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Lyme disease season: time to dispel the myths

Myth: Lyme disease is hard to get and easy to cure. Fact: Tens of thousands of Minnesotans got Lyme disease in the past 10 years, and very few of them will EVER be cured. At least, not before the mainstream medical establishment and Lyme disease specialists stop arguing and figure out how to treat it.

Lyme disease is spread by deer ticks, which are expanding their range in the state. According to the Minnesota Department of Health, one in three deer ticks carry the bacterial agent of Lyme disease, Borrelia burgdorferi (Bb). In high-risk areas of the state, such as Crow Wing and Washington counties, it's two out of three. Climate change affects both their range and their dormancy; as the cold season gets shorter, the tick season gets longer. Deer, rodents and birds can disperse these blood suckers just about anywhere, so even city-folk are a risk. Indeed, the Metropolitan Mosquito Control District has found deer ticks in each of the seven metro counties.

I don't say this to breed panic, but to get people to sit up and take notice: You are a tick bite away from getting Lyme disease. And very few doctors in the state truly understand or are willing to treat Lyme disease aggressively. A recent Minnesota Board of Medical Practice resolution may change all that.


Last month, the medical board voted on a five-year moratorium from investigating doctors who treat chronic Lyme disease with long-term antibiotics, unless a complaint is filed against them by the patient or their guardian. The board agreed with Lyme specialists and activists that the science is unsettled, that much more evidence needs to be gathered in the treatment of the most common vector-borne infectious disease in the country (Minnesota ranks 8th for reported cases). Doctors are still responsible, of course, for informed consent and conscientious, evidence-based medicine.

Inadequate tests, flawed studies
Inadequate diagnostic tests, flawed studies that inform prevailing treatment guidelines, and ignorance about what the infection does in the body result in misunderstandings about the diagnosis and treatment of Lyme disease.

After a person is infected through the bite of a deer tick, Bb doesn't stay long in the blood stream. It burrows into tissues and cells, sabotaging multiple systems along the way. This is why different people react with a varying array of symptoms. The tests are designed to detect antibodies to the bacteria in the blood, not the bacteria itself; for this and many other reasons they cannot be relied upon to prove the existence (or absence) of Bb. Lyme specialists, including those from the International Lyme and Associated Diseases Society, advocate a clinical diagnosis, taking patient symptoms and environmental history into account. Unfortunately, if the person who is bitten waits for symptoms to manifest, they are already infected.

The prevailing guidelines for diagnosing and treating Lyme disease are the work of the Infectious Disease Society of America. It claims, despite evidence to the contrary, that a single oral dose of doxycycline will "cure" a bacterial infection - even one that has likely spread throughout the body, including the heart and/or brain. Studies on animals have show Bb can persist beyond this recommended treatment.

Based on her review of the scientific evidence, the Minnesota Lyme Action Support Group medical advisor, Dr. Elizabeth Maloney, recommends at least 20 days of 100 mg doxycycline (for adults who can tolerate it) immediately after being bitten by a deer tick in a high-risk area. If treatment is postponed after the bite, longer, more aggressive therapy should be discussed and decided upon between the patient and his or her Lyme specialist.

Thanks to the MBMP resolution, doctors who care for Lyme patients won't worry about losing their license in the process.  

Monique Dubos is a freelance journalist; she handles communications and public relations for the Minnesota Lyme Action Support Group.

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Comments (4)

Monique,

Excellent article and excellent advice. People across the country need to know that this disease is nasty. Though, it does not need to make us all neurotic, but taking the proper precautions and being honest about its threat is the best defense.

Without being too paranoid, we need to think the worst and get treated earlier rather than later. If it is in your system for any period of time, it is harder to get out.

Don't rely on seeing a bulls eye rash, and don't trust blood tests. Strange but Great advice.

If you begin feeling several strange symptoms over a short period, something is probably wrong. It just might be Lyme.

Rob

Thank you so much for your very comprehensive article about Lyme. Early detection can save people from terrible suffering, as I have had due to many long months of misdiagnoses.

I just wanted to add that a new DNA test for early detection is now in use in Milford, CT. If interested, you can listen to a brief interview with Dr Sin Hang Lee, the pathologist who is responsible for the test, at http://www.lyme-disease-research-database.com/lyme_disease_blog_files/ly...

Thank you again for your excellent post.

Monique-- I was diagnosed and treated in '92 for Lyme, and the treatment was easy and short. But the troubling points are that there are so many undiagnosed and untreated cases coming to light now, and that the current treatment is much more intensive than the one I received. I wonder, often, if and how many times I may have been bitten by one of these tiny bastards and never knew it. Of course, with me being a hypochondriac, I identify with all of the symptoms. But I cannot deny that many of them do exist, and it isn't all due to all those years in martial arts or bartending.

The biggest problem? I'm unemployed, broke and have no health care, so I guess I just have to take it. Here's hoping MinnesotaCare has a spot for me, before I find one of those big red spots on me!

Monique,

Your excellent article is being read nationwide by those interested in Lyme disease. Thank you for the service that you have done with this article, not only for those in MINN, but for those around the country.

As a psychotherapist who sees Lyme patients and families, I can attest to how serious and debilitatiing this disease can be, if not treated early or comprehensively. The impact on the lives of children is particularly profound, as they are unable to attend school full time, or at all, suffering unremitting pain, sleep problems, and difficulty learning, just to name a few common symptoms.

It is outrageous that physicians around the country fear actions by their licensing boards should they decide to treat chronic Lyme disease. And yet that is the case. I applaud the action taken by the Minnesota board, clearing the way for physicians to enter this specialized and difficult field of medical practice, without fear of sanctions.

The IDSA hearings last July, still available for viewing on the IDSA website, clearly shows that the science is on our side, not on the side of the IDSA. If anyone doubts that, they should take the time to listen to the oral testimony, and read the written ILADS testimony on the ILADS website. Although the science is unsettled, evidence indicates the value of long term antibiotic treatment, and treating the coinfections.

At the very least, patients should have the right to choose which standard of care they wish to pursue.

Sandy Berenbaum, LCSW, BCD
Southbury, CT