More Funding Needed

For Tick-Borne Diseases

To the Editor:

In the summer of 1999, I, my husband and our three children were all diagnosed with Lyme disease. My children also had lab indications of ehrlichia infection and I was symptomatic and diagnosed with babesiosis. Unfortunately, we were diagnosed many years after first presenting with our symptoms. My son and I were not diagnosed early due to physician reliance on blood tests, we did not have a positive test and therefore all our symptoms were negated and our disease allowed to progress. Lyme disease is a clinical diagnosis; tests should only be used as supportive data. (CDC). Overreliance on imperfect tests can result in delay and failure to treat Lyme, which in the case of my family led to difficult-to-treat Lyme disease and unnecessary suffering.

I read with great concern the number of tick-borne diseases mentioned in last week’s article pertaining to Health District budget. Ticks harbor many diseases aside from Lyme. Ehrlichiosis, bartonella (cat scratch fever), babesiosis, are a few but there are others too. Many in our community are not aware that a tick may transmit more than Lyme, and if not diagnosed and treated early these diseases may be deadly    

In a recent issue of Emering Infectious Disease, John Anderson and Louis Magnarelli state that “With such extensive human exposure to ticks and a relatively large number of Lyme disease cases in these four towns [Greenwich, Stamford, New Canaan, and Darien] and elsewhere in Fairfield County, the number of cases of babesiosis is likely to increase appreciably in the future. B. microti [babesia] has been transmitted through blood transfusion in Connecticut. Blood collection agencies in southwestern Connecticut and adjacent Westchester County, New York, should be aware of the possibility that blood donors could be infected with this pathogen. Physicians should also be alert that patients could be co-infected with the etiologic agents of Lyme diseases or human granulocytic ehrlichiosis. Some patients in whom Lyme disease was diagnosed have been simultaneously infected with B. microti [babesia].” People who have been diagnosed with babesiosis are no longer eligible to donate blood…ever!

The parasite that causes Babesiosis may destroy red blood cells and cause a malarialike illness which is potentially fatal. It symptoms may include fever, chills, sweats, muscle pains, breathing difficulties, headaches, and malaise. Many symptoms overlap with symptoms of Lyme and treatment is different for that of Lyme patients.

You would be hard pressed to find someone in Newtown who did not at some point have Lyme or did not have a family member or neighbor with the disease. A growing number of students in our district are or have been on IV PICC lines for long-term antibiotic treatment. There are students requiring educational allowances and/or IEP and 504 plans because of cognitive and or physical impairment related to Lyme. There are also an increasing number of children who have missed numerous days of school due to complications of tick-borne diseases.

Millward Brown, the worldwide supplier of consumer research, did a survey regarding the presence of diagnosed Lyme disease in Wilton, Ridgefield, and Newtown. The results were 39 percent of households surveyed have some member who has been diagnosed with Lyme disease.

As a member of the Newtown Lyme Disease Task Force I receive too many calls similar to my family’s story. People who were not only denied treatment based on blood tests but misdiagnosed with other disorders which it can frequently resemble including fibromyalgia, chronic fatigue syndrome, multiple sclerosis, ALS, lupus to name a few. Lyme is often compared to syphilis because they are both caused by spirochetes and present as a multisystem illness. It may present with a variety of psychiatric disorders which may include but not limited to ADD, bipolar, sleep disorders, depression, and anxiety. Many people are left chronically ill.

The incidence of Lyme and other tick-borne diseases is increasing. An early analysis of CDC statistics indicates that national incidence rates climbed 39 percent between 2001 and 2002. Our children run the greatest risk of this disease. Deer populations are exploding and the number of ticks infected statistically is increasing.

Lyme disease is a major public health issue. Clearly more needs to be done, at local, state, and federal levels. We need funding to provide for proactive and expedient education of our community and physicians. Resources are needed to stop the spread, by reducing the tick and deer populations. Allocation of research funds for better testing, treatment, and cure. Unfortunately budget restraints at all levels impede the progress that so desperately needs to be made.

I commend our town and schoolwide efforts to safeguard our residents and create awareness. Bait-boxes surrounding schools and parks. Educational material provided by our Health District. Many thanks to the Newtown Rotary Club for sponsoring informational lectures, which have been invaluable and lifesaving too many. Thank you Drug Center for being a great resource. Thank you WIN [Women Involved in Newtown] for supporting the efforts of our Task Force. Our gratitude to The Newtown Bee, for you unending generosity to provide coverage on Lyme disease and for being such an important link to our community.

Tick season is here take the proper precautions, protect yourself and family!

Sincerely,

Maggie Shaw

Newtown Lyme Disease Task Force

Eden Hill Road, Newtown                                            March 24, 2004