Many Lyme disease activists and patients assert that Lyme disease is a difficult-to-treat, chronic infection that requires long-term consumption of broad-spectrum antibiotics. (See common beliefs about Lyme disease.) Although medical practice and clinical trials suggest otherwise [15], many Lyme patients undergo long-term intravenous antibiotic treatment.

For appropriate intravenous antibiotic treatment, the American College of Physicians recommends 21-28 days and various European guidelines call for 10-30 days for the commonly used drugs. Much longer usage has been reported among patients who have Lyme disease as well as patients who have been inappropriately diagnosed [16-18].

Outpatient intravenous therapy is a multi-billion-a-year business. It remains
largely unregulated and can cost patients thousands of dollars per week.
Price-gouging, drug markups, kickbacks, and self-referral of patients by
physicians with financial ties to infusion companies have occurred. In 1995,
for example, Caremark, Inc., pled guilty to mail fraud charges for entering
into illegal contracts with physicians by paying them to refer Medicaid
patients to use Caremark’s infusion products. The settlement provided for
approximately $44.5 million in civil penalties and restitution from Caremark
[19]. In Michigan, prosecutors charged a physician and Caremark employees with
scheming to overbill Blue Cross/Blue Shield for drugs and equipment for
patients with Lyme disease [20].

The intravenous antibiotic therapy administered to Lyme patients sometimes has
disastrous results. During the early 1990s, the CDC described 25 cases of
antibiotic-associated biliary complications among persons with suspected
disseminated Lyme disease [21]. All patients had received intravenous
ceftriaxone (Rocephin) for an average of 28 days for suspected Lyme disease.
(Ceftriaxone can form precipitates in the presence of bile salts. The resulting
“sludge” can block the bile duct.) Twelve patients subsequently developed
gallstones. Fourteen underwent cholecystectomy to correct bile blockage.
Twenty-two developed catheter-associated bloodstream infections. Yet most of
the patients lacked documented evidence of disseminated Lyme disease or even
antibodies to B. burgdorferi. In 2000, physicians reported the death of a
30-year-old woman who died from an infected intravenous set-up that had been
left in place for more than two years. She was being treated for “chronic Lyme
disease” that was unsubstantiated [22].

The risks and costs associated with such treatments were analyzed in a 1993
report whose authors concluded that most patients with a positive Lyme antibody
titer whose only symptoms are fatigue or nonspecific muscle pains, the risks
and costs of intravenous antibiotic therapy exceed the benefits [23].

In an Internet newsgroup post, a woman described being on intravenous Rocephin
for 4 weeks, developing gallstones, and switching to another antibiotic regimen
for three weeks. She also mentioned a sudden high fever, anemia, low white cell
count, systemic pain, heart rhythm disturbance, and neurologic symptoms. Such
descriptions are common among devout Lyme patients and provide an unsettling
view into the desperate and dangerous measures some people will take to treat
suspected Lyme disease. The woman ended her account by writing she had switched
her medication to ciprofloxacin. This drug is potent but should not be used
unnecessarily. Its adverse reactions include acute psychosis and other
neuropsychiatric reactions [24].

Another patient said he was treated at a Mexican clinic where the doctor
admitted that he and his staff knew little about Lyme disease. The patient
wrote, “I started on IV Rocephin (two grams a day), and later added oral
azithromycin. My symptoms did improved, but I soon hit a treatment plateau. We
then tried IV doxycycline, but this made me sick to my stomach.” He goes on to
describe a long list of other drugs (IV Claforan, Cefobid/Unisyn, Premaxin, a
second round of Cefobid/Uisyn, and IV Zithromax), followed by bouts of “severe
diarrhea” and phlebitis. Three months and some $25,000 later, DMSO was added to
another infusion of Zithromax.

A number of these so-called “Lyme-Literate Medical Doctors (LLMD) have been
investigated for their extensive use of powerful intravenous antibiotics and
other unconventional practices. In New York State, the Office of Professional
Medical Conduct (OPMC) is investigated two or LLMD about their treatments of a
large number of patients diagnosed as having chronic Lyme disease.

Such practices are likely to draw even greater scrutiny with the recent
publication of the results of two clinical trials on chronic Lyme disease. The
investigators noted “in these two trials, treatment with intravenous and oral
antibiotics for 90 days did not improve symptoms more than placebo.” [15]