posted
I just heard from Dr J and my eldest is + for Lyme via the blood culture test. This means borrelia was found in her blood. This is 100% positive.
Sigh.
She'll start 2 different abx and also pulse (weekly) a cyst-buster. Dr J said she was "fixable" but that she'd likely be on abx for 1-3 years. Not what I wanted for my little girl but we'll do what we need to to help her.
Still waiting on IgeneX results for the little one.
Any experience with the new blood culture test?
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm reading all kinds of positives here on this test. It's making me a bit skeptical honestly, but Dr B endorses it. Not sure.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The Advanced Labs test looks to be very reputable.
I assume there are likely going to be a reasonable number of positive result, in balance of all who test there - most of those getting tested have previously been diagnosed with lyme . . .
or if new to lyme, have really done their diagnostic homework to even get to the point of spending the money for this test.
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Garden,
I'm sorry to hear about your kids but so glad Dr. J. is on your team. He is amazing, from all accounts I've read, seen.
And that new test can really help you know for sure. Good luck with all of this, to you all. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Here's a recent post of some who have had the test:
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
If you test people who have lyme with this new culture, more than likely you will get a lot of positives. I would have said that a lot of negatives means our doctors aren't so hot at clinical diagnosis. But apparently that it is not true. Get it, seekhelp? It is a good thing that there are a number of positives!
Posts: 2888 | From USA | Registered: Mar 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
You may be right. That logic could go multiple ways. I guess I'm a skeptic in ways. I'll just leave it at that. We all have our own thoughts on the subject.
quote:Originally posted by poppy: If you test people who have lyme with this new culture, more than likely you will get a lot of positives. I would have said that a lot of negatives means our doctors aren't so hot at clinical diagnosis. But apparently that it is not true. Get it, seekhelp? It is a good thing that there are a number of positives!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Dr J told me he is now 3 for 3 - but he has only used it on three kids so far. He said they've been carefully selected... Most of the time the kids he sees don't meet the criteria (because of abx usage), but also, it needs to be the afternoon, it needs to be early in the week (no overnight shipping on Fridays), and it's ideal if the person is running a slight fever.
For whatever reason, my daughter's temp was 99.9 - not much of a fever, but enough for him to decide to try the test. I took both my children to see him, and he only ran the Advanced Lab test on one of them.
He did run Igenex Western Blot on both, and we'll get those results soon.
By the way, it took 2 1/2 weeks for results on the blood culture test.
While my older daughter's symptoms are subtle compared to some at this point (we've done soooo much with lifestyle, dietary changes, and nutritional support and we've seen major progress), I'm not shocked that she has Lyme. Sad, I guess but not shocked. In addition to having a mother with Lyme (and she's had symptoms since she was born), she had a tick bite last year - and we live in an endemic area.
Meanwhile, my little one had a clinical diagnosis of Lyme by an urgent care doc a few years ago (fever + bull's eye rash), and I'm confident Dr J will diagnose her with Lyme. She has migraines and joint pains...
Oh yeah, and my husband is now officially being treated for babs. I'm am seriously at my breaking point!!!
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I think that people need to have educated themselves about any particular test before they can have useful opinions about the results. This goes for all kinds of tests, but lyme tests in particular.
Opinions without knowledge are not very useful. We can see the result of such opinions with the IDSA, which says all antibody tests are accurate and positives are usually false.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
does anyone have info on cost for the lyme culture. I wrote the company but havent heard back yet?
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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![[Frown]](frown.gif)
but we'll do what we need to to help her.
![[Smile]](smile.gif)
but not shocked. In addition to having a mother with Lyme (and she's had symptoms since she was born), she had a tick bite last year - and we live in an endemic area.
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