Once more unto the breach: chronic Lyme disease

I like to think of it as a rite of passage, a trial by fire through which hardy bloggers must pass.  A point of pride, really.  Like staying on one’s horse while jousting, or figuring out how to navigate the subways after moving to New York City.

I refer, of course, to being compared to a Nazi because someone disagrees with one’s point of view.

Now, if the point of view one is advocating is that National Socialism was misunderstood, or that Hitler wasn’t all that bad, or that horrible things should happen to the Jews, then the comparison is apt.  One has it coming.  But Godwin’s Law didn’t spring out of thin air.  All too often these comparisons materialize when someone has taken a view that has nothing whatsoever to do with fascism or gas chambers or whether to invade Poland.

In my case, it was because I had the temerity to question the existence of chronic Lyme disease.  For this, I was compared to Josef Mengele.  (You’re kind of gonna have to take my word for it, since that comment pretty much said “delete me” in big, bold, red letters.)  As a gay pediatrician who is Jewish on one side, you can imagine how much that comparison warmed the cockles of my heart.

So it was not without a certain measure of anticipatory weariness that I read this article in Slate (via Roger Ebert’s Twitter feed [a phrase that is pure joy to type]):

Let’s play doctor. A patient comes to you with joint pain, difficulty concentrating, anxiety, poor attention, and mood swings. You might run a series of tests to rule out a persistent infection or other disorder. If your patient lives in a tick- and Lyme-disease-infested area, you would be wise to test for the bacterium Borrelia burgdorferi and, if detected, prescribe a course of antibiotics. But suppose the tests come back negative and there is little evidence that your patient was bitten by a tick or was infected with the Lyme disease bacterium. If you are a good doctor, and you are, you might explore a diagnosis of depression, a disease that afflicts almost 10 percent of the population at any given time.

If you are a doctor who believes that the CDC and NIH have misrepresented carefully vetted clinical trial data about the diagnosis and treatment of Lyme disease, however, you might diagnose your patient with chronic Lyme disease and prescribe an intensive, long-term, side-effect-laden, mega-dose of antibiotics.

And who would be the biggest supporter of your and your patient’s right to pursue a worth-testing-but-found-wanting treatment? Mitt Romney and Paul Ryan.


The article links to this post on The Weekly Standard‘s blog, all about a mailer from the Romney-Ryan campaign that was sent out in northern Virginia.  The mailer features the following promise:


And how will they do this?  Among other things:

Encourage increased options for the treatment of Lyme Disease and provide local physicians with protection from lawsuits to ensure they can treat the disease with the aggressive antibiotics that are required.

Oh, super-goodie.

This is where I am going to stop and say outright that I do not believe in the existence of chronic Lyme disease.  I am in good company here, what with the Infectious Diseases Society of America and the Centers for Disease Control taking similar stances.  Everything I could possibly say about the subject is handily included in this article in the New England Journal of Medicine, and I’m not going to waste a lot of time trying to justify my medical opinions in this area.  I think physicians whose practices are dedicated largely or wholly to treating “chronic Lyme” are charlatans, and unhappy patients should have every right to sue them when they realize they have been victims of chicanery.

If you are a random reader who comes across this blog and thinks I’m a moron or monster because of these opinions, I have no interest in dissuading you.  If you think the IDSA and the CDC are rife with similar morons and monsters and thus their official pronouncements are to be treated with nothing but suspicion, there’s probably not a blessed thing I can say that will change your mind.  Bluntly, I can’t be bothered to try.  Something something free country, and all that.  If you feel compelled to call me a moron or a monster in the comments, I’ll try to handle it with sang-froid.  (Compare me to a Nazi, however, and I’m afraid your thoughts are destined to dissipate in the ether.)

The opinions of random commenters on the Internet?  Not a big deal.  Want to know what is a pretty big freaking deal?  The opinions of nominees for the Presidency and Vice-Presidency.  And want to know what is pretty freaking disturbing?  When they’d choose to pander to voters in swing districts by touting their willingness to protect frauds from legal repercussion in defiance of the scientific consensus from essentially every medical body that has seen fit to weigh in on the controversy.  It was bad enough when this kind of madness was spouted by some of the more wild-eyed candidates on the dais during primary season, but supposedly Romney and Ryan were the ones the GOP thought sanest and most worthy of the nomination.  And still they’re willing to toss the CDC overboard if it means a handful of credulous voters in a swing state might be somewhat more inclined to support them?

Am I all that surprised?  No, not really.  At this point, I wouldn’t be surprised if ol’ Mitt were willing to deny that our solar system is heliocentric if it would put Wisconsin back in play.  Do I actually think anything in this mailer reflects the potential for any real impact on any legal or healthcare policy in Virginia or elsewhere?  Not really.  Is this even all that big a deal, all things considered?  Nope.

Is it one more reason I won’t be voting for Mitt Romney?  Is it one more bit of evidence that probity and respect for science are nothing to his campaign when it comes to pursuing votes?  Is it one more pebble on the rock pile of my disdain for the man and all he stands for?  Yes.  Yes, it is.

Russell Saunders

Russell Saunders is the ridiculously flimsy pseudonym of a pediatrician in New England. He has a husband, three sons, daughter, cat and dog, though not in that order. He enjoys reading, running and cooking. He can be contacted at blindeddoc using his Gmail account. Twitter types can follow him @russellsaunder1.


  1. Honestly, I find this so weird. I believe I live maybe five miles from Virginia in a totally tick and Lyme infested area. I just pulled out the second deer tick this year alone from my oldest kid, and my husband has had three bites. I have never heard of chronic Lyme (as opposed to regular old Lyme). No one I know talks about it. I really had no clue it was A Thing until I learned the godfather of my Jewish disabled child was Mengele.

  2. I used to be in very good shape, used to jog, workout. After getting lyme and being “treated” I’m an empty shell of the man I used to be. I fucking hate people like you, you dismiss tens of thousands of people, all of which happen to seem to have the same symptoms and have had lyme disease. Go read about the study done on rats that were given lyme disease, treated with an insane amount of antibiotics, then dissected and still had the live lyme bacteria inside of their bones. Or maybe the one done that did spinal taps on three different people, those with suspected CLD, those with suspected CFS, and healthy individuals as a control, the peopel with CLD had, on average about a 1/3rd of the protiens in their spinal fluid as the control subjects did.

    • Thank you for expressing yourself so eloquently, Steve. It is a pity that you provided no citations in your comment, and thus I have no way of giving an opinion about the scientific validity of the evidence you allude to.

      • It is at least as much a pity, Dr. Russell Saunders, that you provide “no citations” in your blog about WHO YOU ARE. You pose yourself as medically knowledgeable, and, to your credit, you do cite some reputable medical references. But so can very reputable physicians on the other side of the Lyme argument. But all we know about you, is what you have chosen to reveal, that Russell Saunders “is the ridiculously flimsy pseudonym of a pediatrician…” who apparently wears a head mirror in the office like ENT doctors used to do in the years before the invention of the small battery operated head lights. As a Fellow of the American Academy of Pediatrics, I look with great suspicion on someone who poses as a pediatrician, but will not let us check his credentials.

        • But so can very reputable physicians on the other side of the Lyme argument.

          Very well. Post them then.

          And if you are really so irony-impaired that you cannot see the humor in the picture I chose to “represent” myself, then why on earth should I care what you think? I write under a pseudonym because it suits me to do so, and people are free to believe me or not. My credentials will not bolster my arguments if those arguments fail on their merits. I’m not prescribing treatments, I’m writing an opinion piece on my blog. Take it or leave it.

          I find your “pos[ing] yourself” phraseology amusing, as though I am a fully articulated Ken doll. And the letters after your name are very nice, but they just mean you’re up-to-date with your AAP dues. As a fellow Fellow of the American Academy of Pediatrics, I’m not overcome with concern at your suspicion.

          • “…as though I am a fully articulated Ken doll…”

            We can dream, can’t we?

        • I would like the record to reflect that no one should interpret my gravatar as an implicit assertion that I can read the future.

          • Full disclosure: As my avatar suggests, I moonlight as a beloved token in the board game Monopoly.

          • But then HOW DID YOU KNOW that I was going to ask you if you could read the future, huh?

            Answer me that. 🙂

        • It is a woman by the name of Laura Helmuth who wrote an article for The Slate and the above post is her rant about all the flack she got about it. And, funny, I do see the irony of the idiot doctor picture…idiot doctor is the the reference I see.

        • I look with great suspicion on someone that is not listed online as being a physician. Where exactly do you practice, Dr. Douglas M. Spencer, MD, FAAP?

  3. It took about a year to get rid of my Lyme disease and the symptoms that went along with it. I do not have Chronic Lyme Disease, but I caught my infection relatively early, about 9 months. My primary care doctor said there was no way that I could have Lyme disease and didn’t want to test me for it. Anyway, the test came back positive and she only prescribed me a month of antibiotics and that did not resolve the issue and I was forced to go to another doctor. I was living in NJ at the time and found that the ID docs there had a very casual attitude towards it as well. Oddly enough, the best care I received for this was from my neurologist (who I see for another issue) after I moved to Texas. The main thing that he did that was so healing: He listened to me, believed me and worked with me to resolve my pain and symptoms.

    What kind of long term damage is done to the body after an infection of 2 years or more? What if chronic lyme isn’t a persistent infection, rather the damage that was done to the body?

    I guess what I am trying to say is that, if a large number of people are complaining that they don’t feel well, we need to listen to them. What could possibly be worse than feeling sick and then having your doctor tell you your crazy? I can understand why people get so upset because there is an entire portion of the medical community that has a feeling of disdain for the disease and people who have it.

    People go to the Lyme specialists because mainstream doctors tell them that they are crazy. What other choice do they have? If you were feeling pain, would you stop seeing doctors until you found someone who wanted to help you? They may or may not be sick for the reasons that they think, but there has to be something there and doctors owe it to their patients to help their patients. And, I agree, that some of the Lyme specialists might be capitalizing on people who seek relief from their pain and blinding depression that comes with it. So, perhaps some mainstream doctors like yourself should take one more look at this from another point of view before you sweep it under the rug.

    All I can say is this: I had no idea what a horrible sickness this was until I got it. And, it may be that we are looking at “Chronic Lyme Disease” in the wrong way. If you really don’t believe in Chronic Lyme, you might try infecting yourself with the disease, waiting two years to treat it and see what happens. If there is even a tiny bit of doubt that you would be able to completely cure yourself, perhaps you owe your patients the benefit of the doubt.


    • 1) I agree that it is important that patients’ concerns are treated with compassion, concern and respect.

      2) I would never tell a patient they were crazy.

      3) I am sorry to hear you have had a difficult time. I do not think offering any further commentary on a case with which I was not involved would yield a helpful conversation.


    • If a patient is harmed by a chronic Lyme Disease specialist, they should have the right to sue. They should face the same legal exposure as any doctor who practices outside the standard of care. Why should doctors who treat Lyme Disease get special rights?

      • Second that. However, then you discover the real reason the referenced orgs exist…that that is as a protection to doctors. Currently I am suing doctors and the clinic I went for over 2 years and not tested or diagnosed with Lyme, I now have damage as a result of their failure.

    • Rebecca,

      Agree, however, I would say for him to get infected with Lyme along with the multiple co-infections such as Babesia, Ehrlichia, Bartonella, etc. then wait ten to fifteen years for a correct diagnosis. I was diagnosed with Chronic Fatigue Syndrome in 1993 by one of the IDSA’s Infectious Disease docs only to get the correct diagnoses in 2008 AFTER my body totally collapsed. Lost my twenty seven year teaching career to this disease. As they say, you don’t get it until YOU get it!! A Spirochete is a Spirochete whether it is the Lyme bacteria or Syphilis. It’s the ‘head in the sand’ archaic mentality to think the Lyme Spirochete could not do the same damage to the body that the Syphilis Spirochete can do. So Russell Sanders, although I never wish this disease on anyone, I do wish you could experience what those of us with Chronic Lyme experience.

      • The nifty thing about both syphilis and Lyme is that they are both curable illnesses. As are babesiosis and ehrlichiosis, for that matter. I’m not sure what species of Bartonella you’re referring to, but will assume you mean cat scratch disease? That one is self-limiting, and doesn’t even require treatment. (Or did you somehow come down with trench fever?)

        I do wonder if perhaps there is more that occurred in that 15-year gap than your comment admits. Regardless, as I’ve already said, I’m not really inclined to convince people like you of anything. You are welcome to your beliefs.

  4. I pity the patients you treat! Oh wait you DON’T treat those poor kids with Lyme Disease! And you have to publish a post with a pseudonym?? Yeah, some “REAL” doctor! I hope you develop Chronic Lyme real soon, because then you’ll know how hundreds of thousands suffer….

  5. If you are a doctor who believes that the CDC and NIH have misrepresented carefully vetted clinical trial data about the diagnosis and treatment of Lyme disease, however, you might diagnose your patient with chronic Lyme disease and prescribe an intensive, long-term, side-effect-laden, mega-dose of antibiotics.

    “You know, they laughed at Edison! And Einstein! And Wilberforce!”

    “Who’s Wilberforce?”

    “My uncle. He was kind of a nut.”

  6. I live in an area with lots of deer and, thus, lots of ticks. It is also an incredibly wealth area comprised of folks who have deliberately isolated themselves from much of society. As such, many of them are not forced to deal with the everyday annoyances that most of us call “life”. So what do they do to occupy themselves? Fret over Chronic Lyme Disease! One mother sends her daughters to school in two layers of tights no matter the weather and then wonders why the younger one is fraught with anxiety. Another litters our emails and mailboxes with “new research” about how we’re all going to die of lyme disease. A third sends in her own ‘lyme disease kits’ and says if her child is bitten and anyone does anything to help him, she’ll sue because she only wants super-duper-specialists who can guarantee that he’ll stop the spread of the disease to handle the case.

    • Really? Like I said, I’d never even heard of this, and I live in Lyme-ville. I’m pretty aware of regular Lyme. I actually just pulled a tick out of my son the other day and I’m keeping an eye on the site because it may have been attached for about 48 hours. My neighborhood is middle-class, but it is hyper-educated, and tends to get attracted to X-is-harming-us-and-Western-medicine-has-not-taken-it-sufficiently-seriously (vaccines, BPA, sensory integration disorder, epidurals, sugar/wheat, etc). (Full disclosure: I am cautiously on the sugar/wheat-is-harming-us-and-Western-medicine-has-not-taken-it-sufficiently-seriously bandwagon). I even asked one or two friends about this last time, and they hadn’t heard about it either.

      • Oh, yes, really. It’s not everyone. But there is a very real and very loud part of our parent population that stresses over it. What I don’t get is… why move to a community overrun by deer if you really are afraid of CLD? I think it is a lot of fear and concern mongering, because we also get alot of the vaccine nonsense, the wheat/dairy/sugar stuff*, sensory integration**, nitrates, etc.

        * I can say from personal experience that when I eat less processed wheat and sugar, I tend to feel better. I’m sympathetic to parents who are concerned about their kids intake, especially given that we provide all snacks and meals for our students. I tend to promote balanced diets, high on veggies and proteins, and an “everything in moderation” approach. What drives me buggy is when a parent whose child is clearly somewhere on the autism spectrum insists that everything is fine if he just ate less bread; and I get double-buggy when they insist I deny their child bread but then they feed them bagels because they don’t want to put up with the tantrums.
        ** I think that sensory integration is a real “thing” and that everyone processes sensory input differently. I view it as a spectrum with some folks sufficiently enough at the extremes that it impacts their everyday life. And that for children who occupy those spaces, it is even more difficult because of their inability to control for their environments. That being said, I think it is often overstated and that many folks attribute difficulties to it that strains at basic logic.

        • I wrote a post about Sensory Integration Disorder once. In short: there are real phenomena being described, it’s often an unhelpful way to describe it, many therapies are unproven.

          • Do you have a link? I must have missed that.

            In general, I agree. Sensory Integration Disorder can capture people at complete opposite ends of the spectrum. How helpful is it to diagnose someone with SI if I don’t know if they are sensory seeking or sensory avoiding?

      • Rose, only around 30% of people get a rash or symptoms of flu. This is why people test the tick. Also many do not have any symptoms for years. That is something I wished I had known about Lyme.

    • @ soon

      I’ve had Lyme’s twice.
      Treated both times with short course antibiotics.

      Red Cross took my blood last week

    • Heh. I did wonder to myself if, should certain Events Transpire, I would really want to be thinking about policing my comment threads.

      Oh, well. At least it passes the time.

      • Apologies for the embarrassing typo. Bored is the way your head is going to feel in about an hour from now with the coming comment deluge.

          • Is there a circumcision tie-in? That would do wonders for traffic.

          • Well, if you haven’t seen the most recent research, it is becoming increasingly apparent that circumcision, done AFTER the contraction of CLD, can cure it. However, circumcision done BEFORE exposure greatly increases the odds of contraction. Fortunately, there is a special vaccine that can be offered between circumcision and contraction. Unfortunately, it causes autism 98% of the time. Breast feeding compounds all of these by a factor of four. Formula feeding quadruples all risks and benefits.

  7. This is OT Russell, so I do apologize in advance, since it is really more of a ‘bad doctoring’ story than a ‘using potential woo for political gain’ story, but I have some sympathy for the bitterness of people who feel they are not being taken seriously by doctors.

    Since college, I have had a minor medical condition. Nothing debilitating, just annoying. It was misdiagnosed in college (the vector for the theorized cause was non-existent). Over the years, I saw a couple more docs in hopes of resolving, then eventually just gave up (everybody has ‘one of those things’, right? So you live with it.)

    Anyway, I was doing my initial consult with my most recent PCP, explaining the history, the attempted courses of treatment, etc. Not really even looking for a fix, just giving history / background.

    She looked at me and told me that when she hears someone say they have been to multiple docs and still no resolution, her assumption is hypochondria.

    I was so angry, that I couldn’t even explain that the REAL reason I had seen multiple doctors, was because I had moved frequently (as one does in college/post-college years), and that my most recent prior doc (who was the best doc I had ever had) had left practice to go into HIV research full-time.

    So people who are experiencing real symptoms, even if they are possibly just depression as you theorize, should only be accused of hypochondria as a last resort. Not saying you are doing this, but I imagine it’s pretty common, and it doesn’t surprise me that these patients become bitter and suspicious/conspiracy-minded (‘radicalized’, if you will).

    • Just to be clear, the diagnosis of depression is theorized in the piece I linked to, not by myself. I think each patient’s symptoms deserve to be attended to in a case-by-case basis, and am chary of saying that everyone who suffers from chronic Lyme is merely depressed.

      And, no matter what I suspect with any given patient, I make a sincere effort to treat them all with respect, and their symptoms as real and important. If, when all is said and done, I think there is a psychological component of their symptomatology, I try to communicate that in as caring and non-dismissive a way as I can.

      Nothing in this post is meant to say that doctors know everything or always treat their patients well. I am not such a fool as to believe that. But plucking diagnoses out of the air and concocting lengthy and ineffective treatments for them is doing them no good, either.

      • No doubt that making up a diagnosis and treatment does no one any good, and I don’t doubt you do right by yr patients.

        I can only speak for myself when I say that IMO, more MD’s need to learn how to say, I’m sorry, I don’t know what the problem is, and focus on helping the patient learn to live with it – this is in fact what my prior, best doc ever basically did (he literally said, ‘one of those things’).

        I loved him for that. Great doc.

        Remind me to tell you another time of the doc I went to after the ‘hypochondria’ one, who managed to somehow be worse than that.

        • I’m sorry, I don’t know what the problem is

          It’s hard to be humble enough to say that. Oddly, it takes a certain kind of confidence. I’ve tried to learn how to say it, though I’m not always as good at is as I wish.

          • He really was terrific. Very open, friendly, knew how to seem that he was really interested / listening and not trying to hustle you along, plainspoken and obviously smart as a whip. I have had no luck since finding anyone even close, though I have had a great deal worse.

      • So many of these chronic Lyme disease sufferers get huffy at the mere suggestion that they might be suffering from depression. As a depression sufferer, I can’t decide whether to be offended or amused. On the one hand, it’s offensive. It’s like these people think they’re too good to have a psychiatric illness.

        If you have a bunch of symptoms that look more like depression than anything else–it’s worth getting worked up for depression. It’s not a personal affront. Your doctor isn’t dismissing your pain, she’s offering the best explanation she can think of for what ails you.

        Just because a condition is psychiatric doesn’t mean it’s not a real, physical illness. It doesn’t mean make the physical pain, fatigue, and cognitive symptoms any less real. It just means that these symptoms are being caused by a brain chemistry imbalance rather than an infection or an injury.

        The irony is that depression is a treatable illness. I’ve had it since I was 16 and but I’ve been in full remission for years, thanks to effective drug treatment. These people claim they want hope. If they were rational, they’d be delighted to hear that their symptoms might stem from depression, because at least that’s a disease that can be treated safely and effectively. That’s more than we can say for chronic Lyme disease.

        • I’m not saying that everyone who has these symptoms is depressed. That’s a question that can only be answered case-by-case.

          I’m just frustrated by the vehemence with which so many self-proclaimed chronic Lyme sufferers reject the very suggestion that their symptoms might have a psychiatric component. These indignant dismissals are tapping into longstanding prejudices and misconceptions about mental illness. Those attitudes hurt everyone.

          • That’s how I read you. Of course, it would be unreasonable to claim that every person who believes he or she has Chromic Lyme must have depression.

            I actually start out with no small amount of sympathy for these people. Some doctors can be smarmy, dismissive jerks, and it sucks to deal with one of them. Some doctors have no idea what they are talking about, yet think they do. And it sucks to deal with them, too. And the symptoms they describe sound awful.

            They lose me with their complete hostility toward science and their total nastiness. The name-calling is…unpleasant and unpersuasive. And the ridiculing of depression.

        • This is a great comment. Having had an immediate family member and some close friends who have suffered from chronic depression, and having been through two serious but thankfully mostly-temporary bouts of it in my own life, the only nit I would pick is that it is not always easy or possible to treat.

          Many different medications, in varying doses, may have to be tried; and for some people unfortunately nothing on the market today may work. We are still very unclear on how/why even those medications that work sometimes for some people, actually do their thing.

          But otherwise, yeah. We’ll all be better off when that cultural stigma is gone and having a brain chemistry imbalance is no more remarkable or less ‘physical’ than having an infection that required a run of antibiotics to clear up, or having to take nitroglycerine pills for your heart or whatever.

          I think there has even been some promise with general anti-inflammatories like aspirin being useful in depression treatment/prevention since inflammation and depression appear to sometimes go hand-in-hand – so, ‘joints ache’? Sounds like inflammation/depression.

        • Lindsay: You are absolutely correct that people tend to discount/demean the illness of Depression, as is done with all mental illnesses.

          But when a person who is not depressed goes to a doctor and is told they have depression, they are liable to become upset. When the doctor persists, even after psychotropics have proven ineffective, it becomes a personal affront.

          That this happens frequently with some syndromes shows two things: 1. That these doctors are not seeing them as-they-are but insisting on what is in their own heads. 2. That they really think that the diagnosis of Depression is a vague measure of incorrect perception/behavior.

          This could possibly give you more sympathy for those suffering this syndrome rather than less, because they are not only not being seen for who they are, but are recipient of the very discounting that you likely sometimes receive when you go in for various physical ailments.

          People who have syndromes such as is called “Post-Lyme” will almost always suffer some form of situational depression at some point. It is part/parcel of the grueling ordeal: they feel physically awful, feel worse the harder they work, can’t think very well, are not believed by many, and their lives are falling apart. To be told that this natural reaction is the sum total of the problem, is indeed offensive!

          I wish you the best. It is not simple making a life with Major Depression.

        • “The irony is that depression is a treatable illness. ”

          Some times for some depressions (it’s one of those not-a-single-illness things, or so I understand). My drug therapy keeps mt fairly light depression under control. Ana Mardoll continues to have major problems despite what seems to be the best therapy for her.

          Let’s just say that It’s More Complicated Than That (tm Slacktivist)

        • 5 of my close friends died from this disease in the last 2 years

          it’s not fatigue and joint pain.

          it’s neurological issues , heart issues and every other symptom you can imagine it disables and kills patients

          for any one to even consider depression to be the cause of this is insane

          it’s possible a small handful of patients may think they have lyme.. but the ones I have seen are seriously ill and lives are at risk from this disease

      • The cool part about the diagnosis of Lyme, is that there are actual verifiable test results.

  8. Whatever chronic illness(es) these people have, being supercilious is your professions’ disease. When a majority of overly-busy medical professionals won’t agree that there’s something profoundly wrong, but generally offer “emotional support”, one-a-day, and a rec to see a psych, then people will naturally become upset. Particularly when they have become a shadow of their former selves or have seen a loved one become so.

    It is not these people’s responsibility to know what’s wrong with them. Insomuch as your field doesn’t know either, at least have the humility to say so. You tell angry commenters to cite research. But each is N-of-One, right? Never anything more than anecdotal.

    I have a recommendation. Why don’t you write a series of interesting proposals on what might be wrong, and put together a procedure for these ill people to follow, one that might help them find a path to follow through your professional landscape, with a cornucopia of citations that would reassure them of the medical field’s concern for the conundrum that they offer?

    There is little virtue in hovering at the thread end of a post such as yours, waiting for the onslaught of the ignoramusseses, smug in the knowledge that they are as idiotic as Romney. One might almost think you are bored.

    • Yours is an interesting comment, Patricia.

      Commenters on my posts are not my patients. I cannot craft some kind of series of proposals to help people I only know in the space of a few paragraphs on the Internet. Those who come to see me in real life I help as best I can.

      Citations are not meant to be sources of comfort. They are meant to be sources of information. If people take comfort in being informed, all the better. But scientific study is what undergirds the practice of medicine, and if the plain facts are not comforting, it is neither appropriate nor even helpful for me to pretend they say what they do not.

      People are entitled to think what they will about the medical field. It is not the point of this post to make people change their minds when their opinions are well-established. The point is that the man seeking to be elected President of the United States is perfectly happy to ignore the NIH, CDC, etc. when doing so may potentially sway a few voters in his direction. Which strikes me as truly appalling.

      • It makes sense that you can’t see clear to craft a series of doctorly proposals, because medical treatment is N-of-One, which is as it should be, as much art as science. :-}

        But the problem of your post is that you provide a number of citations that knock down the only medical avenue offered to people with this particular set of symptoms. “Post Lyme Syndrome” is a dump-all that means nothing and offers nothing. And when it is accompanied by condescension, an emotional allergic reaction is predictable.

        You don’t see the kind of rage in, say, people with multiple sclerosis, another illness of uncertain origin. This is because the field doesn’t dismiss that set of symptoms. Recognition gives people who suffer it a hook on which to hang their hats, a way to proceed with collapsed (or partially collapsed) lives. As a group (always exceptions of course), they go through the usual anger, grief, depression, and slow acceptance without becoming enraged at the medical field.

        I think citations do create comfort. You find comfort in your citations because it settles your understanding. I’m not talking about that kind of comfort, though–the comfort of intellectual resolution–but rather the reassurance that comes from seeing intelligent compassionate people recognize a genuine problem and research it. Even if they aren’t “getting anywhere”, the fact that there is ongoing work offers a place for the bewildered/bereaved/beset individual left out in the cold. People with “Post Lyme Syndrome” don’t have that.

        Yes, people, being free, will form their opinions–every single one of us does, and very stubborn we all are, too.

        Politics is incredibly cynical these days. I suspect that Romney pulled the Lyme controversy out of his a** because Obama has blown sweet-nothings at Chronic Fatigue Syndrome http://chronicfatigue.about.com/b/2012/09/18/friends-in-high-places-for-chronic-fatigue-syndrome.htm

        But I doubt you need worry about Romney being elected. From his ambulatory schedule/focus, it seems to me he’s simply roaming around refilling party coffers. Obama is doing well enough for the powers-that-be. All the rest is smoke.

        Enjoyed conversing with you.

        • The difference between multiple sclerosis and chronic Lyme is that the existence of the former has been verified by extensive study, and the latter has not.

          I’ve posted on this kind of problem before. There are lots and lots of things that medicine cannot do, and questions it cannot answer. I have no doubt that the people who are diagnosed with chronic Lyme have real symptoms, many of which are hard or impossible to explain. But the best thing is to keep looking, not to give them an ersatz answer.

          • ” I have no doubt that the people who are diagnosed with chronic Lyme have real symptoms, many of which are hard or impossible to explain.” Then why did you not put that clearly in your post? Up at the top for all the suffering people to see? Because most doctors don’t act towards their patients as if they believe that.

            You wrote that multiple sclerosis has lots of verified study behind it, but chronic lyme doesn’t. That’s exactly my point. Whatever “chronic lyme” is, there is little conventional research going towards it–almost all of it goes towards proving what a small bunch of people don’t want it to be. It sets out to prove it’s own negative point and that is no real accomplishment. What a waste of ever-waning endowment and grant!

            Ok, I have to go.

          • Perhaps I wrote imprecisely. I have no doubt that many people who are diagnosed with chronic Lyme have real symptoms. I do not believe they have symptoms due to chronic Lyme. Their symptoms may be due to any number of ailments or conditions, none of which require protracted treatment with antibiotics.

      • While you hold tightly to the NIH and CDC, you do realize further research has come out. Romney’s wife is sick with it, so he problably sees it from a perspective that you will never see it from. It is well known that experience will often override what one has read.

  9. You do understand it’s an oxymoron to state ‘good company’ and IDSA in the same sentence!

  10. Who are you? What is your ‘name’ where do you practice , who licences you?
    Anyone can spew crap and fling it, I can do it with the best of them. I am using my real name who the hell are you ?

    • If I was a physician and patients came into my office cussing and spewing crap at me as is being demonstrated here on this blog and many other places, I’d kick them out. Lyme patients only have themselves and their leaders to blame for this mess of a controversy.

  11. I am sad to see someone proclaim with such certainty that there is no such thing as “chronic lyme disease”

    To put such a rigid template on a pathogen we barely understand is bad medicine.

    Borrelia Burgdorferi also known as “Lyme disease” is a cousin to Syphilis. A bacteria around since the late 1400’s that caused insanity and people were once told didn’t exist. We know now that it is also vertically transfered from mother to child and that it is sexually transmitted as well. It wasn’t until 1908 that it was better understood, due to advances in modern medicine and much , much later officially identified. It was a burden on humanity and much misunderstood. So too is Borrelia Burgdorferi.

    Why in a time where we still practice 20th century medicine in the 21st century would you think we have it all figured out? How arrogant and foolish. CDC and IDSA are cruel in their guidelines and arrogance. We live in the dark ages of medicine and know NOTHING about the BRAIN and IMMUNE SYSTEM. We are “practicing medicine” To proclaim with such certainty you know this disease is foolish. WE DO NOT UNDERSTAND THE CORKSCREW BACTERIA NAME BORELIA BURDORFERI.

    • If we know nothing of the brain and immune system, then by what happy accident have these few practitioners come upon their strange expertise? Antibiotics are not some arcane magic, available to the chosen adept. They come from the exact same scientific community that does not recognize the existence of chronic Lyme disease.

      Just because we don’t know everything about the brain and immune system doesn’t mean that we know nothing.

      Syphilis will indeed cause horrible problems if it is not treated. Thankfully, it is a curable disease. Like Lyme.

      And it does not strengthen one’s argument to hit the “caps lock” key.

      • You misunderstand, Russell. Of course we know a lot about the ‘brain’.

        What we don’t know a lot about are the Bacterial Radiological Aerial Infectious Nematodes that menace us all.

          • I can’t lie, it *was* moderately entertaining. But probably uncalled for. I’ll save the snark. If you or someone you love is suffering I don’t mean to make light of that.

    • “We live in the dark ages of medicine and know NOTHING about the BRAIN and IMMUNE SYSTEM”

      Really? Awesome.
      /throws away medical immunology text
      //orders more leeches and mustard poultices

  12. Those in the IDSA are not morons. The few that run it are very powerful in the medical field. One small change in thier guidelines can literally mean hundreds of millions of dollars for a drug maker. These drugmakers spend huge sums of money to influence those few doctors. Doctors who applied to be an IDSA member who treat Chronic Lyme were all denied admission. Thier studies and years of work is knowingly excluded from the IDSA guidelines. It can take 20 years for chronic Lyme to develop. Syphillus is caused by a similar spyrochete bacteria. They are shaped like corkskrews and they literally ‘drill’ through tissue. They prefer lower oxygen enviroments so they exit the bloodstream this way. Thats why the blood based test for Lyme they use is not reliable. A negative Lyme test means little. There is a more reliable test but they don’t recommend that one for some reason. ( On a side note, one of the Doctors in the IDSA has a patent pending on a new Lyme test. Conflics of interest are not dealt with. ) This damage adds up and can take 20 even 30 years before the person cant walk, or experiences severe pain from bacteria literally eating your nerves.

    Ever hear about those infamous experiments where African Americans did not recieve Syphillus treatment while others did. Both groups were studied for many years. Many without the Syphillus treatment developed severe chronic ailments much like Chronic Lyme 20 to 30 YEARS after they were infected. Syphillus has been called ‘the great imitator’ because it can look like numerous other diseases.

    • You can’t be serious. The treatment for Lyme recommended by all reputable sources is a few weeks of cheap, generic antibiotics. The ones making the money are the ones who keep their patients on unnecessary, lengthy courses of faux therapies.

      Perhaps more reading is in order?

      • No, the one’s making money are the ones suggesting that doctors should put patients on antidepressants. Cheap antibiotics don’t make them much money.

        • Nonsense. For starters, read some of the federal indictments and stories covered by the Chicago Tribune. ILADS doctors are making millions, every single year. Some of them are charging thousands of dollars a month just for intravenous antibiotic treatment oversight fees.

          • And wanna take a stab at how much depression meds run, upwards of $1,000 a month for people. Pharma wants people on depression meds. Pharma puts big money into getting people on them.

            Doctors, in general, make very little money…especially compared to pharma. So, sorry, you have stopped making intelligent arguments.

      • They pharmaceuticals are making money by ignoring this disease

        Why recognize a potentially curable disease when they can say you Fibro , MS , or Chronic fatigue and treat you for life

  13. I have a question for those who are commenting here:

    How did you happen upon this blog? I’m truly curious. I have the sense that people are looking for people like Dr Saunders to correct, but perhaps not. If so, though, why? What is the hope? If not, why did you seek this idea out?

    I’m sincerely interested… fascinated, even. Medical posts, whether about Lyme, circumcision, breast feeding, etc, always get this kind of response from folks that I’m guessing have ever been here before and don’t really intend to stay long. I’d love for someone to share what they seek.

      • My hunch is that Google alerts or something similar might be part of what is leading folks here on these particular hot button issues.

    • The Lyme patients came upon this blog because they were instructed to crash it by their fearless leaders. Founders of LymeDisease.org and the Lyme Disease Association, as well as others monitor the Internet for commentaries about Lyme disease. When they find one that is contrary to their views, they post the link and instruct people to comment, crash it. I guess they consider it as free speech. This is one of the games that they like to play, along with spreading conspiracy theories and paranoid thoughts of how it is unsafe to even touch one bare toe onto a blade of grass in your front lawn without acquiring a disabling infectious disease.

      They are not looking to correct Dr. Saunders. They feed off of harassing him. They are angry about whatever ails them and instead of doing anything productive, they have sought out to completely alienate nearly every last sane medical professional in existence. The only end result is that even fewer physicians want to see such patients.

      • I found it because of the article written as though it had Lyme research. Normal people engage in conversation, and are willing to be wrong and open to new information when presented. Not so here. What I wonder is why the retort was posted, why the egotisical steadfast stance? Seems to me R.S. wants attention and is thriving on it. Like a child, lacking enough parental love thrives on negative attention if it is the only attention he can get.

        • Sorry, I’ve been around the Lyme controversy long enough to know better. I would post direct links to where people are being instructed to crash this blog, but I don’t want to give them the attention they so desperately are seeking. They are like children, lacking parental love and thriving off of the fears and money of suffering patients. They enjoy the attention they are getting when they return to their hollows and proclaim they have dutifully crashed another blog or news article.

  14. I occasionally blather at the end of Kyle Cupp’s Alterity. I saw the post under “Around the League” and since I have a daughter who had Lyme that took 2 yrs to treat, I jumped in.

    Now I really have to go or I’ll be late. Bye

  15. Before you read this…know that I am just as against Romeny as you are…also, I am neither advocating for or against antibiotic treatment for lyme or for one name for the condition or the other name…so I hope you will read this in the light of a reader sharing insight fwiw (because none of ya’all are right)…that said:

    Clearly, Laura Helmuth, you have never had lyme disease.

    That said, while I get your outrage/concern (not exactly sure which it is you are expressing here but take it that you are expressing both), you also clearly haven’t done your research very well. Perhaps I can help shed some light. Lyme is a bacteria that can change its state, go dormant, and hide inside tissues and surround itself with proteins so that it cannot be reached by antibiotics in the blood stream. Also, if you had done any research you would have realized that antibiotics can only kill lyme at a certain stage in its life cycle. So, taking antibiotics for 2-4 weeks (as you are expressing is all that is needed) will only ever kill those lyme bacteria at that specific stage in it’s 6 week life cycle…the rest, for obvious reasons, are not killed and will live on to continue to reproduce. In other words, the lyme disease treated for 2-4 weeks with antibiotics is not fully eradicated…despite some claims made to the contrary. Again, quick research into 1) the life cycle of lyme bacteria; and 2) what the various antibiotics actually do would have readily revealed this discrepancy to you. This details the controversy that some doctors and patients are making.

    However, you also failed to see that the issue you wrote about in this article has nothing to do with what patients and some doctors are arguing. In other words, you failed to notice that what the CDC et al are arguing over is the “name” in which they are going to be calling what is happening which is (again for obvious reasons) continued lyme disease after initial short term antibiotic treatment…and that the specific argument is over whether they will call it “post” lyme treatment lyme disease or “chronic” lyme (or whatever other strange and not truly characteristic name they care to give it)…and that they are NOT in any way arguing that it does not exist, only what they are going to call it. For what it’s worth, there is also a “post polio syndrome” that occurs after initial polio infections cleared up…and “shingles” after chicken pox clears up.

    That said, you mention fibromyalgia and chronic fatigue syndrome…*shakes head at your lack of knowledge and lack of research*…you do know that chronic fatigue syndrome is the result of unresolved or latent epstein barr virus and that fibromyalgia has been found to be caused by chronic herpes simplex virus…which that later likewise responds favorably to antivirals. And I am surprised that you were suckered into the rather bizarre advertising campaign regarding depression. Depression is an issue concerning either dopamine or serotonin (both of which can be readily tested and proven…yet, they do not routinely test before writing out those countless prescriptions)…and the very strong medications for said clinical depression are far more expensive and just as long term (if not longer since they are usually given for life) than an extended course of antibiotics…and that pharmaceutical companies have a clear vested interest in getting as many people on depression meds as possible as it is perhaps their best source of profits.

    You also must realize by now that most of America is sick with something that doctors are short on answers for…and that doctors and western medicine really knows very little about the things that are going wrong with people’s health. Even a cursory jaunt into research of auto-immune issues on the Wiki will show how hopelessly behind science is in these matters of our health. Indeed, western medicine has all kinds of concoctions to “suppress” symptoms, but still has no idea how to help the body “heal” much less ever bother get to the bottom of *why* something is occurring much less fix the causation. Knowing how little doctors and western medical science really knows, it is no surprise to me that the egos of overwhelmed doctors have their own vested interests in blaming patients rather than admit that they just don’t know. Your argument in this article is one of “theory says that patient cannot still have lyme after 2 weelks of antibiotics so that if said patient is still sick it cannot possibly be lyme…even in the face of solid evidence that patient still has active lyme infection raging on.” Well, you know, I remember when AIDs was first discovered…people thought you could catch it from touching others or from the air people breathed. I remember kids with AIDs from transfusions being run out of schools and harassed in their homes. Thank goodness we have come a long way in understanding AIDs in the last 30 years. I strongly suspect that 20-30 years from now we will know far more about lyme disease and the effect of late stage bacterial as well as viral infections and the havoc that they can cause to one’s health. Until then, however, I hope that you would have the common decency to encourage science to find more answers rather than seeking to shut down further research as you may one day be a patient with “mystery things” going wrong with your health and inadvertently forced into an all too familiar situation patients today face.


    • Hello, Faith. There is a great deal of stuff in your comment, and I apologize that I do not have the time to go through it line by line in response.

      I will say that, regards “post-Lyme syndrome” vs “chronic Lyme syndrome,” the salient difference is that the CDC advises that the former is a self-limiting condition that requires nothing but supportive treatment for ongoing symptoms. It may take some time to resolve, but the lengthy and harmful antibiotic regimens prescribed by chronic Lyme practitioners do no good, and quite possibly a great deal of harm. The exact kind of harm that Romney feels they should be shielded from tort for causing.

      I have nothing to say about fibromyalgia or chronic fatigue syndrome, as neither are pediatric diagnoses and I have no desire to fight those particular battles.

      Edited to add: Not that it matters much, but I have actually had Lyme disease, which went away entirely with the appropriate treatment, exactly like I would have prescribed myself.

      • Russell Saunders,

        Again, you are not understanding the issue of “naming” the issue at hand…this is an extremely important distinction. So, for the benefit of the readers who may not understand…there is “early stage lyme” or “stage 1 lyme” which is what one has in the very early stages of infection. Some (30% I believe) have a rash and/or flu-like symptoms. Now, early stage lyme clears up VERY well with immediate antibiotic treatment for aprox. 2 weeks. This is in line with the CDC.

        Then there is “stage 2 lyme” or “early disseminated lyme infection” in which the lyme bacteria has begun to take hold often affecting joints (where antibiotics cannot travel) and the central nervous system (where only specialized antibiotics that can cross the blood brain barrier can go).

        Then there is “late stage lyme” or “stage 3 lyme” in which the lyme bacteria has been in a person for years. This is possible because a large number of people infected with lyme never see a tick, have a rash, or have flu-like symptoms. Late stage lyme tends to attack the heart, the central nervous system (creating symptoms very similar to MS even sometimes including brain lesions), and joints. The hallmark difference between lyme arthritis symptoms and classic arthritis is that classic arthritis tends to attack the smaller joints (like fingers) first whereas lyme tends to attack large joints. Again, there are no antibiotics in existence that can penetrate joints. Late stage lyme is more similar to shingles many years after a chicken pox infection. Some very elderly patients cannot seem to clear their shingles and as it has a very distinctive rash it is hard to deny.

        Now, where the issue comes in…and where there is controversy…is in the “name”…many doctors, including apparently you, misinterpret “late stage lyme” with “chronic lyme”…chronic lyme is very specifically, according to the CDC, lyme that continues to exist after 2 weeks of antibiotics. Whereas late stage lyme is simply lyme that has not yet been treated. Lyme cannot, at least not according to the CDC, be called or classified “chronic” until it has been treated. So…you are attempting to discount what is being raised (apples) with oranges. If you are a doctor, you have diminished your credibility by your inability to read and understand what it is that you are reading…thus, calling into question your understanding of the CDC. I also bet that you do not recall what the CDC used to say about AIDs, for the record…while they tend to reflect clearly yesterday’s best understanding, they do grow and change as new and more information comes in…reflected in their continually (albeit slightly delayed) updating their stance on the treatment of AIDs, so too will they update themselves (albeit aprox 5 years behind the research) regarding lyme as new information comes in.

        Now, I will give you that there are two (2) inherent dangers to long term antibiotic treatment, but, with careful planning, care, and adherence they are easily prevented. The first main danger is GI super infection which is easily prevented with daily probiotic treatment in addition. The second, more questionable danger (of which I am surprised that you, a staunch CDC adhere-er would even dare type) is an overgrowth of candida yeast that is theorized to potentially cause a systemic infection…but, is also easily prevented by patients adhering to a candida free diet while undergoing antibiotic treatment. Now, if you can add a serious danger beyond that…then maybe you have something worthwhile to add, but I will guess that when you mentioned “danger” of antibiotic treatment that you were merely mindlessly parroting rhetoric put out by the CDC and not doing your own research. And, we all know, the less one knows the more opinions they espouse.

        At this point in history, we do not know how to deal with (heal) shingles, late stage epstein barr virus, herpes simplex, or late stage bacterial infections like lyme. We simply do not know what we do not know (yet).

        In addition, there are many co-infections associated with lyme. Whereas a person’s lyme may be treated and reversed, a person can continue to be infected with one or more of the co-infections indefinitely. However, because we do not talk about those other infections as separate things, but rather lump them under the heading “lyme” this too accounts for much of the controversy.

        Lastly, only a fool has ceased to question their ways. And personally, I would very much not appreciate a doctor like you (if you are indeed a doctor) as new information is coming out daily and I would like any doctor I see, or who treats me, to stay on top of the latest information and not be so…hmm, what is the word here…something between cowardly, lacking balls, and unintelligent as to wait for the CDC to tell him what to do. Personally, I pay doctors for their brains and judge them on their ability to think for themselves…to apply logic and reason (again, here, lyme’s 6 week life cycle and your 2 week that you generously try to up to 4 week treatment plan…logic, simple logic…missing in so many people…even those who would masquerade as doctors).

        My guess is you had early stage lyme, probably diagnosed from a rash, and wonderful for you that it cleared up. However, it is pure projection for you to say because yours was treated successfully that all patients everywhere can be treated the same way with the same success.

        • PS…forgot to add, that the CDC is in-battle with the other organization over the term “chronic” or “post” lyme. Again, that doesn’t mean that neither department denies that some form of lyme continues to exist after treatment, only that it is not what the other is calling it. You have to read more carefully than you have been. And, do your research.

        • I find the claim that antibiotics cannot reach joints dubious, but not being a doctor, I may just be missing something. Am I?

          • There is not as rich of a blood supply in areas of the joint making it more difficult for antibiotics to reach

  16. I find your demeanor rude and egotistical. You choose which articles to read and site without investigating further information that is readily available, ex. http://www.ilads.org/lyme_research/lyme_articles11.html. You might possibly be a shill for the insurance industry, a blogger for the election campaign, or simply an uneducated and discompassionate physician. Even my own doctor tells me that more is unknown about Lyme than known, and all bets are off when predicting how it will manifest. He’s a Berkely trained, 30 year long GP, with thank goodness, a quest for knowledge , and compassion. I believe, although Lyme has been around for some time (and perhaps even found in the dug up, historical Ice Man), the understanding, patient-centered care, and treatment options are as primitive. Or Perhaps it’s a newer biological weapon, a cesspool of bacterial infections concocted on Plum Island, Ground Zero.
    Either way, it’s certainly reached epidemic proportions, even the Red Cross blood bank doesn’t want “former” Lyme victims’ blood. It’s time to stop treating patients like they are crazy, their health care team like convicts; and time to educate about it, research vigorously, and treat people who suffer from Lyme well, and better understand its possible, and probable, long term health consequences. It feels similar to the early days of HIV-AIDS, when so little was known, including its mutating ability.
    It would be so easy to wish you got Lyme so you would understand what people with Lyme, or Lyme Syndrome, go through. Instead, I hope you become a true healer, versus an over-educated, lettered professional. There is a difference between doctor and healer, and it starts with curiosity, compassion, and dedication to helping patients by finding answers and offering treatment, not ridicule. Good luck on your journey. May you become a better doctor quickly. -Z.A.

    • Hello, Soon Award. I have looked at the information included in the link, and there are no peer reviewed studies that I can see. There are a few published first-person accounts of symptoms that the patients themselves describe as chronic Lyme, but nothing that amounts to an actual study. I regret that I do not find your evidence compelling.

      Edited to add: Biological weapon? Plum Island? I’m sorry, but I have tremendous difficulty taking your viewpoint seriously after reaching that part of your comment.

      • His comments are sad, but so true. You should take him seriously because these are the conspiracy theories patients are being taught by their licensed medical doctors. Those ‘Lyme-literate’ medical doctors who founded ILADS. Patients are repeating what ILADS doctors have told them to repeat.

        The problem is that those other doctors seem to hide behind their patients, letting the patients do their dirty work for them. They like to let their patients pay for their medical board investigations and medical malpractice attorney fees as well.

        • Thanks for the link, Paul. There appear to be a few interesting studies there (none appear to be particularly recent), and they do at least seem to be relatively recent. Some appear to be isolated case reports (mainly orthopedic), and many more appear to be about accuracy of various testing modalities. Several seem to have nothing to do with Lyme disease, or the species of bacterium that causes it, and none seem to document the kind of symptomatology that is attributed to chronic Lyme.

          But it is, at least, the first list of real citations I’ve actually seen.

          Edited to add: Boy, this is why I shouldn’t compose comments on my iPhone when I can’t sleep in the middle of the night. I’m not even sure what I meant to say in the second clause of the second sentence. Anyhow, yes, these are definitely a few citations, which is nice. They do not add up to a body of evidence that verifies the chronic Lyme diagnosis.

      • You continue will your tone of ego. That article was simply an example of one of many thousands of articles available if you would simply demonstrate some scientific curiosity. You protest too much, and are far too invested in your anchor theory that chronic Lyme does not exist. Furthermore, outright dismissing Plum Island is interesting, too. I am not saying it is a biological weapon, but have you actually looked at any information on this possibility? You cite peer reviewed documents as your only recognized evidence. Again, this is another self-limiting belief. There are other forms of knowledge. Have you read Cure Unknown? Watched Under Our Skin? These are stories written about people who live it. Convulsions, lesions, debilitations and numerous other syptoms are surely not caused by depression.
        I might agree with you that people who are ignored, misdiagnosed, refused treatment, for profits over care (now that is a wild idea in our current medical model), and ridiculed might indeed suffer from depression. Your article or knowledge on co-infections, many which cause psych symptoms, including Bartonella, or Cat Scratch Fever, is limited. How does a variety of diseases work together, as seen in biofilms (and no that isn’t a movie you watched in med school), infect and impede healing?
        Depression in Lyme patients isnt the cause, it is another symptom. Jeese. This might be similar to many other patients who unfortunately bear the burden of being on the front edge of an emerging epidemic.
        Below, others have offered you additional material. It’s amazing these studies exist at all, considering the preconceived ideas, and vested interests that limit vigorous exploration of this disease. Did you know for instance that 7 the 9experts defining Lyme Disease, for the CDC, had close financial ties to the insurance industry? Would not be the first time that profits over patients reared its ugly head in America. Perhaps you might work for them too? Or maybe you are that pompous ass involved with Infectous Disease at Maine’s largest hospital? Your limited outlook, lack of curiosity, and work seems familiar.
        You glide over information you choose to ignore, and hang on like an angry dog to snippets you can easily dismiss or ridicule. I find your lack of curiosity disturbing. Thank goodness you didn’t go into research, a Jonas Salk you are not.
        As your children play in the tick-infested woods of New England, pray they are well covered with bug spray, because if they get Lyme, that is misdiagnosed or missed you may soon be dealing with your own depressed child. By the way, your blog does little for your image as a doctor, must be why you use a pen name.

        • In a striking coincidence, “Tone of Ego” is the name of my first album.

          Edited to add: I don’t know which pompous ass you’re referring to at Maine Medical, but none of them are me. And I haven’t lost a whole hell of a lot of sleep worrying about my image as a doctor, but I appreciate your concern.

          Further edited to add (because I just can’t stop myself): You are aware that cat scratch disease is a self-limiting illness that requires no treatment in most cases? Your mentioning it is perplexing, and hardly bolsters your case.

  17. This is truly pathetic as a play for votes. Usually it’s the fringes of the flakier parts of the left that adhere to the anti-clinically-tested-verifiable-medicine, pro-snake-oil positions. Another sign that Romney will do pretty much anything for votes at this point.

  18. Now that I think about it, how likely are the Lyme Voters to show up on election day itself?

    I mean, it’s like pandering to the agoraphobes. Sure, they have voices that need to be heard and all but how likely are they to leave the house *REALLY*?

    Pander to the OCD folks. Point out how your name is a square and your opponent’s name is a prime. Watch the sparks fly.

    • Well, that depends.

      East Lyme or Old Lyme?

      I had to go there. Really.

  19. Most of the herbalists I know use a tincture made from a hanging moss/lichen called ‘old man’s beard’ to treat lymes disease.

  20. While I am sure in your pompos, you will discount this. However, here is an old PDF.

    Direct you to the very bottom of page 13 on on in which he details what tests have revealed regarding each of the various antibiotics. Earlier in the document he cites other things that could be the issues and/or contribute. While I do not advocate his treatment protocol, it is one citation.

    Before you denounce it for not supporting your opinion, read the section detailing the antibiotics and be willing and able to give scientific reasons and citations after his printing, be specific…if you can support your claim, great. If not, accept that you in fact do not know, that you were quick to react, and that you still have much to learn.

      • Not embarrassed to use my real name at all.

        as a Chronic Lyme patient dealing with this infection for 7 years I am fighting for my live

        do you think I am afraid of posting my name on the internet?

        Here is a news interview I did a few weeks ago on fox that also has my full name.


        Afraid? you are sadly mistaken

        we are in a fight for a lives so what could we possibly lose by raising awareness?

        • You are doing a lot more than raising awareness. You are actively participating in a cover-up of physicians, some of whom are breaking federal laws. You are actively choosing to mislead patients towards medical providers known to be endangering other patients. Forget the antibiotics. Some of these Lyme doctors have been sexually abusing their female patients during their medical appointments, and the activists cover for them. What sick and twisted direction being given by the Lyme disease associations. To cover up for a sexual assault? *&^^$#$%^!!!

          ALS patients being told that they have chronic Lyme disease! People who lead unfortunate ALS patients towards useless and harmful chelation and other treatments are morally bankrupt, but embraced by ILADS and Lyme activists. ILADS leaders state they can bring an ALS patient to 90% recovery in less than 10 minutes. Hogwash. You’re a fool if you think they don’t use that same line on their other patients as well.

          What harm? You are perpetuating the exploitation of patients. It’s like guarding the door while the rapist is inside doing the raping. Apparently you are comfortable with that.

          • Wow, you are so into conspiracy theories you have stopped making sense. Like someone else in this thread challenged. Silly Gameplaying Activist, you saw Paul on the news…you can see how sick he is…*what* in your infinite wisdom would you reccomend he do? Where and from who should he get help? If he goes to the not really a doctor here, he will get depression meds…did it look like depression meds will help him? He stated he was willing to pay for treatment he thought was better than insurance offered…does he not have a right to purchase what he likes and feels is useful? Or, to try to win this argument, would you seek to harm Paul…? Your angry Silly Gamer, your need to be right to the point of hurting people…that is just really sad. Please don’t breed.

          • ALS patients get a death sentence

            Many have survived after finding out the cause was lyme disease

            as I mentioned we are patients fighting for our Lives. We can’t control what a small handful of corrupt doctors do.

            You my friend are causing the death of patients and I am saving lives

  21. Interesting approach, asking a licensed and practicing physician to argue points with an old document written by an ex-physician who is no longer in practice because of his negligent treatment of patients.

  22. Articles like this are killing patients and we are not Afraid to speak the truth

    this you will learn soon enough.

    We are in the fight for our lives and will not stop until this disease gets the attention it deserves.

    5 of my close friends have died from this disease in the last 2 years… Afraid?

    I’m afraid I may die if I don’t speak out

    • Paul, thank you for all you are doing to raise awareness. I really appreciate what you said on the news…and thanks for this link. Over the last four years I have grown increasingly sick to where I am mostly bedridden and can barely walk. My symptoms have largely been neurological until the last year in which I have been in increasing amounts of pain. My thyroid became a causualty of my previous (a lot like this so-called) doctor’s quest to figure out what was wrong with me. As a result of the chronic underlying and up until recently undiagnosed illness, I do not process my thyroid hormone and was told that I would slowly become sicker and die…as one cannot live without their thyroid and no one could figure out what was wrong. I might of even agreed with this so-called doctor about it being something other than Lyme IF anyone had half a clue, but as he offered none chalked him up as another doesn’t have a clue and too egotisical to admit it. I eventually changed doctors due to insurance change and only on a weird fluke did she test me for Lyme and I was positive. While I would like that two weeks with antibiotics should cure me now that we finally have an answer, I cannot help thinking the damage is permanent. And, I cannot help being angry at my previous doctor for NOT having a clue, because had I been tested when I first came to them I probably would have gotten better and I certainly wouldn’t be in high levels of pain or having trouble walking. Jerk offs like the guy with this blog, he doesn’t have a clue…I think he has to believe as he believes because otherwise he’d have to face what my previous doctor now has to face, that he in his not-knowing caused me damage…and by removing my thyroid needlessly increased my chances of mortality. I don’t believe any doctor wants their patients to suffer or to make them sick, just that when they are arrogant like this guy and too busy defending their beliefs (the defense suggests that he already knows he’s wrong subconsciously), what results from that arrogance is that they stop listening to their pateints and their patients become sicker. As for me, I have been four weeks into my antibiotics and I am still just as sick as when I began them. This jerk off says it takes a while…but yet refused to elaborate or give suggestions what patients could do…again suggesting that he really doesn’t know squat. Anyways, thanks Paul…was really touched by your continued trying to be a voice. Thanks for all you do to get the word out. If only I had known…that not everyone gets a rash, if only I had known that it wasn’t like the flu, if only I had known that Lyme crosses into the brain and attacks it…but I didn’t. That’s what doctors are for. That is why it is important to raise awareness of what Lyme really looks like.

  23. Legislators are not doctors and they are not scientists. The Lyme doctor protection laws are in place because of politics due to the ranting and screaming hysterics of certain confused Lyme leaders. You do not want a politician deciding how to treat an infectious disease. You are going about the activism in the wrong ways. Your actions and the protection of these doctors are harming other patients. Those doctors are harming patients and when you cover up their negligent actions, you are harming other patients.

    You think being indicted by the FBI is a joke? I bet the Rysers, and Catherine Helms aren’t too amused with them right now. May they rot in jail if they are found guilty.

    • Like you. You are doing a lot of ranting and screaming “conspiracy theory”…imho, you are the only nut job here. Breathe. Walk away from your keyboard and breathe. Get a grip. And pray you don’t get Lyme. Then get some sleep.

    • I think there are good and bad doctors treating any condition.

      Continuing to ignore the existence of a persistent infection that is ruining the lives of 1000’s of patients is just evil

      I don’t know what motivates you

      but I know I will be able to sleep just fine at night.

      Politicians don’t just make laws for fun.. this entire article and thread is a complete joke there is science to support all our claims

      Do yourself a favor and find something productive to do with your life instead of harming chronically ill patients.

  24. So. All this week, any comment thread at the League where I’ve checked the box to update me with an email with a new comment hasn’t worked. Until this thread.

  25. If I could go back in time right now, the first thing I think I would do would be to travel back to 1982 and convince Geddy Lee that RUSH really, really needed to make a Chronic Lyme Disease concept album.

    I think that would be awesome.

    • There is unrest in the forest
      There is trouble with the ticks
      For some say that Lyme is Chronic
      Others say that they’re just d**cks

  26. I don’t get why anyone who has not had chronic or late stage lyme disease would want to have such a vehement opinion about it. This begs the walk a mile in his/her shoes saying.
    Not all chronic or late stage Lyme was previously treated, just so you know. Many of us went years (20 for me) mis- or under-diagnosed before finally finding a doctor who would listen and test (and know how to interpret the test.) After 20 years of it digging into my body, a 2 week run on antibiotics wouldn’t help much. I just took 2 weeks of antibiotics for a middle ear infection and it did not touch the Lyme. Many of us who have had it a long time have organ damage, especially adrenals from the long fight, and liver damage. I also have genetic problems with detox and allergies to antibiotics, so I am not pushing for long term antibiotics. But what I would like to see is for this bickering over the existence or non-existence of late/chronic Lyme to stop and for people to instead research what can be done to stop the suffering, and to give the patients support instead of attacks and arrogance and belittling. Recently I was diagnosed with cancer and went through surgery and radiation. I was stunned at how differently I was treated, having cancer, than all the years of having Lyme. One of my doctors actually said (the surgeon) that it was likely the lyme contributed to why I got the cancer because my immune system was so down. I was treated with respect and compassion. No one accused me of making it up. People came to help me post surgery and bring me food. Why would anyone want to make up having Lyme given the lack of treatment and compassion given to such patients? People are sick, very sick. And if you don’t want to call it Lyme, figure out a different name, but research it and treat the victims with compassion! Doctors supposedly take an oath to do no harm. Ridiculing people who are very ill is quite harmful.

  27. I believe the most important issue mentioned in this article is contained in the following sentence: “I think physicians whose practices are dedicated largely or wholly to treating “chronic Lyme” are charlatans, and unhappy patients should have every right to sue them when they realize they have been victims of chicanery.”

    The author, whether a physician or not, fails to suggest what rights people who suffered with Lyme Disease and other tick-borne illnesses for many years before finally finding a physician who offered effective treatment. Fortunately there are compassionate physicians who take seriously their responsibility to relieve suffering. They recognize that real physicians treat the patient, not a blood test result. Clearly, this author is uninformed and chooses to maintain his close-minded attitude.

    Because he apparently lacks the intelligence and creativity to recognize he should never stop learning it is doubtful there will ever be a newly-discovered disease or treatment named after him.

    • So if, in the absence of any objective evidence, I started a patient on a lengthy course of vinblastine for a cancer they didn’t have, would I be treating the patient properly? If, in the absence of anything that actually confirmed the diagnosis of diabetes, I put a patient on an insulin drip, would I be treating the patient in a compassionate manner?

      Yes, there are compassionate physicians who take seriously their responsibility to relieve suffering. And then there are those who fleece their patients by using vague mumbo-jumbo to diagnose an illness with nothing to support that conclusion and put them on protracted courses of antibiotics (many of which have no efficacy against the bacteria they are purportedly treating). You have the two categories confused.

      • If by “objective evidence” you mean only a quantitative test (e.g., a blood test), you might have found an answer to the high cost of health care and the shortage of physicians in some areas. Rather than spend so much time and money educating physicians (medical school, internships, residencies, fellowships, CME training, etc.), we could get by just fine with robots to analyze a blood sample and dispense medication.

        I believe we expect more from our physicians. Physicians need to be able to observe their patients and analyze how they describe their symptoms. Physicians need to know how to analyze what they see, hear, smell and touch when they examine their patients.

        Not all “positive” results are really positive and not all “negative” results are negative. Lab tests should not be ignored, nor should they be relied upon exclusively.

        There are too many illnesses for all physicians to know all there is to know about each one. The good physicians know what they know and know what they do not know. Unfortunately, the incidence of Lyme Disease and other tick-borne illnesses is increasing and more and more physicians are seeing patients who just might have one (or more) of these diseases. The good physicians take advantage of opportunities to prepare themselves for these patients by learning. That requires an open mind. It really is possible the IDSA does not have all the answers and the ILADS might just have something valuable to assist physicians to care for their patients.

        • But you’re not talking about doctors keeping an open mind. You’re talking about doctors diagnosing a very specific bacterial infection – and a treatment that requires years of invasive pharmaceutical intervention – despite there being no evidence through testing that the bacteria exists in their patients.

          If a patient complained of foot pain while walking, a doctor might suspect a fracture in one of the bones. But if x-rays showed no such fracture, would one want to be treated for a broken bone, or would one prefer their healthcare giver move on to treat the next possible likely suspect?

          I’m seriously not understanding the argument that antibiotics for a very specific bacteria should be administered over years to combat a bacteria that is demonstrated to not be in the body. Which is not to say that people with the symptoms that are associated with CLE should not have those symptoms taken seriously, and fully explored. I’m just not getting the whole “prescribing years of antibiotics for a bacteria that isn’t detected is the obvious course of treatment, and all else is a government/ corporate conspiracy” thang. It seems counter intuitive to what a conspiracy theory shood theorize.

          • All the creative spellcheck corrections that are forced upon my comments, and SP was fine with “shood?”

  28. So I’ve reached that point when I am Past All Caring, and am officially Checking Out of the comment thread. I will tip my hat to Paul for providing a few citations in one of his many, many comments, though I don’t think they add up to what the PDF he links to says they do. In any case, I remain deeply skeptical both about the veracity of the chronic Lyme diagnosis and the potential for Internet comment threads to provide substantive conversation on the matter. Carry on, all of you who desire to do so, but I think there is little to be gained by my continuing to respond.

  29. If you didn’t already have the best sub-blog on the League (you do), the comment threads around here would shove you right over the top. This was glorious.

  30. As someone on long-term antibiotics for a tick borne disease (and getting better by the way!), I just had to put my two cents worth in on this “debate”. I, too, don’t agree with “Chronic Lyme”. I feel that the use of this description is inaccurate and has resulted in way too much discourse which takes away from the real issue! Everyone seems to agree that Lyme disease exists and if you find the tick on you and/or have the bull’s eye rash and get to a Doctor that knows what that means, a short course of antibiotics is all you need. Where the problems start are with people such as myself that never saw a tick or a bull’s eye rash and had a long list of seemingly unconnected symptoms over a period of years that many specialists could not figure out. For awhile I did think that perhaps it was all in my mind but then I was fortunate (weird to say this but unfortunately true) to get two symptoms that other people saw. One was very poor balance/depth perception where I fell down stairs, tripped a lot, could not walk a straight line, etc. The other affected my speech in that I would be having a perfectly fine conversation and would then slur or mix up my words or just spout gibberish. My husband finally went with me to my GP and they had a great discussion about me while I was present! I was sent for a Lyme test. Came back negative. Then, through, considerable research, I found a Doctor that has taken an interest in tick borne diseases (on the side of a regular practice) and was clinically diagnosed. After a little over a year of various antibiotics (he would see me on a regular basis and we would go over what symptoms have decreased, been alleviated, stayed the same, etc., and he would alter the treatment), I am almost back to 100%. Of course, I also altered my diet, added various supplements, vitamins, etc. It does worry me when I read or hear about people that are paying thousands and thousands of dollars, out of pocket, for treatment. The antibiotics I took were not cheap but, fortunately, were covered under a health plan. I do believe there are Doctors out there unfortunately taking advantage of people. However, there are others, like mine, that do not charge extra for appointments (covered under Canada’s Health Care Program) and is not making a huge amount of money off of patients. Chronic Lyme is a misnomer – in my opinion. People are still sick after a short course of antibiotics either because they didn’t get the disease in time and it had already started to affect various systems of the body or they had co-infections as well as, or instead of, Lyme. Each co-infection requires a different antibiotic to get rid of it. If you are only treated for Lyme, you will never get rid of the co-infection(s). One thing about people sitting home ill, they tend to spend a lot of time on the computer and read a lot of information and try to make themselves as informed as possible. I personally have two facebook pages on Lyme Disease and Vector Borne Diseases and one Scoop.it page on Lyme Disease & Other Tick Borne Diseases. I try to include as much information as possible on both sides of the spectrum so that people can make informed decisions on what’s best for them. Hopefully all this hoopla about Romney in the U.S. will at least start some useable discourse rather than continue as attacks. As they say, any press is good press, but attacking one another doesn’t solve anything!

  31. Perhaps there was some misunderstanding about my earlier post, given the response. I did have an Igenex blood test and it was positive in some areas, negative in another (by CDC standards). Plus my CD 57 was down in the basement somewhere which tipped the scales on my diagnosis. It is unfortunate that some doctors make a lot of money off of us and don’t take insurance (have you submit it yourself) or medicare, but part of that is that they are avoiding harassment from those who think they are not following the standards of care (which pretty much means no care if not testing positive) and insurance companies won’t cover their treatments in many cases. The blood tests are inaccurate, especially in cases, like my own, where people have had it for years and the bacteria has dug into tissues, bones, organs and is only in small numbers in the blood, because that is where the immune system can find them. Plus they live often in biofilms that are impenetrable by the immune system (and most likely the blood tests). Therefore doctors are often forced to diagnose on a clinical basis, which means on symptoms and results of treatment.

  32. Russell,
    could you please tell me which particular passages of which particular medical journal articles have convinced you that chronic lyme disease does not exist? Which articles have made you sure that all the necessary science to answer this question has been done and is correct?
    I’m curious what particular evidence you would need to see to reconsider your strong position.
    kind regards,

  33. I feel sorry for anyone you happen to treat for lyme that does not respond to treatment. I tested positive for lyme, was given 3- 3 weeks rounds of Doxy and got worse. Another doctor tried amoxy for 10 days. no change, neurological symptoms got worse. It has been over a year now. I can not drive, I am in severe pain, all lyme symptoms I had before I was positively diagnosed and many more. I have been tested again, more thoroughly, I tested positive and IGM current for aniplasmosis, Lyme, and Babesiosis. But, you and the CDC I am sure are right. My blood work means nothing. I had the miracle CDC suggested cure… Now I am just crazy. My blood tests are crazy too I suppose. Regular Medical doctors are NOT taught enough about Lyme or confections. But your egos are way to big to admit that. Shame one all of you. I am willing to donate blood…. would you like me to donate some of my blood to you or your family? My positive IGM results mean nothing and I was treated for lyme…so you are welcome to it.

  34. I was diagnosed with CLD in 2006 at the age of 12 and being young it was much easier to treat. I do not recall ever having a rash but I did have many of the other symptoms of CLD and from lab testing they found Bb. At first i was treated with antibiodics alone for about 3 years which did help some. Then my doctor had me do HBO treatments in conjunction with the antibiodics for 7 weeks at a time which helped my symptoms tremendously. I was deemed “clear” or at least to where my body could fight it on its own but still go do labs to keep a check on it. All I can say is that I feel 100 times better than before treatment, so my doctor must have done something right. If you dont believe, just go get some blood trasfused from a CLD patient and see what happens.

  35. Chronic Lyme Disease or Chronicity in Lyme Infection is
    reasonable due to :
    1.Intracelluar Residence of the Borrelia burgdorferi Spirochete as established by the peer reviewed
    lliterature authored by IDSA and ILADS neutral Acadmic authors ( see Scholar Google and PubMed dataases)
    2. Recovery of Borrelia burgdorferi fromthe Blood of patients with symptoms of Chronic Lyme
    and after treatment of such patients with Chronic Antibiotic Therapy – far in excess of the
    limits of Antbiotic Treatment Dictated bythe IDSA guidelines>
    3. Objections of the politically Neutral German Borreliosis Society to the restrictive IDSA
    guidelines. [See Lyme Nert Europe Forum Discussion for particulars and for full text quot-
    tions of the German Borreliosis Society Guidelines – White Paper Document submitted
    by the German Boreliosis Society to the IDSA in Protest and Opposition to the IDSA guidleines
    See discussions : http://www.Lyme net Europe forum.com – freely available to all on the internet
    as an open access forum]
    4. The In press article authored by the German Borreliosis Society documenting 150 cases
    of Chronic Lyme Borreliosis by physician members of the German Borreliosis Society.
    [see Lyme Net europe Forum : for details]

    5. The In press manuscript on Biofilms of Borrelia burgdorferi published on the PLOS ONE
    website. Biofilms by definition, form in the circumstances of CHRONIC INFECTION RESISTANT TO ANTIBIOTICS.

    In Sum: the preponderance of evidence for Chronic Lyme Borreliosis in the Human host – which is resistant to long term antibiotic therapy;;;
    is present in the peer reviewed scientific literature.

    To Vigorously affirm, under the Aegis of the IDSA, that Chronic Lyme Disease is a
    fabrication, all of these CHESS GAMBITS are meaningless in the real world.

    Chronic Lyme Borreliosis , resistant to long term antibiotic therapy, is a REALITY
    as documented by the bullet points Above, Dr Edward McSweegan. Read the manuscripts,
    reveal your true identity to the readership, Stepout from the “man behind he curtain”
    and discuss the FACTS, not your Political Point of View,

    Respectfully submitted,
    Alan B.MacDonald, MD, FCAP, FASCP

    • Dude, if you think I’m going to search for your proof for you, you’re bananas.

      I love that you think “see Google scholar” is some kind of citation. You’re a marvel of forensics, and a credit to your cause.

  36. Dear Doctor,

    Google Scholar is fully equivalent to PubMed,which as you ,who regularly Fact Check
    is a Service of the National Library of Medicine. If Google Scholar has any citations
    which are not also found inthe National Library of Medicine orthe Print version of Index Medicus, please , as Kennedy said …” Let the Word Go Forth”.
    Yours is a Forum where your actual Identity is intentionally concealed from your readership.
    Is there a reason for your Secrecy? Are you really an Otolaryngologist? No other medical specialist Decorates his Avatar with the now obsolete headgear that you festoon.
    Step out from behind the curtain and Tell us what your Academic credentials really are
    and tell us your true name so that we may survey your education , practice experience, peer reviewed manuscripts, and your malpractice history.
    With much hope for unmasking your nom de plume,
    Alan B.MacDonald MD
    Columbia University College of Physicians and Surgeons
    MD 1974

    • You’ve got to be kidding me. This is a joke, right? Rose, did you put a hidden camera in my home so you could catch my reaction to this lunacy? Burt? Tod? No?

      Okey-dokey, Alan. Let’s just review a few points:

      1) I know what Google Scholar is. I know what Pubmed is. They are both wonderful ways of finding information, which you can then use as citations. But they don’t count as citations unto themselves. I can’t write a paper and, in references, simply write “visit the National Library of Medicine.” If you have a case to make, then you provide the evidence. I’m not going to do your work for you.

      Why don’t I give you an example? Click here. Those are what references look like. Go get some.

      2) I am not an otorhinolaryngologist. I’m a pediatrician. Says so up in my wee little bio, which you can find at the top of this page.

      3) You do realize that one need not use one’s real picture for a Gravatar? As she has said upthread, Rose does not claim to be able to read the future. Tod is not really a tree. And that’s not really a picture of me, which is something pretty much everyone but a handful of nincompoops has been able to discern merely by looking at it.

      4) As Darwy has already noted (and I’m guessing she’s not really a pink ribbon), you write in a fascinatingly incoherent manner. (Love your use of “festoon,” though.) Not saying you’re not a doctor, but if you are then you’re a doctor whose English composition skills need a tune-up.

      5) I find your list of demands very droll. Here’s my answer — “no.” First off, you’re not the credentials specialist at the hospitals where I’m on staff. (Hint: they’re good ones.) You’re not entitled to demand any information about myself that I’m not inclined to share. And I’m not inclined to share any of that with you.

      Or maybe that’s mean? Here, I’ll give you one thing you asked for, in the spirit of good faith. My malpractice history? Nil.

      6) My identity has no bearing on my argument. What I’ve said does not gain greater validity if I’ve published one peer-reviewed article or ten or twenty. Either it stands as an argument or it doesn’t.

      If you really are an advisor for foundations out there and this is the quality of thought that informs your advice, it says more than I ever could about the value of what they put out.

    • Thank you for pointing out that Dr. MacDonald has the additional qualification of a demonstrated breadth and depth of knowledge on this issue by his professional association with some of the most respected scientific researchers and medical practitioners committed to preventing, diagnosing and treating tick-borne diseases. As for your comment on Dr. MacDonald’s literary abilities, it appears your concern is more with form than substance.

      Having said that, I must ask (rhetorically), weren’t we discussing a medical issue?

      • Why Jeff, you’re very welcome.

        Russell was commenting on Dr. Alan’s sources regarding his hypothesis of Chronic Lyme Infection. This is his right, as saying, “See google scholar” is poor form for fulfilling the burden of proof for making his claims.

        Dr. Alan responds with allegations that Russell is a fraud or misrepresenting his credentials.

        I point out that Dr. Alan is associated with a Lyme Disease group.

        You chime to the effect of saying, “Well he’s sure convinced me that he’s legit!”

        Unfortunately, had you looked closer at the link, you’d have noticed it doesn’t go any further than that homepage. No research, no awards, no sources…nothing. It’s rather telling that, on the basis of a single link, you immediately assume his qualifications are genuine.

        A search in PubMed for Alan B MacDonald gives 6 hits in ‘Medical Hypotheses’ – which is (at best) a ‘crank journal’ where people can do the equivalent of fling poo against the wall and write about what might stick.

        Your lack of discernment disappoints.

    • Personally, I have a difficult time believing that someone who writes so poorly as he can, in fact, be a doctor.

      English composition is not part of the standard cirricula of most medical schools. Of course, it ought to be — writing reports, or at least dictating them, is a bigger part of what doctors actually do than what is portrayed on TV. As any doctor whose decisions have been questioned after the fact can surely attest: if it isn’t documented, then it didn’t happen.

      As for Alan B.MacDonald MD, what he lacks in eloquence he certainly makes up for in tenacity.

      • Actually, I will also say that I am familiar with a writer who is justly famous for his verbal ability, wit, and intelligence. His grammar and spelling, however, are similar to Dr. MacDonald’s. Everything he writes must be thoroughly vetted by assistants. He is an excellent writer, but horrible grammarian and speller.

        My husband is also a philosopher, who has met with a good amount of success given his level in his field. Really smart guy. His grammar is fine, but his spelling is truly awful. Your for you’re, there for their, and that’s the least of it.

      • Although I have to say, it’s a little weird that on the Lyme website he lists as his employer an organization that had to part ways with him over a decade ago.


        I know enough about such actions to know that your employer or your insurer settling does not prove wrong doing, so without knowing any of the particulars I certainly have no criticism regarding whatever actions led to the lawsuit.

        But still listing St. Elizabeth’s as your employer is… well, odd.

  37. Dear Dr No,

    Thanks for the credentials summation.
    I now have a better view of the depth of your knowledge of the
    peer reviewed literature regarding the Existence or the NonExistence
    of Chronic Lyme disease.
    The Entity of “chronic” does not bundle with the word “Chronic”
    any testimonials for or against the use of various therapies.
    It merely asserts that Bugs remain in th human corpus for prolonged
    periods of time, and may be continuously active, or alternately may
    be quiescent but capable of recrudescence, and re–activation.
    HIV is a chronic infection which is treated with lifelong antiretrovirals–
    Tuberculosis is treated with at least one year of antituberculosis
    Is the Visual Cliff —long term anti -infective therapy — frightening to you?

    We take an oath to above all do no harm. There is the harm which might come
    from physician intervention – such as death from prescription medication precipitated
    There is death from Cardiac failure, from Renal Failure, from Pulmonary failure…
    and then there is Death from Physician Failure.
    Think about it, noble healer of the sick and infirmed.

    With hopes for some enlightenment,

    PS: for a more complete bibliography,do a literature search with Author:
    MacDonald, A.B. which will take you back to 1986

    • Is the Visual Cliff —long term anti -infective therapy — frightening to you?

      Not at all, provided that long-term therapy has been shown to provide some clinical benefit. Since it has not in the case of chronic Lyme, I oppose its use.

      There is death from Cardiac failure, from Renal Failure, from Pulmonary failure…
      and then there is Death from Physician Failure.

      I wish there were a way I could insert an eye-roll into text. What overheated stupidity.

      PS: for a more complete bibliography,do a literature search with Author:
      MacDonald, A.B. which will take you back to 1986

      Great. Provide some links to your lengthy list of citations, and we’ll evaluate the evidence you present.

      Until then, you are providing nothing but the same tired, unsupported nonsense that has already been shared in ample supply upthread. Give evidence or don’t, but if you don’t then there is nothing left to say in response to you. (Also, please learn to hit “reply” if you’re replying to something.)

      And now I have better things to do than reply to any more of your claptrap.

  38. German Borreliosis Society:

    Objections to IDSA guidelines:

    Excerpted from communication to IDSA pages 3-6


    Our objections relate to diagnosis and treatment of Lyme disease (LD), chronic

    Lyme borreliosis (LB) and the so-called “post-Lyme syndrome” (PLS).

    1. Objections to the IDSA guidelines for diagnosis of LD and chronic LB:

    – Seronegativity is frequent in LD and does not rule out a chronic persistent

    Borrelia burgdorferi (Bb) infection (1-18).

    – The differential diagnosis between multiple sclerosis and neuroborreliosis based on CSF and serum analysis is not possible in at least 25% of cases (9-11, 21).

    – Peripheral neuropathy is not rare but occurs in over 20% of LD cases (22-


    – So-called two-tier testing is not suitable to diagnose LB, particularly in the late phase, for the following reasons:

    o The test methods available on the market are not standardized with respect to their diagnostic value.

    o The sensitivity of ELISA and IFA screening tests varies from 50% to


    o The sensitivity of the Lyme Western blot is around 10% higher than that of the screening test.

    o This difference in sensitivity means that there is a risk that the screening test will be negative whereas the Western blot shows positive, and the diagnosis of LD will be missed.

    o Neither the screening test nor the Western blot can rule out infection with Bb, i.e., there is a problem of seronegativity (based on the screening test and Western blot) even though the illness persists and has been confirmed by identification of the pathogenic agent (1-18).

    2. Objections to the IDSA guidelines for treatment of LD and chronic LB:

    – In Europe, LD is often associated with generalized dissemination throughout the entire body, including involvement of the central nervous system (CNS). Treatment should therefore be carried out with antibiotics that penetrate the CNS, irrespective of the various manifestations of the illness (arthritis, neuroborreliosis, neuropathy, acrodermatitis, carditis, encephalopathy).

    – The oral antibiotics recommended by IDSA, namely low-dose doxycycline, amoxicillin and cefuroxime, do not penetrate the CNS; in contrast, minocycline, gemifloxacin and intravenous third-generation cephalosporins yield high concentrations in CSF above the minimal inhibitory concentration (MIC) for Bb (19).

    – Contrary to the negative opinion of IDSA, the following antibiotics and methods of treatment have proven to be advantageous: carbapenems, ketolides and gemifloxacin (19); pulsed-dosing (20).

    – The antibiotic treatment of EM displays a therapeutic failure rate of at least

    10% (15, 41, 45, 47, 67-74).

    – Bb could still be identified in the skin even after multiple antibiotic treatments with ceftriaxone, doxycycline and cefotaxime (47-49).

    – The resistance of Bb to numerous antibiotics has been proven (61).

    3. Objections to the proposed IDSA definition of “post-Lyme syndrome”:

    – Antibiotic treatment according to the IDSA guidelines does not guarantee elimination of Bb.

    – Subjective complaints may reflect ongoing infection with Bb rather than a different illness (PLS).

    – The disease situation described by Steere et al (26) as “minor signs and symptoms” and by Bujak (27) as “post-Lyme syndrome” represents serious discomfort for affected patients that is comparable to decompensated cardiac insufficiency, degenerative joint diseases, pronounced diabetes mellitus or a condition after a myocardial infarction according to Klempner et al (2).

    – The following facts suggest the existence of chronic LB due to persistent Bb infection:

    o Persistent symptoms of LB with Bb identification despite intensive antibiotic treatment (28-46).

    o Members of the Deutsche Borreliose Gesellschaft have documented

    150 such cases (ISBN 978-3-640-19378-3, submitted for publication).

    o There is an extensive body of literature on the existence of chronic

    LB (45, 50-55).

    o Bb could be cultured in every stage of chronic LB (28-44), even after intensive antibiotic treatment (20, 41, 56-60).

    o Numerous publications deal with chronic LB and the problems with its antibiotic treatment (20, 48-49, 62-66).

    o There is a high therapeutic failure rate for the antibiotic treatment of

    LB in its late phase (52, 54-56, 65, 75-77).

    – The so-called (according to the IDSA guidelines) adequate antibiotic therapy is subject to these restrictions:

    o Since Bb can possibly resist various antibiotics (including those recommended by the IDSA guidelines) switching antibiotics may be indicated (61).

    o While Bb may be resistant to erythromycin, related antibiotics appear to be suitable for treatment of LB (26, 83-85).

    o Duration of treatment depends on the organic manifestations, severity and course of disease, as outlined in numerous references (2, 20, 25-26, 41, 45-47, 49, 51, 53-54, 56, 60-66, 71-73, 75, 86-94).

  39. Dear Dr No,
    Many thanks for you kind words of support.
    Apologies for my poor command of the English language.
    I suppose that I use a local dialect, derived from my years
    at Columbia University in he City of New York.
    Best to you,


  40. Strain Differences between Borrelia burgdorferi strains bearing the subset identifier ND40.


    The Boiled down essence of this important discussion is that Lyme Disease strain ND40
    which has long been used by a variety of researchers to study animal models of
    the responses in laboratory produced Infections–
    Is not merely a single PURE unchangeable microbe
    but rather ND40 is a Closely related group of sub members of ND40
    which produce Widely Different Protein Profiles
    which in turn produce different pathologic effects in the laboratory –
    Different patterns of Virulence and different patterns of tissue injury.

    Executive summary: Many Sub Strains of the Lyme Disease spirochete are documented.
    [currently the count of Genotypes of Bb ss is FIFTY TWO]

    Your personal Lyme spirochete,if you are infected is likely to differ
    in Significant ways in its biological behaviour [uk spelling]
    from the personal Lyme disease spirochete of another Lyme disease patient in the USA.
    We are not discussing the intrinsic, long known, differences between Lyme disease
    spirochetes cases acquired within ( vectored from) the USA
    versus those cases vectored from European Ticks.

    There is a Molecular basis for observed differences in the clinical Courses (plural)
    of various patients with Lyme disease. Not all patients with Lyme disease enter
    a Chronic phase.
    Some patients with Lyme disease progress to Chronicity of disease, symptomatology,
    and microbial persistence in their bodies. Dr Stephen Barthold has lectured widely
    about the mechanisms of Persistence of Borrelia burgdorferi after a “complete” course of
    IDSA, CDC sanctioned antimicrobial therapy. Dr Barthold calls attention to the VBNC
    category of Borrelia burgdorferi organisms ( Viable But Non Cultivatibles)

    Lyme disease is not simple at the molecular Level.
    Lyme disease is not simple at the clinical Level.

    Just so that you know…

  41. Which reminds me of the Margaret Mead quote: Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.

    • Did you even read the paper before you linked to it? If you did, you are either an idiot or a liar.

      It does little to bolster your case. (Neither, for that matter, does your link supra about the different strains of borrelia, but I thought perhaps if I didn’t reply to you any longer you would go away. No such luck, it seems.) It has nothing to do with so-called “chronic Lyme.”

      The patients in the study:

      1) Had serological evidence of Lyme

      A comparison of probable late Lyme and confirmed late Lyme patients in our sample show some similarities. Patients in both groups have significant immunoblot reactivity on IgG immunoblot blot analysis, exceeding the highly specific CDC criteria 5 band cut-off for positivity. (emphasis mine)

      2) Had not been previously-treated with appropriate antibiotics

      3) Responded to appropriate, IDSA-approved treatment, though some had symptoms of post-treatment Lyme disease syndrome (which the authors go to great pains to discuss in a measured way, and to differentiate from “chronic Lyme.”)

      4) Met criteria for the diagnosis of Lyme from the CDC

      All of this is in contrast to patients who get treated for “chronic Lyme” on the basis of no serological evidence whatsoever, and are often put on lengthy and unhelpful courses of antibiotics (including some that the authors of this study label “inappropriate”) with no improvement in their symptoms.

      What little patience I have with you has come found its end. Your citations either contain lengthy lists of reference numbers without links to provide verification, or simply say something other than what you represent them to say. You remind me of nobody so much as anti-vaccine zealots, who gesture toward scientific studies that do not say what those brandishing them claim. You’re crossing the line into troll territory, and I’m going to start deleting your comments if this persists.

      • It sounds like one of the typical anti-vax maneuvers – a gish gallop of citations which *seem* plausible, until you actually examine them and find that they do nothing to support the poster’s claims.

  42. Dear Dr. No.

    From Aucott’s article:

    “In our small case series 4/9 (445) of patient had relapse of symptoms after initial antibiotic therapy, suggesting that a subset of patient with probable late Lyme Disease will go on to develop PTLDS. Future studies are needed to ass effective treatment modalities in a controlled manner”

    MacDonald’s comment: “PTLDS” is an IDSA CODE WORD for CHRONIC LYME DISEASE . A Relapse rate of 44%after antibiotic therapy under direction of Johns Hopkins Medical School Faculty physicians was noted.
    The IDSA would turn these patients away because
    The Patient’s DO NOT FAIL ( as in a Pass/Fail grading system)
    Rather the THERAPY FAILS TO HEAL . ( As in a Pass/Fail grading system)

    Patient failed treatment — words come in to play in Cancer chemotherapy —
    The patient “Failed”??? ——— Nooooo——– The THERAPY FAILED.

    Alan B.MacDonald MD

    • MacDonald’s comment: “PTLDS” is an IDSA CODE WORD for CHRONIC LYME DISEASE

      Yeah, well. That’s what you say. No doubt, you would then say that it warrants further antibiotic therapy, despite there being no evidence to support that. Nor does the study indicate that the relapse of symptoms was related to persistent infection.

      You don’t get to change what the study says in order to suit your purposes. The paper calls it PTLDS, and you don’t get to decide that their term is really your term, and what they mean is really what you mean.

      You’re done here. I’m tired of your comments and I’m tired of you. Get your own blog, clog up someone else’s comment thread, hire a plane to carry a banner over IDSA headquarters. I don’t care. But you’ve had plenty of opportunity to state your case here, and I’m giving you no more space. Any further comments will be deleted.

  43. I understand, it is your forum, and you rule.

    Alexis de Toqueville said [ among many other treasured words of wisdom to our young Country]
    ” When iI refuse to obey an unjust law, I do not contest the right
    of the Majority to command, but I simply appeal from the sovereingnty of the people
    to the sovereignty of mankind”

    May I send you a peace offering from the Stonewall Kitchen, just down the road
    from our residence?
    Or Perhaps the full Proust “Memories of Things Past”?

    Primum no nocere!


  44. http://www.treeandlawncare.com/blog/more-proof-chronic-lyme-disease-exists

    That might be interesting to you…or not. I see quite a few exaggerations in your writing. I am sure you are aware of ILADS? It’s not just a bunch of pateints against everyone else.

    They are not saying they want to protect doctors who are quacks. They protect patients so the insurance companies can’t take away their doctor because the insurance company is having to pay out “too much” money to treat them. If you did even a little research you would know this which makes me believe you dont want to know the truth.

    You are aware even Democrats are on-board with Lyme legislation?

    Comments may mean little to you but (more) incorrect information about Lyme on the internet is extremely damaging to Lyme patients which include children. It is irrespoonsible to do this without all the facts.

    Even if you are not interested in changing your mind, you might want to save face later when more people know the facts and then you just look like a big meanie for picking on people with a disease they got by doing no more than going outside.


  45. I have a 2 hour recorded interview on the
    Webiste “In short Order” which touches on many of the newer
    issues in borreliosis worldwide , the new emergence of Miyamotoi
    borreliosis in the Northeastern USA, and the multiplicities Erythema
    Migrans Rashes [ no merely a “bull’s eye” for the 80-90% of patients who
    acquire a rash after a bite from an infected vector tick.{ Up to 50%
    of Lyme seropositive patients never recall ever experiencing an
    Erythem migrans rash} . Freely available on the “In Short Order”
    Alan MacDonald MD
    June 2,3013

    [Ed: Alan, this thread is old and I’m not interested in any further commentary, particularly from you, shilling for yourself. Find somewhere else to promote yourself, please. I have taken the liberty of disabling your link, as well. — RS.]

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