posted
This question has been asked many times before.
Hubby has tested negative from IGeneX, MDL, Stoney Brook, Quest or LabCorp (forget which), Immunosciences and a couple of other labs. Probably at least 10 tests in total. Only had band 41 show up as positive once with IGeneX -- every other band with every other lab was totally negative -- never had any indeterminate results.
But he does have one positive PCR from IGeneX (test done a couple of days before he was hospitalized with encephalopathy when he remained unconscious for 15 hours one day), 2 positive recombinant antigen tests from MDL (test no longer offered), plus SPECT scan and MRI's also say possible Lyme.
He also was ALMOST positive on an old test (no longer done) which compares CSF fluid and blood -- his ratio was .95 and a positive test would have been 1.0 or greater.
Editing to add that hubby just got back his most recent CD57 -- for whatever it is worth that result was 44 compared to 49 1 1/2 years ago.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
For me personally I think there are thousands of people sitting in wheelchairs and nursing homes or dead because they were told negative.
It is the specific bands that matter and if still neg if a challenge is not done I would throw that out too!
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
quote:Originally posted by springshowers: [QB] I am going to tell you what a doctor said to me. They said "everyone who takes the Igenex WB Test for Lyme will get a positive result ".
He's wrong!! Mine was negative!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Mine was negative but with some + ++ and 'ind' bands.
Posts: 234 | From BC Canada | Registered: Aug 2008
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Well my doc uses Labcorp for Western Blots. He uses Igenex for PCR, maybe Labcorp doesn't do those, I don't know. Obviously he is not that impressed with Igenex for WB's or he would use them.
Besides, LD is a clinical diagnosis!
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Mine was officially negative with some IND and + bands.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
I will mail you my results to show your doctor if you want.
With my history, my doctor was very surprised!
Posts: 819 | From East Coast | Registered: Apr 2009
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
My sister's was negative although I am sure she has Chronic Lyme disease. Mine was positive - MDL matched IgeneX results pretty closely.
As Bea said, this has been asked many times. You will find lots of people who have had negative results if you search the archives for others who have asked the same question.
I'd be surprised if your doctor has first hand knowledge since he has probably run very few IgeneX tests. He has probably fallen prey to the IDSA BS.
I would ask him to provide published results for you to look at. How much ya wanna bet that he has none.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
WELL WELL..
I thought that was a bold statement. And why would a doctor say that??? I don't know.
Mine was a positive..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
posted
Mine was negative - IND for 23/25 and 39, ++ for 41 and + on 58. (IgM)
A followup by labcorp showed no bands at all.
My sons, taken a year ago, was pretty similar for both IgG and IgM.
Your doctor is wrong, Igenex definitely sends back negative results.
Posts: 98 | From Maine | Registered: Jul 2009
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Hi.. 58 was also one of my numbers that showed up and never had it show up before.. I looked it up on the WB interpretation thread and it says
58: Heat shock protein.
What does that mean?? Anyone know?
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
mine was negative and 1 month before i was CDC positive from labcorp!!
Posts: 1127 | From atlantic city, nj | Registered: May 2008
| IP: Logged |
Mine was CDC negative from Igenex (lots of specific bands showed however and Igenex deemed it IgG posive).
Just had another done at Lab Corp and that was positive.
I'm really bothered by Docs that say this about Igenex...my PCP said the same thing when I first got sick.
Correct me if I'm wrong, but the only difference between the western blots at Igenex is that they test many more lyme specific bands than other labs and are more in-depth to aid in a clinical diagnosis.
I like to think of Lyme blood tests as supportive, not definitive.
All labs have checks and balances, they have to be certified and inspected by the govt.
With all this push from the IDSA side, if Igenex were a junk lab, it would be gone by now, imho...
In fact, Igenex passes these rigorous inspections with flying colors.
Posts: 108 | From Raleigh, NC | Registered: Apr 2008
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Wow.. Thats interesting.
That you would be Positive at Labcorp even on the CDC criteria and then run an Igenex and get a negative result Was both CDC and Igenex criteria negative when you ran the Igenex.
When I got my test back it had to Criteria. 1. CDC criteria 2. Igenex Criteria
I had a positive CDC at Labcorp too and then when i ran Igenex it was not CDC positive but I compared the bands and there was only one that dropped off that made the difference there. So I did not see that as a big difference really in testing..
And then Igenex criteria was positive.
Did you compare tests to see how many more or less bands you had and maybe it was also just one that made the difference between what they consider Pos or Neg. If your testing is close to those basic mminimum bands then just one band off one way or the other could push you over to Pos or Neg or vise Versa.
That was how it worked in my case anyway..
I am bothered by Doctors attitudes too that can be so obvious at times. I mean.. well.. sometimes I think.> grow up.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: I am going to tell you what a doctor said to me. They said "everyone who takes the Igenex WB Test for Lyme will get a positive result ".
I wonder what percent actually do come back with Negatives from the IGENEX lab using their criteria.
Please post your result if you dont mind and I can count them up and see what the precent is of this forum group.
Thanks much
Incorrect. Thousands of members here have received negative test results. Negative or positive isn't want matters. What matters is the individual bands, and the combinations of circumstantial evidence that supports the test result and the clinical diagnosis.
Negative tests take place all the time, and some even come out negative entirely -- no bands at all -- even though they came from an infected individual.
If your immune system has been devastated by steroids or other drugs/ or from having the illness many years, the antibodies may not even exist, and thus the test can't pick up what isn't there -- even if the bacteria itself is.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
I am wondering if the doctor was saying that anyone that is tested will come back with at least one positive band. Or a few positive bands.
Or that he never sees Igenex results that show every band negative.
There is a difference in positive bands vs positive overall report.
-------------------- 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
| IP: Logged |
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
murph,
how long have you been in treatment? are you seeing improvement?
im actually in remission and think i want to get retested, but then there is that little voice in my head that says DONT test if I feel good.
and as you can see from this thread..it can be futile.. lol
so far im feeling really great with a few bumps now and then.. (keeping my fingers crossed)
Posts: 1127 | From atlantic city, nj | Registered: May 2008
| IP: Logged |
WildCondor
Unregistered
posted
Lyme disease is a CLINICAL DIAGNOSIS. You do not need blood work to confirm anything.
If you have Lyme, you have Lyme, and you will know by your symptoms going totally away, when you are cured. Don't let a test dictate how you feel. Some of you post test results carelessly without even knowing what they mean. The fixation on testing has got to stop.
IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Well.. it was a comment that insinuated that your Final Result will be Positive from the Lab using their overall band criteria.
The impression I got was that it was so sensitive that it will just show up as positive for everyone.
So maybe they do not like using it for that reason and feel that the other tests are more accurate.
But.you all know as a group showed that there are plenty of negatives and even with some who most likely have lyme.
But anyway.. I am still learning about labs and ideas and doctors views as things also seem to be changing and evolving all the time and from doctor to doctor it can change. So the more you know the more empowered you can be.
Thanks for helping..
But also we all do order the tests and the doctors do use them and for some it can help get a diagnosis that helps them move forward with doctors who may not otherwise believe it or them.
So the test have a place in this Disease when you look at it from other angles. If you have a great LLMD who does not need that test to diagnos and you have support and are getting treatment etc then yeah you may not care about it.
So for new people you need to know that the diagnosis does not depend fully on the tests but it surely is worth getting it done to help prove your case if that is what you are needing to do for some doctors who you are trying to ring in to your corner. As well maybe for Disability cases too a lab result could sway their decision too.
Seems like we have to help educate doctors all the time in one way or another. Even some of the more experienced ones sometimes have some strong opinions on certain subjects one way or another.
Testing has its role that can help us. That is just how the system works a lot of the time and even doctors whether they should or not or whether it is right or not. Until that changes that is why we all want to have these tests and you have to admit when you see it in writing on a lab report it makes you feel as if you are justified and verified and given that reason for your symptoms. And you have to admit that doctors and family and others treat you differently when you can put a name on your disease and you can show you have it.
It has made a difference in my life and up until I had the testing done and people wanted to call it FMS or CFS that do not really have A test. Well its amazing how much less support and treatment options and overall support you get.
I dont know if others agree but this has been what has happened to me.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
See, testing should be done (in my opinion) if it's not a burden financially and it's accessible to the patient.
Knowing you have Lyme is different than accepting that you clinically have Lyme.
Lyme is a clinical diagnosis, but there is more than one type of test and while the Western Blot is the most well known, it only searches for antibodies. Other tests, including tests for co-infections, as well as PCR, blood smear and a variety of others, can help put the puzzle together by searching for DNA or the bacterium itself (which admittedly is very difficult).
We know that patients often have negative results on their Western Blot even though they're infected, because there are many who tested PCR positive or had some of the other tests. There are people who test negative on "everything" and still have Lyme and associated infections, but failed to follow treatment plans in Lyme Disease because they didn't trust the doctors judgement of the diagnosis. And why should they after they've probably seen 10-20+. Most seek a second opinion unless they come to Lymenet.
The majority of people sick with Lyme are not on Lymenet.
For those who can't just accept a clinical diagnosis -- which is many people -- you need as much objective information as possible to justify "investing" in your recovery from the angle of tick-born disease. It's expensive, real expensive, so who could blame them?
People in general will not be as committed without some evidence, even if that evidence is circumstantial and based on having done every other option, and test, and finding nothing. It only seems natural to then explore (by investment) any option to it's conclusion, including a diagnosis of Lyme.
Lyme is a clinical diagnosis, meaning your history, symptoms and the doctors judgment is currently the best indicator of diagnosing this disease, but that's often cited by people who don't mention all the possible ways to gather evidence of the disease. So remember that. In the end, if even circumstantial evidence is thin, you have to make a decision based on probability (or faith, trust -- whatever way you wish) to take a path.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Hi Spring,
My Igenix WB was negative - two IND, and a few +. CD-57 has gone from 35 to 17 in the past 8 months.
Have been tested for 3 co-infections and am pos. for all three.
Also, have lots of symptoms, hence the clinical diagnosis by my llmd.
Take care.
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
My Igenex WB was negative, although I had a few Lyme specific bands.
2 different WBs from Quest all yielded different lyme-specific bands.
I had a positive PCR from MDL.
And tested positive for multiple TBDs (not Lyme) through Quest.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
julielynne4
Unregistered
posted
I have heard comments like that, it is so ridiculous. Ignorance is all it is.
My western blot through Igenex was negative as well. However it was positive for coinfections.
I had a few positive bands.
Two of my children had some positive bands but overall negative results. Only one of my children was positive.
My friend's daughter just got her negatice result from Igenex as well.
IP: Logged |
posted
My IGG and IGM from IGeneX was positive. My husband's was negative.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[bonk]](graemlins/bonk.gif)
Printer-friendly view of this topic