Frustration of finding treatment adds to pain for sufferers
By DEBRA BROWNLEY
- Times Staff
Photo courtesy of Vicki Karam Smith
From left, Lovette
Mott, Dr. Harold Smith and Vicki Karam Smith display the two-by-two-foot quilt panels made by some of the local
Gettysburg Lyme Disease Support Group members. Many more quilts will be on display at the rally April 8. The quilts
are designed and made by each individual dealing with the effects of Lyme. Dr. Smith was an emergency room physician
who had to stop practicing due to the devastating effects of Lyme disease. He will also be speaking at the symposium
at The Gettysburg Hospital.
Those suffering under the epidemic
of Lyme disease are finding treatment difficult to come by, thanks to the bite of medical bureaucracy.
I m basically scared to death that there s not going to be anyone to help me, 19-year-old Rebecca Peake of Bonneauville
said with tears in her eyes.
Peake was seen 12 times by a physician before she was diagnosed with Lyme disease in May 1999. The disease, caused
by corkscrew-shaped bacteria (spirochetes), is transmitted by tiny ticks belonging to the Ixodes family. In the
Northeast, the most common proven carrier is the deer tick.
Peake did not see the tick that bit her or had a telltale bullseye rash that is present in about 60 percent of
Lyme patients. Her symptoms included severe fatigue, flu-like achiness, mild depression and her school grades started
We chalked it up to stress because she was in her senior year, said Rebecca s mother Teresa.
The girl called to schedule an appointment to begin IV therapy on a Monday morning and the next day, she was informed
that her doctor was no longer practicing medicine. He was one of 16 Lyme disease specialists in New York who are
having their licenses revoked for prescribing long-term antibiotics.
Other Lyme specialists in New Jersey, Michigan and Connecticut have had their licenses revoked as well.
Many Lyme patients living and coping with the disease in Adams County travel hundreds of miles each month to seek
out these literate physicians.
We re all traveling to New York because our doctors don t know enough about Lyme disease, Teresa Peake said.
Her daughter is one of four patients from Gettysburg who makes the 12-hour round trip, which usually requires an
overnight stay. On the way back from their first doctor s visit, the Peakes were involved in a serious automobile
Meanwhile, Peake, a senior in high school, is deathly ill. She fears that if she is unable to hold down a full-time
college schedule in the fall that she will be taken off her parents health insurance.
When not treated properly, which
often may involve long-term antibiotics, the spirochete (bacterium) often returns with greater impact and more
complications months later.
I was just getting to the point of feeling well and now it looks very bleak, said 14-year-old Joni Smith of Gettysburg,
who was diagnosed with Lyme disease in March 1995.
Peake and Smith were seeing Dr. Perry Orens of Great Neck, N.Y., who specializes in pediatric Lyme. He was the
first physician to have his license revoked by the New York State Department of Health, Office of Professional
Medical Conduct on Nov. 25, 1999. Now, the two teens are left in limbo, not knowing where to turn for treatment.
We know Rebecca needs the IV therapy. Now, where does that leave us? her mother asked. It s a sick feeling because
we don t want her to get started, and then have to stop because some doctor gets his license pulled.
Ken Trimmer, 64, of Biglerville, was also a patient of Orens. He was borderline positive for Lyme disease because
of taking antibiotics for 10 days prior to the tests. Trimmer s pain started in his hips, then moved from his lower
back to his knees, migrated to his shoulders, elbows, wrists and finally to his knuckles.
For three weeks, I couldn t hold onto the steering wheel or a cup of coffee. I couldn t button my clothes, Trimmer
Trimmer was also bleeding internally and was anemic. He had such terrible pains in his joints that it suppressed
his appetite, and he lost 30 pounds. His family doctor originally diagnosed his condition as a pinched nerve in
I feel that if I hadn t have gotten to Dr. Orens, I would have been bed ridden by now, Trimmer said. Now, if I
need any more treatment, I have no one to go to.
Trimmer has since returned to his family physician, who re-diagnosed his condition as rheumatoid arthritis and
continues to take the antibiotics for Lyme disease that was prescribed to him by Orens.
Some Lyme disease patients go in
and out of remission, which causes astronomical medical bills. A lot of insurance companies are not willing to
recognize the treatment or pay for it because, in many cases, it s a lengthy course of intravenous antibiotics.
The bottom line it s all about money and the insurance companies challenging the specialists treatment recommendations,
said Joni s mother Vicki Karam Smith.
After seven weeks of IV treatment with Orens, many of Smith s symptoms subsided. She didn t have as many headaches
or stomach aches, and she was able to attend school on a daily basis.
My grades have drastically improved back to where they used to be ... and my vision s back ... and I m not dizzy
anymore, Smith said, adding that she used to fall down the steps.
After discontinuing IV treatments, her headaches returned. (The spirochete cycles every 28 days and releases toxins,
which cause Lyme victims to have recurrent headaches.)
At that point, Orens referred her to the Columbia Presbyterian Medical Center in New York for a brain SPECT scan
last November. The brain scan cost thousands of dollars and is still under appeal with the insurance company.
Later that month, Orens license was revoked, forcing Smith to resort to prescription refills of oral antibiotics.
Then she found another Lyme literate physician in Westminster, Md. So far, all of Smith s tests are negative and
she is now in remission.
Trimmer also said it s questionable as to whether or not antibiotics prescribed by Orens and others, who have had
their licenses revoked, will continue to be refillable. But for now, the insurance companies seem to be honoring
Lyme experts targeted
Many doctors shy away from treating
Lyme disease because they re unwilling to contend with harassment and fear losing their licenses. The ones who
have not, usually have a family member or a close friend that sparked their interest in pursuing long-term treatment.
Thus was the case with Orens, whose own daughter has been undergoing treatment for 14 years. She is currently seeing
Dr. Joseph Burrascano Jr. of East Hampton, N.Y. At one time, he also had Lyme.
Burrascano is one of the nation s leading Lyme experts and the latest to be targeted. Last July, investigators
searched and temporarily removed files from his office.
Burrascano has also been treating Lovette Mott, 43, of Gettysburg since last February. However, she was first diagnosed
with Lyme in August 1998. Mott was treated by several local physicians before being referred to Burrascano.
Since the last two-part Lyme series published in the Gettysburg Times, which featured the Mott family, her condition
has worsened. She spent five days in Harrisburg Hospital with what doctors thought was an infection in her back.
For two months, Mott wore a back brace. Then physicians concluded that it was probably Lyme.
Her husband Ken, 60, and their 12-year-old daughter remain symptom-free. However, the Motts 14-year-old son is
still battling Lyme and has some short term memory problems.
Lovette Mott had an established law firm on Baltimore Street in Gettysburg, but has since had to give up her practice.
Orens and Burrascano have held regional and national meetings on Lyme. And yet the very people who are trying to
educate their profession are under investigation, Ken Mott said.
By law, all complaints filed against
a physician must be investigated. In New York, the precise charges are kept secret and the complainant is allowed
to remain anonymous. But in many cases, it is the insurance company that has filed the complaint.
According to Michael Schoppmann, a New Jersey medical malpractice lawyer, insurance companies investigate any physician
whose practice involves more than 15 percent Lyme patients.
At a Southeast Pennsylvania Lyme Disease Conference held in June 1999, Schoppmann told attendees that over a three-year
period, investigators go through all the doctor s records, then present the information to the state medical board,
which goes after the physician s license.
Orens said he was questioned by the Office of Medical Conduct seven years ago because of a complaint, but then
there was a long period of time where he heard nothing. The 72-year-old physician s license was revoked last November,
three years after he retired.
Orens claimed that investigators seized 16 of his patient files, but never called on any of them to take the stand
during a hearing. One of the files seized was that of his own daughter.
I did nothing to hurt my patients, he said.
However, Orens said that one of his patients was hospitalized, treated and released four hours later from an infection,
which he claimed was not related to Lyme disease.
Dr. Raymond Dattweiler, who is affiliated with Stony Brook Hospital on Long Island, N.Y., stands his ground that
three weeks of treatment cures Lyme.
My success record has been outstanding. I ve treated thousands of Lyme patients, and I have yet to see one cured
in three weeks, Orens said in opposition.
Dattweiler has testified on behalf of insurance companies against several doctors who prescribe long-term antibiotics.
He is also an advisor to the Centers for Disease Control, National Institute of Health, and the Food and Drug Administration.
Further, Dattweiler holds a 25 percent interest in the SmithKline Beecham LYMErix vaccine, which was approved by
FDA last year.
I predict that within a year the vaccine will be taken off the approved list, Orens said, adding that he has seen
several patients who developed Lyme symptoms and chronic arthritis after receiving the vaccine.
I have never once, ever, referred a patient to the Lyme vaccine, he said.
But even if charges are dropped, such a complaint can ruin a doctor s reputation. Orens spent 40 years in practice,
the last three of which consisted of about 60 percent Lyme patients. He graduated in the top third of his medical
class at UCLA. For 20 years, he was the assistant professor of medicine at Cornell University School of Medicine.
Now, with having to pay two different attorneys fees of $900 per hour, Orens fears he will lose everything that
he and his wife have worked for the past 46 years.
I have pledged myself to undo this wrong. I was railroaded in a kangaroo court, said Orens, adding that he plans
to appeal the court s decision.
Laboratories popular for Lyme tests like IGeneX in Palo Alto, Calif., do not escape the scrutiny either. Last year,
the lab was investigated twice by the California Department of Health Services and once by New York health officials.
The Centers for Disease Control
and Prevention recorded 11,603 cases of Lyme disease nationwide in 1995 (the most recent statistics). Of those
cases, Pennsylvania and seven other Northeastern states accounted for 92 percent. In the past decade, the number
of Lyme cases reported in this state has increased to epidemic levels. Since last year, the commonwealth has moved
up a notch from ranking third to second in the nation for Lyme disease.
Ticked Off Fed Up
A new Gettysburg Lyme Disease Support
Group was birthed by several Lyme victims, family members and their advocates having to cope with the many complex
symptoms that the disease can present. The group meets monthly at the Motts home in Gettysburg. To learn more about
this complicated disease or to share with other Lyme victims, call Lovette Mott at 334-6339.
Research and relief
Cholestyramine (CSM) is an FDA-approved
medication used to lower elevated levels of cholesterol. It has been used safely in millions of people who have
taken the medication for extended periods of time.
Now, Dr. Ritchie Shoemaker of Pocomoake, Md., is prescribing CSM to Lyme patients. He just received a $300,000
grant from Bristol-Myers Squibb, a pharmaceutical company, for a three-part study. The first part of the study
has already been completed.[Correction]
Under an FDA exemption, the drug is being used to treat chronic, neurotoxin-mediated illnesses such as Lyme disease.
In Lyme disease, when an antibiotic hits the spirochete, the bacteria explodes and toxins are released in the brain
and central nervous system, Lovette Mott explained. His theory is that toxins are what is causing some of our symptoms.
Provided there is no re-exposure, the treatment will remove all toxins over time. Most patients are symptom-free
in two weeks, but depending on the amount of toxins in a person s body, it may take longer.
About 22 Lyme victims and family members from Adams and Franklin counties are participating in part two of the
study. Rebecca Peake and Lovette Mott are just two from this area who will be taking CSM as part of their treatment.
Shoemaker has used CSM in the past to treat his own father, who was also diagnosed with Lyme disease.
The Motts hope that politicians
at high levels will get involved and feel there is a need for a senatorial hearing on Lyme disease. They have written
to as many as seven senators in Pennsylvania, Maryland and New York.
U.S. Sen. Rick Santorum and U.S. Rep. Joseph Pitts introduced the Lyme Disease Initiative of 1999. The bill is
a five-year, $125 million blueprint for attacking the disease on all fronts.
The program is designed to make the development of better detection tests for the disease a high priority; to foster
better coordination between scattered programs within the federal government through a joint agency plan of action;
and to protect workers and visitors at federally owned lands in endemic areas through a system of periodic Lyme
disease risk assessments.
Rest assured, as the 106th Congress continues, I will work to enact legislation that aims at helping the victims
of Lyme disease, wrote Santorum in a letter addressed to the Motts.
State Rep. Stephen Maitland, R-Cumberland Township, also wrote a letter on behalf of the Smiths and forwarded it
to the the state Department of Health.
Lyme disease is a very serious problem for people that have it because it is hard to detect and hard to treat,
In addition, letters were sent to 20-20, Dateline, 60 Minutes, and Gov. Tom Ridge asking him to contact New York
Gov. George Pataki to reinstate licenses.
We need some major movie star or public figure with Lyme disease to come forward or they re just going to continue
to pick off our doctors and pretend that there s no problem, Vicki Karam Smith said.
Circle of hope
More than 200 people are expected
to attend a Lyme Disease Awareness Rally on Saturday, April 8 from 1-4 p.m. on Lincoln Square in front of the Gettysburg
Hotel. Orens is expected to deliver a speech. The public is invited to attend.
Following the rally, a physician panel discussion and informational meeting will take place at The Gettysburg Hospital
Community Room from 4-5:30 p.m. Burrascano will be among those who will speak as well as Nick Harris, director
of IGeneX Lab in California; and Dr. Harold Smith, emergency room physician for Saint Joseph and Geisenger hospitals.
Santorum and Maitland will be attending. U.S. Rep. Bill Goodling (R-19) and Ridge have also been invited.
The event is a prelude to a larger rally that will be held in Washington, D.C., on May 3.