Topic: Long term, short term or a punch in the nose?
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
HA! The debate goes on. Do patients need long term treatment for chronic Lyme? Or is short term better?
Perhaps both sides are wrong.. and we now have a "Camp C".. and all that is needed is a punch in the nose?
```````````````````````````````````````````````` This first article was published today in the Daily Times on Sunday, September 24, 2006 (Salisbury, MD) in response to the letter below it.. which was in response to the letter below that.
Using emotion or demands won't defeat Lyme disease
RE: "Don't let negativity influence Lyme struggle," Sept. 19; and "Doctor's letter on Lyme disease missed the mark," Sept. 20
Progress in Lyme won't come from attack or anecdotal data.
Daily Times readers have seen portions of the national debate on Lyme in recent letters to the editor. Lyme advocates have seen the terrible consequences of untreated Lyme and felt the indifference of some in the medical community.
They take their experiences and demand their conclusions be applied to all people exposed to ticks -- as if their experiences, which we call anecdotal data, conferred strength in logic for medical practice.
It doesn't.
I called for facts, not emotion, in arguments over Lyme. The wife of a Lyme patient responded with emotion.
I called for an approach to diagnosis of Lyme not based on assumption, but based on data from large populations of Lyme patients. A second writer responded with his own experience, as if a data set of one could be convincing.
I called for respect and not throwing stones at physicians, and the second writer attacked me.
Too bad that writer didn't attend my invited lectures, either at the Easton Lyme meetings in March or the International Lyme meetings in Dallas in May.
He might have learned something if he had listened.
{MY NOTE- ACTUALLY THE WRITER AND THESE OTHER PEOPLE MENTIONED FROM THAT GROUP WERE IN ATTENDANCE AT THE MEETINGS, ALONG WITH SEVERAL HUNDRED OTHERS}
Throwing rocks doesn't work to educate anyone, especially when the rock-thrower is dead wrong. Like the little boy who cried, "Wolf!" we are less likely to listen a second time to Lyme advocates who leave logic and respect behind.
The advocacy for Lyme patients that is finally getting heard in Congress is based on data, not demands.
On the other side of the Lyme issue are some physicians who deny any illness from Lyme existing beyond three weeks of oral antibiotics, who attack Lyme--treating physicians as practicing bad medicine.
They are wrong too.
Undermining the Lyme debate are possible conflicts of interest from those who profit from use of any therapy, especially antibiotics.
I practice medicine based on solid data; my opinions have been accepted in legal testimony on Lyme cases in Maryland, Virginia and Delaware.
While I'm pleased the genetic basis of "Post-Lyme Syndrome" our group published in 2003 was confirmed in 2006, there still is much to be done to unravel the complex inflammatory puzzles seen in patients with Lyme.
It's time for Lyme advocates here to learn what the Lyme group in Easton already knows: To help others with Lyme, one must learn more first.
Dr. Ritchie C. Shoemaker
Pocomoke City
Shoemaker is director of the Center for Research on Biotoxin Associated Illnesses in Pocomoke City. --Editor
September 20, 2006 Daily Times- Letter to the Editor
Doctor's letter on Lyme disease missed the mark RE: "Diagnosing Lyme is a complex, difficult process," Sept. 11
I read with great interest Dr. Ritchie Shoemaker's recent letter to the editor on the diagnosis and treatment of Lyme disease. Unfortunately, Shoemaker was off base on several key points.
I know of no physician that prescribes long-term antibiotics for every Lyme patient. While testing has improved, it is not yet "impeccable." As a result, Lyme disease is still a clinical diagnosis, as stated by the CDC. If a patient clinically diagnosed for Lyme does not respond well to antibiotics, any competent physician would look at other causes of the patient's illness.
Shoemaker's claim that Lyme patients rarely need long-term antibiotic treatment is patently false. After eight months of antibiotics, I felt better, requested to be taken off medicine and quickly got sick again. After another 18 months of treatment, I was much better and have not had a sick day since.
Did 18 months of additional therapy cure my "inflammatory illness" or did it kill off the Lyme bacteria? I know dozens of people with similar stories. Were thousands of patients, including myself, treated with long-term antibiotics cured of Lyme disease or "mold exposure?"
While overdiagnosis and overtreatment of Lyme disease happens, these cases are minute compared to cases of misdiagnosis and undertreatment. While it is not our intention to "throw stones" at physicians, we do intend to keep informing the public how it is being grossly underserved -- until they acknowledge the epidemic of Lyme disease here on Delmarva.
Efforts taken by some local physicians to educate themselves on Lyme disease and act in the best interest of their patients are greatly appreciated. A high percentage of physicians who spoke at the Easton meeting are International Lyme and Associated Diseases Society members and are "top drawer" in Shoemaker's words, yet I find it interesting that he does not include himself in that group.
Dale E. King
Delmar
King is president of the Lyme Disease Association of the Eastern Shore of Maryland Inc. -- Editor
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http://www.delmarvanow.com/apps/pbcs.dll/article? > AID=/20060911/OPINION03/609110321 > > The Daily Times > Salisbury MD > September 11, 2006 > > Letters to the Editor > > Diagnosing Lyme is a complex, difficult process > > RE: "Lyme on the rise on Shore, but not doctors to > treat it," Aug. 7; and "Few Delmarva physicians trained to recognize Lyme," Aug. 24 > > Recent letters to the editor have implied physicians > who don't prescribe long-term antibiotics for suspected Lyme disease are > incompetent. > > Nonsense.
Lyme patients rarely need prolonged > antibiotics. Our data on 1,500 patients show the vast majority of post-Lyme patients have > an inflammatory illness that requires specific > interventions following antibiotics -- not antibiotics forever.
> Denial or diagnosis of Lyme based on a flawed diagnostic test or no test is wrong. > > We often see patients both under- and over-diagnosed using clinical diagnosis alone. > > The pathophysiology of chronic Lyme is readily > demonstrated by commercially available lab tests looking at the inflammatory basis > of the illness. Be wary of results from any lab that demands cash payments. > > Practicing physicians acknowledge the diagnostic and therapeutic challenges posed by Lyme. The tragedy of incorrect diagnosis is > measured both by disability from untreated illness and injury from over-treatment with unnecessary antibiotics, not to mention delay in > proper diagnosis.
Until recently, no tests could > show if a patient had living Lyme spirochetes. Our paper, sent last month to the New > England Journal of Medicine on use of C4a, may be a breakthrough. > > Consideration of "Lyme literacy" begins with > rock-solid facts, not unfounded assumptions from either Lyme-naysayers or Lyme-advocates. > Many other illnesses look like Lyme, but are not.
> Without a careful > differential diagnosis of patients with complex, > multisystem, multisymptom illness, we routinely see nonsense diagnoses like > fibromyalgia, chronic fatigue and Lyme too, when the illness can be shown to be something else. > > Mold exposure leads the list of confounding > diagnoses, as demonstrated by our three recent peer-reviewed publications. > > Some practitioners assume all patients with chronic multisystem illness have Lyme. They often prescribe intravenous antibiotics that > they themselves dispense, collecting fees often > exceeding $15,000 a month.
Tests used to confirm such "expensive Lyme" must be > impeccable. Clinical diagnosis of "expensive Lyme" must be impeccable. > > I was a member of ILADS, the society of "Lyme > literates" for three years, lecturing at meetings of both ILADS and the Lyme Disease > Association in Easton from 2000 to 2002. In 2003, I quit both groups. > > Throwing stones at physicians is a losing approach to thinking. Look at the Mid-Shore Lyme Disease Association in Easton; > they sponsored a national meeting with top-drawer Lyme physicians in March 2006. > > Having Lyme disease can be a terrible problem; let fact -- not emotion -- sway the approach to the patient. > > Dr. Ritchie C. Shoemaker > > Pocomoke City > > Shoemaker is director of the Center for Research on > Biotoxin > Associated Illnesses in Pocomoke City. -- Editor >
posted
Methinks his position is pre-emptive, to avoid a strike from the evil empire. I am not one of them, he says, so don't go after me.
Any clinician that ignores patient input and response to treatment or lack of treatment is not doing a good job. A good clinician uses not just published information, which as we know from lyme can be biased, but also the totality of anecdotal evidence. How else are you going to arrive at a scientific hypothesis to test? In the case of chronic lyme, so far the truth has been better seen in the composite of clinical practices rather than in the lab, where so far the majority of studies were poorly designed and incorrectly interpreted.
His mold bias is just as obvious as the bias he claims to see in lyme doctoring.
Posts: 8430 | From Not available | Registered: Oct 2000
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I'm surprised they published such a poorly written letter. He refers to the letter as an attack but then accuses the other author of emotion?
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Not only C4a but C5a >histamine > acetylcholine > C3a These all presentb themselves in numerous disease functions Alzhiemers, heart attacks,cystic fibrosis, lupus and also geneticaly defective problems.
Its the bodies reponce to damage either by infection or damage inflicted by contusions or heart attack or infection. Its just part of the whole picture anytime you have tissue damage these responces from C3 C4a C5a and others is the bodies responce immune or otherwise.
So to think Dr S has figured something new out and specific is bull sh*t.
Mold and fungus and any disease ie Lyme,RMSF any one of them that cause a immune reaction. Causes those to be expressed.
-------------------- 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.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by Tincup: Hey lou, Big A and Tree..
Nice to see you!
Nice to see you too TC
-------------------- 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.
tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Ever watch a cat on a fence? Rather than walk on one side of the yard or the other, she will walk on the top of the fence--all away around the yard, rather than let her feet touch the ground on either side.
Dr. R.S. is a brilliant man. But reading his letters brought that fence-walking image to my mind.
I agree with what he is saying about not throwing stones. Lyme advocacy can get much further approaching it logically and scientifically. But other than that, he doesn't seem to be camping on either side of the Lyme treatment issue.
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