Over a year ago I had a WB done by labcorp and got IGM band 41 only. I was very symptomatic, extremely ill, so I got a clinical diagnosis and have been in treatment for 16 months.
Now I just did another WB also done by labcorp and now IGM band 23 shows up; but band 41 is not there this time.
Where did band 41 go? I know this can happen, but not sure why.
Needless to say, I am happy that band 23 appeared since this is a lyme only specific band; just wish they would have appeared together for a CDC positive result.
Anyway, any opinions as to how these bands can come and go; and do you think them showing up at 2 different times is still a good indication of LD. I am very symptomatic; and if I understand it correctly band 23 only shows up in LD.
I have read Dr C's info, but just wanted some feedback from other lymies.
I do feel more validated now that I have tested positive for both band 41 and 23.
And don't bother with the Igenex argument. The only difference in Igenex and labcorp is the added bands. The testing method is the same.
Posted by Tincup (Member # 5829) on :
"The only difference in Igenex and labcorp is the added bands. The testing method is the same."
Actually, not quite right. Not at all really. Sorry.
But to answer your question...
No.. never mind. Sorry again!
I just realized I can't speak to Labcorp tests because they are different and I don't want to give you inaccurate info.
Sorry about that.
But glad to know you are happy about the new band.
Posted by sutherngrl (Member # 16270) on :
Well actually TC I have gotten info from a researcher that labcorp actually developed this method of testing for Igenex.
I don't want to start a debate about labs. I'm just looking for opinions on the lab results. GOSH! Who cares which lab?
I'm not putting down the all mighty Igenex. This is not a post about labs. Its a post about test results.
Posted by feelfit (Member # 12770) on :
Me thinks you have Lyme SG. 23 Bb specific. You have all of the symptoms and other diseases that can cause the same symptoms have been ruled out.
Feelfit
Posted by Tincup (Member # 5829) on :
You said.. "GOSH! Who cares which lab?"
Hey.... maybe you could chill there little girl. And don't be biting my head off.
I don't want a debate about labs either.. especially right before supper and close to a full moon.
But... to say the labs and tests are all the same when they aren't... and to put out info that isn't correct, is misleading and not helpful to patients.
BTW- You said.. "Well actually TC I have gotten info from a researcher that labcorp actually developed this method of testing for Igenex."
Sorry. Wrong again. I don't know who this researcher is.. but no cigar.
I won't go into why etc... cause I don't feel like wasting my time and energy...
And I can tell obviously that you don't want to hear it from your post.
But I can't let inaccurate info just sit there when I know better... so I commented on it.
Go ahead and talk about the test results, that's fine....
I am just sorry I can't answer the questions because the testing methods ARE different. I didn't realize I'd have to speak to Labcorp tests till I thought twice and had already started posting.
That was my point.
Now... again.. I am GLAD, HAPPY, THRILLED you got another positive band.
And I am VERY happy it wasn't the 45 band!
Sooooooooooooo...
If you'll excuse me, I'm going to go dance on the table with my hat filled with fruit on my head... and celebrate your good news.
Posted by TerryK (Member # 8552) on :
One big diffence besides the added bands between IgeneX and LabCorp is the fact that IgeneX includes 2 strains rather than 1. If you happen to have the 1 that labcorp does not include, you will never test positive.
Not sure about this but I *think* IgeneX visualize the bands using a person rather than a machine. Supposed to be more reliable. Not sure again but I think LabCorp does it by machine.
Most LLMD's use IgeneX or MDL. If you don't want to use either, that's your choice. Those who use the more reliable labs may get more bands.
My recollection of what I've read and been told about why test results change is antigenic variability. This allows borrelia to evade the immune system.
Also, your body may or may not be producing the specific antibodies to that particular band at the time of testing. The test only reflects what they found in the small sample of your blood on that day. Doesn't mean you aren't producing the antibody, just that it was not captured in that small blood sample.
There may be other things to be added but that is what I remember off the top of my head.
Terry
Posted by sutherngrl (Member # 16270) on :
Thanks feelfit and TerryK for not blessing me out. I am just a chronicall ill person struggling to figure out exactly what I am dealing with. I didn't mean to stir anyone up.
TC's response just seemed a little sarcastic to me. I was just passing on some info from a reliable source. I try to remain open minded about everything. But forget that some people aren't.
Also these people that visualize these bands at Igenex, why do they have a hard time determining pos from neg? Why are Ind's necessary? Shouldn't it either be pos or neg? I'm not saying that to be hauty, I truly have always wondered about that.
Anyway, if too much gets going here, I will just delete my thread and forget getting any feedback on others experiences with test results.
I might just need to take a break from here for a while.
Posted by feelfit (Member # 12770) on :
About the IND SG, If there is no reaction, obviously negative. If there is certain reaction, as I understand, it turns black. In IND bands there is a reaction seen, but it is not as strong as the nice black positive....more of a light grey....they are reporting the slight reaction that they see.
That is how I understood it. I'm not the most eloquent with the scientific stuff, so maybe someone else will be able to explain it better.
Ff
Posted by coltman (Member # 21272) on :
quote: Not sure about this but I *think* IgeneX visualize the bands using a person rather than a machine. Supposed to be more reliable. Not sure again but I think LabCorp does it by machine.
Hmm sounds much less reliable. Machines when set up right are >> any person for tasks like that.
Anyways speaking of labs i had done quest showing 23 and 41 and then 2 weeks later same test showed nothing. It kinda coincided with theory that lyme should be done in evening though (since first one was 6 pm and 2nd one 7 am ).
I havent done igenex yet but I think the fact that they report the bands values more than simply "negative/positive" is better
Posted by IckyTicky (Member # 21466) on :
Well...I won't get into it about the labs, but i can say that my husband came back with 5 positive bands from IgeneX and not a single band present from LabCorp. And the blood was drawn at the same time.
Posted by seekhelp (Member # 15067) on :
Congrats on the more specific Lyme band of 23. It's a lottery we didn't want to win though, right?
I knew a LabCorp bash was coming soon after. lol. Igenex needs a PCR test for the STARI strain. Settles all bets. When someone like me has 8 Igenex positive or IND bands on an IgG WB and none at LabCorp few weeks earlier, either the machines at LabCorp are moronic pieces of metal that left thier brain at the door, or I have STARI strain or........(prefer not to speculate on possibility #3).
The person vs. machine argument doesn't do it for me. Machines are pretty damn efficient. People give more room for manipulation. The IND bands....don't know. I guess I'd have to BE at Igenex to see what they call an IND band. That would be interesting. I wonder if there are visual examples on their website.
Interestingly, take away all their IND bands an it would have a major impact on results in the eyes of LLMDs.
Ickyticky, is that a good thing? Things that make you go hmmmm... Again, we need a PCR for STARI to nail down Igenex once and for all.
TinCup, you keep bringing up that damn full moon thing. I have always thought that is the biggest bunch of BS on this forum....BUT BUT BUT, I've been feeling very ill the last 2 days. More Babesia symptoms. Maybe I'm the fool. My wife gave me a whippin' for metioning such a nutty thing. lol. I was told to get off the Internet. Posted by mojo (Member # 9309) on :
Gosh, SG was looking for some honest feedback - not sure why she got HER head bit off.
I wish I had a good answer to your question - I honestly don't know.
Just offering my support. This is a support board, after all.
Posted by seekhelp (Member # 15067) on :
Unrelated, but I looked up the full moon history on an '09 calendar. That stategy is out the door. For the last five months, I've felt BEST during days when a full moon was existent. lol. Another Lymenet myth.
As I indicated in my original post, I'm not absolutely sure that my comment about visualization of bands is correct. I try not to post something unless I'm sure but this time I did even though I thought maybe I shouldn't. Guess I should listen to myself. LOL
I've been looking around to see if I can find info on that and I see nothing that indicates that is the case.
I thought I read it somewhere a long time ago but apparently I'm not remembering correctly. I would disregard it for now unless I find something to substantiate it.
Sorry about that.
Terry
[ 09-03-2009, 09:30 PM: Message edited by: TerryK ]
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by sutherngrl:
And don't bother with the Igenex argument. The only difference in Igenex and labcorp is the added bands. The testing method is the same.
DISAGREE! The "method" may be the "same" but the LAB and techniques are not.
Posted by kitty9309 (Member # 19945) on :
When the Western Blot is run, they also have to run a set of positive and negative controls to make sure the test was done properly, reagents are acting correctly, etc.
An IND is reported if the band is lighter than the positive control, but stronger then the negative control.
Think: positive control= dark grey/black
negative control= no color seen
IND= a faint grey of any strength is noted, but less than the grey of the positive control.
In IND is a grey area, no pun intended.
They should just get the reporting criteria to include IND as a positive. (Working in the lab, I know it takes a lot to get changes to an already accepted procedure)
Posted by seekhelp (Member # 15067) on :
Changing IND to positives would cause too many CDC positives and have investigators on them like flies on ####. I'm not saying they wouldn't pass, but it would really open them up to scrutiny. Insurers would crush them like a grape as this may open the road to more IV treatment being needed based on criteria.
They probably tread carefully here. Mine was close to CDC positive. Sometimes I wonder if a black band looked a bit grey at the last minute.
Really unless one of us works at a lab and has intimate knowledge of scientific termsand testing processes, we have no idea. It's all speculation. We can say this is better, that is better, etc.
Posted by kitty9309 (Member # 19945) on :
On the other hand, maybe the IND should be left as is.
Repeat tests (though expensive) like they do for indeterminate HIV testing may be required.
Posted by coltman (Member # 21272) on :
quote: It is a very subjective test, requiring the human eye to decide if a faint band is seen. Some people, even in the lab, have bad vision. [/QB]
Thats is exactly why computers with optical sensors should be used. 100% accuracy
That does nothing for the accuracy of test itself though -as it is ****ty not matter what
Posted by seekhelp (Member # 15067) on :
I often wonder if I re-run enough WBs at Igenex could I win the lottery and get a CDC positive and possibly IV coverage? It's the $200 gamble vs $5,000 a month....give me 12 tries to get 2:1 on my money.lol. Buy the lab techs darker tinted glasses maybe?
Posted by feelfit (Member # 12770) on :
I'm just happy as heck that I described it correctly in laymans terms! Thanks Kitty for the informed explanation....can't believe that I remembered that info from 'somewhere'.
Seek, feeling really feisty are ya?
Posted by seekhelp (Member # 15067) on :
Yeah Feelfit. lol. I'm not kidding about the 12 test process though. It may really pay off if you need IV treatment and have tough insurer guidelines.
I think my statements are reality though regarding the implications to insurers if more CDC positives were issued.
Posted by kitty9309 (Member # 19945) on :
coltman-
Thanks for saving that quote. I went back to edit while looking something up and deleted it.
I found this. It is the procedure for the Lyme WB used in Europe.
Look at how many steps there are! Imagine how many errors could be made at any step!
The strips also do not always line up correctly for comparison to the control strip. Then the tech needs to do some "finessing" to get the test to come out... Scarey stuff, and not just this test, either.
Here is the link and there are pics of the strips and reporting sheet.
There is even a weak control in addition to positive and negative, to make things more complex.
Reading about the HIV WB, it too has many problems with indeterminates.
Need_ better_ test!
Posted by seekhelp (Member # 15067) on :
Wow, eye opening Kitty. Thanks for sharing. No more hijacking SG's thread... Posted by sutherngrl (Member # 16270) on :
This thread didn't turn out anything like I expected. I wasn't bashing Igenex, just making a statement that I thought was intersting and from a reliable source.
Anyway, here is a question regarding a CDC positive on IGM. At labcorp if you have 2 of the following 3 bands.......23, 39 or 41 it is an IGM positive. What if you have 2 of them but from 2 different test? Does that equal a CDC positive? Or would the CDC make up some excuse why this doesn't count?
Thanks to those of you that didn't slash me through the heart. It wasn't my intention to cause a dispute. You never know what little thing is going to set someone off around here.
Anyway, it kind of took all the excitement out of announcing my very lyme specific band. Not that, that should be exciting; but some of you know what I mean.
Posted by btmb03 (Member # 18394) on :
Sutherngrl, I think I understand your question. I doubt the CDC would "combine" test results..is that what you mean?
I had one common band from LabCorp and Igenex and the others were different. If they had been "combined" I would have been CDC positive.
...and hey, *I'm* excited for you, I know you've questioned your diagnosis (like moi) so hopefully this should help you regain some of your drive and to fight these illnesses. Take care!! Posted by seekhelp (Member # 15067) on :
SG, no you can't combine bands from two separate tests to = a CDC positive. Even if you could, the IDSA can put us through the ringer and discredit the findings.
I recall TinCup saying officially you need evidence of a rash, CDC positive on both WB IgM and IgG, positive IFA, and maybe even finding Lyme in spinal fluid? In other words, an impossible combination of events for 99.9% of us here.
I appreciate your insight from your friend on the LabCorp/Igenex connection. Regardless, getting a 23-25 band from LabCorp is an accomplishment and I believe further proof of your Lyme diagnosis. How did your IgG turn out? Any new activity?
At the end, response to treatment is important and I remember you said things were getting a bit better on Doxy. Posted by gemofnj (Member # 15551) on :
SG,
Congrats on the band #23. Why #41 is missing? Well I agree with Terry K.
You may not have been producing antibodies on that day for some reason.
It is usually recommended to get blood drawn on a monday so that it is processed quickly and cant sit around over the weekend.
here is another good photo of IND from the better health guy:
quote: Evaluation of Two Commercial Systems for Automated Processing, Reading, and Interpretation of Lyme Borreliosis Western Blots
Our findings show substantial agreement between the results of automated and visual interpretation of Lyme WBs. Both systems we evaluated demonstrated comparable results, excellent reproducibility (data not shown), and similar features and total average assay times (Table 5). We should emphasize that both systems are designed to aid in band identification and result interpretation and yet require a laboratory technologist to review and verify results prior to reporting. In our experience, the ViraScan software application was more intuitive to operate and required fewer result modifications by the reviewing laboratory technologist (Table 3). This difference may be due, in part, to the specific manufacturer's recommended cutoff settings used in our evaluation. Clinical laboratories should perform their own thorough evaluation prior to implementing an automated system, since the appropriate cutoff settings may differ between regions where Lyme disease is and is not endemic.
Posted by Lymetoo (Member # 743) on :
I didn't mean to dismiss your test result. Take it and run! Posted by sutherngrl (Member # 16270) on :
btmb03, thank you soooo much for understanding. I have been on an emotional roller coaster ride, like most of us and getting a very specific band brings on an array of mixed emotions and it just helps to know that others understand.
Its kind of like you want to cheer and cry all at the same time.
And I'm sure your right, that the CDC wouldn't accept it from 2 different lab test, even though it came from the exact same vein. They would want some kind of scientific evidence to prove who knows what.
Posted by kitty9309 (Member # 19945) on :
Sorry not to comment on your result. (I am jealous- bulls eye and only 41)
It is a bummer that band 41 of all bands would not be present when you finally get a Lyme specific band...
I don't bash any of the labs on this. ( and I work for one of them) No lab has ever found antibodies for Lyme in my blood.
Posted by btmb03 (Member # 18394) on :
No thx necessary, it *is* truly validating to have this type of test result...I don't know of another illness that hits us right at the core and messes with our emotions.
Now take several deep breaths and .... let it all sink in. Your doctor will help you do the rest! Keep fighting!!
Posted by alliebridge (Member # 9103) on :
I myself have not tested positive (Igenex or otherwise) in three whole years and yet I broke out in two EM rashes (herx) this year while on IV abx.
We need *accurate* tests.
Posted by sutherngrl (Member # 16270) on :
Kitty, well don't give up. I have been in treatment 16 months before getting the 23. Also a bulls eye is proof positive. So there you go.
Seek, nothing on IGG! I was sort of kidding about the CDC considering it a positive. You probably gotta have a bullseye, a positive Elisa, a positive WB, pos pcr, pos spinal tap, and the actual tick that bit you along with a sworn statement from the IDSA to get counted.
Posted by kitty9309 (Member # 19945) on :
quote:Originally posted by sutherngrl: Seek, nothing on IGG! I was sort of kidding about the CDC considering it a positive. You probably gotta have a bullseye, a positive Elisa, a positive WB, pos pcr, pos spinal tap, and the actual tick that bit you along with a sworn statement from the IDSA to get counted. [/QB]
Hilarious!
Posted by feelfit (Member # 12770) on :
Southern Girl!
Posted by seekhelp (Member # 15067) on :
Too funny SG about the IDSA. I'm just shocked you forgot all that wouldn't be enough proof unless your knees are swollen to 3.75x normal.
Even with all the other proof, odds are we are pyschosomatic and that tick bite brought on a suppressed childhood experience manifesting neuro symptoms because 90% of the general public often complains of muscle tightness, tingling, fatigue, chills, air hunger, weakness, facial paralysis, sleep deprivation, crazy anxiety, neuropathy, etc. Who doesn't have these 'minor' symptoms?
Oh and by all means you better live in a region where ticks exist. If you have one of those yellow no ticks allowed signs in your city, it ain't Lyme.
Posted by lymielauren28 (Member # 13742) on :
Ya'll are cracking me up! Suthergirl, haven't you learned anything?! It wouldn't make a hill of beans if you DID have a bullseye rash, a positive WB, a positive Elisa, a positive spinal tap, a positive PCR, and the tick that bit you along with a sworn statement by the IDSA.
You know why? Because you live in MISSISSIPPI! DUH!!! Everybody knows it's impossible to get Lyme if you live in Mississippi!
But seriously, I'm really glad that band 23 showed up - that should put your mind at ease now.
As far as WHY it popped up and band 41 was mysteriously missing - that's all about the antibodies. You could probably be tested again tomorrow and have a completely different result.
Celebrate your "victory" girlfriend...you really HAVE been on the right path all this time!
Lauren
Posted by JamesNYC (Member # 15793) on :
Why? Because the tests are unreliable, inaccurate, and imprecise. This thread was waaaay longer than it needed to be.
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[/QB]![[Big Grin]](biggrin.gif)
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Things that make you go hmmmm... Again, we need a PCR for STARI to nail down Igenex once and for all. ![[Cool]](cool.gif)
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Lauren