While waiting for the doc to do what he was gonna do - the doc asked me what was going on with me health-wise.
I told him.
Big mistake.
He went on this Lyme-bashing rant (along with suggesting that my recent weight gain had nothing to do with my out-of-control thyroid problem...)
He said that ANYone's labwork that is sent to IgeneX comes back POSITIVE & that he could send a sample of the WALLPAPER to IgeneX & it would come back POSITIVE for Lyme.
Naturally, I came to the sudden conclusion that my ob/gyn is an idiot, yet I chose not to comment on my conclusion as I was sitting there wearing only a paper gown & socks.
I didn't feel like the timing was right for me to educate HIM about LD - as I was not in the right "position" to do so at the time...if you know what I mean.
Anyway - just wondering if others have heard controversies about IgeneX.
ALSO - are there other labs that are competent when it comes to running LD tests?
I already KNOW that I have Lyme - regardless of what any tests say. I've been sick far too long. I know it's a clinical diagnosis..and my IgeneX report only confirmed it.
Thanks for the info.
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DR. Wiseass - not a real doc - just a real wise ass.
www.twistoflyme.blogspot.com
Sorry to hear your appointment went as it did...
I know there are a lot of skeptics of IgeneX - I have not heard of any controversies though...
I have heard that there are people who have tested negative for tick borne illness through IgeneX.
I know that IgeneX has played a huge role in saving my health if not my life.
I would take his comment with a pinch of salt.
DLL
What a great post! I too had a really negative response come from an Infectious Disease doctor that I saw recently. I had been coming up equivocal with MDL every time that I tested and finally I asked my LLMD to send my bloodwork to Igenex and I had a positive IGM and IGG and was so relieved that I finally had proof that I wasn't a hypochondriac.
I went for a second opinion armed with the test results because I figured this doc might not think it was lyme and he basically told me that they are not an accredited lab and that the results don't mean anything! How frustrating!!!
So just where can you send your bloodwork so that it will be acknowledged by general md's I wonder??? The only lab that he said he said he trusted was Quest and Labcorp! Go figure!!!
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-Gretchen W.
"If I can stop one/Heart from breaking/I shall not live in vain/If I can ease one Life the Aching/Or cool one Pain/Or help one fainting Robin/Unto his Nest again/I Shall not live in Vain." Emily Dickinson
Have gotten positive tests from Igenex when I was still symptomatic. I have also gotten negative tests when I still was having symptoms. Many symptoms were then from a still lingering heavy metal toxicity and they are impossible to differentiate because they feel the same. This is part of the
problem with testing for Lyme. What causes what.
I have gotten negative test from Bowen when I still had Babesia.
We been told by his majesty, the Dean of Infectious Disease at the University of Washington that Igenex not reliable. My husband had a positive Igenex test in his hands to give the Dean to hopefully get IV's. No. My husband was not walking any longer and in a wheelchair. Refusal; "you have Parkinsons".
My husband was treated by our doctor for Lyme and all inherent infections as well as heavy metals and is well know.
The only test I know of that is reliable all the time is the Lymphocite Transformation Test for Lyme done in Germany, paid and recognized by insurance. It is very similar to the MELISA test method of testing for heavy metal toxicity which can be done in this country. It also is a lymphocite type test. Look it up. It probably will take another 50 years before it is recognized by the "authorities". I am not certain if they are offering the MELISA for Lyme in this country yet.
I know this does not help much, but if you want to know for certain, the Lymphocite Transformation Test (LTT) for Lyme is done in parts of Europe; Germany for certain.
The Lymphocite test for heavy metals is available here.
It is easy to find out via MELISA or Lymphocite Transformation Test (Berlin and Karlsruhe-Ettlingen).
Take care.
Take care.
The Igenex Elisa and Western Blot are accepted by the CDC according to CDC criteria. Many of their other tests, like the PCR and the Dot Blot are still considered experimental, and Igenex uses their own methods to test.
Igenex has been thoroughly grilled numerous times, and has always passed all challenges to their lab standards. They have an approximately 65% positive rate on their Western Blots.
In my own house I was clearly positive (by CDC standards) on IgG and IgM WB, my son was negative, and I had negative Dot Blots. My son, after treatment based on clinical signs, had two clear EM rashes as herxes.
So, from our own results, I wouldn't say that all Igenex tests come back positive, even when they should. If a doctor believes there is something wrong with the testing, they are operating on hearsay, not facts.
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Sonoma County Lyme Support
[email protected]
[This message has been edited by riversinger (edited 13 January 2005).]
[This message has been edited by riversinger (edited 13 January 2005).]
Even the CDC says lyme is a CLINICAL diagnosis. Not a laboratory diagnosis.
All of the other Ducks do not know and rely on test results. It is a waste of time and money for everybody and delays treatment.
The patient is the only one that suffers.
What about the co-infections that go along with lyme?
I am sorry that insurance companies rely on tests too for payment and coverage.
It is very hard for people with no money.
We need to keep fighting for our rights and get lyme and it's treatments recognized.
Bottom line-STAY AWAY FROM THE DUCKS!!!!
okay, I'll settle down now.
The two toughest states to get commercial lab certification from are California and New York, and Igenex annually passes those. Many other labs, like Stony Brook, have gone from a "homebrew" test to an FDA-approved kit for their Elisa's and WBs, and in order to pass the FDA certification, they had to desensitize the tests. (There's always a trade off between sensitivity and specificity.) Many Lyme docs have been disappointed in Stony Brook's kit results since this changeover.
Igenex has high positive rates compared to Quest, etc, because they only do tick borne disease tests, and people have to go way out of their way to use them, which means they're probably really sick with Lyme by the time their blood gets there.
Also, Igenex test for antibodies for multiple strains of the Lyme bacteria, unlike many of the commerical test kits, which only test for one.
In testimony given at the Informational Hearing on Lyme Disease: Issues in Diagnosis and Reporting, Wednesday, February 25, 2004, to the California Legislature Senate Committee on Health and Human Services (Deborah V. Ortiz, Chair) Jyotsna Shah, PhD, CMLD, MBA, Vice President of Research and Development Dept. and Laboratory Director of Clinical Reference Laboratory, IGeneX Inc. of Palo Alto offered the following:
``For the year 2003, just to give you an idea, we had tested 698 patients suspected of Lyme disease. Three hundred and ninety-four were positive by either Western blot or antigen test or PCR. If we had gone by the CDC criteria only, we would have missed 70 percent of this 394 cases.''
In other words, 56% of the Lyme disease tests performed by IGeneX Laboratory in 2003 were positive.
This testimony is on the public record and is available online as part of the recording of the complete hearing at www.calchannel.com. Go to Search Archive, Browse by Month (February 2004), then to February 25th (listed as 022504), Senate Info- Hearing, Health and Human Services - Lyme Disease and hit ``watch.''
--Kris
Mainstream docs have 'bloodtest on the brain' - every illness must be confirmed by a bloodtest....well lyme messes up their way of thinking and if there is possibly a new way of thinking that might make a doc look like they don't know something, most will resort to the old way of thinking.....
Like many, I had my questions early on about Igenex. I certainly had the skeptical thought that they produce more positives because that is the way they stay in business. I had my own labwork sent there.....negative. I'm a seronegative case, so the negative actually made me happy and showed me that Igenex doesn't send back a positive to everyone.....a highly unscientific way of coming to my conclusion, I know, but it worked for me LOL.
And, as the others have said, the bloodtest is just one very small part of the diagnostic process....Dr. WA, your story made my day.....hope your gyny appt went well. This doc has a rather distorted view of the world anyway, if you catch my drift, so I wouldn't place a lot of emphasis on his opinions.
cootiegirl
I was laughing my head off when I read that.
lymiecanuck