more lyme overdiagnosis articles

Discussion in 'Fibromyalgia Main Forum' started by cbs1234, Sep 5, 2008.

  1. cbs1234

    cbs1234 New Member

    B. Svenungsson1 and Gudrun Lindh1

    (1) Dept. of Infectious Diseases, Karolinska Institute, Huddinge University Hospital, S-141 86 Huddinge, Sweden

    Received: 16 July 1996 Accepted: 13 January 1997

    Summary Ninety-nine patients who were referred to a clinic for infectious diseases on suspicion of Lyme borreliosis and whose major symptoms were fatigue, headache, myalgia and arthralgia were studied retrospectively to find out if there was any difference in symptomatology between patients who were seropositive or seronegative toBorrelia burgdorferi. 64/82 (78%) patients remembered one or more tick bites during previous years and 32/74 (43%) patients had a history of erythema migrans. Fatigue, headache, myalgia and arthralgia occurred in 84%, 72%, 54%, and 63% of the patients, respectively. 62/99 (63%) patients had an elevated IgM and/or IgG antibody titer toB. burgdorferi. There was no difference in frequency of symptoms between seropositive and seronegative individuals. 48/99 (49%) patients were treated with antibiotics, mostly oral doxycycline. Only 50% were improved after treatment. On follow-up 2 to 4 years after the first visit, 40% of the patients had recovered completely, 31% were improved, 24% reported unaltered symptoms and four patients were impaired. There was no difference in symptoms on follow-up between seropositive or seronegative patients. It is concluded that there probably is an overdiagnosis of Lyme borreliosis and that better microbiological methods are needed to confirm active disease.

  2. cbs1234

    cbs1234 New Member

    The Consequences of Overdiagnosis and Overtreatment of Lyme Disease: An Observational Study
    M. Carrington Reid, MD, PhD; Robert T. Schoen, MD; Janine Evans, MD; Jennifer C. Rosenberg, BS; and Ralph I. Horwitz, MD

    1 March 1998 | Volume 128 Issue 5 | Pages 354-362

    Background: The adverse consequences associated with overdiagnosis and overtreatment of Lyme disease, although previously recognized, have received inadequate attention.

    Objective: To determine the use of health services and occurrence of treatment-related illness, disability, and distress among patients in whom Lyme disease is inappropriately diagnosed or treated.

    Design: Observational cohort study.

    Setting: University-based Lyme disease clinic.

    Participants: 209 patients with a presumptive diagnosis of Lyme disease previously assigned by referring physicians, the patients themselves, or both.

    Measurements: Self-reported data, review of medical records, and standardized instruments were used to determine 1) use of health services in terms of number of outpatient visits, number of physicians seen, types of serologic tests, and days of antibiotic treatment; 2) occurrence of antibiotic-related adverse events; and 3) levels of disability, depression, and stress.

    Results: Of the 209 patients, 44 (21%) met criteria for active Lyme disease, 40 (19%) had previous but not active Lyme disease, and 125 (60%) had no evidence of current or previous infection. In general, patients with active Lyme disease (who were not the focus of this study) had good outcomes. Patients with previous Lyme disease and patients with no evidence of Lyme disease used considerable health resources (median number of office visits, 11 and 7; median number of serologic tests, 4 and 4; and median days of antibiotic treatment, 75 and 42), had frequent minor adverse drug events (53% and 55%), reported significant disability (proportion of symptomatic days during which normal activities could not be performed, 16% and 18%), and had high rates of depression (38% and 42%) and stress (52% and 45%).

    Conclusions: Overdiagnosis and overtreatment of Lyme disease are associated with inappropriate use of health services, avoidable treatment-related illness, and substantial disability and distress

    Division of Rheumatology, The Alfred I. duPont Institute, Wilmington, Delaware, Jefferson Medical College, Philadelphia, Pennsylvania

    The medical records of 227 children ages 1 to 19 years referred to the Lyme disease pediatric clinic over a 32-month period since May 1990 were reviewed. Clinico-serologic criteria for a positive diagnosis were applied. One hundred thirty-eight of 227 referred children did not fulfill those criteria and became the study population. Four subsets of patients emerged: (1) 54 patients with predominantly subjective symptoms; (2) 52 patients with objective evidence for an alternative diagnosis; (3) eight patients who had documented infection in the past and continued with symptoms after antibiotic treatment; and (4) 24 patients with a history of tick attachment or prenatal/family history of Lyme disease. Serologic testing data from commercial laboratories were available for the 54 children from the "predominantly subjective" group; 50% were negative, and 50% were borderline or positive. Ninety-two percent of these patients were negative at retesting by our enzyme-linked immunosorbent assay (ELISA) and 100% were negative by Western blot. Fifty-seven percent of these patients had received treatment prior to our evaluation. Children residing in an endemic area who present with vague symptoms are being diagnosed with and treated for Lyme disease without clinical or serologic documentation. In addition, fear in the lay community may be inducing doctors to diagnose Lyme disease in patients with symptoms that may be suggestive of an alternative diagnosis.
  3. GoWest

    GoWest New Member

    CBS, I assume you have suffered severe damage from being given quinolone antibiotics for Lyme disease. You have my deepest sympathy. I am in the same boat.

    But, I hasten to add, that Lyme is a severe and largely undiagnosed infection rampant in the US and Europe. It needs to be diagnosed and treated aggressively right away after a tick bite.

    It does NOT need to be treated with quinolones. Period.

    I suspect you need help for your ongoing Lyme infection and your ongoing quinolone damage.

    One thing that will probably help you with both is increasing your glutatione levels. The simplest, safest way to do this is to take ImmunoPro RX. I do not sell this product.

    Here is a link to the best info there is on dealing with quinolone damage.

    Dr. Jay Cohen, MD specializes in analysis of drug problems. Here is the newest article on his webpage. It is about dealing with fluoroquinolone toxicity after the fact - great news, because up til now there really didn't seem to be anything that helped. He is recommending glutathione injections - something the chronic fatigue syndrome patients have been doing for a long time.

    I would suggest that ImmunoPro RX which is a undentatured whey protein might also work by raising glutathione levels naturally.

    Paula Carnes
  4. frango2

    frango2 New Member

    My sister was on Levaquin for a month for chronic sinusitis. It worked wonders for her.

    Even the CDC agrees that Lyme is seriously under diagnosed.
  5. GoWest

    GoWest New Member

    Yes, quinolones kill germs. Trouble is you are playing Russian roulette with them. They also destroy human cells. Based on the new information I posted at the link above it looks like folks with lowered cellular glutathione levels may be more likely to get cell damage. Quinolones seem to hone in on tendons and nerves. Given that cfs patients are notoriously low in cellular glurathione I think quinolones are a huge risk. Other antibiotics will target borrelia, mycoplasmas, c.pneumonia etc. Probably nothing will ever completely clear borrelia or the rest of the mess. A good combo for a few years may control it.

    Paula Carnes
  6. Junegal

    Junegal New Member

    They do not believe in chronic Lyme Disease.
  7. cbs1234

    cbs1234 New Member

    Here is the quote from CDC website stating there is a problem with both underreporting AND OVER DIAGNOSIS--

    The findings in this report are subject to at least three limitations. First, Lyme disease surveillance is complicated by both underreporting and overdiagnosis of cases (4,5). Second, differences in patient demographics (e.g., age and sex) among states with above-average and below-average incidence suggest variation in diagnostic and reporting practices among states (6). Finally, clinical information on symptoms is not verified independently and often is incomplete.

    [This Message was Edited on 09/08/2008]
  8. cbs1234

    cbs1234 New Member

    Excerpt from the article:

    Earlier this month, scientists at Columbia University Medical School announced the opening of the Lyme and Tick-Borne Diseases Research Center, established with a $3-million gift from two of these organizations, Time for Lyme and the Lyme Disease Association.

    Heading the new institute is Dr. Brian Fallon, a scientist who says that he wants to address the controversy head-on and develop a test that will identify active infection.

    Back in the late 1990s, Fallon was awarded $5 million in federal grants to conduct a long-term antibiotic study and collect brain scans from these patients. The study, finished two years ago, is under review by a major scientific journal, Fallon said. Now he's hoping to unravel the mysteries of chronic Lyme by bringing experts from all walks of science into the fray.

    Fallon, an associate professor of clinical psychiatry at Columbia, said that in the study the antibiotics worked initially on reducing pain, fatigue and mental fog, but six months later patients were no better than those who did not receive long-term therapy.

    "I would have loved for it to work out, but it didn't," Fallon said. He said he did find evidence of an abnormal circuitry on the brain scans of some of those with chronic Lyme disease, and the abnormality did not change with the antibiotic treatment.

    "It's uncertain whether it is a low-grade chronic infection or a post-infection syndrome," he said. "But the patient community is sick, and for a long time it wasn't acknowledged."
  9. cbs1234

    cbs1234 New Member

    Kim Yastrzemski has been on and off intraveneous and oral antibiotics for close to eight years - one of thousands of people diagnosed with and treated for a chronic and persistent infection known as Lyme disease.

    She doesn't remember an actual tick bite or classic bull's-eye rash, but her doctors found evidence that the common Borrelia bacteria have been in her body. Time and again, antibody tests to diagnose Lyme disease came back positive.

    But this pesky bacterial bug - and the test used to diagnose exposure to it - have been at the heart of a raging controversy on the very definition of Lyme disease. Mainstream infectious disease experts argue that there is no evidence that Lyme borreliosis (infection) remains in the body after a few weeks to a month of antibiotic treatment. These doctors are not doubting that patients like Yastrzemski are suffering from real and persistent symptoms - from headaches to sheer exhaustion - but they question the trigger for these problems, and worry about the ongoing exposure to antibiotics.

    On the other side, some maverick doctors have built thriving practices on the back of the bacterium, diagnosing Lyme for a laundry list of unexplained symptoms and a Lyme antibody test that picks up whether a person has ever been exposed to it. The antibody test is not a marker for active infection.

    "There are a lot of people who think they have Lyme disease but don't," said Dr. Raymond Dattwyler, an infectious disease expert who once studied Lyme disease at University Hospital in Stony Brook and has since moved to New York Medical College in Valhalla. "We are not serving these people well. We have no definition for chronic Lyme disease or [know] that there are any effective treatments for these patients' ongoing symptoms."

  10. cbs1234

    cbs1234 New Member

    Dattwyler and other infectious disease doctors who treat Lyme disease argue that a minority of doctors have made it their business to diagnose and treat ongoing symptoms as a chronic Lyme infection while the real triggers for these symptoms can be ignored or missed.

    Dattwyler said the government has thrown a lot of research money at studying persistent infection associated with Lyme disease, but the bacteria just aren't there after the acute infection is treated. In one multi-center study, led by Dr. Mark Klempner of Boston University School of Medicine, 129 patients with well-documented Lyme disease who were acutely treated but complained of lingering symptoms were split up to receive three months of either antibiotics or a placebo.

    'No evidence of bacteria'

    At several points during treatment and months later, patients were asked how they felt. The equation was always the same, no matter when they were asked: A third felt better, a third felt worse and the others said they felt no change. Kempner said he and his colleagues took samples of spinal fluid, blood and urine, searching for evidence of active infection.

    "Over 750 lab exams," Klempner said. "And not a single person at any point in the study had evidence of the bacteria."
  11. cbs1234

    cbs1234 New Member

    What's more, doctors say that attention to Lyme can lead to missed diagnoses of other problems. Dr. Sunil Sood, chief of infectious diseases at Schneider Children's Hospital, part of North Shore University Health System, said that he has seen children with undiagnosed brain tumors and juvenile arthritis who were thought to have Lyme.

    Dr. Larry Zemel, chief of rheumatology at Connecticut Children's Medical Center in Hartford, agrees. "I have documented case after case of children with arthritis, even leukemia, who were being treated for Lyme disease - mistakenly."
  12. Catseye

    Catseye Member

    Most people don't really care about something until it affects them. Take MADD for example, these are parents who have lost children to drunk drivers. I doubt they were campaigning against drunk driving before they lost a child. I'm no different - I didn't understand bogus the medical profession's treatment of chronic diseases was until I went through suicidal agony. Then I dug for answers. Lyme keeps showing up where ever I dig. There isn't much information coming through to us health-wise unless it has some studies behind it that are there to increase profits for somebody in some way.

    Cbs, why are you so focused on lyme instead of the bogus way the medical profession handles chronic diseases? We could be having the same discussions about the statin drugs, obesity, acid reflux, gut dysbiosis, liver congestion, allergies, etc. - basically any chronic problem.
  13. cbs1234

    cbs1234 New Member

    Because the incorrect diagnosis can and does hurt people!!

    That's why.
  14. Catseye

    Catseye Member

    Yes, but it hurts people because of the bogus way they approach chronic diseases - without really treating the cause or giving us what we need. Just like with every chronic disease, not just lyme.
  15. cbs1234

    cbs1234 New Member

    I agree with you in many ways but still don't agree with the lyme epidemic side of things. We will agree to disagree.
  16. aftermath

    aftermath New Member

    <blockquote>It is written by Infectious Disease docs 09/06/08 02:09 PM
    They do not believe in chronic Lyme Disease.</blockquote>

    This is the same group of scu*bags that have for years claimed that CFS is depression.
  17. frango2

    frango2 New Member

    please ignore these threads if your CFS/fibro is caused by Lyme...
  18. EricaCFIDS

    EricaCFIDS New Member

    I'm always interested in NEW ideas and NEW research, but these are from 1996, 1997, 1998 and many of your quotes don't give a link or a date?

    Medicine and research is like technology.....something 6 years ago means far less than 6 months ago. Those are ancient history!

    Show me something recent!! I love to read current facts!

  19. EricaCFIDS

    EricaCFIDS New Member

    I do need one of those!

    I was just hoping for some recent information......
  20. cbs1234

    cbs1234 New Member

    Wow, guess those ignore buttons don't seem to be working for you guys.

    No, all of the articles posted in various threads are not from the nineties. Some are relatively new.