good EXPLANATION of Lyme controversy & MORE

Discussion in 'Lyme Disease Archives' started by victoria, Jun 2, 2007.

  1. victoria

    victoria New Member

    From The Clinical Advisor[showUid]=1542

    From the May 2007 issue of Clinical Advisor

    Clinical Feature

    Controversy continues to fuel the “Lyme War”
    By Virginia Savely, RN, FNP-C

    As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.

    Controversy over the treatment of a particular disease is not uncommon. There are many illnesses for which there are different schools of thought and more than one treatment method—e.g., heart disease, prostate cancer, and breast cancer. When it comes to Lyme disease, a bacterial infection caused by the corkscrew-shaped spirochete ,Borrelia burgdorferi, the battle lines are particularly distinct, and the opposing viewpoints reach vitriolic proportions, to the ultimate detriment of the patients.

    Lyme disease, which is most commonly acquired through the bite of an infected tick, has been reported in every state and has become the most common vector-borne disease in the United States. In 2005, the CDC received reports of 23,305 cases, resulting in a national average of 7.9 cases for every 100,000 persons. In the 10 states where the infection is most common, the average was 31.6 cases for every 100,000 persons. The CDC estimates that the disease is grossly underreported, probably by a factor of 10.

    The Western blot test

    Because B. burgdorferi is an extremely difficult bacterium to culture in the lab, testing has relied on detection of antibodies to the organism. The Lyme enzyme-linked immunosorbent assay (ELISA) gives a titer of total immunoglobulin (Ig) G and M antibodies and is currently the accepted initial screen for suspected disease. Since a screening test should have at least 90% sensitivity, the 65% sensitivity of the commercial Lyme ELISA should lead to its reconsideration as an acceptable screening tool.

    The Western blot, which is commonly used as a confirmatory test for Lyme disease, is more sensitive than the ELISA. While the CDC has published strict criteria for positivity on the Western blot to make a more exclusive cohort for epidemiologic purposes, it never intended for these criteria to be used for diagnosis. Unfortunately, the restrictive criteria omit several of the important bands on the blot that are highly sensitive markers for the presence of B. burgdorferi (see "Interpreting the Western blot,"). Clinicians should become acquainted with the relative sensitivity and specificity of each of the bands on the blot to make an appropriate assessment for diagnostic purposes. A negative test based on epidemiologic criteria may be a positive test for diagnostic purposes.

    Treatment dilemmas The Lyme spirochete presents a formidable adversary. With more than 1,500 gene sequences, B. burgdorferi is genetically one of the most sophisticated bacteria ever studied. Treponema pallidum (the spirochete responsible for syphilis), for example, has 22 functioning genes whereas the Lyme disease spirochete has 132.

    [This Message was Edited on 06/08/2007]
  2. mollystwin

    mollystwin New Member

    I copied this for future use. Gread info.
  3. bct

    bct Well-Known Member

    Now if it were only made mandatory reading for ALL health professionals!

  4. jarjar

    jarjar New Member

    I nearly copy and pasted this the other day and got busy.

    Virginia S lived here in Austin and worked as a LLRNNP but had to leave the state due to a crackdown on Lyme docs and nurses.

    She is a recovered lyme patient herself although she stills has to be carefull and not stretch herself too much.
    Many people still travel to California to see her from this area and hope someday we can bring her back.

    She is a warrior fighting for us!
  5. victoria

    victoria New Member

    My son's doctor is going to be relocating end of summer to a 'friendlier' state than NC;

    despite reorganizing to do research, NC will not allow him to do anything different now than what they dictate - which of course are by the guidelines of the ISDA and the Neurological Assoc.

    all the best,

  6. jarjar

    jarjar New Member

    I agree it is a shame. Even before the IDSA guidelines were coming out they were after Ginger. Or should I say they were writing threatning letter to the M.D. she worked under.

    In California there are laws where no one can come in and say no you have to do this or that. The Dr. has full right to practice medicine how he sees fit. So that is her home currently.

    Hopefully we will see more state laws enacted to cover other states similiar to California.

  7. victoria

    victoria New Member

    The Washington Post recently carried an article critical of the 'Chronic Lyme' diagnosis and disparaging of Lyme advocates for choice in care and LLMDs. It was flippant, and worse was the very last paragraph which I'll print below. (You can read the whole article by looking it up online with the title etc.)

    There were some very interesting replies to the article, one of which cites references that the very people who are now against more than a few weeks of abx did research in the early 19990s that stated/concluded the opposite.


    Combat Zone
    There's No Neutral Ground in War Of Information About Lyme Disease
    By Jason Feifer Special to The Washington Post Tuesday, May 15, 2007;

    (last paragraph:)
    Wormser, author of the IDSA guidelines, said that throughout medical history, groups of people have blamed diverse and medically unexplained symptoms on a wide variety of ailments. Instead of chronic Lyme, he said, it was once chronic Epstein-Barr, and another time it was chroniccandida. The difference now, he said, is that the Lyme groups are so loud.
    I'm surprised he didn't name CFIDS/FM as well!

    Here are some excellent responses to the article, with good information:

    DeepBlueDolphin (5/20/2007) wrote:
    I could go on for pages arguing the points in Mr. Feifer's article, but frankly, I don't have a lot of time and energy, having chronic Lyme myself. I'll just add a few points...

    First...personal history. When I finally got the diagnosis of Lyme, it was years too late to prevent chronic disease. ...(edited)... When I learned how many people in Mary-land, DC, and Virginia have Lyme -- way more than the CDC estimates -- and that the numbers are not just growing but escalating, I kept wondering WHERE IS THE OUT-RAGE? Where are the people protesting and demanding more research for a cure?

    ...So, when I saw the article "Combat Zone" which seemed to say that the Lyme advocacy groups are now vocal and uppity, I said "Hooray! It's about time!" Lyme patients need advocates just as much as AIDS patients did in the early 1980s. In this country, nothing happens without organizing and activism.

    I would also like to say that people don't join advocacy groups, pay memberships, make donations, and chase politicians because they have nothing better to do with their time and money. They do so because they feel they HAVE TO. I was one of those people emailing Karen Montgomery and many other people in the Maryland State-house. I would much rather have been spending my weekend doing other things, just like I could be enjoying my Sunday evening right now.

    Another point, if you want to see an explanation of why Lyme Wars or the "Combat Zone" exists, take a look at the Washington Post article "Where Did the Doctors Go?" published Sunday, May 20, 2007, page B2, written by Washington Post staff writer Jonathan Weisman, about his daughter's afflicton with a very complex and difficult to treat disease. Check out paragraph six:

    "The troubled story... finds it's roots in an American medical system that spins cookie-cutter procedures into gold while penalizing the specialists who deal with patients like my daughter---tough cases that take time, thought trial and error, lots of medicine but not much hardware. Under our system, the cardiac "cath jockey" who can slide dozens of catheters into arteries in a week or the opthalmologist who flies throughproduction-line cataract surgeries will always be living considerably larger than the physician puzzling over the debilitating aches in Allisa's legs." The same situation applies to Lyme! It's NOT a simple infection, easily cured. No two patients look the same, or respond the same to treatments. No sure-fire prevention or cure exists. Doctors like those in IDSA send you away after a month of treatment and tell you that you are cured -- because they said so.

    Finally, Mr. Feifer, please don't point the finger at Lyme patients for trying alternative or unorthodox treatments. We KNOW we are the laboratory animals for this disease. We're not nuts. We just want to get well, or in some cases, just survive and have a decent life again.

    kevin4 (5/16/2007 wrote:
    It is possible for mainstream science to be wrong, as when it taught that the earth was flat. It is -especially- possible for mainstream science to be wrong when politics, power, and money are injected into the equation -as when it taught the earth was flat.

    cdjwalker (5/19/2007) wrote:
    In this world, there are sins of commission and sins of omission. The latter involves what is not said and done, versus what is.

    While Mr. Feifer was long on quotes and praise for the Inf. Disease Soc. of America, he was short on details when it came to the credible institutions that have allied themselves with the "persistent Lyme theory" and the patients' advocacy groups.

    Although Mr. Feifer breezed over the issue, Attorney-General Richard Blumenthal of Connecticut is investigating the IDSA for such serious charges as anti-trust violations, monopolization, and exclusionary conduct. They quote only 405 of the 18,537 available studies in their new Lyme treatment guidelines, while simultaneously pursuing patents and remuneration from products that depend upon the idea that Lyme is simple to "cure". Worse yet, many of these IDSA "experts" receive compensation from insurance companies that have a vested interest in limiting treatment - as the IDSA guidelines recommend.

    In ignoring 98% of the published literature on Lyme and tick-borne infections and in rejecting input from treating doctors and other researchers in the field, the IDSA has raised an aura of exclusionary conduct. They simply don't want to be confused by the facts that interfere with their bottom-line.

    In disparaging anyone who dissents and especially in last month's attempt to make the IDSA guidelines the official policy of the Maryland health department (the Montgomery bill referenced by Mr. Feifer), the IDSA raises the specter of monopolization. The Blumenthal inquiry is well-deserved but not well-explained by Mr. Feifer.

    In a March 21, 2007 interview with the Hartford [CT] Courant, AG Blumenthal said that his investigation of the IDSA has revealed "conflicts of interest that are credible and powerful". Small wonder given their paranoid behavior!

    ...The Washington Post accepts the IDSA's criticisms of hyperbaric oxygen therapy as though there exist no medical professionals capable of defending it. Apparently, Mr. Feifer did not look into the work of Dr. William Fife at Texas A & M, who tried hyper-baric therapy based on research that Lyme spirochetes will die when exposed to an oxygen saturation between 4% and 22%. He improved many Lyme patients' lives with hyperbaric therapy, leading to its popularity today.

    In terms of pulsed antibiotic therapy, at least one medical study recommends pulsing the antibiotic cefotaxime to treat cancerous skin lesions associated with Lyme infection (Kutting B, et. al. J Am Acad Dermatol. 1997 Feb;36(2 Pt 2):311-4). Besides that, pulsing is premised on the long life-cycle and sequestering techniques of the Lyme bacterium, which lead to a game of bacterial "hide-and-seek". Why does Dr. Wormser invoke AIDS as a counter-example? That's not only a markedly different infection, but a virus!

    Finally, it's too bad that the Washington Post did not clarify that the Lyme disease vaccine was withdrawn amidst a firestorm of lawsuits concerning its safety - not just"poor sales". Within the first 2 years on the market, the vaccine caused 640 emergency room visits, 34 life-threatening reactions, 77 hospitalizations, 198 dis-abilities and six deaths. Hundreds of lawsuits resulted, and two of "IDSA's finest" were named in the largest suit, accused of negligently handling the reports of adverse reactions during the vaccine clinical trials. Had those adverse reactions been properly reported and investigated, the vaccine might not have been thrust on the unsuspect-ing public to cause MORE adverse (and deadly) reactions.

    So you see, Washington Post, there were a few missing facts in your report, which makes it unduly biased for the Infectious Disease Society of America and against Lyme patients - as well as the attorney-general of Conn. and Columbia University!

    But there always will be "missing facts" when you rely on the IDSA to educate you about Lyme disease. The individual members of the IDSA Lyme "expert" group have vested financial interests in keeping the status quo, and so their guidelines reaffirm the status quo despite overwhelming scientific evidence that they've got it WRONG!!!

    And a lot of people are suffering needlessly in the process. We would simply appreciate that journalists dig deeply enough to help advance the cause of truth, which will help set millions of us free from needless suffering, disability, and premature death.

    lymelite7 (5/16/2007) wrote:
    Another take-away message from Mr. Feifer's article "Combat Zone" is that Lyme patients do not have the right to influence the process by which our disease is researched and combated. We are too "loud" for the tastes of Dr. Wormser, the IDSA, even Mr. Feifer and the Washington Post.

    It's strange to see that other patient advocacy groups for conditions like AIDS and cancer don't have to suffer the disdain of the elitists in control of academia and the media!

    ...And to add insult to injury, state governments across America are engaged in a campaign to force ALL physicians to conform to the IDSA view of Lyme by threatening the medical licenses of doctors who currently disagree with the IDSA's "happily ever after" view of Lyme. Instead, these doctors believe the many aforementioned medical studies (by IDSA members and others) documenting both the persistence and severity of Lyme infections. ..


    vls92 (5/16/2007) wrote:
    The bottom line is that when (there) exist two polarized approaches to Lyme diagnosis and treatment every patient should be informed of the two approaches and be provided a choice.

    Rather than continue to label lyme patients as "activitists" and making this a political matter, when it is a medical matter, doctors should allow patients to make the choice, after being fully informed of all risks of all treatments. The issue is freedom of choice, after all options are fully disclosed.

    Let's get to the real issue, namely, insurance companies not wanting to pay for long-term treatment. Who is making our health choices for us? Not you, but the IDSA and your insurance company.

    If you had a brain tumor and your doctor said it was inoperable, wouldn't you get a second opinion? If the second opinion said it was operable, but you would be paralyzed, well, not such a great choice either. But, at least you would know your options and you could make a choice.

    The IDSA has effectively eliminated choice in the matter of tick-borne disease. There exist thousands of studies documenting the devastating effects of untreated tick-borne disease, yet they ignore those studies and pick and choose which studies support their theory. I strongly recommend that anyone who is concerned about their health to become proactive and not rely on IDSA guidelines which deny the reality of lyme. The other guidelines exist, yet, they are not publicized. Why is that? Take charge of your health, become informed, and don't let insurance companies and doctors tell you you do not have a choice. You do. ILADS works, IDSA doesn't. I've experienced both "treatments" and we are effectively cured because techniques of ILADS doctors.

    IDSA doctors told us we had lyme, but it wasn't serious and to just wait and see. Would a doctor tell you to wait and see what syphillis does to your body, as it is also a spirochete bacteria like lyme? I believe that could be classified as malpractice, to let an infection run rampant without treatment. Fortunately, more and more juries are agreeing.

    Lyme bacteria has the most DNA of any known bacteria. It changes form and hides in the body, in the heart, joints, brain. It is passed in utero to unborn children and is passed in blood donations. It has been found in mosquitos and biting flies. It has been found in the brains of Alzheimers patients. Frequent misdiagnoses (also) include MS, Lupus. ALS, autism, bi-polar, fibro-myalgia. It is a much larger problem than is admitted and it is time for health officials to investigate why it is increasing at such alarming rates and how to properly test and treat it, rather than to deny its existence.

    Stay tuned for an ABC News Special on the frequent misdiagnosis of lyme as "MS" and for a documentary coming out this summer entitled "Under Our Skin."

    lymelite7 (5/16/2007) wrote:
    The take-away message from Jason Feifer's article on Lyme disease ("Combat Zone") is that persistent infection with the Lyme spirochete does not exist. He relies upon the "experts" at the Infectious Disease Society of America for this conclusion.

    However, these "experts" themselves have been on the forefront of publishing medical studies documenting the survival of the Lyme bacteria past multiple rounds of antibiotics. In 1992 and 1993, Mark Klempner published two studies in the Journal of Infectious Diseases documenting how Lyme "spirochetes can survive antibiotic treatment through intracellular sequestion within fibroblasts" making them "among the small number of bacteria that can cause chronic infection by localizing within host cells where they remain sequestered from some antimicrobial agents" (1993;

    Or as he stated in the same journal"The Lyme disease spirochete . . . can be recovered long after initial infection, even from antibiotic-treated patients, indicating that it resists eradication by host defense mechanisms and antibiotics . . . several eukaryotic cell types provide the Lyme disease spirochete with a protective environment contributing to its long-term survival" (1992; 166(2):440-4).

    Or as Raymond Dattwyler (also an IDSA "expert") put it in Reviews of Infectious Diseases, 1989 11(6)S6; S1494-8, "Lyme borreliosis is a chronic infectious disease caused by the spirochete Borrelia burgdorferi."

    Or as Drs. Dattwyler and John Halperin (both of IDSA) described in the New England Journal of Medicine in 1998 (319(22): 1441-6), We studied 17 patients who had presented with acute Lyme disease and received prompt treatment with oral antibiotics, but in whom chronic Lyme disease subsequently developed." Or as Dr. Halperin wrote in Neurology in 1992 ((42):43-50), "In many instances continued infection appears to be essential for symptoms to persist, no matter how small the number of organisms, as antimicrobial therapy is generally followed by clinical improvement."

    The title of a 1990 American Journal of Medicine (88:21-26) article by the much-quoted Dr. Gary Wormser and Robert Nadelman says it all: "Isolation of Borrelia burgdorferi from the blood of seven patients with Lyme disease" four months after treatment!

    Or as Gerold Stanek (also of IDSA) put it in the British Journal of Dermatology in 2001, "The relapses she repeatedly suffered despite initially successful antibiotic treatment could be related to the observation that Borrelia may possibly be able to remain dormant in certain tissue compartments, thus escaping bactericidal antibiotic activity" (144(2):387-392).

    Or as Allan Steere, guru of IDSA on Lyme, told the American Journal of Medicine in 1995 (88:4A-44S-51S), “Similarly [as in tertiary syphilis or tuberculoid leprosy], the antigenic stimulus in Lyme arthritis would appear to be a small number of live spiro-chetes, demonstrated here by monoclonal antibodies, which may persist in the synovial lesion for years (p.494)".

    Or as Allan Steere, wrote in the New England Journal of Medicine (1990 Nov 22; 323(21):1438-44), "The likely reason for relapse is failure to eradicate the spirochete . . . This last article is one of many studies that show continuing symptoms are most likely due to persistence of the spirochete."

    Indeed, many articles have been published before AND since 1990 demonstrating the chronicity of Lyme, by members of the IDSA Lyme "team" and many other reputable scientists.

    So, are there any fact-checkers at the Washington Post?

    iamtroutscout (5/15/07) wrote:
    Your article entitled "Combat Zone" ignores the facts. Plain and simple you attack the basis of one group "The Activists" while nnot looking at the "Experts" and their basis for motivation and the research that they quoted while coming up with their guidelines.

    When the IDSA so radically changed their guideleines they based them on less than 500 studies that supported their view. Blatantly ignoring the other 18,000 published studies and reports worldwide.


  8. munch1958

    munch1958 Member

    So glad you took the time to post this! I printed it out and gave it to my husband. I'll make him read it every time he complains about my health care costs. I know from personal experience that 6 solid months on ABX did not cure me.