New Lyme Disease Guidelines Spark Showdown

[Franky]

E.J. MUNDELL
c. 2006 HealthDay News

Battle lines have been drawn over new clinical guidelines on spotting and treating Lyme disease.

Depending on whom you talk to, the new recommendations from the Infectious Disease Society of America are the "best that science has to offer" on the illness, or a medical "travesty" that will lead to the suffering and even death of those affected by the tick-borne disease.

The former view is held by Dr. Gary Wormser, the infectious disease specialist who chaired the panel that drew up the new guidelines, which are published in the November issue of Clinical Infectious Diseases.

Specifically, the updated Infectious Disease Society of America recommendations -- the first since 2001 -- state that "95 percent of cases of Lyme disease are cured with 10 to 28 days of oral antibiotics." They also state that there is currently no credible scientific evidence of infection with Borrelia burgdorferi -- the tick-bone bacteria which causes the painful illness -- extending much past this period in patients who are treated soon after diagnosis.

That runs counter to the notion, held by many, that longer-term, "chronic" Lyme disease exists as a clinical condition.

The guidelines also strongly discourage the use of antibiotics in patients beyond those 30 days, since long-term antibiotic treatment comes with its own medical risks.

While there's no rule that physicians must follow the Infectious Disease Society of America's recommendations when treating Lyme disease, insurance companies often base their treatment coverage on these types of guidelines. State medical boards might also consult the recommendations when reviewing alleged malpractice cases.

All this means that "patients are now contacting us in droves all the time about their inability to get treatment," says Pat Smith, president of the New Jersey-based Lyme Disease Association, which represents 24 patient advocacy groups across the United States.

Smith and other patient advocates are vociferous in their opposition to the Infectious Disease Society of America guidelines. They argue that the recommendations are based on an incomplete, biased review of the science and fly in the face of observed clinical outcomes.

"I will tell you that, from my experiences with tens of thousands of people from across the country, these chronic patients are helped by antibiotics," says Smith, who has two daughters affected by Lyme disease. "If they are helped by antibiotics, they should be allowed to have them."

Instead, she says, insurance companies are citing the recommendations as they cut off many patients' access to treatment.

Dr. Raphael Stricker is a San Francisco Lyme disease specialist and president of the International Lyme and Associated Diseases Society: the largest medical organization devoted to Lyme illnesses. His group recently sent a letter to Clinical Infectious Diseases, asking that the journal retract the Infectious Disease Society of America guidelines.

Stricker says he routinely ignores the guidelines in his own practice. But he adds that he is able to do so because California has laws in place that protect physicians "who want to treat according to their own best judgment." Most states do not have such laws.

"So, if I were practicing in another state that did not have this protection, I would be very scared right now because of the Infectious Disease Society of America guidelines -- I might be brought up before the board," Stricker says. "I think the guidelines are definitely having a chilling effect in the rest of the country."

Smith says she's also heard "from several people whose insurance companies have cut them off (from treatment) without anything but pointing to the new guidelines."

But Wormser says his group based the new recommendations on solid evidence. "We looked at almost all the science that we could find on the subject," says Wormser, who is chief of infectious disease at New York Medical College, in Valhalla, N.Y. "In the guidelines, we actually cite over 400 studies."

He says the evidence from all this data was clear: There is no good evidence that Borellia bacterial infection persists past the first few weeks of treatment. That means that the risk to patients of long-term antibiotic therapy is unwarranted.

He also points to studies which show that people with a prior Lyme infection are no more likely than others to develop long-term problems.

Wormser stresses that he and his colleagues do not deny that the symptoms patients complain of are real. However, instead of labeling these symptoms "chronic Lyme disease," Wormser prefers "post-Lyme syndrome." The distinction is an important one: similar language has long been used to describe individuals who were once stricken with polio and who go on to develop a constellation of long-term symptoms called "post-polio syndrome," for example.

Wormser says intensive research is needed to determine what causes debilitating, long-term symptoms in patients with no trace of Borrelia in their cells. Right now, he says, doctors don't even agree on what symptoms characterize long-term illness: "How do you know when a person has it? What definition is there for it?"

According to Wormser, long-term sufferers complain of a wide variety of symptoms, many of which can be caused by other ailments. "So, if you don't rely on some other test method -- just on your own (physician) intuition -- you can't possibly diagnose it correctly," he says.

Stricker takes another view, however.

"I have over 900 Lyme patients, and there is actually a lot of consistency in the type of symptoms patients have," he says. "So, my response to Dr. Wormser is that, when you have a lot of clinical experience treating patients, you see patterns and you understand that things are treatable."

Stricker also contends that the Infectious Disease Society of America panel did not, as Wormser claims, survey "all" the literature on Lyme disease. He says that, since the disease first emerged 30 years ago, more than 18,000 papers have been published on the illness. "He just looked at all the studies that he considered significant -- that's about 2 percent of the literature," Stricker says.

The Infectious Disease Society of America guidelines do include one important disclaimer: A note that the recommendations "are not intended to supplant physician judgment with respect to particular patients in special clinical situations."

But critics called the disclaimer little more than window-dressing.

"That's not the way the guidelines are going to be interpreted," says Tom Forschner, executive director of the Lyme Disease Foundation, another patient advocacy group. "Docs and insurance companies are going to look at (certain treatments) and say, 'Well, that violates the Infectious Disease Society of America guidelines, therefore you are not going to be reimbursed or treated.' And that's where patients will suffer."

A Web search on Wormser quickly turns up scathing epithets from detractors who call him a "mass murderer" and "Dr. Death." Wormser says he's been puzzled by the animosity the guidelines have generated.

"We're not trying to do anything evil, we're actually very concerned about these patients' symptoms," he says. "We really encourage people to do further studies to find out what's causing this."

But Stricker believes the Infectious Disease Society of America panel ignored the collected evidence and has now boxed itself into a kind of intellectual corner.

"At this point, it's really just politics," he says. "Politicians don't want to admit that they are wrong, and these guys don't want to admit that they are wrong, either."
Published November 14, 2006

[jovie]

"At this point, it's really just politics," he says. "Politicians don't want to admit that they are wrong, and these guys don't want to admit that they are wrong, either."

This is what is so wrong in the world and one of the major reasons things just don't get done.

[skittter]

Boy, This really gets my blood boiling!!!
Apparently the CDC also maintains this position.
Instead of recognizing Lyme Disease as a chronic illness (long lasting) and assuming the obligation for additional research, IDSA and the CDC et al are stating.. if it can’t be cured, it does not exsist and now according to Dr. Wormser’s IDSA guidelines.. if symptoms persist longer than 14-28 days it is classified as this pseudo illness Post Lyme Syndrome.

What kind of asinine assessment is that!!!!* To the thousands of Lyme sufferers, this is no less than genocide.* God Help Us!!!!

More info concerning the controversy....

Although there is no doubt that Lyme disease exists, and most clinicians agree on the treatment of early Lyme disease, there is considerable controversy as to the prevalence of the disease, the proper procedure for diagnosis and treatment of later stages, and the likelihood of a chronic, antibiotic-resistant Lyme infection. On one side are those who believe that Lyme disease is relatively rare, easily diagnosed with available blood tests, and easily treated with two to four weeks of antibiotics. On the other side are those who believe that Lyme disease is under-diagnosed, that available blood tests are unreliable, and that extended antibiotic treatment is often necessary. The majority of public health agencies such as the U.S. Centers for Disease Control maintain the former position, and recommend adherence to the* IDSA guidelines. . While this narrower position is sometimes described as the "mainstream" view of Lyme disease, published studies involving non-randomized surveys of physicians in* areas found physicians evenly split in their views, with the majority recognizing* Lyme disease, and roughly half prescribing
extended courses of antibiotics for chronic Lyme disease.

Concern about false positive . Many physicians with a conservative view of Lyme disease believe it is over-diagnosed and over-treated. One of the most widely cited studies from critics of Lyme Disease was written by Allan Steere. His study, published in JAMA concluded that 57% of patients diagnosed with Chronic Lyme in an endemic area did not actually have the disease. Critics have responded with the following arguments:
45% of those considered "misdiagnosed" in the study received positive results from another laboratory, and negative results from the authors' laboratory.
However there was no independent evaluation, and no reason to assume that the authors' laboratory was superior. In a separate study funded by the NIH, the laboratory used by Allan Steere was sent definite Lyme Disease serology in a blinded fashion in an attempt to discover the reliability of testing at major academic centers. The study concluded that the rate of true positives for this laboratory was significanly less than 100 percenent.
The authors failed to consider the phenomenon of seronegative Lyme disease (false positive).
Rather than consider the possibility of persistent infection , the authors considered treatment failure to be evidence of misdiagnosis, i.e. patients could not possibly have Lyme if they were not cured by a standard course of antibiotics even though the authors had previously published that treatment failures were common.
However, despite this fact, the authors concluded that all patients with Lyme respond to treatment - another example of circular reasoning.
The authors excluded patients from a diagnosis of Lyme disease if they had psychiatric symptoms, despite the fact that Lyme can cause such symptoms.

....skit

[Franky]

wow skit great info there. Jezzz makes you think even if they declare morgellons a true disease, I can already see the fights that opposing sides will have. To many egos floating around and closed minds.

[skittter]

Originally Posted by Franky

wow skit great info there. Jezzz makes you think even if they declare morgellons a true disease, I can already see the fights that opposing sides will have. To many egos floating around and closed minds.

You are exactly right Franky and that is a very good point. It makes one question the motives of those who are here to protect us.

[cd3girls]

I totally agree with the disappointing trend....seems to be what all of us have run into at one point or another.

On a more positive note tho, I thought I would share a link my stepmom sent to me. Its a website for a Doctor who is trying to bring attention to Morgellons, lyme etc..... He has provided valid background info, and links to other websites (need to find a local DR?). Perhaps you live in his area and want to see him?

Check it out: http://familymedgaithersburg.com:80/

At a minimum - the DR provides a telephone number and an email address. Maybe some of you would like to send a note to encourage him? Let him know that we appreciate his support and efforts? There are too few of them out there who are backing us up - I think we need to do the same back and keep them motivated. I know I will be sending him a note!!

[jovie]

cd3girls great link! Maybe franky or somebody could do a little interview with him. I would love him to explain why so many Docs are very quick to disspell any new type of illness.

[skittter]

Originally Posted by cd3girls

I totally agree with the disappointing trend....seems to be what all of us have run into at one point or another.

On a more positive note tho, I thought I would share a link my stepmom sent to me.* Its a website for a Doctor who is trying to bring attention to Morgellons, lyme etc.....* * He has provided valid background info, and links to other websites (need to find a local DR?).* *Perhaps you live in his area and want to see him?

Check it out:* * *http://familymedgaithersburg.com:80/

At a minimum - the DR provides a telephone number and an email address.* Maybe some of you would like to send a note to encourage him?* Let him know that we appreciate his support and efforts?* There are too few of them out there who are* backing us up - I think we need to do the same back and keep them motivated.* I know I will be sending him a note!!

Hello cd3 - Thank you for the information. It is refreshing to know there are good compassionate doctors out there. I hate to appear so negative but I know it is going to be an uphill battle for all of us and it is so frustrating to fight all the bureaucratic bs.
I was going to check out a doctor in my area but the doctor referral page was unavailable.??
Thanks again for the link..Dr. Matthews patients are very lucky.
...skit

[Franky]

Originally Posted by jovie

cd3girls great link! Maybe franky or somebody could do a little interview with him. I would love him to explain why so many Docs are very quick to disspell any new type of illness.

I will email him, maybe he can give us some info from a docs perspective.

[cd3girls]

Originally Posted by bubba

Hi all,
Just want you to know that this is my doctor. He is very busy and getting busier by the day. I am not trying to hide his info from anyone, however I have been protecting him from certain cyber vultures. That is why I do not publicly post his info. There is one posting with his info on this site that I provided earlier, but I put him in with a few others. He is the one who told me to soak in the peroxide and salt baths that all of you are using. I added the Eco-Vie and then he suggested the saunas. Everything that I have given you to try, I have discussed with him personally. He is very busy, so he may not respond to a lot of emails. Please be gracious to him.
If you need more info, you can private message me.
Thanks.

Bubba - seems you have found the right Doctor! Two additional thoughts: