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We don’t have to wait for the CDC to start taking Lyme seriously

  • Published in Letters

To The Daily Sun,

There are more than 300,000 new cases of Lyme disease in the U.S. each year with a significant number of those in New England. We hear of the seriously ill who are dealing with pain and neurological issues severe enough to impact work, school and family life or the extreme cases where people are hospitalized, disabled or bed-ridden. You probably know you should seek medical attention if you are bitten by a deer tick. But unless you have — or a family member has — contracted Lyme you may not have heard of the difficulties patients have in finding a doctor to treat them or getting their insurance company to cover their care.

You may ask yourself, "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 Borrelia Burgdorferi, the bacterium that causes Lyme can become a formidable foe when it is not treated early. Like syphilis, it is a corkscrew shaped spirochete. Once it bores through your skin it likes to set up camp in your joints, brain, nervous system and heart. As it reproduces it can change its DNA to hide from your immune system. Lyme often 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.

When untreated over time it can cause a wide variety of symptoms that mimic other diseases such as rheumatoid arthritis, lupus, MS, ALS, Alzheimer's, or fibromyalgia and chronic fatigue syndrome which makes it difficult to diagnose.

But why would people have difficulty finding treatment? 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 that does not work for everyone. This leaves doctors and patients alike in a difficult situation. The CDC guidelines recommend a short-course of antibiotics for all patients: new cases, people who have been undiagnosed for some time, and those for whom treatment has failed before. Most doctors follow the CDC guidelines as they do for other diseases. However, some doctors noticing that not all of their patients get well, seek additional training and treatment options to better help their patients. Some doctors or their family members have experienced persistent Lyme themselves and they may dig even deeper into the latest research and treatments. But even those doctors say we just don't have all the answers about Lyme and we need much better testing and more research to better understand this illness.

The official CDC position is that treatment cannot fail and they therefore do not track the percentage of persistent infections or uncured cases. With the prevalence of Lyme in New Hampshire, it wouldn't take much digging and you would likely find someone in your town that is struggling with persistent Lyme. I have personally been dealing with the disease for nearly three years after an initial two-week course of antibiotics did not kill off all of the bacteria. 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.

What few people know is that on a national level the decisions about how to define, test for and treat Lyme disease and recommendations for what research to fund are made by a small group of people at the Infectious Disease Society of America. Most of these panel members have ties to insurance companies, pharmaceutical companies, vaccine companies or research labs that all have a big financial stake in the outcomes of this work. In the midst of this growing public health crisis, there are physicians who have been working on-the-ground treating hundreds, even thousands of patients and have much to add to what does and does not work.

However, the Infectious-Diseases panel members have used the power of 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 situation leaves physicians and innocent patients — adults and children alike — in limbo without access to the most recent knowledge. Health insurance companies often deny or cut off treatment based on the CDC guidelines and patients with persistent infections are left to pay for what care they are able to find and can afford. Though the CDC does not recognize the chronic Lyme diagnosis, some New Hampshire residents have been rejected for coverage by disability and life insurance companies.

One piece of good news is that with the passing of the Affordable Care Act, health insurance companies can no longer refuse to write policies for Lyme patients.

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 that 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 not care about disagreements in the medical community or battles with insurance companies. It just does what bacteria does 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 it 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 Massachusetts in 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 further their training by studying with the International Lyme & Associated Diseases Society to expand their knowledge. New Hampshire Lyme patients can find resources from Lyme 411, a Laconia-based support group.

To help stop the spread of this infection, the state of New Hampshire could offer free tick testing, track persistent infection numbers (including the number of people who have become disabled, or taken leaves of absence from work or school) in order to better understand how this disease is impacting New Hampshire residents. Finally, the state of New Hampshire, on behalf of New Hampshire residents, 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