I had my CD57 taken in January and it was at 40. It was taken about a week ago and came back at 91. (I've been taking many supplements since January as prescribed by my Integrative DR.)
I had a few bands come back pos and some IND on an IGENIX test done about a month or so ago.
Just curious what peoples experiences are with CD57 going up/down and vice versa and how significant it can be if you have Lyme (which despite my igenix test) no Dr. has actually told me I have. (haven't seen an LLMD yet though).
Thanks!
Drew
Posts: 55 | From NY | Registered: Apr 2010
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posted
My CD57 drops to 18 when I am in a flare. It will go up to 40 when I'm not. Have no idea why.
Posts: 677 | From Virginia | Registered: Sep 2002
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Mine was 32 maybe 2 years ago and is 120 now. I believe it is very significant and very reflective of my disease process. I am still extremely ill but this has helped my LLD and I to confirm it is Bartonella and an autoimmune disease that are the primary issues, not the Lyme anymore.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Just so I understand, did you and your LLD confirm it was lyme when your CD57 was at 32, and now you think it is NOT Lyme, now that it's 120?
Just trying to understand how your doc came up with the autoimmune/Bartonella as primary over the Lyme.
Do you have a POS ANA as well? Because I do. I've had it for years, a solid 2-3 years before I was bit before a tick actually. But so far, after 3 different consults with specialists, no autoimmune disorder...which of course is good, but doesn't explain my symptoms (which are autoimmune/lymish in nature)...
Andrew
Posts: 55 | From NY | Registered: Apr 2010
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Ok...I am confused, as usual. LOL!
According to Burrascano's guidelines, it says they want lyme patient's CD-57 to measure above 60. It also says CD-57 remains low until LB infection is controlled. So, if you are above 60, does that mean lyme is eradicated or would the numbers be closer to the 200 mark?
I am scheduled to get my first CD-57 tomorrow, but not sure how long it will take to get the results.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Yes, I have positive Western Blot, it was Lyme, and I still have Lyme, but I think I've killed off a lot of it finally after 5 1/2 years of treatment including some extremely aggressive antibiotic protocols and IV antibiotics.
Judging by my high CD 57, continuing decline in health, and list of symptoms, along with positive biopsy and rising Bartonella titer, it seemed clear that Lyme was no longer the primary issue here to deal with.
I do not have a positive ANA though I did one time. The test for small fiber neuropathy is very specific, a punch skin biopsy; it is fairly new autoimmune disease as in it has only been recognized for the past ten years I believe and the test is fairly new and not widely available.
I am fortunate the LLD I see now is a neurologist and thought to do the test.
I believe I still have Lyme; I still tested positive on my last IGENEX test but only on the IGG that time, but when recently put on Rifampin for Bart and Lyme my joint pain, which I have not felt in a very long time, is off the charts, and I'm assuming that part is a lyme herx.
Just my opinion, though....from what I know. I see my LLD next week.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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WildCondor
Unregistered
posted
Save your money for treatment, this test does not prove much of anything and is wildly inaccurate.
If treatment will be the same regardless of what the test shows then why bother?
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
It was previouly thought that CD-57 was specific to Lyme. A high number indicated good immune response to the spirochete. A low value indicated poor immune response, and probably higher level of infection.
The latest thinking is that the CD-57 is not so specific. A good value (I forget the range) indicates a good immune response to a variety of pathogens, and lower infection load overall.
The test results are highly variable from lab to lab. My Lyme doc only lets her patients use one local lab for the CD-57.
My original CD-57 was off the charts high. She said my immune system was hyperactive and making faulty cells. That would seem to indicate auto-immunity, but my ANA is negative and I have no signs of an autoimmune condition.
I agree with WildCondor - not the most useful test.
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I am getting the CD-57 test but I am not sure what lab. My LLMD is sending paperwork to me to see if my primary care doc will pull the blood for Igenex and run the other blood tests through labs that my insurance covers.
HA, we will see how this goes, hopefully my primary care doc will do it but he is so against Lyme and had no idea what ehriclia was!
Anyway I was really curious what the CD-57 was and was thinking about asking, but you beat me to it!
So can any lab run the CD-57 or is it like the Lyme tests where they are only decent at Igenex and the like?
If my insurance covers it then I'll be getting it, I'm curious to know what my level is.
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