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.
Posted by pme (Member # 31621) on :
Also...can someone explain to me exactly how this test works?
Posted by Lymetoo (Member # 743) on :
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.
Posted by surprise (Member # 34987) on :
I have heard it is 80% accurate.
I'm sorry------I know it is overwhelming, yourself and your child--
Posted by TF (Member # 14183) on :
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.
Posted by TF (Member # 14183) on :
Here is the explanation of the test according to the company:
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
Posted by Rumigirl (Member # 15091) on :
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).
Posted by Garden (Member # 31671) on :
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.
Posted by pme (Member # 31621) on :
Garden have you treated your oldest
I am now concerned about my other daughter
Ugh but marching forward
Posted by Garden (Member # 31671) on :
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.
Posted by t9im (Member # 25489) on :
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.
Posted by pme (Member # 31621) on :
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.
Posted by pme (Member # 31621) on :
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!
Posted by WPinVA (Member # 33581) on :
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.
Posted by pme (Member # 31621) on :