I was just curious what other people's experience has been with this. I'm fully aware of the unreliability of the tests, but I was reading someone's post recently where they said their lyme tests were "getting better" with treatment.
I've been CDC positive with either 7 or 8 bands every time I've tested over the past 3 years (at 4 different labs) so I had kind of resolved myself to the fact that my Western Blot would always be the same.
Thanks!
Posted by bncrump (Member # 20374) on :
My LLMD that I recently FIRED told me that my WB was getting better and that I had NO bands at all after 45 days of IV Rocephin.
Prior to treatment, I had ZERO IgG bands and 5 IgM bands. After treatment, I had ZERO IgM bands BUT a + Elisa, which I didn't have before.
Granted, these tests were not via IGENEX, they were out of MDL labs in NJ. I don't know how reliable they are.
Either way, even though my tests were "getting better", I was not and am not. I have found another LLMD and feel confident I am on the right track now!
Hope that helps!
Posted by purplemom (Member # 21064) on :
My first western blot from Quest on 6/26 was positive for 41kD IgM.
My second western blot was done on 7/29 at Stoney Brook University only 7 days after completing 200mg doxy BID it was positive for 41kD IgM and 58kD IgG (previously "nonreactive" on 58) I hear you should wait longer after completely antibiotics to test but not sure how much it matters?
The 1st test did not test for band 60 IgG but it was positive from Stoney Brook. The Stoneybrook results were labeled "indeterminate" A total of 3 positive bands, 1 IgM and 2 IgG
My understanding is a postive WB for IgM is 2 bands.
I have read reports of people seroconverting to positive after treatment in several places, one of which was Dr. B's guidelines. Not sure if it means anything going up one band in a month with treatment or if it is just a lab difference.
I will follow my WB to see what transpires with treatment.
Posted by Stoli (Member # 11175) on :
Thank you for the replies. Anyone else out there confused about this?
Posted by feelfit (Member # 12770) on :
I am not confused, at least I don't think that I am. My doctor told me the other day that he doesn't understand why WB's are repeated. It makes no difference.
I think once we have produced antibodies they will always be present. I *think* I am correct with this. This is probably why your 6-7 tests all show antibodies.
Anyone else here to help with this?
Posted by seekhelp (Member # 15067) on :
I for one would just like to repeat a WB 10x at a non-Igenex lab to see if anything ever shows up. lol. If I was zero for ten.....
I'm one who had a pretty serious shift in positive bands after being on Abx for 6 months and off for 30 days. So much more came back on my IgM and IgG side (only with Igenex)!
Posted by feelfit (Member # 12770) on :
Yeah Seek,
That was after an antibiotic challenge right? I *think* the poster is speaking of using a WB as a measurement for achieving wellness.
My second blot shifted a bit too. A band or two more on IgG. But still, after two years treatment I was still showing +9 bands......
Is this what you mean Carol?
Posted by Pinelady (Member # 18524) on :
I hope we get some new insights into this and
hopefully a new test to determine bacteria load at
the upcoming conference. I myself don't think it
matters if you don't feel well you are still sick.
But for those who think it could be something else
like cancer or other immune disorders it is
critical to them. And I understand that.
Posted by purplemom (Member # 21064) on :
When I posted I was not thinking about the WB showing wellness. I was wondering if I would be someone like seekhelp whose WB had more positive bands after antibiotic treatment and if I could use that as prove to all the stinkin docs who thoughts I was nuts AND even get my case reported to the CDC.
Posted by seekhelp (Member # 15067) on :
Purplemon, the regular docs still say I'm nuts and Igenex is a fraud lab over-reporting Lyme. Can't win. Anything from Igenex is highly suspect outside of the Lyme world. They have a bad, bad reputation probably due to slamming by IDSA.
It doesn't help when LabCorp showed zero bands on IgM and IgG!! Even if you're CDC positive and were treated for Abx for 21 days, you're cured automatically and don't have it anymore. You know that, right?
Posted by sutherngrl (Member # 16270) on :
Well my first WB before treatment showed no bands. Second WB, 2 months into treatment, band IGM 41 showed up. Now 16 months into treatment band IGM 23 shows up. I have not had any IGG bands so far. All WBs were through Labcorp.
My LLMD said it doesn't matter what shows up; it is still a clinical diagnosis. If you are ill, you are ill.
Posted by feelfit (Member # 12770) on :
Right SG. So, WB's should not be used to gauge tretment success or failure....we need something much, much, better...but right now, it's all we've got, all we've had since the 70's what a crying shame!/
Posted by Stoli (Member # 11175) on :
Thank you for all your comments.
I agree with you Fit. Since my WB is ALWAYS CDC positive, I'm unclear why my incredibly well-respected LLMD keeps running it. It seems like a waste of money. I wish I could remember who it was that posted their WB got "better" with treatment.
![[Smile]](smile.gif)
Can't win. Anything from Igenex is highly suspect outside of the Lyme world. They have a bad, bad reputation probably due to slamming by IDSA.