Overall, I am very pleased with the article, but I wish that the reporter had at least mentioned Victoria's co-infections and the importance of multiple tick-borne co-infections in the sickest patients. Some of the information that I mentioned to him, that he attributes to Kenneth Liegner, I had actually found out in my own research. Still he did give a great plug for the "Forum on Lyme Disease" You can find the press link for the forum at: http://flash.lymenet.org/ubb/ultimatebb.php/topic/8/2726.
By Paul Crossman Published: Wednesday, May 18, 2011 12:06 PM EDT NEW LEBANON -- It's no question that Lyme disease is an issue in Columbia County, where main attractions include pristine woods and fields for hiking, camping and mountain biking. Studies show that this county has one of the highest concentrations in the country for Lyme disease. Cases have appeared all over the county year after year and while some are diagnosed and treated with success, others -- like that of 14-year-old Victoria Lehtonen in New Lebanon -- are not.
Victoria's mother, Karla, has helped her still-recovering daughter through the disease for more than two years now and hopes that sharing their story will encourage a more open dialogue on treatment options for Lyme disease between both doctors and patients around here and throughout the country.
Columbia County Public Health Director Nancy Winch said that although the reported cases of Lyme disease were down slightly in 2010 -- 210 compared to 357 in 2009 -- the area still has the highest rate in New York state.
``[Lyme disease] is a big problem in Columbia County,'' she said. ``The best thing to do is prevent it. Tuck your pants into your socks, and check yourself when you come back inside. If you do find a tick, carefully remove it and watch for any symptoms.''
Karla first suspected the all-too-common disease might be affecting her daughter even before several of Victoria's friends were diagnosed positive with Lyme. She had her daughter tested not once, but several times and each test came back negative. Doctor after doctor, she said, told her that Lyme disease was not a possibility if the results of the tests came back negative.
``[Victoria] became suddenly and dramatically ill,'' she said. ``She went from being a healthy and active child to sleeping 14 to 15 hours a day, running low grade fevers, developing light sensitivity and having terrible headaches.''
A few weeks later, she said, Victoria was having trouble breathing.
After seeing her daughter's symptoms progress, she began doing extensive research on her own. Karla, who was working on her nursing degree at the time, was adamant with her local doctor that it could be Lyme and had him put her daughter on 10 days of antibiotics.
``I want you to treat her for Lyme disease, not wait for the results of the test,'' Karla told her local physician.
She said that once her daughter was put on medication there was some improvement, including a decrease in the headaches and joint pain, although there was still exhaustion and now an added case of insomnia.
The disease also began to affect other areas of Victoria's life. A sixth-grade geography star, she began having trouble remembering enough of the chapter she had just read to answer the take-home questions she had been given to make up for the school she was missing -- seven weeks in the first year and now almost two years in total.
``She couldn't remember anything she had read,'' said Karla. ``Even small things would send her into tears.''
Victoria's illness began in April 2009 and by that June, Karla said there were some small improvements, but her daughter was definitely still not well.
Local doctors continued to do tests and every time, the tests came back negative. ``She tested negative for every tick borne illness,'' she said. ``There were three sets of negative tests.''
Doctors from various practices and hospitals in the area told her time and time again that her daughter could not have Lyme disease if the tests came back negative, but after even more research, Karla still thought they might be wrong.
``With all her friends diagnosed, it didn't take a genius to conclude that there was a good chance she had Lyme disease too,'' she said.
When her first year of nursing school ended, Karla devoted even more time to researching the disease and discovered something that none of her doctors had told her. With Seronegative Lyme disease, it was possible to continually return negative test results and still have the disease.
She also found out that this was even more likely to be the result if the patient had first been treated with an insufficient amount of antibiotics. Patients who seemed to get better, then relapse, were more likely to return negative tests results.
After reading a list of 20 symptoms by a doctor in Connecticut who had treated more than 16,000 people with Lyme disease, Karla realized that her daughter's symptoms matched 16 out of the 20. She decided that she wasn't going to take no for an answer anymore.
``At least 20 percent of people test negative repeatedly,'' she said. ``I became determined I had to get her treated.''
At this point, Victoria had been diagnosed with Post Illness Fatigue Syndrome by a disease specialist, but from her observations of her daughter, it seemed like there was still an active disease in her system.
``I didn't think that was true,'' said Karla. ``I thought my daughter still had an active infection.''
Victoria's local doctor agreed to give her antibiotics for one month, but told Karla that if she wanted her daughter to be on medication for longer than that, she would have to find another doctor.
``I knew he wasn't going to treat her until she was well,'' she said.
The reason for the local doctor's reticence to continue medication, Karla explained, was based on the Infectious Diseases Society of America's (IDSA) guidelines on how to treat the disease. IDSA guidelines -- which are widely referred to by physicians throughout the United States -- suggest treatment only in the presence of certain symptoms and advise not to continue treatment more than four weeks, even if symptoms remain.
It was around this point that -- while searching for an expert to continue treatment -- she found Dr. Kenneth Liegner in Westchester County, who agreed to redo the tests, as well as perform more detailed tests on Victoria. After several negatives, two additional tests came back positive for Lyme disease.
Liegner was also the first doctor to mention to Karla the International Lyme and Associated Diseases Society (ILADS), which has differing views about the diagnosis and treatment of Lyme disease than the IDSA.
ILADS, he told her, suggests that many of the tests for Lyme Disease would send back a large percentage of false negatives (like Victoria's). Doctors should treat based on their professional diagnosis and continued testing, rather than quitting after just one test, which in some cases can have almost a 50 percent rate of false negatives.
Karla said he also explained to her that ILADS felt this should be taken a step further -- treat the disease until the treating doctor thought it was gone and not just for an ``arbitrary'' amount of time like four or five weeks.
While doctors who support ILADS only make up about 10 percent of those offering treatment, their numbers are growing and they have offered another set of guidelines which suggest that symptoms of Lyme disease may be more subjective than objective and should be treated as such.
``I've done a lot of research and I'm trying to understand what's going on ... why did my doctors believe in unreliable tests?'' Karla asked herself.
More than two years after her initial diagnosis and with the help of Dr. Liegner and others like him willing to use long-term treatments, Karla said her daughter is slowly but surely showing signs of improvement. While she still hasn't been able to return to school, Karla said Victoria's headaches are getting better, there are less aches and pains and her energy is improving.
Victoria herself said that she has felt a definite improvement since the medication has been administered and is happy to once again be able to go outside, see friends and on especially good days, even go horseback riding for short periods of time. With the improvements, her mood is hopeful.
``Next winter, I'd love to go skiing,'' she said. ``I used to go all the time and I haven't been able to go in two years.''
Karla is happy with these results, but less than pleased with the amount of time it took her daughter to be diagnosed and effectively treated. She is worried that a large portion of those with Lyme disease -- especially in a hot spot like Columbia County -- might be going undiagnosed or being tested only to return a false negative diagnosis.
Proponents of the IDSA guidelines argue that there really is no ``chronic Lyme'' disease and because of this, long-term antibiotics aren't helpful. What people might misconstrue as chronic Lyme, according to the IDSA, is more likely chronic fatigue or post-infection syndrome, which is what Victoria was diagnosed with.
Arguments for use of the short-term four- or five-week cycle of antibiotics like Doxycycline -- one of the most common prescriptions -- is that there is no scientific evidence that symptoms which persist after the treatment are in fact caused by Lyme disease.
``IDSA's goal is to ensure that people with Lyme disease get the best possible care and that the treatment that IDSA recommends in our guidelines is safe, effective and well-supported by the medical evidence,'' said IDSA Public Affairs Officer John Heys. ``Long-term antibiotic treatment (for months or years) is dangerous; IDSA is concerned that this therapy increases the risk of creating drug-resistant `superbugs' and can lead to life-threatening infections for patients. This is a major problem, both for individual patients and for public health.
``Another key point is that the symptoms of Lyme disease mimic many other diseases and that a misdiagnosis of Lyme disease may cause a doctor to overlook other, potentially treatable conditions,'' he added.
Proponents of ILADS, like Liegner, adamantly disagree, saying that stopping treatment when it is likely patients could relapse or not treating them at all because certain tests came back negative is not only the wrong approach to take toward Lyme disease, but medically improper.
``The IDSA guidelines are out of touch with the biologic reality of the disease and the way patients experience the disease,'' he told the Courier. ``I believe [the ILADS] guidelines are much more realistic in keeping with the complexity of Lyme.''
He also said that in his opinion, the IDSA guidelines were never meant to be used as the sole basis of diagnosing the disease and that diagnosing each individual from a clinical point of view should play a larger part in deciding the correct course of treatment for a patient.
``In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease,'' he stated in a letter to the Institute of Medicine. ``This has resulted in needless suffering of many individuals who deteriorate and sometimes die for lack of timely applications of treatment or denial of treatment beyond some arbitrary duration.''
This large divide in the proper diagnosis and treatment of Lyme disease by medical professionals is the reason Karla, and others like her around the country, are pushing for forums of open dialogue and discussion between doctors to help raise understanding on the issue.
One such forum, which Karla hopes will help open up a discussion on Lyme disease, will be held 7 p.m. Tuesday, May 24 in the McDonnell Theatre of the Daniel Arts Center at Simon's Rock College in Great Barrington, Massachusetts. The forum is sponsored by Fairview Hospital and Berkshire Health Systems Inc. and will feature pediatrician Kari Bovenzi, MD; Barry Elson, MD, the medical director of Northampton Wellness; Dr. Liegner, who also co-authored ``Coping With Lyme Disease''; and Tom Moorcroft, DO, who is a practitioner of holistic medicine in Connecticut.
The forum is open to anyone who wishes to attend and will include a dialogue between the panelists, followed by a question and answer period.
``Almost everyone in Columbia County knows someone who's had Lyme disease,'' said Karla. ``I just want to prompt an open minded discussion of the issues.''
For more information on ILADS and their guidelines, visit www.ilads.org. For more information on IDSA and their guidelines, visit www.idsociety.org. Posted by joshzz (Member # 23526) on :
This is so sad but it is the story we have heard again, and again and again. It breaks my heart that this just keeps happening and that so many health care professionals are callous. If it was their own child I am certain they would not abide by CDC regs. Having been in this since the early nineties, it is so sad that this is allowed to continue and both political parties are equally guilty for allowing the insurance industry to dictate protocol.