Letter: Beware the tick; beware the doctor!

Thank you for your article on Lyme Disease; awareness of this insidious disease is crucial. However, some information in the article was misleading. Less then 20 percent of all Lyme patients present the classic bull’s eye skin mark and in some studies less then 15 percent of patients recall a tick bite. Seventy to 90 percent, as stated in the article, is incorrect.

Atypical forms of this rash are far more common and are pathognomonic of Lyme Disease and require no further verification prior to starting six weeks of antibiotic therapy. Lyme is and should be a clinical diagnosis. Shorter treatment, as stated in the article, has resulted in an upwards of a 40 percent relapse rate.

There has never in the history of the illness been one study that proves that 30 days of antibiotic treatment cures Lyme Disease. However, there is a plethora of documentation in U.S. and European medical literature demonstrating that short courses of antibiotic treatment fail to eradicate the Lyme spirochete. An uncomplicated case of chronic Lyme requires an average of six to 12 months of high-dose antibiotic therapy. Many patients with Lyme disease require treatment for one to four years, or until the patient is symptom free. Relapses occur and maintenance antibiotics may be required. There are no tests available to assure us the organism is eradicated or the patient is cured.

Lyme Disease is the No. 1 tick-borne illness in the United States. There are more than 25 different symptoms of Lyme Disease and the disease that has been called “the latest great imitator” is now found in every state in the country. It can attack virtually any system in the body. Estimates state that only one out of every 10 cases of Lyme is reported and many people are misdiagnosed. Current diagnostic tests are outdated and many physicians’ lack of experience with the disease and interpreting results often prevent an incorrect Lyme Disease diagnosis. These are “Lyme Illiterate” doctors.

I am a Lyme patient suffering chronic Lyme and am infused daily with strong antibiotics through my intravenous PICC Line (PICC: peripherally inserted central catheter) with a weekly visit from the home healthcare nurse. After intravenous treatment, I will be on a “cocktail” of antibiotics for a minimum of six months.

I have two girls who were treated in 2008 with IV antibiotics as well and missed months of school. They still suffer bouts of Lyme arthritis and fatigue. I am an avid runner and cyclist but because of the disease, have trouble walking up my stairs. I am suffering not only from the arthritis associated with Lyme but my heart has been affected as well. I suffer severe ocular pain and migraine headaches and overwhelming fatigue on a daily basis as well as other Lyme related symptoms.

I may never fully recover; therefore, finding a “Lyme Literate” doctor is crucial, a doctor who is willing to think “out of the box.” A Lyme patient must be treated clinically then followed with blood tests.

If gone undiagnosed by a doctor, Lyme can cause neurological problems, heart problems and problems with vision and hearing. Symptoms can come and go and be replaced by new symptoms that may be subtle or pronounced. Lab tests may not indicate an infection; the first few weeks following infection, antibody tests are not reliable because a patient’s immune system has not produced enough antibodies to be detected. Therefore, a wrong diagnosis can be made and many people go undiagnosed and suffer. If left untreated, Lyme can be fatal. My friend lost her husband from Lyme complications and “Lyme Illiterate” doctors. By the time he was properly diagnosed, it was too late.

It is very important to be your own advocate in the diagnosis of Lyme as well as finding a “Lyme Literate” doctor. It is an insidious and debilitating disease and is slowly becoming an epidemic. Please, be aware of any symptoms you may have and remember less then 15 percent of patients ever see the tick or the bull’s eye, as in my case and one of my daughter’s. Even with the bull’s eye, one can still be misdiagnosed. Lyme is prevalent in our area year-round.

The ILADS (International Lyme And Associated Diseases Society) Web site at www.ilads.org has a wealth of current and up-to-date information and offers a link to “Lyme Literate” doctors in our area. There is also a documentary on Lyme, “Under Our Skin,” which hopefully will help bring awareness to this crippling disease.

Kathy Krometis

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  1. Kathy is correct. Thank you for writing your experience. Lyme disease can mimic many other diseases & is often mis-diagnosed. The blood tests for are not accurrate, and are NOT to be used for diagnosis but alas mainstream doctors rely heavily on them to diagnose.

    The tick can also transmit other diseases. Yes, one can get multiple infection from the same tick bite.

    A great primer on Lyme & Tick diseases is the green booklet produced by the Lyme Disease Association of Southeastern Pennsylvania. The printable green booklet is at http://lymepa.org.

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