Lyme Lessons | Medical | Hudson Valley | Chronogram Magazine
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Lyme Lessons 

  • Annie Internicola

When Dr. Richard Horowitz talks about Lyme disease, the words come tumbling out with a fiery urgency. It's an urgency pent up from 25 years of working in the trenches with chronically ill people suffering from a dizzying array of symptoms. A practice in Hyde Park, in the heart of New York deer-tick country, gives Horowitz what he calls a "bull's-eye view" of an epidemic. He's the doc that "The Today Show" calls when they need an expert to expound on Lyme—and the one that the weak and the pain-wracked come to find when they can't get relief anywhere else. Here, Horowitz talks about his new book, Why Can't I Get Better: Solving the Mystery of Lyme & Chronic Disease (St. Martin's, 2013)—and lessons gleaned from treating over 12,000 patients to date.

How did your work with Lyme disease patients turn into a book about treating not just Lyme, but also all manner of chronic illnesses?
What people need to realize first is that Lyme is the number one spreading vector-borne epidemic worldwide. I estimate that we have two or three million cases per year in the United States, and that number is going to keep growing. But it's not just a local disease—it's global. In China, they say that 6 percent of the population has Lyme disease: That's 78 million people [with Lyme] on the other side of the world. Next, we need to recognize that Lyme is a disease on its own, but it's also mimicking a host of other diseases. The majority of people who come to see me who've not had a diagnosis of Lyme have been diagnosed with chronic fatigue syndrome, fibromyalgia, early dementia, or autoimmune diseases like rheumatoid arthritis, lupus, and multiple sclerosis, with Lyme at the base of why they're sick. Lyme is the great imitator of all these chronic diseases. People might be surprised to learn that 75 percent of our health-care costs and deaths in the United States are due to chronic disease—but our health-care system doesn't have a chronic disease model. I'm presenting one with this book.

There's a lot of controversy in the medical field today over whether or not Lyme is a chronic disease.
The medical establishment is now debating: Is Lyme a persistent infection or not? Several recent studies suggest that it can be persistent—and my own clinical experience confirms that finding. Yet with any new disease, there's always going to be controversy. Right now with Lyme it's two groups of doctors—those with the Infectious Diseases Society of America (IDSA) and those with the International Lyme and Associated Diseases Society (ILADS). IDSA says that the blood tests for Lyme are reliable and that it's easy to diagnose, easy to cure. ILADS, of which I am a founding member, says the tests are not reliable, and it's not easy to cure—and not just because of Lyme disease but because of all these other tick-borne infections that are also getting into the body. The patients who come to see me haven't just been infected by Borrelia burgdorferi, the spirochetal bacteria that causes Lyme. They've often been infected as well by co-infections that can be bacterial, viral, or parasitic. When Lyme gets together with these other co-infections, it behaves very differently. So rather than "chronic Lyme," I prefer to use the term MSIDS—or Multiple Systemic Infectious Disease Syndrome. For Lyme patients with chronic symptoms, "Lyme-MSIDS" is more appropriate, because it's not always just Lyme that is causing these symptoms.

If Lyme is the great imitator, mimicking dozens of other disease pathways, then how do you know you have Lyme and not something else?
There's a constellation of symptoms that you see very often with Lyme disease: fatigue, stiff neck, headache, joint pain, nerve symptoms like tingling or numbness, sleep problems, memory problems or brain fog, and mood disorders like depression and anxiety. You might see cardiac symptoms like chest pain and rapid palpitations. In kids it's known to cause gastrointestinal symptoms, mood disorders, problems in school like attention deficit disorder (ADD), and cognitive difficulties. A host of people will get neurological symptoms like dizziness, light sensitivity, sound sensitivity. It causes every psychiatric manifestation you can imagine, including schizophrenia, obsessive compulsive disorder, Turret's syndrome, depression, anxiety—all of these have been described in the medical literature by Lyme disease.

Misdiagnoses happen, but there are certain signs that it's Lyme. One sign is that you'll have good and bad days—the symptoms will come and go. Also, you can get symptoms that migrate around the body—the muscle pain and joint pain. We don't usually see migratory joint pain with chronic fatigue, fibromyalgia, and rheumatoid arthritis. The third point is that you may have nerve symptoms like tingling, numbness, or burning that tend to come and go, or move around the body. In women, symptoms will get worse around their menstrual cycle. Another sign is that when you take antibiotics the symptoms go away, but then the symptoms come back when the antibiotics are over. Or vice versa: You get worse on the antibiotics as the spirochetes are dying off. These are the classic signs. The last point is, you've done a blood test, and if you have any one of five bands on the Western blot, then bingo! You've been exposed to Lyme. People look for the bull's-eye rash, or erythema migrans (EM) rash, but half of the people don't get a rash at all, and sometimes the rash doesn't look like a bull's-eye. Maybe 15 percent of people get a bull's-eye rash.

Can you talk about some of the other tick-borne co-infections that many of us are getting—perhaps without even knowing?
The big ones are babesia, ehrlichia, anaplasma, and bartonella. Many Lyme patients may also have parasites—and if you have babesiosis, which is caused by a malaria-type organism called babesia, it affects your immune system's ability to get rid of parasites. If someone comes into my office and says, "I've got day sweats, night sweats, fever, chills," it may be babesia. Over 80 percent of the time with babesia, Lyme and babesia are transmitted together. If you have Lyme and babesia, you're much sicker. Your fatigue, memory problems, and joint pains are much worse. Babesia is not treated with antibiotics—it's treated with antiparasitic drugs. Or if you have nerve pain, neuropathy, with tingling and burning, then it could be due to Lyme, or it could be due to bartonella, which can make nerve pain worse. There's also a new infection called Borrelia miyamotoi—it's the relapsing-fever borrelia. You can get a bull's-eye rash due to this other strain, but your Lyme test will come back negative. They're finding 10 to 20 percent of the ticks in the Northeast are containing Borrelia miyamotoi, and the number is growing. If you think Lyme is a bad epidemic, wait until you see what's about to happen in the next 10 years with Borrelia miyamotoi.

You suggest in your book that with Lyme-MSIDS, as well as other chronic diseases, there's not just one cause but many factors that go into it. Can you explain?
Unfortunately in medical school we learned Pasteur's postulate—that there's one cause for one disease—but that was the 1800s. Now we have all these different infections and toxins getting into people's bodies. We have 300 to 500 environmental toxins getting into people's bodies every day. There are heavy metals like lead, mercury, and arsenic, which can cause symptoms like nerve pain. People are dealing with inflammation, difficulties with sleep, hormones thrown off, and low adrenal function, which isn't going to help them get better. So my personal belief is that we need to look at prevention models that are going to be very different from what we're doing now in medicine. We need to look at chronic infections, toxins, inflammation, and bacteria in the gut—the microbiome.

I believe that in years to come we're going to find that many of the chronic diseases we're now labeling, like Alzheimer's and autism, may in fact end up being Lyme-MSIDS. Researchers have already found borrelian spirochetes in the brains of people with Alzheimer's. In France, doctors are finding that autistic kids have Lyme and other infections that are responding to antibiotics. These kids' autistic symptoms are going away with antibiotics! There's a lot that we don't know, but I think infections and toxins are not being adequately looked at as some of the factors that are causing diseases like dementia, Parkinson's disease, and ADHD [attention deficit hyperactivity disorder]. A lot of literature now shows that environmental toxins and infections can cause many of these types of symptoms.

You say that you've come up with a solution to treating Lyme and other chronic illnesses with the 16-point MSIDS model that you present in your book. Can you talk about that?
I created the 16-point MSIDS model to help people, with their doctor, to become their own medical detective. It's a multifactorial model that looks at many overlapping causes for why people remain ill. The model comes out of my integrative approach to medicine, meaning that I use both classical regimens, including antibiotics, and also a lot of natural regimens, including herbs, diet, and detoxification pathways. Even if you don't have Lyme disease but you have fibromyalgia or MS or chronic fatigue, you might still have heavy metals or toxins in the body. You might still have problems with detoxifying chemicals from the environment, or problems with inflammation or falling asleep. In order to get better, you have to look at the entire picture of healing the body from infections, toxins, and other factors. It's like having 16 nails in your foot—you're not going to get better by pulling out just one nail. You have to pull out all 16.

I believe the MSIDS model is going to be a road map for people with chronic diseases who are not getting better with standard medical therapy. I'm creating an MSIDS app right now for people to use the 16-point model to figure out why they're ill and how they can get better. And then I believe we need to open up centers for chronic disease—I call them Chronic Disease Centers of Excellence—which I will hopefully be opening up in the next few years. We need to get to the source of the problems if we're going to be dealing with these epidemics of chronic diseases that are now affecting the 21st century. We're looking at epidemics of autism, Alzheimer's, cancer, Lyme disease. The incidence of Alzheimer's is expected to triple in the next 30 years; it's going to break the health-care bank. To have guidelines that say "we don't know what's wrong with you," as we have today with Lyme disease in our health-care system—that's unacceptable. We can do better than that.

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