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]

Okay, okay, in my message above, I was mean to government employees, of which I have plenty in my family and have heard years and years of stories about the regrettably non-productive co-workers that seem to be everywhere forever and ever.

There are good government employees, but the good ones are burdened with the bad ones, and there's no excuse for protecting people who don't perform.  Esp. when we the taxpayers are paying them.

So apologies to all the GOOD government workers (you know who you are), and all the rest of you:  try harder, okay?

[JackieCalifornia]

[the message was too long, so here is the second part -- the first part is posted above]

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"However, if it [the blood test] 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."

==>  Thus, they say, since Lyme disease is rare (which it is not) and Lyme ticks are not found in many areas (which is incorrect), the tests are not useful anyway, so why perform them.  Many Lyme patients have been told 'We don't have Lyme around here', 'You can't have Lyme because you didn't get the rash or see a tick' and other pronouncements.  It is amazing to me how flat assertions like those of the CDC are quietly accepted by the rest of the medical community, but the MDs I know are busy and are inclined to take the word of the CDC and IDSA on matters like this.  Understandable, but too bad for those of us who are ill.  
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"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)."

==>See the qualifier there?  "...when applied under conditions where the pre-test risk of Lyme disease is high ...."  That means that the test is quite useful for diagnosis, but only for people (1) who live in the Northeast where Lyme is acknowledged to exist (but not the rest of the country), (2) who saw the tick (which is the size of a poppy seed and can lodge on the scalp or other unseen place and then fall off unnoticed), and (3) got the bullseye rash.  If you raise the bar high enough, no one will be able to jump over it.  That is why so many on this site and others report being told by their MDs "It can't be Lyme -- we don't have Lyme here", or "If you didn't see a tick or a rash, you can't have Lyme."

Shapiro and his crowd are the ones whose reputations would be shattered if they confess to error.  I look forward to that day.
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Oh, and one more response. You said above:  "The whole article [pasted in the previous post] is referenced from medical books. ... Its sad, Lyme needs to be studied more, but as far as that artilce it was referenced good."  

Do you know the phrase:  "Even the devil can quote Scripture"?  

Everybody knew Semmelweis was wrong about child-bed fever, too, and think of Drs Marshall and Warren, who received the 2005 Nobel prize in medicine for determining that the bacterium H.pylori cause stomach ulcers, not 'stress', as MDs had been saying for decades.  Medicine requires conflict in order to progress, and the only shame is when MDs shy away from doing that hard work for fear of rocking the boat.

I agree with your inclination to challenge what you are being told about Lyme, but your analysis should not simply assume that both sides are lying self-promoters.  Skepticism is in order all around, but not condemnation, until reason for condemnation is found.  You'll have to make decisions about your course of treatment, which is always difficult to do, given the conflicting information that's out there.  It's your health, so be careful out there.  Best wishes --

[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.
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"... 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.'
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"... 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.

[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]

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.

[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.