Friday, November 03, 2006 BY ANGELA STEWART Star-Ledger Staff
New guidelines that discount the existence of a chronic form of Lyme disease and discourage long-term antibiotic treatment are stirring up controversy about how best to manage the tick-borne illness.
The guidelines also recommend against combining antibiotics to treat the disease, in addition to giving a thumbs-down to experimental or alternative therapies -- things like hyperbaric oxygen therapy and vitamins/nutritional supplements.
Members of the Infectious Diseases Society of America, which wrote the new guidelines, contend they are based on the best scientific evidence available. The Alexandria, Va.-based society represents physicians, scientists and other health care professionals. The guidelines were published in the Oct. 2 issue of the Journal of Clinical Infectious Diseases.
"These guidelines are based on more than 25 years of (clinical) experience and scientific studies ... unproven and experimental therapies are not endorsed," said Eugene D. Shapiro, a professor at Yale University School of Medicine who helped draft the guidelines.
But some Lyme patients and advocacy groups, as well as doctors, said those suffering from the disease will be harmed.
"They remind me of the Ten Commandments. They are full of 'Thou Shalt Nots,'" said Jeannine Phillips, 56, of East Brunswick, who heads LymeQuest, a local support and advocacy group.
The Jackson-based Lyme Disease Association Inc., a national patient education and advocacy organization, has started a petition drive on its Web site (www.LymeDiseaseAssociation.org) to protest the guidelines. More than 9,000 signatures have been collected, as have many personal stories.
For instance, there are reports from other states of pharmacists refusing to fill antibiotic prescriptions for patients, Phillips said.
The standard course of antibiotic treatment for Lyme is three to four weeks, but some patients end up being treated well beyond that, in some cases for months or years.
"One person had their insurance company deny treatment because the guidelines do not recognize Lyme can be a chronic disease," said Pat Smith, who heads the association. "These (guidelines) are absolutely devastating."
Lyme disease is transmitted by a tick bite and is sometimes characterized by a round, red lesion with a bull's-eye appearance. People who are bitten may experience joint pain and flu-like symptoms, such as muscle aches, fever and fatigue.
If left untreated, the bacteria can cause heart palpitations, arthritis, severe joint pain and swelling, short-term memory loss and chronic neurological problems.
The number of Lyme disease cases in New Jersey surpassed 3,000 for the first time last year, making the Garden State third in the nation for reported Lyme cases.
Shapiro, a professor of pediatrics, epidemiology and investigative medicine at Yale, said more than 95 percent of those who get Lyme respond to a short course of antibiotic treatment.
"If there was evidence that prolonged antibiotic treatment was beneficial, I would jump right on the bandwagon," he said.
If kept on antibiotic therapy too long, patients developing antibiotic resistance or even infection from intravenous lines, he said.
Shapiro said the new guidelines, which address treatment at different stages of the disease, provide "plenty of room for clinical judgment," are meant to assist doctors, not dictate to them.
Because Lyme symptoms can be very nonspecific and in some cases mimic other diseases, such as multiple sclerosis, diagnosis can be difficult. This is especially true in cases that lack the identifying rash or for which there is no positive blood test.
And when it comes to chronic Lyme, the new guidelines contend "there is no convincing biologic evidence" to support its existence in patients who have been appropriately treated with recommended antibiotic therapy.
Officials at Horizon Blue Cross Blue Shield of New Jersey called it "rare" that antibiotic therapy -- either orally or intravenously -- would be necessary for more than four weeks.
"This is the period of coverage defined in our policy," said Stanley E. Harris, Horizon's senior medical director.
That may be so, but expect patient suffering to increase, as it will be hard to find doctors willing to treat them, others contend.
"If a disease can be so controversial, how can any guidelines be rigid or accepted as the standard of care?" asked Robert C. Bransfield, a Red Bank psychiatrist who sees many late-state patients suffering from depression, fatigue and cognitive impairment. "They are a step backward."
Other doctors, however, say they welcome the additional direction the guidelines provide.
"I personally think they are on the money," said Jerome Levine, chief of the Infectious Disease Division at Hackensack University Medical Center.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
I hope someone from NJ is writing a response to this?
There's lots of good stuff in the article, and then there ae some doozies by Shapiro that really should not be allowed to stand.
Quote: "One person had their insurance company deny treatment...... said Pat Smith..., these (guidelines) are absolutely devastating."
ONE PERSON? Is that really what Pat Smith said?
-------------------------------- QUOTE: Shapiro said the new guidelines, which address treatment at different stages of the disease, provide "plenty of room for clinical judgment," are meant to assist doctors, not dictate to them.
OH? How misleading!! ACTUALLY THE GUIDELINES SPECIFICALLY STATE THAT CLINICAL JUDGEMENT IS NOT TO BE ALLOWED IN DIAGNOSIS. Shame on Dr. Shapiro!!
-------------------- QUOTE: " If kept on antibiotic therapy too long, patients developing antibiotic resistance or even infection from intravenous lines, he said."
NO. Lyme patients don't develop antibiotic resistance. Another distortion.
Maybe he is referring to a more general danger of abx resistance bugs? Then maybe he can put in better context why long term abx's are defensible for teenage acne, but not to treat a dehabiliting sometimes fatal illness?
And yes, sometimes people get serious infecions from IV lines. And sometimes people get seriously side-affects from chemotherapy- my husband sure did.
Does that mean DR's should not use any medications with harmful side-affects, even if that treatment is the only available tx, and the only possibility of restoring health or saving a life?
Of course not. How absurd.
Any letter-writers out there? Nan?
Dilly
[ 03. November 2006, 04:41 PM: Message edited by: sometimesdilly ]
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
That quote from BC/BS of NJ makes me sweat - they're our carrier as of 9/1. Wonder when they're going to question the continuous abx we've been on since then. At least my Adoxa could, theoretically, be for my "acne", but the azithromycin for all three of us?
I'll just keep praying...
-------------------- Getting older is when we would rather not have a good time than have to get over it. - Oscar Wilde Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006
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posted
This is the letter I Sent today. I hope it does justice to the people on this board who I believe helped me so, so much.
November 3, 2006
Dear Ms. Angela Stewart,
First and foremost I would like to thank you for bringing attention to new newly published CDC guidelines regarding Lyme Disease treatment. These so-called new guidelines are so archaic in their approach to treating Lyme Disease, that one has to wonder what is really motivating the CDC and Infectious Disease Society of America. This disease is the second fastest growing infectious disease in the United States, yet it lacks government funding for research and education. Why is this disease being ignored????
There have been many published articles to support the fact that only a small percentage of people and even a smaller percentage of children get the typical "bull's-eye" rash. Also, the CDC admits that the blood tests used by the medical community to "diagnose" Lyme Disease were initially developed for surveillance purposes, not for diagnosis. To refuse treatment for individuals who exhibit all or any signs of Lyme Disease is inhumane. One point that is universally agreed upon is that delaying treatment leads to a more chronic and harder to treat infection.
New Jersey is a Lyme endemic area, as is most of the northeast. If the medical community and the infectious disease doctors follow these new guidelines, it will be devastating to those who are currently diagnosed and to the thousands and thousands of people who will be falsely misdiagnosed in the future.
Ask around your community and I bet almost everyone you talk with has a family member with Lyme or knows of countless people who have the disease.
My daughter was refused treatment by an infectious disease doctor at Jersey Shore Medical Center and at Robert Wood Johnson Pediatric Emergency in January 2006. She exhibited weakness, migraines, muscle and joint pain, vertigo, nausea, loss of vision, seizures, chest pain, shortness of breath and had a history of a tick attachment. However, because she lacked the "bull's eye" rash, she was turned away. She missed six months of school because her infection was so severe. Had it not been for the Lyme Disease Association and their knowledge of physicians who truly understand this disease, she would not have received proper treatment leading to her recovery.
I truly cannot believe how distorted the truth has become regarding Lyme Disease and its treatment. I have never seen such a politicized health care concern.
Sincerely,
...."Lymedesign" New Jersey.
[ 03. November 2006, 12:31 PM: Message edited by: lymedesign ]
Posts: 263 | From Georgia | Registered: Feb 2006
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I just switched from Horizon BC/BS of NJ to Oxford PPO....b/c of this. Alot more money, but hopefully worth it in the end..
Posts: 263 | From Georgia | Registered: Feb 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
LymeDesign-
What a powerful letter!
It is so well written and to the point. What happened to your daughter is unbelievable-- it made me FURIOUS reading your account of it.
I suspect that most moms who read those words would react the same way. I hope they get the chance.
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
I live in MA and work in NJ. I sent the following letter this morning after a co-worker sent the article to me:
Angela,
I read your story on the new Lyme guidelines with great interest as my wife is battling the disease right now. Anyone who says that long-term antibiotic therapy is not required in some cases either does not know much about the subject or is being influenced by outside interests. I should point out that I think your piece was fair and objective - you were only reporting the facts.
If you have ever seen someone not able to sleep because of joint pain and become almost debilitated by short-term memory loss and confusion, you would know what I mean. This whole situation just leaves me scratching my head. If you treat someone with chronic Lyme with long term antibiotics, and the symptoms go away, what is wrong with that? I personally know people who have become symptom free only after years of antibiotic treatment. In our case my wife was on intravenous antibiotics for three months and oral antibiotics for three months. Having been off for about a month now, the symptoms are coming back. Most Lyme literate doctors will tell you that you should be on antibiotics until you are symptom free for at least two months.
Part of the problem with Lyme is that the testing is completely unreliable. I do not understand why, for a disease that is quickly on the rise that so significantly impacts those afflicted, why isn't there more resources put towards research to develop acceptable testing and treatment protocol? The "studies" referred to by the Infectious Disease Society are certainly not of the scale of other research.
One last thought. Why can doctors put teenagers on antibiotics for acne for years and there is no issue? Left untreated, acne will go away. Yet, Lyme will only progress and cause neurological and other severe issues, yet a 4 week treatment is enough
Posts: 19 | From massachusetts | Registered: Nov 2006
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Be sure to sign your name and give a phone number if you want it printed! (the phone # is just for verification purposes and won't be printed)
Most letters to the editor are limited to 200 words, although I can't seem to find their policy online.
Keep up the good work!
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Letter sent. November 3, 2006
First of all I want to thank you for bringing attention to this matter. Much more attention is needed and the truth needs to be uncovered.
I find many discrepancies in many areas. If you look at the IDSA's stand on Lyme disease, they insist chronic Lyme doesn't exist. Their new guidelines are posted on the CDC website. Then the CDC suggests that people with chronic diseases such as diabetes and Lyme disease get the flu shot. Well does chronic Lyme exist or doesn't it?
If you look at how dogs are treated for Lyme compared to humans you will see how much better animals are being treated. Why?
I really don't understand how the infectious disease doctors can come up with guidelines to treat a disease that most of them don't or won't treat. I called for an appointment with my local infectious disease specialist and was told, ``We don't treat lyme disease''. This was without any history. I know I am not the only one denied treatment for lyme disease by infectious disease doctors.
Due to the ignorance of most physicians or their fear to treat, I like many others, went undiagnosed for 2 1/2 years resulting in total incapacitation. I was bed bound for 18 months, unable to tie my own shoes as I couldn't remember how, had vision loss, loss of balance, hearing loss, Bell's Palsy, constant dizziness, pain and the list goes on. This was at the age of 42.
If it weren't for my Lyme Literate physician, I know I wouldn't be here to write this. And yes it took much more than their suggested short-term monotherapy. I also find it appalling that they fail to address many of the other infections associated with tick bites. No one drug will address all of these infections.
Many of us would really love to have just one antibiotic to end our needless suffering.
Sincerely, Me
P.S. If you write back, please write slow 'cause I can't read fast. Just kiddin ya Nan, I left the P.S. out and really signed my name, address phone# etc.
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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I just switched from Horizon BC/BS of NJ to Oxford PPO....b/c of this. Alot more money, but hopefully worth it in the end..
Unfortunately, we don't have a choice - we are insured through my husband's employer. If they start denying coverage, we would have to fight with them.
We would have good grounds for it, however, as both of my daughters were "adequately treated" (3 weeks amoxi for 10yo and 7weeks amoxi for 8yo) immediately following their bites and both are still symptomatic. We might be able to convince them that we are part of that "small group" who don't respond to short-term abx.
I'll keep praying that we fly under the radar a little longer...
-------------------- Getting older is when we would rather not have a good time than have to get over it. - Oscar Wilde Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Ok, I hear Marylanders are welcome to write too, so I reworded what I posted above, and here's what went to Ms. S.
(Dear Ms. S)
Thank you very much for your balanced article on the ISDA lyme treatment guidelines.
I think is important, however, to point out several misleading statements by Dr. Shapiro,one of the guidelines' authors.
In your article, Dr. Shapiro states that the guidelines provide "plenty of room for clinical judgment" on the part of physicians.
It is difficult to imagine a more disengenious comment by Dr. Shapiro. In fact, as he well knows, they do no such thing. The guidelines very specifically state that clinical judgement should NOT be used.
Why is Dr. Shapiro apparently unwilling to clearly represent one of the primary edicts of his guidelines now that they are in the public eye?
In addition, Dr. Shapiro's statement that lyme patients taking antibiotic therapy for "too long" develop antibiotic resistance is simply untrue. His contention that some patients develop serious infections from IV lines, though, is certainly accurate. My husband developed serious side effects from the chemotherapy he underwent for his leukemia. Does that mean his doctor shouldn't have offered chemotherapy to restore his health, even to save his life? Of course not. Why then such a different standard for Lyme?
Because as I know all too painfully, Lyme can be a a serious, even fatal disease. Undertreated while I was pregnant four years ago (3 weeks of standard dose antiobiotics), I now have brain encephalitis caused by neurological lyme. Even more painful to me, the precious son I was carrying at that time was infected in utero and now has lyme too.
Allowing the ISDA guidelines to stand guarantees many more horror stories of needless suffering, including by infants and children, and yes, death.
Sincerely, (dilly)
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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