TOUCHED BY LYME: Media Coverage Response
Guest blogger Jennifer Crystal responds to recent media coverage in by reporters from the Boston Globe and the New Yorker.
Efforts of increased Lyme awareness surely are paying off, as evidenced by the high profile media coverage that tick-borne diseases have recently received. The New Yorker just published “The Lyme Wars,” written by Michael Specter, who was subsequently interviewed on NPR’s “Fresh Air” with Terry Gross. Beth Daley at The Boston Globe is doing a series on Lyme disease, and she, too, did an interview on New Hampshire’s NPR.
I am thrilled to see so much press for the burgeoning epidemic of tick-borne diseases, but am also troubled by some of the misinformation that has been presented. Amid a polarized medico-political environment, mass distribution of negative, misleading or downright incorrect information only worsens the battle for patients fighting for treatment and validation. To that end, I’d like to set the record straight on a few points:
1. The “Chronic Lyme” Debate: In his interview, NPR’s Brady Carlson refers to chronic Lyme as symptoms that “persist beyond initial treatment.” Sometimes, this is the case. More likely, however, is that the patient’s infection persists because they were never treated at all. Across the board in media references to chronic Lyme, the assumption is made that the patient was treated in the first place. The reason that so many cases of Lyme become chronic—or are persistent—is because they were mis-or-undiagnosed to start with. Most cases of Lyme that are caught immediately can be treated with a standard course of antibiotics. If the infection is not caught, however, the spirochetes replicate and invade every system of the body, often crossing the blood-brain barrier. A short course of antibiotics won’t touch an infection that is that advanced, and thus the infection is considered persistent. If more attention could be paid to early detection and accurate diagnostics, this debate over “chronic Lyme” might not even exist.
2. Evidence of Persistent Infection: Despite outlining in his article some research that is being done to prove persistent infection, Michael Specter states in his NPR interview, “…if you don’t have any evidence of the disease, it’s really hard to say that you have the disease.” While diagnostic tests can be faulty, there is mounting evidence that persistent tick-borne infections exists; to state outright that it doesn’t is not only false, but also damning. The most recent issue of The Lyme Times is chock full of articles, written by or about medical doctors and researchers, that prove the bold, red statement on the front cover of the issue: “Borrelia Hard to Kill.” For instance, Dr. Brian Fallon, Director of the Lyme and Tick-Borne Diseases Research Center at Columbia University is quoted in one of The Lyme Times articles as saying, “Now we have these major studies published where nobody can dispute the persistence of the organism.”. Monica Embers, PhD, has done research at Tulane’s Primate Research Center which shows that spirochetes persist in primate tissues after treatment. Dr. Eva Sapi’s studies on biofilm colonies suggest mechanisms for persistent infection. How about Dr. Stephen Barthold, who during his congressional testimony said: “Persisting viable but non-cultivable B. burgdorferi is now a convincing phenomenon based upon a number of animal-based (mouse, dog and primate) studies using a number of different antibiotics, and the significance of continued infection indeed needs to be better understood. It is time to recognize that Lyme disease is not a simple bacterial infection.” The evidence goes on and on…
3. Nomenclature: In Specter’s NPR interview, the International Lyme and Associated Diseases Society (ILADS) is mistakenly referred to as the International Lyme Disease Society. This is a very, very important distinction to make. Members of this medical society focus not just on Lyme disease, but on all tick-borne diseases. Specter duly notes in both his article and interview the importance of testing for co-infections, but we must be careful to include these other tick-borne diseases in our terminology. One of the reasons some Lyme patients do not get better is that they are being treated only for Lyme; they were never tested for co-infections such as babesia, ehrlichia, bartonella, and anaplasma, which require a different treatment protocol.
4. The Lyme Wars: There is a clear divide between doctors who follow IDSA/CDC treatment protocols and ILADS doctors who are willing to prescribe outside these stringent guidelines. This is a battle between two camps of doctors, not between patients and doctors, as implied in recent press. Specter stated in his interview, “The ‘chronic Lyme’ folks think all physicians are hard-hearted.” First of all, this group of “chronic Lyme folks” includes medical doctors who treat persistent infection. (Brady Carlson also referred to a “community of Lyme patients.” It’s important to note that the tick-borne disease community includes medical practitioners). Moreover, patients with chronic Lyme most certainly do not “think all doctors are hard-hearted.” I am a patient with chronic Lyme. I think my own doctor, other ILADS doctors and many other physicians and practitioners who are trying to learn more about tick-borne illnesses are anything but hard-hearted. Making such a gross umbrella statement about “chronic Lyme folks” is, frankly, poor journalism. Another inaccurate blanket statement Specter made was, “It’s not a syndrome that is recognized by organized medicine.” What exactly does Specter mean by “organized medicine”? Are ILADS doctors, who hold the same medical degrees and took the same Hippocratic Oath as those doctors who fall on the IDSA side of the divide, not part of “organized medicine”? The reference to as the people of CDC/IDSA as the “front line” in the Terry Gross interview is incorrect—these are people who are sitting in pristine lab offices. The front line doctors are the ILADS physicians.
5. Diagnostics: Doctors on both sides of the tick-borne illness divide agree that poor testing is a major problem for diagnosis. Efforts are being made to improve tests so that more patients can be accurately diagnosed in a timely manner. Until that time comes, though, it’s important to recognize that Lyme-literate physicians are dubbed such because they know the ins-and-outs of tick-borne diseases. They know what symptoms they are looking for. Tick-borne diseases are not catch-all diagnoses for people who can’t otherwise figure out what plagues them. Relying on evidence-based medicine, LLMDs know how to diagnose Lyme and co-infections in the same way that general practitioners know how to diagnose the flu or tonsillitis—they don’t go solely on test results, but on informed analysis of a patient’s presentation. Specter stated that patients in pain “…want to grasp onto something. It’s a lot more comforting to say, ‘I have this problem’ than, ‘I have terrible pain. I can’t get rid of it. No one can diagnose it, and I don’t know what to do.’” It is comforting to have an answer—but it’s not comforting to have that answer be chronic tick-borne infection. Anyone who has suffered with these illnesses can tell you they are anything but comfortable—including symptoms that go far beyond physical pain—and I don’t know anyone who would voluntarily have TBDs.
After suffering for over a decade with TBDs, I would gladly trade them in. But I have them, and I must deal with them. They’re not something I just “grasp onto,” a vague answer that I came to when I didn’t test positive for anything else. They’re diagnoses my doctor came to after careful analysis of my entire medical history and my blood work. Oh, and PS: that blood work happened to be CDC positive. Specter’s assertion that chronic Lyme patients don’t test positive is incorrect. While inaccuracy of the test are acknowledged by both sides, a large scale study of over 4,000 patients found that most had in fact tested positively for Lyme disease, only 400 did not (these were ultimately excluded from the study). Among the respondents included in the study, 41.3% had been diagnosed based on a CDC-positive two-tier test result (ELISA and Western blot) or a CDC-positive Western blot alone. The rest of the cohort (58.7%) was clinically diagnosed with other supporting laboratory tests. This study was published in health policy, a widely respected peer-reviewed journal.
We are all learning as we go with these insidious diseases. Despite some erroneous statements, I am grateful that The New Yorker, NPR and The Boston Globe are giving due attention to tick-borne illnesses (I’m also grateful to Michael Specter for giving a shout-out to this blog!). Hopefully, with continued awareness efforts, we can all work together to get accurate information out to patients, doctors, and people who may get sucked into this difficult world with one tick bite.
Jennifer,
Thank you for such a great response. I hope you send this to Terry Gross at NPR.
I am a CLD patient. I have no idea if I have co-infections because my LLMD can no longer risk retribution for treating his patients so doesn’t accept insurances. This is commonplace with LLMD’s. I am also allergic to the large majority of antibiotics used for lyme so with a 22yr old infection I will be taking lyme disease to my grave. Thank you goes to University of MI hospital for mis-diagnosis of Lupus 22yrs ago, I had no Lupus symptoms, only lyme ones even back then.
Thank you for commenting on the recent media coverage I appreciate the clarifications you made. However, I do want to point out that your first point is well taken but you should not support one side (those who go undiagnosed) while dismissing the other (those who receive treatment but “sometimes” still have lyme). We are in this together and by doing so you miss a key point, lyme patients who are treated, like myself, often receive the CDC’s recommended treatment, unless they are fortunate enough to be treated by a LLMD. This 3-4 weeks of treatment may not be enough, as you point out how hard it is to kill. I know I was still sick when my treatment stopped. I believed the infectious disease doctor, that I was sent to, that I would feel better soon. I never did feel like the old me.
I also agree with your Lyme Wars explanation. I just want to point out that when I did get very sick almost two years after my “treatment” I did feel like I was in a battle. My primary care doctor did not believe me when I said “I think I have lyme again.” She told me according to the CDC my new test “showed no reinfection of lyme.” She sent me to many specialist. I was diagnosed with fibromylagia, chronic fatigue, and bipolar. During this time I went online and learned about lyme. I found my own LLMD over a hundred miles away. After two visits I learned my insurance refused to pay for these visits or any further treatment. I tried to appeal, my Primary doctor refused to sign a referral that was needed. I was broke, I could barely afford gas, my treatment was stopped. As a patient with lyme I am a involved in this war between the two sides. I also believe the CDC, IDSA, and insurance companies are major players too.
Well said Jen!
When I read the New Yorker article, Mr. Specter’s comment, alleging that chronic Lyme victims are likely hypochondriacs, who are “comforted” to have ANY reason for their pain, this literally jumped off the page for me! I was appalled that anyone would dare to make such a disparaging insinuation – much less in print! Where were his editors on this?
Perhaps Mr. Specter should have joined me on my “chronic” monthly trek, across three state lines, to usher my mother from doctor to doctor; in an attempt to help her find the reason for her short term memory loss, and her frightening panic attacks. It took FOURTEEN YEARS, and at least FOUR neurologists, following the initial tick-bite, before one of these “experts” suggested, that we should do a spinal tap “just to rule out” Lyme Disease.
We had NO IDEA that Lyme could attack the central nervous system and damage the brain… and apparently, neither did ANY of those dozens of medical “experts” and PCPs who had examined my Mom during this time!
Just like the opening scenes of the movie “Under Our Skin” … they told my Mom that; “You have anxiety,” or “You need an anti-depressant” (or another, or another), or that “You should go for counseling to ease your stress.” She walked out of one Neuro’s office spouting “I am NOT crazy!” never to return.
THEN, when a heroine in Rhode Island found that mom’s spinal fluid was riddled with borrelia spirochetes … what treatment did she receive? TREATMENT BY MEANS OF INSURANCE GUIDELINES – NOT by means of EFFICACY!
But despite my months of research, I never realized that my mother’s treatment might have been inadequate, until I discovered the Lyme Community, and some very informative websites like this one.
Despite her innate strength, and her stubborn resolve, my Mom has withered like an overripe fruit on the vine. She has merely been “treated” with sedating (and addictive) drugs for her supposed Alzheimers Disease, while the Borrelia infection still marched, from neuron to neuron to neuron. But the gleam in her eye when I walk into her room, and her struggling and stilted words, prove that she is still fighting, and that she is really still “with us.”
Monica Embers has proven that 28 days of IV Rocephin is NOT enough to rid primates of a neurological lyme infection. Doctors Fallon and Stricker of Columbia and UCal/Davis have shown that even advanced cases of neuro-Lyme can be ameliorated with antibiotics that can cross the blood-brain barrier.
But like Lister and Pasteur, forward-thinking healers and researchers are initially castigated and ignored.
We are told that my Mom is now in “late stage” … but late stage WHAT?
This disease, and the controversy over how we should handle our Mom’s debilitation, has spawned a court battle “royale” between the family. As a result of power grabs and jealousies, no one has told Mom’s current physicians that she was definitively diagnosed with neurological Lyme disease, over three years ago! When I recently raised this issue with the doctors at Mom’s hospital bedside, or in the outer hallways of a courtroom, the response has been deafening silence – accompanied by that “deer in the headlights” stare!
Our medical community is CLUELESS about tick-borne diseases.
Is it any wonder that some editors at The New Yorker are clueless as well?
Thank you Jen, for sharing your invaluable insights. Success stories like yours are what help the rest of us to hold out hope. It is always right and just to call ignorance out from the darkness; especially when so many lives are hanging in the balance.
What an insightful, informative post! Thank you so much for sharing. What an advancement for the community.
‘Glad CALDA is on top of this. I personally thanked Ms. Daley for her article. To my knowledge, this is the first time the Boston Globe did its public duty and announced in any form that Lyme doctor protection is Mass. state law. ‘Comes three years late, but progress comes in bites and body count, I guess.
Having chronic Lyme has made me do a lot of research.A couple years ago I saw an article stating that Germany had been testing mosquitoes and that 26% had it also.Could Lyme or a co-infection get passed on by them or any other biting insect?
Woke up with 102 fever w/ no symptoms. After weeks of Medical silliness, I got lucky and got an ‘acute Lyme’ diagnosis and a Dr who knew then a lot of what we are finding out now. I took antibiotics for the infection and Lortab for the searing pain. I was cured. Well, 2 1/2 hips and S1to L5 fusion starting at age 48.
I have the odd day where I feel Lymeish. Listless, flu symptoms, aches, etc. Next day – all gone. Does any one else have that experience? Is there treatment? Or should I stop whining and continue to suffer the occasional very bad day?