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Impact of "act that they want to pass" for those Who May Have Lyme Disease

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I began to see a different type of patients presenting to my practice about 10 years ago – patients with multiple complaints involving multiple organ systems with no clear explanation as to the cause of those symptoms. Many of them had complaints of an insect bite followed a few weeks later by muscle aches, joint pains, brain fog, palpitations. Most of them had seen several physicians licensed by the Board of Medicine and had been told that they had fibromyalgia, or anxiety, or depression, or rheumatoid arthritis. Many of them asked me if they could possibly have Lyme disease.

These patients had been treated symptomatically with conventional medications for pain, anxiety, depression, and even with drugs that suppress the immune system’s inflammatory response. Invariably the patients who came to me had experienced no or little relief of symptoms – in fact, many were becoming more ill rather than less ill.

Some of them had been tested for Lyme disease. Many of them were told that Lyme disease was not possible because they never saw a tick bite or a bull’s eye rash. Of those who were tested, most had been told that they tested negative, therefore they did not have Lyme disease.

Enough of these patients with unexplained illness (whom we sometimes call the Big Medical Clinic Rejects) were concerned about the possibility of Lyme Disease that I decided it would behoove me to learn something about the disease myself – and from sources that use the method of scientific exploration.

I had learned the “conventional wisdom” of my infectious disease colleagues and the Maricopa County Health Department that there is no Lyme Disease in Arizona. But I began to wonder whether that conventional wisdom was in fact accurate – and the more patients I saw who tested positive by less conventional and more accurate tests, the more I realized that Lyme disease in the larger sense of the word – vector-borne illness – was indeed present in Arizona, whether native or imported from other areas of the country. I felt these patients deserved to be treated by more effective means than symptom suppression or antidepressants.

The IDSA, Infectious Disease Society of America, maintains that (a) there is no such illness as chronic Lyme disease and (b) treatment with oral doxycycline for 2 weeks is sufficient to eradicate the organisms that cause acute Lyme disease. Symptoms which persist beyond the acute treatment phase are called “Post Lyme Disease Syndrome” and are definitely not related to persistent infection. The IDSA maintains that the conventional testing for Lyme disease is both accurate and sufficiently sensitive to determine whether a patient is in fact infected with the organism for which they are testing.

The conventional Western blot test offered through Sonora or LabCorp is for three species of Borrelia burgdorferi only, ignoring the multitude of other tick-borne species of Borrelia as well as Bartonella, Babesia, and other residents of the tick’s intestinal tract transmitted when the insects bites us and simultaneously defecates on us. The IDSA also maintains that a clinical diagnosis must be supported by positive laboratory testing.

Even the CDC – Centers for Disease Control – recognizes that Lyme disease may be largely a clinical diagnosis, and that a negative test does not preclude actual infection with tick-borne organisms.

ILADS, the International Lyme and Associated Diseases Society, has recognized for years that conventional testing is inadequate and incomplete – helpful when positive, but not when negative. ILADS recognizes several CLIA-certified laboratories which provide more complete and accurate testing for Lyme and co-infections. ILADS has published nationally recognized clinical guidelines for treatment of Lyme and associated illnesses.

Research in the past 5 years has discovered that the organisms which cause vector-borne illness not only hide behind biofilm, but also hibernate. Since antibiotics are effective against actively dividing organisms, the persister organisms are often not affected by the antibiotics, and are thus not eradicated. These “persister” organisms are capable of transmitting infection to other warm-blooded creatures for years. They can eventually be killed, but it often requires a combination of antibiotics with different mechanisms of action, and treatment may have to be prolonged – much like the treatment of tuberculosis, which requires therapy for a year or more. These vector-borne infections are often susceptible to the same drugs used for tuberculosis.

Lyme disease, vector-borne illness, takes hold in a body which is for some reason susceptible to infection. Like pneumonia, the disease is treatable. Unlike simple pneumonia, treatment may have to be prolonged and may require frequent adjustment of medications to eradicate the infection. Those physicians who see patients with Lyme disease on a regular basis are well aware of this possibility, and are prepared to embark on a lengthy course of therapy.

It seems that Lyme disease would fall well within the purview of Infectious Disease specialists. But my patients often tell me that they have tried to make an appointment with an Infectious Disease specialist, only to be told “this office does not see patients with Lyme disease”. How sad a reflection on the state of medicine in 2020, that the very specialists who treat infectious diseases are afraid to tackle Lyme disease and other vector-borne illnesses.

If our legislature can empower more physicians to treat patients with this disease, without fear of reprisal from their Medical Boards, then more of our citizens can be treated for this vector-borne disease which is now epidemic, and regain their health.

For this reason, I favor passage of this amendment of title 32, chapter 32, article 1, Arizona revised statutes, by adding section 32-3228; relating to health care professionals.