posted
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.
-------------------- 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)
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posted
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.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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surprise
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posted
Thanks for the information-
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
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.
Posts: 13105 | From San Francisco | Registered: May 2006
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Pocono Lyme
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posted
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.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
***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).
Posts: 648 | From northeast | Registered: Feb 2009
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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.
- I've also heard it can be high from a coinfection. It's weird how far ranging the scores can be.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96173 | From Texas | Registered: Feb 2001
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TerryK
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posted
From what I've been told, inflammation markers along with the CD57 are useful but the CD57 alone is not.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
My doc is monitoring my cd57 as well as th viral loads and inflammation markes. She wants my cd 57 over 200. That's a long way and I'll give it a try since there really aren't a lot of options for a cure.
Posts: 148 | From AZ | Registered: Sep 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Mine is almost 300 and I am loaded with co infections. The cd57 means zip. It's only a benchmark.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Gets frustrating to say the least.
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