February 15, 2022
Facebook Live: Chronic Fatigue and Alzheimer’s The Surprising Connection
Apollo Health’s Chief Science Officer, Dr. Dale Bredesen, and Chief Health Liaison Julie Gregory were joined in this Facebook Live by Erik Johnson, patient zero in a mysterious flu-like illness that broke out in the Lake Tahoe area prompting investigations that determined that this illness was connected with Epstein Barr Virus (EBV) and mycotoxins. They discussed how this illness affected 160 people in the area that caused extreme fatigue, chills, and brain fog. As a result of his illness, Erik became an advocate for biotoxin research, as his illness was later found to be related to mycotoxin exposure, which increases one’s risk for cognitive decline.
We’ve included a complete recording of the session and a full transcript below for your convenience.
Dr. Dale Bredesen (00:02): Hi, everybody and welcome to Facebook Live. Today. we’re really fortunate. We have one of these Sherlock Holmes stories in medicine, just so important for us to understand disease in a larger way, in a more mechanistic way. We have Erik Johnson with us here. Eric. Welcome. Thank you so much for joining us.
Erik Johnson (00:19): Great. Thank you. Glad to be here.
Dr. Dale Bredesen (00:21): Great. And then I’ll also of course, Julie Gregory, thank you for joining us, Julie.
Julie Gregory (00:25): Hello.
Dr. Dale Bredesen (00:25): And I think this is a great combination because Erik has a truly remarkable story to tell, and really as Patient One of the Incline Village story, which he’ll talk to you about in a moment and with Julie, who’s now going through some of the things very much related to the Incline Village story. And let me just give a little bit of background.
Dr. Dale Bredesen (00:46): Of course, when you’re looking at what actually drives cognitive decline, one of the interesting points has been, there is no formal recognition that mold or mycotoxins have anything to do with Alzheimer’s disease, with cognitive decline. Of course, Dr. Shoemaker said that that brain fog is a common association, but no one has ever said, “Hey, this is associated.” Even though we looked at this a number of years ago and find very clearly that there are people who have mycotoxin associated cognitive decline, that is typically diagnosed as Alzheimer’s disease.
Dr. Dale Bredesen (01:21): So I think it’s important for us to understand, and especially with what’s happening with long COVID and so many other issues with brain fog that are ongoing other chronic viral infections, like Epstein-Barr that’s just been in the news recently because of MS.
Dr. Dale Bredesen (01:36): So really a fantastic opportunity to have Erik here today. And Erik, could you tell us a little bit about the background of what happened with Incline Village? This is way back as you pointed out in November of 1984, tell us the story and tell us how you got involved with this?
Erik Johnson (01:54): Well, a mystery flu-like illness ravaged North Lake Tahoe, and I happened to live directly across the street from a small-town country doctor, who it turned out to be quite famous later, Dr. Paul Chaney. And as a result of being right across the street, I was the first one in the door. And since he couldn’t figure out my illness, he took an interest in my case. And this led into me eventually being asked to serve as the first prototype for this new syndrome.
Dr. Dale Bredesen (02:26): And so, you talked about this new illness. Tell us what were your symptoms? When you first presented what did you note?
Erik Johnson (02:37): Devastating drop-dead exhaustion, brain fog, blinding headaches, a complete body weakness that seemed neurological. It was more than just being physically tired from muscles being worn out. It was as if the nerves weren’t responding to neural commands.
Dr. Dale Bredesen (03:00): Very, very interesting. And did you have any sort of fevers, sweats, things like that or not?
Erik Johnson (03:07): Yeah. The flu-like illness did start out with a high fever and definitely night sweats, killer sore throat. And it was very consistent, I’m told, with Coxsackie B.
Dr. Dale Bredesen (03:22): Yeah. Interesting. And I know when my wife and I both got Delta, despite the vaccinations, et cetera, the striking thing was that just what you described this complete loss of energy. And so, you’ve obviously spent many, many years now studying this, understanding what actually happened to you and so many others. And how many others were affected then with this Incline Village Syndrome?
Erik Johnson (03:51): Well, actually there were thousands in the newspapers. The famous newspapers said, “160 victims at Lake Tahoe. Mystery illness strikes Incline Village.”
Dr. Dale Bredesen (04:04): Yeah.
Erik Johnson (04:04): And that 160 represents only those patients who wound up in Dr. Cheney and Dr. Peterson’s office. And who were brave enough to go to the quack doctors while all the other doctors were dismissing the disease. Many simply moved away.
Dr. Dale Bredesen (04:20): Isn’t that amazing? Where have we heard the story before, doctors dismissing the problem? So, this is, as we talk about medicine is about tradition and permission, not about disruption. And so, here’s something completely new and ultimately obviously better and better understood. And so if you could talk a little bit about where were the centers discovered? Where did this seem to be coming from?
Erik Johnson (04:45): It seemed to be centered directly in the heart of Incline Village. There was another cluster about 12 miles away in Truckee that came out of the school system. The first people to really report having a flu-like illness from which they couldn’t recover was a cluster of teachers at Truckee High School. And when they heard that Dr. Cheney and Dr. Peterson were seeing sporadic cases of what appeared to be a similar illness, they made the drive over the mountains to see the two doctors, the only two in the area who had listened, as all the doctors in Truckee completely dismissed it and said is just a normal flu, it’ll probably go away.
Dr. Dale Bredesen (05:25): Yeah. Interesting. And was anyone measuring toxins in the urine at that time?
Erik Johnson (05:33): No. In fact, toxic mold had not yet been discovered in 1985.
Dr. Dale Bredesen (05:38): Yeah.
Erik Johnson (05:38): The first peer reviewed literature on the dreaded toxic black mold, Stachybotrys, didn’t appear … Wasn’t at the human health literature until the following year in 1986, too late for this to be incorporated into the investigation.
Dr. Dale Bredesen (05:53): Interesting. And what were the initial conclusions from, from Dr. Cheney in terms of what was actually driving this illness?
Erik Johnson (06:02): Well, they were viewing this through the filter of their testing methods, which were limited at the time. In the first part of 1980, all they had available were Monospot tests and CAT scans.
Dr. Dale Bredesen (06:20): Yeah.
Erik Johnson (06:21): And standard blood panels. And that’s pretty much it. And as by a fluke of amazing timing in the middle of the outbreak, in the middle of 1985, a new MRI machine was installed down in Reno. And immediately people show showed up where nothing was seen on the CAT scan. People showed up on MRI with brain lesions and visible deformations in the cerebral matter. And a new test was deployed. The Nichols Lab unveiled a new Epstein-Barr virus serology test.
Dr. Dale Bredesen (07:02): Okay.
Erik Johnson (07:02): Which measured viral capsid antigen, early antigen, Epstein-Barr virus, nuclear antigen. It was much more sophisticated than simply telling you if you had EBV or not. This would actually show you titers, the fluctuating state of your immune system, and this reversed the results of the earlier Monospot and confirmed that these people were having problems with reactivated EBV.
Dr. Dale Bredesen (07:30): Interesting. And of course, as we’re all learning, these diseases are often not mono ideological. It’s not just one thing that contributes to these various syndromes. You told a wonderful story before about the discovery of a specific area in a school that seemed to be one of the critical sources for this. And could you tell us a little bit about how this was discovered and what turned out to be found at this, obviously, which was one of the main centers for where this was emanating from?
Erik Johnson (08:01): Yeah. The teachers’ lounge at Truckee High School was right up at the front of the school and it was where about a third of the faculty took their breaks. And when news appeared of this strange mystery illness, a flu from which people do not recover, and all the local doctors, including the hospital, dismissed the teacher’s complaints. They heard about Cheney and Peterson seeing the same thing at Incline Village. And they had the new EBV serology test found, and they all showed up with a faltering immune system and this drew attention to the fact that there was one cluster of teachers with this mystery illness, while the rest of the school seemed immune.
Erik Johnson (08:54): The Dean’s office across the hall, they weren’t affected the library next door, they weren’t affected. It was all concentrated in one teacher’s lounge. And this struck Dr. Cheney as so odd that he called the CDC and said, “As far as we know, EBV is an isolated disease, due to its long incubation period.” Over a month, you can, can’t really have an outbreak, especially in adult teachers. And this is the impetus for his call to the CDC and serves as the core reason for the CDC interest in why EBD was acting strangely and resulted in sending two epidemiologists to find out what was going on.
Dr. Dale Bredesen (09:36): Interesting. And tell us a little bit more about what was the discovery in terms of things beyond EBV that seemed to be contributing to this syndrome?
Erik Johnson (09:49): Well, Dr. Cheney was instantly aware that this couldn’t be EBV by itself.
Dr. Dale Bredesen (09:55): Yeah.
Erik Johnson (09:56): But in order to engage to the CDCs interest, he had to report the facts as interpreted by his testing. And the CDC was observing an outbreak, or not an outbreak, but sporadic cases of adult mononucleosis all across the country. It was all over the place for some reason, in 1985, this EBV disease was going everywhere, but it wasn’t in clusters. It wasn’t contagious. And Dr. Cheney’s report was the first warning that EBV might have mutated and it might have assumed a new aspect. And Dr. Gary Holmes said, “If EBV has altered its form, mutated into a contagious virus, this would rewrite the books on EBV.” And that was their interest in coming out. But Dr. Cheney always suspected that there was another flu-like illness, like an activator virus that went along as a co-factor to cause this reactivated state of Epstein-Barr Virus.
Dr. Dale Bredesen (10:59): Interesting. Interesting. And then how did he go about establishing that?
Erik Johnson (11:05): Well, the continued application of this test, the failure of the EBV to resolve confirmed that it was indeed a chronic state of EBV activation, which is known to result in a various cancer like Burkitt’s lymphoma and non-Hodgkin lymphoma.
Erik Johnson (11:27): And the CDC at the time said that chronic active EBV has a 50% mortality rate from eventual cancer. So, this really did catch their interest. And Dr. Gary Holmes came out, he examined the serologies, and was satisfied that this did fit the parameters for the EBV syndrome, but the wildfire contagion, the ability of this to travel from person to person, in flu like illness and create clusters remained unexplained.
Dr. Dale Bredesen (12:06): Right.
Erik Johnson (12:07): And for that reason, he wrote up a paper called, The Tahoe Study, which was based on that outbreak at Truckee High School. The teachers in that room saying, “Yes, we are seeing a chronic state of EBV reactivation. Is EBV the cause?” Apparently not. This needs further research. This was presented to the Holmes committee, a convention in 1987, which was a meeting of various people observing this mystery illness across the country. And they determined that they should go ahead and create a new syndrome but leave it open and vague and just say further research is needed.
Dr. Dale Bredesen (12:47): Exactly. Okay. And at what point did people begin to talk about the possibility that mold, and mold related toxins were actually involved with this?
Erik Johnson (12:59): Immediately. In fact, the teachers were trying to engage Dr. Cheney and Dr. Peterson in the search for an environmental cause, asked them to look into the room, but their descriptions of mold being in the room, as far as they were concerned at the time, mold was nothing more than an allergy.
Dr. Dale Bredesen (13:20): Right.
Erik Johnson (13:21): And everybody, they asked dismissed mold as being just an allergy, so for that reason, there was no point in looking any further.
Dr. Dale Bredesen (13:29): Yeah.
Erik Johnson (13:30): And these teachers were so concerned about this, that when Dr. Gary Holmes was down at the lab, searching over the medical records for signs of reactivate EBV, they managed to get a hold of him. They ambushed him literally and said, “There’s something in the filters. If you examine that room, you’ll find the agent in the filters.”
Dr. Dale Bredesen (13:53): Hmm.
Erik Johnson (13:55): And Dr. Gary Holmes looked at them, as Gerald Kennedy said later, “Like we were a couple of lunatics.”
Dr. Dale Bredesen (14:01): Yeah.
Erik Johnson (14:04): So, the search for an environmental agent, and specifically into mold, was requested right from the beginning.
Dr. Dale Bredesen (14:11): Interesting. Interesting. But it sounds as if it’s never really been officially sanctioned?
Erik Johnson (14:19): No. There were repeated requests, not only from the Truckee teachers, but from the other clusters as well, North Tahoe High School, the Hyatt Casino, everybody asked. And I went to a meeting of the support group and the cluster at the Hyatt, it was all the employees. There were no guests that got sick. It was obviously people who had a prolonged exposure in that building. And I asked them, “Well, do you have a mold story? Have you been having a problem with mold there?” Which I already knew about, because I had worked there, and I’d had a previous bout of some symptoms as a result of that being a sick building. And they confirmed to me that yes, everybody knows about the mold, but if anybody talks about it, they’ll be fired.
Dr. Dale Bredesen (15:09): Yeah. This is obviously something where even selling houses and things like this, it’s hush, hush, because you don’t want the next group to sue you for selling them a moldy house. It’s tough. Everyone’s kind of stayed away from this. What was it as yourself, a citizen scientist, who spent so much time looking into this, evaluating it, and even looking at ways to improve things, what was it that convinced you that there is an important player here in Stachybotrys and its associated toxins?
Erik Johnson (15:41): Well, I had had previous encounters with mold and even to the point where I had narrowed it down to being some kind of black mold.
Dr. Dale Bredesen (15:51): Yeah.
Erik Johnson (15:52): So, the sensation was somewhat familiar to me. And when the doctors and researchers, the CDC was confused by this and were focused solely on a virus, I thought that I could offer my help by telling what I know about the toxic mold. Yeah. And after all the repeated requests, a couple of researchers, Chester and Levine wrote up an abstract on the Truckee teacher cluster saying that this was a sick building incident and there seems to be an association with the chronic illness that they were about to name Chronic Fatigue Syndrome. And they’d observed other class down at Elk Grove near Sacramento where teachers were similarly ill and EPA headquarters in Washington, DC. These buildings were making people sick in a permanent chronic type of way that was similar to the mystery illness. And this abstract also called for further research.
Dr. Dale Bredesen (16:53): Interesting. And obviously one of the big differences between getting EBV and having mycotoxin exposure is you can walk into a building that has mycotoxins, and if you’re one of the sensitive people, you know it fairly quickly, that you’ve been exposed. Whereas if this is about EBV you don’t walk into a building and say, “Oh my God, there’s EBV here.” You don’t have that sensation. Now, when you’ve gone into these various sites, for example, the site at Incline Village, the school, did you get that feeling quickly? Could you notice that, yes, something is affecting me here?
Erik Johnson (17:30): Yeah. It was so overpowering that I was fully, everybody was fully aware of it. And there were many people were using the side door to try to avoid that front entrance.
Dr. Dale Bredesen (17:43): Interesting. Wow.
Erik Johnson (17:45): And what’s really peculiar is that other people evaded the chronic illness, they got the flu, but they stayed away from that area and recovered. And the researchers felt that if you recover, that means you’re not chronic. So therefore, you’re not included as part of the data set for study in the mystery illness. And this abstract that I refer to Chester and Levine, 1994, they even said that of this teacher’s lounge, 10 teachers got sick except one chose to get out of that room and go sit in his camper, outside to grade his lessons and spend his time. And he was the only one out of that group to recover.
Dr. Dale Bredesen (18:29): Interest. So, in that case, yeah, acute fatigue syndrome, but not a chronic fatigue syndrome?
Erik Johnson (18:33): Yeah.
Dr. Dale Bredesen (18:34): Very interesting. And so then could you talk a little bit about what was it that was actually discovered right there at the entrance that was so suggestive in terms of mold and mycotoxins?
Erik Johnson (18:46): Well, this was fairly modern school in the sense that it was all up to date and very nice and plush and they put carpet in the school. Now it snows quite a bit, and all the students were tracking in mud and snow on this carpet. So the front entrance stayed soaking wet all winter long, in their summer would dry out, and this toxic sensation would die down, but every winter it would get wet again, this toxic sensation would reactivate. It was right there at the school, and it was pretty clear that it was in the carpet. And later on, Stachybotrys was discovered growing in the carpet backing under that carpet. And after the incident, after the researchers had given up looking, the school simply removed all the carpet and the illness level abated.
Dr. Dale Bredesen (19:39): Interesting. Fascinating, actually. Did they ever bother to do an ERMI score or HERTSMI score or was this pre ERMI scores and HERTSMI scores?
Erik Johnson (19:48): Yeah, this was long before any such testing existed.
Dr. Dale Bredesen (19:53): I see.
Erik Johnson (19:54): And one of the things that really struck me was that here we have an obvious toxic mold incident investigated by researchers the world over, by the CDC, by the finest researchers, the top institutes, and not a single person brought up toxic mold as a possible a factor in this incident.
Dr. Dale Bredesen (20:15): Yeah.
Erik Johnson (20:15): So really it appears that the level of knowledge of awareness of toxic mold was so low in those days that the possibility of even considering it was not on the radar yet.
Dr. Dale Bredesen (20:28): Fascinating. I’m so fascinated by the history of medicine, because if you look at the history of digoxin and how it was discovered and clonidine and what started as quinine and how that was discovered, scurvy and how that was discovered. And then of course, Semmelweis and the whole story of puerperal fever and how much at-risk people who deliver babies are. Just incredible how the medical community has in each case kind of held back the innovation to understand that, yes, there’s something fundamentally new here that we need to recognize, and here is a classic example. So maybe you could talk for a minute about your own medical course since then. So, since you had that, how have things gone, and what have you done that’s been associated with marked improvement?
Erik Johnson (21:23): Well, because I was aware of the toxic mold factor, and so were the others such as the casino employees, we simply quit, found another place to work and recovered to about 80%.
Dr. Dale Bredesen (21:35): So just removing the exposure alone? But as they always say, “Until you get out of the water damage building, you’re not going to get better.” So, all right, please continue.
Erik Johnson (21:48): Well, Lake Tahoe has a nice handy desert handy, it’s only an hours drive east of us.
Dr. Dale Bredesen (21:54): Yeah.
Erik Johnson (21:54): Simply drive off the mountains and head out Highway 50, America’s loneliest highway, and you’ll be out in the middle of nowhere. Just barren sagebrush and sand. And I thought there was any place likely to be free of mold that was it.
Dr. Dale Bredesen (22:09): Yeah.
Erik Johnson (22:10): So, I simply drove out there and the results were incredible. Just by spending time out in the desert I was recovering so much that by the time Dr. Cheney asked me to serve as a prototype for this new syndrome, I said, “I can’t do it because I’m too recovered. I can’t represent the severity of this illness properly.”
Dr. Dale Bredesen (22:33): Yeah.
Erik Johnson (22:33): And he said, “Well, that doesn’t matter because you’ve got the immunological sign, symptoms of the Epstein-Barr virus syndrome. You’ve got all the other aspects that we need to demonstrate this to the Center for Disease Control. So go ahead and we’ll just work out the mold situation later.”
Dr. Dale Bredesen (22:52): Yeah.
Erik Johnson (22:53): But I started on a program of mold avoidance immediately and have been able to sustain my improvement, thanks to rigid adherence to a mold avoidance protocol.
Dr. Dale Bredesen (23:07): Very interesting. So, you’ve come back to something you said earlier, you pointed out the chronic EBV, Epstein- Barr is associated with about a 50% mortality. It’s strikingly high. And that’s typically, as you pointed out, it’s cancer related things like Burkitt’s lymphoma and things like that, but it’s also organ failure related. And now, as I understand it, most of the people who had this chronic syndrome did not end up passing away from your typical chronic EBV, is that fair to say?
Erik Johnson (23:37): Absolutely. And that was a mystery to the CDC.
Dr. Dale Bredesen (23:41): Yeah.
Erik Johnson (23:41): In fact, they checked up on us occasionally and we hoped that this meant that they were going to take serious interest in pursuing this. But it turns out that it was really just a headcount to see if we were dropping like flies or not.
Dr. Dale Bredesen (23:58): Yeah.
Erik Johnson (23:58): And since we weren’t succumbing at an unexpected rate, or at least not a rate that was so alarming that it would warrant a new investigation, they apparently decided that they could attach no further importance to the original cohort.
Dr. Dale Bredesen (24:15): Yeah. So, it’s been almost 40 years since this happened. And there obviously hasn’t been another big outbreak like this. Do you have a sense for why it happened that year, at that time, in that community? Now, obviously you talked about the Stachybotrys presence there, but, but obviously there, there are molds around other places at other times. Do you have an idea about what really brought this to the forefront at that time?
Erik Johnson (24:47): Yeah. In 1985, we had an algae bloom, which was sort of unprecedented for Lake Tahoe. We haven’t seen anything like it before or since.
Dr. Dale Bredesen (24:58): Hmm.
Erik Johnson (24:59): And it appears to me that the reason for that is the pollution cloud from the San Joaquin Valley, a major agricultural region in California, up wind of us, the pollution cloud was slowly creeping up the Sierra Nevada Mountains. But every time we’d drive over Donner Summit and look down, it was always comfortably, the brown cloud was beneath us.
Erik Johnson (25:20): And we sort of hope against hope so that it would always stay down in the valley where it belongs, but it was not to be.
Dr. Dale Bredesen (25:27): Yeah.
Erik Johnson (25:27): And in 1985, it finally crested the mountains, spilled into the basin and turned our beautiful air, a hazy, horrible blue.
Erik Johnson (25:37): The whole time I was growing up at Lake Tahoe, you could look the entire length of the lake and 30, 40 miles away see beautiful green trees at a distance. And within a month it was all blue haze and shrouded in mist and it has never gone back to its former pristine state. And along with this pollution cloud, we had an algae bloom, not just at Lake Tahoe, but Donner Lake and various other small mountain lakes higher up. And I think that that shift in the ecological terrain cost cyanobacteria to become more aggressive grow and proliferate and produce these sinal bacterial toxins, which we now know to be extremely harmful.
Dr. Dale Bredesen (26:24): Sure. Yeah. It’s a good point because there’s been such interesting work by Dr. Paul Allen Cox on cyanobacteria, L-BMAA, is one of the important toxic products and its relation to amyotrophic lateral sclerosis. And he even has a clinical trial going on. So these medical detective stories are just fascinating, and they affect so many of us. And so, Julie, let’s come to you for a minute. I know you’ve had your own medical detective story as starting with cognitive changes, but ultimately coming to the point of babesia and now also looking at mold in your own home. And so how did you come to that conclusion? And what’s your current status?
Julie Gregory (27:08): Well, as you know, I resisted the whole mold aspect of my journey. So I learned, I had CIRS, Chronic Inflammatory Response Syndrome, several years ago. I want to say maybe 2016. I did some basic testing like C4A and TGF-beta 1. And all of the tests that you recommended that I have done fully expecting everything would be perfectly normal, and they were all way out of range. So I recognized that I had a problem and I worked with a practitioner, who was skilled in finding the causes of CIRS. And one of the most striking things that jumped out on my profile was that I had the babesiosis and it was a very acute case. My titers were extremely high. We went ahead and treated that over, I want to say a period of a year, and my CIRS biomarkers came down.
Julie Gregory (28:11): So, I thought, “Wow, I think I’ve got a handle on this.” Well, over time those CIRS biomarkers have started to creep up again. So, despite my resistance, I did a urinary mycotoxin test. And once again, I got the gold star. I had many molds that were off the reference range. They were so high. It made it clear to me that the home that we had already remediated must still have mold or there was mold in my body that I hadn’t detoxified yet.
Dr. Dale Bredesen (28:49): Right.
Julie Gregory (28:49): I recently had Brian Karr, our last guest, the mold investigator, I had his team out to the house and they did a real thorough mold inspection, and it took seven hours. And they said that in normal homes, they find about 20 potential sources of mold. And in my home, I think because I have three different attics, he found 40 potential sources. And this is in a home that has already been remediated. We’ve already torn all the bathrooms down to the studs and the laundry room, remediated, all that. And they did check those, but I will be fascinated to get his report back in the next three weeks that will let me know definitively where the mold is coming from. And he’s also going to give me a roadmap for how we can remediate in a very targeted way.
Dr. Dale Bredesen (29:48): Yeah. Fantastic.
Julie Gregory (29:50): Long story, but I’m in the middle of the journey and I fully expect I’ll be at this for the next year or so.
Dr. Dale Bredesen (29:58): Yeah. And I think this is the whole history of medicine, that medicine is trying to cure a very, very complex organismal system, multiple systems, and so there are a lot of things that we just don’t understand. And we just heard from another person this morning, who’s going through this, unfortunately with her husband and just saying, there’s just so much, that’s not understood. You go to a classical memory center, and they just say, “Yeah, this person has Alzheimer’s. We have no idea why. There’s really not much to do.” So, beginning to understand what are all these things that are contributing? Whether it’s cognitive decline, whether it’s, as we heard recently, multiple sclerosis in association with EBV infection, whether it’s a mycotoxicity.
Dr. Dale Bredesen (30:45): There’s, there’s so much for all of us to learn, but the great news is we’re seeing real actionable targets and real outcomes with people getting better. And of course, Julie, you’re a fantastic example of that yourself and Erik, if you could just say, where do things stand today? Do you consider yourself to have chronic fatigue today, or do you feel that you really have beaten this and are you still treating it?
Erik Johnson (31:14): Well, thanks to mold avoidance I managed to hold my symptoms in check for all these years, consistently with perfect control. Just so long as I have the ability to avoid these source points, these plumes and decontaminate when I’m forced to go through them. But one of the major considerations one has to consider what happened with the Truckee teachers is they were only getting sick while they were at work. And yet this was enough to result in a chronic illness.
Erik Johnson (31:44): So just like them, it’s not enough for me to attend to the mold in my house. I have to be very careful when I’m out and about not to spend too much time in a bad place and especially not to carry it back with me on my clothing, in my hair, let it get into my bedding because that alone is enough to be a driving force in my chronic illness.
Dr. Dale Bredesen (32:10): And what’s your preferred way to get rid of it from your hair and from your clothing?
Erik Johnson (32:14): Showers. Shower and a change of clothing as quickly as possible. I learned early on that after feeling a sick building, if I can decontaminate within 30 minutes, I could avoid 90% of what would otherwise happen.
Julie Gregory (32:29): Wow.
Dr. Dale Bredesen (32:30): Wow. Very interesting. And have you been on Dr. Shoemaker’s protocol [inaudible 00:32:35] binders and things like that? Or have you really focused on of the source?
Erik Johnson (32:41): Only on removal and I never did any protocol. I never did Dr. Shoemaker’s protocol. And the reason my story is in his books is because it supported his theories.
Dr. Dale Bredesen (32:52): Sure.
Erik Johnson (32:52): And he was the only doctor in the entire world to respond with an accurate sense of identification that the Lake Tahoe outbreak was a biotoxic related illness.
Erik Johnson (33:05): And no other doctors have come back to check on this in spite of seeing this story in his books.
Dr. Dale Bredesen (33:13): No, I think Dr. Shoemaker really recognized a problem that is widespread, and even a concept because it’s multiple different agents, and I think he’s made a tremendous contribution to medicine and to understanding disease. So let’s go there to, we have some fantastic questions here today. Valerie says, “Looking forward to CFS. I’ve treated a lot of this with TCM and supplements over the decades. Very wet conditions, leading to mold, never considered as a cause with a cluster of glandular fever too.” So, yeah, good point. And again, I think we’re beginning to understand how all these things relate.
Dr. Dale Bredesen (33:48): You talked about mold and mycotoxins, but EBV and so the re-outbreaks, so there’s some interesting relationship here. And of course, there was the recent paper on multiple sclerosis associated with B V. But is it going to turn out to be only EBV or was there something specific about those people that developed it in association with EBV? And I think that how these all relate and how they give you the fatigue, what are they doing to your mitochondria, to your support?
Dr. Dale Bredesen (34:18): I remember when my wife and I both got sick with Delta the most striking thing was complete lack of energy, just like suddenly someone removed all the energy, very striking. And then Rajia asks, “The what study? Where can I find this study?” So would you suggest that Rajia read Dr. Paul Cheney’s reports on this Incline Village Syndrome?
Erik Johnson (34:46): Well, Dr. Cheney’s reports are very good, except he was missing some important pieces of the puzzle.
Dr. Dale Bredesen (34:53): Right.
Erik Johnson (34:53): And since he didn’t factor them in a lot of people read Dr. Cheney’s work and consider that’s the sum total of knowledge on the subject.
Dr. Dale Bredesen (35:02): Right. So maybe it would be good for her to read, Life in the Era of Water Damaged Buildings: Surviving Mold, by Dr. Shoemaker and Erik, have you written up your own story on this?
Erik Johnson (35:15): Yeah. It’s been in several books, documentaries, and of course it’s in the best and most complete account of my story is in, Surviving Mold.
Dr. Dale Bredesen (35:27): That’s a fantastic book. And then Maria says, “Wow, this is so fascinating.” Yeah, I agree, Maria. I think all the detective work in medicine is really teaching us, all of us, a lot. It says, “I started noticing cognitive issues after an EBV outbreak two years before I was officially diagnosed.” So really important and important obviously to know whether these could have been related to demyelination or related to more of a gray matter degeneration, more like what we would see with Alzheimer’s. The whole area of brain fog is just becoming more and more important with long COVID and with so many different things. And of course, younger and younger people noticing this, and then Maria mentions, “Can exposure to toxic mold reactivate EB V symptoms?” And it sounds like that’s exactly what you’re pointing out, Erik?
Erik Johnson (36:20): Yeah. Not just EBV, but many other things like cytomegalovirus or parvovirus or Lyme disease. In fact, this was noted during the outbreak that there were many secondary infections being reactivated by whatever was going on. Dr. Cheney called it Agent X.
Dr. Dale Bredesen (36:39): Yeah.
Erik Johnson (36:39): But since we had a test for EBV, that was the one that was entered into the literature. And that’s what everybody thinks Chronic Fatigue Syndrome was all about. Even when there was so much more to it.
Dr. Dale Bredesen (36:49): Yeah, this is a really good point. And you know, it is interesting to me, herpes virus, as an example, responds beautifully to stress. So you have some stresses, everybody knows, you get a little outbreak here on your lips, so incredibly common. And so it’s absolutely set up to respond to this change in signaling. So, EBV is another herpes family member. So no big surprise that you get this other problem and then boom, you get this reactivation. And I think it’s something that we all need to be aware of.
Dr. Dale Bredesen (37:20): And Valerie says, “Love citizen scientists.” Yes, so both of you two, “You are the real change drivers looking at what’s actually going on.” And again, the difference is you don’t have someone telling you, if you say the wrong thing, you’re going to lose your grant or you’re not going to get tenure. You’re looking for real answers for real people, which is fantastic.
Dr. Dale Bredesen (37:43): Keely says, “It seems that mold weakens the immune system, which allows past viruses to become reactivated. But the virus is what usually gets the brunt of the blame.” Yeah. Great point. And of course we know that these mycotoxins are often immunotoxins. And one of the things that they’re trying to do, the molds are trying to suppress your immune system so that you will allow them to live in you because you need to be a little immunosuppressed to allow them to take up residents there. And then Di says, “I believe all our family has EBV.” And yeah, it’s a good point that the vast majority of us have exposure to EBV, that’s just a fact of life. It’s almost part of the viral microbiome.
Dr. Dale Bredesen (38:23): So, we have to recognize a lot of this is about how we respond to it. Because most of us are going to get exposed at some point. She says, “My mom had Raynaud’s My dad had peripheral neuropathy. They were very healthy, except for those. His mother didn’t receive diagnosis of NCI until 92. Dad is almost 98 and still NCI free. Fantastic. He eats wheat galore. Uh-oh, probably has insulin resistance. Yeah. And no questions.
Dr. Dale Bredesen (38:52): Some people can be resistant to doing the wrong things. That doesn’t mean they’re the right things to do. It just means you’ve successfully done the wrong thing and lived to tell about it. He says, “It’s all the luck of the draw.” Well, I think that’s what we’re discovering in medical research. It’s more than just the luck of the draw. Yes, genetics definitely plays a role, but there are things, just like what you’re describing with the Incline Village Syndrome, where there are specific ones.
Dr. Dale Bredesen (39:21): It’s just that it’s very complicated. It says here, “Did play tennis till 89, never smoked and drank.” Okay, great. And then Ogee says, “Mold affects the gut.” Absolutely, “As well as the sinuses, stops motility the guts and when the gut is not moving, then there can’t be exchange of nutrients with the cell. It causes the various viruses to reactivate. Obviously, it also has impact on the immune system.” Ogee follows up by saying, “Trichothecenes, mycotoxins are immune suppressants.” Absolutely. I see you’ve got a nice poster here right behind you. Erik, maybe you take a minute and just explain the poster to us?
Erik Johnson (40:00): This poster is a compendium of the early efforts to look into a toxic mold. Most of it was derived from this book, the 1994 proceedings manual by Eckardt Johanning and Dr. Chin Yang. And it was an attempt by the indoor quality profession to assemble as much information they could about the newly discovered toxic mold Stachybotrys and its potential health effects. And this poster behind me was made by a researcher who got all these early reports together, made a terrific poster presentation about it. And it turns out that in Canada, the same thing was going on at a hospital where the employees, not the patients, but the employees came down with, for all intents and purposes, same thing as Chronic Fatigue Syndrome, the reacted reactivated EBV. And it was found to being close association with the trichothecene producing molds, Stachybotrys in particular, and this is the first report of clusters of illness matching the Chronic Fatigue Syndrome in which people, a large percentage did not recover after removal from the hospital.
Dr. Dale Bredesen (41:15): Amazing. Okay. And then Di says, “It’s so scary how rampant mold is. Unreal” how doctors in these days don’t recognize it. Yeah. I think that’s a really good point. We go back to a little over a hundred years when people were talking about, “Yeah, undergoing radiation was a good thing for you, it made you healthier.” And of course it turned out that yes, tiny amounts because of a hormetic response. So, people just did more and more until ultimately they damaged their bones and, and ended up getting lethal doses of radiation. We all have to learn about these things. These are complex systems.
Dr. Dale Bredesen (41:51): Suzanne says, “I’m from the San Joaquin Valley, nasty place, yes. And we were all taught in medical school that the so-called valley fever you can get from Coccidioidomycosis, another fungus. Where most people do just fine with it, get it, get rid of it. And then some people will die of it very much like COVID where many people do well and then some people die.”
Dr. Dale Bredesen (42:13): So again, it’s the response to these various pathogens, so critical and brings it back to all of us, how we have to keep our resilience. Sherry asks, “How do we get the testing done?” And of course, there are different kinds of testing. And I know Julie, you’ve talked with Brian Karr, and you’ve talked about the testing done in your home. There’s also, of course, the testing you’ve had done in your blood looking specifically at inflammatory markers, C4A, a TGF-beta 1, MMP9, for example, which are very helpful. And these are ones recommended by Dr. Shoemaker, but then there’s also the urinary mycotoxins and then some people will also look at immune responses. Do you have titers in your blood against specific mold species? So that’s another one. Erik, have you been tested for these various molds?
Erik Johnson (43:04): No, I have not.
Dr. Dale Bredesen (43:04): Okay.
Julie Gregory (43:07): Dale, I just, I just want to hop in because it’s very difficult to find a practitioner who can order those tests. Something that everybody listening can do now is they can order themselves a RealTime Laboratory urinary mycotoxin test. You can do it without a practitioner. I think it’s several hundred dollars and maybe $350. So it’s expensive. But if you have high amounts of urinary mycotoxins, there’s a good chance that you do have mold in your house. And from there you can do an ERMI, which is something you can do yourself. You could also do gravity plate testing through ImmunoLytics, something you can do yourself. Each of those gravity plates is about $35.
Julie Gregory (43:54): And if you have positive signs of mold in your house, you then have to find the source. And that’s the most difficult problem. And that’s where Brian’s company, We Inspect, is so handy and they are a national company, and they will go to your home wherever you are. They’ve got teams all over the United States. So it’s kind of a long answer, but that was such a great question.
Dr. Dale Bredesen (44:20): Yes.
Julie Gregory (44:20): And we have to remember that a lot of people don’t have access to practitioners that are familiar and know to order C4A and TGF-beta 1 and all of those tests.
Dr. Dale Bredesen (44:31): Yeah. It’s a great point because one of them, as you say, is really looking at the mycotoxins themselves, the urinary test, like the real time test, whereas the C4A is really looking at your response to it. Are you inflamed because of this? And I would add that when we did the test, when we did the teaching, the ReCODE 2.0, we had Neil Nathan, who spent several hours going through it. He’s really one of the world experts on mycotoxin related illness and sees many, many patients, wrote a wonderful book himself, Toxic Heal Your Body. And I recommended it highly to everybody. And so he did teaching for this so that practitioners could understand what test to order. And, and I should mention real time is reimbursed by Medicare. If you have Medicare, you can often get that as now.
Dr. Dale Bredesen (45:20): I assume your practitioner may have to order it to get reimbursed, but you can look into that further. There is some hope there, and I do think it is amazing. So many of us are exposed to this. One of the things that’s been so difficult is you’ll have two spouses, and then you’ll have one person who has all sorts of problems with it. And another person may have nothing. They’re able to handle it. They’re able to excrete it. They’re able to deal with it. And so it looks like, well, it can’t be an exposure because they’re both living in the same house, but in fact it is an exposure and it’s just that one person happens to deal with it better than the other.
Dr. Dale Bredesen (45:55): So this is a complicated area. And I think Dr. Shoemaker really changed the world with his discoveries and suggestions and we all owe him a debt of gratitude and we’re beginning to understand the role it plays in cognitive decline and the role it plays in brain fog and in rashes and in chronic fatigue and all these sorts of things.
Dr. Dale Bredesen (46:16): Suzanne says here, “Pesticide use and resulting brown haze is getting worse in San Joaquin valley. So many babies born with asthma.” Great point. “What has the pollution done to our brains?” Well, there’s of course, ongoing studies with air pollution and risk for Alzheimer’s, no question. And there’s some were coming out of USC for example. And there’s no question that there is increased risk for Alzheimer’s disease with high levels of air pollution. “Say I was good on mold but have high levels of tin.”
Dr. Dale Bredesen (46:46): Okay. So again, metallic toxins another concern and yeah, this may have been from exposure to a number of different things. Marley asked, “Does Brian’s team travel to any state?” And it sounds like from what you’ve said, Julie, they will go anywhere?
Julie Gregory (47:01): Yeah.
Dr. Dale Bredesen (47:01): Which is great. And do any of these inspectors do it by Zoom or are these all onsite?
Julie Gregory (47:09): Well, Brian himself wasn’t at my house, but he did send two inspectors out. And when they thought they were done, Brian came onsite via Zoom and he said, “Oh no, you’re going back in.” And they had two more hours of testing to do. So Brian got involved through the use of a camera, I think.
Dr. Dale Bredesen (47:29): Yeah.
Julie Gregory (47:30): But I do think he has put together a course so that people can do a DYI method, very similar to what his group is doing. And I look forward to learning more about that so that we can share with our listeners.
Dr. Dale Bredesen (47:47): Yeah. Great point. And then Di is asking, she says, “Can you recommend someone to inspect our homes in Atherton, California, 60 years old?” Yeah. And this is absolutely a concern. And we would recommend, We Inspect. I think is a great way to do it. Of course, Michael Schrantz is another one who’s done a fabulous job at looking at this and we really appreciate the work that he’s done over the years in looking at homes as well. And there are others. I know Dr. Shoemaker has mentioned some. And, Erik, as far as your own home, do you have a preferred mold inspector for your home?
Erik Johnson (48:31): No. My senses are so acute that a mold inspector is the last thing I need.
Dr. Dale Bredesen (48:36): Yeah. I see. Yeah. You are a good a mold inspector yourself because you’ve got that response, so you’ll know very quickly if there’s mold there. And then Valerie says, “As a farmer, I was farmed by mold, cleaning out silos with moldy dusty grain.” Very interesting, “Plus mouse species.” Yeah. Dr. Anne Hathaway has described a case where the person had in the ducts, a person developed Lewy body disease, and in their ducts, it turned out to be a combination. It was mold and mold toxins, and it was rodent feces, unfortunately, another problem. Let’s see and this is farming big acres, grain with trucks sprays, mouse plagues. Yeah. These are all concerning.
Dr. Dale Bredesen (49:18): So yeah, it really does take some hard work to get to the bottom of these things sometimes. Marley says, “What about ozone using to clean house seasonally like machines used in hotels to rid smoke?” And, Erik and Julie, what do you say about use of ozone?
Erik Johnson (49:38): Well, Professor Harriet Alman was not impressed with ozone and launched a class action suit against the ozone manufacturers for misleading people and possibly causing irreversible lung damage because people weren’t properly warned about the dangers of using ozone while they’re trying to breathe the same air. And my feeling is that if you can take care of the problem, if you’ve got toxic mold, it’s got to be removed.
Dr. Dale Bredesen (50:07): Yeah.
Erik Johnson (50:07): So these measures of trying to kill it can actually unleash dead dried spores and make your problem worse. So if you’ve got to fix the problem, go ahead and fix it. Don’t play with all the other stuff.
Dr. Dale Bredesen (50:20): Yeah. It’s a good point. And I know when we talked with Brian a few weeks ago, one of his points was people try to kill this instead of actually removing it. And it’s just a short-term solution. It’s not a long-term solution, unfortunately. So I know we’re coming here to the end of the hour. Julie, final words, anything, what do you recommend to people who suspect that they may have mold or mycotoxin related illness?
Julie Gregory (50:47): I would highly recommend that you consider doing the urinary mycotoxin test so that you can confirm and or consider testing your house with an ERMI or the ImmunoLytics gravity plates. And if you get evidence that there is a mold indicated, I think you need to pursue it further and you need to identify the source of the mold, which is very difficult to do.
Dr. Dale Bredesen (51:16): Yeah. Thank you.
Julie Gregory (51:16): And that’s why we need companies like, We Inspect.
Dr. Dale Bredesen (51:19): Exactly. Yeah. And I think it’s important to point out, many, many people now have gotten better from this. This is not a one-way street. Again, just as we’ve seen with Alzheimer’s, as you figure out what’s actually going on and especially as you start as early as possible repeatedly, you see things improving. Something that hasn’t really been recognized before. And I think, Julie, you’re a great example of that. And obviously, Erik, with what you went through, you’re another great example.
Dr. Dale Bredesen (51:47): So, Erik, final words, what would you tell people who are concerned about mold and mycotoxin related illnesses?
Erik Johnson (51:55): Rely on your senses, trust your own judgment. If a place makes you sick, believe it, because it probably is.
Dr. Dale Bredesen (52:02): Yeah. And do you have a sense for how many different diseases out there are people not recognizing that really have a component that could be mycotoxin related?
Erik Johnson (52:14): Well, knowing the protein synthesis inhibition properties of toxic mold, such as Stachybotrys, I would say that there isn’t any illness that would not be exacerbated by toxic mold exposure.
Dr. Dale Bredesen (52:27): Such a concern. All right. Well, this is just absolutely fascinating. Thank you so much, Erik. Thank you so much, Julie. I’m sure we need to talk about this subject again at some point, but I think it really helps for all of us to understand the potential contributors, what we can do about them, how we can get tested, and how we can potentially treat them.
Dr. Dale Bredesen (52:47): So again, thanks for the great work you’ve both done as citizen scientists. We’re really in your debt. All right. Thanks very much, everyone.
Julie Gregory (52:56): Thank you.
Dr. Dale Bredesen (52:56): We’ll see you next time.