Investigative Journalist Mary Pfeiffer on the Lyme Epidemic

investigative journalist Mary Beth Pfeiffer

Investigative Journalism and How Climate Change and Lyme Are Connected

Since 2012, Mary Beth has become the leading US investigative journalist on the growth of and controversy surrounding Lyme disease. A hidden menace that she argues has been fostered by a warming world and a poorly managed medical approach. Climate change and its connection to the Lyme epidemic are what Mary Beth Pfeiffer’s groundbreaking book “Lyme: The First Epidemic of Climate Change” discusses.

Where you can find more of Mary Beth:

Book Link

Her Website

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Lyme: The First Epidemic of Climate Change

Mimi:
Mary Beth, thank you so much for coming on today. I really appreciate your time. And I’m excited to hear about your book and all the research that you’ve done with Lyme.

Mary Beth:
It’s my pleasure. Thank you, Mimi.

Mimi:
Okay, great. Your book, it’s, “Lyme: The First Epidemic of Climate Change,” you’ve had out, but now the paperback is coming out on Amazon as well. So I would love to just dive in with that first, because I want to see why you decided to start covering Lyme.

You have been an investigative journalist for 30 years and you were covering mental health in jails and prisons, but you switched over to Lyme. Why did you decide to start focusing on Lyme, which is really an unspoken and not covered topic?

Mary Beth:
It really is, and I quickly discovered that there was another version of Lyme disease other than the one that I had come to believe. I started in 2012 to cover Lyme disease because it was a big story where I lived. In other words, there were a lot of people with Lyme disease in the Hudson Valley of New York. I expected to write a story about rising case counts, the response of health officials, people going to the doctor, getting treatment, and going on with their lives.

I found a much different version of Lyme disease than I expected. And it led me to believe correctly, I think, that a lot of people have a misconception about Lyme disease, that it is diagnosed by a test, that it shows up as a rash, and that it’s not really a big deal, except I also found, in many cases, that sort of were considered to be anomalies if you will.

To me and I think to a lot of people out there, people hear horror stories about Lyme disease a lot, about a neighbor whose child missed months of school or someone who was disabled and couldn’t work because of Lyme disease. It was my impression and I think it’s the impression of a lot of people out there that these aren’t real the typical or worst cases in terms of how Lyme disease manifests itself. This is a huge part of the problem of Lyme disease.

We can talk more about that, but I found that Lyme disease was something much more serious and further, that it was really downplayed by medicine as something we can treat and it was no big deal.

investigative journalism book about lyme disease

Mimi:
Do you think there is a reason why this is happening? There are so many cases, including myself, where we go to the hospital, the emergency room, because we’re having an episode or something either feeling like you’re having a heart attack and then they just brush us off and tell us there’s nothing wrong with this. It’s anxiety. Go see a shrink.

You almost feel like you’re being gaslighted, right? You’re like, “I’m not going crazy. I do see these symptoms.” This is not rheumatoid arthritis. This is physical symptoms. 

Mary Beth:
Lyme disease is very closely controlled in the United States, and by virtue of that, worldwide, but there’s one view of it, the view that is put out by the Infectious Diseases Society of America, and that view holds easy to diagnose, easy to treat. But even the IDSA and the CDC acknowledge that 10% to 20% of everyone who’s treated for Lyme disease will have lingering symptoms.

There’s actually one paper out there that shows 15 years later, 5% of people were still suffering symptoms of Lyme disease. Now, you add up all those numbers year after year, we’re saying that 500,000 people get Lyme disease a year. That would be 50,000 to a hundred thousand people who have lingering symptoms, 5% of that, 50,000 15 years later. So add all that up year after year after year, and you have a serious problem.

But the mainstream thought is the test works and treatments, by and large, work. They do work for a portion of the population, but there’s a huge number of people that they don’t work for. When you go to the emergency room, you have a flare up and many other people, they are told, “We read the guidelines. The guidelines say you’re good. You don’t have Lyme disease anymore.” The test cannot distinguish between old and current infection.

“The problem is mainstream thought on Lyme disease and it is flawed.” – Mary Beth Pfeiffer

Lawsuits Against IDSA and The Investigative Role Mary Beth Took

Mimi:
Yeah. So how did you get into… I see you have lawsuits against the IDSA and it is about this topic, right? It’s about doctors that are treating not the way that they want to. It’s long term antibiotics or other alternative treatments, off-label drugs to be tried to be applied to Lyme. These doctors are getting in trouble. So how did you get involved with these lawsuits?

Mary Beth:
Well, when I began my research, I turned to doctors who were treating Lyme disease. I found out that in New York many of the doctors who specialized in Lyme disease had been investigated by the state licensing board. They had been often harassed for years after year. Eventually, charges would not be brought and often, not much came of these investigations, but it really scared a lot of people, a lot of doctors away from treating Lyme patients, but that’s one side of the legal story.

There was a lawsuit filed in 2017 on behalf of Lyme disease patients who became ill and were ill many years later, many of them greatly debilitated, and it was filed against the Infectious Diseases Society of America against seven of the key doctors who wrote these guidelines and against eight insurance companies. It basically said, “All of you conspired to keep us from getting the care that we needed well.”

The long and short of that is these eight insurance companies eventually settled the lawsuit. We don’t know what they settled for, but they did the math and decided that we’re just going to presumably pay something and not have to deal with this anymore.

investigative journalist headshot

That’s kind of the good news for Lyme patients. The bad news is that the lawsuit very recently was dismissed. The plaintiffs who filed the lawsuit and their lawyers couldn’t really come up with the needed records that they say would not be from invited by the IDSA or the doctors who were defendants.

They and some 50 were said to have been brought up on charges, were a key reason why the lawsuit was filed because Lyme disease patients simply can’t get the care that they need.

There’s been research done by Lymedisease.org, showing that many patients have to drive 50, a hundred miles, get on an airplane, sometimes they come over from Europe to the US in order to get care for Lyme disease because there are so few doctors willing to take the risk to treat Lyme disease and put their license in jeopardy.

Mimi:
And is not covered by insurance, which is crazy. Right? 

Mary Beth:
Well, that was another point of the Lyme disease lawsuits. Yes.

Where Does Lyme Come From and the Parallels Between Lyme and COVID – Investigative Journalist Mary Beth Shares Her Thoughts

Mimi:
It’s kind of hard not to stop and say, “Wait, it seems kind of conspiracy theory” Why is it not covered? Is it just because they don’t want to… The insurance companies don’t want to cover the cost to find this.

So you can’t sit here and accept long haulers exist, but not long haulers of Lyme, right? They’re very similar symptoms. They’re very similar. It seems like that’s could be a second book for you in the Lyme world, comparing the long haulers of COVID and the long haulers of Lyme and how they’re very similar and parallel to the symptoms, and if they’re going to be treatments for them and if it’s covered by insurance.

Mary Beth:
Yes, there are huge similarities between the population of persistent Lyme disease folks and people who get COVID-19 and remain sick long afterward, and many of them are similarly finding that doctors don’t believe their symptoms or doctors dismiss them, tell them they’re anxious, tell them just to wait. 

I have been writing a lot about COVID-19, and it’s really interesting for me to see how my Lyme disease reporting really prepared me to cover COVID-19. There are treatments for COVID-19.

I think one of the key parallels may be that we’re talking a solution. I’d be a little guard about a solution for Lyme disease. It’s very complicated. But at least at the outset, a solution is an off-patent inexpensive drug for Lyme disease, it’s antibiotics.

If you aren’t lucky enough to get over Lyme disease, you fall into the category of rheumatoid arthritis as you mentioned, or fibromyalgia, or anxiety, or depression, and often, you’re treated with other pharmaceuticals. You become a chronic problem, a chronic patient for the pharmaceutical industry. So therein, may be part of the problem that we don’t have a solution to either Lyme disease or COVID because somebody wants to make money off of both of these diseases and the quick and easy cure, that’s not the way.

Mimi:
Could you go out on a limb and maybe say both of these are made in a lab and therefore, that’s one reason why they don’t want to acknowledge it?

Mary Beth:
I am not willing to say that Lyme disease was created in a lab or that COVID was either, at least not definitively.

Mimi:
Right.

Mary Beth:
What we do know is that experiments were performed on borrelia burgdorferi and on ticks in a laboratory. That much is really clear and it’s documented in Kris Newby’s book. 

Mimi:
Yeah, we interviewed her with, “Bitten.” For anybody who’s listening, if you haven’t read that book, it’s a great book to also read, especially in the time that we’re living in right now.

Mary Beth:
She raised some really important questions. Where did Lyme disease come from? I don’t know that the problem we have now is directly related to that lab work that was done because Lyme disease has been living in the environment for a very long time.

My book discusses some of the environmental reasons why it has exploded and we can talk about that too. But as far as COVID and the lab in Wuhan, China, I think it’s also pretty clear that experiments were performed on coronavirus there. Now, it’s quite possible that the organism leaked out of that lab. I think that’s probably as far as I would go. We need to do a lot more research and a lot more study on both origins of those diseases.

Environmental Impact and The Lyme Epidemic – Their Connection

Mimi:
So could we go back to you were just mentioning the environmental impacts? Why do you think, even in the past year, the cases of Lyme that even the CDC’s willing to admit has doubled?

It is an epidemic and it’s actually becoming more acknowledged as such. It could be because there’s a tick explosion as far as the environment and it’s growing around the United States, but I also think maybe there are other ways you can contract Lyme besides just a tick that we’re not talking about either, it’s gestational, via sexual. 

So maybe you can talk about why you think it’s exploding, either if it’s environmental because of the climate change or if there’s anything else.

Mary Beth:
Well, we have archival data as to where ticks that cause Lyme disease lived 20 years ago, 40 years ago, 50 years ago. What we see in Europe and in the United States ticks are climbing latitudes. They’re moving north. There’s a pretty clear correlation that they’re moving to places that are now warmer than they once were.

For example, Canada is a new frontier for Lyme disease and it is growing a lot in that country north of the United States. The reason for that I think is pretty clear that it’s warmer there. But aside from a warmer world, we’ve adulterated the world in many ways. We’ve sliced and diced our forests. We’ve created suburban housing developments, and these are just wonderful places for ticks to proliferate.

Ticks thrive in the presence of mice. That’s kind of the key thing, the key reservoir for Borrelia burgdorferi. A tick is hatched. It finds its first meal on a mouse and usually, the mouse has borrelia burgdorferi already living in its blood. So mice, deer, fragmented forests, cut-up developments, are perfect places for Lyme disease to proliferate.

Mimi:
I think that’s also a good point because people think it’s just deer, right? So people think, “Oh, well, there’s no deer in my town.” If you have mice in your house or you have rabbits running around your front lawn, you can have ticks. 

Mary Beth:
Yeah. Small mammals basically are the place that ticks go to get that first meal. So we have mice, we have chipmunks, we have moles, we have shrews, all of those things really support this ecosystem that Lyme disease needs to survive.

Deer do play a role. They just don’t infect the ticks for the most part. 90% of the time when a tick bites a mouse, it will pick up Lyme disease. 10% of the time when it bites at deer, it’ll pick up Lyme disease. But the deer have played a great part in being kind of the last place where the adult tick goes for that last kind of roll in the hay and meets its mate and eventually, falls off and lays eggs. Deer also travel around, as do birds. Birds have really been effective in moving Lyme disease around that.

Mimi:
Oh, birds too. Wow.

Mary Beth:
Yes, they are key to the kind of long-distance flight. You might have a bird that starts in Virginia, picks up a tick, drops it in New York, or picks it up in New York, drops it in Canada. 

Lyme Transmission – In Utero and Sexually

Mimi:
Now, have you studied or investigated how Lyme has been transmitted either sexually or gestationally at all?

Mary Beth:
Yes. I wrote a story for Scientific American a year or two ago on the evidence that Lyme disease can be passed in utero. This is another controversial aspect of Lyme disease that the Lyme disease advocacy community has had to really fight to get accepted in the mainstream. It has made a lot of headway, but it still is not a universally accepted truth. But if you go back into the scientific literature, you will see many examples and documented scientific papers about babies that were stillborn and the Lyme disease spirochete was found in the baby.

There are cases of babies who a year or two, or even a couple of months after birth test positive for Lyme disease without ever being exposed to a tick. So I think it’s pretty clear that Lyme disease can be passed in utero and we really need to be looking for this and treating women aggressively if, in fact, they are bitten by a tick while pregnant.

Mimi:
Yeah. They should almost have that as a test as soon as you become pregnant, to test for it so then you could get treated. They don’t really talk about it, but it’s the cousin of the syphilis family. So if that’s the case, then it should follow along with the same guidelines of how syphilis is passed.

Mary Beth:
Yes. Borrelia burgdorferi is a spirochete. We know that syphilis can be chronic, that it can take many, many months of antibiotic treatment to eliminate. We also know that it manifests itself in the long term in many of the same ways that Lyme disease seems to affect people with neurologic problems, dementia, chronic pain, and such.

Why we have chosen to ignore that this spirochete is very different from the spirochete that causes syphilis is really a mystery. But on the kind of positive side, we have some really terrific research going on now, in particular, coming out Tulane University where Monica Embers has been studying these small macaques, and what happens to them after they are infected with Lyme ticks.

She has found that sometimes when they test positive, she treats them and four months later, they still have Lyme disease in their blood. She can culture it. She can find it in their brains and in their organs. So she basically is proving the case at Tulane University that Lyme disease can persist in the monkey model and presumably, in the human model, even after treatment with the standard courses of antibiotics.

A Lyme Vaccine Is Progress But Not Enough

Mimi:
Is there anything we haven’t covered that you would like to touch on?

Mary Beth:
I think what we also see going on now is encouraging in terms of the Tick-Borne Disease Working Group. That has been brought together under federal law. In Washington periodically, we have a group of advocates, research scientists, and so forth getting together to examine this model of Lyme disease that we have in the United States. They have found significant flaws.

They have documented ways in which the test for Lyme disease repeatedly fails Lyme patients. About 50% of the time when you are in fact infected with Lyme disease, you will test negative. This is not acceptable. We need a better test for Lyme disease.

The problem is that the representation on that working disease group is often met with resistance. You have both sides represented, the side that believes that Lyme disease is a serious problem and the side that believes no big deal. So there’s this ongoing tug of war. They’re still meeting. I can only hope that eventually, the side that sees a problem will prevail. I think it’s made great headway, but I think there’s a lot of work to do.

Mimi:
I do know that with the LymeX, that was a coordinated effort with a private foundation that joined forces with a government organization to acknowledge it and they have been increasing the funding that has gone to Lyme each year. So let’s hope that it continues.

I’ve heard that there’s on the horizon going to be a for Lyme reintroduced again. So maybe there’ll be more headway in the next couple of years as far as recognition from the government.

Mary Beth:
Well, the government has in fact greatly increased the amount of money they’re spending on Lyme disease. It’s still way, way too small. We need millions upon millions more.

Mimi:
I do hear there’s one Congressman and one whose children have been affected by Lyme, so I’m hoping that they keep pushing ahead and bringing awareness.

Mary Beth:
There are many people in Congress who have been touched by this disease. If you talk to Dr. Jemsek, who’s based in Washington DC, he’ll tell you this. He’s treated many of them.

But on your question about a vaccine, I would be very happy to see a Lyme disease vaccine come on the market, but it’ll only partially solve this problem because as we know, ticks carry a lot of organisms. They don’t just carry Borrelia burgdorferi, which causes Lyme disease. They carry babesiosis. They carry bartonelleosis or bartonella. They carry a whole host of viruses and organisms that have been documented in studies, one in particular from Columbia University.

So we’re not going to solve the problem of ticks with a Lyme disease-only vaccine. We’re going to still have to be very vigilant. We’re still going to have to check ourselves for ticks because babesiosis is a serious malaria-like, can be a chronic disease. There are just so many levels that we have to attack this from.

There’s one other thing I would mention. There’s something called nootkatone, which you may have heard about. It is a substance that comes from nature. It’s in grapefruit skins, I believe. It’s also from a tree that can be found in Alaska. This is on the CDC website as a potential preventative for ticks, but it has not yet come on the market in a way that people can easily use it.

The hope is that, for example, it could be put in soap. It has a pleasant fragrance. It leaves a residue of something on your skin that completely repels ticks. That would be a wonderful thing for us to have. The kids come in at night, you put them in the bathtub, you give them some soap with nootkatone in it and you don’t have to worry. We need things like that to really just prevent ourselves routinely against ticks.

We also have permethrin, which is derived from chrysanthemum flowers, or at least a synthetic version of that, and that has been used by the military for many, many years. It’s used by workers outside who cut down trees and new landscaping and so forth. It’s applied to their clothing. It’s embedded in the clothing. It doesn’t come off when you wash the clothing.

Mimi:
Oh, wow.

Mary Beth:
And it not only repels, but it kills ticks. We can all buy permethrin at the hardware store or online and apply it to our clothing. I do this at the beginning of the tick season in New York. When we go out, we don’t have to think about it if we have that clothing, those socks, those shoes on, and it’ll prevent from being bitten by a tick.

Mimi:
Oh, that’s great. Okay. So for anybody who wants to read Mary Beth’s book, you go to Amazon. It, “Lyme: The First Epidemic of Climate Change.” Is there any other place that they could follow you or do you have a website too?

Mary Beth:
Yes. Please look at my website. Visit it. It’s called thefirstepidemic.com after the book title. You can find many of my articles archived there, not only on Lyme disease but on COVID as well, which I think maybe very enlightening to many people in terms of how this pandemic is being managed and in my view, very much mismanaged.

Mimi:
That’s true. Thank you so much for your time. This has been so informative. I really appreciate it.

Mary Beth:
Thank you, Mimi.

Mimi:
Each week, I will bring you different voices from the wellness community so that they can share how they help their clients heal. You will come away with tips and strategies to help you get your life back. Thank you so much for coming on and I’m so happy you are here. Subscribe now and tune in next week if you want to learn how I detox. And if you want to check out my detox for Lyme checklist, go to Lyme360.com/detoxchecklist. You can also join our community at Lyme 360 Warriors on Facebook and let’s heal together. Thank you. 

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