Mystery No More: Life for Lyme Provides Invaluable Guidance Regarding Obscure-Yet-Debilitating Lyme Disease
By: Shimmy Blum
Leah, an 8 yr old girl, was complaining of headaches, backaches, dizziness, and nausea. After months of specialist visits, hospital stays and batteries of tests, there was no diagnosis in sight.
Chaim, a perfect student suddenly lost interest in yeshiva, had insomnia and couldn't get up in the morning. A year of psychologist visits and therapy sessions to prevent Chaim from “going off the derech" had no impact on his behavior.
Rochel was diagnosed with arthritis. Shmuel was diagnosed with Parkinson’s Disease. Miriam was diagnosed with multiple sclerosis. But their medications were not working.
The common denominator for all above cases, and countless similar ones?
The actual disease the patient suffered from was Lyme Disease, but neither the doctors, nor the tests, picked up on that. The true diagnosis was only discovered once the Life for Lyme organization was contacted. Baruch Hashem, the patients are now on the road to a full recovery!
There is perhaps no common serious disease that is shrouded in as much mystery and difficulty to diagnose as Lyme Disease and related coinfections such as Babesiosis, Bartonella and Tick Borne Relapsing Fever.
Enigma and misinformation are even prevalent within the medical field, leading otherwise competent doctors, hospitals and laboratories to miss warning signs and offer false diagnoses. Unfortunately, this has frequently led to long, excruciating delays until people afflicted with the disease have been diagnosed and treated. This delay makes the disease’s effects far more debilitating, even deadly, and the treatment options much more difficult and limited.
It is these realities that led Mrs. Esther Honig of Lakewood to co-found the “Life for Lyme” (Chai for Lyme) organization along with Menachem Resnick, a Brooklyn based Lyme Disease activist. The preeminent medical authority in the field - Dr. Robert Mozayeni, President of the International Lyme and Associated Diseases Society (ILADS) - serves as the organization’s chairman. Other partners in this great work include Avrumi Safier, Mrs. Mirel Goldwasser, and others who assist in case work, education and more.
Life for Lyme is a division of the Orthodox Jewish Chamber of Commerce’s Health and Medical Alliance, and has quickly developed into an invaluable community resource that has helped countless men, women and children in our communities identify and treat the disease. Duvi Honig, Esther’s husband, is the Founder and CEO of the Orthodox Jewish Chamber of Commerce. He explains, “The Chamber has developed into a powerful global network that reaches all sectors in the business and professional world. Thankfully, through our Health and Medical Alliance, we have been able to reach the top talent in the field of Lyme Disease and offer so many lifesaving services.”
In recent months, Life for Lyme has arranged two public teleconferences on Lyme Disease featuring Dr. Mozayeni, in which hundreds from across the nation participated. The organization also maintains an informative website and telephone hotline. Calls come in from across the country on a daily basis, and Life for Lyme counselors offer guidance, physician referrals and much more on an individualized basis. Life for Lyme also manages various support groups for those afflicted with Lyme Disease and their relatives, as well as those still in the diagnosis process.
On June 5th, the organization will be hosting its first live public event together with the Sephardic Bikur Cholim, featuring Dr. Steven Phillips, a prominent expert in the field. (The event will take place at the Sephardic Center, 1901 Ocean Parkway in Brooklyn, at 11:00 am.)
And Life for Lyme leaders relate, there is much more down the pipeline. “We are working to greatly enhance our educational programs for parents, physicians and educators,” says Mr. Resnick, “as well as offer funding, food and more to families suffering from the disease. There is so much that needs to be done.”
Mysterious but Treatable: The Lyme Paradox
When Lyme Disease and/or its various coinfections are diagnosed in time, all it typically takes is a regimen of antibiotics and the disease is gone. However, all too often the road is long, with many twists and turns along the way, with a heartbreaking amount of avoidable physical and emotional pain.
It can take a while for someone to notice a tick bite or accompanying rash. More importantly, people with Lyme Disease often do not even have a “bullseye” rash, which is widely seen as the telltale sign of the disease. People can be walking around for years, even decades, with the disease undiagnosed. One can get a deer tick bite without having hiked through a large forest and being aware of the need to check for tick bites. Deer ticks are “all over the place” in modestly wooded communities such as Lakewood and Monsey, let alone the Catskills – even around homes and schools, and on leaves in your yard.
Lyme Disease gradually attacks various bodily organs. The symptoms vary so greatly that they cannot be properly identified. It can cause rashes, heart disease, seizures, brain fog, joint pain, nerve pain, headaches, bells palsy, sleep issues, flu-like symptoms, high blood sugar, tingling muscle pain, insomnia, brain inflammation and short-term memory loss. Furthermore, many times the symptoms are merely behavioral – such as anxiety, OCD, mood swings and depression – so those afflicted will only consult a mental health professional for treatment, and never get to the medical root of the symptoms.
Complicating matters even more is the fact that there is no single reliable and conclusive test for Lyme Disease, as there is for virtually every other disease. Many people will discover that they have Lyme Disease after having being tested with various tests for the disease and getting a negative result, sometimes repeatedly. The bacteria can be very elusive in the lab, especially during its earlier stages.
As such, those with Lyme Disease can suffer for years, or decades – physically, emotionally and/or spiritually – without knowing what is wrong with them. Frequently, they are heavily treated and/or hospitalized for various diseases, yet see no relief. Their friends and relatives, even doctors, will often dismiss their symptoms as “in your head” – making the pain all the more unbearable.
A case in point is Dr. Neil Spector, one of the nation’s most respected oncologists, who helped develop two lifesaving cancer drugs. Dr. Spector had Lyme Disease for years, which neither he, nor any of his prestigious medical colleagues were able to diagnose – despite many symptoms. The disease was eventually discovered and treated once it hit his heart, and he required a heart transplant. Dr. Spector authored a poignant memoir, titled Gone in a Heartbeat: A Physician’s Search for True Healing, recounting his ordeal.
“The bottom line is that one should never give up in the search of a diagnosis, even after a battery of doctors and tests have ruled ‘everything’ out,” says Mrs. Honig. “There are so many such cases that we hear about, where the symptoms turned out to be a result of Lyme Disease. We owe this to ourselves and our children.”
That’s precisely why Life for Lyme remains so determined to help the public and medical community better prevent, diagnose and treat this dreaded disease, b’siyatta dishmaya.
For more information about Chai for Lyme, how to get involved, or to donate, please visit www.lifeforlyme.org.