Samuel Shor, MD, FACP: Moving from the NIH to the CDC, the CDC published in its MMWR within the last couple of weeks, that’s Morbidity Mortality Weekly Review, which goes over a myriad of topics. This particular paper by Marzec described 5 individuals who had severe complications from IV antibiotics. There were major problems with it, and I published, in the PubMed comments, a retort to this article. There were several concerns. One is they cherry-picked people who were clearly adversely impacted, which is a shame whenever that happens with well-intentioned treatment. But how about the thousands of people who have benefitted from treatments? They made 3 claims that I described in my response in the PubMed comments. One was that chronic Lyme disease doesn’t exist. We’ve already discussed some of the supportive evidence for which I believe persistence, both pretreatment and posttreatment. They also said the 2-tiered system is very sensitive. We’ve already discussed that. And then the third alludes to 2 out of the 4 NIH trials, where they said long-term antibiotics don’t work. Well, in fact, the Fallon et al study showed that there was statistically significant improvement in pain and functionality, and the Krupp [et al} study showed that there was persistent benefit to fatigue in those studies.
Leonard Sigal, MD: But the MMWR paper was never meant to be a statement about the likelihood of an adverse outcome. It was merely a statement that there can be.
Samuel Shor, MD, FACP: No, I don’t agree with you. They said, “Do not use long-term antibiotics. It’s dangerous.”
Leonard Sigal, MD: Yes, there are other studies that have demonstrated that antibiotics, IV or even oral, are not without consequences.
Samuel Shor, MD, FACP: Absolutely.
Leonard Sigal, MD: OK, that’s the entire point I want to make.
Samuel Shor, MD, FACP: The point you’re making is well taken, and part of this conclusion that I make is that you need to do a careful differential diagnosis, be proactive in probiotics and all the protective oversight that you need to do, and not use antibiotics unless you have to. But the take-home message that I, and many others, took from that MMWR piece was that long-term antibiotics don’t work: “You shouldn’t do it, period!”
Leonard Sigal, MD: And that’s an overbroad statement, I agree. When you’ve got a person who is not well, chronically not well, and very confused—and most of the times, at least in my experience, people who have chronic symptoms that have been resistant to everything that anybody has done for them are confused. They may be angry. Many, many feelings are going on. One of the problems that I’m concerned about, aside from antibiotic toxicity and the potential for Lyme sepsis in somebody who’s got a chronic indwelling catheter, is that first of all, by giving a diagnosis of chronic Lyme disease that has been refractory to antibiotics, you’re instilling a fear factor that I think is not really often discussed. If I have a disease that has not responded to anything that all of my doctors have given me, what is the future for me? That’s my first point after the MMWR piece. The second point that I’d like to make is that there are people who are diagnosed as having chronic Lyme disease who have something else. And regarding the people with rheumatoid arthritis following Lyme disease infection, those people did well on methotrexate, which is a drug used for rheumatoid arthritis.
Peter L. Salgo, MD: Before we go anymore, I want to put a button on a few things. I will give you another shot, I promise. The first thing is, can we say that some patients are experiencing something that goes on long after the initial infection, whatever that something is, and that needs to at least be acknowledged? Is that fair?
Leonard Sigal, MD: A unanimous yes.
Peter L. Salgo, MD: We’ve gotten to yes. That’s good. Number 2, there is, when you talk about a conspiracy—implicit and embedded in a conspiracy—some deeper malfeasance that somebody is gaining from something by doing something else. Please tell me, who’s gaining?
Patricia V. Smith: I need to address what Dr. Sigal said about the fear that patients have. I can safely say that, after 33 years of traversing this country and meeting with tens of thousands of Lyme patients and their families in every kind of setting—I’ve taken them into doctors’ appointments, I’ve had them in my home when they were sick, and so on and so forth—their greatest fear is not of having a diagnosis of chronic Lyme disease, but of not being able to have chronic Lyme as a diagnosis. Because, that prevents the physicians from treating them for the disease that they really have.
Peter L. Salgo, MD: But let’s go back to what I asked you. If there is a conspiracy, if there is a “them” out there that wants to prevent this being researched and being diagnosed and nailed down, who’s the “them,” and what are they gaining from it?
Patricia V. Smith: I can only say that when the Attorney General Blumenthal, in 2008, did an investigation into the IDSA guidelines, he uncovered at that time that there was a massive amount of undisclosed, vested interest among the creators of the guidelines. And so, that’s problematic because it implies that they have a vested interest. They get to define the disease, they get to select the test, to be involved with the test for the disease, they were involved with the vaccines, and many of them were involved as paid consultants to insurance companies going up against physicians who were treating our patients.
Peter L. Salgo, MD: Just before anything else, let me just nail it down. At the end of the day, what part of your argument is, is that the insurance company didn’t want to pay for long-term care: these men and women were in the pocket of the insurance companies, and they wanted to deny the existence so the insurance companies wouldn’t have to bail them out. Is that what you’re saying?
Patricia V. Smith: I didn’t say that. Don’t put words in my mouth.
Peter L. Salgo, MD: That’s what I’m asking.
Patricia V. Smith: I’m merely saying that there is a lot of vested interest involved in a disease that we don’t have enough research funds for. Dr. Sigal alluded to that earlier. We actually have $35 million being expended by the federal government on the disease, $25 million in NIH and $10 million for the CDC, and now we have the new government program—that’s another $5 million. That is it. So, we are not getting the research that is necessary. Other diseases are getting a lot of attention.
Peter L. Salgo, MD: Make it very brief because we have to nail a few more things.
Leonard Sigal, MD: One small thing. Having been on the receiving end of accusations like the ones that you 2 have just described, I find it very interesting that there is a frequent allegation that the work that is done in academic centers is somehow tainted, that we are somehow in the hip pocket of somebody or another, and that we’re doing it for nefarious reasons. I don’t recall anybody on the academic wing turning to you and to the ILADS, and to other organizations, and making accusations.
Patricia V. Smith: You’re kidding, right?
Leonard Sigal, MD: No, please let me finish. I don’t recall. It may have happened, but I can assure you that the people with whom I work don’t understand some of the things that are being said by the other school of thought. I’ve never heard anybody in my group say, “They’re frauds, they’re bums, and they’re somehow raking in profits.”
Patricia V. Smith: We’ve been trashed in peer review.
Leonard Sigal, MD: No, what I’m talking about is somehow being in the hip pocket of something or other. Somehow there’s a conspiracy on the other end. I’ve never heard that.
Samuel Shor, MD, FACP: I’ll give you a good example.
Leonard Sigal, MD: Please, enlighten me.
Samuel Shor, MD, FACP: It’s this concept of people who have evolved their interest in treating these chronic symptoms that we often characterize as chronic Lyme. I’ve had at least 2 papers rejected by the reviewers who have said that, “Well, you earn more than $10,000 a year in treating these people, therefore you’ve got a vested interest in it.”
Leonard Sigal, MD: That’s ridiculous.
Samuel Shor, MD, FACP: That’s what the IDSA is saying.
Leonard Sigal, MD: I know, but that’s ridiculous.
Samuel Shor, MD, FACP: But that’s an example.
Robert C. Bransfield, MD, DLFAPA: We’ve got to look at the corrupting influence, I think, of money, ego, and power, and then you can usually get the answer.
Peter L. Salgo, MD: Or follow the money.
Robert C. Bransfield, MD, DLFAPA: Yes.