Dear Senators: 

I am writing today with a request that you support The Tick Health Act that has passed the Senate Health Committee.

I am a healthcare practitioner, advocate, navigator, with over 30 years of experience in the medical field and  have lived in New York,  Connecticut and Maryland for most of my life. Therefore, Lyme and TIck Borne Diseases is an area I am most familiar with.  I work with clients and doctors throughout the country and coordinate care for my clients with chronic illness (mystery illnesses ) that have often been misdiagnosed because the Doctor did not consider other possible diagnoses. “You cannot make a diagnosis unless you think of it”. I work to peel back the layers to get to the roots causes of their symptoms. That is why I am often called “Dr House” or a “Medical Detective”. 

When I moved to Atlanta, GA. just 4 years ago from the Northeast I quickly learned that there were virtually no doctors that recognized or even considered the possibility that ticks carrying Lyme and other tick borne diseases might exist here in GA.  In fact, I have been blatantly told that there are no ticks here and no such thing as Lyme Disease. However, for your information, The Lone Star Tick is very prevalent here and carries the Alpha Gal meat allergy with it.  The ticks that carry Rocky Mountain Spotted Fever are very prevalent here as well as other ticks. FYI: Three tick species are most commonly associated with humans in Georgia: the Lone Star tick (Amblyomma americanum), American dog tick (Dermacentor variabilis) and black-legged tick (Ixodes scapularis).

Let me share 2 cases that I diagnosed here in Atlanta, GA:

Two and one half years ago my son-in-law came down with what he was sure was the flu (a cluster of symptoms that often would appear to be the flu). However, he was put on an antibiotic and his sore throat, swollen glands, high fiver, severe fatigue improved. Within 4 weeks he had a relapse and was sick again. This time I suggested to my daughter that perhaps they needed to consider testing for Lyme and Tick Borne Diseases. They agreed and after no improvement and a 2nd round of antibiotics he went for testing. Fortunately, their doctor reached out to me and did the testing I requested. While standard testing, as you may be aware, misses the diagnosis 60-70% of time. He was diagnosed CDC positive. His Dr. reached out to me, again, and indicated she was sending him to an Infectious Disease Doctor. Would you believe the Dr. said he did not have Lyme Disease in spite of a positive test? He was also referred to a cardiologist as the internist was concerned about his heart.  I am happy to report that diagnosing him quickly, putting him on more than one antibiotic as well as an antiparasitic medication for 6 weeks and nutritional support for his immune system, an antifungal and probiotics, he is well today. I got a call from him, shortly after starting treatment and he was in tears. He said: What if you had not been here? I would have never been diagnosed. 

The other example is one of my granddaughters. At the age of 7 she and the family set off for a point north to escape the heat for the day. It was to be a day of fun and walking and playing and sitting by a campfire.  By the time they returned to Atlanta she had 104 fever, severe headache, diarrhea and severe sore throat. She was taken to CHOA and hospitalized. The ER doc agreed with my initial suggested diagnosis of Lyme or Rocky Mountain Spotted Fever or both. However, they did not start meds, but called for the Infectious Disease Dr. to consult the next day. Can you believe that he did not agree with the diagnosis? He refused to treat her! They had already isolated a parasite which often goes along for the ride. My daughter called  me distraught and after talking with me she went back and appealed to the ER doc. He agreed with my probable diagnosis and started her on two antibiotics to be spread over 2 weeks. The report ultimately came back  positive for Rock Mountain Spotted Fever. The Lyme diagnosis, was inconclusive, as it often the case. Again, we supported her with nutrition and immune enhancing supplements as well as probiotics. 

So Senators, here are two cases where we had to fight to get care and only because of over 30 years of being a good detective and thinking outside the box and coming from the North did we get the care that was needed in a timely fashion. This is what I do for my clients as well. 

We need extensive education for  the public when they go to parks, go hiking and camping. We need recognition of this serious and epidemic spread of ticks, not only here while never having been reported here and spreading to other states that never had those specific ticks found in those regions.

TICKS KNOW NO BORDERS!

We now know that changes in our environment and the warm weather means that ticks no longer die but continue to spread and thrive through the winter.  I am sure you are aware of Senator Kay Hagan who just died of a rare form of a Tick Borne Disease: Powassan. How many more lives have to be lost? 

Senators, I testified, just last year, before the Senate and House in the State of Maryland on a new bill that would allow integrative physicians to provide integrative and functional medicine approaches without being attacked unduly for providing care using methods that are not toxic and which utilize a multi prong approach, but are not “the standard of care”, because there are so many twists and turns in dealing with this illness. Should the diagnosis be missed after the initial period then we have people that develop multiple complex and chronic symptoms that can no longer be addressed with just a 30 days prescription of an antibiotic. 

I have written articles, about this public health threat, and worked with my, now deceased, husband who was a Pioneer in Integrative Medicine and made the discovery of what came to be known as Lyme Induced Autism. A foundation was set up to support research and work in this area and most especially recognizing neuropsychiatric symptoms that can result from the complicating co-infections that come along with multiple infections being carried by one tick. While this bill did not pass,  it brought attention to this problem of the divisive political stands that have been taken by the Infectious Disease Society Doctors just wanting to protect their “beliefs” while sacrificing untold thousands of patients throughout the US and abroad. “I wish to remind you that Science is not decided by Majority Vote.” These people are denied care, insurance coverage and considered to have various mental problems which are often addressed with antidepressants and the like. Why was AIDS taken seriously and work begun immediately to identify this illness and find forms of treatment that today not only save lives, but also allow people to function and live a full life? It is no longer a certain death knell.

I ask you Senators to stand up for the citizens of GA to provide for education for physicians of all specialties along with research, and funding to allow for the development of sensitive and specific testing for accurate diagnoses to be made and for patients to receive the care that they need to recover and get well rather than let them malinger, lose their jobs and become an emotional and financial burden to their families and society.  Why do people have to suffer? Why does politics dictate diagnosis and allow the drug companies and the insurance companies to dictate whether someone will or will not receive care?

Pass this bill and you will be a hero to many.  Pass the Legislation introduced by Senator Susan Collins and Tina Smith. We are almost there. The Senate Health Committee voted to advance this legislation. It is now your turn! 

Very truly yours, 
Susan Levin    

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