posted
Has anyone ever tested negative with Igenex labs? My LLMD said today that no one tests negative with that lab and I just wanted to see if there was anyone out there who tested negative with them. Thank you!
Posts: 44 | From Phoenix | Registered: Mar 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Several people here have tested negative.
Posts: 1142 | From South | Registered: Dec 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Maybe 1-2 out of 100 I'm guessing. `
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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scorpiogirl
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Member # 31907
posted
A friend of mine tested negative but she definitely has Lyme disease. She was diagnosed on clinical symptoms and her 11 brain lesions. She has been undergoing treatment for 2 years now. Recently her kids were both diagnosed w/ Lyme by the world renowned Dr in CT. It is believed that she passed her Lyme to her children while she was carrying them.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
My daugher, 4 times so far.
Depending on the test she did have up to 3 positives but never on the same side (IgG and IgM).
Ditto for babesia and she had all the babs symptoms. Took over 2 months to start and resolve the babs and 11 months for babs to disappear.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Is it the lab or is it the folks that send their blood to them?
When people go to Igenex, it's normally because they are already highly suspicious of lyme and/or it's co-infections.
So, there are two factors going on here. 1st--Lab Corp and Quest are not so good (in addition to most doctors don't know how to really read a western blot) and 2nd--the folks who use Igenex.
Lyme is a clinical diagnosis, as is so many other forms of sickness. For a myriad of reasons, it's helpful to have labs which confirm this diagnosis. This is not alway possible, as in some who get negative test results even from Igenex, and it does not rule out lyme.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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BackinStOlaf
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Member # 23725
posted
I think many test positive because most people who have their blood sent there have Lyme symptoms! so it makes sense if you think about it.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
I am newly diagnosed and too worry that i may be treating the wrong illness due to a false positive test.
However on my 1st visit to my LLMD a patients Igenex results were on his table as he entered data on his pc. He was call out for a brief moment and thinking the test result was mine i grabbed the paper and took a glance at it.
The paper i looked at had one positive band and it wasent a lyme specific band at that.
The test was as close to negative as it can get, realizing the result wasn't my own i immediately placed the paper back on the desk and sat back down lol.
Shortly after i was presented with my results which had 6 positive IGM bands and my iGG which had 3 positive bands one being a triple positive.
So in comparison to the test i had looked at previous i would say that was a negative result or close to it.
posted
Wow, fifty three percent tested positive. That seems way too high. I received my test kit from Igenex, but I am debating on whether to spend the money. I've read stories about companies preying on ill patients. I think there was a company named Bowen that was giving false positives.
It is in a labs best interest (if they are unethical) to have as many positives as possible. Think about it. If they find lyme disease that Quest or Labcorp didn't, they come out looking like they have superior testing. If the percentage of negative tests matched the big labs, no one would use Igenex. They have to have a competitive advantage in order to make people spend money out of pocket. I know some will say they test for more bands, but I wouldn't mind seeing more data.
Unfortunately, lyme has to be clinically diagnosed. There is no definitive test to compare results. Since lyme has so many symptoms, it can mimic countless health issues. You could find a healthy individual, and they would be able to pick out some of the lyme symptoms. I have a lot of symptoms, but my symptoms also fall under other conditions (celiac, adrenal insufficiency, food allergies, leaky gut, Chronic fatigue syndrome, Sarcoidosis, anxiety/depression, etc.) It seems like a lot of people alternate between these conditions. It almost seems like people want to test positive for lyme. I can understand this. Everyone wants to have a cause for all their symptoms.
I'm going to try Quest first and decide after I do more research. There shouldn't be a 53 percent positive rate. It shouldn't be anywhere near that. I understand the "only people with lyme" get tested at Igenex argument, but it is odd that other labs do not.
Even if a lab was reporting false positives or had too sensitive of a test, it would be extremely hard to prove. You could draw blood at the same time from the same person and send it to a lab. If the labs results were different, people would conclude that the bacteria was hiding or the control was different.
The only thing I can think of would be for a news agency to do an investigation (Dateline). They could find people from a geographic region that does not have lyme. They could send the blood samples to different labs to see how many false positives came back. Of course, they would have to make sure the patients did not travel to a lyme region. There would still be controversy over the results.
Posts: 11 | From florida | Registered: Sep 2010
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Out of curiosity I wanted to see what the test results would be if the blood sample come from seemingly healthy people. So recently, a couple of friends of mine volunteered to have their blood tested through Igenex. ***My friends seem to be in good health.
And guess what.....
They both tested positive for Lyme Disease via Igenex.
I can only assume that either they do actually have Lyme Disease but for some reason they don't seem to be suffering any negative health effects.
Or....
Their Igenex test results were false positives.
Posts: 1223 | From U.S.A | Registered: Jul 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
That is horribly disturbing to hear.
quote:Originally posted by emla999/Lyme: Out of curiosity I wanted to see what the test results would be if the blood sample come from seemingly healthy people. So recently, a couple of friends of mine volunteered to have their blood tested through Igenex. ***My friends seem to be in good health.
And guess what.....
They both tested positive for Lyme Disease via Igenex.
I can only assume that either they do actually have Lyme Disease but for some reason they don't seem to be suffering any negative health effects.
Or....
Their Igenex test results were false positives.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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quote:Originally posted by emla999/Lyme: Out of curiosity I wanted to see what the test results would be if the blood sample come from seemingly healthy people. So recently, a couple of friends of mine volunteered to have their blood tested through Igenex. ***My friends seem to be in good health.
And guess what.....
They both tested positive for Lyme Disease via Igenex.
I can only assume that either they do actually have Lyme Disease but for some reason they don't seem to be suffering any negative health effects.
Or....
Their Igenex test results were false positives.
Thanks for posting. That information will help people keep an open mind. I know that lyme disease is a disabling disease and people have reported chronic lyme conditions. We do not know how prevalent lyme disease really is. I know that Igenex and other labs have been saviors for some. These patients probably responded extremely well to antibiotics. On the other hand, there also can be devastating effects of a false positive. It could actually make your life worse and cause other problems.
I think keeping an open mind to other conditions is key. I know some will believe without a doubt they have lyme and go through extensive treatments. This may include oral and intravenous antibiotics. What if that person suffered from Celiacs and had a false positive for lyme? They could be living a great life by just changing their diet.
Posts: 11 | From florida | Registered: Sep 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I was negative, and I'm crammed full of Lyme, with a few other chronic, debilitating infections thrown in for good measure.
posted
IGeneX is one of the best testing labs. It uses two strains to test against, #31 and #297, not the usual single strain, so it can pick up more cases.
However, not everyone tests positive who has the illness. There are 27 reasons listed for seronegativity at www.canlyme.com/seronegreasons.
Even through IGeneX testing. People who have tested negative on their first IGeneX test often test positive later after some treatment.
Those who are sickest often test negative, as the body is unable to mount an antibody response, which is what the test measures.
IGeneX has stated they have a false positive chance only max 4% of the time - what they mean when they say they have a specificity of 96%.
I personally have never heard of anyone with a false positive there. More like that 27 reasons for showing negative, when the person is actually ill.
Posts: 13116 | From San Francisco | Registered: May 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
emla wrote: My friends seem to be in good health.
And guess what.....
They both tested positive for Lyme Disease via Igenex
According to my LLMD that is not unusual. There is a percentageof ppl who have lyme but are asympathetic. There are other diseases where a person is infected but asymptomatic. Ever hear of typhoid Mary?
Nice that you or your friends have that kind of money to put out just to quench your curiosity.
The archives are very useful when looking for answers
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
I thought of doing the same thing - asking friends/family to be tested. Never did - but would be curious what the results would be.
Emma - can you get the bands your friends tested positive for? Specific and otherwise?
Chuck - you always have interesting statistics. Has it been done/could it be done - for folks on this list that tested with Igenex - submit their results (a poll here?) to see which bands show up and how often? ie a chart/graph -actual numbers/percentages ? ranking from bands that show up the most - down to the least? To include pos/IND - specific/non-specific bands - IGM/IGG separate? to see what bands show up in folks considered neg or pos for LD?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
I tested negative on Western Blot and so did two of my family members. A friend of mine who was bitten, had the EM rash and was symptomatic also tested completely negative at IGeneX.
Posts: 9 | From Irvine, CA | Registered: Jul 2007
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quote:Originally posted by TerryK: [QB] emla wrote: My friends seem to be in good health.
And guess what.....
They both tested positive for Lyme Disease via Igenex
____________________
Nice that you or your friends have that kind of money to put out just to quench your curiosity.
- I had the same thought, Terry. Who has extra money to throw around on tests when they "feel great??"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
posted
Susank,
My friends had their tests a couple of months back but I'll contact them to see exactly which bands it was.
Posts: 1223 | From U.S.A | Registered: Jul 2007
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quote:Originally posted by TerryK: [QB] emla wrote: My friends seem to be in good health.
And guess what.....
They both tested positive for Lyme Disease via Igenex
____________________
Nice that you or your friends have that kind of money to put out just to quench your curiosity.
- I had the same thought, Terry. Who has extra money to throw around on tests when they "feel great??"
I find it completely plausible. I thought of doing the exact same thing with my girlfriend. I referenced in another post that it would be interesting to see a news agency do a similar test. Moreover, Susank stated she thought about doing it. Some people spend 10k plus to get diagnosed and treated. It is almost like people want to have lyme. I think an extra $250 to confirm if Igenex will give a false positive to a healthy individual is a small price in comparison. Some people will be leery of a negative test result and get quite a few extra tests.
I would rather use a control that is healthy than spend money on doing the test twice.
Posts: 11 | From florida | Registered: Sep 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had my husband tested for lyme through Igenex just for peace of mind since I had gone undiagnosed for at least 10 years.
He tested negative. He had one + on one band. (I think it was band 41.) That was it. Lyme doc said that was very negative.
My husband is healthy and has never had any lyme symptoms.
Posts: 9931 | From Maryland | Registered: Dec 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
If I had the money, I'd test my family in a second just to see how they come back to verify just how legit Igenex truly is.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Wish you would, seek, so you can quit complaining about Igenex.
I'm sure there are healthy people who could have positive test results. Many are able to keep the disease in check with their healthy bodies. But how long will they STAY healthy?
I'd be willing to bet that my "healthy" brothers who had as many tick bites as I did, would show positive. The tests show EXPOSURE in most cases.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
em - thanks - intestered in the results. What is frustrating - I have been tested 3 times by Igenex. Repeated and new bands - and am considered LD neg. I want to be LD neg. I am very sick with something - if it is not LD - then what is it? Igenex has the epitope test for band 31 in regards to viruses. I just wish they or other labs or some entity could have tests/whatever to say with some certainty what the bands could be from if not Lyme? Is that too difficult? I don't know what is making me this sick. Something in me is causing bands to show.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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