WBUR

Lyme Disease Complicates Doctor-Patient Relationship

BOSTON — Controversy still exists over the long-term diagnosis and treatment of Lyme disease. A small group of doctors and some sufferers say that long-term symptoms such as headache, fatigue and pain stem from an ongoing infection from Lyme bacteria that can persist even after antibiotics. They say that Lyme disease itself can be “chronic.”

However, many doctors and researchers in mainstream medicine reject the theory that the bacteria can persist. They agree that Lyme disease can have long-term effects, but blame lingering damage rather than active bacteria.

Dr. Mark Drapkin is one of those doctors. He is the associate chief of the Division of Infectious Diseases at Newton-Wellesley Hospital and a professor at Tufts University School of Medicine. He spoke with Morning Edition host Bob Oakes about the issue.

Dr. Mark Drapkin: After treating an infection and eradicating the organism, there can be a period during which the person still feels ill, during which various manifestations can occur. They can be immune kind of manifestations, for example a joint might still suffer the pain and swelling that may have accompanied the original infective arthritis. But now that is a damaged joint and the damage has a life of its own. But that does not necessarily imply that the bug is still there and that the problem is that the organism itself has not been eradicated.

Bob Oakes: Let me get you to respond to something said by another doctor, a specialist in Lyme. He’s Dr. Daniel Cameron, an internist based in Mount Kisco, N.Y., former president of the International Lyme and Associated Diseases Society. He says there needs to be an acknowledgement that people are suffering for months or years after being diagnosed with Lyme. And he also thinks that there should be a serious look by the medical establishment at some alternative strategies, such as long-term antibiotic treatment for patients:

I’ve been successful for over 20 years in practice at taking these complex patients and getting them better. I just need the research community to take these strategies and work with them.

Why has it been so hard to get the research community to dig deeper into treatments that some patients and some doctors say are working for patients?

Well, there have been some attempts to do that. With all due respect to the physician whom you have just quoted, when a person says, “I’ve been doing this for 20 years and it works,” I don’t listen very carefully because that’s not a research statement. These antibiotics are not benign. And I can match anecdote for anecdote if people have done well with antibiotics, they come to me when they have not done well with the antibiotics.

But you and I both know there are people on the other end of the radio who are suffering from Lyme who are going to say, “Well you know, I have a doctor who gives me antibiotic treatments and I feel that I’m doing much better with them.”

I sympathize with that person. I can’t argue with a person who feels better and I’m glad that the person’s feeling better. But does that mean that that person would feel any better or any worse if that individual received a placebo? I don’t know unless there is a trial that tells me that. I’m a physician. I’ve been in practice for 40 years now. Do I ever use drugs in ways that are not completely justified by medical science? Of course. We have to do things for patients sometimes that are not bolstered by excellent science. We know that. But with respect to Lyme disease, I would just ask that the same standards of testing, of investigation be applied to Lyme disease as are applied to any other infectious or other disease.

In a way we’re talking about, or maybe around, the story of Barbara MacLeod, a former reporter for New England Cable News who says she’s been battling Lyme disease for more than 20 years. She gives this assessment:

This is one of those diseases where you don’t get it until you get it. And the small group of doctors who will treat aggressively, and who believe the patients, they usually have some personal experience with Lyme. Where they can’t believe that their mother, sister, daughter, son or themselves are suffering the way they are, and can’t get answers and can’t get treatment.

So what do you say to someone like Barbara MacLeod, who has had great difficulty with Lyme disease for a couple of decades and has had trouble getting treatment for it?

Well, I hesitate to comment on a particular person’s illness.

Because you haven’t examined that person?

I haven’t examined the person. I haven’t gone over the medical record. I think it would be wrong for me to make any snap judgements about a particular individual’s diagnosis or treatment.

So what would you say to a person who’s feeling the symptoms — fatigue, headache, pain — and can’t find any answer?

I will be open-minded and I will not comment on an individual’s diagnosis until I have the data: the face-to-face talk time, the physical examination, the review of all prior laboratory testing. Those same symptoms could be early HIV infection. I would wonder has the person been HIV tested. Those same symptoms could be those of Lupus. I would wonder if that disease had been considered in the differential diagnosis. There are many, many instances where people have come to me thinking that they had one entity, and it turns out they have something else entirely.

Is it [in] some ways more difficult to treat patients because they come in with this preconceived notion that they think they have Lyme disease, because there’s so much information available about what many people call “chronic” Lyme disease, or others call “post-Lyme” disease syndrome?

Once you latch on to a diagnosis, it can be very hard to disabuse you of that notion. And if a patient has a list of symptoms and then sort of looks around and says, “OK, what matches my list?” And then starts looking for other lists and you come across a Lyme website, for example, that lists all of those symptoms, you say, “Oh my God. That’s me. That’s me. And that’s just what I’ve been experiencing.” And latches onto that diagnosis. It does cause difficulty. It does cause difficulty, because I am trying to look at this patient from a broader perspective and to try to keep my mind open. How much more difficult it is for a patient to keep his or her mind open when that person has recognized what seems to be a list of symptoms that matches his or hers exactly.

Please follow our community rules when engaging in comment discussion on wbur.org.
  • Alexander Davis

    Certainly some people go to Dr. Drapkin thinking they might have Lyme disease when they do not.  However with the increasing deer population more and more people are becoming infected.  In 1930 there were 300,000 deer in the US. Now there are 30 million. The deer population can double in 1-2 years.  As pointed out on the panel discussion yesterday, deer ticks dropped from one deer/year can produce 450,000 eggs. That’s a lot of potential Lyme victims.

  • Burdge52

    Thank you Dr Cameron!
    My wife has a message to the IDSA and all the Doctors that could care less about helping people with Lyme and Tick borne illnesses.
    http://www.youtube.com/watch?v=LK2a3PrAXeY&context=C3e670bbADOEgsToPDskL10KM5-lf613OCwx3fOWg7

  • Steven Andrada

    Dr Drapkin, what do you say to someone who has been suffering very badly with pain for over 8 years now and has had every test for every disease done to eliminate HIV or Lupus and so on ?
    My dog has had Lyme disease multiple times and been treated for it. Whether it is bacteria in my system or left over junk from the bacteria I don’t care I am in pain and nothing helps.
    Steve Andrada

  • Dr_Alex

     How sad that the person I respect much as a reporter talks about the subject as a matter of “controversy”.
    Following is one of the best published reviews on the subject. Please, take a look at the summary:
    Studies
    have shown that most patients diagnosed with chronic Lyme disease either have no objective evidence of previous or current infection with Borrelia burgdorferi
    or are patients who should be classified as having post-Lyme disease syndrome, which
    is defined as continuing or relapsing nonspecific symptoms (such as fatigue, musculoskeletal
    pain, and cognitive complaints) in a patient previously treated for Lyme disease.
    Despite extensive study, there is currently no clear evidence that post-Lyme disease
    syndrome is caused by persistent infection with B burgdorferi.
    Four randomized placebo-controlled studies have shown that antibiotic therapy
    offers no sustained benefit to patients who have post-Lyme disease syndrome. These
    studies also showed a substantial placebo effect and a significant risk of treatment-related
    adverse events. Further research to elucidate the mechanisms underlying persistent
    symptoms after Lyme disease and controlled trials of new approaches to the treatment
    and management of these patients are needed.

    Chronic Lyme Disease: A Review

    Infectious Disease Clinics of North America -

    Volume 22, Issue 2 (June 2008)

    • CTPatriot

       Just because you can dig up one biased and flawed piece of opinion and/or research put out by the IDSA crowd after another does not make you right. It merely makes you a muddier of the water.

      Anyone with an objective mind knows that there is no definitive proof whatsoever that Lyme infection has been cleared in chronic Lyme patients, and a growing body of research to suggest it hasn’t. Being someone who appears aware of the research, surely you are aware of the Barthold mouse studies and the Embers monkey studies, both of which have shown that the Lyme disease spirochete survives IDSA recommended courses of treatment and remains viable, the only question remaining to be answered being whether those surviving bacteria can cause ongoing disease.

      Beyond that, there is the oft-quoted Vicki Logan case study published by Dr. Ken Liegner, in which the Lyme bacteria was cultured from a human who had received massive amounts of antibiotics. She died from Lyme disease. And then there is the case study of a gym teacher from Long Island whose Lyme disease was treated according to IDSA guidelines, and then when he failed to get completely well, showing signs of dementia, was diagnosed with “progressive dementia” and placed into a nursing home where he was never again treated for Lyme and died within 2 years. Autopsy revealed Lyme disease spirochetes in his brain.

      So go on ignoring all the evidence that says you’re wrong. It won’t change the fact that a not insignificant percentage of Lyme disease patients fail IDSA recommended courses of treatment and whose condition is described as “equivalent to congestive heart failure” by none other than the IDSA’s Mark Klempner. Something is causing that, and you don’t have any more proof of what it is or isn’t than I do.

  • Stevenandrada

    Dr Alex, like I said I don’t care what you call it…I am in pain and doctors worldwide need to understand the kind of suffering we are talking about! Stop analyzing the “controversy and lend a hand to help! for 8 years now I have been keeping an open mind and not labeling my condition with a name….trying to keep an open mind, but all signs point to some post tick born infection. Have you had any direct experience with helping someone with chronic pain?

    • Dr_Alex

       Yes, I do

    • Burdge52

      As long as the controversy continues
      the Insurance companys will be HAPPY!!
      They are doing just what they want to
      drag this mess out as long as they can.

  • Tom Savage

     “I’ve been doing this for 20 years and it works,” I don’t listen very carefully because that’s not a research statement. These antibiotics are not benign.”
    First off Dr. Drapkin, that is the problem! You are NOT listening! You also don’t have an open mind with a comment like this!
    I think you should listen and have a truly open mind. That to me is a truly compassionate doctor, who’s goal is to help people!
    I’ve been fighting chronic Lyme for 7 years; diagnosed by a Lyme literate Dr. who read my negative Western Blot, was actually positve! According to the CDC’s criteria it was negative!! Diagnostics is another problem, actually a crapshoot!
    Let’s all have an open mind and listen so we can agree to disagree and get down to figuring out what is causing chronic Lyme or it’s co-infections. Whether it’s an active infection or something left over causing an immune response!
    Enough BS, let’s figure this out; NOW!

  • http://www.facebook.com/people/Tessa-Mccall/730211001 Tessa Mccall

    For every story that puts the controversy about chronic lyme disease to bed – there is someone there to white it out with the can of white out.  There is too many medical publications and valid sources that say the bacteria hides in your tissues and organs and even lymph nodes (your immune system) to continue this line that 3 -6 weeks of antibiotics get rid of it.  If the person never saw the vector of transmission and didnt know they have been infected then the bacteria has really disseminated.  Stop the lies at the expense of the American public.  I have been tested for everything under the sun – The only positive test is for lyme and babesia – and I never saw a tick except 1996 after the birth of my first son.

    Do I believe there is other modes of transmission? Absolutely! The state of Texas on their web site about lyme disease says the bacteria can be transmitted by fleas, ticks, and possible other biting insects. Look for yourself and if you need further confirmation call Eric Fonken. He is a very approachable man and will discuss their studies on fleas in 1990′s. CDC says they dont know what your talking about when you write to them about fleas. Its all this nicely put together nasty web that gets built up again and again after its knocked down. How many more years will people be subjected to the lies about lyme disease and the co-infections that go along with the bite.

    • Guest

      Can you please cite your “valid sources” that indicate that Borrelia burgdorferi persists in humans after antibiotic treatment?

  • BL

    Greed has taken the lead when it comes to LD and people are suffering.  Epidemic numbers and government is still allowing the same organizations to continue to deny year after year!  It’s time government demands change and stops accepting poor testing and treatment options.  We must demand this change…

  • Manduhai

    I am dismayed to see this argument posed as mainstream researchers versus a small number of alternative doctors.  The Center for Lyme Disease and Tick Born Illness at Colombia is hardly alternative and they diagnose and treat chronic lyme.  Further, their research delves directly into the many disagreements and offers science not assertion.  The science is not running with the ISDA positions.  Further, the disagreement can not be reduced to numbers of doctors who believe this or that.  The basic science of lyme hasn’t been done.  It is about getting it right not about headcounts.  If WBUR wanted to have an honest discussion about science they would have included Columbia in this discussion. 

    • Burdge52

      My wife was very ill when she went to Colombia
      she went to one of their TOP doctors ( Dr. Douglas Marratta )
      He missed her Babesiosis and her other infections.
      He found nothing and did nothing for us!
      That visit cost my insurance company $500.00 for nothing!
      me a day off without pay and the expence of driving to New York and everything that goes along with a trip like that.
      close to $1,000.00 day counting everything! 
      Colombia was not cutting edge when it comes to tick borne illnesses in our case!
      Watch my wifes testimony in front of the Human Services Committee in Harrisburg Pa.
      We thought Colombia would be the place where we could have gotten an answer but
      WE WERE WRONG!
      That’s the problem everyone has the answer when in fact they don’t!
      The ILADS Doctors mostly get the train wreck cases of tick borne illnesses
      after all the other doctors FAIL!
      My wife would have been dead!
      if it wasn’t for her doctor that has been treating her long term!

      http://www.youtube.com/watch?v=r0lwBuFAI20

      • Manduhai

        I am sorry the folks at Columbia didn’t get your wife’s case right.  That does not negate the value of their research and  the fact that it belongs in this discussion.

        • Burdge52

          I have been an electrician for over 34 years
          When I perform work for hospitals, schools and colleges
          my work has to be 100% right or they don’t pay the bill.
          if any of the life safety systems fire alarms , nurse call systems fail people can die!!!!!
          They withhold payment for as long as it takes until everything works 100% then one year after final inspection you get your final 10% payment of the total cost of the job.
          they hold this money just in case something else goes wrong.
          SORRY to my wife and I have cost us over $120,000.00 out of pocket and growing every month.
          100′s of thousands people and their families are going through what we are going through everyday.
          some with their whole families being treated for tick borne illnesses.
          most families don’t have the life savings that we had and suffer with very little help.
          BUT WITH ALL THAT SAID.
          THE DOCTORS AND HOSPITALS STILL GET PAID.
          THAT IN IT SELF SHOULD BE A CRIME!
          SORRY JUST DOESN’T CUT IT!
          why should doctors and hospitals get paid when services are not rendered?
          If you asked for my vote?
          Columbia and the Mayo Clinic should have nothing to do with this debate they are years behind the doctors with ILADS.
          ILADS doctors are the front lines in this battle.
          not the hospitals that have taken our money and never believed the people that came in looking for answers and were turned away by these TOP hospitals and doctors.
          HOW DO WE GET OUR MONEY BACK???
          THE DELAY IN TREATMENT CAUSED THIS DISEASE TO GO TO MY WIFES BRAIN AND WE PAY $$$$$$ EVERY MONTH FOR HER CONTINUED TREATMENT BECAUSE OF WHAT THESE PEOPLE DIDN’T DO.
          NON OF THESE HOSPITALS OR DOCTORS HAVE CONTACTED US IN REGUARD OF HOW MY WIFE IS DOING THESE DAYS!!!
          NONE!!!!!!
          WE ARE JUST A NUMBER THAT THEY RECIEVED MONEY OFF OF.
          WE NEED TO FORCE THE HEALTH INSURANCE COMPANYS TO PAY FOR OUR TREATMENT!
          THEN AND ONLY THEN WILL YOU SEE MOVEMENT IN THE LYME WARS!
          my wife is not one of the 38,000 people in Pennsylvania with lyme disease. WHY because she didn’t have 5 bands by Allen Steeres CORRUPT testing methods.
          HOW MANY PEOPLE IN OUR COUNTRY ARE SUFFERING EVERY DAY BECAUSE OF THIS CORRUPT TESTING ?

  • NikiV

    I was fortunate to have been recently treated for Babesiosis by Dr. Drapkin, and I can tell listeners that he is one of the most compassionate doctors I have ever been treated by. 
        He squeezed me into his schedule at the very last minute, because he did not want me to wait even an extra day (my PC made the initial diagnosis, but because Babesiosis isn’t that common, wanted me seen by in ID specialist; my symptoms weren’t horribly severe, but definitely serious). He spent over an hour with me, took the most detailed history imaginable, examined me, was kind and wanted me to understand all the factors of the disease. Before I left, he insisted on giving me his cell phone #, so that if, over the upcoming weekend, I didn’t feel well, I could contact him. Not many doctors of that caliber around anymore. He has contacted me since my exam  to see how I’ve been doing.     So: yes, on the radio, any doctor would hesitate to offer any diagnostic help. However, he and his colleagues are doing wonderful work at Newton-Wellesley, and he is a very, very smart, thoughtful, thorough, experienced doctor, who, in fact, listens very actively and very well. 

    • Jielin41

      I also was fortunate to get treated by Dr. Drapkin last summer. Normal antibiotics prescribed when I was in stage 1 lyme, failed, and I saw Dr. Drapkin shortly after I had entered Stage 2. He was the best doctor I’ve ever had. He was attentive, listened and was aggresive in treating the lyme. By the end of the summer I was clear of the bacteria. While there was residual damage, thankfully, my post lyme was short, and only last a couple months. By November I was back to good ol me. I will forever be grateful for his aid.

      • CTPatriot

         So are you telling us that Dr. Drapkin treated your Lyme disease beyond what the IDSA guidelines recommend? I think the answer to this would be very revealing.

        • Sarah Mooney

          Sounds like he treated her with IV antibiotics for disseminated Lyme disease (also called stage 2) where it affects the heart or central nervous system. This is part of the IDSA guidelines and is not controversial. The argument made by those who believe in chronic Lyme is that the treatment is too short – IDSA recommends 28 days for disseminated infection whereas they claim it needs months or years,

          • CTPatriot

            But you don’t know for sure. All you really know is how to parrot the IDSA talking points. Thanks for playing.

    • Alexander Davis

      The June 21 New England Journal of Medicine features
      a review article on babesiosis, another disease carried by the deer tick, which
      can be fatal and in some areas in southern New England is now almost as common
      as Lyme disease. The article states that the spread of this disease has been
      fueled by the expansion of the deer population, thus “elimination of deer
      populations sharply reduces the risk of infection but is difficult to
      implement.”  Certainly animal rights
      groups oppose deer herd thinning and point out that the mouse is the source of
      Lyme bacteria. This is true, but only immature forms of ticks can feed on mice:
      adult ticks will not feed on rodents because they need blood from larger
      mammals. Without eggs from the adult ticks, there are no immature tick forms.  Thus on Monhegan Island, Lyme disease was
      successfully controlled by eliminating the deer, and this broke the tick cycle.
      The mice are still there. Also, CT expert Dr. Kirby Stafford writes that it is
      doubtful that after deer removal the deer tick can be maintained on medium
      sized hosts like raccoons, which frequently remove ticks by grooming. In Bridgeport CT,
      lowering the deer population 74% resulted in a 92% decrease in nymphal deer
      ticks. In Groton CT the deer population was reduced from 77 per square mile to
      10 per square mile, and the Lyme Disease incidence decreased by 83%.

  • shobud

    Let’s hear from a Dr on the ground in PA, another endemic area. This is a very different take on the reality of this disease and the effectiveness of short vs long term antibiotic treatment.

    http://www.youtube.com/watchv=JpPFKp3FXmQ&feature=player_embedded

     

  • Joan of Arc

    Dr. Yost’s powerful testimony…Check out this video on YouTube:

    http://www.youtube.com/watch?v=EwW0-ky7DdY&feature=youtube_gdata_player

  • Joan of Arc
  • SH

    Thank you, WBUR, for doing this series – but I’m reminded of why I avoid the controversies, and don’t publicly identify myself as someone with Lyme, though had it for 29 years. It’s been a nightmare; I’ve never given up, though I so wish I could. What enrages me is the ignorance and deliberate denial I see over and over again in these discussions, people who say there are concerned about science ignoring what is in the scientific literature, as well as ignoring the clinical experience of experienced physicians (anecdotal, to be sure – but that doesn’t negate the value of what they’ve learned when the disease is mysterious and the suffering intense) and the many many patients whose stories are so similar. I never thought I had Lyme, it was the farthest thing from my mind; a cautious and responsible doctor, looking at my tests and an obvious set of symptoms, after observing me for more than a year, finally gave me a clinical diagnosis of chronic Lyme, after 22 years of being ill. Since then it has continued to be a terrific struggle, and as I’m aging the challenge has been greater in some ways, but also because of my doctor’s care, and his ability to keep current with the literature, and be open to anything which shows promise – and understanding that each patient is different, and may react to the same treatments in different ways – I am still able to function, have made some substantial improvements, and hope to be significantly better someday. I work on my healing every day. I don’t listen to these arguments because they bring me to despair. I just hope that we can learn to see what is right in front of our faces, and work to find a solution, without prejudice, posturing, and denial.

    • SH

      I will mention also that I am a resident of southern California, and contracted the disease – as far as I can tell, based on symptoms and the known presence of Lyme at the time (a presence I learned about after my diagnosis) – in northern California in late 1983. While this is clearly a huge problem in New England, it has been in other parts of the country for decades now, and with different vectors – in California it’s known to be transmitted by the western black-legged tick. Understanding that WBUR would want a strong local emphasis, it would have been nice if a little more acknowledgement was made in the series that this is a national problem, and there is even more to be concerned about than deer ticks in New England.

  • Burdge52

    Pennsylvania’s Senator Robert Casey asks the CDC for HELP! with Lyme disease!!!!!
    My Union the IBEW just sent our records to a review board in Colorado and took away our LOCAL PENNSYLVANIA DOCTOR!
    The only doctor after 22 doctors that saved my wifes life.
    The doctors in Colorado never saw my wife! OBAMACARE!!!!!
    That’s what my B M told me when he told us he was goin to help us.
    He told me Obamacare would help her. HE LIED !!!!
    THE MEDICAL SYSTEM IS BROKEN!!!!!!!

    http://www.casey.senate.gov/newsroom/press/release/?id=054d3d92-905a-422a-ac5c-6244c0ac7e51

  • Daniel A. Kinderlehrer M.D.

    I am a physician who lived in Massachusetts for 25 years where WBUR was my favorite radio station.  I left Massachusetts after I and my 3 daughters all contracted Lyme disease.  I became personally aware of how inadequate the  treatments are for this potentially debilitating disorder by mainstream infectious disease doctors.  My medical practice at this time is devoted to treating people with tick borne disease.  

    The vast majority of my patients have seen dozens of doctors over several years and have been diagnosed with an assortment of labels such as Chronic Fatigue Syndrome, Fibromyalgia, autoimmune illness (particularly multiple sclerosis) or neuropsychiatric illness such as depression, anxiety and bipolar illness.  In fact, my patients are suffering from chronic Lyme disease generally complicated by co-infections that were also transmitted by tick bites (such as Babesia).  Only about 15% of these patients recall a tick bite or a bull’s eye rash.  These patients, who have been treated with any number of drug regimens by the numerous physicians with whom they have consulted, improve considerably with carefully directed antibiotic treatment.Dr. Drapkin is  correct that this area needs considerably more research.  He is  incorrect that there are no evidenced-based studies that have demonstrated the efficacy of long term antibiotics in this patient population–Dr. Cameron who was quoted in this piece authored one.  Dr. Drapkin is also incorrect when he states that a short course of antibiotics “eradicates” the infection–there are no studies that demonstrate this.  In fact, there are dozens of reports in peer-reviewed medical journals that have confirmed the presence of Lyme bacteria in both humans and animals even after aggressive and prolonged intravenous antibiotics. The 3 studies the Infectious Disease Society of America claim disprove the existence of chronic infection were either seriously flawed (Klempner) or misinterpreted (Krause, Fallon).My patients, who have suffered for years with chronic neurological and musculoskeletal complaints–such as fatigue, cognitive dysfunction, muscle and joint pains, headaches, insomnia and mood disorders–are happy to be anecdotes, because the antibiotic treatments they received have given them their lives back.  Somehow the multiple medications their previous doctors prescribed to treat their symptoms did not have the same placebo response.  I know they would exchange the small risks of prolonged antibiotic treatment for the benefit of feeling well again.I encourage people who live in the WBUR listening radius–a highly endemic area for Lyme disease–who are suffering from chronic complaints like the ones I listed, to seek consultation with a doctor who understands the complexity of chronic Lyme infections.  Referrals can be obtained from the Lyme Disease Association and the International Lyme and Associated Disease Society (ILADS). 

    Daniel A. Kinderlehrer M.D.

    • http://profile.yahoo.com/FMC567LV2V5THDC7AWDJZSZ3NM Alexander

      Dr. Kinderlehrer, I notice that you now live in Colorado and treat Lyme patients.  How common is Lyme disease in Colorado? 

      • Indygirl1

        Just reviewed this Doctor on vitals.com.  Not a favorable rating. 

        • http://www.facebook.com/matt.mcfaul.9 Matt McFaul

          that is because they harass doctors that treat lyme PROPERLY! Clearly you are one of those. Dr. Kinderlehrer sounds like a Lyme Literate Doctor, as opposed to the doctor in the radio bit. I am looking for a place to move that has an LLD, after I leave this comment I will hunt Dr. Kinderlehrer’s location in Colorado down and move there to seek treatment. He hit the nail on the head in every way as far as my case goes.

    • http://www.facebook.com/people/Jim-Grady/648029745 Jim Grady

      I was successfully treated by Dr Cameron. He’s a world class Physician

  • Hcwebster

    Dr. Drapkin,
    You stated that alot of people read about symptoms on the internet and decide that they have Lyme Disease based on the symptoms they read about.  I wanted you to know that most people with Lyme Disease see a multitude of mainstream doctors (like yourself) first and don’t get any treatment that works.  Finally after seeing 10-12 specialists for many years with no results, they go to an LLMD and get tested (or retested) for Lyme and co-infections and get on the right antibiotics for the period of time needed to cure their illness.   If you would acutally listen to all the ill people, you would know that they first went through their insurance.  They got treated for Lyme and then were referred to alot of specialists who had no idea how to treat them or diagnose what was causing the symptoms.  Or many people had a false negative test for 2-3 years before they finally tested positive and got treatment for one month and then were declared to not have it again!  My daughter went to 12 different specialists, all the best in our area and none had any answers or treatments that worked.  The only treatment that worked was the one received by a Lyme Literate MD who doesn’t followthe IDSA guidelines.  You shouldn’t ignore all the people getting well using a different treatment.   I guess you think we’re all crazy and getting better based on a placebo effect.  Well that’s a pretty big placebo effect and its alot bigger than the 13 patients that the IDSA based its treatment recommendations on. 

  • http://profile.yahoo.com/FMC567LV2V5THDC7AWDJZSZ3NM Alexander

    At the panel discussion Rep.
    Linsky pointed out the power of the so-called animal rights lobby which opposed
    decreasing the deer population to control Lyme disease. In 1930 there were
    300,000 deer in the US. Today there are 30 million. We have lost our rights. We
    can no longer enjoy nature, and we watch people fall one-by-one from Lyme
    disease. We are fencing ourselves in and dousing ourselves with potentially
    harmful pesticides.  Ticks from just one
    deer produce 450,000 tick eggs per season as reported at the panel discussion.
    No wonder Lyme disease is out of control. And these deer ticks carry other
    diseases as well. On Monhegan Island Maine, there was a Lyme epidemic but it
    was stopped by eliminating the deer. The deer lobby tries to blame the mice,
    but the adult ticks necessary to perpetuate the species will not feed on a
    rodent.

  • Joan of Arc

    Exposing the truth…WATCH parts 1,2,3, and 4!!! Thank You Jerry Leonard.

    http://www.youtube.com/watch?v=HEQ62i_CoYY&feature=youtube_gdata_player

  • http://TBIJournal.com/ JournalMgr

    This interview highlights the polarization that surrounds the discussion of Lyme and other tick born illnesses, with patients caught in the middle.  Many of us spend much of our lives trying to diagnosis ourselves (after 10-15 physicians have failed), determine if the treatment has effectively cleared the active infection, decide if a co-infection remains, identify setback triggers, or confirm we’re on the path to wellness.  tbijournal.com is a free confidential website for people who have been diagnosed with any of several TBIs, including Lyme. tbijournal.com assists patients who keep a daily journal of their symptoms and/or treatment with point and click journaling.  Journal entries can be easily converted to charts and calendars to patient self analysis or clinician discussion. Patient input on symptom and treatment option menus is encouraged.  The website is sponsored by a long term Lyme and Babesia patient.

  • Linda

    I, like many, did not start “looking” for answers until after my doctors told me they did not know what I have.
    All the specialists I went to tested me for everything and anything. All were ruled out. Western Blott test was done and I tested positive for Lyme and a co-infection. This test was run after a doctor assured me I did not have Lyme, he was sure. He had me tested for Lyme at different times over a 2 year time.
    Funny a NP and IDMD both said I was testing positive. Both reviewed all my tests and were impressed and assured me that all avenues have been covered.
    I have to admit that I have not been to any more then 5 doctors. I have done my own searching on the many different symptoms lists and there are many diseases or syndroms that I could have but I also made sure they were all ruled out.
    Lyme is new or young. There is much to learn and it will take years before questions are fully answered.
    Until the doctors, insurance companys and government all act together we may never have the answers.
    I’m just hoping that this happens before my grandchildren are my age. We live in an area where Lyme “whatever you want to call it” is on the rise and I’m afraid is here to stay.

    Keep chins up and moving forward. That’s all I can do because I don’t like the other options.

  • Hparm104

    ” But that does not necessarily imply that the bug is still there and that
    the problem is that the organism itself has not been eradicated.”

    Oh, imply! Such a technical research statement.  Dr. Mark Drapkin, have you ever had personal experience with  chronic Lyme or the treatment of Lyme? I hope not.

     ”You don’t get it until you get it”! Barbara MacLeod

  • Joan

    Dr. Mark Drapkin  claims there is not enough scientific  information available to know if chronic Lyme exists.  But through the interview process, it is apparent that he has all ready decided.   I would never hire this doctor…  or fund him for research.    

    Shame on Newton-Wellesley Hospital and  Tufts University.

    Do you have anyone else to interview?

  • http://www.facebook.com/bob.blackburn.37 Bob Blackburn

    DR. Drapkin Please explain the recent studies such as The Ember’s study, and Dr Sapi’s work on biofilms. Also why is the accepted treatment for Whipple’s disease (another systemic bacterial infection) up to 2 years of ABX with relapses common?

  • http://www.facebook.com/matt.mcfaul.9 Matt McFaul

    I would like to hear the doctor’s opinion on the denial of the existence of Lyme biofilms. Why does the board ignore the doctor that demonstrated the existence of biofilms in the documentary “Under Our Skin” (free on hulu.com)?

  • http://www.facebook.com/sweeny.kim.5 Sweeny Kim

    6 months later, a new tick-borne disease discovered which may hold “clues” to why some patients with Lyme-like symptoms test negative for Lyme. Clearly this is a virulent & clever bacteria that can swap DNA, evade the immune response & not be so easy to eradicate. Scientific proof positive from academic MDs that the Academic hospital, CDC & ISDA guidlines are outdated and need to be updated.

    http://www.wcvb.com/health/New-tick-borne-disease-discovered/-/9848730/18163128/-/91btk1z/-/index.html#ixzz2IHgNCWd7

  • david skidmore

    Dr. Mark Drapkin, some congressmen and women, senators, attorney Generals, and private researchers are catching up to you guy’s!…they came very close in the Ct. investigation. It’s only a matter of time at which point any and every person suffering this devastating disease will finally be taken care of and cared for with the dignity and humanity that we all deserve! I am a husband and father of two who like many has some severe neurological disfunction…this after a couple of years of antibiotic regiments, and the symptoms are only getting worse!!…post Lyme!?…I don’t think so Dr. Drapkin.

Most Popular