The Lyme Controversy

The Infectious Disease Society of America (IDSA), the American Lyme Disease Foundation (ALDF), the National Institute of Allergy and Infectious Diseases (NIAID), and the Centers for Disease Control and Prevention (CDC) are largely in agreement concerning Lyme disease. The collective opinion: In its later stages, Lyme disease is easy to detect with laboratory tests and simple to treat with a 28-day course of antibiotics. [Update 05/25/2011: The CDC once went a bit further and said that some patients may benefit from a second course of antibiotics; that was the information originally given here when this blog entry was first posted. However, the web address and wording of the CDC's Lyme treatment information has changed since the time of my original writing.]

The IDSA says that Lyme disease that manifests without erythema migrans [the characteristic bull's-eye rash associated with Lyme] "is diagnosed based on the patient’s history and the doctor’s examination of the patient in conjunction with a positive laboratory test result." The CDC endorses the IDSA Lyme disease treatment guidelines, but breaks with the IDSA enough to say [Update 05/25/2011: Again, the following wording is no longer on the CDC site.] that "Lyme disease is diagnosed based on symptoms, objective physical findings (such as [my emphasis] erythema migrans, facial palsy, or arthritis [again, my emphasis]), and a history of possible exposure to infected ticks," and that its [Update 05/25/2011: And yet again, the following wording is no longer on the CDC site. In fact, all of the CDC's information about Lyme disease seems to have been rewritten since this blog was first posted. The new home page of its Lyme information is here. On that page, you'll see links to the new topic pages.] "surveillance case definition" of Lyme disease "was developed for national reporting of Lyme disease" and "is not intended to be used in clinical diagnosis."

The Columbia University Medical Center Lyme and Tick-Borne Diseases Research Center goes much further than either group and says that "the CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease."

Many insurance companies follow the IDSA treatment guidelines and will not pay for further testing if an initial Lyme laboratory test is negative. More important, they will not pay for long-term antibiotic treatment.

Some physicians' groups, most notably the International Lyme and Associated Diseases Society (ILADS), the Lyme Disease Association (LDA), and the Lyme Disease Foundation (LDF; created before the similar-sounding ALDF), adamantly disagree with the idea that laboratory testing is reliable and with the IDSA treatment guidelines. They maintain that current testing is extremely unreliable and far too restrictive, that longer courses of antibiotic treatment are often needed to combat Lyme, and that the research backing up both of these claims is routinely ignored by the IDSA.

Many patients continue to have symptoms, or have their symptoms return, after suspending even long-term antibiotic treatment. Those doctors and organizations who say a course or two of antibiotic treatment is sufficient say this could be the result of an autoimmune disorder caused by Lyme, an unrelated disorder entirely, or a reinfection of Lyme from another tick bite.

The attorney general of Connecticut, Richard Blumenthal, even opened an antitrust investigation into the IDSA, alleging that the board members who created the Lyme treatment guidelines had various conflicts of interest. In 2008, the IDSA agreed to purge the board of those members with possible conflicts of interests and to review its guidelines. It did hold a hearing on the matter earlier this year, and it says it "hopes to issue its final report by the end of the year." Links to testimony both supporting the IDSA guidelines and urging revision can be found on the IDSA website.

Barbara Johnson of the CDC, in her "Statement in Support of the Laboratory Testing Recommendations in the 2006 IDSA Clinical Practice Guidelines for Lyme Disease," said, "Serologic testing recommended by CDC since 1995 [2, 4] and endorsed by IDSA utilizes a two-tiered procedure that includes an initial ELISA and conditional immunoblotting to be performed if the ELISA result is positive or indeterminate." However, Barbara Johnson also holds patents for more than one Lyme-testing aid.

Should our government researchers be allowed to collaborate with big pharmaceutical companies for profit? It doesn't guarantee unethical behavior, of course, but it certainly could make engaging in it more tempting.

I am not a scientist and cannot possibly know what the absolutes of Lyme disease testing and treatment are, but I don't think we can discard the stories of thousands of Lyme patients who say they were helped by antibiotics only to relapse after their treatments ended. The IDSA would write many of these experiences off as the placebo effect:

Long-term therapy for so-called chronic Lyme disease can involve weeks, months and even years of intravenous antibiotics. Although some people may feel better, it doesn’t prove that the antibiotic cured or suppressed infection. Sometimes, the belief that a treatment is helping can be enough to make people feel better. This is called the placebo effect and it is a well-documented medical phenomenon. Antibiotics also have anti-inflammatory effects that may help alleviate certain symptoms. Or, in some cases, patients may have another infectious disease that is responsive to antibiotics.

It isn't uncommon for Lyme patients to go years before being diagnosed. During those years, they are often treated as though they are hypochondriacs. Is it really acceptable for the medical profession to again slap some of them with labels of "unbalanced" if they assert that their symptoms return when their antibiotic treatments end?

Spend any time trolling Lyme disease forums, however, and you'll soon see that patients themselves are sometimes hurting their own case. Many follow and actively promote unscientific and even unhealthy alternative therapies.

It's also clear that there are doctors out there who are quite willing to take advantage of desperate patients. Many doctors who advocate long-term antibiotic treatment for Lyme no longer deal with insurance, and most doctors who advocate long-term antibiotic treatment prefer to keep a low profile lest they be harassed by others in the medical community and overwhelmed by new patients. These are known as "Lyme-literate medical doctors," and most seem to truly care about patient health. However, there are those who seem only too happy to make huge profits from people who never show even initial signs of improvement from antibiotic therapy. LymeNet is full of posters with such stories to tell, posters who, disturbingly, are so relieved to have someone validate their experiences that they don't question their treatment protocols.*

My plan? I'm going to ask to be tested for Lyme again using a more sensitive test; I'll also ask my doctor to consider a strictly clinical diagnosis if my tests are again negative. (The symptoms of chronic fatigue syndrome and Lyme disease are identical. One has a treatement regimen and the other doesn't; the choice is really a no-brainer.) I'll also ask to be tested for tick-borne co-infections.

If my doctor is open minded and willing to allow me to try a treatment regimen, I'll try the 28 days of antibiotics. If I feel well after the course of treatment and continue to feel well, great. If my symptoms come back, I will ask my doctor to prescribe further antibiotics off label. If he refuses, I'll find a new doctor. It's really that simple. If something helps, I should have access to it. [Update: My doctor was perfectly willing to order more-specific Lyme tests and did so. Unfortunately, even though I am willing to pay out of pocket for the testing, the laboratory his office uses flatly refuses to run them unless the less-accurate enzyme-linked immunosorbent assay (ELISA) screening test is positive.]

*Although I have tried to offer reliable examples throughout this posting, it is impossible to do so when discussing Lyme-literate physicians and their methods and motives, because the Lyme community is fiercely protective of its doctors. There are only two ways to get the names of Lyme-literate doctors: 1) through a body such as the LDA or the LDF, and 2) through a patient group. In both situations, physician names are communicated directly to seekers and are not made available publicly. The only real way to get a sense of what is happening is to spend a great deal of time reading forum postings.