Readers Write: Action needed to combat Lyme Disease

The Island Now

May is Lyme Disease Awareness Month.

As the Island Now has reported in profiling my candidacy, Lyme Disease is an issue which is extremely personal and important to me – I battled the illness for a decade and a half. The experience I had dealing with the illness, the misdiagnosis, and the astronomical medical bills, was a major catalyst in my decision to run for New York state senate; to fight for expanded healthcare rights for all New Yorkers.

However, Lyme is not a political issue.

It is a disease that devastates people’s lives.

Unfortunately, for many decades the medical community, insurance companies, and even governmental agencies acted as obstacles to this patient community.

Unfortunately, this still remains true in many cases today.

So, my goal is to help shed light on understanding and navigating the often complicated and controversial aspects of diagnosing and treating Lyme Disease. This is vital.

Much material printed for mass readership during Lyme Disease Awareness Month paints the picture of an illness that can be easily detected and cured.

Sadly, this is not the reality for many patients.

Lyme diagnostic tests remain so unreliable that states like Maryland and Virginia have passed laws which require physicians to inform patients that a negative Lyme Disease test does not exclude the diagnosis.

Indeed, this is a law I would like to see passed in New York State and one I will fight for. My long personal battle with Lyme Disease occurred largely because of an antiquated, unreliable test that is known to yield false negatives.

So I ended up spending a decade improperly diagnosed.

We cannot allow this to continue. New York State has the highest number of reported Lyme Disease cases in the nation – and Long Island is focal to the epidemic.

So, for Lyme Disease Awareness Month I would like to provide some helpful points, that can guide residents on what to do if bitten by a tick and/or how to suspect Lyme based on symptoms:

  1. If you notice a tick on your body, remove it and preserve in a plastic container – because the tick can be tested for carrying Lyme disease. If the tick does test positive, the person needs to be treated for Lyme.
  2. Due to the tick’s tiny size, along with the fact they can land or crawl to a part of the body which may not be visible to a person’s eye, patients often never see the tick. That is why it is important to look out for what is called a bullseye rash – since it is shaped like a bullseye: appearing as a large outer ring surrounding a red dot.  If you have a bullseye rash that confirms a Lyme diagnosis.
  3. However, many people that contract Lyme never develop the bullseye rash, another hurdle to diagnosis.
  4. So, any patient suspected of Lyme Disease should request to receive both available tests: ELISA and Western Blot. However, it is important to remember that these tests are not conclusively reliable.
  5. Due to the unreliability of testing, if you or a family member has been bitten by a tick, strongly request to be treated prophylactically with two weeks of antibiotics. Early treatment is critical. There is no reason patients should be put at risk of ending up with chronic Lyme Disease when treatment at the onset of a tick bite can prevent the possibility of developing a life-altering illness.
  6. Since many people remain unaware of ever having been bit by a tick, there are symptoms to look out for: including extreme flu-like fatigue, joint pain, neurologic issues, Bell’s Palsy, rashes and other unexplained symptoms. Lyme Disease is often referred to as the Great Imitator since it mimics so many other illnesses.
  7. If bitten by a tick, I highly recommend seeking a Lyme-literate doctor who will take full measures to treat a tick bite, and who is also able to diagnose Lyme based on a combination of testing and symptoms.

To conclude Lyme Disease Awareness Month, I will be holding a forum and Q & A on Lyme Disease on May 30th, at Ayhan’s Mediterranean Marketplace in Port Washington (293 Main St.)

All are welcome to attend free of charge. Anybody who would like to contact me with questions on the issue may email me at: brad@schwartz4senate.com

Brad Schwartz

Port Washington

TAGGED: Lyme disease
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