by the time we found him. I am so happy to report because of everything he talked about in this interview my children are living life again. The pharmaceuticals he uses in a very careful and skilled way gave my entire family our lives back. I will be eternally grateful to him. In our household he is a genius!

  29. Chris, can we say that some compounds found in grains behave as biotoxins triggering a chronic inflammation? After all gluten itself triggers the overexpression of zonuline opening the tight junctions, and WGA, ATIs and others are thought to provoke leaky gut, together with SIBO or gut disbiosis that might also be provoked by acellurar carbs found in grain flours…I hope this research won’t lead to blame only mold e co. for all the sickness around…I think that it could be one of the many trigger to disease but it can hardly absolve gluten or grains from their responsibility. When leaky gut is triggered, you can develop celiac disease, gluten sensitivity and autoimmune disease, but also other chronic diseases, but the point for me is that there are several factors that lead to leaky gut, and grains are one of the most leaky gut trigger…I sincerely doubt that mold exposure drives a huge percentage of the overall sickness around. Of course we have to keep an open mind and can change opinion is synonimous of an open mind, and gluten itself is not be the only trigger of all the diseases, but on the other hand there’s a lot of evidence to support its responsibility together with the other compounds in grains (especially wheat, see also the excellent article by Trevor Connor) as one of the first causes of leaky gut that lead to most of the diseases of civilization. Thanks Chris for the good points you arise every time with your articles and podcasts.

    • And the other clue about MSH disregulation can come from leptin…Ian Spreadbury found that acellular carbs mostly from grains cause leptin rrsistance…could thr mechanism could be this?: food and toxins that provoke inflammation, cause a low MSH and leptin arise as feedback to produce more MSH leading to leptin resistance…it seems to me that biotoxins from mold and toxins from food are both causes of the issue and are similarly triggers of leaky gut, could it be?

  30. Chris,
    I’d like to recommend a Podcast topic for discussion. Whole Blood Viscosity Test, by Meridian Valley Labs. Mine came back as severe hyperviscosity and wondering your thoughts on tis test.

  31. Great podcast! You mentioned ciguatera in there. I acquired ciguatera by eating grouper here in the Bahamas. Unfortunately our beautiful reefs are severely contaminated by the awful dynoflagellates (sp?) . 10 years after contamination i still suffer horrendously with IBS, joint paint, bone pain, brain fog, mood swings, migraines etc. I do crossfit or yoga everyday (I’ve always exercised unless I’m in the acute stage of a migraine). I’ve been on a paleo diet for the last 3 years and my IBS is all but gone however the other symptoms are still quite bothersome. What else can i do to improve my well being? Thanks!

    • I’d recommend going to survivingmold.com and working with one of the certified physicians. CIRS is a complex and challenging illness to resolve, and extremely difficult to do with a DIY approach. I wish I could say otherwise, but this is the reality.

      • I am a patient of Dr. Scott McMahon, mold certified physician, on survivingmold.com.. I am also Gina Lopez, from Dave Asprey’s documentary “Moldy,” absolutely, the Shoemaker protocal saved my life.

  32. Dear Chris

    Just listened to Dr Shoemaker’s podcast – fascinating!!! All of it was so relevant to what’s going on with me, also recently on top of many other things, I’m getting lots of headrushes and electric shocks touching almost anything metal. I couldn’t really understand what the cause of that aspect was, you and Dr Shoemaker mentioned something about electrolytes – can you expand?

    Many thanks
    Suzi

  33. Muchas gracias! I am headed to an FM Dr. on Monday and I feel sooo much better equipped to get my $’s worth knowing what to ask, what symptoms are important and what tests are helpful. I take notes on every pod cast you send and it is all really sinking in and making sense. I am looking forward to not needing 10-12 hrs of sleep/night so I can be a better mom!
    Jana in Minneapolis

  34. ‘undiagnosed’ Ehlers Danlos Syndrome types has nothing to do with these so called infections he speaks about…He speaks of numerous things he is all over the place…Erik Johnson has been going on since the 80’s on Mold total Comedy if any above were any causes the CDC or NIH would be on top of this & they are not…More theories unproven Science…These must be the 100 Causes I have thus far heard about yet none ever pan out I wonder how many of his patients he has tested to rule out EDS type(s)…I still feel aside from EDS diagnosis Radiation does play an underlying role its not Mold Comedy lies ‘theories’ he was asked years ago by NIH to prove his ‘theories’ which he has not…

  35. Wondering if CRPS is related to CIRS, VIP. It is definitely an inflammatory issue effecting the pain neurotransmitters. For years I have had internal shocks and zings, sometimes strong enough for me to jerk involuntarily. I have been doing the anti-inflammatory diet for 5 yrs and still have difficulty with my digestion and acid re flux and weight. My GP is a waste of time, and I need some help any recommendations of Physicians here in the Milwaukee, WI area?

    • There is a large body of evidence supporting every aspect of the CIRS hypothesis and treatment protocol, much of it organized and listed on the survivingmold.com website.

      • Hello

        I searched for the Hiv theme here but I couldn’t find

        Can I ask?
        Do you have or know any study that helps people with Hiv and taking the medicines and to avoid lipodistrofy? Also to avoid lipidics disorder as well as sugar disorder in the blood

        And please do you have a personal opinion?

        Thanks for the attention

      • Chris,

        I’m disappointed in you. You typically demand higher standards of research and thus often have Pubmed citations to back up your writing.

        Most of what Shoemaker discusses is pure speculation (or hypothesis as you admit), which of course is listed on his website, because it’s never been accepted for peer-review publication.

        Take his claim that 24% of the population has this dreaded HLA toxic mold gene. As someone pointed out over on the Phoenix Rising (ME/CFS) forums, “28.6% of Caucasians have a “most-dreaded” (Lyme + Mold susceptible) HLA type, 47.5% of Caucasians have a “mold susceptible” type, and 44.5% of Caucasians have a “Lyme susceptible” type”. And if you add together the prevalence rates of all of the unique “susceptibilities” listed on Shoemaker’s site, it comes out to 86.8% of Europeans being afflicted.”

        Here’s a link to that discussion if you’re interested:

        http://forums.phoenixrising.me/index.php?threads/interpreting-hla-dr-test-results.37877/

        Meanwhile, it’s worth noting that even though you got sick, you did recover completely. You’re to be commended for that.

        On the other hand, many of Shoemaker’s patients remain ill for decades, like his most famous patient, Erik Johnson. I just wonder if that’s because, unlike yourself, they were told (by Johnson and Shoemaker) that they must get rid of ALL their belongings, and do ‘extreme avoidance’ in a tent in the desert. Often they end up sicker than before and develop severe MCS.

        I would caution anyone to look at all the options before considering Shoemaker’s extreme advice.

        • Indeed that’s the thing that makes me think about the reliability of the hypothesis. If it was a thing for a tiny percentage of the population it would be much more resoneable, but let’s be serious, this is not the main evil of civilization!

        • Kelly,

          Shoemaker has been diligently publishing peer reviewed scientific papers for almost twenty years about CIRS and its precursor Sick Building Syndrome e.g.

          Ryan, J, Wu Q, Shoemaker, R. (2015). Transcriptomic signatures in whole blood of patients who acquire a chronic inflammatory response syndrome (CIRS) following an exposure to the marine toxin ciguatoxin. BMC Med Genomics; 2015, 8:15. PMID: 25889530. doi: 10.1186/s12920-015-0089-x

          Shoemaker, R, Giclas, P, Crowder, C, House, D & Glovsky, M. (2008). Complement split products C3a and C4a are early markers of acute lyme disease in tick bite patients in the United States. International archives of of allergy and immunology; 146(3):255-61. PMID: 18270493. doi: 10.1159/000116362

          Shoemaker, R, House D & Ryan J. (2014). Structural brain abnormalities in patients with inflammatory illness acquired following exposure to water-damaged buildings: A volumetric MRI study using NeuroQuant. Neurotoxicology and Teratology; 45: 18-26. PMID: 24946038. doi: 10.1016/j.ntt.2014.06.004

          Shoemaker R, House D & Ryan J. (2013). Vasoactive intestinal polypeptide (VIP) corrects chronic inflammatory response syndrome (CIRS) acquired following exposure to water-damaged buildings. Health; 2013: 3: 396-401.

          Shoemaker, R, Hudall, H, House, D, Van Kempen, A & Pakes, G. (2006). Atovaquone plus cholestyramine in patients coinfected with Babesia microti and Borrelia burgdorferi refractory to other treatment. Advances in therapy; 23(1):1-11. PMID: 16644602

          Shoemaker, R & House, D. (2006). Sick building syndrome (SBS) and exposure to water-damaged buildings: time series study, clinical trial and mechanisms. Neurotoxicology and teratology; 28(5):573-88. PMID: 17010568

          Shoemaker, R & House, D. (2004). A time-series study of sick building syndrome: chronic, biotoxin-associated illness from exposure to water-damaged buildings. Neurotoxicology and Teratology; 27(1):29-46. PMID: 15681119.

          As for Erik Johnson, he regularly climbs mountains such as the 14,505 foot Mt. Whitney. He is well and truly recovered. Read the book Back from the Edge by Lisa Petrison.

          As for Phoenix Rising, I don’t think threads on that forum are peer reviewed, are they?

          • Hey thanks for those Caleb.

            My bad. I was aware of the two earlier studies, but not of the most recent ones (2013-2015).

            Of course Phoenix Rising isn’t peer-reviewed, but unless it wasn’t posted, I’m not aware that Shoemaker’s “dreaded” mold/HLA hypothesis has been peer reviewed either. Even if 24% of the population has this gene, where are the 75-90 million people suffering from the severe symptoms of SBS? It doesn’t seem to add up.

            I’m aware that Erik is functioning well, but as he so graciously admits below, he still has to ‘evade’ exposures, or he’ll become very ill.

            I read a comment of his on a youtube video as well. Let me see if I can find it.

            Here it is: “I have never been able to free myself from the necessity to avoid mold.”

            From this link:

            https://www.youtube.com/watch?v=-JgirrE3Zc4

            So I’m not sure that even Erik would call himself ‘truly recovered’, although he is able to function very well probably the vast majority of the time.

            It makes me wonder if there’s something that he hasn’t treated that’s bringing his immune system down, so that he wouldn’t have to worry about “the ick”, which I think is both indoor and outdoor molds. That’s just a hypothesis of mine though!

        • Actually, the “Godforsaken Desert” sabbatical was just a suggestion on how to “get clear” of mold, so one can unmask. To gain a sense of what it is like.

          So as to make better decisions on how much of this substance one chooses to endure.
          “Extreme Avoidance” is a strategy of using my sensitivity to perceive sourcepoints in town, the better to evade them.

          I have been telling people for the last fifteen years that I live in the middle of Reno, Nevada.
          This never seems to slow them down on thinking that I am huddled out in the middle of the desert in a tattered tent, with only rattlesnakes and scorpions for company.

          • Hey Erik,

            Thanks for your comment. Do you have a theory for why you still need to avoid molds? I ‘m wondering if you did some other treatments, like Lisa has, if you would be able to tolerate them better?

            Also do you know why the majority of people who do ‘extreme’ style avoidance develop MCS, sometimes very severe, after going to the desert or to a ‘clean’ area? I’ve never been able to understand that.

            • Hi Kelly.
              I haven’t seen a majority of people who make a concerted effort to avoid mold (Extreme Avoidance) go on to develop severe MCS.
              Quite the opposite.

              I think a few vocal individuals who were going to be MCS no matter what have biased the perceptions of others.

              I believe that my tolerance currently exceeds that of nearly everyone I’ve seen who has done all kinds of detox regimens.

              I decided that since I’ve been doing this so long, I may as well keep it up, and serve as a possible example of what might be accomplished by purely natural means.

              I’m not sure why this hyper reactivity is happening, but I was raised by parents who believe that the body probably has a good reason for what it is doing, and the less interference by therapeutic interventions, the better off I am likely to be.

                • Kelly
                  I just want to present another picture here other than Erik’s success story. Erik, as he mentioned, chose avoidance years ago and it has worked for him. To the best of my knowledge, he did not complete Dr Shoemaker’s protocol. But I have, as well as my 14 year old daughter and my 13 year old daughter as well as my husband. Before finding Dr Shoemaker’s work, we were diagnosed with lyme disease and were losing the battle. Once we found the HLA-mold connection and began treatment with a doctor who has learned the Shoemaker protocol…we finally started to get well. My children were housebound and unable to attend school . Both were on 504 plans and had to be tutored by the school district in our home. Just one year after starting Dr Shoemaker’s treatment, they are both back in high school full time..everyday with no absences. My youngest just made the tennis team and my oldest who was unable to even climb a flight of stairs for the past 4 years is able to go to school all day and participate in extracurricular activities. Dr Shoemaker’s work has literally saved my entire family but most especially myself and my daughter. I would have never entrusted my gravely ill children to just any doctor. His peer-reviewed paper on VIP, vasoactive intestinal peptide, which was published in the medical publication Health 2013 is what made me seek out a doctor skilled in his treatment. Ironically, it was VIP that literally turned my daughters severe chronic fatigue around. We were losing her and because of this man’s life work I have my daughter back. I just wanted to present another side. People need to know there are many people who have been helped by Dr Shoemaker’s treatments. It is nice to see those written about sometimes and not just all the negative stories that are not always true.

                • That’s great to hear Patricia! Really, I’m sure you and your entire family must feel a huge sense of relief and appreciation to have your health back so quickly.

                  If you don’t mind me asking, were you able to stay in your home and keep your belongings, or did you have to start from scratch?

                  I’m not against Shoemaker, I just have some questions about his ‘dreaded gene’ hypothesis and the need for ‘extreme’ avoidance.

        • I AM A TOXIC MOLD SURVIVOR.. I am under the care of a mold certified physician, first under the Shoemaker protocal. I am known as a survivor, in Dave Asprey’s documentary “Moldy. ” i am living breathing proof that the Shoemaker protocal does infact work.
          Maybe you need your proof, by putting yourself in a moldy house for a year, see how you feel, and test your argumentative therories and nrgative words about Shoemaker and my dear friend Erik.. Kelly, do us moldies a big favor and PLEASE BREATH DEEEEPLY…
          Sincerely,
          Gona Lopez

          • Hi Gina,

            I’m not sure why you’re so mad. And how do you know I’m not a moldie or living in a house with mold?

            I’m glad that you’re a SURVIVOR — that is great. I’m just asking questions about if it’s necessary or beneficial to get rid of all belongings in order to recover from toxic mold exposure.

            Maybe some people do need to, but please consider the possibility that maybe not everyone needs to or we would have heard about tens of thousands who became and stayed violently ill after the flooding caused by Hurricane Katrina, just as one example.

            Breathing deeply is a good thing, thank you. My best wishes to you in the future!

    • Hi Anita,

      Interesting that you brought up CRPS (for others who might read this and are not familiar, it’s Chronic Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy). I just found out in the last few months that some believe it is autoimmune. It would be great to find out more about the cause. Generally we just get told “It’s a rare neurological disorder that usually develops after an injury.” and that there isn’t any cure, and no one really know why it happens. Not very helpful.

      I noticed that you only mentioned shocks and zings. Do you not have the traditional intense burning pain?

      • Dee, Yes I have the burning pain. I had surgery on my thumb 1/23/15 after that surgery I was diagnosed by my surgeon as having CRPS 2. I have all the tradition symptoms, swelling, sweating, mottled purplish blotches, and worse is the stiffening of my fingers since I am a quilter and knitter. I am currently taking R Lipoic Acid, Terry’s Naturally Curcamin Extra Strength and Fibrenza to control the pain and inflammation. II am also using a lido-cane patch at night. If I use them all regularly I do okay, but the hand will turn to stone if I don’t exercise it daily (which is painful), but I press on. I feel like I am not making any progress in reducing the pain or increasing the flexibility of my hand. Probably more information than you wanted. But, my GP diagnosed me with CRPS 5 yrs. ago when I had a frozen shoulder after a fall and started getting electric shocks all over my body, but she neglected to tell me this. If she had… I wouldn’t have had this past surgery as it is not reccommended, now ???? Well the future looks uncertain.

        • Hi Anita,

          So sorry to hear what you’re going through. Especially interfering with the quilting and knitting! I knit and crochet and and it helps keep me sane and happy. 🙂 Not too much information at all. It’s good to hear from someone else who has it.

          Mine developed in my foot and spread to my leg after an injury. It didn’t get diagnosed for a quite a while, the doctors just thought the wound was infected. A lot of the symptoms are so weird and hard to understand at first.

          I’ve been blessed to have improved a whole lot, my foot looks pretty normal most of the time and I do ok if I am careful. I developed a pinched nerve in the same foot, so if I overdo things, it sets of the RSD symptoms.

          I was really interested in what you’re taking for it. I have taken curcumin before for other pain issues. I can’t take regular anti-inflammatories or pain medication. And they didn’t do anything for the RSD when I was taking them. And I chickened out of the lidocaine patches, I react to a lot of medications, and adhesive tends to give me a rash, which I did not want on the RSD foot! I also tried cortisone injection once to help the pinched nerve, but that backfired.

          That is so frustrating that your GP didn’t tell you your diagnosis. I am very wary of any type of surgery or injection now. At least understand what I have now, and some of the big things to avoid doing.

          I hope you start to improve soon. It took me a long time to get better, but there is hope!

          • Hi Dee,

            I just read your note to Anita on my feed. Forgive my reply but I noticed your reference to Curcumin. I recently had sciatica in my right leg that kept me up for several nights. It took me by surprise, and my go to at first was Ibuprophen. It was helpful for a couple of nights but then I had a strange side effect that I don’t remember. It did prompt me to finally think it through, and I remembered Curcumin. I took 3 capsules that night and it helped better than the Ibuprophen did! It makes since because it really brings down the inflammation which pressed on the nerve. No inflammation, no nerve pain-simple! I also marched right into my chiropractor who corrected the alignment issue that was the reason a bit of exercise would affect my sciatic nerve. Anyway, Curcumin in the right form and dosage is very powerful bio-medicine. I know there are many other naturopathic and homeopathic pain relievers as well. A skilled functional medicine practitioner can help you find the right ones for you. Prayers for your healing and God’s richest blessings!

            • Thank you Carolyn, I appreciate you taking the time to share your experience, and prayers are really the best medicine!

              I liked curcumin, it helped with some other pain issues I had. I’m not taking it now because I’m waiting to hear back about the oxalate content of the one I used (Curamin). I’ve been dealing with kidney stones, so I have to pay attention to how much oxalate I’m taking in.

              I’ve been seeing a functional medicine doctor. She has run lots of tests and helped to figure out some of my other health issues. She doesn’t seem to have anything specific to say about RSD.

              I’ve been going to the chiropractor, too. It helps a lot with back and neck pain, but there hasn’t been any difference in the RSD.

              I’m always hopeful for more improvement, but mostly I just try to be grateful it’s under such good control now. I’m doing great for someone who has this condition.

              • I’m sorry you struggle with kidney stones. I had chronic UTI infections for 20 years while the doctors ruined my body with 3-4 courses of anti-biotics every year. Needless to say, kidney stones were just one needlessly nasty result (Another was knee surgery because of Cipro). I also struggle with blood clots and was told about Collinsonia Root. It is especially helpful when traveling. Well, it also helps prevent kidney stones of all things! Strong B vitamin complex and Magnesium are important too of course. I saw the problem with curcumin and oxalates. I am sensitive too, but have not noticed a problem. Maybe it is because of the collinsonia root. I like the ones by Standard Process and combine it with Cyruta Plus which really helps strengthen the veins. My edema is really under control now too. Perhaps more for your arsenal if you didn’t know about it.

                • Hi Carolyn,

                  Thanks so much for all the info.

                  You might be interested in the Trying Low Oxalates group on Yahoo. A researcher started the group, there is tons of information available there, and an extensive up to date list of foods and supplements. Although turmeric itself is very high oxalate, there are two brands of curcumin (which is an extract) that tested low. I just sent some Curamin to the lab that’s currently doing testing.

                  I had good results cutting the oxalate in my diet, I passed at least 4 stones, and the last two were pretty big.

                  There was a study done showing that 500 mg of l-methionine 3 times per day and 50 ml of cranberry juice 2 times per day can be just as effective as antibiotics for UTIs. I prefer anything that lets me avoid antibiotics!

                  That’s awful that Cipro damaged your knee. One of the doctors I saw when I had trouble with my foot tried to give me Cipro, but after reading the side effects, I asked for something different.

                  I’ve been taking magnesium and B vitamins for quite a while.

                  Thanks so much for telling me about the collinsonia root, I’d never heard of it.

            • Hey Carolyn

              I, too, have CRPS and I, too, have found better results with Curcumin / Tumeric than I have with aspirin or pharmaceutical anti-inflamatories. I’m still experimenting with dosage, but apparently getting the full-spectrum tumeric makes a huge difference over just taking the regular curcumin….if you research the difference you’ll see what I mean.

              What readers may find of interest as well is that apparently the Michael J Fox Foundation is currently dedicating a huge chunk of money to studying Curcumin for Parkinson’s.

              If anyone is interested in non-drug treatment alternatives for pain or neurological dysfunction they can visit a web site called Pain Maps:

              http://www.painmaps.com/

              ….dedicated to brain (and nervous system) plasticity research. It is packed full of videos, articles, research, book lists, along with an audio interview series on the neuroscience of pain.

              There are also two sections looking to explore the link between autoimmune disorders, pain and bacteria infections / the gut, an area begging for research. Would love to hear from anyone about suggested research / reading on this subject, I can post it for the benefit of others.

              • Interesting about “full spectrum Tumeric” I thought that Curcumin was the go-to all this time. What brand do you like? The article about the bacteria creating back pain makes lots of sense, at least from a logic point of view. Currently I am using large doses of Oil of Oregano, Grapefruitseed extract, Standardised Allison and Olive Leaf Extract to try and prevent some trapped fluid in my ears from getting infected while I try to get rid of it with chiropractic adjustments. I have noticed some awesome side effects of other low grade infection healing and of pain relief too! Of course, that is anecdotal, but noted it because it is happening right now. Hope they get some double blind studies regarding back pain and bacteria. It is a worthy road to go down in my opinion!

                • Hi Carolyn

                  I’ve never heard of chiropractic adjustments for reducing fluid in the ears — is that working for you? In any case, yes — oregano is great, but as someone who is always battling infections, I have found *dramatic* results through a specific oregano product called North America Herbs & Spice OregaResp — something about how they formulate the oregano, and it’s got curcumin in it as well. You might try it.

                  As for the brand of Tumeric full spectrum I use, it’s called Organic Traditions — comes in a jar….but I’m sure there are other good quality ones out there.

                  One last tip. I am seriously immune compromised so am always on the look out for potent immune system boosters….one I have found excellent results with is with a company called Food Science, in the States, they make a mushroom blend, but the one that has super strong effect is the one they combine with DMG. Comes in a tincture, and helps brain function too. Highly recommended.

                • Yes, chiropractic does actually help my ear tubes with regard to it being a mechanical problem. Most chiropractors do these kinds of adjustments. Of course it doesn’t always work but it seems to be helping slowly with me. Getting the fluid to drain is really important because the longer it sits there the greater the chance it will get infected. I found the first supplement on Amazon “OregaResp”. It looks good, I think I’ll try it. The others I’ll wait because I need to watch my $ and I have others on hand. Thanks for the tips!

                • My pleasure — and I’m in the same boat financially. From what you describe, though, it may be much more cost efficient to pursue cranial sacral therapy rather than chiropractic adjustments. I know what you are talking about now, and CST is much more fine tuned, works with all the tiny cranial bones to get fluids working properly. More expensive than chiropractor but if you get much better results you may only need a couple of treatments rather than something regular. Good luck….

          • Dee, on the lido-Caine patches, I too react to adhesives, but bless the Lord I’ve been able to use them with no trouble. Honestly it was an answered prayer. Take care.

    • My sentiments exactly. An ND referred me to Dr. Shoemaker’s work and the research looks very promising, but as a fellow CRPS sufferer whose chronic inflammation has taken over my life, I can’t help wondering about the link between it and CIRS. Unfortunately Chris doesn’t really answer your question here.

      If anyone knows about any research linking these two disorders I’d love to hear from you. And anyone with CRPS can visit my site, Pain Maps, dedicated to interdisciplinary research, and neuroplastic approaches to pain and neurological dysfunction:

      http://www.painmaps.com/

  36. Wow, what an incredible read. Thank you so much Chris for all you do. I get so much hope from your blog. Being told I have a serious mold allergy and to “avoid it” never came close to explaining what has happened to my health. I appreciate the science, even if most of it is over my head!

  37. One of the best podcast episodes I’ve heard on this, thanks Chris! Looking forward to parts II and III. Keep up the great work in helping us be better clinicians!

  38. Wow, for a while I would constantly be getting static shocks at the office, but also outside. For some reason I figured it was because of my insulating (rubber) shoes. But this hasn’t happened lately, so I’m happy about that. I’m very curious about some of the treatments!

  39. This is really interesting. A lot of the details are over my head, but I’m going to finish reading it.

    I really appreciate hearing how Dr. Shoemaker got started investigating this, just trying to help his patients as a rural doctor.

    Am I understanding correctly that Dr. Shoemaker believes any type of evaporative cooler will cause illness? I live in the desert, and my home has an evaporative cooler which sits outside on concrete (not on the roof), and has its own duct work. There is also a regular a/c system.

    Thanks.

  40. Wow! What a wealth of information! I’m afraid that there is so much here that it is hard to put it into concise clinical context to help patients. It really makes a lot of sense.

    • Yes, CIRS is a massive topic and we’ve only just scratched the surface. The good news is that I’m going to be writing and speaking a lot more about this in the months to come. Stay tuned.

      • I agree with the above comment- amazing information but overwhelming, too! I look forward to more podcasts. Thanks so much for all that you do!

      • What is the point if there are no doctors who will treat you? With all due respect for the information (there are others who interviewed Dr.Shoemaker)
        you will just regurgitate this information in your own work for your own benefits.
        The history is full of true healers such as nurse Rene M. Caisse and many others.
        What is point of your education and research if there is no practical application? Too many researches who don’t give a s…t about living, breathing and suffering human beings. Even lawyers, as crooked as they are do pro-bono work. How many patients you treat at no -charge?

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