Dr. Allen Steere and Dr. Gary Wormser did not respond to outreach. Below are the responses from the doctors we did hear back from.

Dr. Phillip J. Baker:

TQE Outreach:

With regards to Julia Bruzzese and the report you wrote, titled: “The Media Must Exercise Greater Responsibility in Reporting Information on Lyme Disease,” we would like to know:

1. Did you have a chance to review Julia’s medical records before writing your case report
2. What inspired you to make a public statement about Julia Bruzzese?
3. Do you believe all Lyme patients will have serologic evidence of Lyme disease that meets the CDC’s standards?

With regards to your “Lyme loonies” comment in the 2005 emails that were obtained under FOIA, we would like to know:

1. Do you stand by using this term when referring to Lyme patients?
2. Can you describe your experiences that contributed to this outlook toward patients?
3. As a former NIH program officer, do you believe the way patients are viewed by the CDC, IDSA & NIH has influenced scientific inquiry? 
4. Has any emerging science impacted your views on whether the Lyme disease spirochete can persist after antibiotic treatment?

Dr. Phillip J. Baker's Response:

I respond to your questions as follows:

With regard to Julia Bruzzese and my commentary :

1. Since I had no access to Julia's medical records, I could not have reviewed them, nor did I ever request to do so. I do not know her, did not speak to her, nor did I speak of any of the physicians who may have treated her. If you read my commentary carefully, it is abundantly clear that it was based solely on information presented in the videos as I clearly noted in the commentary. In fact, there is a link to the video in my commentary (see reference #).

2. What motivated me to write the commentary is my displeasure with the vast amount of false and misleading information about Lyme disease being disseminated by the media. This results in a great deal of harm to patients. I thought I also made that clear in the commentary. The media must make a better effort to seek information from reliable sources before communicating it to the public. That is the main point of my commentary. 

3. I believe that all  patients who are actively infected with Lyme disease -- unless they are immunocompromised-- will have serologic evidence of Lyme disease in accordance with the CDC criteria. 

With regard to the "Lyme loonies":

1, 2, and 3 -  I call your attention to a letter that I wrote to the editors of  the Poughkeepsie Journal re: the FOIA. It is posted on the ALDF website : https://www.aldf.com/pdf/Poughkepse_Journal_Letter_to_the_Editor.pdf . I believe it addresses all of your questions.

4.  I also call your attention to two published articles that likewise are posted on the ALDF website:  

     https://www.amjmed.com/article/S0002-9343(17)30480-1/pdf

     https://www.amjmed.com/article/S0002-9343(19)30331-6/pdf 

I also should have included a copy of another publication that is likewise posted on the ALDF website:  https://www.amjmed.com/article/S0002-9343(20)30011-5/pdf .

As you can see from all of the publications I've sent you, most -- if not all-- of the information we provide is evidenced based, i.e., based on the results of peer-reviewed published studies all of which are cited in the bibliographies of these publications. The conclusions advanced are  hardly based on personal opinions.

Please note that I will ask the ALDF legal counsel to review your final product in great detail with regard to the issues/concerns you've raised.

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Dr. Raymond Dattwyler:

TQE Outreach:

Questions from the team are listed below:

In your opinion, why has Lyme disease become so polarized?

In old interview footage with ABC, you’re quoted comparing Lyme disease to syphilis. You say it can last “virtually forever.” What did you mean by this, and do you still believe it to be true?

What do you think about the new science which demonstrates potential persistence of the Lyme bacteria?

You were quoted in Mary Beth Pfeiffer’s book as saying the Lyme disease test was “a stop gap measure.” What did you mean by that? Do you think the Lyme disease test is effective?

In 1988 you wrote a paper titled Seronegative Lyme disease. In this paper you discuss patients who did not test positive on standard Lyme disease tests, but who were deemed to have Lyme disease through other testing methods you conducted. You write that these were patients who had been treated with antibiotics “but in whom chronic Lyme disease subsequently developed.”  Did you change your mind about this early research? If not, why wasn’t this research adopted into the Lyme disease standard of care?

Journalists have suggested that you were consulting for insurance companies on Lyme disease cases, while also drafting the IDSA Lyme disease treatment guidelines. Is this true, and how do you respond to their claims that this was a conflict of interest?

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Dr. Raymond Dattwyler's Response:

I am not sure exactly why things have become so polarized. We could talk about this if you want.

That quote is from about 40 years ago. What I was saying was that if not treated that it can persist. Also, it can cause lasting damage that can be present even after the bacteria has been eradicated.

The first tier tests have an unacceptably high false positive rate. B. burgdorferi has a number of proteins that are very cross reactive with the proteins of other bacteria. The western blot was added to help with that problem. Although it was an improvement, 2 tier testing still has a poor positive predictive value and a positive test is not diagnostic by itself. Also, there are too many false negatives in the first week or 2 of infection. It was obvious that better lab tests needed to be developed.

The antibiotic regimens that had been recommend at that time were inadequate. The doses of penicillin and tetracycline were too low to reach levels in the body to adequately inhibit or kill B. burgdorferi. The recommended regimens using doxycycline or amoxicillin fixed that.

The research for that 1988 paper used B. burgdorferi that was serially passaged in the lab. At the time, we didn't know it but B. burgdorferi looses the ability to produce key proteins when serially passaged. Thus key target proteins were missing and the serologic assays were insensitive. It became a non-issue once we realized that the tests we were using in the 80's had that problem.

Journalists should dig deeper before suggesting that. That was false.

Hope that this is helpful.

I have been an expert in legal cases, mostly malpractice or disability cases. That's it. No, I haven't written or reviewed Lyme disease guidelines policies for insurance companies. It was alleged that I was paid to write the IDSA guidelines that is totally false. No there, there. Be careful of your sources for all of this. Actually, be careful of most things about Lyme.

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Dr. Leonard Sigal

TQE spoke to Dr. Leonard Sigal on the phone, below are relevant excerpts from the conversation.

DR. SIGAL:

I must tell you, having taken care of lots of patients with Lyme disease when I was at Yale. And for that matter, when I was in New Jersey, I wasn't seeing these bad outcomes that a lot of people talk about.... is it possible that the patients were so happy to be finished with Lyme disease, that they didn't notice this ....or if we didn't have long enough follow up for some of these people? It's possible. But these patients thought of Yale as being sort of a second home. It's not as though they vanished. We were in touch with them. So I don't know. I honestly don't know what's going on. Is it possible that there's another infection coincident with the Lyme disease that's causing these really horrific and, and life changing outcomes? I suppose it's possible. I don't have such an organism to point at, of course, but it's possible.

But we didn't see people like this with really bad cognitive outcomes. And it's not that we didn't talk to our patients and it's not that we didn't care about our patients. And it's not as though we were oblivious, it's just that they weren't reporting these kinds of outcomes.

So I don't know what's going on in patients like this. I, I really don't. And I can't even speculate as to the mechanisms of why this is happening.

I looked for evidence of autoimmunity in patients like this in Lyme disease. Never found it. I looked for evidence of ongoing infection using the tools that we had available to us, which was PCR. Of blood and sometimes of central nervous system spinal fluid. And then we developed a more sensitive serologic to use as well, could not find evidence of infection, could not find evidence of ongoing immune response to the infection, could not find the organism.

So I mean that's logic to me and I looked and didn't find it. So that would make us think that these people did not have - and this is people umpteen years ago.There was no evidence to suggest that they had active, ongoing infection. And furthermore, I've never heard of diseases that require more than six months of antibiotics. And that's tuberculosis, tuberculosis is a difficult, difficult organism to treat, but leprosy as well, you know, prolonged course of antibiotics. Borrellia, you know, I'll tell you, at least from the experience I had early on, we used to joke that the organism starts dying when you bring the penicillin into the room.

And many of the patients I saw with "chronic Lyme disease" probably never had Lyme disease in the first place.

Having said that, there's no question that these patients have a poor quality of life. They are after all, not, well. It's not as though people are walking into a doctor's office and saying, I feel perfectly well, but I'd like to be tested for Lyme disease. Or I feel perfectly well, but I have chronic Lyme disease. Isn't there a contradiction in reality there? Of course there is. So it's not as though it's not as though these people are well, nobody would claim that they are well, the question is what's the cause?

What is the likelihood that they have an infection with borrelia, which is a systemic infection, with no evidence of ongoing infection? In fact, oftentimes no evidence of infection in the first place, because there's no antibody test that's positive. There's no PCR test that's positive…..

Nobody gives a rats patoo about us. Because it's so easy to focus on the doctors who care about patients. As if we didn't, there's no dichotomy here. We all care about patients. But  if I think somebody does not need antibiotics, antibiotics have toxicities, I will do my best to avoid the patient getting unnecessary antibiotics. That is my job, right. To protect the patient.

So until such time, as there's scientific proof of the necessity for antibiotics, I'm not gonna prescribe antibiotics. You know you referred earlier to cancer drugs. Okay. If an oncologist comes along and says, I'm gonna try drug B for disease A and it's never been proven effective. There's no evidence that it works. Is that a good thing?

TQE:

Well, people with cancer do it all the time, right?

DR. SIGAL:

No people in cancer come up with a strategy whereby a drug that's not been approved yet is studied, or it seems reasonable.

To just give antibiotics for no good reason makes no sense.

TQE:

Sure. But it's a risk analysis right? And so if you judge Lyme disease to be risky enough that it's gonna trigger this cascade of symptoms, then antibiotics ultimately are one of the safest drugs...

DR. SIGAL:

But let's back up for a second. Where was the evidence way back when that happened? There was no such evidence.

TQE:

Well, there was evidence. I mean, there's animal studies.

DR. SIGAL:

My friend, I beg to differ with you. In the beginning there was none.

In the beginning, there was no chronic Lyme disease first of all. Second of all, when people actually studied chronic Lyme disease, they found a lot of other explanations for what was going on. I actually published a paper like that in the American journal of medicine. So when, when the other side can prove to me that it is a real phenomenon, then I will change my strategy.

TQE:

Well, what do you...

DR. SIGAL:

Wait, let me finish. This is a paragraph, not a sentence. So if the other side can prove to me that there's something real going on, I will help analyze it and come up with a strategy. That's appropriate to the science that emanates from that study. If, on the other hand, the only thing I get from the "other side" is accusations and threats. Why in the name of heaven, would I listen to them? Why in the name of heaven, would I do what they ask me to do?

TQE:

There is new science right now, that's coming out of various universities that does open the door a little bit, whether it to be to persistent infection, at least to something that's more complicated. You made the comment about penicillin killing Borrellia as you walk in the room. I mean, scientists at Northeastern say that doxycycline doesn't even kill the bacteria in the test tube in a lot of cases that it causes it to go into this more dormant form. And then the monkey models out of Tulane....

DR. SIGAL:

How many other people have proven that?

There are these studies, these claims that have not been documented, have not been corroborated or substantiated by any other laboratory, and yet they become part of the dogma.

Had some people been open to talking to patient groups and advocacy groups earlier on, it might have worked out a bit differently, but as one of my mentors, when I was at Yale told me if you do a study and you come up with a result and the study was well done, you publish it. Now, if, five years from now somebody finds a different explanation. You were right when you published it, you can't take into consideration what you learned 20 years from now, and then trash the work that you did initially, you just can't do that. That's not fair. So in retrospect, is there reason to believe that Lyme disease is more common than we thought originally? Yes.

Do I now see that there are people with Lyme disease who don't get better after what we thought back then was adequate antibiotic therapy. Yeah. There's no question about that. I don't understand it. I really don't. And I wonder sometimes as I said earlier, that maybe there's another infection going on, but I don't feel as though what I did made that circumstance or that phenomenon worse because I could only work with what I had at the time.