Lyme Disease Symposium
It was a mix of personal story, statistical results, science and attitudes, bias and anecdote; six hours of testimonials, charts, facts and suppositions, questions, answers and more and more questions.
The testimonials were very powerful and disturbing, with an overall picture of either incompetence or indifference within the medical establishment. If routine protocols don’t work, some health professionals refer their patients to psychiatric doctors. The frustration and emotional turmoil of many of those whose family had experienced severe disability, and intrusive and insulting questioning about their personal habits because of the wasting powers of Lyme’s Disease, was palpable. The distress of the children who were put through grueling examinations of their behavior with the implication they were sexually active, lazy, or just “rebellious teenagers” was especially appalling.
Lyme is a pernicious disease because it masquerades as so many other things. We are told to look for a bull’s eye rash. Yet in many cases there is no rash. Many, perhaps most people, develop no rash. Or the rash may resemble a spider bite. “Don’t ever think of a spider bite without thinking of Lyme,” one presenter warned. Since the symptoms of Lyme often mimic other common and better known diseases, such as fibromyalgia, arthritis, sinusitis, Bell’s Palsy, Epstein Barr, multiple sclerosis, meningitis, heart problems or symptoms associated with old age such as dementia, irritability, depression and difficulty in finding a word when speaking, many doctors overlook Lyme as the actual cause.
Even accepted guidelines were questioned. Is it accurate that the tick has to be attached to the body for thirty-six hours in order to infect the patient? How do you know how long the tick has been there, since these are deer ticks that are only a fraction of an inch long, much smaller than other ticks also common in this region? One of the panelists remarked that the critical time the tick remained attached to the skin was too vague, ranging from twelve to seventy-two hours!
Since antibiotics are the main defense against the Borrelia burgdorferi bacteria that cause the disease, there was a great deal of discussion about their use and efficacy. According to Dr. Marty Schriefer, who spoke in detail about the clinical trials and procedures currently reviewed by the Center for Disease Control (CDC), the spirochete is detectable by culture only during the early stages of the disease. After the first week or two the immune system reduces them to unobservable rates. Antibiotics are apparently most effective at this time. (But the problem that the antibiotic could blunt the immune system has to be considered.) Once the bacteria go into hiding, many of the tests for Lyme show negative results. Serology tests are unreliable at this stage. A person may not have any positive indication of the disease from PCR, culture or serology and still be infected. On the other hand, cultures can confirm the presence of the disease months or years after infection begins. People with late stage illness that have had no treatment will almost always test positive by serology. There are no lab tests that can prove you are cured of Lyme, and this has left many people resigned to managing the disease in lieu of ridding themselves of it.
There appeared to be wide acceptance that the disease was vastly underreported. Although the official numbers in Loudoun County are about 3,600 per 100,000, a more realistic figure would be 14,000 per 100/000.
Is the deer tick the only tick that carries lyme? Apparently, yes. However, it is hosted on many animals, the prevalent ones being deer and mice. It is also carried on migratory birds. Our dogs and cats are often bitten by ticks and can get the disease.
Climate change favors northern migration of the disease, but it is migrating south as well.
There was some locking of horns between Dr. Paul Auewater of John Hopkins, and former President of Infectious Diseases Society of America, and the panelists. He questioned the effectiveness of extended uses of antibiotics, even as the lay witnesses felt that intravenous and prolonged treatment of their children was working. Despite several challenges from the panelists, he displayed equanimity and a consistent belief which he backed with references to studies that demonstrated no improvement with extended application of antibiotics, the three major ones being doxycycline, amoxicillan, and cefuroxime, and ceftriaxone if used intravenously. He emphasized that there are risks associated with these prolonged uses. This brought back much skepticism for the testing processes themselves from the panelists, including a rebuke from one doctor who assured Auewater he has had success with these protocols.
To add more complexity to the problem, ticks may carry other diseases with or without Lyme. In a New Jersey study of 100 ticks, 57 carried Lyme, Lyme and other diseases, or simply other diseases. About fifty percent carried Lyme. That tiny population cannot be used to extrapolate to other tick populations, however.
Virginia Delegate Bob Marshall made a brief appearance and talked about a bill he had tried to push through the assembly that required mandatory reporting of the disease. “If you don’t look for something you won’t find it,” he said. The bill passed delegation but the Public Health Department killed it. Dr. Phil Baker, former NIH Program Officer, has also advised against further treatment trials, and has testified against more funding . More ominously, certain doctors have been investigated for treating Lyme as a chronic disease. Some health insurance companies have denied the use of antibiotics for Lyme. These may be contributing factors in the average delay of diagnosis, which is presently estimated at 1.7 to 1.8 years.
Lyme disease has a cost, as every debilitating illness does. According to Dr. Cameron, 88% of the costs of Chronic Lyme Disease (CLD) were indirect and non-medical costs because of a loss of productivity. To treat early (acute) LD, he estimated the cost to be about $1,310 annually per patient. The costs shoot up to $16,199 per year with CLD. In the State of Virginia that means about $9M per year to treat early LD and $67M annually to treat CLD. “We need to catch the cases early and treat them before people go on disability. The Public Health Department is not paying attention to the legislative end,” he cautioned, adding, “We need protection for doctors treating Lyme”
There was a great deal of talk about the methodologies of testing, the gathering of data, the results and the conclusions. An overall view of the status of the response to Lyme gave the medical establishment a poor grade. The body of knowledge at present has been compromised by poor technique, sloppy data gathering, expectations that may be too high or low, small numbers of people participating in the testing, and very basic differences in the philosophy of treatment. Many people, including some of the panelists showed frustration at the “establishment” for what appeared to be incompetence, dragging of feet, and delaying tactics. Time was being lost.
In the end the guests, the panelists and the audience seemed to focus on the need to increase the funding for research, tighten the data banks and improve consistency and methods used in clinical trials. And as one father repeated in his testimony, while brandishing a hefty binder containing years of research, “Read the literature. Don’t believe anything.”