The Lyme Disease Epidemic and New York State

[Clyde]

I was glad to see a version of this published in today's newspaper. Unfortunately it's not online on pressconnects. Lyme Disease poses a serious, it's very real. This is worth a read, and it's also worth calling the office of Governor Cuomo and urging him to sign this bill.

 

With the possible exception of HIV/AIDS, no infectious disease in recent history has been as misunderstood, maligned or politicized as Lyme disease.

After more than two decades of controversy and government neglect, Lyme disease has become too large an issue to ignore any longer. A year ago, the Centers for Disease Control and Prevention reported that only 1 in 10 cases of Lyme disease were properly reported to public health agencies and increased the likely incidence to more than 300,000 new cases of Lyme disease in the U.S. per year. As a highly endemic state, a significant proportion of those cases are in New York.

For perspective, cases of HIV/AIDS number more than 50,000 annually, meaning that for every person diagnosed with HIV/AIDS, there are 6 people with Lyme disease. Ironically, the early years of AIDS were fraught with similar controversy that resulted in the epidemic spiraling out of control, while scientists fought over every aspect of the disease, from admitting that AIDS was actually an infectious disease, to who would get the naming rights for HIV.

There are thousands of people in New York suffering from Lyme disease, a bacterial infection that a few weeks of antibiotics may not cure. As with HIV/AIDS, both the existence of disabling symptoms and the possible cause are under dispute.

The current medical guidelines recommended by the CDC for diagnosis and treatment of Lyme disease provide no options for patients whose symptoms persist after antibiotic treatment. Despite numerous peer-reviewed studies showing that the bacteria responsible for Lyme disease can survive short courses of antibiotics, evade the human immune response and cause long-lasting infections that induce chronic inflammation, the Infectious Diseases Society of America refuses to revisit the guidelines to reflect the science.

Instead of addressing the contradictions between a vast body of scientific evidence and the medical approach to Lyme disease, infectious disease specialists point to perceived dangers associated with the use of long-term antibiotics as the reason to withhold treatment from desperately ill patients. This despite the fact that the IDSA supports the use of such treatments for other infectious diseases caused by persisting bacteria, such as tuberculosis, brucellosis, Q-fever and atypical pneumonia.

The IDSA insists their guidelines are evidence-based, yet reviews of the guidelines by outside groups, including the Institute of Medicine (the health arm of the National Academy of Sciences), reveals the evidence is primarily medical opinion based on a limited number of studies authored by members of the group impaneled to write the guidelines. The ethics of this approach have been criticized in multiple forums, including a report from the Institute of Medicine in 2011 titled "Clinical Practice Guidelines We Can Trust."

Most unfortunate for patients with persisting Lyme symptoms is the ongoing, orchestrated and targeted assault on the licenses of New York physicians who continue treatment of patients with Lyme disease whose symptoms don't readily resolve once the short-term treatment fails. This assault is done under the pretext of protecting the public's health. However, this tactic is an abuse of the system of physician reporting to the Office of Professional Medical Conduct of the New York state Department of Health.

Although numerous published studies show that nearly 1 in 3 people experience debilitating Lyme disease symptoms after antibiotics are discontinued, physicians who must choose among the evidence-based treatment options for Lyme disease will make that decision with their license in mind, and rightly so.

With the number of people with Lyme disease growing exponentially, the number of physicians available for those patients is decreasing, as a direct result of the actions of the OPMC.

Gov. Andrew Cuomo should sign the Patients' Rights/Doctor Protection bill (S7854-A7558B), which unanimously passed both houses of the state Legislature in June. Failure to do so will disallow New York Lyme disease patients access to physicians and medical treatments that could mean the difference between a healthy life and one of pain and disability.

[QueenB]

I'm glad that this issue is finally bring brought to light. I was diagnosed with Lyme in May of this year and I cannot even begin to describe the hell I have experienced since. Being transferred from Dr. To Dr. To Dr. To specialist etc. With no answers and no help for treatment other than a 3o day supply of doxycycline. The life cycle of the bacteria that causes Lyme is 7 weeks, so how does a 4 week supply of Doxy cure someone? It doesn't. I am still fighting this awful disease and the symptoms are horrible. My joints have severe inflammation and it is extremely painful. I have been on numerous medications that treat the symptoms but nothing that has cured the Lyme which is still present in my body.

[larrymoeandcurly]

I am very sorry to hear that , a friend or mine there child was diagnosed and they went with a PA doctor and more of a natural approach, it cost them a pile but its my understanding he has been lyme free for about 3 months now. If I can get the name I will post it here.

[QueenB]

Thank you I appreciate it. Due to the controversy over treatment and the government regulations LLMD's (Lyme Literate Medical Doctors) don't accept insurance or even advertise that they exist. I have looked into that route and seeing a specialist but office visits alone can be upwards of $1000 not including any of the prescription drug costs that can be prescribed as well. Unless you have big money it seems you get left to suffer.

[larrymoeandcurly]

I know they have about 10,000 in CC charges but your health should not have a price tag.

[ginger]

One of my aunts contracted Lyme disease. She lives in PA. It took a few years to correctly diagnose her.. they said she had anxiety. Once they figured it out she had an RN come to the house every morning to administer IV antibiotics. I don't recall how long the course of her treatment was, I'm thinking 2 months, but they did get rid of it. Too bad she had to suffer for lack of EVIDENCE. I'm sorry you're suffering too Rachel, I understand the disease can be nerve wracking.

[The West Sider]

I'm glad that this issue is finally bring brought to light. I was diagnosed with Lyme in May of this year and I cannot even begin to describe the hell I have experienced since. Being transferred from Dr. To Dr. To Dr. To specialist etc. With no answers and no help for treatment other than a 3o day supply of doxycycline. The life cycle of the bacteria that causes Lyme is 7 weeks, so how does a 4 week supply of Doxy cure someone? It doesn't. I am still fighting this awful disease and the symptoms are horrible. My joints have severe inflammation and it is extremely painful. I have been on numerous medications that treat the symptoms but nothing that has cured the Lyme which is still present in my body.

 

I know of a couple of people who have been successfully treated by a specialist in PA. If you are interested in the name of the physician, please let me know.

 

TWS