2nd Hand Lyme Lab warnings

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.

[rlanham]

I am sick of wasting money on physicians who cant think out side the lab paper work.
Just because they did not see a bulls eye and the test are neg they do not go any further.
Doesn't matter if you have every symptom in the book or worse.
Florida is full of these kinds of physicians.

[JackieCalifornia]

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

Why do you assume it would be easy and inexpensive?  And why do you assume the CDC knows everything?

What happens when you check the oil in your car?  The dipstick doesn't light up FULL or EMPTY:  there is a little hatched part on the bottom that you have look at to decide whether it's time for oil.  That is a judgment call.

All of medicine is a big judgment call.

The MDs who believe the CDC/IDSA view on Lyme as being hard to get and easy to cure are believers in easy and inexpensive diagnosis and treatment.  So ... how's that working out?

If you don't like the '2d hand Lyme labs' (I assume you mean labs like IGeneX), then you have the right and privilege to go to an MD who doesn't use them.  You might not like the diagnosis or the outcome, but hey, at least it was cheap.

Isn't there an old joke about somebody complaining about the poor quality of the food at an all-you-can-eat buffet, but when it was suggested that he eat somewhere else, he replied, 'Why would I do that?  Where else can I get so much food for so little money?'  You pays your money, and you takes your choice.

[motox320]

"The CDC has done hundreds of studies, using collections of well characterized specimens, to arrive at the recommendations it makes concerning the diagnosis of Lyme disease. What they recommend is the result of good science and can be trusted. However, doubts have been sowed by uninformed patient advocate organizations; such doubt are unfounded since the CDC recommendation have been verified independently and are widely accepted by various international bodies. Although diagnostic procedures can always be improved, no test can -- or should-- demonstrate Lyme disease in individuals who don't have the disease, but simply think that they do based on the erroneous information that they get from unreliable internet sources.

Neither the CDC nor the FDA are "police" organizations. They are constrained to operate under rules and regulations mandated by the Congress. "


My point is, I know somoene who send 5 of the same samples to the same lab and got 5 different test results back.

I have the paper work to prove it.

I am a HUGE lyme supporter, and have it myself, but there is a reason why insurance companies dont cover visit, medicine.. for chronic lyme

as far as the oil on the dip stick.... its either there or not...

[motox320]

If I would of posted saying how I think the CDC ***** and the 2nd hand lyme Labs are the best, you guys would of been cheering me, because that what people want to believe.

Maybe they are right, but its been years now and they still are private.

[motox320]

"You might not like the diagnosis or the outcome"

this is what I mean, do people want to have Lyme or something?

[motox320]

http://webcache.googleusercontent.com/search?q=cache:-dKlKcQJ74EJ:www.quackwatch.org/01QuackeryRelatedTopics/lyme.html+chronic+lyme+disease+treatment&cd=2&hl=en&ct=clnk&gl=us

[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.


Provisional cases of selected notifiable diseases, United States, weeks ending December 30, 2006. Morbidity and Mortality Weekly Reports55:51-52, 2007.
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.
Caution regarding testing for Lyme disease. MMWR 54:125, 2005.
Imported malaria associated with malariotherapy of Lyme disease—New Jersey. MMWR 39:873-875, 1990.
Update: Self-induced malaria associated with malariotherapy for Lyme Disease—Texas. MMWR 40:665-666, 1991.
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.
Federal Register 61:53685-53688, 1996. To access the full text, search the Federal Register for "colloidal silver."
Consent order. In the matter of John R. Toth, M.D., before the Kasas State Board of Healing Arts. Docket No. 05-HA-79, Dec 12, 2005.
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.
Gerber MA and others. The risk of acquiring Lyme disease or babesiosis from a blood transfusion. Journal of Infectious Disease 170:231-234.1994.
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.
Grann D. Stalking Dr. Steere over Lyme disease. New York Times Magazine, June 17, 2001.
Warner S. State official subpoenas infectious disease group. The Scientist, February 7, 2007.
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.
Associated Press. Lyme vaccine pulled off market. Feb 26, 2002.
Abbott A. Lyme disease: Uphill struggle. Nature 439:524-525, 2006.
McSweegan E. The Lyme vaccine: A cautionary tale. Epidemiology and Infection 135:9-10, 2007.
Nigrovic LE, Thompson KM. The Lyme vaccine: a cautionary tale. Epidemiology and Infection 8:1-8, 2006..
Lathrop, SL and others. Adverse event reports following vaccination for Lyme disease. December 1998-July 2000. Vaccine 20:1603-1608, 2002.
Barone SR and others. Parental knowledge of and attitudes toward LYMErix (Recombinant OspA Lyme vaccine). Clinical Pediatrics 41:33-36, 2002.

[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.
============================================================
[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.

[JackieCalifornia]

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

==========================================================
"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.  
=========================================================
"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.
======================================================
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]

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?

[motox320]

I am 26, was a standout college athlete, mma fighter ect. 170 lbs all mucsel, could run like the wind, was stronger than a 300lb man.

In 2006 I got real sick with swollen lymth nodes in my groin.  Then summer of 07 left sided facial numbness constant, then a breathing problem, then summer 2009, developed chronic all day long everyday migraine, all with no answers. Many many MRI's, and blood tests. ALL normal.

Then Igenex says I have Lyme because of band 31 and 41 being +.  The doctors at the local unviversity say no, you must have 5 bands.

So what the heck? Then I read about Igenex, and found all this documintation about bad tests. Then I personal know someone who sent 5 samples that all came back different.

So can I trust this lab? no...

I am going to send them 3 more samples of my own blood with differnt names on them and see how it comes back. If they come back different at all, this is obvious a major problem.

Problem number 2. The CDC is a good group, they want to HELP people. They state that these Lyme labs are just money making bogus.

I believe the Lyme labs want to help, but I dont think they have the best tests. Why dosent Igenex post there validation studies, so we all can see them?

[kamrynkade]

You've gotten a lot of good advice from Jackie.
Just a couple of comments...the CDC does not care about diagnosis they care about REPORTING.  They set these guidelines as a way to filter the reports they get from labs.  

When Lyme was first being studied by Allen Steere (I know...groan), he said that if a patient tests positive on band 41 and exhibits symptoms they should be treated as having lyme.  This has of course changed.  He realized that a lot of healthy people test positive on 41 and that this would confuse doctors.  

Don't assume your doctor is smarter than you just because they have MD behind their name.  They read their little journals and get their memos from whatever "society" they belong to and that is the extent to which they keep up to date on things.  It's very rare to find a doctor that is truly on the forefront of any disease.  

Anyways, that's a bit off topic.  If you don't trust Igenex, you can try Clongen.  He uses a kit from the CDC so that should alleviate any concerns you might have.  You can also talk to him on the phone and he will address any concerns you have.  He has a PhD from Berkeley and has been dealing with tick borne diseases for a long time.  He is a scientist, not an MD which is more reassuring because he actually does research.  The results will show whether you are CDC positive or not.  But, more importantly I like Clongen results better than Igenex because they give you an actual number beside each band.  The (ind.), +, ++, and +++ from Igenex drives me bonkers.  

Also a note about your friend who sent 5 samples and had them come back all different.  I've had 3 tests done with Labcorp and all 3 came back different.  It's the nature of the testing combined with the course of the disease.  

[kamrynkade]

Also, maybe all of our doubts will be quelled soon.  Hopefully there is a new more accurate test coming soon:

http://www.sciencedaily.com/releases/2010/06/100618141631.htm

[wonko]

I think that the real issue, as noted by some above, is that none of the testing is sufficient.  That is why Lyme needs to be a clinical diagnosis made after other conditions are ruled out.  For me, finding a doctor I trust meant more than any single test result.

[motox320]

"
Also a note about your friend who sent 5 samples and had them come back all different.  I've had 3 tests done with Labcorp and all 3 came back different.  It's the nature of the testing combined with the course of the disease.   "

The friend send all from the same blood draw.

Of course your were different, they were differnt blood draws.

[22dreams]

If you want to talk about testing. My sister tested CDC positive in 2006.
Her doctor stopped treating in my state and she went without Treatment for awhile and she worsened without treatment.

Fast forward to 2009, she was tested again, this time only positive on band 41.
Regardless, she was so debilitated---bedridden actually --
that the Md put her on IV antibiotics. As a herx reaction, several so-called classic bull's eye rashes appeared on her legs-- for the first time as she had never presented with the bull's eye rash previously (or hadn't seen one).

Any doctor with 1/2 a brain would say if you have the rash, you have lyme. But the blood test told a different story. So: do you then believe the test? not logical.

Looking to tests with lyme, debating testing is pointless.

the point of this thread really seems to be discrediting one particular lab.
You will find that variables exist with any lab, including WHO is conducting the tests, as not all lab technicians, no matter the lab are created equal.

the fact is: lyme tests, no matter which ones, cannot be used to say "no you don't have lyme". They are too inaccurate no matter who is conducting the tests. Not enough is KNOWN about lyme to rely on mere Antibody tests. Tests, as in the case of my sister, show nothing much. She turned a corner with that IV treatment, thank God.
and thank God she found a doctor who didn't follow Surveillance criteria (CDC criteria intended for demographic purposes and not treatment protcol) but rather personal clinical judgment.

so: my warning goes out about all testing. No matter the lab.
A negative test no matter which lab does not mean that you don't have lyme. It's a horrible thing that more research hasn't been done over the last several decades to improve the quality of diagnosis and treatment.

We can debate current testing until the cows come home. It won't change the fact that there are people who have lyme who will never test positive until the medical community does more to get out of the lyme dark ages.

[22dreams]

We basically are using the same testing methods as we did in the 90s.

The FDA conducted their own survey back in 1999, similar to your friend's.
Different manufacturers' test kits were used where inter-laboratory and intra-laboratory results showed poor agreement. I believe this was further backed up by study from Hunfeld(?) published in 2002.

This is nothing new.

and this is why the FDA released the statement that standardized tests should be used only to support a clinical diagnosis of Lyme disease, not as the primary basis for making diagnostic or treatment decisions.

Further, Stricker and Johnson published a 2007 review of North American case control studies of commercial two tier Lyme testing which oft times is touted as a gold standard of lyme testing.

"The two tier testing system endorsed by the CDC has a high specificity 99% percent and yields few false positives but the test have a uniformly miserable sensitivity 56%.
They miss 88 of every 200 patients with Lyme disease.

An updated analysis including more recent studies found that the sensitivity of the two tier test system was even worse at 46% and this sensitivity is far below the 95% cutoff required for an accurate diagnostic test and much worse than the 99.5% sensitivity of commercial HIV testing...."

[motox320]

What 2 teir test are you reffering to?

[motox320]

"Also, maybe all of our doubts will be quelled soon.  Hopefully there is a new more accurate test coming soon:

http://www.sciencedaily.com/releases/2010/06/100618141631.htm "

This test is only good for ealry stages of Lyme, just a dfferent protocol, wont help those with late lyme

[wonko]

The two tiered testing is theELISA screen followed by the Western blot.  This is the testing protocol endorsed by the IDSA.  Under the guidelines the W. Blot is only done if the ELISA is positive.

[rlanham]

What really is the point to the conversation. any one doing a bit of personal research, It is a well known fact that these spirochetes hide in different parts of your body and can be dormant during testing time.

All physicians do is look at the blood work and that is it. If it is negative they go no further and most consider you hypochondriac.

It is the treatment or lack of treatment why thousands are dying from Lyme's with out any medical care. Such as those who are positive for band 41.
All testing procedure is null and void if you don't catch the bacteria in it's exposed state.
This should be a red light and Grey area of reality for physicians.
They should know these areas and treat them as relevant as possible.

Physicians are in denial when it comes to Lyme and it's many faces.
If they had a medical team that had the medical knowledge of looking out side a box of limitations and clouded windows,
maybe concentrate on some visuals like  their patience symptoms,  more people would get help.

If some has multiple symptoms physicians want you to come in for one of each symptom at a time. Then they treat each symptom with a pill..? and miss diagnose by calling it something else.

Most Physicians just don't seem to think on their own when it comes to this illness. It does not mean they are bad Doctors.
Just physicians  lacking needed knowledge in this area of medical needs.
When you walk in with tic's that cause the illness and some one works in a environment, with co workers positive for lymes. &  All symptoms are evident, you would think that the knowledge of false neg's would be considered.
And any other research on behalf of patients would be a plus for every one with a lymes neg test. Don't stop there, get on with the show.

How can a physician tell you they can not help you and act like it is your fault? it is done all the time. Physicians cop an attitude.

If a test is neg, look for another method enabling a search for the problem, don't just say the CDC "only requires this or that."
It appears that the DR's are just doing enough to cover there ***.

A neg test is nothing but a red light on both side of the cross walk at the same time if you ask me.

The physicians either just stop and go no further, or become alerted of a serious problem going on and search for the problem.
I can tell you that most of the physicians are very negative them selves when it comes to this illness, if a test is negative.
They cant help you at all. End of story.

If they can't figure something out, they say it is in your head, or they can't help you.

Easy way out if you ask me, and that's what you "don't get" for all the money you pay for nothing in return.
This disease is serious and not all people react to it the same way, but there are basics.

Where are the physicians that deal with this disease any ways?
No list of lymes disease specialist on line or medical directories.?
Then there is the monetary concerns, are these physicians affordable to out of pocket payees? because insurance co. don't want to pay for it?
$875 and hour from a lymes physician that is researching lymes? no medical care in return. At least he is doing research and it does cost a lot to research illness. Hope he finds a cure for it. Hope he gets sponsors too.

We need a public medical list of Lyme literate physicians no matter where they are in USA.
I hope everyone trying to beat this illness will do it with success.
If there is any one that can inform me on any medical information, or homeopathic care for treatment of Lyme please let me know, it will be well received.

[kevieb]

i'm kind of curious as to how the CDC knows that the little blood-sucking vectors that carry lyme know where the state lines are and how they know not to cross them?  if they can get this much info from a little tick---how come they can't diagnose the stupid disease better????