If anyone had a positive Lyme PCR test, can you tell me the circumstances of when you got tested?
Were you previously on abx? If so, for how long? Was it done soon after a negative WB? This type of info.....
My Igenix WB and Urine Dot Blot were both negative, then I was on 8 months of abx with only fleeting bits of improvement. My LLMD doesn't feel another WB would be the correct choice at this point. A doc at Igenex agreed with this.
I've been off abx for about 5 weeks. On Valtrex only right now. Figured I'd take a break from abx.
The PCR seems like I'm probably throwing $ down the drain, but I'm still hoping for some validation.
Maybe I should get back on abx and then repeat the WB??
Any input on the best test for me at this point?? Appreciate any feedback!
Posted by Lymeorsomething (Member # 16359) on :
Man, I feel for you. This stuff can be maddening at times. Abx haven't done much for me yet either and I repeatedly test Igenex positive Igm...so who knows what's going on...
It may be time to give IV a whirl...
Have you ruled out co's? Which viruses do you have?
Perhaps you should try abx you haven't tried previously....
Posted by Leelee (Member # 19112) on :
quote:Originally posted by Tiramisu:
My Igenix WB and Urine Dot Blot were both negative,validation.
I don't have any advice to offer you, but I am wondering if your Igenex WB was sero-negative by their criteria or did you have some bands positive, just not the "right" ones.
Posted by Tiramisu (Member # 15082) on :
My WB was IgG 31 IND, 41++, 58+ IgM 23-23, 31, 41 all IND
These are all double-starred bands, except IgG 58. Still, Igenex negative.
Virals: high EBV IgG and borderline HHV-6
My llmd is very sketchy about co's. I hoped abx would make some coinfection sx stand out, but I'm only guessing Bart could be a possibility. He's not as concerned with nailing down whether I have Lyme or a coinf...he's more concerned with results.
I've had ring-shaped rashes (very faint) but they did not expand. Sometimes just rings, some were 2 rings overlapping. I was excited by these, but LLMD was still not convinced.
Lymeorsomething - that's crazy about your IgM. Hope you make progress soon.
Posted by Tiramisu (Member # 15082) on :
Anyone else?
Posted by Hoosiers51 (Member # 15759) on :
Have you ever read LymeMD's blog?
He had an entry where they were able to find lyme in someone's stomach....maybe in the tissue? He said he had a theory that it was found there because it can survive well in an acidic environment like the stomach...BUT...that is just a theory!!!!! Please keep that in mind.
I wonder how difficult of a procedure it is to get that.
Just thought I'd bring it up. I am in a hurry right now but I'll come back later and find the link.
Good luck!
Posted by duke77 (Member # 5051) on :
I had a positive LUAT test and PCR test from Igenix. I gave the blood for the WB and PCR before treatment. The WB came back negative, band 41++ and band 31 and 25 ind. I took abx during the LUAT while on abx which is the only it works I belive.
Posted by jarjar (Member # 8847) on :
Have you looked at Dr. C's post at the top about reading western blots?
I haven't read it inawhile but I thought many llmd's considered a ind as a positive just sending a weak signal.
Anyway I had a igenex pcr test and it came back negative but Dr. C took one look at my Western Blot and said bingo.
Posted by Leelee (Member # 19112) on :
quote:Originally posted by Tiramisu: My WB was IgG 31 IND, 41++, 58+ IgM 23-23, 31, 41 all IND
These are all double-starred bands, except IgG 58. Still, Igenex negative.
Virals: high EBV IgG and borderline HHV-6
Hi tiramisu,
I am still learning my way through all the things that go along with Lyme, so I hope you don't mind if I ask you a couple of a questions.
On your IgM, band 58 didn't show up at all, but on your IgG it was +. I always figured that once something showed up on IgM there would be some kind of showing (maybe weaker) on the IgG? I don't think anyone ever told me that, it's just something I thought up myself so if you could help me figure that out, that would be great.
My other question is this: my LLMD said he tested me for EBV, but I don't know where to find the results on Igenex's report. Could you tell me how it is listed so I can go back and check mine? I am curious b/c many years ago I had mono followed by Bell's Palsey.
Thank you so much. I hope you don't mind the questions.
Posted by Tiramisu (Member # 15082) on :
Thanks for the replies, all.
jarjar - I would be happy to consider my IND's as weak positives, as I think most LLMD's probably do. Lyme fits all my symptoms. My LLMD's hesitation to dx me just still makes me wonder.
Hoosiers- I do remember someone was going to have a biopsy sent to Igenex when they had an endoscopy done.
Leelee - IgM represents a newer infection and IgG is older. Though, I think people with chronic Lyme can still show positive IgM bands. I believe I was infected many years ago. See Igenex website for an explanation of Igg and Igm. I don't think Igenex tests for viruses. Your doc probably ordered it through the lab you normally use...maybe along with some routine blood work. Check that, and don't be afraid to ask for copies of any testing you get done.
Posted by Leelee (Member # 19112) on :
Okay, thanks Tiramisu, he probably did order it from Lab Corp. Goodness, I've become such a scatterbrain.
Posted by Tiramisu (Member # 15082) on :
^
Posted by mark kennedy (Member # 17426) on :
I had the urine pcr test done with igenix about 2 months ago.
I was skeptical to spend more money but my doc convinced me to try it as its the gold standard in his opinion minus a rash being found.
I started on a Thur. I took zith, doxy, and flagly at high doses for 4 days. Every morning I would collect the first urine of the day.
At about midnight on that first thur I got the most painful stomach pains. I have had menegitis and the pain from my stomach beat that 5-1.
I was in the fetal position for hours shaking from the pain. After doing some reading the next morning I attributed it to the zith.
I kept taking the doxy and the flagyl but stopped the zith. I decided I didn't have much faith in the test anyway, why be in so much pain.
My test results came back. I was positive from the Friday morning sample but negative on the other 2.
My doc called me and congratulated me on finally getting a diagnosis.
I now wonder if the pain was a herx? I wonder if I would have kept taking the zith if I would have tested positive on the other samples.
Its funny about this. My doc is 100% convinced I have lyme. I am about 90%. I have found too many articles saying the pcr test is not as good as my doc says. I still believe but some days doubt comes into my mind.
Thats my experience with the pcr test.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by jarjar: Have you looked at Dr. C's post at the top about reading western blots?
I haven't read it inawhile but I thought many llmd's considered a ind as a positive just sending a weak signal.
Anyway I had a igenex pcr test and it came back negative but Dr. C took one look at my Western Blot and said bingo. [/qb]
Be sure to read it .. esp the part about each band and the significance of it. Also look at his list of what he considers to be significant bands.
( he has two lists )
You have plenty of Lyme specific bands. Remember, if the PCR comes back negative, you could still have Lyme.
Posted by duke77 (Member # 5051) on :
quote: Its funny about this. My doc is 100% convinced I have lyme. I am about 90%. I have found too many articles saying the pcr test is not as good as my doc says. I still believe but some days doubt comes into my mind.
The LUAT is a very accurate test, not as accurate as a blood or tissue PCR, but none the less if its positive its positive if done by a good lab like Igenex.
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