Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi, I wanted to get my blood drawn this morning, but my husband was late for work and he couldn't take me to get it done since I'd called a lab place and they said they were very busy.
I'm wondering how accurate it is since Dr. H ordered several of the tests adding up to almost $1000. I want to put this thing to rest and know once and for all if this is what has been wrong for 12 years, but am afraid of getting a false positive or a false negative.
I wish it was that simple -- do one test at one lab and know with certainty that you either do or do not have a tickborne disease.
Sorry -- but that is just not reality with the current testing.
Many many reasons for false negative tests -- in my opinion false positive tests are very few and far between. I think the LymeInducedAutism site has a list of 27 reasons why you might have a negative test.
Basically with an antibody test, such as a Western Blot, what you are testing for is your immune system response to a known pathogen. There are multiple strains of Lyme, Babesia, Bartonella, Mycoplasma, Ehrlichia etc etc. If the lab does not test for the strain you have then you will most likely get a negative test.
Hubby is one of those unfortunate people who is sero-negative. His tests hardly ever show any antibodies to anything. One doc (not an LLMD) actually told us he felt it was a good sign at one time when hubby started testing positive to viruses such as HHV-6, EBV, etc. He said it was a sign that hubby's immune system was starting to function more normally.
Anyway, if money is an issue or if you have had prior negative antibody tests then I would suggest the following 2 tests.
1) A bloodslide from Fry Labs for Bartonella and Babesia -- unforunately they don't have an equivalent test for Lyme
If you test positive for either Bart or Babs then the odds are pretty good that you also have Lyme. According to hubby's LLMD if all you have is Bart then that would be easily curable with a couple of weeks of antibiotics.
2) The Neurosciences Lyme test -- this test looks for things not found with the other traditional antibody tests.
posted
My understanding is that Igenex is one of the most reliable in the world, and it may be because they have such a high amount of various samples.
If you go to a lab that only has certain samples, and your lyme isnt that sample strain, you're going to test negative. The more samples, the greater the chance of hitting on it.
False negatives are very common with lyme. I had 2 elisa-abs..negative; 1 pcr negative; 1-WB/maybo..inconclusive; 1 WB ingenex..positive.
Remember that lyme is a office diagnostic determination as well based on symptoms, probability of exposure to ticks, etc..
Posts: 514 | From . | Registered: Apr 2008
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posted
I'm wondering where Adamm got his info on IGeneX?
According to my LLMD, who is in direct contact with the director of IGeneX, their detection of Lyme with a Western Blot is 90% accurate. And IGeneX detection of Lyme in a tick is 95% accurate. This is what I was told, I cannot confirm it of course.
If money is an issue (as it is with most of us!) I would do a regular IGeneX Western Blot IgM/IgG for Lyme for $200 and see the results of that first before investing in more expensive tests.
~webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
thanks all!
I think Dr. H ordered a bunch of the tests because he suspects Bartonella at least and wants to see what is going on for sure. He wants me to be tested for heavy metals, adrenal funtion, metabolic test, parasite test, ect. So for now I'm having the WB done and then depending on the costs of all the other tests...
I hope the IGENEX is 95% accurate instead of 58%, I might as well toss a coin then.
posted
Quest and LabCorp are pathetic for Lyme testing. Maybe someone will have some stats. (How would you prove their accuracy anyway?)
And I'm sure I've read some links on Igenex's accuracy here.
Anyone?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Angelica
Unregistered
posted
If you want to save money just get the Igenex western blot and skip the coinfection testing and ask your LLMD to treat you on your symptoms alone. Do not do the Igenex urine testing if that is being offered. You can always get that later if need be.
If you have a disability claim then it might be of benefit to do the coinfection testing too to prove you have more then one disease.
Coinfection testing can be unreliable from Igenex or Fry.
Isn't it better to get tested earlier in the week for Igenex meaning not on a Friday or doesn't your blood get old?
Ocean from the sounds of your anxiety I would guess in my un expert opinion that you have bart too.
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adamm
Unregistered
posted
That stat was on the printout with my test results.
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Angelica said:
quote: Isn't it better to get tested earlier in the week for Igenex meaning not on a Friday or doesn't your blood get old?
Yes, it is very important that you NOT have your blood drawn at the end of the week. My LLMD won't do it after Wednesday.
The lab needs to get it in time to process it before the end if the week. Having it sit around somewhere all weekend may skew the results.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
From the IGeneX.com website, click on "What Test(s) to Order" on the left, and in the page that appears, it lists the recommended Lyme tests, then states:
"The combination of all of the above tests provides higher than 90% sensitivity and better than 95% specificity."
Sensitivity is the likelihood that a true infection will be found and specificity is the "accuracy" of a positive result.
The combination of tests includes the follow-up test (#875), which is ONLY needed if the initial testing is negative. (Some drs appear to not understand this. Mine wanted me to do this test even though my initial panel was positive. The CEO of IGeneX confirmed on the phone that it was not necessary with an intial postive result.)
So to answer your original question, IGeneX testing has a 90% chance of detecting Lyme if you have it. (And if you do get a positive result from them, then you can be 95% sure that that result is correct.)
As I understand it, all of this only applies to their Lyme testing. They do have complete co-infection panels (#5080 and #5090), but I haven't seen anywhere their sensitivity or specificity for those. Does anyone else have an opinion as to who does the best co-infection testing?
Posts: 44 | From Indianapolis | Registered: Sep 2008
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posted
The second post up there said the FISH test can only detect one of the species. The first FISH test they offered was like this but not anymore. They now can detect microti, duncani, and divergens and the test is designed to be genus specific so it should be able to catch "most" species. You can read about it at igenex.com It's at the bottom of the babesiosis page.
Posts: 499 | From Indiana | Registered: Oct 2007
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Angelica
Unregistered
posted
Some say Fry labs is better for coinfection testing but they missed my bart on a blood smear. There are so many variables when testing.
Igenex coinfection testing can be unreliable and different types of babesia can cross test.
Coinfection testing needs improvement especially considering it is costly.
My first Igenex test for Lyme was negative so I had to get retested a couple of months later and then did get a positive test.
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posted
I may be wrong, but I thought the sensitivity of a test is how likely it is to not have false positives.
As for false negatives I certainly do not agree that IGeneX finds Lyme 90% of the time that it is actually present.
Hubby says you multiply .9 by .95 which gives the probablity of 85.5%. Still not really sure it is actually that accurate though.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Angelica,
My Igenex IGG test was also negative, but had IND on IGM #31, #39 and 41++. (which is also negative)
Before my Igenex, I tested CDC positive on iGM, bands #23 and #41.
Did your LLMD change your abx after your Igenex turned up positive?
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Angelica
Unregistered
posted
He kept me on the same meds because I had already tested positive for babs which he was treating and he already suspected Lyme I believe due to looking at my first Igenex test and bands and listening to symptoms.
I had a borderline test from another lab years before and he looked at that test as well.
He actually diagnosed me before he ever met me by listening to my friend tell him about some of my horrific symptoms. He told her it sounded like Lyme to him. He was right!
I had a bulls eye rash years ago the same week I started to have anxiety and panic attacks for the first time ever. If I knew more at the time I would have found an LLMD. Unfortunately I had bad doctors at the time and did not get diagnosed. I saw many many doctors before I saw a LLMD.
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IGeneX's claim is that the combination of tests has >90% sensitivity. That is, if the entire Complete Inital Lyme Panel (IFA, IgG & IgM Western Blots & PCR on whole blood & serum) is negative, the Lyme Dot Blot/PCR Panel (urine test w/antibiotic challenge) must be used as a follow-up. Only if both panels are completely negative would they say the overall result is negative.
Another issue here may be that many results that IGeneX calls positive would be considered negative by the CDC standards. (One of the conspiracy theories surrounding LD is centered around a corrupt, intentionally narrow definition used by the CDC.) I think most of us would trust IGeneX here, but I suspect most (not Lyme literate) MD's would side with the CDC.
Still it does seem hard to believe that there really is a Lyme test with >90% sensitivity, given what we all know about how elusive these critters can be.
Posts: 44 | From Indianapolis | Registered: Sep 2008
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posted
In practical terms, the Western blots even done through an excellent lab may not test positive, for about 27 reasons. One reason is that you might have a strsin it doesn't test for. That's why it may have said 58% sensitivity. Even people with a bull's eye rash don't always test positive.
The chances of having a wrong positive at IGeneX is slim. I've heard 93-96% accuracy.
Posts: 13116 | From San Francisco | Registered: May 2006
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