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.
Well when it comes right down to it treating the infections doesn’t work because those infections actively shut off the immune system to survive inside a person. Guess what happens whe you turn the immune system back on? It clears the infections.
Thank you for your excellent response to the misleading and misrepresented article by Zemel and Auwaerter. Your response was scientifically accurate and current. As a healthcare professional and chronic Babesia patient, I am always looking for ways to educate others about tickborne diseases . You did a great job with your response.
Thank you, thank you for responding to that hope crushing aritcle full of misleading and ignorant information. I appreciate the time and effort you clearly put forth in forming this excellent and well worded rebuttle. Bravo! And thank you from the bottom of my heart!
Disulfiram otherwise known as Antabuse is a cure for Lyme disease and some other confections. It kills the spirochete that lingers in chronic Lyme. It also kills Babesia. Many Lyme sufferers are already on this drug and reporting no remission after 4-6 months on it. Every Lyme sufferer should know of this.
I was bitten by a pacific ixodes tick in 2006 and had a huge bullseye rash.. I didn’t seek treatment right away because I was taking care of my terminally ill mother who had cancer. I was diagnosed positive by ELISA and Western Bot in 2010. The lab work was done through Stonybrook University Laboratory. My primary care doctor phoned Dr. Gilbert,former IDSA head to start treatment. I do not know what went on in their private phone conference, but after the phone discussion, I no longer had any treatment options and could not be seen without a referral to any other infectious disease physician. I left my primary doctor’s practice and emptied my bank account and lost a small inheritance just to see a doctor who would treat. I am currently in temporary HUD housing and without means.
No one has mentioned that the former CT attorney general carried out an antitrust investigation of the IDSA. They were forced to reconvene their lyme guidelines panel and were supposed to include other stakeholders, but Blumenthal moved on to the job as senator and did not oversee the result. So the IDSA just ended up doing the same thing again. And their proposed new guidelines are even worse. Apparently there is no justice and medical societies can do anything they like and get away with it. Regardless of how many people are hurt or dead because of it. Zemel and Auwaeter are two of the worst offenders. How do people go thru medical school and end up with such disregard for human life?
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