posted
I was referred to a Neurologist by my LLMD. She ran a Lyme test on me through Stony Brook (her preference). I got the results in the mail, but no interpretation. Can someone fill me in until I can talk to the doc?
Lyme WB IGM = Negative Lyme WB IGG = Indeterminate (they use the CDC's criteria)
The IGG bands that were reactive were 41 and 93. The don't proved + indicators like IGeneX.
Borrelia Burgorferi C6 Peptide Antibodies, Total by ELISA with Reflex to IGG & IGM by Western Blot. Borrelia Burgorferi C6 ELISA = 0.09
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Didn't your LLMD already run IgeneX WB's?? You may already know this but Stonybrook is not a great lab for lyme testing.
Never heard of an overall indeterminate result for WB but band 93 is highly specific for borrelia.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I could be off base here, but I'll say it anyway. Since neuros are known for not being savvy about Lyme my guess is that this test was done to show you have treated Lyme and it is no longer a problem.
Why did your LLMD refer you to this doctor anyway? Your Igenex positive test is all you need for treatment and as mentioned already, Stony Brook is not known for it's Lyme testing.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
About the Neurologist... My LLMD, Dr. R in NYC, referred me to her. I wanted to see a Neuro to triple check that I didn't have something else going on before I started an IV.
She's at Columbia University and is one of the top female Neuros in the country. She's worked with Dr. Fallon at CU on many of his Lyme trials and though while not "Lyme literate" she's very "Lyme friendly."
Why she ran the WB via Stony... She believes that I have Lyme, but was curious to see what bands were active after being in treatment for 8 months. For whatever reason she likes to use Stony Brook.
I still have no idea what to make of the results. Very confusing without an apples to apples comparison from IGeneX.
TerryK
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Member # 8552
posted
Betty wrote: i edited my newbie links and have not shown that stoneybrook is NOT GOOD FOR LYME testing!
So, you have edited to NOT show that Stoneybrook is NOT GOOD FOR LYME testing??? Can you clarify please?
Basically, if a lab does not test for all the bands, does not list the degrees that a band shows up and only uses one strain of borrelia then they are not good for lyme testing in my view.
Doesn't mean they are a bad lab, just that their testing is incomplete.
They have a slide show on their website about their testing. They seem pretty much CDC standard lab.
They also state that anyone suspected of Chronic lyme should not be getting an IgM WB. In direct conflict with what I've heard from someone who is very knowlegable about this.
They are going to go automated for reading of WB very soon according to their slides. That is also not as accurate from what I've heard.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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Mathias
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Member # 5298
posted
Don't get hung up on the Stony Brook results. That is a very, very conservative lab.
The approach that your LLMD took is not uncommon for NY/NJ LLMD's. I was also referred to that same Neurologist (by a different LLMD) for the same reason (to rule out other conditions prior to the move to IV).
The good news was that there was not anything conclusive found that could be that cause of all of my symptoms and the neurologist agreed that I should start IV for the treatment of lyme disease.
The bad news was that the IV therapy (6 months worth) failed me because I was co-infected (with mycoplasma) and it wasn't known at the time.
My advice - be sure you are checked for all co-infections before you go through the rigors of getting a PICC, etc. There is an excellent NJ LLMD that specializes in co-infections.
PS - My symptoms first appeared during training for a mini triathlon.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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posted
Mathias, Thanks for your insight. Can you please PM me with the info on the NJ doc you mentioned?
I've tested negative (via IGeneX) for Bart, Babs and Ehrlichiosis, but I know that means very little. My LLMD is currently treating me for Babs based on symptoms, but I've never looked into it all very much.
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