This is topic Notes from our visit with Dr J in CT in forum Medical Questions at LymeNet Flash.


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Posted by Garden (Member # 31671) on :
 
I wanted to share what we learned in our recent follow-up visit with Dr J.

Rage, anxiety, rigidity, very strange transient rashes (like purple stitches or red streaks), can all be from Lyme flaring up. These are not necessarily signs that co-infections are making their presence known.

Stained teeth (dark yellow with brown streaks) are more likely from bacteria/the disease than from the antibiotics. (My children had this two months in to treating Lyme).

He considers the CD57 test to be worthless bunk. Mine had dropped to 21, and he said there was no significance to it at all.

On the Western Blot, the 34 band suggests that Lyme has been present for at least one year.

I also found out that the Omni New Haven offers a discount for people coming to see him.
 

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Posted by seekhelp (Member # 15067) on :
 
So he says the CD-57 is useless. Dr. S in CA praises it. The whole 'agreement' between LLMDs is crazy at times. Gets frustrating to say the least.
 

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Posted by surprise (Member # 34987) on :
 
Thanks for the information-
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

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Originally posted by Garden:


He considers the CD57 test to be worthless bunk. Mine had dropped to 21, and he said there was no significance to it at all.

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quote:

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Originally posted by seekhelp:
So he says the CD-57 is useless. Dr. S in CA praises it.

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Didn't he help develop the test and it's got his name attached to it? The S Panel??

or I am I mixing it up with another test??
 

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Posted by Lymeorsomething (Member # 16359) on :
 
I like the CD-57 when Lyme is the central issue. It was always accurate for me and I had longstanding Lyme with band 34 in the mix...
 

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Posted by surprise (Member # 34987) on :
 
My CD57 was accurate, too (<60 indicating chronic Lyme.)

Mine was 45.

I have heard the test is not 'reliable' for children- which may be persuading Dr. J's opinion.
 

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Posted by Robin123 (Member # 9197) on :
 
I asked Dr S about a higher CD57 score. He said the test count can be higher and the person still have Lyme, just as someone with AIDS can have a higher CD4 count and still be sick with AIDS.

I guess some doctors monitor a very low CD57 score, which can rise with treatment.
 

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Posted by Pocono Lyme (Member # 5939) on :
 
I currently don't have much faith in the CD57 and all 3 LLMDs I've seen didn't either although they tested mine regularly. Hopeful maybe that it may turn out to be useful in some way? Don't know.
Mine has increased since getting IVIG.

Lymetoo: I don't remember where I read it but I remember reading that many who have come up with a high CD57 and are still sick had an underlying strep infection.
Maybe some day I'll remember more.
 

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Posted by aMomWithHope (Member # 19255) on :
 
***Stained teeth (dark yellow with brown streaks) are more likely from bacteria/the disease than from the antibiotics.****

I don't agree with this. DD had horrible staining and plague build up while on abx--had to get her teeth cleaned every 3 months. Since being off abx and using only herbals, her teeth are fine.

I adore Dr. J, and he saved my dd's life, but I don't agree with this statement because, at least in my family, this was not the case.

But for what it's worth--the staining really was a non-issue because the teeth clean up fine--in other words, I wouldn't not take the abx just because of teeth staining (it's not permanent).
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

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Originally posted by Pocono Lyme:

Lymetoo: I don't remember where I read it but I remember reading that many who have come up with a high CD57 and are still sick had an underlying strep infection.
Maybe some day I'll remember more.

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