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» LymeNet Flash » Questions and Discussion » Medical Questions » Dr. J. and test results for my daughter

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Author Topic: Dr. J. and test results for my daughter
pme
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What a roller coaster

Still waiting on a call back, but advanced lab results were positive for Borrelia.

How accurate are these tests?

I am in a little bit of shock here, but since we saw Dr. J she has gone downhill.

Just reeling but I thought I would let you know.

--------------------
Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009)
Dx with chronic Lyme May 2011.
LLMD April 2012, Treating with omnicef/zith
Lots of supplements!

Posts: 640 | From Connecticut | Registered: Apr 2011  |  IP: Logged | Report this post to a Moderator
pme
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Also...can someone explain to me exactly how this test works?

--------------------
Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009)
Dx with chronic Lyme May 2011.
LLMD April 2012, Treating with omnicef/zith
Lots of supplements!

Posts: 640 | From Connecticut | Registered: Apr 2011  |  IP: Logged | Report this post to a Moderator
Lymetoo
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It's suppposed to be the most accurate of all. Can't remember the basics of it. It's new.

If she is on meds, that would explain her "downhill" trend.

--------------------
--Lymetutu--
Opinions, not medical advice!

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surprise
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I have heard it is 80% accurate.

I'm sorry------I know it is overwhelming, yourself and your child--

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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TF
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Advanced Labs is a culture test. That means that it grows whatever is in the blood sample.

In your case, it grew the lyme germ. So, there is no doubt about it, 100% positive that your daughter has lyme.

If a person gets a negative test, that is not 100% positive since it is possible that there weren't any lyme bacteria in the blood sample but the person still has lyme.

So, that's why the test is only 80% accurate--due to the false negative that is possible.

The positive is 100% accurate. You can't grow lyme if there is no lyme to grow. It's just like a throat or sinus culture. If it grows a particular germ, there is no question that the germ came from the patient.

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TF
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Here is the explanation of the test according to the company:

http://www.advanced-lab.com/news/borrelia_culture_update.php

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pme
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Docs office said that it meant that there is clearly an active infection. They want to wait until the other bloodtests come back before we decide a course of action. So no treatment yet

I
This was the first bloodiest that came back. I thought it would be the last and take the longest The docs office said that it was surprising it came back positive so quickly and about just how active the infection is.

Explains a lot

--------------------
Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009)
Dx with chronic Lyme May 2011.
LLMD April 2012, Treating with omnicef/zith
Lots of supplements!

Posts: 640 | From Connecticut | Registered: Apr 2011  |  IP: Logged | Report this post to a Moderator
Rumigirl
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At least she will be in good hands! Please, please read the sticky about tick bite prevention at the top of Medical Questions. Given that you guys live in CT, you need to do EVERYTHING possible to prevent further tick bites. Even when you are on treatment, it is still a huge risk to get a further bite.

Onward and upward (I know many ups and downs along the way).

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Garden
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Thanks for sharing, sorry about the news. At least you know for sure now - my greatest fear was treating my kids without proof.

Dr J gave my older one the same test, with the same results.

--------------------
Garden

"Fibromylagia" for 8+ years
Pos IgeneX WB per both Igenex and CDC
Pos Neuroscience MyLymeImmuneID
Started tx for Lyme in March 2011

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pme
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Garden have you treated your oldest

I am now concerned about my other daughter

Ugh but marching forward

--------------------
Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009)
Dx with chronic Lyme May 2011.
LLMD April 2012, Treating with omnicef/zith
Lots of supplements!

Posts: 640 | From Connecticut | Registered: Apr 2011  |  IP: Logged | Report this post to a Moderator
Garden
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They are both being treated by Dr J

It's way past my bedtime now, but I can PM you her protocol if you are curious tomorrow.

--------------------
Garden

"Fibromylagia" for 8+ years
Pos IgeneX WB per both Igenex and CDC
Pos Neuroscience MyLymeImmuneID
Started tx for Lyme in March 2011

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t9im
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Hi pme:

When our daugher first saw Dr. J in May of 2010 I would say she continued to go down hill till Jan of 2011.

We had drug combos and babs would be better but lyme neuro worse. It was terrible as a parent (never mind our daugher) to see this and difficult to trust any MD after what we had gone through.

Fortunately we started to see improvement but from Jan 2011 to May 2011 (so one year) there was plenty going on with adverse reactions to meds, etc.

It is a long process.

Good luck and I hope your daughter is well soon, unfortunately it is long process.

--------------------
Tim

Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
pme
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Tim...thanks for the input. I don't know yet what they are recommending.

We are only about 20 minutes from you here. I spend a lot of time at Whole Foods in g-bury.

What were your daughter's initial symptoms? Did she have a bite?

I am unfortunately in the middle of the long process myself. Stopped working in February and now between me and her (and wondering about my other daughter) I don't know if I will be able to go back anytime in the next year.

Garden...I would love to hear how things are going when you get a chance. PM me anytime.

--------------------
Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009)
Dx with chronic Lyme May 2011.
LLMD April 2012, Treating with omnicef/zith
Lots of supplements!

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pme
LymeNet Contributor
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OH! and TF...thanks for the explanation.

I am laughing at the number of times you used 100%

You know what a hard time I have had believing that I have Lyme, and now this. I appreciate how you hit things straight on. I need it because of my continued brain fog!

--------------------
Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009)
Dx with chronic Lyme May 2011.
LLMD April 2012, Treating with omnicef/zith
Lots of supplements!

Posts: 640 | From Connecticut | Registered: Apr 2011  |  IP: Logged | Report this post to a Moderator
WPinVA
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PME - I am very sorry for the diagnosis but glad that you have a clear path now and that you got in to see Dr. J.

If you don't mind sharing, what are your daughter's symptoms that led you to test for Lyme? I am the one with Lyme but I have been wondering about my two kids.

Posts: 1737 | From Virginia | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
pme
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will pm you. I don't mind

--------------------
Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009)
Dx with chronic Lyme May 2011.
LLMD April 2012, Treating with omnicef/zith
Lots of supplements!

Posts: 640 | From Connecticut | Registered: Apr 2011  |  IP: Logged | Report this post to a Moderator
   

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