2nd Hand Lyme Lab warnings

[motox320]

I may have Lyme, but I am not CDC positve.

I do agree that the CDC test is right if you have a positive result, but may not be always right if negative.

I was negative on the CDC.

My LD, send a blood sample from me to an un-named Lyme lab. It came back postive based on there results.

I questioned this.

Here is the rest of the story.

Another person took 5 samples of there own blood at one setting, and sent them out to this place from different locations.

The tests came back different.  There is something wrong as this was all from one person, same blood draw time.

I do now not trust 2nd hand Lyme labs.

Some of them may be good. I am a Lyme supporter, dont get me wrong.

But if these labs are so good, the CDC could easily do a inexpensive study of these tests and vilidate them.

As the CDC there test also says they should not be used as diagnostic purposes.

There is a reason you have to pay cash 1st and most insurance compaines will not pay for these tests.

Also, why insurance wont pay for chronic Lyme, beacuse it cant be proved.

In end, the CDC needs a better test, and I think many of these 2nd hand Lyme labs are not accuate at all.

[JackieCalifornia]

In my view, the real problem is that the docs and scientists aren't working together, and that hurts us, the patients.  All of us.

The link you posted is a sad collection of bluster intent on labeling truly ill people as suckers or wackos.  I don't know if you mean to endorse that view, but you're entitled to your opinion.  I just don't agree with the statements made in that article. It's a free country.

[motox320]

Im not trying to argue or get any upset.

But you saying that link is bluster intent

The whole article is referenced from medical books. Yes the purpose of the article is to make people look wacko which you aggeed with. BUT, then you should agree that the whole purpose of all the other Lyme sites is too make you think you have Lyme.

Its sad, Lyme needs to be studied more, but as far as that artilce
it was referenced good.


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Barbour AG. Lyme Disease: The Cause, the Cure, the Controversy. Baltimore: Johns Hopkins University Press, 1996.
Aronowitz R. Making Sense of Illness: Studies in Twentieth Century Medical Thought. New York: Cambridge University Press, 1998.
Krause PJ and others, Tick-Borne Study Group. Reinfection and relapse in early Lyme disease. American Journal of Tropical Medicine and Hygiene 75:1090-1094, 2006.
Seltzer EG and others. Long-term outcomes of persons with Lyme disease. JAMA 283:609-615, 2000.
Gardner P. Long-term outcomes of persons with Lyme disease (editorial). JAMA 283:658-659, 2000.
Sigal LH and Hassett AL. Contributions of societal and geographical environments to "chronic Lyme disease": The psychopathogenesis and aporology of a new "Medically Unexplained Symptoms" Syndrome. Environmental Health Perspectives 110:607-611, 2002.
Rusk MH, Gluckman SJ. Serologic testing for Lyme disease. When—and when not—to order, and how to interpret results. Consultant 38:966-972, 1998.
FDA Public Health Advisory: Assays for antibodies to Borrelia burgdorferi; limitations, use, and interpretation for supporting a clinical diagnosis of Lyme disease. July 7, 1997.
Klempner MS and others. Intralaboratory reliability of serologic and urine testing for Lyme disease.American Journal of Medicine 110:217-219, 2001.
Tjernberg I and others. C6 peptide ELISA test in the serodiagnosis of Lyme borreliosis in Sweden. European Journal of Clinical Microbiology and Infectious Disease 26:37-42, 2007.
Philipp MT and others.. Serologic evaluation of patients from Missouri with erythema migrans-like skin lesions with the C6 Lyme test. Clinical and Vaccine Immunology 13:1170-1171, 2006.
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Wormser GP and others. The clinical assessment, treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clinical Infectious Diseases 43:1089-1094, 2006.
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Barrett S. Lyme disease quack arrested. Casewatch, June 30, 2009.
Klempner MS.Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. New England Journal of Medicine 345:85-92, 2001.
Attorney General Montgomery stops Medicaid fraud and returns $2.3 million to state. Press release, June 19, 1995, Attorney General of Ohio.
Kelly F. Lyme disease alleged to be false diagnosis. Ann Arbor News, June 19, 1998.
Whelan, D. Lyme Inc.: Ticks aren’t the only parasites living off patients in borreliosis-prone areas. Forbes. March 12, 2007.
Ettestad PJ and others. Biliary complications in the treatment of uncomplicated Lyme disease. Journal of Infectious Disease 171:356-361, 1995.
Patel R and others. Death from inappropriate therapy for Lyme disease.Clinical Infectious Disease 31:1107-1109, 2000.
Lightfoot RW Jr and others. Empiric parenteral antibiotic treatment of patients with fibromyalgia and fatigue and a positive serologic result for Lyme disease. A cost-effectiveness analysis. Annals of Internal Medicine 119:503-509, 1993.
Mulhall JP, Bergmann LS. Ciprofloxacin-induced acute psychosis. Urology 46:102-103, 1995.
McSweegan E. Why people go fishing for drugs. Washington Post. August 27, 2002, pp. H02.
Borg R and others. Intravenous ceftriaxone compared with oral doxycycline for the treatment of Lyme neuroborreliosis. Scandinavian Journal of Infectious Disease 37:449-454, 2005.
Ogrinc K and others. Doxycycline versus ceftriaxone for the treatment of patients with chronic Lyme borreliosis. Wiener klinische Wochenschrift 118:696-701, 2006.
Kaplan RF and others. Cognitive function in post-treatment Lyme disease: do additional antibiotics help? Neurology 60:1916-1922, 2003.
Walsh CA and others. Lyme disease in pregnancy: case report and review of the literature. Obstetrical and Gynecological Survey 62:41-50, 2007.
Woodrum JE, Oliver JH Jr. Investigation of venereal, transplacental, and contact transmission of the Lyme disease spirochete, Borrelia burgdorferi, in Syrian hamsters. Journal of Parasitology 85:426-430, 1999.
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Horowitz HW and others. Perinatal transmission of the agent of human granulocytic ehrlichiosis. New England Journal of Medicine 339:375-378, 1998.
Cooper JD, Feder HM Jr. Inaccurate information about Lyme disease on the internet. Pediatric Infectious Disease Journal 23:1105-1108, 2004.
Sood SK. Effective retrieval of Lyme disease information on the Web. Clinical Infectious Disease 35:451-464, 2002.
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Santaniello G. A schism over treatment philosophies puts a Connecticut pediatrician's license on the line. Northeast Magazine. Sept 17, 2006.
Robinson, MB. Senators urge haste on Lyme vaccines. Bergen Record, Dec 7, 1997.
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Lathrop, SL and others. Adverse event reports following vaccination for Lyme disease. December 1998-July 2000. Vaccine 20:1603-1608, 2002.
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[JackieCalifornia]

Just because a lot of people say the same thing doesn't make it true.

Remember the childhood story of the little boy who cried out when no one else would speak the truth:  'But the Emperor is naked!'  Too many MDs have staked their careers and reputations on Lyme being hard to get and easy to get rid of, and to their shame, they refuse to reconsider in the face of continually mounting evidence.  

Have you seen the tapes of nationally televised news conference from the early 1980s when AIDS was first recognized?  The CDC wheeled out a senior white-coated MD in front of the TV cameras, intending to quell panic by stating sonorously that no one could get AIDS unless gay or Haitian.  (Uh, wrong.)  I saw the news conference and remember thinking what a stupid thing it was to say, because microbes don't care who or what you are.  

Ignac Semmelweis was the 19th century MD ridiculed when he pointed out that washing hands between patient exams would stop the spread of puerperal (child-bed) fever in maternity wards.

There are other stories that show the triumph of ego and ambition and stubborness over careful observation -- in other words, stories that show medical personnel are just human like the rest of us.  The problem arises when they forget that they don't yet know everything, and that Mother Nature still has a few tricks in her bag.

I have MDs in my family and among my close friends, and I know how hard they study and work and worry over the work they do; I have had MDs save my life, sometimes after other MDs messed up terribly.  It is a very hard job, and it is human nature to cling to one's sense of infallibility in order to hold onto the courage to wield the power of life and death over fellow humans.  

Unfortunately that clinging has gone too far with regard to Lyme, and the tidy little box the CDC and IDSA have tried to put Lyme into just won't stay shut.  Lyme keeps spreading geographically and engaging in intriguing little tricks to avoid our immune systems and usual medical care.

My beef is with those too arrogant to rethink their positions as more facts arrive.  That list of medical articles above is a chroncile of misdeeds and errors.  Someday, soon I hope, this will be sorted out, but not before many lives have been affected and some destroyed.  The witch hunt ongoing by so-called mainstream medicine is not helping (and is actually hampering) the process of understanding and treating Lyme and associated diseases.

From the Hippocratic oath:  "I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone."  MDs must follow their own judgment in doing no harm, but as MDs are human like the rest of us, they make mistakes ... and one of those mistakes is to refuse to reconsider a position when additional information arises.  

'First, do no harm.'  It's a good rule to live by.

[JackieCalifornia]

One last comment:  

You say above:  "... you should agree that the whole purpose of all the other Lyme sites is too make you think you have Lyme."

No, the purpose of the vast majority of Lyme websites that are contrary to the CDC/IDSA approach is to present commentary to fill out the picture of Lyme and to provide information and analysis not presented by the CDC/IDSA crowd.

There's a saying that if the facts are against you, argue in favor of the established rules; if the established rules are against you, argue the facts; and if both the rules and the facts are against you, attack the other side. That's exactly the approach CDC/IDSA bunch tend toward:  attacking the ILADS bunch instead of considering the science and the facts as they continue to develop.

[motox320]

Thats what you believe, which is fine.

All the facts and studies are back buy the CDC and government, they are a reliable source.

Seltzer and Shapiro (10) showed that, under circumstances where the
theoretical incidence of Lyme disease is 1%, and using what one would
consider to be an excellent diagnostic test with 95% sensitivity and 90%
specificity, the predictive value of a positive test (the percentage of persons
with disease among all those having a positive test) is only 8.7%. They also
showed that, of all tests that were positive for Lyme disease under the same
conditions, 91.3% were found to be falsely positive. Once again, this applies
to a situation where the theoretical incidence of Lyme disease is 1% -- an
incidence far greater than even the maximum projected for the U.S. as a
whole (0.09%) and for major endemic areas (0.4%). If one assumes an
incidence of disease of 10% and 50%, the projected positive predictive values
would rise to 51.4% and 90.5%, respectively. Based on these observations,
Seltzer and Shapiro emphasized “the need for judicious use of diagnostic tests
to ensure that the predictive value of a positive test is high.” If a test is used
in groups of patients with a high probability of having Lyme disease (e.g., in
patients with objective physical signs commonly associated with Lyme
disease), its predictive value will be high. However, if it is used in groups of
patients with nonspecific symptoms or in situations where there is a low
probability of having Lyme disease (e.g., in patients from areas where Lyme
disease is relatively rare or in areas where the Ixodes ticks that transmit
Lyme disease are not found), its predictive value is low. Porwancher attests
to the fact that the long-used -- and often much maligned-- conventional two-
tiered test for Lyme disease, when applied under conditions where the pre-
test risk of Lyme disease is high, indeed provides excellent and reliable
results (11).

[JackieCalifornia]

You say:

"All the facts and studies are back buy the CDC and government, they are a reliable source."

On what do you base that conclusion?  The government, like an organization, is made up of mere humans like you and me, who have the usual pressures to succeed in their chosen fields, and who have the usual human flaws of ignorance, stubborness, arrogance and all the other human sins.  The only difference between govt functionaries and the rest of us is:  they don't generally get fired for errors or incompetence.  What they say goes, without accountability.  That is precisely why turning over any function to the government is the worst way to try to accomplish it well ... or at all.  The CDC is government-funded, and for all intents and purposes operates just like the government:  unaccountable bureaucrats.  Yes, there are good bureaucrats as well as bad ones (just human after all!), but the bad ones seldom get fired or outed.  I suppose it's a good thing for the rest of us that they retire with fat pensions at relatively young ages:  fewer years to make mischief.

And remember, it was the CDC who said you couldn't get AIDS if you weren't Haitian or gay.
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[Quoted below in sections is your paste up from above, followed by my comments which are preceded by arrows ===>]

"Seltzer and Shapiro (10) showed that, under circumstances where the
theoretical incidence of Lyme disease is 1%,"

==> the more insignificant you assume the problem to be, the less of a problem it is.  On what do the authors base their 'theoretical' incidence number?  Even the CDC says that Lyme disease is the fastest spreading vector-borne disease in the US, found in virtually all 50 states just a few years after allegedly being confined to a few NE states.  Bugs don't read maps, obey state lines or follow CDC pronouncements.
=========================================================
"... and using what one would consider to be an excellent diagnostic test with 95% sensitivity and 90% specificity, the predictive value of a positive test (the percentage of persons with disease among all those having a positive test) is only 8.7%."

==> From wiki:  "The serological [blood] laboratory tests most widely available and employed are the Western blot and ELISA. A two-tiered protocol is recommended by the CDC: the sensitive ELISA test is performed first, and if it is positive or equivocal then the more specific Western blot is run.[87]  The reliability of testing in diagnosis remains controversial,[2]  however studies show the Western blot IgM  has a specificity of 94–96% for patients with clinical symptoms of early Lyme disease.[88][89]  The initial ELISA  test has a sensitivity of about 70%, and in two tiered testing the overall sensitivity is only 64% although this rises to 100% in the subset of people with disseminated symptoms, such as arthritis.[90]  [NOTE THIS:]  However, ELISA  testing is typically done against region specific epitopes and may report a false negative if the patient has been infected with Borrelia from another region than that in which they are tested.[91] Erroneous test results have been widely reported in both early and late stages of the disease. These errors can be caused by several factors, including antibody cross-reactions from other infections including Epstein-Barr virus and cytomegalovirus,[92] as well as herpes simplex virus.[93] The overall rate of false positives is low, only about 1 to 3%, in comparison to a false negative rate of up to 36% using two tiered testing.[90] Polymerase chain reaction (PCR) tests for Lyme disease have also been developed to detect the genetic material (DNA) of the Lyme disease spirochete. PCR tests are susceptible to false-positive results from poor laboratory technique.[94] Even when properly performed, PCR often shows false-negative results with blood and CSF specimens.[95] Hence PCR is not widely performed for diagnosis of Lyme disease. However PCR may have a role in diagnosis of Lyme arthritis because it is a highly sensitive way of detecting ospA DNA in synovial fluid.[96] With the exception of PCR, there is currently no practical means for detecting the presence of the organism, as serologic studies only test for antibodies of Borrelia. High titers of either immunoglobulin G (IgG) or immunoglobulin M (IgM) antibodies to Borrelia antigens indicate disease, but lower titers can be misleading. This is because the IgM antibodies may remain after the initial infection, and IgG antibodies may remain for years.[97]"

My conclusion:  Testing is not perfect, due to cross-reactivity with microbes other than Lyme and to the large number (I've read it is around 100) of different strains of Lyme, most of which cannot currently be tested for.

Over-reliance on unreliable tests without regard to clinical symptoms reported/observed in patients will therefore produce unreliable diagnoses.  Contrary to the CDC/IDSA, LLMDs take the approach that the tests are interesting and useful but are not the last word.  It's called 'practicing medicine' and 'using one's judgment.'
==============================================================
"... showed that, of all tests that were positive for Lyme disease under the same
conditions, 91.3% were found to be falsely positive. Once again, this applies
to a situation where the theoretical incidence of Lyme disease is 1% -- an
incidence far greater than even the maximum projected for the U.S. as a
whole (0.09%) and for major endemic areas (0.4%)."

==> This is an unwarranted conclusion, based on the CDC-documented spread of Lyme throughout at least North America and Europe.  Columbia University Medical Center in NYC stated in 2007:  "Lyme disease is the fastest growing vector borne, or organism-transmitted, disease in the United States ..., with the annual incidence rate over the last 3 years increasing by 15 percent."

"If one assumes an incidence of disease of 10% and 50%, the projected positive predictive values would rise to 51.4% and 90.5%, respectively. Based on these observations, Seltzer and Shapiro emphasized “the need for judicious use of diagnostic tests to ensure that the predictive value of a positive test is high.” If a test is used
in groups of patients with a high probability of having Lyme disease (e.g., in
patients with objective physical signs commonly associated with Lyme
disease), its predictive value will be high. ..."

===>  Therefore if you can see the tick and the bullseye rash, then the test is useful.  If no tick or rash is seen, then the test is not useful, so ignore the symptoms.  The problem here is that the ticks are so small they can be (and are) easily missed, and because the incidence of those with Lyme who do not see or recall a bullseye rash is unknown, there is a real possibility of significant underdiagnosis.