WBUR

A Long, Painful Battle With Lyme Disease

Part of a special WBUR series

Barbara MacLeod at her home in Kittery Point, Maine (Jesse Costa/WBUR)

Barbara MacLeod at her home in Kittery Point, Maine (Jesse Costa/WBUR)

Barbara MacLeod, a former anchor and reporter for New England Cable News, has lived with Lyme disease and the damage it causes since 1988. Her journey has been harrowing and painful. She shares it with us.

Barbara MacLeod: So it all started when I was about 25 years old. And I started suffering from strange symptoms: pain, fatigue, stuff I couldn’t put my finger on. I was having trouble sitting, and I was having shoulder problems that would wake me up at night, every night. And I had just taken a job as an anchor, the main anchor, at a small cable station on Cape Cod, called Cape 11.

I had been there for about a year when I started having all these health problems. I would go to these doctors to try to figure out what the specific symptoms were. For my shoulder pain I was going to an orthopedic person, who would look at my shoulders and thought maybe it was overuse from tennis or racquetball, so maybe I had some type of arthritis with the knee pain; I had a bad knee from ski-racing.

And so my aunt, who lived in Lyme, Conn., she would say to me, every year when she would see me, “You’ve got Lyme disease, you have Lyme disease.” And she had Lyme disease and what happens is, whenever anybody has Lyme disease they then think everybody else has it. So I didn’t discount it, but I would always mention it to the doctors, that I thought that I might have Lyme disease, but nobody seemed to take it seriously. I did have one blood test done that came back negative, and then it was just on this path of “You don’t have Lyme disease.” So it was, “What do you have?”

“I would always mention it to the doctors, that I thought that I might have Lyme disease, but nobody seemed to take it seriously.”

Nancy MacLeod (mother): As parents, you hate to see your kids — something getting in the way of them getting what they want and what they’re capable of doing.

John MacLeod (father): Oh, it was just, it was a shame, that a good athlete and a healthy lady was just struggling.

Barbara MacLeod: I finally went to this really well-known specialist, orthopedic specialist, at New England Baptist [Hospital], and he was a lovely guy, and he told me that he thought I had iliotibial band syndrome, and bursitis, and so he would give me shots of cortisone, and he said, “If these improve your condition, if you’re feeling much better, then this is probably what it is.” I did improve, and so he said, “OK, well, we will do this bilateral hip surgery.” So he took out my bursa sacs and cut holes in my iliotibial bands in both hips.

I was so hopeful that this was going to cure me, and he had indicated that he thought that that was really what the problem was, and he was such a renowned doctor. I always said all along, “I’m afraid I have Lyme disease, I think that’s what I have,” but he discounted it.

John MacLeod: And the next day, when we went and visited, and the tears are streaming down your face, and after two five-inch scars on each hip, and you saying, “The pain’s still there.” So that was, that was heartrending. Terrible.

Barbara MacLeod: And then I basically became a cortisone addict, and it always helped. And so every three months I would get these massive doses of cortisone. This literally went on for six, seven years. At this point, I knew I was getting worse. I was having all kinds of bizarre symptoms. I wouldn’t even tell the doctors half of them because I sounded like such a psycho, between light sensitivity and ringing in my ears and just pain, migrating pain through my wrists, knees, shoulders and hips, and I started this new job at NECN that I loved.

I went from working five days a week to three days a week. But it was the days after working that I would pretty much fall apart at home. I was just at the end of my rope. At NECN I then started to see if I could anchor more, so that I could work off hours.

When I would drive on [Route] 128 — and this is just horrible — but I used to put my legs up on the dashboard and put it on cruise control. And if I was working off hours, it wasn’t that bad, there weren’t many people on the road, but that’s basically how I did my commute. And it’s really amazing that I didn’t kill anybody, or myself. But I would have these visions of like, “Oh my God, if I just pull over, and smash into this tree, then this is all going to be done, and I won’t have to feel this way anymore.” And that’s when I thought, like, I need some serious help here. So I went to this pain clinic in New York, and I literally couldn’t stop crying. I was really low and I felt like they were my last hope.

Beth Kidwell, editor at NECN, with MacLeod at a Gracie Awards ceremony in New York. (Courtesy)

And I remember, like, having it out with them and then they finally listened. I showed them all my research, that I thought that there was something systemic, that it wasn’t just myofascial pain syndrome or a back problem or this or that, and they sent me to a good doctor in New York, who sent my blood work to Stony Brook Lab, where they did more thorough blood tests for Lyme, and within a day, two days later, it came back positive, and I thought that was going to be the beginning of the end, but really it just ended up being the beginning of the next phase.

I started going to Lyme conferences to try and find out who were the best doctors. And of course I found out but then I couldn’t get in to see them, because they were completely booked. And so I found this one doctor, her name was Dr. Fine, and she was in New Jersey, so I started having to travel to New Jersey for my doctor appointments. But she did a thorough workup, which showed liver damage, heart block. We did a brain SPECT scan and an MRI which showed significant, you know, neurological damage from Lyme disease. And then we started the whole antibiotic protocol of IV antibiotics. So I would have, I had a pick line put in, and had a drip of antibiotics that I would have to do.

Beth Kidwell (longtime Cape 11, NECN co-worker): You walked around the newsroom like a hospital ward with your pole with the bag hanging down.

I also remember trying to look for you, and no one knew where you were, and I went into the conference room and you were laying on the floor, with a pillow, with the IV pull there, and that’s what you had to do to just get through an eight-hour shift, to take those breaks and lay down flat because you couldn’t sit. You were pretty much almost a cripple at that point.

Barbara MacLeod: I remember a few times at work … the neurological symptoms being pretty intense. And I remember a snowstorm and being at Logan Airport, and just talking about the snow conditions there and if the airport was shut down or not. And I could not come up with the word for “runway.” And I’m saying, “Well, the, um, that stretch that the planes go down is closed,” and then I hear a producer saying, “Are you talking about the runway?” in my ear. I’m like, “Yes, the runway.” I just felt like I was crazy.

Kristi Mathieson (friend): And you were also seriously considering having a family at the time. But you were also concerned whether or not the baby would be impacted in any way, shape or form.

Barbara MacLeod: The information I was getting from the Lyme specialists at that point was that that was quite possible, that Lyme can be passed through the placenta and that I should take that seriously. And I figured, at that point, with my luck, it would be just my luck, to then have a baby with birth defects because of Lyme disease.

So, I really wanted to have a baby, my husband really wanted to have a baby. And I went through this process of trying to find a gestational carrier. And this was way before — this was when there was Baby M and the surrogacy thing going on, but nobody else, really, was talking about it. It wasn’t common knowledge like it is now. I remember just one day just typing up an ad that I put in the paper. It said, “Womb Wanted.” I mean it’s really like, like a chapter out of a bad book but I put in the ad in a couple newspapers in New Hampshire and I got some response. The embryos didn’t take, which ultimately was a good thing because it probably wasn’t a good match, but it was very time-consuming, expensive to try to draw up a contract and to figure it all out and to go through the IVF cycles myself while I’m still undergoing antibiotic therapy and still working. I mean it was just an insane time.

Kristi Mathieson: When you’re sick, you need somebody to help you. It’s the time that you need it the most.

Barbara MacLeod with twin sons Rory, right, and Lane (Jesse Costa/WBUR)

Barbara MacLeod with twin sons Rory, right, and Lane (Jesse Costa/WBUR)

Barbara MacLeod: I had heard about how Flagyl worked for some people with long-term Lyme, and so I got another doctor to prescribe the antibiotic Flagyl for me and I went on Flagyl for three months. And that was when things turned for me. I got significantly better on the Flagyl and then I thought, “Whoa, OK, maybe I can try to get pregnant myself. And I did. So I had Ben, and then a couple years later I did IVF and I had twins. I was still working my two days a week, and now I had three kids, and I still had a lot of pain problems but I was much better, because when I would have these Lyme flare-ups, I would just go on the Flagyl and it would help.

All three of my children have been treated for Lyme — pulled ticks off them, they had the rashes and the fevers, so it was very clear and caught early on. My now-ex-husband, treated for Lyme disease. My mom, still being treated for Lyme disease.

OK, so I’m in my office now, in Kittery Point, and I’m going through some big boxes and files of old medical stuff, to try and jog my memory. One of them is a letter to my doctor in New Jersey and it’s dated Aug. 11, 1998.

“End of March was bad,” I write. “Ringing in ears, low energy, fatigue, right wrist sore, both shoulders painful, brain fog, trouble articulating.” I write: “By the end of March, my knees, shoulders were improving, some jaw, memory problems.” And this goes on and on.

It’s hard to pinpoint what it is that makes me so sad when I read this. I guess I’ve been pretty good about looking forward and not looking back with all of this and it just called it all up. All the, just the uncertainty and physical and mental pain of it all. It makes me angry and I know a lot of people are going through what I went through. And I definitely felt very alone during that time and at a loss of how to get better.

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. And so they, they do their research and start figuring it out.

If you go to one of those other doctors, when in fact you do have long-term Lyme, or untreated Lyme, or misdiagnosed Lyme, it could be years and years before you figure things out.

This story was produced by WBUR’s Martha Little.

Update: See here for reaction to MacLeod’s experience, and to read about the ongoing debate over whether Lyme disease can be a chronic illness.

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  • Alexander Davis

    Public health officials have downplayed the dangers of the Lyme disease
    epidemic whose size is grossly underestimated. Even the CDC estimates there are
    ten times more infections than reported. Lyme disease is represented as being
    easy to spot and cure.  Yet most
    infections are transmitted by the minute poppy-seed-sized nymphs which are
    usually missed.  Similarly, most victims
    never notice the rash, which is often not the advertised bulls-eye.  Thus many cases are undiagnosed and progress
    to chronic illness.  Meanwhile the
    emphasis has been on denying the existence of chronic Lyme disease.  The most famous denier Dr. Allen Steere has
    had death threats made against him by irate Lyme victims. Currently the CDC
    reports that 20% of patients treated with antibiotics can go on to develop
    symptoms (joints, brain, heart, etc.) anyway. In fact, Dr. Steere is now
    studying antibiotic-refractory Lyme disease at the MGH. 

  • Marx66926

    There may be a cure coming, try to learn more in the “trial of Programmable Pluripotent Cells of Monocyte Origin for neurodegenerative diseases”. Research on Dr Fandrich of Germany.

  • Korin Zigler

    Thank you for producing this series!  I’ve seen the sequelae of Lyme Disease on my job as a cardiac nurse (complete heart block in a 27 year old!), and I’ve had Lyme myself, which was diagnosed early and treated appropriately.  This disease is ubiquitous in our area, and the public is well-served by your reporting, as the disease is both vague and widely misunderstood.  Thank you.

  • AmyF

    Dr. Allen Steere discovered and named Lyme disease. He has dedicated his life to studying the disease and its effects. I’d hardly term him a “denier”. 

    • http://profile.yahoo.com/TFYZ6DOVUE2GDCVIWTVE2WVKIU Amy

      Then you should watch Under Our Skin, You may find it interesting.

  • Mkb822

    It took three blood tests to prove I had Lyme, and once you get it you will always test positive for it, so if symptoms return you need to get back on the Doxycycline or other treatment.
    This is awful, I feel she had to go through so much to get doctors to listen to her.

  • R. M.

    So if I had Lyme several years ago and took a round of antibiotics a month into it…and since then I’ve been battling constant brain fog and migraines…that I could still have it?

    • Dr_Alex

       If dose and length was appropriate as in guidelines, you should be fine

      • Anon

        What on earth is your definition of fine?!?! This poster is describing serious symptoms!

      • Kaylenemickey

         The guidelines need to be updated and corrected.

    • Kaylenemickey

       It’s possible you could have gotten a co-infection such as Babesia. It affects your head and neck area. I was put on Malarone and FIVE days later my brain fog disappeared and  has not returned. I’m not saying this is what is wrong with you, but it is something to be considered. Good luck!

  • anon

    thank you, thank you for running this series.  I’ve been diagnosed with CNS lyme disease, had IV antibiotics, and still have symptoms.  My case seems to mystify doctors, but I can’t understand why when there are so many stories like this out there.  I have spent years feeling crazy!

  • anon

    Please WBUR, discuss the lyme disease vaccine that was pulled off the market for financial reasons!

    • Nancy

      The vaccine was recalled because it was unsafe.  Symptoms of Lyme were occurring in a disturbing number of those vaccinated, and the FDA finally took action.  SmithKline Beecham then peddled it to the veterinary community, and many vets now see more Lyme disease in dogs that have been vaccinated than in those that have not.

      • anon

        Yes, there is controversy surrounding the vaccine.  However, from the CDC website:

        The vaccine for Lyme disease is no longer available. It was discontinued by the manufacturer in 2002, citing low demand.  

    • Careyg

      Your wish will be granted tomorrow in a report by Curt Nickisch!

  • SV

    No. No. NO.  This is NOT Lyme disease.   Just because someone has a ‘positive’ test for Lyme does NOT mean that someone HAS Lyme disease.  It means that they have been exposed to the bacterium at some point in the past.  But not everyone who has had exposure has the disease.  This poor woman’s symptoms are NOT symptoms of Lyme.  They are, like fibromyalgia, chronic fatigue syndrome, and irritable bowel syndrome, symptoms of poorly understood syndromes whose causes(s) are not clear.

    The Lyme disease syndrome is well defined and this is not it.  ‘Chronic Lyme disease’ has never been proven to have any association with the Lyme bacterium – in fact multiple studies show that it does not.  The ‘small group of doctors who are doing the majority of the good work’ are treating an  illness of unclear cause in ways that have never been shown to be effective and expose patients to possible harm: chronic use of antibiotics is not something to be taken lightly.

    When I heard that WBUR was going to do this series I was very worried that this was what was going to happen.  And here it is.  You have done your listeners and readers a disservice by perpetuating the myth that ‘chronic lyme disease’ has anything to do with the Lyme bacterium.  You have fallen for the trap of believing that someone has a disease just because they say they do.

    I have sympathy for Ms. MacLeod and wish her all the best.  I hope she finds a way to deal with her illness.  But she does not have Lyme disease.

    • Aimee

      And you are qualified to say this because…

    • Guest

      I agree.  I don’t discount this woman’s terrible suffering, nor do I discount the possibility that she may have benefited to some extent from antibiotics (antibiotics have many ill-defined effects).  I also readily admit that there are problems with how Lyme disease is defined and diagnosed.  However, to present her case in this fashion, without presenting the huge surrounding controversy about chronic Lyme infection, is extremely irresponsible.

    • another victim

      and which IDSA representative is this?  Standard answer, lyme doesn’t do these things  but Fibromyalgia does…so just what causes Fibromyalgia and why is mine gone since the Lyme (late stage) has been treated?  The CDC site, among others, admits late stage lyme can cause serious problems.  Antibiotics are chronically used for acne…same one as a matter of fact but you flinch when someone might be given a few weeks of ABX after a tic bite which just might prevent a lifetime of complications.

      • Kaylenemickey

         My doc believes that Fibromyalgia is a ‘catch-all’ diagnosis when they don’t know what is wrong with you. Why do docs believe that Fibromyalgia exists and they don’t believe Lyme exists?? I was told for years I had Fibromyalgia and yet when I was treated for Lyme the ‘Fibromyalgia’ disappeared. I’m not so sure that Fibromyalgia exists, but I DO know Lyme exists!

    • Kaylenemickey

       I was diagnosed with all of the above plus panic disorder and osteoarthritis for 20 years. I just kept getting sicker and sicker until last year I started treatment for Chronic Lyme Disease. I now have very little pain, no brain fog, no inflammation, no panic attacks, I can think clearly and the list goes on. No doctor (and I went to many of them) could ever understand why I was so sick. I am SO thankful for this doc I found who started treating me a year ago. I take oral antibiotics, herbs, supplements, vitamins and follow a special diet. It is all geared for Lyme and Babesia due to my clinical symptoms the fact that my C4a blood test was extremely high and my CD 57 count was extremely low. Other blood tests were negative. I grew up in Arizona and now live in New Mexico and I do have Chronic Lyme Disease. I asked one rheumatologist 2 years ago to test me for Lyme and she refused because I don’t live back east. Well, the news flash is: It’s everywhere.

  • shazdancer

    AmyF, Dr. Steere denies that there is such a thing as chronic, persistent Lyme infection. He has quite recently (recklessly, in my opinion) stated that Lyme can go away on its own. He has spent decades studying treatment-refractory arthritis resulting from Lyme disease, but denies it is active Lyme. One of his associates (Bockenstedt) recently described Lyme antigens surviving next to arthritic joints, and a different researcher (Embers) has noted persistent infection in Rhesus macaques. While they struggle to put the science together, the patients still suffer. 

  • sumajo

    I want to emphasize what a previous poster mentioned.  The rash from Lyme is not always “the telltale bullseye” rash.  I had trouble getting my doctor to believe I had Lyme, as I hadn’t seen any tick, tested negative, and my rash was atypical (in fact I started developing multiple, separate rashes).  I knew it was likely Lyme because my husband and neighbors had been diagnosed with it.  To his credit, my doctor called in a dermatologist to consult, and I remember his words to my doctor:  ”Lyme can look like anything.”  He advised to treat for Lyme, and a subsequent titer proved positive.

    I knew untreated Lyme could be life-changing, which is why I pushed for a correct diagnosis. It pains me to read what Barbara has been through.  

  • David H 56180

    As I heard this Lyme disease series, I was going to say the last phrase of this story. Doctors need to be educated. It took 8 months that I have a Lyme disease after visiting many doctors.

    • Dr_Alex

       Patients need to be educated about facts and a lot of fiction in the subject.

  • Jen

    It is my understanding that the current theory about chronic Lyme is that a percentage of the population, when infected with Lyme, undergoes an autoimmune response, as some of the proteins on the bacteria are similar to proteins on healthy cells. So when the immune system goes to fight the infection, it also attacks the healthy cells and creates the chronic Lyme syndrome – which is why the symptoms persist long after the bacteria are gone.

    • Dr_Alex

       There is no any scientific confirmation of sustained autoimmune response

      • Jen

        http://jem.rupress.org/content/203/4/961.full
        From our friend Dr. Steere. Antibiotic-refractory is key here, as we can’t blame the effects on the bacteria. But we do see a connection between the HLA-DR subtype and lingering effects…sounds like a possible autoimmune reaction to me.

  • Boat58

    Continuing the theme of misdiagnosis / failure to diagnose:  I has Lyme disease about 12 years ago when I was a teenager.  After having paralyzing abdominal pains for a week and faced with a confused primary care physician (who didn’t pay much attention to the text-book bulls-eye targets on my from the tick bites), I went to to one of New England top hospitals.  They had me chug barium (that chalky nasty ‘milkshake’) for gasto-imaging and undergo a series of tests, but found nothing and eventually decided I must be psychotic (an odd conclusion, still don’t understand it).  The doctors refused to acknowledge that I might have Lyme disease, and my condition progressively got worse after spending a week in the hospital and most of the summer writhing on my couch at home.  The pain was continuous and half of my face became temporarily paralyzed. 

    Eventually a new primary care physician thankfully diagnosed me with Lyme disease, game me antibiotics, and the impact was almost instant. Within days I was walking around, and I was all better within a couple of weeks.  

    What I still don’t understand is what seemed like such resistance in the medical community to look at the basic indicators of Lyme disease and just err on the side of caution to prescribe antibiotics.

  • Rick

    Controversial or not, what this reporter indicated is that the correct diagnosis of Lyme Disease and its related symptoms is critical. The same thing happened to me, and fortunately, while my journey to recovery from long-term Lyme Disease symptoms is still going on, I AM recovering thanks to long-term antibiotics, including Flagyl.  I thank an ENT who I went to see for phantom sinusitis for requesting a blood test, which led to more specific tests, and confirmed my exposure to B. burgendorferi (spyrochete that causes Lyme.) I may not have an active case now, but I have the symptoms. Flagyl and combo therapy with two other common antibiotics are truly helping resolve the symptoms. I have returned to work and resume my life — thanks to early diagnosis and doctors willing to help me, despite the controversy to the contrary.

  • rgb

    Back in the 70s and 80s, living in the suburbs near CT, my mom lived and died knowing she suffered from Lupus (a painful autoimmune condition – attacking healthy cells – that manifests differently for different individuals and persists confusingly in the manner of “flare-ups” and “remissions”).
    A few years back I experienced excruciating pain all over particularly in the joints. The pain came on rapidly intensifying over the course of a couple of weeks. I remember thinking (with new found compassion and understanding), “This must be what my mother felt like everyday.” I started down a similar path as Barbara MacLeod’s, of misdiagnosis and discrediting. Fortunately two weeks in, and without a confirming test, my doctor’s office (very fortunately) put me on an antibiotic for Lyme. Like a miracle the pain lifted …. 
    Another doctor, another set of medical standards or opinions and my story may have turned out differently. Reading Ms. MacLeod’s description of her experience leads me to consider the possibility that my mother’s confusing illness could have been initiated by an tick carrying the Lyme bacterium. (B. burgendorferi) … Despite the murky symptoms in both Barbara’s and my mother’s case, one course of antibiotic early on can’t be that bad a procedure for the medical establishment to consider…. ?

    • http://pulse.yahoo.com/_LLH7SFRBBDZ54YLFVP6POB6XAI ANNA

       I agree, rgb. Lyme disease is easily treatable if it is caught early. Why the hesitancy to prescribe an antibiotic? Overuse of them and the fear of antibiotic-resistance is understandable but not applicable in this one instance. It’s a one- time course of treatment.
      I pulled a tick off of me 15 years ago and began to feel terrible within 48 hours. Two doctors told me that since I didn’t have the bullseye rash and had a negative Lyme titre that it couldn’t be Lyme disease. By 6 weeks and no improvement, I demanded antibiotics and was reluctantly given the prescription: Doxycycline for 1 month. The symptoms cleared up and I’ve been fine since.
      There is something else going on here with the medical establishments denial and refusal to treat Lyme disease in a timely manner. What is it? I don’t know, but I would like to find out.

      • Guest

        The problem is not the one-time course of treatment.  Most providers are willing to take that gamble, and I’m sorry that yours was not.  The problem is that many people (such as some of the responders here) that believe many many months of IV antibiotics are necessary to eradicate the bacteria, something that has not been borne out in clinical trials.  That is where all the controversy lies.

        • http://pulse.yahoo.com/_LLH7SFRBBDZ54YLFVP6POB6XAI ANNA

           Guest, I’m really surprised you don’t recognize that all, every single one, of the untreated cases started out as mine did. If most providers were willing to take ‘that gamble’ and prescribe a simple course of anti-biotics, we wouldn’t be having this discussion and we wouldn’t be having the ensuing controversy of how to treat this when it goes untreated.

          Think of this: If everyone that presented with the symptoms of Lyme was treated, and then, the ones that did not improve could move on to further diagnosis, wouldn’t that make more sense than what’s happening now?

        • http://profile.yahoo.com/TFYZ6DOVUE2GDCVIWTVE2WVKIU Amy

          Part of the problem is that MOST are not willing to gamble!!!  As to the  months of IV antibiotics, I am not sure if there are still bacteria left to kill, I have been on antibiotic for over 2 years, I an 75 % better, is it worth the risk to give them a try…If it means never feeling like I did, YES!!!  I at least want the option to make that choice for myself!!!  

      • http://www.facebook.com/laura.napier.77 Laura Napier

        I totally agree with you Anna. However most of us diagnosed with Lyme, even some who caught it early did not get better with the standard antibiotic protocol for Lyme and many are still suffering with what they call “Post Lyme Syndrome,.” Just go to the CDC’s website and read up on Lyme Disease and anyone remotely educated about Lyme Disease can see that most of the information is a joke. Not accurate, reliable or truthful, not to mention a complete lack of common sense. How probable is it that the person now has some type of “auto immune disease” rather than the fact that the bacteria hasn’t been eradicated from the body. Let’s just jump from A to Z rather than going from A to B, that makes more sense!!!? I’m happy to hear that someone has actually recovered after standard protocol with antibiotic treatment. Most of us are not so lucky. I have been battling this disease for two years. I tested positive twice, with co-infections. I’m currently seeing an Integrated medicine specialist who is an LLMD as well. Thank God I found her. I was sure I would be dead before they figured out what was wrong with me. Still fighting the good fight. I lost my business, almost lost my 4 kids, due to this disease. My now 4 children and husband are also sick. I also live in a dry desert state where doctors swear that there is no Lyme Disease. People wake up! It’s everywhere (hello, there are animals everywhere).It’s not a conspiracy theory or in are heads, it is the harsh, cold and brutal reality and those of us with this God forsaken disease live with on a daily basis. And I couldn’t agree more, I don’t understand why the hush-hush on Lyme Disease from the medical community. The jig’s up. Time for the government and the medical community to wake up and smell the spirochetes! My heart goes out to everyone suffering with this disease…Godspeed.

  • Alexander Davis

    Pamela Weintraub in her book Cure
    Unknown reports how Allen Steere claimed that only a fraction of those
    diagnosed with Lyme disease actually had the disease, and he manipulated the
    Lyme blood test so that it excluded many of the disease sufferers.   Edie Clark in her article “Lyme Disease: One
    Woman’s Journey” (Yankee Magazine
    July 2007) notes that following death threats, Steere had refused to make
    public appearances without security guards. 
    The point here is that Lyme disease is missed so frequently that people often
    progress to the horrific chronic stage.  Some
    of these patients may still be treated for infection, but others now have
    chronic tissue damage and often an autoimmune disease.  Because the blood test excluded so many victims,
    no one knows how many there are. Therefore when the vaccine was tried, those
    who already had an autoimmune reaction could get worse.  

     

  • Dr_Alex

    This is so unfortunate that WBUR aired this program as it is. This is reporting at it worst. Mrs Martha Little produced the program without checking actual scientific facts. I would refer you to the article in Lancet (please, see abstract).
    The Lancet Infectious Diseases -

    Volume 11, Issue 9 (September 2011)
    Antiscience and ethical concerns associated with advocacy of Lyme disease
    Paul G Auwaerter, Johan S Bakken, Raymond J Dattwyler, J Stephen Dumler, John J Halperin, Edward McSweegan, Robert B Nadelman, Susan O’Connell, Eugene D Shapiro, Sunil K Sood, Allen C Steere, Arthur Weinstein, Gary P Wormser
    Advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefi ts of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments. Some activists portray Lyme disease, a geographically limited tick-borne infection, as a disease
    that is insidious, ubiquitous, difficult to diagnose, and almost incurable; they also propose that the disease causes mainly non-specific symptoms that can be treated only with long-term antibiotics and other unorthodox and unvalidated treatments. Similar to other antiscience groups, these advocates have created a pseudoscientific  and alternative selection of practitioners, research, and publications and have coordinated public protests, accused
    opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science. The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health.

    • guest

      Agreed.  While it sounds like there will be some rebuttal information aired tomorrow, it was irresponsible for WBUR to air such a lopsided segment in isolation. 

    • Alexander Davis

      Authors of this article are the ones who have denied the fact that Lyme disease victims who were never properly diagnosed or treated do go on to develop horrific chronic symptoms.   Over and over it turns out that when properly diagnosed and treated they can often recover.  Like syphilis, another spirochete disease, Lyme is the great imitator.  

      • Dr_Alex

         I am glad that all the authors of the article are known by the responder. Lyme disease can cause chronic symptoms if not diagnosed (which is rare in the practice). Over and over again had been shown that testing and treatment by IDSA guidelines provide cure for well known infectious disease.
        Spirochetes are different… For some reason nobody tries to find if they have undiagnosed treponema pallidum infection…

    • sumajo

      Personally, I don’t think this comment contributes much to the discussion.  The abstract doesn’t begin to get to the nuts and bolts of the issues that are contended, and unless one has a Lancet subscription it costs over $30 just to read the article.  People new to this controversy may be interested to read the NYTimes article “Stalking Dr. Steere Over Lyme Disease”. http://www.nytimes.com/2001/06/17/magazine/17LYMEDISEASE.html?pagewanted=all

      I don’t understand how this becomes such a virulent black and white issue for people.  If I understand correctly, Dr. Steere and others are worried about false diagnoses and overuse of antibiotics, which seem very legitimate concerns if that’s what’s happening.   On the other hand, the NYTimes article mentions “a growing number of patient advocacy groups, practitioners and
      psychiatrists who argued that [Lyme disease] had become a full-scale
      epidemic, a modern-day plague crippling thousands of Americans.”  Dr. Steere is apparently painfully aware of this group of people, and perhaps Dr_Alex is as well.  But I am a person who had Lyme and had trouble getting my doctor to diagnose it (he actually said to me, “I know you want to have Lyme, but you don’t”).  And clearly there are many others who have trouble getting it diagnosed correctly when they have it.  That’s not to suggest that there isn’t a large “advocacy” group out there… apparently one reality doesn’t negate the other.  There may be people being improperly treated with antibiotics and those who are irrational on the subject of Lyme, but that doesn’t mean that there aren’t also people are risk for untreated Lyme disease and its consequences (however people may dispute what those consequences are).

      By the way, I first heard of Dr. Steere when he diagnosed my neighbor with Lyme a few years ago.

    • Manduhai

       Assertion is not scientific proof whether it is made by a doctor or non-doctor.  People who are interested in the science of Lyme should check out the web site of the Columbia Center for Lyme and Tick Borne Disease.  Since a team of researchers has been doing the research that will resolve the many disputes over Lyme.  The science is not resolved but it is definitely not running in the direction of the Lyme denying doctors.  The web site has places that summarize the results of the latest research and Colombia and elsewhere.  It is an invaluable source for people trying to understand Lyme scientifically.

      • Dr_Alex

        Data on the website is interesting, but so far there is no proof that phenomena you seen in mice can be observed in humans. I understand there are very few difference points between humans and mice, may be this is one of them.

      • Careyg

        Thank you! Will add it to our resource list…

    • guest

      Doctors with attitudes such as yours pose the threat to public health. I was fortunate to find doc to look past their pride and try to actually figure out what was wrong medically with me and to treat me with long term antibiotics and IV antibiotics until I was well enough to function again. 
      God forbid you end up with something that hasn’t been scientific proven yet have to deal with narrow minded docs that are more interested in protecting their own financial interests then taking a chance on figuring out the growing actual health issue.
      I’m sure you are still operating on the scientific fact that the world is flat…

      • Dr_Alex

        Thank you for eloquent response, with all due respect I disagree. Antibiotics have other modes of action such as immunomodulators, metalloproteinase inhibitors etc.
        We can believe in Buddah, Lyme, creationism, miracles, whatever.
        Science deals with facts.

  • Alexander Davis

    Lyme disease is out of control because it is the perfect storm.  First it was portrayed as easy to diagnose
    and cure.  However, most cases are missed
    since most people don’t see the tick or the rash.  Then antibiotics have been refused even for
    symptomatic people in Lyme-ridden areas. Early treatment is key, but criteria
    for diagnosis have been overly exclusive; blood tests take a long time and are
    unreliable. Insurance companies have been reluctant to pay for
    antibiotics.  Meanwhile 20% of treated
    patients can go on to develop chronic symptoms. So-called Lyme experts have
    denied these symptoms, much to the delight of the insurance companies. . The
    newspapers have been under pressure not to publicize the disease since
    advertisers don’t want real estate values to decline. The disease appeared
    along with an overpopulation of deer, and therefore an overpopulation of deer
    ticks, but the deer-huggers have mounted a massive campaign to divert blame to
    the mouse. Breaking the tick cycle by targeting the deer has been shown to be
    effective since the adult egg-laying tick feeds 90% on deer and will not feed
    on a rodent.  Mice are a source of the
    Lyme bacteria and the tick larvae which infect us, but without eggs from adult
    ticks there are no tick larvae.  Public
    health officials say that this is a wildlife management issue, and the wildlife
    people say it’s a public health issue. 
    The perfect storm.   

  • Alexander Davis

    Lyme disease is out of control because it is the perfect storm.  First it was portrayed as easy to diagnose
    and cure.  However, most cases are missed
    since most people don’t see the tick or the rash.  Then antibiotics have been refused even for
    symptomatic people in Lyme-ridden areas. Early treatment is key, but criteria
    for diagnosis have been overly exclusive; blood tests take a long time and are
    unreliable. Insurance companies have been reluctant to pay for
    antibiotics.  Meanwhile 20% of treated
    patients can go on to develop chronic symptoms. So-called Lyme experts have
    denied these symptoms, much to the delight of the insurance companies. . The
    newspapers have been under pressure not to publicize the disease since
    advertisers don’t want real estate values to decline. The disease appeared
    along with an overpopulation of deer, and therefore an overpopulation of deer
    ticks, but the deer-huggers have mounted a massive campaign to divert blame to
    the mouse. Breaking the tick cycle by targeting the deer has been shown to be
    effective since the adult egg-laying tick feeds 90% on deer and will not feed
    on a rodent.  Mice are a source of the
    Lyme bacteria and the tick larvae which infect us, but without eggs from adult
    ticks there are no tick larvae.  Public
    health officials say that this is a wildlife management issue, and the wildlife
    people say it’s a public health issue. 
    The perfect storm.   

  • http://chroniclymelookslike.wordpress.com/ Wendy Thomas

    At this point, Lyme disease should be called “Lyme Complex” it’s not just the Lyme spirochete that is causing great damage but also the co-infections that go along with it. 

    If you’re not terrified of Lyme disease, you’re simply not paying attention. 

    • Dr_Alex

       There are two other tick-borne diseases which can be transmitted by deer tick irrespectively to Lyme, just by chance. Claims of other related infections are not confirmed scientifically and therefore irrelevant.

      • http://chroniclymelookslike.wordpress.com/ Wendy Thomas

        They are hardly irrelevant, they are, as you so simply put, just not confirmed by science. (really? we must read different sources) 

        Just because until recently we didn’t  know about the Higgs Boson didn’t mean that it didn’t exist. It means that we didn’t have the technology until now (presumably, I may be jumping the gun here) to find it. 

        I personally find your crippling reliance on Science alone to treat patients (if in fact you are a physician and not just a troll on this board which I suspect because you seem to be enjoying refuting Lyme with your claims of “show me the science” just a little too much if you know what I mean) to be troublesome at best and borderline irresponsible at worst. 

        • Dr_Alex

           Thank you for putting me only borderline irresponsible to my patients who are treated according to the best science can provide, I can assure you they would disagree with you.
          Higgs Boson analogy is irrelevant, since it did not become a point of “controversy” before it was discovered.
          Probably we have different sources (there are other ones than Google).
          It is your choice to refute science, you may try voodoo, Holy Water, walking barefooted etc.

          • http://chroniclymelookslike.wordpress.com/ Wendy Thomas

            In calling any point or argument that refutes or challenges your stance “irrelevant” you are taking a cheap and childish shot. It leaves me with the feeling that you may not understand the meaning of that word.  

            While your patients may disagree with me, I disagree whole heartedly with you, which is why I am not now nor ever will be a patient of such a narrow minded physician. 

          • Dr_Alex

            Thank you

          • http://chroniclymelookslike.wordpress.com/ Wendy Thomas

            I’m going to give you the benefit of the doubt. From your spelling and grammatical mistakes, English may  not be your primary language which may mean that a cultural difference may account for your statements. (your incredible intolerance and flippant remarks about other people’s belief systems for example damning Holy Water, Voodoo) 

            I’m also going to go out on a limb and say that you are probably young (the fact that you can’t control your temper and snipe at people who challenge you is a big give-away.) 

            Do your patients a favor and settle down little grasshopper, got news for you, you don’t know it all. Neither does your precious “Science.” Oh, we know a little bit more each day, that’s for sure, but to claim to have all the answers now shows an incredible amount of arrogance that is not conducive to learning new ideas and helping those who really need help. 

          • http://profile.yahoo.com/TFYZ6DOVUE2GDCVIWTVE2WVKIU Amy

            Wish I could “LOVE” this instead of like it!!!

          • Isobel

             Wow, someone’s ego is having a bad day.  That’s what you get I guess, for sounding off arrogantly and insulting people living with pain and disability.   This talk about “science” as if it were a thing, like a clock or a cheese, rather than a process of discovery and adaptation and creative uncertainty doesn’t sound like it’s coming from someone with real scientific training.

            Medical science is an expanding group of processes for arriving at true and useful facts and theories about illnesses and health.  When it doesn’t produce them, people challenge the science.   I thought that was part of the process?

            Holy water hasn’t worked for me any better than the doctor who, staring directly at the bulls-eye rash on my calf, where I’d found a deer tick after doing field work in a meadow at the edge of Harvard Forest, said “You couldn’t possibly have Lyme’s Disease.”

  • Dr_Alex

     I agree that Lyme disease in on the rise with growing deer population and warm winter. As a practicing physician I do not believe that claims of the antibiotic refusal, unreliable long waiting blood tests or “chronic symptoms” in 20% of the people have any scientific merit. Science is about facts, not beliefs.

    • sumajo

      Well, it’s a fact that my doctor refused to prescribe the antibiotic for Lyme on my initial visit because he didn’t believe I had it, in part because the blood test results were negative.  But I did have it, and had to go back and argue that to him, and a later blood test was positive (more than 20 days after the bite).  He was an excellent doctor, long practicing in this area, and a man of influence, but told me repeatedly that he was certain I did not have Lyme.  So, when others tell similar tales, I have no trouble believing them.  I don’t know what percentage of people have this experience, but many do.  I don’t know why you would discount that.

      • Jen

        That’s one of the difficulties in diagnosing/treating Lyme – blood tests rely on antibodies which don’t really show up in abundance for two weeks after infection. Diagnosis of Lyme is clinically based, and if you are one of the 20% or so that never get that “bulls-eye” rash and did not notice a tick bite, your symptoms are non-specific enough that it can be very hard to pinpoint exactly what is going on. 

    • Alexander Davis

      The CDC Lyme web page notes that 10-20% of those treated with antibiotics 2-4 weeks will have persistent symptoms that can last “longer than 6 months.”   As far as its being as you say “geographically limited”, the CDC site under “Statistics” has an interactive Lyme disease map (2001-2010) which dramatically shows how it is spreading.

    • http://chroniclymelookslike.wordpress.com/ Wendy Thomas

      And because Science is confined to facts, it  makes it absolutely self-limiting. 

      LDN is being used, anecdotaly of course, with moderate to significant success in auto-immune disorders (MS, Psoriasis, etc). It’s not being studied or tested in part because it is an off-patent drug (no profit) and is being used off-label (very low doses). 

      Science because of lack of comparative evidence therefore refutes claims of effectiveness. 

      Does that mean, that in fact, it is ineffective or just that because of “scientific constraints” we don’t know? 

      To rely solely on “Science” is to miss a large piece of the picture. 

      • Dr_Alex

        I can tell many anecdotes from the practice, but this would not make a point.
        Vitamin P (Placebo) response plays huge role in such anecdotes.
        You are stating that drug has “not been studied or tested in part because …” Do you have anything to prove your point without empty assertions?

        • Alexander Davis

          shobud one hour ago pointed out a 1990 NEJM article in which Steere states that months to years after an initial Lyme infection patients may have chronic neurological manifestations such as encephalopathy, etc., which “usually improve with antibiotic therapy.” 

          • Guest

            Yes, but Steere will also tell you that those patients are few and far between, and prolonged antibiotic courses are not more helpful than the standard ones.

          • Alexander Davis

            You are missing the point.  Steere wrote that of the patients who had chronic symptoms, 63% improved with IV antibiotics, 22% improved but then relapsed, 15% had no improvement.  That tells us that IV antibiotics can help some people in the chronic stages and refutes those who dogmatically (and unscientifically) say otherwise.      

      • Karen

        Dr Alex is an idiot . Lyme disease unless you catch it right away — is very difficult to cure . I’ve been on antibiotics for 4 months and better but still sick . It sucks !!
        My infections disease dr said — you’re done — the active infection is over .really ? Then why was I still sick ? It’s bull — now am with Lyme Literate
        Do the infra red sauna !!
        When I can’t go ., I feel much worse . When

  • shobud

    Dr. Steere circa 1990:

    http://www.nejm.org/doi/pdf/10.1056/NEJM199011223232102

    Interesting? Initially Dr. Steere did indeed see all these manifestations and this progression. And the disease was described in a much more accurate manner, including the “chronic” phase. He even addressed some (but by no means all) of the potential cognitive aspects.

    Curiously, it was only after beginning work on the Lymerix vaccine that the definition became progressively constrained until it became essentially just an arthritis of the knee. And suddenly “chronic” became “post treatment”.

    Calling Dr’s who actually try and treat patients “anti-science” is absurd. The science is most certainly still out on persistence, thank you Diane Rheems for doing a piece on that a few months back…

  • guest

    Knew this one would be polarizing.  It seems that there are two separate questions here that folks are conflating:
    1)  Can untreated Lyme disease lead to serious bodily signs and symptoms?  I don’t think that’s so much in question as…

    2)  Can the Lyme disease bacteria survive antibiotic therapy and later thrive, and are repeated longterm rounds of antibiotics appropriate treatment? 

    If the bacteria ain’t there, all the antibiotics in the world ain’t gonna provide more than a placebo effect (sidenote:  why are we so resistant to the idea that the placebo effect is real?).  If it is there, then why aren’t the antibiotics killing it; is it that adaptable?

    There’s an interesting anecdote regarding this controversy in Lisa Sanders’ book, “Every Patient Tells a Story.”   Note, I’m representing it as one story, not all stories.

    • Dr_Alex

      Dear guest, I have a feeling you are  at WBUR. We are talking about things beyond those two questions. One of the main question of conversation is about science. Do we entrust facts, or opinions and beliefs. 
      Q2: So far no data on bacteria survival in human beings.
      It’s not a good reporting presenting very emotional and sad story without any mention that this story may not be a Lyme disease story in the end. Creating “controversy” for popularity.

      • shobud

         Science should indeed be based on facts. But the fact is that this is less about science than it is about “whose science”.

        Anyone that contradicts the IDSA stance has an uphill battle due to their sway at journals, etc and their defacto and undeserved status as “experts” based on being there first. What have they have accomplished that benefits patients in any way? Their entire output has been backtracking to cover their disease definition, their reputations and their access to your tax money.

        How many times will we see a blatantly flawed study like Klempner (the oft cited “proof” that long term antibiotics don’t work) while any differing opinions are ignored or deemed “invalid”. By whom? Guess.

        What of the Embers monkey study intended to corroborate Klempner but instead showed persistence in monkeys? Should have come out at the same time as Klempner. Contradictory results. Who was managing these trials… Dr. Philip Baker, currently Executive President of the “American Lyme Disease Foundation”. Hmmmm. An organization that purports to be a patient resource but spends an inordinate amount of time attacking “Chronic Lyme”.

        A quick web search will find critiques of both studies.

        I wonder who else is on the board at the ALDF… http://www.aldf.com/news.shtml

        Do Baker’s comments sound like a non-biased scientist?

        It will be interesting to see what comes from the ongoing xenodiagnosis studies at Tufts.

  • Brubru2452

    Lyme disease is near to becoming one of the largest epidemics in US history, so why isn’t anything being done about it? I am a 24 year old who become one of the statistics this year. Not only is it frustrating that these tiny bugs exist, but add on to the fact that they carry debilitating diseases and it seems like something out of science fiction.
    That is where the story gets interesting, if anyone has read anything about the plum island experiments it seems as though this disease was a product of the cold war and is now affecting our own, but that’s a whole other story.
    Whether you believe in that theory or not, why isn’t there more being done about this disease now? The most frustrating experience I had with this entire ordeal was the inability to get a proper diagnoses… and that was with all the tell-tale symptoms for stage 1 Lymes. 3 ER visits, and 5 doctor’s later I finally came up with a positive blood test that put all questions to rest… or so I thought.
    The more research I did the more questions I had. The main thing this problem calls for is awareness. I had heard was lymes disease was, but I never thought it would affect me. I checked for ticks on a daily basis, not hard enough apparently. The other thing that needs to take place is reform.
    One doctor I spoke with told me that there was no such thing as chronic Lymes disease, that most symptoms people experience after being diagnosed is “Lyme anxiety.” I would like to see if his response would be the same if he ever contracted the disease.
    If anyone would like to read more about my experience they can check out my blog at either 

    http://huntnewengland.blogspot.com/2012/06/ticks.html

    or http://www.northeasthunting.com/lyme-disease/

    Thanks, check twice, stay safe

  • Irene

    The scientific comments below are interesting, and I would not begin to argue with them.. Last fall I had a 4 day bout of high fever, unbelievable sweating and then a full body rash.   When I put this together with the fatigue, joint pain and memory loss I had been experiencing, I asked my doctor for a Lyme test. Since I had not seen a tick or had the classis bull’s eye rash, he argued with me until I said I would pay for the test myself as I had a friend who has suffered neurological issues after having untreated Lyme for some time. I also told him I camp a lot and several of my companions had contracted Lymer.  He finally conceded and was “shocked” when it came back positive.  After a dose of antibiotics and a few months time, I finally started feeling like my old active mentally alert self.

    Three weeks ago, I pulled off a deer tick off again and with two days developed the bull’s eye rash and started feeling the same symptoms almost immediately.  With tick in hand, I was readily given the antibiotics this time and hope to avoid the longer recovery time. 

    • Jen

      It’s good that you were able to have such a good recovery the first time. I would think that with the incidence of Lyme being so high in the area that doctors would at least be aware that a differential diagnosis for rash, fever, and joint pain would include Lyme. Good for you for mentioning the camping, that is important in the workup.

      Good news is that when you catch Lyme right when the rash forms, you should have a complete recovery with the antibiotics.

      • Alexander Davis

        That would be nice, but as the CDC points out on its web page:
        “Approximately 10 to 20% of patients
        treated for Lyme disease with a recommended 2-4 week course of antibiotics will
        have lingering symptoms of fatigue, pain, or joint and muscle aches. In some
        cases, these can last for more than 6 months. “

        • Dr_Alex

          “… which can improve with treatment with blue pill taken twice a day, whatever it contains.”

  • Guest

    One facet to this that I have not seen addressed is, what do people think the motivation would be for “Lyme deniers” to withhold antibiotics?  Surely one would think that infectious disease doctors would be clamoring to own this epidemic of Lyme patients and give them all expensive IV antibiotics.  Could it really be as mundane as that they don’t believe it works?

    • Alexander Davis

       The trouble is that there are legal treatment
      guidelines which benefit the insurance companies in that antibiotics are denied
      on the basis of studies which some refute.  
      Most infectious disease physicians do not want their licenses taken
      away.  “shobud” 5 hours ago pointed out a
      1990 NEJM article in which Steere states that months to years after an initial
      Lyme infection, patients may have chronic neurological manifestations such as
      encephalopathy, etc., which “usually improve with antibiotic
      therapy.” Steere
      wrote that of the patients who had chronic symptoms, 63% improved with IV
      antibiotics, 22% improved but then relapsed, 15% had no improvement. That tells
      us that IV antibiotics can help some people in the chronic stages and refutes
      those who say they never help.

    • shobud

       I believe most Dr’s sincerely try to follow best practices but are hamstrung due to lack of information. They refer repeatedly to the same trusted sources and act accordingly. That is why it is imperative that those sources are accurate and describe the full spectrum of possible treatment protocols. Currently that is not the case.

      • http://profile.yahoo.com/TFYZ6DOVUE2GDCVIWTVE2WVKIU Amy

        I think you hit the nail right on the head here!!!  Same outdated doctors teaching from the same outdated books!!!  Passing on bad info to the next guy.  If   “Dr so and so from Yale” is the best infectious disease Dr and he thinks this…  it must be true…, then it is passed on to every student in his medical school and many others that look to them for the “Best” advise.

    • Wgolfn

      One word……..INSURANCE!

      • http://chroniclymelookslike.wordpress.com/ Wendy Thomas

        In our case we spent 6 years going to 11 different docs. The Rheumatologist was sorry to see us go (monthly visits, monthly injections for the rest of a lifetime = one of his kid’s college educations), the Dermatologist was sorry to see us go (see above), the Orthopedist, the Allergist, the Physical Therapist, the list goes on. We spent 10s of thousands of dollars chasing false leads given to us by physicians who either were clueless or chose not to diagnose (*beleive in*)  Lyme because then they would lose a lucrative patient. 

        Not to sound paranoid, (but fully accepting that I do in my anger at this situation) there is great monetary incentive in the medical and pharmaceutical community to *not* treat lyme disease and it’s chronic form appropriately and instead to manage the patient indefinitely by only treating the resulting symptoms. 

  • Susan

    In 2004, my mother woke up with the left side of her body paralyzed after years ofbeing “diagnosed” with fibromyalgia. The paralysis was in part due toa brain lesion that she is convinced was a result of the spirochetal infection LymeDisease. I was with her at an appointment at Mass General when the doctor toldher that she had Multiple Sclerosis . She refused to believe she had MS,requested to be tested for Lyme disease, which came back positive after a bloodtest. She blames Lyme for her deteriorating health. I am not sure if she reallydoes have MS, or if Lyme is the root cause of all of her health problems – thisseems to be a reoccurring debate among health professionals and in ourcommunities. She is beyond the point of recovery.
     
    She underwent double knee replacements in 2008 – her arthritis and joint/knee pain wereso bad, another result from Lyme – but because of her deteriorating health, mymother has never been able to make a full recovery. I am convinced that I havenever had a healthy mother because of growing up on the Connecticut shore, witha dog, around deer. My mother’s Lyme Disease not only resulted in health issues,but subsequent depression and marital strife ending in divorce. I hope that Ican learn more about his through WBUR and do more to help put Lyme Disease awarenessinto our communities/hospitals as it has truly taken a terrible toll on myfamily. 

    • Alexander Davis

      Because there is no
      pathognomonic test for MS, it is often over-diagnosed.  

    • Kaylenemickey

       So sorry about your mother! I completely understand. I was misdiagnosed for 20 years. I have a LOT of joint damage all over my body. Had 3 surgeries last year. I’ve been getting treatment for 1 year now for Lyme and Babesia. I feel SO much better, but the damage is done. It does take a toll on the whole family. May God bless your mother.

  • Revbrenda

    Once positively identified as suffering from Lyme disease contracted in MA in 2006, my course of antibiotics was too little too late (one month of amoxicillin).  The raging symptoms subsided, but that only confused the issue, because a year later, with a new tick bite, infection flared up with a vengeance.  Thank God I was able to find a doctor who had successfully treated chronic Lyme Disease for years with long term intensive oral antibiotics.  After three years of treatment under his care, I remain essentially symptom free two years post treatment.  For more information see http://www.canlyme.com/donta.html    

  • guest

    Kudos to WBUR for noticing and responding to the feedback regarding this story so quickly.  I think Ms. MacLeod’s story is worth hearing.  WBUR runs these series to attract listeners who will tune in day after day, and I’m sure it works.  But there are plenty who will only hear or read this segment.
     
    I personally enjoy the week-long feature series; I love hearing persons’ stories.  But I have noticed, both in radio and newspaper feature series, that the individual entries tend to be reported as if the point of view was verified fact.
     
    I’m perhaps overly good at compartmentalizing, so I can appreciate a story and still file objections in my brain when something seems illogical.  But I suspect there are those who take anything they hear on the “news” as The Truth.  

    In the future, I hope WBUR will take care to air such stories in better context.

    • Alexander Davis

      I fail to see how this
      report is irresponsible or controversial.  
      Considering the fact that most Lyme victims do not see the tick or the
      rash, and considering that there are false negative tests, clearly many patients
      are not properly diagnosed. With no treatment, the disease can surely progress
      into a chronic situation.  The CDC web
      site states, “if left untreated, infection can spread to joints, the heart and
      the nervous system.”   The patient was
      living in a Lyme-endemic area, had symptoms of Lyme, and eventually had a
      positive test.  This must happen all the
      time. 

       

      • http://pulse.yahoo.com/_LLH7SFRBBDZ54YLFVP6POB6XAI ANNA

         Agree that many cases go undiagnosed due to an unrecognized tick bite, no rash and false negative blood tests. That’s why I am a strong advocate of erring on the side of caution and treating everyone, EVERYONE, that presents with symptoms  with a round of anti-biotics. If it turns out that it isn’t Lyme disease then the anti-biotics won’t work. Why this simple initial treatment isn’t done is beyond me.  Who’s calling the shots here…..the insurance companies?

  • Sher R Nicholson

    Type your comment here.Thank you WBUR for reporting on this elusive disease. I almost died before I found a lyme literate doctor who saved me. For two years I was in hospitals,had many tests, and nothing showed up to prove lyme. I was told I did not have lyme but they didn’t know what I had. It was a lonely depressing time. I was on antibiotics for two years and now off for 6 months. I am doing acupuncture and diet to keep myself well. A month after that my living hell started and continued for three years until I found the doctor who said he treated symptoms when blood tests failed. Thank God for doctors like him. I only pray that somehow we can find a cure for this disease.  Research is being done (my doctor is one of the researchers) but it will take years as there are different co-infections.  Again, thank you for bringing this information to us.

    • Dr_Alex

       I think that treating people years with antibiotics with negative blood test is unprofessional at least.

      • mary

        It is unprofessional and contrary to the Hippocratic oath to NOT treat based on clinical diagnosis.  Savvy MDs know what they are doing, that is to say they follow the guidelines saying lyme is a clinical diagnosis due to unreliable testing methods.  Until we have better tests clinical diagnosis is the only way to avoid lont term infections and lots of suffering.

        • Dr_Alex

           Testing is excellent and reliable, the rest is myth. Some need to keep it as “controversy” -  ego, money?

          • Yah-jax

            For those who are so convinced that Lyme protocols are unnecessary, why not prove it by your own experience. Let an infected tick bite you and then wait. If you have a symptom/s do not run to the doctor right away. Let this sit in your body for 6 months to years. Then you can reach out to your local physician and see just how helpful the testing and standard treatment works for you. It’s easy to say that it’s wrong, controversial, a myth, in someone’s head, and all the other labels that can be attached to Lyme, if you have never experienced it. As the human race we are great at passing judgment but fail horribly at compassion and empathy unless we shared a similar fate or experience. Take the challenge….. After all what harm could come from a little tick bite.

          • Fellow Sufferer

            There you go. Now that would certainly get thngs started wouldn’t it!

          • guest

            Testing is NOT excellent nor reliable. Have you watched “Under My Skin,” Dr Alex? And controversy? For what gain, pain and suffering? To have docs tell their patients that it’s all in their head? I hope that many docs are reading and listening to this forum. Too many stories that are alike. Too many lives ruined. Thanks, WBUR, for shining a light on Lyme. 

          • KarlaL

            In a 2005 study completed at Johns Hopkins University acute
            phase serology missed 55% of patients diagnosed with Lyme through other means.
            Acute and convalescent serology missed 23% of patients.

             

            Retrieved from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1248466/

             

            Check out the 1997 study by the Wisconsin State Laboratory
            of Hygiene/American College of pathologists, which concluded that due to a wide
            variability in reliability of commercially available test kits that they were
            unsuitable for the CDC recommended 2-tier testing and “that stronger measures
            need to be taken by the FDA to control the quality of commercially available
            Lyme disease test assay kits.”

             

            A review by Dr Raphael Stricker of recent studies
            demonstrated that the 2-tier testing method had an average sensitivity of 46%.
            Thus 56 out of every 100 patients with active Lyme infections will test
            negative.

             

            Retrieved from: http://www.ilads.org/lyme_disease/media/pdf/Ray_Stricker_Presentation.pdf

             

            For me this argument involves neither money nor ego but the
            health of several of my family members who were refused treatment by doctors
            like yourself who were grossly unfamiliar with the scientific literature
            regarding this issue. These same family members later tested positive through
            Western Blot and PCR testing preformed by tick-borne specialty labs.

             

            KarlaL

          • KarlaL

            If you want to follow the money and ego trail, you need to
            look no further the IDSA Lyme disease guideline authors. Many of the guideline authors have a financial interest in Lyme disease and co-infection test kits.

             

            These same authors have relied on circular reasoning to justify
            their own model of Lyme diagnosis. They cite (their own) studies which only accept subjects who test positive and then erroneously conclude that all Lyme patients test
            positive.

             

            The IDSA itself has a huge financial interest in keeping
            this topic under wraps. If the IDSA were to admit that serological Lyme testing
            is unreliable, they would be vulnerable to a class action lawsuit on behalf of
            the hundreds of thousands of Lyme patients who have been denied treatment due
            to the IDSA Lyme treatment guidelines recommendations to withhold treatment in
            the absence of a positive test or objective symptoms.

             

            KarlaL

          • http://profile.yahoo.com/TFYZ6DOVUE2GDCVIWTVE2WVKIU Amy

            Thank you Karla!!!!!  My battle with CHRONIC LYME DISEASE has left my brain damaged to the point that I can no longer spew facts like my former self could.  I am getting better, finally, THANKS TO OVER TWO YEARS OF ANTIBIOTIC THERAPY AND A LYME LITERATE DOCTOR!!!!!  

          • Spaniels

             Not true.  Please open your mind and educate yourself.  Why are we using antibody immune blood tests to test for an invader who’s MO is to evade the immune system.  You have better odds of proper diagnosis by flipping a coin.  You are behind the curve and apparently unwilling to educate yourself – stop parroting old outdated, WRONG information.  Doctors are treating patients not out of ego or for money but more likely out of compassion – they risk their professional standing and there is little chance of collecting from insurance for chronic lyme . . . the chronic lyme patient cannot be hustled in and ushered out in 15 minutes the way ‘conventional’ docs practice.  See post below to see just how “excellent and reliable” the current tests are.  Anyone with a scientific mind would change their opinion based on the facts.  You must be one of those docs who is very good at spitting out information exactly as it was read to them from a manual irregardless of truth or veracity.

          • http://profile.yahoo.com/TFYZ6DOVUE2GDCVIWTVE2WVKIU Amy

            Are you even a real Doctor?  You need to do some more reading and fact checking if you think the test are “excellent and reliable”. 

          • shobud

            The greater the ignorance the greater the dogmatism.-Sir William Osler

          • http://www.facebook.com/profile.php?id=1513333105 Kelly Demers

            You must be part of the ISDA OR CDC ??? DR ALEX?? Its Physican’s such as yourself that are making Lyme patients sicker, Or dead..

          • disqus_1998jtXyfF

            You are wrong! I pray you or a family member does not get lyme…but if they did…..then you would understand!

          • barb02earth@yahoo.com

            Dr Alex, if you had lyme you would feel differently. no the testing is not accurate! It is Drs as yourself that need to learn more about lyme disease and the co-infections that go with it.

      • Kaylenemickey

         Lyme is a deep tissue disease and a lot of times it doesn’t show up with blood tests. My c4a was extremely high and CD57 practically non-existent. So these tests do show that I have Lyme. My other blood work was negative. I have been on antibiotics for Lyme and Babesia for almost a year now. Plus I take a lot of supplements, vitamins and herbs and follow a special diet. I was very ill for 20 years and went to many kinds of docs before I found this one. Since I started treatment a year ago, my pain is mostly gone now, I have energy and feel healthier than I have in many, many years. My C4a is significantly lower, my inflammation is mostly gone, my brain fog is gone and I’ve lost a lot of weight. The Lyme attacked my joints. Last year I had surgery on both hips and my left wrist. All of the discs in my spine are narrowed and my left big toe is in bad shape. I’ve been to three rheumatologists in the past and they could never find anything wrong. My hip surgeon really pushed me to find an answer because I’m 49 and will soon need complete hip replacements. Lyme made total sense to him when I relayed the news. All the docs and people I know are amazed at how much better I am. I have my life back. I will forever be grateful to this doc who is treating me! By the way, I grew up in Arizona and have lived in New Mexico for years now. Lyme is NOT just back east.

      • Graci

        It would be really nice to have the blood work that conclusively proved the particular strains present in the body’s systems, however  they do not currently exist. Existing testing options do not detect every type of bacteria in the Borrelia and co-infections that can be transmitted in tick-borne illness. Taking a thorough history and really taking the time to listen to all the symptoms, and over time is a reason to treat with long tern antibiotics and other medications and treatments. Lyme is a spriochete, like syphilis. If it has invaded the tissues for periods of time it may have done incredible amounts of cell/tissue/nerve/ etc damage and require many different forms and or  long term use of antibiotics.

      • guest

        Negative blood test does not mean negative for Lyme. So many false negatives. Best labs are Stonybrook and Igenex. But doc has to look at all symptoms. 

      • http://www.facebook.com/profile.php?id=1513333105 Kelly Demers

        I think your not educated enough, Most Lyme tests are inaccurate and UNRELIABLE! Treat the person!! WOW

  • Davidmassongill

    Your story is so familiar to mine. I’ve been fighting Lyme for ten years now.

  • Brian Bethke

    I am 32 years old and have been going through this since I was 23. I lost my business and almost my life when I was 27 and went through over a year of antibiotics which seemed to send the lyme further into my Brain and nervous system. They are now telling me it has turned into Multiple Sclerosis. The only treatment I have found that has been helping me in a natural herb tincture, bcomplex, Vitamin D, Probiotics and other natural herbs I will not mention. I still suffer everyday but seem to be getting a handle on it. I have now been pursuing my music career and the music has become a healing tool as well. Hear is a little song I wrote about how this battle makes you feel. http://www.youtube.com/watch?v=oLMz2JwAE_U&list=UUVAonqjUS2Ko6G3dbWxwpYw&index=3&feature=plcp

  • AJS

    I have been having joint pain in hips, knees, neck and back for years. With negative Lyme tests, normal MRIs, and some degenerative changes on x-rays. Most recently I have developed twitching in both feet day and night that is driving me crazy.  Also have increase in left eye pain. Is this Migraine, Lyme?  No doc has been able to suggest what this might be. I have also had bilateral mastectomies with implants for Breast Cancer but no Chemo or Radiation, just tamoxifen.

    Would anyone care to share the names of the their doctors/labs that have diagnosed them as Lyme sufferers?  I am getting very frustrated and worried.

  • guest

    Hi AJS,
    I would recommend talking to Dr. Bert Mathieson at NH Natural Health Clinic in Bedford, NH.  He is lyme literate, treats with antibiotics and immune boosting protocols.  He will do a thorough exam and look closely at your blood work.  Have you ever had an “equivocal” lyme test? 

    • guest

      Mentioning a specific doctor’s name in public like this can put them at risk. 

      • http://chroniclymelookslike.wordpress.com/ Wendy Thomas

        good point. 

        However, NH (where this resource was mentioned) is one of the few states that allows a doc to treat Lyme AS THEY SEE FIT safe from any kind of prosecution. 

        How did we become so lucky? One of our State reps had actually contracted Lyme disease and she suffered greatly until she got treatment. She championed the bill. 

        Unless you’ve had Lyme or know someone who has it, you have no clue. 

        • Kaylenemickey

           That’s awesome! It’s such a shame that most Lyme docs have to practice in the dark for fear of being prosecuted. I wish ALL the states had this bill. All they are trying to do is help people.

  • KS

    I posted this on the debate thread but also wanted to post here.  But first I want to say how much I appreciate Barbara sharing her story. 

    My story is one similar to Barbara’s.  I was just diagnosed 1 year ago. 

    I think one of the important facts that is not mentioned in her
    original story or here is that indeed the years of steroids compromised
    her immune system and likely allowed the infection to spread, dig
    deeper, and be harder to detect and eradicate.    With all due respect
    to Dr. Drapkin, that is the danger of treating Lupus or RA , or other
    autoimmune disease (few diagnosis of these are  and dry)  without first
    doing a trial run of antibiotics when Lyme is even slightly suspected.  

     I am constantly 2nd guessing my diagnosis.  Maybe I really do just
    have fibromyalgia, or getting older.  I worry about long term
    antibiotics.    But I notice a big difference on them.  It is the
    difference between functioning and not.   When teenagers are given long
    term antibiotics for Acne… or adults for chronic sinusitis, the
    medical community does not bat an eye.  So why is an antibiotic trial so
    unquestionable when Lyme is even a remote possibility?  If one does
    have Lyme shortly after starting antibiotics you will know it.

    Like Christine says, whatever it is, if it the symptoms respond to antibiotics, it just makes sense. 
     

    • Dr_Alex

      Thank you for your expert opinion on treating RA and SLE and long term antibiotic treatment.

  • Momcurry4

    I had Lyme Disease back in 2009, I am fine now with only minor, occasional symptoms. I took oral antibiotics and under went Hyperbaric Oxygen Therapy for about a year. I truly believe that with out the HBOT I would not be well enough to function and care for myself or my family. I would advise anyone to look into HBOT for Lyme Disease. They use it in Europe with positive results!

  • Tabascoblue

    Wow!  I have recently been diagnosed with Chronic Lymes Disease and this story has “hit the nail on the head”.  We live in a rural part of Arkansas and get tick bites all the time.  My husband had an acute case of Lymes last summer caught and treated early. Having allergies, I guess I never noticed a bulls eye rash or ran a high fever.  I had a 10-12 week bout of vertigo followed by loss of upper body and hip strength with extreme fatigue that made my chiropractor suspect Lymes.  Its unknown how long I have had the disease, and I see the “specialist” in Arkansas in August to determine the extent of damage to my organs.  I have been on Doxycycline for 8 weeks plus black walnut and have gone to a grain free diet.    I am a long way from being back to my old self but I am encouraged by MacLeod’s experience.

    • Dr_Alex

      Lyme in Arkansas ?!!! Flamingo on the North Pole. Polar bear in Africa. The same.
      Please, consider other real options, talk to your physician and trust him/her.

      • Spaniels

         Lyme cases have been confirmed in 49 of 50 US states.  You are smug and narrow minded.  If you have all the symptoms of lyme, you are ignorant to rule it out based on what state you live in.

      • Kaylenemickey

         I’ve never been anywhere near the east coast and I have Chronic Lyme Disease!! I grew up in Arizona and now live in New Mexico. Why don’t you get your head out of the sand and realize that this disease has spread! I went to docs for 20 YEARS and was diagnosed with: Osteoarthritis, Panic Disorder, Fibromyalgia, Chronic Myofacial Pain Syndrome, Episcleritis and Scleritis, etc. etc. TRUE, I did have all the symptoms of these things, but the underlying cause was Lyme! Since I’ve been treated for Lyme ALL of these things have disappeared except for the permanent damage to my joints! Your comments make me SO angry! How dare you MOCK us who have had to live with this horrible disease for years. Docs like you just want to throw pain meds at us and give us shots and drops that do nothing to make us heal. I am 49 years old and have permanent damage to my body for the rest of my life because so many docs never got to the root of my problems. Lyme Disease IS a REAL option, sir.

        • Laura B

          Some docs can’t think outside the book…not really scientifically inclined.

      • getting more and more upset

        People travel.

        • Kim Forsberg

          Dr. Alex,

          would you please do us a favor??

          Get off of this site and go talk about your ignorant , outdated info somewhere else!! As Lyme patients we have all experienced doubt , incorrect testing, years of suffering in most cases, horrific pain, loss of our lives, and flat out being told we are crazy. We don’t need to hear your disbelief or incorrect statistics on this site. WE HAVE HEARD ENOUGH OF THAT!! We are here to support each other. And, you sir have no place on this board.

      • Laura B

        Try Climate Change…the earth was flat once too and the sun revolved around it.

  • Jacqueline

    Thank you, Thank you, THANK YOU!!!  Thank you Barbara and WBUR for telling this story.  I heard it cried and then I even laughed out loud at times, because what she said described my sister.  My “little” sister, once a very healthy woman, who was an avid hiker, who also loved to snow board, ski, bike, camp, and ran races, came down with mysterious ailments.  For 4 years, she saw specialist after specialist, from Boston to Connecticut to Western Massachusetts.  She was placed on expensive medications, given shots of cortisone, diagnosed with fibromyalgia, intersticial cystitis, and had acupuncture, physical therapy and chiropractic work.  She, like Barbara, was afraid to tell the doctors all the symptoms she was having because she thought they would think she was crazy.  She was in such terrible agony that my whole family thought we might lose her.  And I think we almost did.  Fortunately, or rather unfortunately, I was diagnosed with Lyme.   After I started getting joint pain and feeling extremely fatigued, I remembered a rash I had last summer and thought I might have Lyme.  As most people will tell you, my initial test was negative, but a wonderful MD looked further and diagnosed me with Lyme.  When my Lyme specialist had me answer a questionnaire, that included many of my sisters problems, I called her and urged her make an appointment.  She started antibiotics a few months ago and is feeling a little better.   Getting this diagnosis and starting treatment has definitely saved her life.  At this time, I, my husband, sister, and father have been diagnosed with Lyme.  It’s possibly my brother has Lyme too. 
    I fear for my children every day.  We all spend time outside.  We have pets.  We check ourselves every night.  It’s not enough.   But I hope this story will help others to understand and more doctors to start testing and treating appropriately.   Thank you again.  

  • Nypanc

    I had the following symptoms before being diagnosed with Lyme disease: stiffness in neck, severe headache, vertigo, numbness in the left side of my face, unsteady gait, ringing in left ear, and periodic weakness in my wrists, and insomnia. I was not correctly diagnosed by an Infectious Disease doctor or a prominent rheumatologist or an Internal Medicine doctor and my symptoms worsened. Finally, an ENT in NYC figured it out and I found my way to a family doctor who specialized in Lyme disease in Pennsylvania. It was a slow process, but after 3 years of oral antibiotic treatment, I was well on the road to recovery. I am relieved to say that intensive antibiotic treatment, and the treatment of co-infections as well, restored me to good health. To those patients who do not feel much better after months of antibiotics, I would say that it took more than a year for me to start to see significant improvement. Just don’t give up on the treatment too soon.

  • Just Julie

    If  Lyme spirochetes can manifest in 3 forms, treatment would be complex, lengthy, and vary as time goes forth.  The spirochete bacterium and biofilm forms may be erradicated by antibiotics but how about the cyst and L (inside other cell) forms?  And what if the spirochete by it’s very nature, digs deeper into adjacent tissue, eluding blood tests, creating new symptoms?  Perhaps if a few spirochetes were killed off in the blood, produced antibodies/antigens they might be detected by a sensitive lab test, if it existed.  And maybe not.  So Lyme, not to mention it’s co-infections transmitted at the same time as the initial bug bite, takes a LLMD to sort all this out and coach the patient to wellness.  We patients must educate ourselves and participate in the recovery process as well . . .

    The money issue fascinates me.  I would think it would cost less for insurance companies to cover mass-produced/cost-effective antibiotics than to cover the myriad of expensive tests, specialists, therapists, medications and so on for decades as the patient searched for answers.   

    As for me, I’m grateful for my LLMD, low dose antibiotic, nutritional strategies, Rife technology and faith in Jesus Christ.   I’m early in this process and progressing despite complications and expense.  You doubters keep duking it out.  I have hope and am getting well, thank you. 

  • Julie–Byfield, MA

    I want to thank WBUR for airing this story.  My story shares many similarities with Barb’s, as do so many chronic Lyme sufferers.

    Ten years ago I thought I had Lyme, because I had shooting joint pain.  My PCP tested me and it was “negative.”  I spent the next two years going to various drs for myriad problems:  ringing in my ears, dizziness/vertigo, heart problems, eye problems, memory and word retrieval issues, psychiatric issues, a 2nd trimester miscarriage, etc., all symptoms of Lyme.  

    In the meantime, my younger son, one-year-old at the time, started suffering from various problems.  Our local (Newburyport) pediatrician tested him for Lyme and began treating him.  When he did not get much better, she sent us to pediatric Lyme specialists at one of the pediatric hospitals in Boston, where we were told that he, now a 3 yr old who had trouble walking, had “growing pains.”  

    We ended up seeing a pediatric Lyme specialist in CT and not only did he find the DNA of the Lyme bacteria in my son (growing pains? Ha), I read through the list of symptoms and once again suspected  I had it.  Testing revealed I did.  And I had all that time, likely giving it to my son through nursing.

    My son improved over a few years of antibiotics , and I have been in and out of treatment, trying to remain in remission, for that past ten years.

    Barb’s story is typical.  Mine is too.  Chronic Lyme exists and doctors need to diagnose and treat is properly.

  • Dr_Alex

    “Although unsupported by scientifi c evidence, a belief
    system has emerged for some activists over the past
    20 years—that Lyme disease can cause disabling
    subjective symptoms even in the absence of objective
    signs of disease, that diagnostic tests for extracutaneous
    manifestations of Lyme disease are often falsely negative,
    and that treatment with antibiotics for months or years is
    necessary to suppress the symptoms of the disease,
    which often recur despite prolonged antibiotic therapy.
    Consequently, some individuals with medically
    unexplained symptoms and others with more well
    defi ned conditions  were diagnosed with, or
    themselves attributed their symptoms to, Lyme disease
    in the absence of supportive laboratory data. Believing
    that they were chronically infected, these individuals
    formed support groups and sought treatment from
    “Lyme literate medical doctors” (LLMDs)—physicians
    who specialise or claim to be experts in the diagnosis and
    treatment of patients with what has been called chronic
    Lyme disease. The overall result is that many patients
    who receive long-term treatment have no convincing
    evidence of ever having had B burgdorferi infection, by
    history (sometimes including having never been exposed
    to ticks, never having been in an endemic area, and never
    having had objective clinical fi ndings suggestive of Lyme
    disease), physical examination, or laboratory test
    results. Even children with autism are thought by
    some LLMDs to have persistent B burgdorferi infection as
    the cause of the disorder”
    From: Antiscience and ethical concerns associated with advocacy
    of Lyme disease.  Lancet Infect Dis 2011;11: 713–19

    • Alexander Davis

      The CDC Lyme web site states, “if left untreated, infection
      can spread to joints, the heart and the nervous system.” It also reports that “approximately 10 to 20% of patients treated for Lyme
      disease with a recommended 2-4 week course of antibiotics will have lingering
      symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can
      last for more than 6 months.” In addition, the CDC website (under FAQ)
      states that people given antibiotics early may not produce enough antibodies to
      have a positive test. Furthermore, under “Statistics”, the CDC has an
      interactive map which shows that Lyme is not geographically limited but is
      spreading as seen in maps from 2001 to 2010. 

      Certainly there are some people who believe they
      have Lyme when they do not. On the other hand, there must be large numbers of
      untreated patients (since most people do not see the tick or the rash) whose
      Lyme infection has spread to joints, heart and nervous system. These patients
      must be treated and not pronounced fraudulent. The same goes for the 10-20% of those
      treated who continue to have symptoms and may even have a negative test due to
      antibiotics. This Lancet article was co-written by some of the people on the
      panel which drew up the legal treatment guidelines. This panel included those
      funded by the insurance industry which happily used the treatment guidelines to
      deny coverage.

      • Dr_Alex

         It’s a strong accusation of well known and well-respected physicians to receive funds from insurance companies (I never heard about it). Do you have facts, or it is another unsupported statement.

        • Alexander Davis

          My comments were not unsupported.  Mostly I quoted the CDC web page.   The insurance company funding information comes from documentary “Under Our Skin” which discusses the CT Attorney General Richard Blumenthal’s case against the Lyme physicians who wrote up the legal treatment guidelines. Their conflicts of interest are reported.   

        • KarlaL

          “Attorney General’s Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter”
          May 1, 2008

          “Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification. The guidelines are also widely cited for conclusions that chronic Lyme disease is nonexistent.”

          “This agreement vindicates my investigation — finding undisclosed financial interests and forcing a reassessment of IDSA guidelines,” Blumenthal said. “My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA’s guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.”"Blumenthal added, “The IDSA’s 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests — in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies — to exclude divergent medical evidence and opinion.”Retrieved from:  http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

      • Dr_Alex

         I agree, that there are untreated patients who had never been tested, although not many.
        If one does not have detectable antibody after antibiotic treatment, great, they are treated and free of the microbe.

        • KarlaL

          Check out the 1996 study by Dr. Benjamin Luft entitled: “Azithromycin compared with amoxicillin in the treatment of erythema migrans. A double-blind, randomized, controlled trial.” 57% of patients who relapsed were seronegative at the time of relapse. Patients who were seronegative were much more likely to relapse than those who were seropositive. Thus the seronegative patients were sicker and more treatment resistant than the seropositive patients. 

          KarlaL

          • Dr_Alex

             Primary endpoint of the study was to compare amoxicillin and Azythromycin. The study showed that Amoxicillin provides better treatment of early Lyme.
            First, I do not think, that 57% is much higher than 43%.
            Conclusion that Sero – patients are sicker and more treatment resistant goes beyond study design and conlusions.

          • KarlaL

            If you read over the article carefully, you will see that the difference in response between the seropositive patients and the seronegative patients is statistically significant. 

            Direct quote from the article: “For patients treated with azithromycin, development of an antibody response increased the possibility of achieving a complete response (81% of seropositive patients achieved a complete response compared with 60% of seronegative patients; P = 0.043). 
            Either way, being seronegative is not an indicator of successful treatment response.

            KarlaL

          • Dr_Alex

             Azithromycin showed to be inferior to amoxicillin in the article

        • Alexander Davis

          How would you know how many untreated Lyme victims there are?  Since most victims don’t notice the tick or the rash and the ticks are becoming more and more numerous,  there must be huge numbers of such people.   

    • KarlaL

      The quoted article is not about the science of Lyme disease and is little more than a strike-back by the authors of the IDSA Lyme guidelines against Lyme advocates and LLMDs. The authors are for the most part the same people who were investigated by the CT attorney general for violation of antitrust laws in connection with the development of the IDSA Lyme treatment guidelines.  

      This opinion piece only serves to illustrate the extreme bias that the IDSA Lyme guidelines authors brought with them to the Lyme disease guideline development process. 

    • Bgray111975

      Who is this Dr. Alex? It’s people like you that are keeping Lyme patients sick!

    • Laura B

      There is no such thing as an endemic area any more. Globalization has allowed many more life forms than Ticks to hitch a ride anywhere and everywhere. More importantly is the “fact” that there are more than one species of Lyme and that is a problem. If the labs are only testing for strain “A” then B, C etc….won’t show up as positive.

  • Susan

    I am so happy to hear you are doing well after years of suffering from Lyme symptoms. I contracted lyme in the 70′s; 22 years before it was diagnosed. I’m able to work, but every day is a battle for health. Best regards, Susan

  • http://chroniclymelookslike.wordpress.com/ Wendy Thomas

    Please, everyone, ignore the troll Dr_Alex (and based on his remarks, this is no legitimate physician), he is only here to incite and inflame. He brings nothing of substance to the discussion.

    If we all ignore him, maybe he will go away. 

    • Dr_Alex

       Thanks, Wendy for your polite notes. In your culture you go personal if you don’t have arguments? That’s sad.

    • Aschwing68

      Yes, if Dr Alex was even a little bit courageous he would get himself infected with Lyme disease. he would then wait for the devastating symptoms and give himself a few weeks of antibiotics. Why do none of these doctors try to go through what we are going through? Years and years of incredible suffering. Come on doctors be courageous like the doctor who gave himself H Pilory, and proved it was curable by antibiotics. The time will come when all the Lyme denying doctors will be proved wrong. Will they feel sorry for the years of pain we incurred without any help from them? I am one of those who has suffered years of horrible Lyme symptoms. I have had some nice Lyme litterate doctors, and countless ignorant doctors. When will this change? When will the truth about this disease be understood?
      Anne Schwing

  • ScottBarry

    Please tell us more about the latest research on Lyme.  Are there new studies on taking long term anti-biotics? New and better diagnostic tools for Lyme?

    • Rachel
      • Rachel

        (I should add that I am one who had many negative ELISA and Western blot tests, from various labs including IgeneX, went through several years of severe suffering, saw 31 doctors, and finally received a positive culture test this past January – 100% conclusive and definitive for Lyme).  Unfortunately, my system has been too intolerant and overly-sensitive to any treatments: oral abx, IV abx, herbal protocols, etc.

        If anyone here is from VT, please join our Facebook support group at http://www.facebook.com/groups/vermontlyme.

        • Dr_Alex

           If it is appropriate, can you tell me in which lab culture was done. You are not talking about PCR?

    • Dr_Alex

       In 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)

      In terms of testing, :

      Newer ELISAs that utilize
      recombinant, highly conserved, and immunodominant antigens (e.g., VlsE)
      or portions thereof (26-mer peptide from the sixth invariable region [C6 peptide])  serve to increase accuracy even further than conventional ELISA test, particularly during early stages of disease.

    • Julie-Byfield

      There are some very good websites:  

      http://www.lymediseaseassociation.org
      http://www.ilads.org

      Please visit these–and please heed Barbara MacLeod’s story (and please see my post below)

  • http://profile.yahoo.com/TFYZ6DOVUE2GDCVIWTVE2WVKIU Amy

    Loved your Beautiful music and wish you good health!!  Would you ever consider playing at a Lymefest in Maine???

    • anne.berg1

      Can you tell us more about the Lymefest? I googled it and didn’t find any info. Thanks. 

  • Oakridge

    This is an accurate story, but fortunately, most people are treated before this point and unfortunately, most people don’t believe it unless they’ve experience it.  Therein lies the horror of lyme.

  • Bgyray111975

    Everyone should read this…..
    Tammy Asher, Unprecedented Antitrust Investigation into the Lyme Disease Treatment Guidelines Development Process, 46 Gonz. L. Rev. 117 (2011).
    Especially Dr. Alex …

    • http://chroniclymelookslike.wordpress.com/ Wendy Thomas

      thanks for posting that. Very interesting read. 

  • Dede C.

    Hi and thank you. It does bring back the emotional pain of the suffering from chronic Lyme to look back. I suffered for many many years with it and three of my four children also had it because of it being given thru the placenta. My experience is similar and different in ways. We are down here in Georgia. It was a harrowing experience. We are all Lyme free now, but I am still recovering from the havoc is did on my body.  

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