This is topic Attention Igenex Controversy in forum Medical Questions at LymeNet Flash.


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Posted by lynliz (Member # 7171) on :
 
Everybody,
LLMD's are denying their patients meds because of the whole thing happening with Igenex.
Does anyone know what exactly? They're arguing that Igenex basically gives out false positives and we don't actually have lyme.
The guy who runs Igenex is defending his lab.
Anyways I'll try to find the link.
In my humble opinion Igenex is one of the greatest labs and The government is sick of law suits so they're trying to shut it down.
Most of us did out tests there. Any thoughts. And Do u guys recommend any other labs to do my WB in to make my case stronger, my WB at Ignex are positive with all the specific criteria. Not fair. specifically any GOOD international Labs?
This is my Igenex Wb
These are my Western Blots from Igenex done this Christmas:
IgM
18 +
22-
** 23-25 +
28-
30 +
**31+/-
**34+/-
37-
**39 ++
**41 ++
45+/-
58+/-
66 +
73-
83-
93+/-
Meet all the criteria of the CDC, ASTPHLD, NeW York State, and Igenex, etc.
IgG
18-
22-
** 23-25+/-
28+/-
30+/-
** 31 ++
**34 +
37-
** 39 +
**41 ++
45+/-
58 ++
66 +/-
73-
83-
**93+/-
How can anyone deny me the treatment?
Thanks
L
 
Posted by lynliz (Member # 7171) on :
 

if anyone's intested, i tried to cut and paste and then subscribe but too mcu.
Go to www.canlyme.org and once your in the medical forum click on the headline something like"unproved lyme test results".
this is soo important, u will know why your LLMD''s are abandonning you.thanks
L
 
Posted by lynliz (Member # 7171) on :
 
managed to paste it. Very IMPORTANT.
recommended in C.D.C. guidelines.

Dr. Harris, of IGeneX, estimated that his laboratory tested 50,000 to 75,000 patients each year. (Prices go up to $390 for a battery of tests it recommends.) ''These are patients who have been bounced around,'' he said. ''A lot of them were undertreated at some time, and their disease came back.''

Still, he went on, IGeneX runs the traditional tests accurately and gives doctors guidelines for interpreting them both by the C.D.C.'s conservative standard and by IGeneX's more liberal standard -- even though he asserted that the conservative standard would miss many cases of chronic Lyme infection.

He provided a reporter with a document showing that in each year since 2000, IGeneX had achieved scores of at least 97 percent accuracy on the Western blot and Elisa tests, well above the minimum 80 percent required by the state.

But Robert Kenny, a spokesman for the State Department of Health, said the agency was not convinced that IGeneX was performing the recommended tests for the public in the same manner as it has been performing them to pass the state's proficiency review.

Moreover, Mr. Kenny said IGeneX had not supplied requested proof that its urine antigen test can be used to accurately diagnose Lyme disease.

Dr. Harris says IGeneX has been working for more than two years to supply New York State with the proof it wants. ''It's been an exceedingly long process that's nearing completion,'' he said. Dr. Mead at the C.D.C. also confirmed that another laboratory, Bowen Research and Training Institute Inc. of Tarpon Springs, Fla., went beyond the agency's recommended tests.

The State of Florida denied its application last year for a license to perform tests meant to diagnose Lyme, but its founder and president, Dr. JoAnne Whitaker, asserts that the tests it continues to perform are for research purposes only.

Some patients insist that IGeneX's tests have been instrumental in detecting the Lyme disease that other laboratories missed. One such patient is Ronald Hamlen, 64, a plant biologist from Maryland who worked at DuPont for 22 years before retiring recently. Tests run by IGeneX, he said, detected Lyme disease that was missed by other laboratories.

''If I had not had the positive result at IGeneX, I seriously question whether I would have been alive at this point,'' he said in a telephone interview. Before getting tested by IGeneX and going on intravenous antibiotics for 10 weeks, he said, ''all I could do at that point was lie on the couch.''

In contrast, Mr. Courcier's odyssey into the Lyme testing labyrinth began last year on the Sunday after Thanksgiving, when a severe pain in his leg led him to seek care at a walk-in clinic. Preliminary diagnoses of phlebitis and muscle strain proved inaccurate, and as the pain increased and spread, he finally went to the Mayo Clinic.

Doctors there told him that an initial test for Lyme disease came back negative, but they could offer no other clear diagnosis for what was ailing him.

Back home in Texas, Mr. Courcier was referred to a neurologist specializing in Lyme disease. The neurologist sent samples of his blood to IGeneX, as well as to Quest Diagnostics, one of the country's largest medical testing companies. Each lab followed the two-step process recommended by the C.D.C.

IGeneX and Quest Diagnostics performed the Elisa and the Western blot tests on Mr. Courcier's samples. The Elisa came back positive from both labs, suggesting that Mr. Courcier might have antibodies to B. burgdorferi.

On the Western blot tests, however, IGeneX sent back positive results, while the Quest testing came back negative.

Although his doctor started him on antibiotics to treat the possible infection, Mr. Courcier was encouraged by a colleague to visit Dr. Gary Wormser, chief of the division of infectious diseases at New York Medical College in Valhalla, for another opinion. Dr. Wormser repeated the Western blot test and told him in June that he did not have Lyme disease.

At first, Mr. Courcier did not know whom to trust, and he remained on the antibiotics therapy prescribed by his doctor in Texas. But by July he concluded that he did not have Lyme disease and stopped taking the antibiotics, which he said were only making him feel worse.

''It's been a hell of an emotional roller coaster,'' said Mr. Courcier, who conceded that it was a comfort for a while to have a definite explanation for the pain and exhaustion that continue to plague him.

Dr. Mead of the C.D.C. said he sympathized with Mr. Courcier's plight. But for now, he said, patients and physicians should rely on the recommended two-step process. The tests, he said, are accurate in more than 90 percent of cases of long-term Lyme infection.

But he added that he was still troubled by the dispute. ''We don't want to be absolutely dogmatic that it's our way or the highway,'' he said. ''At the same time, it's clear there are tests out there for which there is really precious little to support their accuracy.''

 


Posted by lynliz (Member # 7171) on :
 
Ooooooooooooooooops! Sorrry someone already posted this!! Lyme brain. Nm.
But could you just give me advice, where to do new tests for credibility, international Labs? Anyone, any good ones?
thanks , sorry for the missed post.
L
 
Posted by seibertneurolyme (Member # 6416) on :
 
Here are links to 2 other reputable labs for Lyme testing.

Medical Diagnostic Labs -- http://www.mdlab.com

Stoneybrook (SUNY) -- Note write on orders -- Request that ALL bands be reported http://www.path.sunysb.edu/labs/ticklab/TICKLAB.htm

Bea Seibert
 


Posted by lou (Member # 81) on :
 
Stony Brook is said to have changed their lyme test so that it came up with fewer positives. Also, they are a bastion of steerites. Just so you know.

Several years ago, they were good at only one lyme thing, and that was testing.
 


Posted by seibertneurolyme (Member # 6416) on :
 
Hubby had one set of tests done at Stoneybrook a couple of years ago -- all that showed up was band 41 as positive -- actually this is the only time on 6 or 8 different tests from several different labs that any bands at all showed up.

Actually I was disappointed when I looked at the MDL site -- they don't appear to offer the recombinant antigen test anymore and that was the test hubby had the most luck with.

Oh well, I'm just not sure I would be willing to shell out any money for any tests from any lab at this point in hubby's treatment. But that is just my opinion.

Bea Seibert


 


Posted by Lymetoo (Member # 743) on :
 
quote:
Originally posted by lynliz:

LLMD's are denying their patients meds because of the whole thing happening with Igenex.


If an LLMD is denying patients care based on this NY times article, then they aren't much of an "LLMD" in my book. Sounds like a duck to me.

I agree with MDL or Bowen as possibilities. Here's something else you may need.

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu
 


Posted by lynliz (Member # 7171) on :
 
thanx for the labs.
lymetoo the Wb explanation rocks, thank you.
these ducs are pigs.

[/B][/QUOTE]


 


Posted by lynliz (Member # 7171) on :
 
Lymetutu again BIG thanx I'm dancin!
Finally understand my western Blots thank you!
My mom also says thanks. Very helpful and valuable informations, won't ever let a doctor tell me otherwise next time, no more fooling me.
L
 
Posted by troutscout (Member # 3121) on :
 
Fairly broad statement.....I feel you may not understand the meaning of LLMD....in fact, I don't know of am LLMD that does what you said...glad these folks set this straight with you already.

Trout
 


Posted by lpkayak (Member # 5230) on :
 
does any one use quest? they have done the bands on the wb if my doc orders it...
 
Posted by Lymetoo (Member # 743) on :
 
quote:
Originally posted by lynliz:
Lymetutu again BIG thanx I'm dancin!
Finally understand my western Blots thank you!
My mom also says thanks. L

Yes, Dr C's explanation is the best I've seen. The WB makes so much sense after reading it! Glad you liked it!

Kayak....Quest S**KS!! It's not a valid test for Lyme, in my opinion!

Go with Igenex in CA. www.igenex.com

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu
 


Posted by Thomas Parkman (Member # 3669) on :
 
Dear People,

Quest is a crock. Do not even consider using them. My duck here in Hell sent off a blood sample to those clowns, specifically after I had forbidden him to do it and the damn thing came back negative. I had alread had a positive WB from Igenex with lots of negatives with interesting positive bands that really would not be positive it there were not something there-like lyme disease, for instance.

I was also sick as a dog and exhibiting those symptoms which would be consistent with a diagnosis of lyme disease. My duck dismissed the whole business and needless to say I have dismissed him. The quest test came back with a 41 kDa positive. Now pray tell me what was I doing with a positive 41 kDa and all those symptoms? Of course the fool called me crazy and prescribed an anti-depressant. Can you believe this? In any case avoid Quest like the plague. Cheers. Thomas Parkman
 


Posted by chroniccosmic (Member # 7789) on :
 
Lou---What is a bastion of steerites? It is taking me a while to understand the lingo.

By the way, I also agree about Quest. Had negative ELISA which got me practically laughed out of the doctors office when I had the nerve to ask for a western blot. But did find a wonderful LLMD who treats based on symptoms while trying to confirm the disease and said something that I will never forget, that he didn't want me to be sick any longer than I had to, that I had been sick long enough! Validation means so much with this disease.
 


Posted by Lymetoo (Member # 743) on :
 
"steerites"...derived from the name of Alan Steere ... a "doctor" who does not believe in chronic Lyme. He was one of the early discoverers of Lyme disease and now has turned his back on us.

Maybe this will help explain.

Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

Lyme Wars http://www.wildernetwork.org/Lyme_Wars.html

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu
 




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