After seeing my PCP and telling him what my LLMD said, he talked me into taking another WB test from his lab to compare the results found from Igenx. The test from Igenx was done late January and was Igenx positive but not CDC positive.I have been on Doxy since then, My new lyme tests were taken last week and tested at Mayo, elisa and WB both came back totally negitive. that does not add up??
Posted by Lymetoo (Member # 743) on :
Hold the Mayo!!!! They are worthless when it comes to Lyme disease. They DO NOT want to diagnose OR treat Lyme disease patients.
The ELISA is about 40% accurate... at BEST.
I would take the positive Igenex test and get treated. (and find a better PCP)
Do you want to stay sick???
Posted by MorningSong (Member # 19989) on :
Mayo tested negative for Lyme for me, but LabCorp and Quest Diagnostics Western Blot tested positive.
Posted by Pinelady (Member # 18524) on :
Did you actually see the test? My doc tried to tell me mine was neg. when it said Pos.
I would also take Mayo's with a grain of salt.
I do not know why they keep trying. For 25 years now they have not been able to get it right, no reason to start now..
If you are symptomatic treat.
Posted by sutherngrl (Member # 16270) on :
Mayo "undiagnosed" me without even seeing me or knowing me! No kidding!
My cousin went to Mayo because he probably has LD. He told them about his cousin(me) having LD. They diagnosed him with some really rare unheard of genetic disorder that has no treatment; and told him they were 99% sure that his cousin(me) did not have LD. They said since he had this genetic disorder, I probably do too. No one else in our family has a rare genetic disorder!
So I say Hold the Mayo too!
Anyway, LD is a clinical diagnosis, and the reason it is, is because of the horrible inaccuracy of the test.
Also, did you actually see your last test? Or, are you just taking their word for it? Always get a copy of your test results.
Posted by MariaA (Member # 9128) on :
hey, what's the name of Mayo's commercial lab again that runs these? Fairsomething? I was helping out a patient in Minnesota but missed the name of the lab
Posted by Lymetoo (Member # 743) on :
Maria .. It's called "Useless C&%$!"
just kidding! I'd like to know too!
Posted by 1hunter (Member # 24438) on :
not sure of the mayo lab name, but how could the labs test so different? What could Igenx be doing differently?
Posted by Pinelady (Member # 18524) on :
Mayo Medical Laboratories ♦200 First Street,S.W. ♦Rochester, MN 55905
Posted by sutherngrl (Member # 16270) on :
As far as I know, Mayo has never diagnosed anyone with LD. They are obviously making money by ignoring it as a possible diagnosis.
Posted by seekhelp (Member # 15067) on :
Igenex just has a better microscope and the people they hire are half-blind. KIDDING.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by 1hunter: not sure of the mayo lab name, but how could the labs test so different? What could Igenx be doing differently? [/QB]
I would say they have perfected their process so that your blood gets a fair shake at revealing there is Lyme Bb there.
Mayo does NOT want to dx Lyme .. and they won't treat it even IF they were to find it.
Posted by Keebler (Member # 12673) on :
- You asked: "What could Igenx be doing differently?"
Igenex tests for many bands that your other labs just ignored. Igenex just has better tests, better equipment, better procedures. They also test samples that have not been sitting around over the weekend. You can't say that of all labs.
You do not need more tests but, sadly, the less professional ones will be in your file and probably hamper your care.
I'd find a new GP who at least has a basic understanding of lyme.
Your local lyme support group may help. But, I see from another post of yours that you are actually doing well with just one minor symptom. That's great. But stick with your LLMD until he says you are clearly out of the woods. Don't assume anything and continue excellent self-care. -
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