With 300,000 new cases of Lyme disease in the U.S. each year, it's no surprise that the tick-borne illness has been a hotly debated topic among medical experts.
Dr. Manny recently sat down with New York Times best selling author of “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease” to sort out the facts.
Q: Why is [Lyme disease] a chronic disease? How is it evolving in this country?
A: The problem is that ticks are now coming out even three weeks earlier with these global warming changes. So we have patients now coming in with tick bites, people are moving into urban areas, they're getting these bites, the nymphs are very small, you may not see them … the ticks are containing not just Lyme disease, but other bacteria [including] parasites like babesia, which is a malaria-like illness. So with one tick bite, you can get multiple organisms all at the same time, and many people get chronically ill from this.
Q: If you suspect that the patient has Lyme disease, what test do you do in order to make the proper diagnosis?
A: Well first of all, Lyme is a clinical diagnosis. The CDC even said years ago that the testing should only be used by health departments to epidemiologically screen large populations. So the first test that doctors do usually is an ELISA test. The problem with the ELISA is it lacks sensitivity, it's like a coin flip, you'll pick it up in half the cases … there are over 100 types of Lyme in the United States and 300 worldwide.
The Western Blot — the second test that people do — it won't always pick it up. So I play a game with my patients called Lyme bingo, which is you look at the Western Blot, and if there are five numbers or bands on the Western Blot, any one of these means you've been exposed to Lyme. So the 23, 31,34,39 and 83/93 bands — these are specific for Lyme.
Q: The clinical presentation of Lyme disease can mimic many other things like arthritis, fibromyalgia, things of this sort. So how do you decipher that?
A: Lyme is known as "The Great Imitator." And it's true, it's very difficult for doctors sometimes to make the diagnosis because as you said, it imitates chronic fatigue syndrome, fibromyalgia, autoimmune diseases like MS (multiple sclerosis). I have a lot of MS patients coming in [who] have Lyme. It can mimic arthritis, ALS, psychiatric [disorders]. I've had patients with anxiety, depression, OCD, schizophrenia … I give them doxycycline and they get off their [psychiatric medications].
Q: So the treatment is with antibiotics. For how long?
A: It depends on the patient. If they go past 30 days, it's not easy to cure this disease. Seventy-five to 80 percent can be cured with antibiotics like doxycycline or ceftin, within the first 30 days. The problem is where people go past 30 days and they get this multi-systemic disorder where they're tired, and they have these migrating aches and pains that are moving around their body; tingling, numbness, burning that comes and goes and moves around; memory, concentration problems — you walk into a room and can't remember why; you can't fall asleep, you keep waking up; day sweats, night sweats and chills; you're tired, have a stiff neck, a headache — all of these symptoms can be symptoms of Lyme, but they also can be from babesia, from other co-infections.
Q: So say I get exposed to Lyme disease and I don't realize it, time goes by, now it's a year later … can I get better?
A: Yes, you can. There is hope for people with chronic Lyme. I've found that there's up to 16 reasons why people stay ill with Lyme. One of the largest parts are these co-infections in the ticks like babesia. Over 80 percent of the time, this malarial organism — it's a parasite — it's getting into people, making them sick … the [patients] who have day sweats, night sweats, chills. I had a woman in a wheelchair for six years paralyzed from the waist down ... within 10 days of treating the babesia with antibiotics and antimalarial [drugs], she was walking.
Q: In the medical community ... there is a lot of controversy in the sense that some experts don't believe in chronic Lyme disease. Why?
A: There are two sets of guidelines for diagnosing and treating Lyme. One is by the Infectious Disease Society of America (IDSA) and the other is by ILADS — and I was one of the founding members of ILADS, the International Lyme and Associated Disease Society.
These two guidelines are different. One says the tests are reliable and you can cure it with 30 days, and the other guidelines say you can't. Right now, the IDSA are redoing their guidelines. The Lyme groups have sent extensive scientific references to the IDSA on how poor the testing is and that Lyme can exist … the controversy, the politics of Lyme now that [are] really interfering with doctors knowing what to do, but we really need to put our swords aside, because we're in the middle of an epidemic. This is the No. 1 vector-borne spreading epidemic in the U.S.
Q: What is it that's creating the epidemic?
A: It's because of the deer, but also the white-footed mouse, chipmunks, raccoons, foxes, moles, voles, the ticks are now even on birds. The reason it's a worldwide epidemic is the ticks get on birds and they go to Canada, they go to China. When I was in China and I was speaking with their CDC ... they told me privately 6 percent of the Chinese population had been diagnosed with Lyme.
You need to do prevention because one of the viruses we're now finding, the Powassan virus can get into your body within 15 minutes of a tick bite, and the mortality rates are 10 to 15 percent — up to 30 percent in some studies. So you could get multiple viruses … relapsing fever bacteria, a malarial organism like babesia, with one tick bite. It overwhelms the immune system and that's one of the reasons people don't get better.
Q: Now summer's coming, people are going to be outside … what should we tell them to do?
A: It's important to do tick checks, wear light-colored clothing, you can spray permethrin spray … it will repel the ticks for one to two weeks. You can use DEET 20 percent or higher if you're in a really highly endemic area, but you have to be careful because of the neurotoxicity. Do tick checks when you come inside. Check all around the body, use tweezers or other tick removal devices to get underneath and pull it. You do not squeeze them because you will get the organisms into your skin.
Q: If I find a tick on my body and I take it off, what do I do?
A: It's good to send the ticks to the health departments to check the ticks to see if they have Lyme. You can put it in a little vial and send it out. Most of the health departments will do this. But you can't always wait for a rash because less than half of the people get rashes and 25 percent don’t even look like bull’s-eyes.
You must know the symptoms of Lyme disease and what to do, but if the tick has been on and it starts to get engorged ... and it's been difficult to remove, you may want to speak to your doctor about taking antibiotics. I've seen over 12,000 people with this disease over 28 years, and prevention and treating early with antibiotics can cure the disease.