posted
So, I am confused and troubled. I have been on IV Rocephin for five weeks (with azithromicin and
flagyl). I was on two months of oral antibiotics before that (Doxy, Biaxin, Azithromicin). Before
taking the IV Rocephin, my CD57 level was 74. After 5 weeks of IV Rocephin, my CD57 count was
42. Both tests were done by Lab Corp.
I am also taking Dr. B's suggested vitamins and supplements.
Does that mean I am getting worse? In some ways, I have felt better this month (maybe better
memory, better mood, less anxiety, less brain fog and fatigue in the mornings. I have also felt
worse at other times (more fatigue, brain fog)
I have had Lyme for at least 6 years. I was diagnosed four months ago.
?????????????????????????
Thanks for any advice.
Posts: 35 | From baltimore, md & nj | Registered: Apr 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I don't think you can take one data point on the CD57. I just learned of an experiment where someone did the CD57 test everyday of the week for a week and found the results varied by up to 30 points. Look at trends, but I would not take that one result as a sign of defeat. Hang in there.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
to follow up on scott's comment, i'm someone who did the CD57 test every day, (same time, same lab, same meds etc) 4 days in a row. the results varied by 100%. in other words sometimes i was in the 30's, sometimes in the 60's.
so i get really incredibly frustrated by people (including LLMDs) making huge decisions like whether to be on abx or not by using just one data point on this one test, given that i think there's some real natural variability.
on the other hand, i do think the test is really valuable, and the docs working with it in smart ways (like the guy who figured it out and others), as one marker among many, (including the clinical picture!) are onto something interesting.
after that first 4 days (during which i was on abx) i then went off my meds and 3 weeks later repeated the 4 days of testing. even though the numbers still varied, the average of the results was significantly lower, indicating to me and my doc that i was probably not ready to be off abx.
if you are interested in using the test, i'd do at least a couple days in a row, then repeat that to evaluate.
we'll know more about this issue soon, because i believe a really good LLMD is going to be giving a talk on the very thing at the upcoming ILADS conference in october, and we should be able to get her findings soon...
by the way, i did the same thing with immune complexes c1q, and the same thing happened, tho' in reverse. there was more variability than i had thought htere would be, but the difference in the average on and off antibiotics was quite significant, and indicated the same thing that my CD57 average had. on abx it was half the average that it was when i was off them, indicating increased (unspecified) infection.
in short, don't freak out, i think your symptoms and multiple lab markers (if you are going to look at labs at all) should be used to evaluate how your progress is going... not just this one test.
best, flossie
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