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Cyndi Paulin: Diagnosing and fighting Lyme Disease are not easy tasks

April 06. 2014 5:18PM

What’s the big deal about Lyme Disease? We hear of the seriously ill with problems severe enough to impact work, school and family life and the extreme cases where people are hospitalized, disabled or bed-ridden. But how do people get so sick? Doesn’t a couple of weeks of antibiotics cure Lyme? And if Lyme is so bad, why don’t I hear more from the government or medical experts about this?

Borrelia burgdorferi, the bacterium that causes Lyme, can become a formidable foe when it is not treated early. It bores through your skin, then migrates to your joints, brain, nervous system and heart. As it reproduces, it can change its DNA to hide from your immune system.

Lyme takes full advantage of immune system weakness such as allergies, auto-immune conditions or weaknesses caused by high-stress lives fueled by coffee, fast food, sugar and not enough sleep. Over time it can cause symptoms that mimic diseases such as Rheumatoid Arthritis, Lupus, MS, ALS, Alzheimer’s or Chronic Fatigue Syndrome, making it difficult to diagnose.

We haven’t yet learned the most effective way to test for Lyme or to treat persistent Lyme infections. The official CDC guidelines reflect a very conservative approach to testing and treatment, which does not work for everyone. These guidelines recommend a shortcourse of antibiotics for all patients: new cases, people who have been undiagnosed for some time, and those for whom treatment has failed before. Decisions about testing and treating Lyme Disease are made by a small group of people at the Infectious Disease Society of America.

There are experienced Lyme physicians who have been treating hundreds, even thousands of patients and have much to add to what works. However, the Infectious-Diseases panel members have used their position to exclude physician input or research that conflicts with their viewpoints. Thus the treatment guidelines remain narrowly focused and do not reflect this growing body of knowledge. This leaves physicians and innocent patients without access to the most recent knowledge.

Health insurance companies often deny or cut off treatment based on the CDC guidelines. Though the CDC does not recognize the chronic Lyme diagnosis, some Granite Staters have been rejected for coverage by disability and life insurance companies.

The official CDC position is that treatment cannot fail and they do not track the uncured cases. With the prevalence of Lyme in New Hampshire, without much digging you would likely find someone in your town who is struggling with persistent Lyme. I have personally been dealing with the disease for nearly three years after a two-week course of antibiotics did not work.

Six months and a series of escalating symptoms later, my primary care doctor gave me a referral for Lupus and Rheumatoid Arthritis, which turned out to be persistent Lyme.

In Lyme, we may have met the perfect enemy. It has a brilliant delivery system in the deer tick, which is so tiny it often goes unseen, and which has a painless bite. It adapts easily to the weaknesses in individual immune systems and can present with such complex and changing symptoms that it is easy to think it is something else. It does what bacteria do best, spread and reproduce, something it is doing very effectively here in New Hampshire. The question is, what are we going to do about it?

We don’t have to stand still while waiting for the CDC to act. If you find an attached deer tick, remove it carefully with tweezers and send it to be tested. (No hot matches or Vaseline since they can cause the tick to empty its stomach contents, delivering Borrelia or other infections directly to you.) Testing for the bacterium in ticks is over 99 percent accurate while testing for antibodies in people can produce many false negatives. The University of massachusetts at Amherst Amherst is the closest place to send your tick. If you get a bull’s eye rash from a tick bite, that equals a positive diagnosis. Make sure you get treated.

New Hampshire doctors can train with the International Lyme & Associated Diseases Society. The State of New Hampshire could offer free tick testing and track persistent infection numbers to understand the scope of Lyme’s impact in the state. Finally, the state could press for better national policy and more research. If we focus on public health as a top priority, we will find ways to better prevent and treat this infectious disease.

Cyndi Paulin lives in Farmington.

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