I am new to Lyme, but what strikes me to be very strange is that this is that this is the only lab in the US that is considered reliable? Don't any of you find that strange?
They also have a very close affiliation with the Lyme Disease Association. In fact, I believe someone from Igenex sits on their board of directors.
I am just pointing this out, because without competition it makes it very easy for them to not take insurance, they have the full endorsement of the Lyme Disease Association. I just question, how much does money play into all of this?
Just my opinion and thoughts. It just seems very strange. Maybe some of you can shed some light on this since I am new. Thanks very much.
CA - Nick Harris, PhD Immunology President IGeneX Reference Labs; Treasurer, ILADS, International Lyme and Associated Diseases Society; Member NCCLS Committee on Lyme; Diplomate, American Board of Medical Laboratory Immunology
Posts: 21 | From Tampa, Fl | Registered: Feb 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
State University New York at Stonybrook and MDL labs are also considered good labs.
posted
There are several labs that are considered reliable and are approved to do testing. Check out Central Florida Research Inc.
-------------------- Hugz, Tugz and Health to you! Greg/bubbear http://centralfloridaresearch.com Treasure the love you receive above all. It will survive long after your good health has vanished.Og Mandino Posts: 109 | From Central Florida | Registered: Mar 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I understand why you would ask, I asked the same questions when I was new to lyme being the skeptical person that I am.
Unlike the other labs, IgeneX is highly specialized since they test only for tick borne diseases. In a nutshell, the IgeneX tests have been specifically designed to identify patients with all stages of lyme disease whereas most labs typically identify early lyme disease. There are currently 300 known strains of Borrelia but only one is typically tested for by most labs. IgeneX uses 2 strains thereby allowing more or less equal representation of all lyme antigens. http://www.igenex.com/innovations3.htm
In my opinion, they are the best lab and they have earned it. The doctors involved with that lab are very kind and I do not believe they are in it for the money.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
It's your choice..
Prime rib or a hot dog?
Keep in mind.. in Maryland alone.. EACH YEAR.. over 2 MILLION dollars are paid for cheap and lousy Lyme tests that aren't even close to being accurate.
Many of those folks with negative tests go on to be classified as having some sort of "autoimmune" disorder rather than ever learning they have a bacterial infection that could be treated.
THAT is the crime of Lyme.
Being new to Lyme you sure seem to have an extra ordinary amount of knowledge about a lot of details... and some friends we've seen here before.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by wrthster: Hi,
I am new to Lyme, but what strikes me to be very strange is that this is that this is the only lab in the US that is considered reliable? Don't any of you find that strange?
Yeah, it's REALLY strange!! You'd think as rotten as testing is, other labs would get better. But they DON'T. They're horrible. For example:
"The Western Blot is merely another antibody test. However, it is more specific than the ELISA. The test can test for 25 possible "bands" that relate to parts of Lyme or other infections.
But the routine Western Blot typically done has massive errors. In one serious test of the Lyme Western Blot testers, there was a stunning finding.
They used nine clearly infected patients and sent their blood to 18 labs. Of the IgG type of antibody, some labs were wrong. They missed 10 of 18 samples. For the IgM type of antibody, the labs were occasionally so bad they falsely reported Lyme as absent in 16 of 18 samples. (Arch Intern Med 150:761-763, 1990).
I don't know about you but I'M not sending my blood to any of these labs.
quote:They also have a very close affiliation with the Lyme Disease Association. In fact, I believe someone from Igenex sits on their board of directors.
Nick Harris volunteers a lot of time and expertise to the study of lyme disease and its detection. I think it's a credit that he is on the LDA Board! Thank goodness it's not Steere or Klempner or someone of that persuasion. There wouldn't even BE an LDA if so!
If you want to see a real piece of work of an advisory board, go check out the advisory board of the ALDF. A real treat.
It took me almost a year to pay off the ridiculous and expensive tests pushed on me by my clueless neurologist. By comparison, IGeneX was a bargain, and not only that, they got it right.
IGeneX is certified in New York, one of the toughest states in the country for certification. They scored over 95% in their proficiency tests from 2001-2005. Of 58 labs, only IGeneX had a perfect score on Western blot proficiency.
Perhaps you and Nimzovich think Dr. Harris should operate his lab for free, and all his employees should work for free?
??
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
This is a great group! Thank you all for your comments and suggestions. It is very helpful. Please keep them coming, I think this is a great topic.
And thanks to the poster who said I have a great deal of knowledge. When you have been to 50 doctors over the past 15 years, and one who is an LLMD you learn a heck of a lot. And each one seems to be a bigger idiot and more arrogant than the next, including the LLMD. It is very sad, and I think all of us are suffering, and not being given the attention we deserve.
That is why I have learned so much and pretty much through my own reading and research on the internet. Because if I left it entirely in these docs hands, I would probably be dead by now. Please keep it going, I am learning even more from all of you. I think all of us deserve honerary medical degrees by now.
Posts: 21 | From Tampa, Fl | Registered: Feb 2007
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I'd like to get the citation/ reference for this piece of data. Where & when was it published?
I'd like to show it to a doctor who questions the credibility of the lab.
Also I did notice that the report on the poor performance of the other labs was dated 1990. Are there any more recent comparisons? Again, citations would be useful.
I have an llmd, and I'm sticking with her, but I (or the don quioxte in me) has one more "follow-up" appt with the IDS doc and I want to give her something to think about, in a serious way.
I have had 2 IGeneX WB positives, by *CDC Standards* and she told me I don't have Lyme. I know I shouldn' bother, just banging my head against the wall, but in my state this IDS doctor is seen as the state's leading lyme expert, and I hate to think of all the people with lyme she encounters and tells them they don't have lyme.
Karen
Posts: 112 | From RI | Registered: Jan 2007
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IGeneX is certified in New York, one of the toughest states in the country for certification. They scored over 95% in their proficiency tests from 2001-2005. Of 58 labs, only IGeneX had a perfect score on Western blot proficiency.
Posts: 112 | From RI | Registered: Jan 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Karenelee: [Quote] I have an llmd, and I'm sticking with her, but I (or the don quioxte in me) has one more "follow-up" appt with the IDS doc and I want to give her something to think about, in a serious way.
I have had 2 IGeneX WB positives, by *CDC Standards* and she told me I don't have Lyme. I know I shouldn' bother, just banging my head against the wall, but in my state this IDS doctor is seen as the state's leading lyme expert, and I hate to think of all the people with lyme she encounters and tells them they don't have lyme.
Karen
Karen, you're so right. I never had the pleasure of seeing an ID doc but rather a neurologist who is considered the best in my area.
I shudder to think of all the people he has misdiagnosed with MS and God knows what else, simply because he refuses to learn. Even when knowledge is presented to them on a platter, they turn away.
We have the IDSA to thank for this attitude.
They are able to look at dozens of peer-reviewed studies indisputably proving the persistence of the lyme bacteria, yet blithely announce 'these must all be due to cross-contamination in the lab.' Yup, right outta their new Guidelines.
Facts and scientific studies are of little interest to such doctors because it requires them to think for themselves.
You are to be commended for presenting your ID doc with facts.
When she scoffs that 'IGeneX gives everyone a positive,' you can let her know that on the contrary, only about 56% of IGeneX test results were positive as of 2003, pursuant to testimony given to the California Senate Committee on Health and Human Services in early 2004.
Now, if that seems high, keep in mind that these are not people off the street but patients already strongly suspected of having lyme.
Knowledge is power!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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-------------------- Hugz, Tugz and Health to you! Greg/bubbear http://centralfloridaresearch.com Treasure the love you receive above all. It will survive long after your good health has vanished.Og Mandino Posts: 109 | From Central Florida | Registered: Mar 2006
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quote:Originally posted by wrthster: When you have been to 50 doctors over the past 15 years, and one who is an LLMD you learn a heck of a lot. And each one seems to be a bigger idiot and more arrogant than the next, including the LLMD.
BTW----- If it weren't for our (what did wrthster call them? oh ya arrogant) LLMDS then I or any one of my family members would be dead right now! Geez I sure wouldn't be on abx and getting better. If left up to my PCP I would still be fighting to get 2 weeks of Doxy.
Well see if Steer or Wormser will treat you long term wrthster, and good luck with that.
Not sure how exactly how you have YOU to thank for not being dead...... Do you write your own scripts?
"I think nimzy just cloned himself." And Cave, I second that motion!
ALSO I think wrthster is just trying to push our buttons.......
To answer your question as to where I got this information and how recent was two days ago and on this web site. Click the following link and click board members. Please let me make it clear to all, I am not in any way accusing anyone of anything. I am pointing something out, and asking for opinions. That is all. I think the people on this board have the right to know.
To Lisianthus there is absolutely no reason to be obnoxious or rude to me. I am posting to bring this out in an open forum discussion in a positive and constructive way. Thank you. And know, I do not right my own scripts. I just use my brains and try as hard as I can like everyone else.
Posts: 21 | From Tampa, Fl | Registered: Feb 2007
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posted
I don't pretend to candy coat what I say.....
Yep, I can be sarcastic and pi$$y when someone comes on here attacking Nick Harris, Igenex and LLMDs. THEY SAVED ME, MY KIDS, and the rest of my family.
If it weren't for the above mentioned most of us would still be searching for answers and being told "its all in our heads". Cause Quest sure did a bang up job finding out we all had lyme..... NOT.
What you are saying is not at all positive and constructive. And people on this board are very well informed about Igenex & Nick Harris, & the LDA.
posted
I don't blame anyone for being skeptical, and I agree everything should be out in the open. So if you go to the www.lymediseaseassociation.org site, you might also want to click on "Conflicts of Interest" link on the left sidebar, underneath "Information Menu", and download the Conflicts of Interest report.
It's long but full of good information. Turns out many of the same the folks who created the CDC test criteria held potentially (very) profitable test-related and vaccine patents. In fact, what they ultimately did was adopt SmithKline Beecham's definition of lyme (the vaccine manufacturer), which was presented to the CDC five months in advance of their conference.
Based on what came out of this conference, the majority of labs today unfortunately do not report all positive bands - even lyme specific ones like OspA and OspB. Igenex does, and so do a few others. That's one reason most people here and many LLMDs find these labs to be superior. And since Igenex is the only lab to my knowledge using more than one strain, that and their solid proficiency results are enough to earn more of my trust than any other lab out there.
Posts: 621 | From US | Registered: Jun 2006
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Hey Bugbear that site you posted for an article about investigating Igenex was dated 2001. Igenex has passed all challenges given it by the state and even the federal examiners several times since that article was published.
posted
IGeneX is certified in New York, one of the toughest states in the country for certification. They scored over 95% in their proficiency tests from 2001-2005. Of 58 labs, only IGeneX had a perfect score on Western blot proficiency. Michelle [/QB][/QUOTE]
Only posted the OLD news due to this post. I'm not against anyone here. And if Old news is no news several others are no news also. Several posted are from 2003.
-------------------- Hugz, Tugz and Health to you! Greg/bubbear http://centralfloridaresearch.com Treasure the love you receive above all. It will survive long after your good health has vanished.Og Mandino Posts: 109 | From Central Florida | Registered: Mar 2006
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quote:Originally posted by Lisianthus: What you are saying is not at all positive and constructive. And people on this board are very well informed about Igenex & Nick Harris, & the LDA.
Yep
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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LLMDS then I or any one of my family members would be dead right now! Geez I sure wouldn't be on abx and getting better. If left up to my PCP I would still be fighting to get 2 weeks of Doxy.
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