Long term Lyme disease: denial of hope - The CT Mirror

Shown in this darkfield microscopy (400x mag) are the spirochetal bacteria known as Borrelia burgdorferi, the bacterium responsible for Lyme disease.

A response to the CT Viewpoints op-ed Treating ‘chronic Lyme disease:’ Is it medical fraud? by Lawrence Zemel MD and Paul G. Auwaerter MD, Dec. 13, 2019.  The viewpoints presented in this commentary are detrimental at best and, at worst, causative of the issue they purport to address.

Even starting with the title, there are huge issues.  Placing the label (chronic Lyme disease) in what should have been quotation marks, shows a dismissive attitude toward a large group of people who are suffering.  The letter presents the CDC conclusion that there are 300,000 new cases of Lyme disease each year and that up to 15% of those cases result in patients that continue to have the disease after initial routine treatment.  That is 45,000 new cases of Lyme disease that are not addressed by standard treatment.  That is one new baseball stadium full of suffering people created by this disease each year; close to half a million in a decade.  A good percentage of these sufferers have their lives destroyed by this long term affliction.

The authors discuss that “a number” of trials demonstrate that long term Lyme symptoms do not respond to retreatment at all, and then go on, in the same sentence, to contradict those findings by discussing other trials that demonstrated “limited” benefits.  They fail to mention that still other studies show substantial benefits from long term treatment.

The letter goes on to discuss “evidence-based” recommendations to limit antibiotic use in Lyme disease treatment, although there is much published evidence that this long standing reticence of the IDSA (Infectious Disease Society of America) to support the appropriate use of antibiotics against Lyme has led to under treatment in a significant percentage of cases and increased the population of those who suffer with long term Lyme symptoms.

And if the point is to address the over-use of antibiotics to avoid a looming public health crisis, the paper should have focused on the millions of pounds of antibiotics thrown into our environment by the food production industry in their treatment of livestock.  Antibiotics were developed to address bacterial attacks against suffering humans and preference should be given to the published evidence that Lyme patients can be helped by long term treatment.

This type of paper, published in a significant and respected news source, tends to make physician reticent to treat Lyme patients.  They might feel they will get painted with the broad brush of those being labeled as frauds.  The paper even goes as far as disparaging “clinical” diagnosis, which is the means of diagnosis recommended by the CDC (“Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks,” per CDC website).

Are there many cases where charlatans jump in to profiteer when there is a large group of suffering people with little hope?  Yes.  This has been the case throughout human history.  This paper exacerbates that issue in regards to Lyme.  It takes the documented legitimate hope of successful treatments, albeit for perhaps not a robust percentage of those afflicted, and tries to destroy it.

If a person has the debilitating symptoms of Lyme for a long time, following the logic presented in this paper, they should not look to the documentation of successful treatments but accept the “number” of trails that show there is no hope.  This is in line with the IDSA’s long history of discrimination against Lyme patients, going back to their previous stance, long held, that Lyme disease was non-existent in all patients that had received initial treatment.

Now that there are hundreds of thousands of long term Lyme suffers, with 45,000 more each year, they have found it impossible to continue their denial, but that previous denial now throws their judgement on this topic into question. Now they just want these suffers to accept their fate and stop looking for treatment and a path back to a full life.

If they really want to help these people, they should take their time and copious talents and put them toward studying the research papers that describe the successful treatments presented and working hard to perfect the best of them.  That would help build the hope that would take the fuel away from the profiteers, who are now flourishing from the fact that the medical community has not been fully successful in addressing the long term Lyme patient’s primal urge to survive and thrive, without suffering.

Joseph R. Baker lives in New Milford.

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