At the root of Lyme patients’ struggle for care is a heated debate within the medical community over how best to diagnose Lyme disease, the reliability of laboratory tests and the major difference between the definitions of chronic Lyme disease versus post-treatment Lyme disease syndrome (PTLDS).
Chronic Lyme disease assumes an active disease which continues to cause symptoms and PTLDS assumes a disease that has been treated and symptoms arising from damage that occurred during the active infection.
On the surface you can see how PTLDS just doesn’t make sense if someone is treated for the disease just weeks after being infected and then suffering an increase in number of symptoms and severity of symptoms. The logic is faulty.
Adding to the murky arguments are the medical doctors who have very little time to research due to their busy practices who pick up their IDSA (Infectious Disease Society of America) publications or go to the CDC website for answers. Medical practitioners claim a better understanding due to their perceived understanding when in fact it is the full time researchers who have a much better understanding and they have agreed from the very beginning of the discovery of Lyme disease that Lyme spirochetes persist in spite of antibiotics. In fact there are hundreds of published medical papers by researchers that attest to this fact. (The author of this blog will be publishing a book soon with the details backing up this claim.)
And yet in spite of the facts, the IDSA claims that the Lyme bacteria are killed off by 14- to 28-day courses of antibiotics. The guidelines, adopted by the U.S. Centers for Disease Control and Prevention, are based largely on a 2001 study that found no meaningful improvement and no active infection in 129 chronically ill Lyme patients after 90 days of antibiotic re-treatment.
The patients’ severe, lingering symptoms, from arthritis to neurological impairment, were real, the study concluded, but were not due to live Lyme bacteria. Most physicians follow the guidelines closely, in particular as nonconforming doctors have been targeted for discipline.
A recent article written by David Heitz and published by Healthline (in italics) states:
The debate over chronic Lyme disease — what the CDC calls “post-treatment Lyme disease syndrome,” affecting 10 percent to 20 percent of patients — reflects two polar viewpoints on Lyme: On one hand, it is a disease that is difficult to catch and easy to cure; on the other, it is a long-term threat that withstands medicine’s best pharmaceutical defense.
A key player in this fray is the state Office of Professional Medical Conduct, which oversees physicians and is obliged to investigate all complaints against them. Statistics show half of 8,501 complaints filed for all reasons in 2010 came from the public, and a small number, 3 percent, were filed by insurance companies, which are feared and viewed with suspicion by doctors who treat chronic Lyme disease.
“Physicians who care for patients with chronic Lyme disease are often ‘red-flagged’ by insurance companies” for incurring big costs, said Dr. Kenneth Liegner, a Pawling Lyme specialist, at a May conference at Skidmore College in Saratoga Springs. They “risk being subjected to sanctioning and ‘de-selection’ if they participate with insurance companies.”
Hence, many don’t, requiring considerable upfront payment — from $650 to $1,800 — that limits care to those who can afford it. Treatments are also costly: about $750 a month for drugs and supplies alone, some covered by insurance, plus $1,000 to $3,000 to insert an arm catheter that feeds drugs to the heart.
While costs are hefty, there is no evidence that insurers have reported Lyme doctors — complaints are confidential — and two companies declined requests to comment. One physician said state licensing officials began a probe just after a claim for antibiotic treatment was questioned by an insurer. At the same time, the licensing office itself was found to have contacted patients of a Dutchess County physician several years ago to encourage them to file complaints, two sources with direct knowledge told the Journal.
Ironically, the major contention against MD’s treating chronic Lyme disease has to do with the long term antibiotic treatments that are currently necessary due to the lack of a better treatment.
These same doctors don’t bat an eyelash over treating teenagers with years of antibiotics for acne, and they certainly don’t disagree about the years of antibiotics that are required for tuberculosis. So why the angst over Lyme disease?
Some believe it is the “tail wagging the dog” with insurance companies dictating to doctors what they will cover in treatment costs. Unfortunately this approach is pushing the problem off and making it bigger because the longer a person is infected, the longer it takes to recover.
Physicians who treat chronic Lyme say that medicine is sometimes an art as much as a science that calls for practitioners to try things in the service of healing. Some use oral or intravenous antibiotics or a combination, sometimes “pulsing” drugs in a week-on, week-off rotation. Some add alternative therapies and vitamins.
“Ultimately, you have to use your clinical judgment as a physician,” said Dr. Daniel Cameron of Mount Kisco, Westchester County. He said he frequently finds long-term oral antibiotics successful and prescribes intravenous drugs if needed.
At an outpatient clinic at Vassar Brothers Medical Center, about a quarter of patients receiving intravenous medications are under treatment for Lyme disease, many for longer periods than the guidelines suggest. The guidelines, essentially treatment recommendations, do not preclude such care.
“I’ve watched people come in who couldn’t walk,” said Carmela Legari, the infusion center supervisor. “You can watch the symptoms slowly dissipate.”
Such observations may be common in chronic Lyme circles, skeptics say, but are not science.
“If you are saying something works,” said Dr. Phillip Baker, executive director of the American Lyme Disease Foundation, “it’s incumbent on you to provide evidence that it works.” (Typical of the debate, there are several warring organizations, with Baker’s on one side and the Lyme Disease Association on the other.)
The question is how much and how long for Lyme. Patients interviewed varied from repeated two-month courses to up to a year of intravenous treatment, with varying results, and up to three years of oral medications.
Dr. Steven J. Bock, a family doctor and alternative practitioner in Rhinebeck, said he has treated 7,500 Lyme patients; he initially resisted the idea of antibiotics as an adherent of complementary medicine like acupuncture and herbs, which he also uses.
“When someone has been sick with a lot of multiple symptoms,” he said, “and then they go on antibiotics longer than the usual but they turn out on the other end 95 percent better — that to me is a clinical success.”
He acknowledged that some respond better than others.
Dr. Kari Bovenzi, one of few pediatricians who treat advanced cases of Lyme disease, believes longer antibiotic courses are necessary to beat back the hearty Lyme spirochete.
“There is something about this bacteria … it is a survivor,” said the Albany physician, who began treating Lyme after her own bout in 2009. “It took lots of antibiotics and other treatments for me to feel I could think again.”
Dr. Richard Horowitz of Hyde Park, who has treated more than 12,000 Lyme patients, the majority from outside Dutchess, said the naysayers are wrong.
“They are basically saying Lyme is easily diagnosed, easily treated and (those with lingering problems) are dealing with an auto-immune reaction,” said Horowitz, who lectured on Lyme in China recently at the request of the Chinese government. “Unfortunately, that’s not true.”
“Re-treatment (with antibiotics) does help patients,” he said. “There’s not even a doubt that re-treatment helps.”
Horowitz believes that many Lyme cases go undetected because of unreliable testing; others resist treatment because of co-infections from other bugs carried by ticks, such as babesia.
I continue to encourage readers that the researchers will eventually win this war with the mis-informed doctors who follow IDSA without being familiar with the snowballing evidence that blows hole after hole in the arguments set forth by IDSA and the CDC.
People are beginning to get angry with the CDC when they hear from a respected doctor like Richard Horowitz that instead of 300,000 new Lyme patients each year in the US that it is more likely one to two million new patients. The CDC is required by law to track epidemic and keep the American people safe from harmful infections. It would appear that they are doing the exact opposite.
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