Complications in the fight for Lyme treatments

An op-ed in today's paper (p. A12) refers to the recent litigious behavior of the Connecticut medical community in its persecution of a doctor who has never actually even harmed a patient.

Back in April 2009, the Westport News alerted the community to the current fissure over Lyme treatments, and we used as an example the plight of Dr. Charles Ray Jones of New Haven.

The 80-year-old has treated more than 10,000 children who have been debilitated by Lyme disease, and has been credited as "the only pediatrician in the world who treats Lyme," according to a Lyme-focused documentary Under Our Skin. As a result of criminal charges, the doctor is now forced to have his dealings with patients monitored. That case is under appeal, yet he now faces new criminal charges, and like the first case, the charges again stem from the fact that one of the children's parents disagreed with the medical decisions the other made.

"There have been no patient complaints, other than disaffected fathers involved in contested custody or divorce proceedings, and no harm has come to any of the children, who in fact have done well," Jones said in a statement he released this week.

In all cases, the children responded well to Jones' treatment, but the families are prosecuting based on a technicality -- the Infectious Diseases Society of America (IDSA) only approves a two-week Lyme treatment, and many times that's all insurance will cover. By contrast, Jones' theory is that a long-term antibiotic regimen is needed in the more severe Lyme cases, especially ones that are complicated by co-infections.

These co-infections that frequently accompany Lyme (and mask themselves as other problems) are what make the diagnosis difficult, and the cure nearly impossible, with just a two-week window of opportunity.

Jones has been striving to bring about new methods in treating victims of tick-borne diseases. As a pediatrician, he is dealing with the most fragile of patients.

Lyme is a baffling disease, and just the fact that doctors are so stymied about adequate treatments proves that these lawsuits, which seem to be more custody-based than anything else, are wasting valuable energy and resources. The Connecticut Department of Public Health, which is representing the patients in these lawsuits, is spending a great deal of money to go after a doctor whose patients have actually improved.

These cases also waste valuable time, which Lyme sufferers just do not have.

Lyme diagnosis is rarely straight-forward, and the ISDA-recommended treatments seem outdated to us, and do not currently recognize the Lyme co-infections. Jones and his contemporaries have been incorporating treatments that seem to be working, but have yet to get the official seal of approval. While some of these new treatments are not meant for everyone, patients -- or their parents -- should have the right to know what options are available, and to make use of them. In turn, doctors should be allowed to prescribe treatments they have proved will work.

Any doctor who is putting his patients at risk or is harming them deserves to have his or her license taken away. But that's not what's happening here with Jones. In fact, his license has never been at risk. Instead, he is getting bogged down by court dates and fines.

While some of Connecticut's legislators have realized the potential to improve Lyme treatment, they have not gotten enough support to protect doctors like Jones. Last year state Rep. Kim Fawcett fought to pass a law that now protects Lyme-specialists from the types of lawsuits that Jones has been facing, but Jones is being tried as a general practitioner, not a specialist, and as such is not protected by the new law.

This is a complicated and contentious issue, and we ask residents to become informed about the issues at hand, and to do so quickly. Time is not a friend of Lyme, and the longer patients go without proper treatment, the more the disease gets a permanent grip on its victim.

"I continue to believe, however, that it is critical for me to continue to fight these charges and to prevail," Jones said in his statement. "We must stand up for what we believe and know to be right in the matter of diagnosis and treatment of tick-borne disease. I am painfully concerned about the lack of effective care for children afflicted with tick borne disease. Because I decided to fight these charges when all of this began some six years ago, several thousand additional pediatric Lyme patients have received an appropriate diagnosis and treatment for their tick-borne disease."

The Lyme Disease Association, along with various Connecticut support groups had scheduled a rally in Hartford to support Jones. It was cancelled Tuesday because of bad weather, but the groups hope for another opportunity to show their support. For more information on how to support Jones, visit www.lymerights.org.

Refer back to this publication about opportunities to help the many infected and affected by the ravages Lyme disease.