Jemsek Specialty Clinic

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June 13, 2010
Jemsek Specialty Clinic Newsletter - June 2010

As a former employee of a major airline, Lynette Funk traveled far and wide. The trips, by and large, went without incident - a touch of the flu here, maybe a stomach virus there, but nothing of major significance.

Until a simple family camping trip in Wilkesboro, NC, over the Labor Day holiday two years ago.

"I had seen a tick on me during the trip, but I got it off and didn't think anything else about it," Lynette recalls.

That changed a few weeks later, when the normally fit and healthy runner started feeling a numbing and tingling sensation in her legs. She wrote it off to excessive exercise, part of her three-mile a day jogging routine.

Then the numbing sensation started jumping around to different parts of her body - the arms, the neck, shoulders and chest.

"I thought it would eventually just jump off," Lynette jokes, "and leave me alone."

It didn't. Instead, the symptoms got worse, including more numbness in her feet and hands, fatigue, along with a severe loss of appetite to the point where she had dropped nearly 20 pounds.

"It got to where I wasn't able to do simple things that I used to do every day," Lynette says. "I couldn't feel the pedals when I was driving, couldn't hold a pen to write."

A trip to the doctor produced a spinal tap and ELISA test, which returned negative for Lyme disease, and an MRI that indicated brain lesions consistent with Multiple Sclerosis. With what she thought was a diagnosis in hand, Lynette tired to resume her normal schedule and get on with life. But as her symptoms worsened, she started doing some research of her own.

During a visit with her OB/GYN, she expressed her misgivings about the MS diagnosis and, crazy as she thought it sounded and despite the negative ELISA test, said she thought might have Lyme.

"When I mentioned the tick I had found on me, combined with my symptoms," Lynette recalls, "he said it didn't sound crazy at all."

The doctor started her on an oral antibiotic, but her old symptoms not only intensified, they brought along some new ones. She developed double vision due to her right eye becoming crossed, and could no longer drive a car because of her poor vision and extreme numbness in her feet. Simply climbing the stairs became a daunting task for somebody used to effortlessly jogging miles at a stretch.

"I didn't know what was wrong," Lynette says, "but I was determined to find out and beat it."

Scouring the Internet for research she came across Turn The Corner Foundation, which included information on the pioneering work Dr. Joseph Jemsek was doing with the treatment of Chronic Lyme disease. When she called to make an appointment, however, Jemsek's patient calendar was booked out for several months.

Instead, Lynette went to a Lyme literate physician in Maryland, by which time her condition had relegated her to a wheelchair and using a walker for simple mobility. The Maryland doctor interpreted two Lyme tests that Lynette had ordered and registered positive, and started her on a different regime of oral antibiotics.

By the time Lynette was able to secure an appointment with Dr. Jemsek, she had seen slight improvement. Which in this case, meant she had upgraded from a wheelchair and walker to a cane. Over the course of the ensuing months under Dr. Jemsek's care, Lynette went through cycles of oral antibiotics and, eventually, started an IV regime.

As is normal in many cases with antibiotic treatments, things became worse before the got better. But slowly, with the loving support of her husband, Shaun, things did get better. Normal tasks became almost normal again. The wheelchair and walker disappeared. Steps could be climbed. Life could be lived.

Lynette was able to return to work part time as a Website designer near the end of last year and, in February, returned to a full-time schedule.

"Lynette has such an incredibly positive attitude," Dr. Jemsek says. "There's a resolve in her spirit that can't be denied, that keeps her going and looking for how every situation can be turned into a positive."

That spirit was especially critical when her 12-year-old daughter, Anna, began developing some of the same symptoms she had experienced - severe joint pain, terrible headaches, fatigue, and difficulty with tasks that were once simple. Even more discouraging, Anna had tested positive for Lyme but, amazingly, had been told by a pediatrician that it was probably just a false reading.

"He said it almost had to be," Lynette recalls with dismay, "because everybody knows there's no Lyme in North Carolina."

Anna, like her mother, began seeing Dr. Jemsek and, like her mother, is making steady progress on cycles of oral antibiotics. Lynette and Anna both recently visited Dr. Jemsek's new office in Washington, D.C., and both continue to move forward toward renewed health with renewed optimism.

"We're blessed with tremendous support from family and friends and we're taking it one day at a time," Lynette says. "We like to remember the great example Dr. Jemsek has given us himself - never, never, never give up!"

A Special Message From Dr. Jemsek

Dear friends, family, and colleagues:

I am very proud of my wife, Kay, whose skillfully written feature story was published on the top fold of the front page of The Charlotte Observer on Mother's Day. The poignant article centers around the powerful bonds of family and faith when confronted with seemingly insurmountable circumstance and illness. It is a story about a mother's resolve, a daughter's determination, endless energy and incredible spirit.

I am equally proud of all my children: John, Joanne, James, and little Jordan, who is featured with her Mom in The Observer's story. The full article is found here.

We don't understand how this unnatural confluence of events came to happen to our family, nor do we understand how this story came to published for hundreds of thousands to read, but we humbly regard these events as God's Way, in working through Kay and Jordan, to tell a story of Faith and Perseverance that creates Hope for all of those who feel desperation or abandonment in their lives.

The lesson learned yet again is that we don't make the rules or chart the future in our lives or the lives of our loved ones, and that we don't often get answers to our questions of why and how, and that we accomplish very little working alone; so we must be willing to ask for and accept the gifts of others.

We learn again that in a world progressively turned inward in a corrosive fit of self-adulation and gratification, there still exists a quiet army of those who give unconditionally who aren't concerned with the why's and how's, but only that someone is in trouble and needs help. This experience has reopened our family's eyes to the limitless goodness we all are capable of giving.

The Website on www.caringbridge.org has been updated by our niece, Elizabeth Ballas, and contains specific references, as does the article in The Observer, about the marvelous slideshow created by the writers of the article and about how to acquire nationally acclaimed author PJ Langhoff's touching cartoon book especially made for Jordan while she was in the middle of her seven-month hospitalization in her struggle with AML.

Kay and I certainly wish to emphasize at every opportunity the comfort and skill we witnessed daily with all providers who attended to Kay and Jordan at Presbyterian Hospital.

We wish you all the best,
Dr. Joe Jemsek and Family

Patient Advocate Enhances JSC Experience

A visit to the doctor can send most of us back in time, to when we were kids and it meant hours of anxiety before we even set foot in the office. The actual visit was almost never as bad as the mental anguish and uncertainty leading up to it - unless you maybe had to get a shot - and the end result invariably made for a healthier future.

Even as grown adults, though, a trip to the doctor's office is usually preceded by days of questions and concerns. And those days can quickly add up to months if you have to travel halfway across the country, or in some cases the globe, for your appointment, where you can find yourself in uncertain territory and surrounded by unfamiliar faces.

Wouldn't it be nice if there was somebody who could walk you through the whole process, to serve as your individual tour guide, so to speak, charged with making your trip as easy and enjoyable and productive and positive as possible: Meet Elizabeth Ballas, the Jemsek Specialty Clinic's new Patient Advocate.

"We want our patients to have the very best experience they can," says Dr. Joseph Jemsek. "Part of that, certainly, is delivering the best health-restoring care we can provide. But it also means helping patients through the whole process and, just as important, listening to their suggestions on how to improve their experience."

Elizabeth's life experience has perfectly equipped her for the job of Patient Advocate and the challenges and joys it brings. In fact, some of you might already be familiar with Elizabeth through the wonderful work she has done with the patient support website, www.caringbridge.org, where she has documented the amazing journey of Dr. Jemsek's daughter, Jordan.

As a graduate of the University of Washington in Seattle, where Elizabeth received a BA in Psychology and Law, Societies & Justice, she brings a unique perspective to the clinical field and the physician/patient relationship. Elizabeth worked extensively with counseling services in Seattle through her outreach efforts with teenage girls suffering from chemical dependency and mental health disorders. She also gained valuable experience working with populations in the juvenile justice system.

While a student at the University of Washington, Elizabeth spent a year as a tour guide for the campus, an experience that has proved a tremendous asset for her role with the Jemsek Specialty Clinic. For patients traveling to D.C., Elizabeth is on hand if questions arise for traveling into the city and finding one's way around town.

"We want patients to feel as comfortable as possible, to be able to breathe easier at the end of the day," Elizabeth explains. "We want them to feel at home and help take away some of the stress."

One of the first tasks Elizabeth undertook for the JSC, in fact, was to compile a comprehensive brochure for patients. This includes listings for everything they need to know about D.C., including local restaurants, important contact numbers, and information about sites and events around town of special interest, along with helpful tips on riding the Metro and navigating the local scene.

But helping patients prepare for their trip and stay while at the Jemsek Specialty Clinic is just one side of Elizabeth's responsibilities. Her other focus remains centered on acting as a critical link between patients and the clinic.

"I want to empower patients by providing them with as many resources and tools as possible to help them understand the services the clinic provides," Elizabeth says.

That mission extends beyond their visit to the JSC, to include providing follow-up information on available support groups for patients and their families, along with continued informational help relevant to their treatment.

More than anything, however, it also includes listening and learning from patients, to better deliver the services and assistance they need.

"I'm always looking for feedback from patients on what they think could be improved, or what could have been done to make their experience better," Elizabeth says. "The goal is always to take the feedback and put it into action that enhances the relationship between the patient and the clinic."

Interesting fact about Elizabeth, which you probably don't know: After graduating from the University of Washington, she spent four months living in Florence, Italy, and backpacking around Europe.

IDSA Review Panel Results Called Highly Suspect

In discouraging news that once again dismayed and angered hundreds of thousands patients suffering from symptoms associated with Chronic Lyme disease, the Infectious Diseases Society of America's Lyme Disease Review Panel last month reaffirmed its highly controversial 2006 treatment guidelines.

The panel, which had been ordered to review the guidelines as part of antitrust lawsuit brought by Connecticut Attorney General Richard Blumenthal, failed to make a single amendment or change to its own guidelines that effectively prohibit long-term antibiotic treatment of Lyme and provide insurance companies cover for denying claims of the same.

"It is a sad day for all patients when medical experts turn their backs on medical research when making treatment recommendations," said Monte Skall, executive director of the National Capital Lyme and Tick-Borne Disease Association.

Indeed, in reaffirming the IDSA's controversial 2006 Lyme guidelines, the Review Panel seemingly ignored the large body of research that has found prolonged antibiotic therapy to be effective. In fact, the IDSA Review Panel could not point to a single study that supported its recommendation that antibiotic therapy should be withheld from patients who continue to be sick.

Attorney General Blumenthal's landmark action against the IDSA represented the first ever lawsuit against a professional medical society for guideline abuse. The Attorney General had argued the lawsuit was critical after an investigation found serious flaws in the IDSA's process for writing its Lyme disease guidelines, including myriad undisclosed conflicts of interest held by association members who crafted them, which compromised the delivery of healthcare to patients.

The IDSA Lyme Disease Review Panel was created as part of a settlement with the Connecticut Attorney General. As part of the settlement, IDSA members who wrote the controversial 2006 Lyme guidelines were strictly prohibited from further guidelines involvement on this subject. Nonetheless, in January the IDSA Review Panel was cited by Blumenthal for voting procedure violations that favored the status quo at the IDSA and which were in conflict with the lawsuit settlement's terms of agreement.

While the Review Panel redid the vote of all the recommendations it was reviewing, members refused to redo a crucial split vote on whether positive lab tests were required for diagnosis. The CDC has long advised, it should be noted, that Lyme disease should be diagnosed on clinical grounds and not unreliable laboratory tests, which are inaccurate 50% of the time.

After being cited by the Attorney General for its voting process, the Review Panel offered no explanation for its actions, tendered an apology, pledged to remain in compliance, and then turned around and endorsed the IDSA's controversial 2006 guidelines without a single amendment or change.

The decision was almost immediately criticized by scores of physicians who pronounced the results "highly suspect."

"Significant evidence, clinical experience, and expert opinion were presented to the specially appointed IDSA panel to demonstrate that carefully administered long-term antibiotic treatment was beneficial in providing significant relief to many victims of tick-borne disease," states NatCapLyme's response to the IDSA announcement. "The panel erred in turning its back on these impressive submissions in favor of continued reliance on studies and conclusions that have been soundly criticized for their own shortcomings and biases.

"There is no justification for relying on flawed science for continuing its recommended guidelines and arming insurance companies to deny health benefits to insured Lyme victims. If the panel was not prepared to recognize the studies that support longer courses of antibiotic treatment for chronic sufferers, it should have included a call for continued scientific study of this topic among its suggestions. It is time for the IDSA doctors to stop defending their reputations and get back to the work of helping sick people to get well."

The Connecticut Attorney General is currently reviewing whether the IDSA Review Panel's vote on a positive lab test requirement complied with the lawsuit's settlement agreement.

Meanwhile, the effects of Lyme disease continue to ravage the country with nearly 30,000 reported new cases in 2008, according to the CDC. And that's just the tip of a very deep and dangerous iceberg. The CDC for years has said the number of new cases of Lyme is likely at least ten times larger than the annual reports.

"It is our hope," said NatCapLyme's Skall, "that treating clinicians will continue to exercise good judgment and treat patients based on their experience of what works for them in the clinical environment. Rote obedience to a treatment guideline based on flawed studies is not good medicine."