Curious as to what % of Igenex tests come back negative? anybody have any stats?
Posted by lou (Member # 81) on :
No, and we have heard this question too much already. I think it would be good for you to do a search of the archives as their performance has been discussed endlessly. Plus, their certifications are available on line for you to read.
The problem is that people slander them by saying that all the tests come back positive, which is certainly not the case. Not even all true lyme cases come back positive because the WB depends on production of antibodies. If the immune system is stomped, no antibodies. The sickest people seem to be negative.
So, maybe you weren't questioning their results, just wondering what your chances are of getting a positive? Why don't you check their website for some answers? They have some FAQ there I believe.
Not barking at YOU, just irritated that one of the best labs around keeps getting knocked unfairly.
Posted by lymemomtooo (Member # 5396) on :
Kumba,
My daughter has been(WB) negative twice and equivocal once from IGENEX. So you are not always positive there. Only if you have a lot of the antibodies floating on the day of collection.
She did have a positive urine test there. AND her clinical symtoms are screaming Lyme and co-infections. Lymemomtooo
Posted by kumba (Member # 7733) on :
Whoof Whoof back at you, lol!!
No, I am not questioning the validity of their test and yes the subject has been exhausted here. I usually try to do searches so as not to be redundant. I have read their cert's and actually printed it out and brought it to my neuro who said "all blood we have sent to them come back positive". And found another doc to send off my serum. so I am wondering what % of tests come back negative. I could call Dr. Harris. Not bashing Igenex by any means. I am aware that a negative test doesn't mean Lyme Free.
Posted by lou (Member # 81) on :
Not whoofing at you!!! I said that already!!!
Whoofing at the opposition and would like to bite them too.
My feeling is that calling IGeneX on a question like this takes up their time that should be spent in other ways than answering all the questions lyme patients might have. What other lab even takes calls from patients? None, far as I know. And not whoofing at you here either.
If you wish to avoid irate and short tempered reactions from lymies it is better to explain where you are coming from, as your motivation was not clear from the short message that was posted. Other people read these threads, so even tho you may already have done some homework, many people have not and will learn from what is being said.
I wonder if your neuro has considered that he has a lot of lymies in his practice. Neurolyme is pretty common in endemic areas. It would also be interesting to see those results, how many actual positives he has gotten and whether they were consistent with the symptoms. Sometimes docs say things like this when it is not true....they haven't sent many or any samples for testing....they are doing this to avoid diagnosing lyme. Not saying this is true in his case, but it does happen.
Should I put in some smiling gremlins so you know we are not arguing with each other? Posted by Michelle M (Member # 7200) on :
I don't know percentages but as I've said before, please remember that if a lyme specialty lab seems to have a lot of positives, keep in mind that they're not exactly testing random people off the streets.
They're testing people whose LLMD's already strongly suspect they have lyme disease.
So it shouldn't be a big surprise.
Further, they are testing for two additional, specific bands that other labs totally OMIT.
I wonder does your neurologist even know that?
Here are some threads from other lymenet people with negative igenex results. There are a trillion other references; I just hunted for 'negative igenex' in the subject line.
Many turn positive after a course of antibiotics.
Naturally, you cannot expect your average neurologist off the street to know this. An average lyme patient knows about 20X as much about lyme disease as a neurologist.
And that is probably being kind to the neurologist.
My husband had A IGeneX Western IGG and IGM and both came back negative. He did have a few positive bands though.
Kathy
Posted by lymednva (Member # 9098) on :
I've had three IGenex WB's and all have come back "negative" with varying amounts of positive and indeterminate bands that are Lyme specific.
I also know that my body does not seem to make antibodies and hasn't since the early 70's, if not before.
That's when I had my first Rubella vaccination, prior to pregnancy because I worked with young children and didn't want to risk it.
However, at the beginning of each pregnancy (3 altogether) I showed no immunity on the standard Rubella titer that is done.
So, it goes to reason that if I didn't make antibodies to three vaccinations, it would not be unheard of for my body to not be making antibodies to anything else either.
If my thinking is off, please enlighten me! Posted by psano (Member # 7785) on :
I've been Igenex negative twice and indeterminate once. However, I've had low CD57s, highest of 60, but in the 20's and teens at least 3 times since then.
Posted by am36 (Member # 9409) on :
I was "only" lab positive from Igenex. LLMD had me double-checked at another (non-specialty, but reputable) lab. I was even "more positive" there than at Igenex, with more bands showing positive. CDC pos there as well.
Posted by kumba (Member # 7733) on :
Just got back my Igenex results: negative according to CDC stds and Igenex also. while I know that a negative result doesn't neccesarily mean no lyme disease, I am going to pursue my toxoplasmosis dx for now.
Posted by Michelle M (Member # 7200) on :
quote:Originally posted by kumba: Just got back my Igenex results: negative according to CDC stds and Igenex also. while I know that a negative result doesn't neccesarily mean no lyme disease, I am going to pursue my toxoplasmosis dx for now.
Can you post us your positive or indeterminate bands, if any?
Were you on antibiotics when you tested?
Michelle
Posted by kumba (Member # 7733) on :
Hi Michelle, Igm:
28 kDA ++ 34 kDa IND 41 kDA IND 58 kDa +
It reports it as negative by cdc and Igenex stds. With a suggestion for retesting in 4-6 weeks or by another method if Intermediate on Dbl starred bands as in 34 and 41 that it MAY be of significance.
IGM: 39 kDa IND 41 kDa + 66 kDa +
No I held off on antibiotics so wasnt on them at the time of testing. I am not going to be retested in 4-6 weeks.
Posted by Robin123 (Member # 9197) on :
Kumba, you've listed both as IgM -- isn't one set IgG?
Posted by kumba (Member # 7733) on :
Oops...first set is IGG
Posted by kumba (Member # 7733) on :
Oops...first set is IGG
Posted by Lymetoo (Member # 743) on :
One of the most learned lyme specialists in the world has this to say about bands on your blot:
"The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93."
And we all know about 41, the 'may be somethin' else' band.
I fear you put too much weight on the words "positive" and "negative" rather than specific findings. I'd like to see you getting better and I personally feel these are significant bands, especially in light of your symptoms. Doesn't matter that the overall test result is negative.
Michelle
Posted by Anneke (Member # 7939) on :
my husband was tested twice, and both times negative. I've heard of a good number of samples being negative as well. Igenix has proven itself to be a reliable lab in my opinion. They sure have withstood a lot of scrutiny.
Theresa
Posted by hshbmom (Member # 9478) on :
Hi,
My dd and I both tested negative according to Igenex and CDC, but both of us had a few specific bands that were positive, and others that were indeterminate.
We both had rashes after a tick bite. I'm very thankful for the rash, and for the good advice her to photograph it, because it's hard evidence of your infection.
My dd had one positive Lyme antibody test, but it "wasn't positive enough to be considered Lyme disease" by one sadly uninformed physician.
I had one negative Lyme antibody test (Lyme titer), and my dd had two that were negative. She has screaming Lyme symptoms.
5 in our family submitted blood for a IFA flow cytometry test last week...a Bowen test that's still in the experimental stages. We'll see how that turns out, but I know it might not show anything. Six in my immediate family have symptoms. Only 3 are being treated so far, but I'm working on that.
Nancy
[ 01. December 2006, 07:04 PM: Message edited by: hshbmom ]
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Michelle M: One of the most learned lyme specialists in the world has this to say about bands on your blot:
"The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93."
Doesn't matter that the overall test result is negative.
Michelle [/qb]
Amen!
From the "Western Blot" link above:
"Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track."
[Dr C of MO]
Posted by grace1 (Member # 10347) on :
I'd be interested in the answer to the question, in order to show doctors that not all tests from Igenex come back positive, like many of them are misinformed about.
My Igenex Western blots came back negative, but with so many IND bands, it's actually indeterminate, but they can't say that.
I'm wondering, how have people's Western blots from Igenex compared to other "standard" labs? Is there consistency in the bands that both look for? Are the Igenex blots actually more sensitive in that they will show positive on more bands than the "standard" labs will?
My Western blots have shown ++ on bands that a "standard" lab like Quest also show. But Quest did not show positive on bands that Igenex showed as only + or IND.
Posted by Lymetoo (Member # 743) on :
Grace, the Igenex test is more sensitive than the other labs AND they test for bands that other labs do not test for. Band 31 is an example.
Posted by grace1 (Member # 10347) on :
ah yes, lymetoo, i know they test for additional 2 bands. but in my "quest" to convince other doctors, I'd like to be able to say, see, the Quest Western blot and the Igenex Western blot actually are the same or similar enough in results, the only difference being the extra 2 bands considered by Igenex.
And I wonder, how are the Igenex tests more sensitive... is the test actually more sensitive (brighter bands), or is the interpretation more sensitive (call it positive on a weaker intensity level than "standard" labs will).
Posted by 5dana8 (Member # 7935) on :
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