Lyme Disease: A Controversial View

Fall of 1999. The symptoms, extreme fatigue, headaches, joint pain, stiffness and the symptoms would be up and down. You'd start feeling a little better than crash again. The up and down symptoms continue throughout the illness getting worse as time goes on. It was about 1 ½ years before I was finally diagnosed in February 2001 after seeing four doctors in CT and moving on to Lahey clinic in Mass and saw 7 physicians in various specialties. They ran just about every test you could think of. The MRI showed lesions on the brain. This led them to believe I was in the beginning stages of MS because of the numbness in my extremities. People with Lyme disease can produce the same protein bands as MS people in a spinal tap. MS is also a clinical diagnosis.

How has Lyme disease affected your life?

You have to plan your life around your health. You never know how you will feel from one moment to the next. You lose the ability to work a full-time job. To take part in the ordinary everyday life style can be too much. If you woke up tomorrow feeling like I do when I'm having a good day, you'd stay in bed. It's like living in Hell without the fire.

What is the problem with the testing system with Lyme disease today?
The CDC recommends that the Lyme Western Blot be performed only if there is a positive or equivocal Lyme ELISA . Now, pay attention to this part. If the Elisa is negative, they will not do the Western Blot. By today's diagnostic criteria, if you test negative by Elisa you don't have Lyme disease. But, if you test positive by Elisa, you still don't have Lyme disease but now they will run the Western Blot test. Per the FDA meeting in June 7, 1994 " Food and Drug Administration Center for Biologics Evaluation and Research, Open Meeting of: The Vaccines and related Biologics Products Advisor Committee states per Dr. Dattwayler, "the sickest people will not produce antibodies and therefore will test negative on the Western Blot". They have known this since 1994 and have done nothing to correct the problem.

Are other illnesses sometimes misdiagnosed when they are really Lyme?

Yes, Fibromyalgia, Chronic Fatigue, Lupus, many, many cases of Arthritis and even MS and ALS could and have turned out to be Lyme disease. The Greater Hartford Lyme Disease Support and Action Group in Farmington have helped over 100 people who were diagnosed with MS who actually turned out to have Lyme disease. The majority of these MS people did not meet CDC surveillance criteria but keep in mind, the criteria is for surveillance and not a diagnostic tool.

Is there an ignorance regarding the epidemic of Lyme in Connecticut and the country? What about doctors that specialize treating Lyme disease that have their licenses suspended?

Yes, most doctors are using the CDC Surveillance criteria to base their diagnosis for Lyme disease. The CDC also states that for every person that meets this criteria there are between 10-12 who do not meet this criteria and they actually have Lyme disease. The CSTE, Council of State and Territorial Epidemiologists have also started to recognize clinical diagnosis http://www.cste.org/position%20statements/searchbyyear2007.asp. They have also indicated that the surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis. Unfortunately, most doctors in CT and across the Country still base their diagnosis on the results of the flawed testing for Lyme disease. I would say the only sure way to get diagnosed is to have the Bull's eye rash associated with Lyme disease. But from personal experience, my daughter came down with Lyme disease and her PCP told her that the rash was a surface skin reaction to a bug bite and her flu like symptoms, in the middle of June, would subside. She had the classic bull's eye rash and she was misdiagnosed by her PCP. Less than have the people get a Lyme rash and the bulls eye is the least common. Some doctors claim that over 80% of the people get the rash, but that's because it's the only time they will recognize and diagnose a patient with Lyme disease. As far as doctors treating Lyme, we have been told by many doctors that they can't get involved. If they treat Lyme disease they become a target. They realize that Lyme can be hard to diagnose and is not always treatable with the recommended course of treatment being 14-21 days. If a teenager has acne, the doctor is allowed to write a script for antibiotic for a year at a time, but Lyme seems to be held to a higher standard.

What would you like to see done with Lyme disease?

The Greater Hartford Lyme Disease Support and Action Group posted a $20,000 REWARD to any Physician that can prove that the Lyme bacteria Borrelia burgdorferi is eradicated after 42 days of antibiotic treatment in all cases. The reward was posted for over five years and not one challenge was ever offered. The reward was designed to be controversy, stimulant discussion and call a spade a spade and I believe it did that. I decided to end the reward today (3/5/09), because the evidence is clear and very strong that Lyme cannot be eradicated after 42 days of treatment." The reward included other co-sponsors that supported our goal of the reward as well as financial terms. (www.ctlymedisease.org) Per Dr. Gary Wormers, member of the IDSA, Infectious Disease Society of America, on his paper published in the Journal of Clinical Microbiology, Dec 1993, p. 3090-3095, only 9 out of 59 people tested positive using the 2 tiered system leaving approx 85% of the people who have Lyme without being diagnosed and treated.

With testing this inaccurate, how can any doctor state that it's cured in 21 days, 21 weeks, or 21 months. With testing so inaccurate, if you can't tell you have Lyme disease how can you tell you're cured in 21 days? For a complete listing of government documents that show treatment failure and inaccurate testing, go to www.lymecryme.com