Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
This sample letter is for IDiot ducks to send to Congress.
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The Honorable �First Name� �Last Name�
�State Legislature Name�
�Street Address�
�City�, �State� �Zip Code�
Dear �Title� �Last Name�,
I am an infectious diseases physician treating seriously ill patients in and around �City�, �State�.
This letter is to express my strong opposition to Legislative Bill �Bill Number�, which sanctions the use of long-term antibiotic therapy to treat Lyme disease.
In urging your opposition to this legislation, my primary concern is to ensure the best quality in patient care and to protect the public's health and safety.
To this end, I believe it is critically important that you be fully apprised of the widespread consensus within the medical and scientific community about the appropriate treatment of Lyme disease, as well as the medical community's concerns about unproven, potentially harmful treatments for so called ``chronic'' Lyme disease that are advocated by a small group of physicians.
As you may know, Lyme disease is a tick-transmitted infection that can cause non-specific symptoms such as muscle and joint pain, fevers, chills, fatigue, and difficulties with concentration or memory loss.
Some patients may continue to experience these symptoms even after a course of antibiotic therapy has killed the Lyme disease bacterium. A small group of physicians have diagnosed such patients as having ``chronic'' Lyme disease.
Many of these so called ``chronic'' Lyme diagnoses are supported by laboratory tests that are not evidence based and are not regulated by the Food and Drug and Administration.
Even more troubling, physicians who diagnose ``chronic'' Lyme disease often advocate treating patients with repeated or prolonged courses of oral or intravenous antibiotics that have no proven value other than an anti-inflammatory response in some individuals, and which may in fact do more harm than good.
Of greatest concern is the bill's misguided attempt to sanction the use of long-term antibiotic therapy to treat Lyme disease.
The premise for prolonged antibiotic therapy for Lyme disease is the notion that some spirochetes can persist despite conventional treatment courses, thereby giving rise to the symptoms ascribed to chronic Lyme disease.
Not only is this assertion microbiologically implausible, there are no convincing published scientific data that support the existence of chronic Lyme disease.
Rather, carefully designed studies of Lyme disease have demonstrated that there is no difference in the measured improvement between patients receiving placebo and patients treated with antibiotics.
A recent New England Journal of Medicine article stated unequivocally ``that there is little or no benefit associated with additional antibiotic treatment for patients who have long-standing subjective symptoms after appropriate initial treatment for a properly diagnosed episode of Lyme disease.''
Furthermore, the scientific evidence indicates that long-term antibiotic therapy may be dangerous, leading to potentially fatal infections in the bloodstream as a result of intravenous treatment.
Also, although the bacteria that causes Lyme disease does not acquire resistance to antibiotics, long-term antibiotic exposure can lead to drug-resistance among other
Page Two - Lyme Disease Letter
microorganisms, creating ``superbugs'' that cannot be treated with currently available drugs.
In summary, far from improving the patient's quality of life, prolonged antibiotic therapy may actually increase the patient's suffering.
As an alternative to enactment of Legislative Bill �Bill Number�, I urge the committee to hold public hearings on Lyme disease.
Such hearings could play an important role in educating our fellow citizens about the controversy surrounding the treatment of this debilitating condition.
However, in order to ensure that legislators get a science-based assessment of appropriate treatments for Lyme disease, I strongly urge you to invite board-certified ID specialists who support evidence-based medicine to testify at all public hearings.
On a personal note, as an ID physician who treats patients with serious infections on a daily basis, I have profound empathy for patients who are ill and have been told their illness is due to ``chronic'' Lyme disease.
I do not doubt that these individuals are suffering, but many report non-specific symptoms that may be attributable to a number of medical conditions.
Therefore, I would strongly encourage patients who are diagnosed with ``chronic'' Lyme disease to seek an expert second opinion to enhance their opportunity for a correct diagnosis and appropriate treatment.
For more information on Lyme disease and the recommendations by the vast majority of experts in the field, please visit websites for IDSA (www.idsociety.org), the Centers for Disease Control and Prevention (www.cdc.gov), the National Institute of Allergy and Infectious Diseases (www.niaid.gov), the American Academy of Neurology (www.aan.com) or the American College of Physicians (www.acponline.org).
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Tincup,
I know that here in New Hampshire, we have been going the letter route hard on Judd Gregg and he just sends back the usual canned note that basically acknowledges that he's gotten the letter, but nothing seems to be penetrating.
I had no clue that the IDSA doctors were sending out letters like this. What is really in it for THEM to keep doing this? I still can't fathom why they prefer to make us all just seem crazy after so many of us have been helped by these antibiotics.
Just recently, we got news in New Hampshire that ticks tested in three of our counties came back with 50 percent of them all being infected with lyme disease. Doesn't this mean anything to these doctors? Doesn't this SHOUT "epidemic"????
But their only rebuttal is that yes, they are finding more cases but that's why "early treatment" is so importatnt, blah blah blah. But what about all of us that slipped through the cracks?
We've written so many letters but I have to admit ours have been focused at the state level with the local support group. But you are right... I think we need to move it even further and will make my calls today. (the 3 mentioned in your other post) I'm guessing they won't be opened for another hour or two?????
Thank you for the information. I would have never believed this could actually be happening in our own country.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
Lyme bacteria can 'hide' from medicine, study says Behavior may help explain symptoms after treatment
By Suzanne Bohan, STAFF WRITER Article Created: 04/17/2008 02:34:00 AM PDT
A recent study from the University of California, Davis, provides the first evidence that the bacteria causing Lyme disease can evade antibiotics by "hiding out" in tissue throughout the body and remain infectious long after treatment ends.
"Lyme disease is a tough nut to crack," said Stephen Barthold, the study's lead researcher and director of the university's Center for Comparative Medicine. "The bacterium causing Lyme disease has evolved to evade the body's immune system, so it's not surprising that it can also evade antibiotics."
The study found the hidden bacteria, however, appeared dormant, although it still produced proteins potentially capable of continuing Lyme disease symptoms, he said.
The article appeared in the March issue of the journal Antimicrobial Agents and Chemotherapy, and the research was funded by the National Institutes of Health.
The findings provide critical data in the quest to offer relief for those certain they're suffering from the sometimes crippling symptoms of Lyme disease years after their initial infection and subsequent treatment. Patients with these chronic symptoms often report joint inflammation and arthritis, memory loss, mood changes and sleep disorders, among other health problems.
Some also fear they face a similar fate as those with untreated Lyme disease - including carditis, also called heart inflammation, and nerve damage.
The Centers for Disease Control and Prevention lists Northern California as an active region for Lyme disease transmission, although it's most prevalent in the Northeastern and Great Lake states. The bacteria are spread primarily by Western black-legged ticks in California and deer ticks in other regions of the country.
"There's no doubt about it, it's here," Barthold said. But in a novel ecological twist, when young ticks feed on a certain species of lizard, something in the lizard's blood clears the Lyme disease-causing bacteria from the tick, so most adult ticks in California aren't infectious. Barthold said it's a key reason for the region's lower rate.
While some patients and their doctors advocate continued use of antibiotics for weeks, months or even years to combat the condition, the CDC and other major medical organizations state that evidence doesn't support more than two rounds of antibiotics, and that more aggressive treatment can prove harmful.
That leaves those with chronic symptoms long after initial treatment paying costly bills should they pursue continued antibiotic administration. Many insurers decline to cover long-term treatment for the condition, citing a lack of proven effectiveness.
Patients also report coping with anxiety and frustration over the limited medical options available to them for relieving their symptoms. Numerous Lyme disease advocacy groups have formed to call for better diagnosis and treatment protocols.
The UC Davis researchers infected three groups of mice with Borrelia burgdorferi, the bacteria that causes Lyme disease. Mice showed comparable symptoms of Lyme disease as humans and responded similarly to antibiotic treatment.
One group of mice received antibiotics during the first three weeks of infection, while another got antibiotics four months later. The third group received only a placebo.
When the treatments were completed, the placebo group showed continued infection in a standard lab test, while the two antibiotics groups showed no trace of the bacteria using the same test.
Nonetheless, researchers still found small numbers of Borrelia persisting in collagen-rich tissue in the antibiotic-treated mice that the lab tests missed. Collagen, a connective tissue, is found throughout the body, including in the skin, ligaments, tendons and the heart muscle. Barthold said it requires a tissue sample to find any hidden bacteria.
"It's an invasive procedure the medical practice simply doesn't do," he said.
In addition, ticks that fed on the antibiotic-treated mice still picked up the Lyme disease bacteria and transferred them to uninfected mice. These mice, however, didn't develop Lyme disease, since the hidden bacteria doesn't replicate like normal bacteria.
Testing in doctors' offices for this elusive type of Borrelia would provide limited value at this stage, Barthold added, since there's no known way to clear it out. He agrees with CDC guidelines warning against long-term antibiotic treatment.
"If the first round of antibiotics hasn't eliminated them, it's not likely that a longer regimen of antibiotics would be any more successful," Barthold said. "It's more likely that a completely different class of antibiotics would be needed to accomplish that."
But the findings do provide another explanation for the persistent symptoms reported by those treated for Lyme disease, particularly people who didn't swiftly get antibiotics following an infection.
Barthold said it appears these elusive Borrelia don't replicate, and instead remain dormant, as microbes causing herpes, tuberculosis and syphilis often do. He said it is unknown at this stage if these Borrelia may re-emerge and cause recurrent disease, although that's an area he and others intend to study.
But the nondividing Borrelia could release proteins that "may elicit continued symptoms in Lyme disease patients," he said.
Barthold said he sympathizes with those coping with chronic symptoms following a Lyme disease infection.
"Everybody wants an answer, and I don't blame them," he said.
For now, Barthold said the crucial result of his study is its role in creating an animal model that will allow researchers to study a variety of antibiotic treatments that eliminate even the hidden Borrelia, which ideally would one day work on humans as well.
"We can use that animal model - to test other antibiotic modalities, and as the best way to completely cure them of their infection," Barthold said.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I responded to that news article above my post. Suzanne, the girl who wrote the article made an error within the first sentence.
Correct me if I'm wrong: But this is "not" the first evidence of this behavior with borrelia burgdorferi against antibiotics or the immune system.
I have written her and stated:
Hello Suzanne, I wanted to compliment you on your article titled: "Lyme bacteria can "hide" from medicine, study says." While well written and incredibly useful I do want to offer a correction. You state within the first sentence: "A recent study from the University of California, Davis, provides the first evidence that the bacteria causing Lyme disease can evade antibiotics by "hiding out" in tissue throughout the body and remain infectious long after treatment ends."
This is unfortunately not true. The database for pubmed.gov has countless studies providing ample evidence that borrelia burgdorferi can evade antibiotics as well as the immune system of many animals, including primates and humans. Search pubmed.gov for "persistent borrelia burgdorferi" for proof of my claim. For further evidence with the actual studies from pubmed covering larger issues with Lyme Disease, you'll find this slide show by physician Dr. Stephen Phillips of Wilton Connecticut -- who specializes in Lyme Disease -- extremely thought provoking.
The Infectious Disease Society of America is at war with those of us and our friends and families who suffer form this infectious disease. The ISDA claims persistent infection after antibiotic therapy is not possible, and that while antibiotic therapy prescribed and taken for long term durations improve Lyme Disease patients symptoms and suffering, that we should not be given this treatment. The ISDA is the foremost society by which insurance companies and most physicians decide in how they'll either pay or prescribe for patients. Physicians are hostile to the plight of patients with this illness as a result of the IDSA guidelines, claiming we're "making it up" and that the illness is in our heads. The facts are in-fact that the illness is in our heads, but also throughout our bodies as a result of not being adequately treated for the persistent infection.
The fact is this Suzanne:
Despite the prevalence, severity, and economic costs of this illness, patients with Lyme disease are having increased difficulty obtaining diagnosis and treatment due to the monopoly which the IDSA holds over Lyme Disease treatment and diagnosis. The ISDA is being investigated specifically for this reason by Connecticut Attorney General Blumenthal, given the scientific literature does not support their one sided point of view. The ISDA physicians responsible for the this ongoing controversy often have conflicts of interests with other medical societies and physicians and insurance companies who depend on and utilize these guidelines to justify payment, and or providing adequate medical care to patients The results are simple: Treating the illness costs a lot of money, and insurance carriers do not want to pay for them. Physicians at the IDSA who are in a position to further this agenda and do so in their financial interests by ignoring scientific research suggesting long term medications and care are very helpful for patients with Lyme.
Thank you once again Suzanne for the excellent article.
Sincerely, Michael Parent
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
IDSA? :Anguis in herba - snake in the grass.?
Quis custodiet ipsos custodes - Who shall guard the guardians?
Caveat emptor non nesesse -The buyer need not beware?
ece signum - look at the proof..
Police verso - with thumb turned: with a gesture or expression of condemnation
-------------------- pingpong Posts: 361 | From At the Pingpong Tournament | Registered: Oct 2007
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bettyg
Unregistered
posted
michael, a friendly reminder that majority of us neuro-lymies can NOT read long BLOCK TEXT without it being broken up to shorter paragraphs and hitting ENTER TWICE to help us comprehend.
thanks for writing reply; i just can't read it.
IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
It is so nice to come to "work" and see things that make me smile!
You all are fantastic!!!
td... yes the "canned" answers are just that. "Canned".
They may try to get us to believe they are listening.. but the work on this bill and educating them has been going on for 10 years!
And still NOTHING!!!
Patients MUST join together and stand up to say what they want.
NOW is the time!
We snooze we lose.
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Tree...
Thanks for posting that. I've been way too swamped to stop and read it. Glad you set it there in my face!
It sure helped!
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MB!
We are going to have to grab you up with skills like that. Good for you!!
SOooooooooooooooooooo nice to see a well written letter making points to educate others. You have a gift.
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