We all know this test is unreliable but I`m looking for proof, I know it`s out there but I am hoping someone could lead me in the right direction.
Here`s the scoop, I`m a Federal employee that was infected on a military base in New Jersey in 1992. Since then, I have tested positive for Lyme on a number of occasions and also the co-infections Babesiosis and Ehrlichiosis. I have an approved Federal workmens compensation claim.
In this time frame my LLMD`s were using IGeneX labs and my employer was paying for these tests, now they stopped paying for IGeneX and set a spending limit of $30 per test. What they are trying to do is force me and others into using the dreaded ELISA test.
In the 15 years that I`ve been dealing with tick borne diseases the Federal Government workmans compensation labor board never had any guidelines on these illnesses, all this time they`ve been grabing at straws, that`s because none of them were ever educated about tick borne diseases and never will be. Only now they are trying to dictate what is Lyme disease and what`s the best method of testing.
As I tried to explain to them if it were not for IGeneX I would have been out on permanent disability along time ago at the tax payers expense. Federal civilian employees that will become infected with tick borne will be forced into using this useless ELISA and the employees like myself that have been infected for a long time, well, they are going to try and bury us 6'under.
This was the case for a former co-worker of mine, Jim M was infected the same year as me at the base. Our stories were identical, we both had to fight the Feds about our compensation claims and we both won our appeals. We both were on the IV PICC line multiple times and both of us sustained physical and cognitive impairment. Jim M also suffered from heart block, he went out on permanent disability in 2002 and moved to PA.
The last time I spoke to him was by e-mail that September, he told me his health was failing him and told me to keep fighting for what`s right. I stayed on long term ABX before and after Jim retired but I took for granted he was doing the same, I was wrong.
My guess is Jim was forced to use the ELISA test and of course his test came back negetive because he, at the age of 48/49 was then diagnosed with Alzheimers. Jim was lead down the wrong road and payed the ultimate price for it, he died March of last year due to heart failure. He was my age, 50. Jim did not have Alzheimers and it was the Lyme bacteria that took his life.
I had written Jim`s and my Congressman and told them this sad story and explained how this BS useless ELISA test should be taken off the market before it claims the lives of others. Sorry for the ramble but I had to tell everyone this story.
The reason why I`m looking for information about the unreliable ELISA test? A) Washington is sending a labor represetitve to talk to me this Monday 4/9 about my Lyme disease claim and B)I need to go back to my doctor, I`ve been off ABX for the last 15 months and my symptoms are getting worse again. Any information provided will be greatly appreciated, God Bless. POP
Posts: 57 | From N.C. | Registered: Jun 2003
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
So sorry that this has happened and very sorry for your friend who died. I wonder if he is listed on the lyme memorial site? If not, could you let them know to list him please so that accurate statistics of the death toll can be gathered? http://www.lymememorial.org/
Apparently John Hopkins does not think the ELISA is a good test. Follow the links here and then you might want to do a further search for ELISA on lymenet. I haven't really followed this discussion because I've had no reason to need to rely on the ELISA but I think it will be helpful. http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=038973
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Two Areas:
1. Diagnosis/Testing a. do a search here for ELISA, and see if there are any citations (not lymenet opinions, but research) b. do a google for ELISA reliability (or ELISA specificity, or ELISA non-reliability )lyme to see if any science articles are available. c. pm Lymetoo for a copy or link to Dr. C/Mo who may have info on ELISA d. one posting from here: hope this link works: The College of American Pathologists agrees too - they wrote that "the sensitivity and specificity of the currently used tests for Lyme disease are not adequate to meet the two-tier test approach being recommended."
a. Get copy of ILADS guidelines b. Check out information at jemsekspecialty.com c. check Burrascano guidelines d. search http://canlyme.com for ELISA articles e.Here is one article:
Clinical Infectious Diseases � �2007;44:1135 � 2007 by the Infectious Diseases Society of America. All rights reserved. 1058-4838/2007/4408-0024$15.00
� � �TO THE EDITOR-I read with interest the recently revised Infectious Diseases Society of America guidelines for the diagnosis and management of Lyme disease [1]. Several significant inaccuracies were noted.
� � �The statement was made that "there is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease" [1, p. 1094]. This is clearly contradicted in a report by Phillips et al. [2], in which Borrelia burgdorferi bacteremia was confirmed using fluorescent antibody immunoelectron microscopy in 91% of 47 symptomatic patients who had experienced relapse after receiving oral and intravenous antibiotic therapy. This research was, in fact, cited by Klempner et al. [3] in the "Laboratory Studies" section of their report; however, the actual point of the article seems to have been missed-namely, that organisms may persist despite "standard therapy." Persistent or relapsing symptoms may, therefore, be due to active infection rather than to slow resolution of inflammation, and this may be the basis for some of the panel's observations that a second course of treatment may be needed for some patients.
� � �Second, the guidelines state that "there is no convincing evidence in North America for the persistence of B. burgdorferi in the skin of humans after treatment with antibiotic regimens known to be active against B. burgdorferi in vitro" [1, p. 1117]. Although reported from Europe, the findings of Hunfeld et al. [4], in which repeat skin biopsy cultures were still positive after treatment, suggest that the same phenomena could be observed in North America, particularly because the in vitro sensitivities that they observed did not indicate resistance on the basis of increasing MICs.
� � �Third, the statement is made that, "because of a lack of biologic plausibility, lack of efficacy, [and] absence of supporting data ... the following are not recommended for treatment of patients with any manifestation of Lyme disease: ... benzathine penicillin G, ... and others" [1; p. 1094]. This is contradicted by Dr. Steere's own data [5, 6], in which benzathine penicillin G was used successfully in the treatment of established arthritis. Although the success rate appeared to be modest (35%), therapy with benzathine penicillin was clearly more effective than placebo, which was associated with no improvement (P < .02). Therefore, some patients may respond to this treatment. Whether this therapy can be applied to other extra-articular manifestations of Lyme disease should be studied.
� � �Fourth, the specific recommendations regarding the use of oral doxycycline omitted the important issue of reduced bioavailability when the drug is coadministered with free calcium. This could explain the apparent "failure" of tetracycline treatment in some patients who were not advised to restrict calcium intake for several hours before and after the drug's administration.
Acknowledgments
� � �Potential conflicts of interest. � � A.A.P: no conflicts.
References �1. �Wormser G, Dattwyler RJ, Shapiro ED, et al. The clinical assessment, treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis 2006; 43:1089-134. First citation in article | Full Text | PubMed 2. �Phillips SE, Mattman LH, Hulinska D, et al. A proposal for the reliable culture of Borrelia burgdorferi from patients with chronic Lyme disease, even from those previously aggressively treated. Infection 1998; 26:364-7. First citation in article | PubMed 3. �Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med 2001; 354:85-92. First citation in article | PubMed | CrossRef 4. �Hunfled KP, Ruzic-Sabljic E, Norrid D, et al. In vitro susceptibility testing of Borrelia burgdorferi sensu lato isolates cultures from patients with erythema migrans before and after antimicrobial chemotherapy. Antimicrob Agents Chemother 2005; 49:1294- 301. First citation in article | PubMed | CrossRef 5. �Steere AC, Green J, Hutchinson GJ, et al. Treatment of Lyme disease. Zentralbl Bakteriol Mikrobiol Hyg [A] 1987; 263:352-6. First citation in article | PubMed 6. �Steere AC, Green J, Schoen RT, et al. Successful parenteral penicillin therapy of established Lyme arthritis. N Engl J Med 1985; 312:869-74. First citation in article | PubMed
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Sorry, no clear cut single piece of paper. I am sorry you have to go through this, and for the loss of your friend.
Northstar
[ 08. April 2007, 09:19 AM: Message edited by: northstar ]
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
I am sad to say that after searching for a long time I cannot find definative proof of the poor test accuracy. There is all sorts of evidence to support the observatiosn that it is poor test but all of them can be called into question since none of the studies where NIH funded or even funded by a big organization. There was a recent paper from a major university that stated that the test was only 60 or 70% accurate. The link to it is on the www.canlyme website. It is one of the headlines when you go to the site.
The testing that has been done in the Elisa test was paid for either directly or indirectly by the test manufacturer or at least the body that holds the patent for the Elisa antigens. Of course all these studies do is say how good the tests are.
EVERYONE knows how bad they are, thats why everyone is trying to make a better one (ie the C6 test, Brookhaven ospC and others) but even these guys do not give specifics as to how they say the ELISA test is crappy (and thus justify the need for a new test). There is obvioulsy a conspiricy of silence but the evidence volume is ovewhelming, yet nobody comes out and says it. In a court the volume of circumstantial evidence would be considered huge but there would be no evidence that has a direct link to the crime from what I can see.
Posts: 1184 | From north america | Registered: Feb 2003
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
There is all sorts of evidence to support the observatiosn that it is poor test but all of them can be called into question since none of the studies where NIH funded or even funded by a big organization.
I know this is not your opinion.
I do find it surprising that research is discredited because of the source, and not the research itself.
That is suggestive of medical arrogance, etc.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
TerryK, I`ve been meaning to list Jim`s name there for quite some time but in the last year my health has been an issue again and my employer has been putting the screws to me, the same thing they had done prior to my deceased friend. I just contacted Melanie and as soon as I hear back from her I will have Jim`s name added to the memorial.
I thank you TerryK, northstar, david1097 and Lymetoo for your support and links, I will need all the help and info come tomorrow as I do not know what they have up their sleeve.
david1097, I could not agree more, there is overwhelming evidence out there stating the unreliability of the ELISA, but of course no evidence of this from the Federal Government.
My friends last words to me: Lyme is new and odd to the Labor system, it`s not like losing a leg or arm. This is a disease that can`t be seen so keep fighting for your health and yourself, it`s not easy. I intend too! God Bless. POP
Posts: 57 | From N.C. | Registered: Jun 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hey POP,
I received your message, and would be honored to add your friend to the memorial site. I will write to you with more specific questions soon.
About your current dilemma...I have found the wealth of information at www.LymeInfo.net the best for quick references.
Please see:
Seronegativity in Lyme borreliosis and Other Spirochetal Infections 16 September 2003 ``If false results are to be feared, it is the false negative result which holds the greatest peril for the patient.''
``The most common of the antibody tests is the Enzyme Linked Immune Sera Assay test (ELISA). This test is often the first test given to Lyme patients and can only give you a very general idea of the presence or absence of anti-Lyme antibodies. The main drawback is that it is an indirect test meaning that a negative test or an absence of antibodies does not mean an absence of an active infection. Only the absence of an immune response.''
``When physicians do consider borreliosis, they often start with a screening test such as an EIA, ELISA, IFA or PCR-DNA probe. If the initial screening test is negative, many physicians tell patients they do not have borreliosis and the testing is stopped right there.''
My best to you, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
``The Committee recognizes that the current state of laboratory testing for Lyme disease is very poor. The situation has led many people to be misdiagnosed and delayed proper treatment.'' - Public Law 107-116 Signed by President Bush
posted
THANK YOU MELANIE!!!!!!!! I think the last link will do the trick, just what I was looking for. Not only is the issue addressed by the boss but it`s also directed at the Departments of Labor. These are the people that I`ll be speaking with tomorrow and they cannot argue with the boss.
Bless you Melanie, I`ll be waiting for your information for the memorial. POP
Posts: 57 | From N.C. | Registered: Jun 2003
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
in the Anthrax letters that were sent out several yrs ago the government gave Everyone ABX whether there tests came back negative or not -
Shows what they really think about this test-Jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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