Challenges in the Treatment of Lyme
An interview with Dr. Raphael Stricker.
Lyme disease is a growing epidemic, and the CDC now admits that numbers of new cases annually could be tenfold the 24,000 cases they report. Are medical doctors prepared to respond to Lyme as an epidemic?
I think they're very ill-prepared to respond. I think there is a lot of ignorance about Lyme Disease around the country, and even in areas where traditionally it's been epidemic, a lot of physicians really don't understand the disease. And unfortunately, that's because of several factors. One is the under-reporting by the CDC, which as you said is about tenfold less than the true number. Probably even lower than that, if you go by statistics from other parts of country. It may be as much as forty-fold less than the actual number of Lyme cases.
The other problem is the guidelines of the IDSA which are extremely narrow and restrict the diagnosis to a very narrow group of patients and exclude the vast majority of patients who have a more chronic form of the disease. Those are two of the main issues that we face that are big problems.
The ILADS treatment guidelines suggest more aggressive treatment for people with Lyme, saying some patients should be given longer or repeat antibiotics for recurrence of infection. What is the argument against long-term use of antibiotics, and how do you respond to critics of long-term use?
The argument is, (a) it's "unnecessary, because Lyme disease is 'hard to catch and easy to cure,'" to paraphrase Gina Kolata's famous statement from the New York Times, which was based on the IDSA philosophy. And because if it's so easy to cure, what's the point of giving long-term antibiotics?
And then the other argument says, well long-term antibiotics is very, very dangerous. Because if you do that, gee, you could kill your patient. And yet, if you look at the IDSA guidelines for other diseases, such as Tuburculosis, Leprosy, Actinomycosis, Atypical mycobacteria, they're quite willing to treat patients for up to three years with antibiotics. And in those situations, and those are very serious diseases, it's perfectly okay.
So, there is kind of a double standard that the IDSA has, and I think the problem is, again, they just don't consider Lyme as a serious illness. It's 'a trivial illness that requires very short treatment.' And that's a big problem.
Remember President Bush's brush with Lyme disease last summer? The public has a perception that Lyme is hard to catch and easy to treat. Very high profile people who are diagnosed and then said to be treated and pronounced Lyme-free. That kind of case tends to exacerbate the problem of patients who are still struggling with Lyme.
There are numerous testimonials about the severity of this disease. There are pages and pages and pages of newspaper and magazine articles, all kinds of publications that show how serious this disease can be. So, I think the public has that information there. It's been published. But as long as our leaders in the infectious disease field keep saying 'that's not true, that's not the way it is, that's not accurate,' I don't think much is going to change. The government, in the form of the CDC, keeps going by what the infectious disease people say. They don't really care about anything else.
I guess there is one other possibility. I call it the Rock Hudson Syndrome. If somebody really, really famous got chronic Lyme disease, maybe that would change the perception, the way that Rock Hudson's AIDS changed the perception of that disease back in the 1980s.
The problem with Lyme disease, and it's funny to think of it as a problem, is that it's really not a fatal illness. It just makes you completely disabled and miserable. But generally it doesn't kill you. And the problem with that is, that once people do get diagnosed and treated, they get better. And it's kind of like, 'hey, we're outta here, we don't want to look back.' And there have only been a handful of people, such as Amy Tan, to her great credit, who have spoken out about Lyme after really getting significantly better.
So I think that's really the problem, that you have this perception that famous people who get the disease are cured. We don't really know the full story of President Bush, I'll be very curious to hear the details of his illness, once he gets out of office. I don't think he's going to release that before then, but it will be quite interesting to hear.
Ginger Savely says her approach to treatment must be from two angles, and probably most Lyme specialists agree: First, detoxify by killing the Borrelia bacteria with antibiotics. Second, boost the body's immune system. But aren't antibiotics immuno-suppressants?
Some of them are, but they really don't do that much to the immune system of a healthy person. Certainly in some situations, like in AIDS, they can be immuno-suppressive. But generally, the immuno-suppressive effect is far less than the effect on getting rid of the infection that also causes a lot of problems. So, I think it's a trade-off. Any treatment in medicine is a trade-off, you've got the benefits vs. the risks. I think in terms of treating Lyme disease, the benefits of antibiotics far outweigh the risks.
Yes, definitely. As Ginger says, you don't think you can actually kill off all the bacteria, but if you continue to treat, that you can get the bacteria back to a place where the body can be strong enough to deal with it. This is the kind of place where Amy Tan is with the disease. It's really good for people to feel better after being miserable for so long, and people don't want to talk about it.
That's absolutely true. It's debatable whether you can eradicate all of the bacteria, or not. No one's ever really done a study to prove that. You could argue that with months of treatment you could get rid of all the infection that's there, but it's very difficult to prove that.
In fact, the latest studies that have been done in mice by Dr. Barthold up in University of California at Davis have sort of suggested the opposite. That there is a population that can survive the antibiotic treatment. And even though that population may not be as infectious as an original population, it still can cause a lot of the symptoms that are associated with chronic Lyme disease. I think we're seeing more and more of that kind of study.
And certainly, we know from experience, from years and years and thousands of patients, that when you do treat patients long-term with antibiotics, who have chronic Lyme disease, they get better. And whether they get better because you're completely getting rid of the bacteria is still something that we should spend a lot of money looking at -- which we haven't.
Could you talk about the pros and cons of the available Lyme tests, such as the Western Blot, and the ELISA?
Well, that's one of the other problems with Lyme disease. The commercial testing that's available is, in a word, terrible. It has 'coin toss sensitivity,' which means if you flip a coin you get the same results as doing a commercial test.
And these are the FDA-approved tests that are always being touted by the ISDA. And the only reason that FDA approval is needed for those tests is in order to make money off them, to market them commercially. And that's what people don't understand. They think that somehow FDA approval means that the test is better, but it's really not true. The only reason to get FDA approval for a test is if you want to make money off it.
So, in contrast to these really lousy commercial tests, there are some labs that specialize in testing for Lyme disease that do much better tests, that are much more sensitive. And unfortunately, those labs have been bashed by the IDSA as being inaccurate. And that's another problem that we have with making the diagnosis, because if you have someone who is chronically ill and you do a test that misses half the cases, chances are, you're not going to make a diagnoses and the person is not going to get treated.
And if you want to compare it to something, the current AIDS test has a 99.5% sensitivity, which means it misses one in two hundred AIDS cases. So, compare one out of every two Lyme cases that are missed? One in two hundred AIDS cases. I mean, that's a pretty big difference. What we need in Lyme disease is a test like the AIDS test, that is that sensitive, and that accurate.
Do you know of any studies going on right now to develop such a test?
I know of a lot of studies that have been done, I don't know of any that are successful. I think we're kind of stuck in a certain mentality for how to test for Lyme which is wrong, and which needs to change. And then the other problem is that the commercial tests that are approved, are making lots of money for the people who have the patents on them. In order to change those tests it would cost billions of dollars, so there's really no incentive to do that. As long as people can get away with saying that these are accurate tests, why should we change them? And I think that again, you're sort of getting into the politics of it, but that's the problem.
So you're saying there's a difference in laboratories where the tests are conducted. How much influence does a patient have in getting his or her blood tested at a laboratory that is said to be trustworthy for testing Lyme?
Generally, very little, unless they're very well informed, which is not the case usually when patients start out. They go to their doctor and the doctor says, 'I'm going to do a Lyme test to rule that out.' And he sends it to the regular, commercial lab that does the regular, commercial test.
So unless the patient is already very well-educated and knows that these tests are not accurate, and insists on having it tested at a lab that does a good job, chances are they're going to get a negative test.
And I would say that about 90% of patients who I see, where somebody has thought of Lyme disease, come to me with that kind of a test that's negative. Or, that actually has some positivity, but not enough to be considered a true positive test by the commercial standards. And that's a big problem. So then their doctor says, see, this commercial test, this insensitive commercial test was negative. So, therefore, you don't have Lyme disease.
So, then, those patients are treated with some other disorder, or they're told that it's all in their head.
Either, right, they're told 'it's all in your head,' or they're sent from doctor to doctor.
I did a study a few years ago where the average number of doctors the patient had seen was nine, or eleven or something. They go from doctor to doctor and they all scratch their head and say 'gee, I don't know what this is, it can't be this, it can't be that, we've done the million dollar workup.' They've had tests that I've never even heard of, and they're still sick, and nobody knows what's wrong with them. It's a huge mystery. It's a big, big mystery.
And you know, you do one decent Lyme test, and listen to the patient's symptoms, and get the history, and you can figure it out, usually.
Would you agree with Dr. Lee Cowden, who believes that many diseases, including heart conditions and even Alzheimer's, can be traced to the Lyme bacteria, at least as part of the problem.
Well, let me say, Dr. Cowden is a very intelligent guy. I don't agree with his approach to treating Lyme disease, but I think that he's probably correct. Because there are a lot of diseases in medicine that come on later in life, where we say we don't really know what causes that. It may have been some virus, or something like that.
And it's certainly possible that chronic, untreated Lyme disease could be at the root of a lot of those illnesses, like Dr. Cowden says. And probably there is this big reservoir of people who've been infected with the Lyme bacteria and who have never been treated, but their immune systems have managed to keep the disease in check. And eventually, when they run into some stress, or some other medical problem, that kind of unleashes the disease to cause other problems. And that's certainly a very interesting model of chronic infection or infection in older people.
Right. One more thing I'd like to ask you, and that about prevention. As we all know, prevention is said to be the best medicine. A lot of people are told to use DEET as protection against ticks when outdoors. But is there a less toxic alternative? A lot of Lyme patients have skin involvement, and their skin may be too sensitive to put DEET on, and of course it's not something that parents like to do for their little kids. Is there an alternative that's just as good? Or is DEET the way to go?
DEET is certainly one of the two main ways to protect yourself against ticks. The other one being, putting permethrin on your clothes. There is a line of clothing that's impregnated with permethrin. It's called Buzz-off, I believe. Although I think there are others, as well. But that would be the alternative to putting DEET on your skin. Now, permethrin isn't really a walk in the park either, it has some toxicity, but that is an alternative. You don't want to put something on your skin that is fairly toxic.
Unfortunately, there aren't really a lot of alternatives. There is a newer compound I was just reading about, an eicosanoic acid-based product. Again, I don't know too much about that. But we certainly have a lot of room for improvement in tick prevention and the prevention of Lyme disease.
What about other means of contracting Lyme? I've talked to several specialists who believe that aside from vertical transmission, which has been proven scientifically, just as the AIDS virus is passed on to pass the bacteria, there may be other means. Are there other means that concern you or your patients?
Person-to-person transmission is obviously a concern. I certainly have a number of couples who both have the infection, even though only one has a good history for tick exposure. So, you really do have to wonder about person-to-person transmission. And it's not really sexual transmission, it may just be intimate contact, or through saliva.
There is a model for that, there's a mouse model. But of course, then again, the Centers for Disease Control and Prevention say that never happens, it's not a problem, it's nothing we should worry about. They also say that vertical transmission doesn't occur. So, as long as our government is telling us not to worry about this, it's kind of hard to get people to worry about it. Until they're in the position where they have the disease, and their loved ones are kind of worried about it.
But I think we need to do a lot more research on that issue. I think that it's an open issue, I think there's really very little research that's been done, compared to other diseases. I think we just need to do more work on that.
Yes. Thank you so much for all the work you do with Lyme patients. And especially in California, for those whose infectious disease doctors have told them that Lyme doesn't exist there.
We're trying to change that perception.