Wormser understands that many patients feel let down by practitioners who can’t provide definitive answers about their condition. “And I know people will turn to whoever says they think they can help—I can’t blame them for that,” he says. Nonetheless, “it is remarkable the difference that patients with real Lyme have, in terms of their experience with antibiotics, compared to people who probably don’t have Lyme but feel they do.”
Risky Business?
So, how should clinicians handle patient inquiries about Lyme disease treatment? ILADS President Cameron believes that all options should be presented. “The patient should be involved in the decision, rather than just offered only one answer,” he says, although he respects every clinician’s right to say, “There are other options, but I choose this one.”
Clinician Reviews Editorial Board member Julia Pallentino, MSN, JD, ARNP, sees patients in her gastroenterology practice in Tallahassee, Florida, who are being treated by other clinicians with long-term antibiotic therapy for Lyme disease. “I respect their right to seek care from where they wish to seek it, and if they feel it has been helpful, I support that,” she says. Even so, if she were the one treating them for Lyme disease, “I certainly would not take on a different way of treatment because they want it. I would say, ‘I understand that you think this will help you, and I certainly respect your opinion. However, that’s not the method I use. If you want to use a different method, then I would recommend you find a practitioner who does that.’”
Of course, in this day and age, the specter of malpractice hangs over everyone. “As an attorney, I can tell you I’d much rather my client had been using IDSA guidelines than ILADS,” Pallentino says. “If you treat a patient according to CDC guidelines [which are the IDSA guidelines, in this case], then it would be very difficult to say that you weren’t doing what was accepted, appropriate treatment.”
Savely understands all too well how risky treating Lyme disease can be. In 2004, she was voted Texas NP of the Year. Two years later, she says, her supervising physician was more or less intimidated by the medical board into terminating their collaborative agreement. Finding another supervising physician proved so difficult that she accepted an offer from an ILADS doctor to work with him, requiring her to relocate her practice to San Francisco. The changes impacted every area of her life—and yet, she persists in caring for Lyme disease patients according to the ILADS guidelines.
Why? “Somebody’s got to take care of these people,” she says. “Every time I have a patient saying ‘I cannot even tell you how grateful I am to you for listening to me when no one else would, and for treating me when nobody else would, and for letting me live again,’ I just go, ‘Gosh, I have to do this. I have to.’”
Whether other clinicians will feel they have to treat Lyme disease using one of the competing regimens is for them alone to decide.