December 9th, 2010

Chronic Lyme Tough to Diagnose, Tough to Treat

Over at the Chicago Tribune, there is this superb review of the Chronic Lyme disease issue.

Lyme disease is real. The bacterial infection, chiefly transmitted by deer ticks, can cause rashes, swollen joints and inflamed nerves, and usually is curable with a round of antibiotics.

But doctors around the country are telling patients with common medical problems such as back pain, poor concentration and fatigue that their ailments stem from a chronic form of Lyme disease that can evade standard treatment and wreak havoc for years. To fight what they believe is a persistent infection, the doctors often order months or years of intravenous antibiotics, which can cost tens of thousands of dollars.

Strong evidence isn’t on their side.  But in a golden age of dubious medicine, that doesn’t matter.

My advice:  read the full article, as I cannot recall a better summary in the lay press of this highly-contentious topic.

Oh, and for the record, in my experience there are few encounters more challenging in ID practice than addressing the diagnosis of “chronic Lyme.”

Many patients given the diagnosis are (legitimately) so desperate to find an explanation for their suffering — and to do something rather than nothing — that they latch onto this unproven diagnosis and are willing to receive potentially harmful therapy rather than continue to live in misery without taking action.

And when, as an ID doctor, you review all the history and data and find no evidence of Lyme, you make a person who feels sick feel even worse — because usually there is no alternative infectious explanation for their various complaints.

It’s an unbelievably difficult situation.  In many ways, chronic Lyme is even more difficult to treat than HIV — which was my original (jokey) title of this post, until someone told me it might be offensive.  But you get my point.

So shared experiences, other thoughts, potential strategies for managing “chronic Lyme” — from my ID colleagues, from other providers, from patients — would be much appreciated.

One Response to “Chronic Lyme Tough to Diagnose, Tough to Treat”

  1. Joanne Drayson says:

    How do you account for the copious numbers of research papers where seronegativity and persistent infection following antibiotic treatment for lyme Disease have been found?
    Some of that research done by the authors of the IDSA contested guidelines.
    How do you account for the science presented to the Institute of Medicine Workshop on the state of the science still available on their website, which shows quite clearly how complex all these known tick borne illnesses are to test for and diagnose and how all have the capacity for chronic illness.

    Ben Luft’s recent research on the sequencing of the Lyme Disease genome is very enlightening, he shows some strains to be mild and easy to deal with whilst others are more aggressive and harder to treat.
    Perhaps in the end all will be right for some patients ie some do get better with IDSA approach which is clearly already evident, whilst others improve with ILADS approach again evident by the numbers who recover their health and their lives myself included.

    Then there are those who don’t appear to get better with either treatment protocals.

    Instead of this constant pontificating and denying something whilst the science is still eviloving doctors and researchers need to work together with patients to see what helps them.

    I was fortunate that here in the UK the Lyme Wars are not yet quite so apparent.

    My GP suspected Lyme Disease because of my significant response to amoxycillin after suffering from chronic arthritis and muscle weakness 4 years. At the stage of suspecting Lyme Disease other patients had presented in the early stages from my locality with positive serology.

    I did not even know you could get Lyme Disease in the UK so carefully is the lid kept on this emerging disease.

    I had attended surgery at times of tickbites, Bulls eye rashes summer flu’ and migrating arthralgias all documented on their computer but not treated.

    The most important thing though GP could see my improvements on antibiotics and deterioration when they stopped, much more significant than whilst on steroids for 20 months for wrong diagnosis.

    I was Retired early from the Civil Service on the grounds of ill health but after many months of antibiotics have regained my health and my life I have no pain no disability and can even cycle again.

    Yes I am probably your worst nightmare for an ID consultant but thank goodness I was never referred to one and the 3 consultant Rheumatologists I was referred to hadn’t a clue. Thankfully my GP treated me on antibiotics despite the ME/CFS diagnosis from the last one I saw.

    I don’t care what the illnesse was called I have recovered and after all that is the important thing.

    So instead of parrotting such clearly biased articles in the press do your own through research.

HIV Information: Author Paul Sax, M.D.

Paul E. Sax, MD

Contributing Editor

NEJM Journal Watch
Infectious Diseases

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