Only knowledge will protect us from the silent epidemic, Lyme disease

To the Editor:

The overall complexity of Lyme disease as well as the absurdities of the political compliance has led to an ongoing nightmare.  Lyme disease is the fastest-growing and most common vector-born disease in America.  It is upsetting to see the severe lack of knowledge in awareness in the public and even in the medical community. 

I am writing this letter in order to help educate and support the community.  Motivation was sparked when I was little, having to watch my mother, Debbie Cubillos, fight through inconclusive medical issue after issue.

Countless doctor visits with no result, was common for my mom. “Frustration” doesn’t even begin to describe it.

Now, 20 years after the original tick bite, my mother is still enduring all the complications that resulted. Growing up alongside all of this has allowed me to slowly grasp the severity of this heartbreaking disease.

I am incredibly proud of my mom for all she has overcome and accomplished throughout her journey with Lyme disease. It is my hope that I can help others educate themselves on the serious dangers along with the complicated controversies that lie within diagnosis and treatment. 

Patients like my mother are often overlooked by doctors due to the Centers for Disease Control and Prevention’s rigorous definition of Lyme disease. They are left helpless, awaiting the worst stages of the disease.

A recent survey of 4,000 Lyme disease sufferers reported that the average patient waited over three years before being correctly diagnosed.  According to the International Lyme and Associated Disease Society, the sensitivity accuracy for Lyme disease laboratory testing is about 46 percent.  In fact, commercial tests miss more than half of patients with late-stage Lyme disease!

But surprisingly the CDC and Infectious Disease Society of America (ISDA) continue to promote these inaccurate tests.  In my mother’s case, she went misdiagnosed for over 15 years, causing an array of medical complications, ranging from cognitive defects, to life-threatening disorders.

My mom’s life was quickly turned upside down. She had to let go of her job as a nurse at Ellis Hospital, and struggle to care for her three children.

A common myth of Lyme disease is that, if you are lucky to be diagnosed and treated early, recovery will occur quickly with a short course of antibiotics. Early symptoms are very comparable to the flu. This may include joint pain, fever, headache, and chills.

In reality, some patients will have persistent symptoms even after treatment. More importantly, many do not even notice or have the telltale bull’s-eye rash and do not receive quick treatment.  Chronic Lyme then begins to develop, causing devastating, life-altering symptoms such as arthritis, personality changes, depression, and sensory/memory loss, just to name a few.

And, given all this, patients are then rejected by the CDC and IDSA because they do not fit into their narrow guidelines.  According to the ISDA, chronic Lyme disease does not officially exist.  This affects the Lyme specialists who, if they act otherwise, risk their medical careers trying to treat long-suffering patients.

The CDC admits its case reporting is likely off from six- to 12-fold, making it 300,000 Lyme cases a year.  HIV (human immunodeficiency virus) has a reporting of around 30,000 diagnoses a year.  Does that put the seriousness of this issue in perspective?

Granted, not everyone who is diagnosed develops a chronic illness.  Nonetheless, I think the word “epidemic” is appropriate in this instance.

The only way we can protect ourselves from this silent epidemic is to gain the proper knowledge. Despite the many unknowns, continued support and prevention is a necessity

I whole-heartedly recommend Andy Wilson’s compelling documentary on Lyme disease, Under Our Skin.  Wilson does an extraordinary job illuminating some dark aspects of the disease.  It is such a powerful film, that some claim it saved their lives.

There are plenty of ways to get involved.  For more information, you can visit http://www.empirestatelymediseaseassociation.org.

Marissa Cubillos

Guilderland

Editor’s note: Melissa Cubillos, currently a Syracuse University student,, has been working to support Lyme disease awareness locally, recently raising $800 for the Empire State Lyme Disease Association with a T-shirt fundraiser.

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