The Lyme disease controversy

Some are saying that Lyme disease is overdiagnosed and overtreated. Also becoming more popular are the so-called Lyme gurus, who give extended courses of antibiotics – which may not be evidence-based:

But what’s even more devastating, says the chief of infectious disease at Northeast Health Systems, is the tendency for people to seek out “Lyme gurus” -”” cash-only, out-of-state doctors who make their living prescribing unneeded antibiotics.

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  • Anonymous

    The side that views Lyme as overdiagnosed and overtreated claims “the evidence” doesn’t support extended treatment courses. The truth is, there is little hard evidence either way. Only 3 NIH-funded clinical trials of antibiotic therapy for chronic Lyme disease have been done; one showed no benefit (a study with major flaws), another showed a significant benefit in terms of fatigue, and the third found a significant benefit in both physical and cognitive symptoms – correlating with brain SPECT scan changes – though this study hasn’t been published yet. One wonders why these significant benefits haven’t been publicized at all by the CDC or NIH. See Wikipedia’s summary of these studies for more information.

    Before disparaging “gurus” who treat chronic Lyme with extended courses of antibiotics, perhaps you should take a serious look at their evidence-based critique of the Klempner study.

    The politics are such that doctors need to read the medical literature on Lyme for themselves, instead of uncritically accepting summaries from the CDC and IDSA. A good outline of the controversy (with references) can be found here (Wikipedia-Lyme controversy).

    There is a simple reason why many Lyme specialists don’t take insurance, and it’s not greed. It has more to do with insurance companies which fight long-term treatment tooth-and-nail, and may file complaints against doctors with state boards (for daring to go beyond the restrictive guidelines of the Infectious Diseases Society of America) in the interest of not having to pay for months or years of expensive treatment.

    For me personally, long-term antibiotic treatment has restored a great deal of functioning after many years of disability and misdiagnosis. More research is certainly needed, but to deny others this treatment given the present state of knowledge is, in my opinion, a crime.

  • #1 Dinosaur

    One of the most insulting things a new patient said to me when telling me about her Lyme diagnosis was that she had been seeing an “LLMD.” She asked if I knew what that was, and since I had no problem admitting that I didn’t, I said no. “Lyme Literate MD” was her answer. Now, I have a pretty thick skin when it comes to patients, but this was above and beyond, implying that I was “illiterate” for not believing all the Lyme hype.

    Oh, and Anon: Wikipedia is hardly a definitive resource, especially for controversial topics. Neither would I expect balanced treatment from an “evidence based critique” from the “International Lyme and Associated Disease Society”.

  • Anonymous

    #1 dinosaur: Of course Wikipedia is not a definitive resource, but the Lyme article links to over 100 medical articles on Lyme (hence its usefulness); it’s also the only place on the Internet that summarizes all three of the NIH-funded clinical studies of long-term antibiotics for Lyme. I would hope that’s something doctors might like to see.

    I’m sure it’s frustrating to have patients wrongly assume they know more than you. But I’m also disappointed that your expectations (as in not expecting “balanced treatment” from the ILADS critique) are preventing you from actually reading the thing and deciding on more scientific grounds. A perfect illustration of the problem I wrote about above – politics trumping scientific inquiry.

    Where does that leave patients? Whom do we trust, when our doctors won’t engage the ideas and research of their colleagues, but rather choose to smear them with insults as is so often the case with Lyme?

    I, for one, would be very interested in your opinion of what’s wrong with the ILADS paper. Eg. is it “hype” to point out that the Klempner study used a dose of doxycycline too low to adequately penetrate the CNS? (This being the lone study which found no benefit from antibiotic therapy for chronic Lyme.) I find this rarely reported fact kind of curious myself.

    Don’t like ILADS? Don’t join them. But until doctors start engaging their perspective directly instead of dismissing it in one fell swoop as “hype,” you will continue to face patients who have more faith in so-called “LLMDs”.

  • Anonymous

    Lyme is an insidious disease that begs for intensive research. It is not easy to catch. It is not easy to cure. (If this were the case, my Lyme would have been discovered immediately, not three years later, and I should be fine after a month of abx. That is not the case either, as I have been on abx for two years and I’m still seeing improvements. I have quite a way to go.) This is what the IDSA and the insurance companies would like the general public to believe, but it is a carefully manufactured pack of lies intended the benefit the insurance companies and shareholders of the Lyme vaccine.

    Maybe long-term antibiotics are not the answer, but right now, they are all we have.

    Patients with Lyme are sick. We need help. We need treatment, compassion from family and friends, and support from medical professionals. If you are insulted to be called “Lyme illiterate”, then get your fine self to one of the many Lyme disease conferences for doctors to learn about the disease. Study both sides of the controversy, and then decide how you feel. I am willing to stake a lot of money that you will not feel the same way as you did before.

    The truth is out there. It’s going to take some time, but I am confident that the corruption will be exposed and the perpetrators of these crimes will be brought to justice.

  • Anonymous

    I would also like to add that there is absolutely nothing wrong with seeing a Lyme disease specialist if you do indeed have Lyme or one of the many tick-borne disorders. If one had heart troubles, would that person consult with a podiatrist? Of course not. Unfortunately, there are not many Lyme literate doctors out there, and some of them are indeed out of state, but that is the price we are willing to pay to regain our health and, essentially, our lives.

  • lebowski

    i m not a dr and will ask a question here , in medicine is the double blinded trials only thing which is exepted as “evidence” ?
    what about the pcr experiments which proved the persistence of the borrelia in spite of antibiotic therapies , cant they be evidence of chronic lyme ?
    or people who got well after after long term abx treatment after years and years of misdiognosis by every kind of dr they see for their symptoms ? what do u explain their sitiuation , with placebo effect of abx ?

    “i m not doing anything for these patients cause there is nothing to be done ”
    this is the excuse some unfortuantly illetarete drs r using, protecting them from studying lyme disease further ..

    and as the last thing ; so called evidence based therapy of lyme cases shouldnt have depended on less than % 50 sensitive lyme tests in chronic cases .. if this is ur evidence based therapies i prefer gurus, i prefer myself , i even prefer witches , even animals be my dr instead of u ..

  • Peacesoul

    funny, I bet some Dr out there was saying this about syphilis 40 yrs ago.

    Peacesoul

  • anthropisces

    I have something that seemed like Fibromyalgia, but without the tender point sensitivity.
    It was very bad in Feb, March, April, and through much of May.

    Really odd were the dreams, the complete change in sleep pattern, the skin burning, the arthritis, the burning in my muscles, and the severe cognitive problems “am I driving on the correct side of the road?”

    I’m not an attention seeking wimp. I’ve spent my entire life (when I’m not working) in the outdoors and at sea. I don’t get nervous and start wimping out and getting a host of symptoms over it so that I can get all giddy over the attention.

    I’ve had embedded ticks that I didn’t notice for more than a week. I pulled them off without a care and I never even considered Lyme.

    So I don’t have Lyme huh? Ok, I’m game-then you fix me. Cure me instead of sending me home with a diagnosis that says I’m stressed. When I show up at your office in a few years, please don’t say “well, it looks like you’ve got Parkinsons, or ALS, or MS, or Fibromyalgia, which there are no cures for…now go home and die”

    Cure me, cure me and I’ll bash Lyme right along side you. But you can’t. All you can do is tell me I’m stressed.

  • RjonesOD

    Dinosaur you obviously do not have thick skin. Let go of the ego and admit your ignorance, its not a crime to be ignorant. The best thing you can do for the patient is agree that you do not know the disease well and will find a Dr. who does or will at least do some of your own research. Think for a moment how someone with a underlying infectious process feels when a Dr. tells them they are “Crazy”, “its stress” “its fibro” “its ADD” etc. Infect yourself with lyme, don’t treat the early stage and let it go chronic then go to 15 doctors and get to see what insults you have to endure. If you can do that then you will have the thick skin each lyme patient has to endure. Oh yes many lyme patients have neurological issues which makes their ability (skin) to handle insults reduced. And yes they have to actually pay the Dr. to get the insults. My advise is to toughen up, check your tiny ego at the door and starting doing some research and come to conclusion after.

  • ruby

    my lyme infection went undiagnosed for over a decade. more than ten years of debilitating migraines, sleep disturbances, cognitive dysfunction. it wasn’t until the burning skin and vertigo set in that i sought help from a naturopath. luckily, this man had suffered lyme as a young man so he tested all incoming patients. when my test came back positive (both igenix and cdc, thank you) you bet i found a “guru” because my primary denied the validity of the test! she told me i didn’t have lyme, i must have rheumatoid arthritis. and i was depressed. i should go back to the neurologist and keep taking the anti-psychotics he had given me, the side effects will wear off. i’ve never seen either my primary or her beloved neurologist again.

    when my highly active, strong, frighteningly intelligent 9-y-o daughter started becoming lethargic and disinterested, starting having trouble in school i got her tested. i can hear it coming, kids go through phases, they have swings. when it’s your child, you know what’s normal for them. so skip it. her test came back as what our LLMD (yeah, i said it, and he is) described as the strongest positive he had ever seen for congenital lyme. within 6 weeks of abx she was herself again. immediate turn around. i cried for joy. and envy.

    i have been on abx therapy since last october. i have had intermittent improvement, bad reactions to meds, and a second positive test. according to the cdc shouldn’t i be better by now? shouldn’t that second test have been clean? the cdc, insurance companies, and doctors who base their treatment on narrow guidelines are invested in making us all believe so. it’s money. it’s ego. the only thing for us to do is take the money out of their hands. go to your guru. don’t hand money over to a closed minded doctor. spread as much information as you can. walk around with copies of every study you can find if that’s what it takes! hand them out to people! we need to find a foot hold in this uphill battle.

  • http://barbfeick.com/healthinfo barb

    Dr. Mercola recently had a very interesting article about the Lyme spirochete family. There is a whole group of these critters and they are spread by nearly all biting insects and spiders – not just ticks. And not everyone gets the bullseye infection either. I do computerized electro dermal screening and am finding that 60% of the people in the Columbus, Ohio area screen positive for these critters.

  • ruby

    i never developed the bullseye rash. even our current statistics show that as many as 30% of infected people don’t. without that, so much for early diagnosis.

  • RjonesOD

    There is much to learn on lyme, its a shame that politics have to be involved.

    Yes lyme is not easy to diagnose and the bullsyeye rash does not always behave as we would like it to. Plus many people that work outdoors get bee stings, various bug bites and would not dream of going in for such a trivial thing. Some people only see a Dr. if they have a broken leg, not a small bump.

    There are probably many people that are infected but are sub clinical. Like herpes it may worsen during times of stress.

    Lyme is more likely under diagnosed or misdiagnosed as MS, Alzheimers, bipolar, RA etc. This not to say all of these conditions have a spirochete as the underlying cause but I would hazard to guess its a number more than one.

    I have read many anecdotal cases where people with long standing autoimmune diseases. were treated with AB and had a complete remission of symptoms.

    It will play out as time goes by.
    From what I have read I do not think it implausible for the standard of care to change. Meaning certain diseases should have a lyme test (hopefully better ones than now) done before assuming its a unknown etiology. It could save a person a life time of meds and debilitation.

  • http://lymies.ning.com johnnylight

    I can just say after 30 docs and 7 years the best move i made was seeking out a Lyme Doc she saved me from sure death, I am grateful she has the courage under all the controversy from the CDC and medical boards to treat a suffering Patient like me.

    It is NOT psychosomatic, Placebo, stress, depression or any of those lame excuses those excuses have been played out to the hilt. I was very happy person before this happened to me so i knew from the get go i had Lyme because all my symptoms matched perfectly.

    They say the proof is in the pudding and that holds true because after 18 months of combo therapy (abx) my symptoms are getting less and less my right arm doesn’t go numb anymore and the left side of my face this took many, many months before things started to improve.

    Every time i stopped the treatments in the past i got worse to the point where i could hardly walk and get out of bed. I would get so dizzy i would lay by the toilet for hours throwing up as the room kept spinning round and round. (awful experience) now those experiences are far and few between i haven’t had double vision for 18 months now and light sensitivity is so much better.

    I will always have Lyme damage from the spirochetes attacking brain, my spect scan was awful and consistent with a dementia patient still can’t spell much and concentrate on anything to long. I hope things change soon i am fighting for all the suffering Patients out there that don’t even know they have Lyme, not too many Docs are looking for it and they really don’t seem to care about it.

    Thanks for listening