Cure Unknown: Inside the Lyme Epidemic

How far would you go if your child became sick from a mystery infection? Science journalist and editor Pamela Weintraub’s quest for answers drove her to write Cure Unknown: Inside the Lyme Epidemic, one of the definitive books on Lyme disease. Ms. Weintraub discusses her book and the changing world of Lyme with her daughter-in-law and Project Lyme team member Davia Sills.

Project Lyme: Can you tell us a little bit about your background and what made you write Cure Unknown: Inside the Lyme Epidemic?

Pamela Weintraub: Well, I am a long-time science journalist with a very formal and rigorous training in science journalism. I was living with my family—we had moved to Chappaqua, which is a suburb in Westchester County, and it’s very beautiful there—and we all started getting sick. And my older son at a certain point started having such bad pains in his joints that he was not even able to walk up the stairs. He had a special key for the school elevator in middle school. He had prior to that a huge rash, which I now recognize to be an erythema migrans rash, but it wasn’t a bulls-eye. And when we went to the doctor, they said it wasn’t Lyme disease. They literally refused to test him for Lyme disease, though it turned out he had a textbook case.  

His symptoms became progressively worse. The doctors there at the Mount Kisco Medical Group, which was the largest medical group in Northern Westchester, insisted it was psychological. Eventually I actually did take him to a psychologist. And this psychologist, who is a very renowned psychologist, got so angry. He called up the pediatrician and screamed at him. He said, “This child is sick. You have to test him for something. This is not a psychological disease.” And so they did draw 14 vials of blood, and they did find that he was so positive for Lyme disease that every band on his Western blot was lit up. It was like a Christmas tree. And that’s very unusual for Lyme patients, you know; most Lyme patients don’t have every single band, like 10 of 10 bands on their Western blot glaring, but he did. He was really sick, and he was treated at the time with what was considered the most aggressive treatment by the mainstream: Rocephin. Rocephin was an IV antibiotic, and he had it for four weeks, and then he had it for eight weeks. 

And then when he was still sick (in fact sicker than before), the infectious diseases doctor at the local hospital, who had conceded he’d been misdiagnosed for two years, pivoted and said if he wasn’t better, it was no longer Lyme disease. I had really entered The Twilight Zone. I could hear the music playing. And that started me on my journey as a science journalist, and as a mother first of all. I was really just a mother trying to figure out what was the matter. And my oldest son was not the only one who was sick. We were all sick; we just weren’t as sick as him. I was very sick, and I tried to solve the problem for my family. And then I began to realize that we were not alone. We were part of a legion of people that had been misled and abused and dismissed by this medical sleight of hand, and allowed to languish as if we had just disappeared.

But I slowly began to meet all these other people in Northern Westchester, in the suburbs of New Jersey and Connecticut, out on Long Island, who were in a very similar situation. And these were a huge number of people. And so that’s how I decided to research this book. In fact, I couldn’t even believe that nobody had done it before. But after I finished doing it, I understood why nobody had done it before: because it was a very dark territory, it was very controversial territory, and it was difficult territory. And the only person who would be motivated to do it would be somebody who had been abused by the situation. That would be the only person who could believe this would happen. And yet, you also needed to have the skills of a science journalist—and by the way, not just the skills of a science journalist, but the skills of a science journalist whose brain and energy was intact, which Lyme disease often prevents. So I guess that’s why nobody had done this kind of investigative book before.

Project Lyme: Can you tell us one of the greatest takeaways that you would want the people reading your book to absorb?

Pamela Weintraub: I would want them to understand that this is a nuanced and complicated terrain. It is constantly changing. And of course my book hasn’t been updated in a number of years, but I think that my book really tells the history of the patient’s story. And it tells that history going way back to the very beginning. And I think probably, aside from Polly Murray’s book, of course, which, because she was the first patient, basically tells the story of the very first patients. But my book really does take it from there and explain what has happened to those generations of patients in the form of a history. 

So, people who read my book can begin to understand how the politics of medicine and the economies of medicine and the conflicts in medicine have conspired to leave so many patients out in the cold. Cure Unknown explains how a disease can be constructed in a social way—how a disease can be created by its definition and not necessarily always from the ground-up, from the biology of the disease, but from the top-down, from the economics and the social cost and the needs of scientific careers. There accrues great benefit to those who originally defined the disease; if they’ve defined it incorrectly, they really want to defend their own turf. Those who read my book can understand what they are really dealing with and, thus, may gain the courage to question everything that they’re told and to think things through for themselves, if they can. Because the information is out there. It’s nuanced information. 

Project Lyme: Very interesting. And the world of Lyme disease continues to change. So what advice would you have for the Lyme patient today?

Pamela Weintraub: I would say that the science I described in my book has evolved, but surprisingly, the political world of Lyme disease—the problems that patients face when they first get Lyme disease and then are told they don’t have it and then don’t get treatment for years—that really hasn’t changed. It’s shocking and it’s very sad that after everything we know and the pain and experience of so many patients who have come before, we still continue to create generation upon generation of new chronic Lyme patients. You’d think at least that part of it would get better—that if people move to the suburbs, they would at least know how to be on the lookout for a tick bite and know the consequences of getting treated late. They would at least be on the lookout for the symptoms of Lyme disease. They would know a rash doesn’t need to be a Bull’s-eye and that early symptoms can present like the flu. But the old, bad information that Lyme disease is hard to catch and easy to treat, those myths are pervasive. They’re as pervasive today as they were then, sadly. And so people still get caught between the cracks of the indisputable, uncontroversial reality and the trivializing of the disease still in the ether; and when they get caught in that space, they can find themselves left out in the cold.

And of course, who wants to think about a disease? Most people don’t really want to think about it. So they’re still caught in this web. When they are, they can be validated by ever more sobering statistics because almost 500,000 people a year, according to the CDC, are diagnosed with Lyme disease. And I might add that the socially constructed, CDC definition of Lyme disease is just the tip of the iceberg that includes people who fail the flawed Lyme test and  those with other forms of tick-borne disease: Not just Borrelia burgdorferi sensu stricto, but the various other genospecies of borrelia that may make people sick along with malaria-like babesia, anaplasma, the relapsing fevers and viruses—including infections we have not yet isolated. There are alpha-gal meat allergies and on and on, so be careful out there. 

So I would say that yes, you’re more validated now than in the past when you finally realize you’re in this group; you’re more validated by these big numbers and by the admission of the CDC that you can get Lyme in any state in the country, a new concession. Even though they claim it’s rare to get it in some places, at least they admit that you can. So there’s that, and there is ongoing research at various universities, like, for example, Johns Hopkins, where emerging treatments focused on the more enduring symptoms are being conducted. There’s far more hope for the future, but I think that people actually, unfortunately, sadly, are similarly screwed where early diagnosis and early treatment are concerned.

Project Lyme: It seems like there are two types of patients: the “textbook” Lyme cases—and everybody else.

Pamela Weintraub: Many of the textbook patients have been diagnosed early. Often, the divisions are between those diagnosed on time and treated early, and those who are allowed to slip through the cracks of this very flawed and rigid disease definition—this politically constructed disease definition—and allowed to get very, very sick. And obviously, if you have an infection for a long time that’s never been treated, it’s going to be much more difficult to find the road back from that.

My son was a textbook patient from the start of his illness. He had every positive band. He lived in the epicenter of Lyme. He played in the woods with ticks and deer, and he had a huge erythema migrans rash, sore joints, classic symptoms of the disease. And yet even he slipped through the cracks.

Project Lyme: Why would someone with all the symptoms of Lyme disease have so much trouble getting diagnosed properly?

Pamela Weintraub: There was such a pushback against diagnosing this disease back then, and often still is. Perhaps the realities of COVID will help to turn things around. You can see that a lot of the things that are playing out now with COVID have happened to the Lyme patients for decades: the false negative tests, the long-haul symptoms, the continual misinformation, continual denial that a patient’s experience is real.

But because COVID is aerosolized and has killed so many in such a short time, it’s gotten far more respect. I hope some of that respect can trickle down to us.

Project Lyme: You approached Cure Unknown as a science journalist, but also as a parent, as a mother. Do you have any advice for parents caring for a child sick from Lyme disease?

Pamela Weintraub: Yes, I would say that you should listen to your heart and that you should follow your instinct. If you have a child like mine, a healthy, brilliant, athletic, accomplished child, who suddenly falls off a cliff and your instinct tells you they are sick, pursue the answer. You must move beyond the practitioners dismissing your child and your concerns, and speak to other patients who may have other avenues to suggest. Patients are authorities in their own disease. Now you can’t believe everything that every patient says; there’s a lot of lunacy out there. But the patient community in aggregate has a lot of wisdom. Never stop until you learn why your child is sick so you can help them get well.   

Project Lyme: Thank you for taking the time to speak with us.

Check out Cure Unknown now to learn more about the ever-shifting landscape of Lyme disease and the patient community in the book.