posted
Mine is now 13. Lower than when I started treatment a few months ago. Has anyone had a lower CD57? Does it ever go to zero?
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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posted
3, then 32, 46, 60 and waitng for last weeks b/test results.
I think a better test is to have your Immunglobulins (IgG subsets 1-4) tested. IgM is the biggest antibody in the body. Mine is low but is recovering.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
I'm scared to get mine retested. Don't want to be discouraged.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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quote:Originally posted by canefan17: I'm scared to get mine retested. Don't want to be discouraged. [/QB]
Not much point in it anyway.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Mine is 23. It was in the 120's a year and a half ago. I personally think this test is a waste of time and $$$.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Don't worry too much about this test. I have lingered at around 55-60 for over 3 years. I once did a major multi abx regimen and my cd57 shot up to 150...I NEVER felt worse.
There are other tests that are more reliable to show progress.
posted
lymebytes, thanks for the article. The following was interesting and something I'd thought about:
"There may be large day to day variation in the CD57 level as I observed in a study looking at twice daily blood draws over 3 days for both Lyme patients and well patients. The level can increase or decrease as much as 50% within the same day. So the CD57 level can be a useful marker for some patients but it is not always reliable and consistent."
bigstan, thanks for your advice: Immunglobulins (IgG subsets 1-4) tested. I don't think I've heard of that being done for lyme.
Anyway, I was just curious.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I think I have heard of people getting a "1" or even a 0 for this test, though I don't know any of them personally.
Last time I got mine tested it was 15, and I am making progress now, so don't be discouraged. I haven't re-checked my CD57 though.
I do think that adding Low Dose Naltrexone has helped my immune system. Go to www.lowdosenaltrexone.org for info, or do a search on this site.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Yeah Hoosiers51, I was just reading about Naltrexone in the Singleton book. Can you be specific about how you think it helped? Thanks for reminding me to check out the site. I'm really glad you're making progress!
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
test is junk
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Hoosiers, if you wake up betw 2 and 4 am, when the opiate blocking is happening, do you feel awful?
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
I have gotten zero on this test. I have gotten as high as 65, when I was herxing regularly, then when it dips below 40, I stop herxing
The worse I feel, the higher the number. This makes sense to me at least, if your immmune system is low, you aren't going to have as much inflmation, hence you don't feel as bad.
For me personally, it has been a good marker of whether or not the medicine I am taking is working. Also, I seem to have some strange relationship between my Babesea, lyme and CD 57 (maybe becasue babesea can suppress immune system? don't really know...)
I agree that this test should not be used by itself to determine treatment, but for a few of us, it is useful.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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WildCondor
Unregistered
posted
I truly think this test is useless and does not mean anything. To test my theory that is is indeed flawed...I got mine tested for free recently for giggles and the result was 34 and I have never felt better! A friend of mine tested too (an extremely healthy triathlete who does not have Lyme disease and her result was 12.) When I was super ill it was like 48 then 130...fluctuates wildly and makes no sense.
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
With all due respect Wild Condor, your sample size is very low. I know this test doesn't mean much for some, but it might be helpful for others.
You know that one of former presidents of ILADS at least performed and published a small comparison study of AIDS patients (22 patients), new lyme patients (10 patients) and chronic Lyme patients (73 patients), and found there was a significant difference between AIDS patients, new lyme, and chrnoc lyme patients (who had lower CD 57 numbers than first two groups)
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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WildCondor
Unregistered
posted
My sample size was low indeed...however the overall sample size of hundreds of patients fluctuate wildly as well. I am well aware of the Stricker panel...look at the posts on other Lyme disease message boards about how wildly the results vary.
In my support groups, and thru all my online support and medical research that is the consensus, that it is indeed an inaccurate test. If you ask around, you will find that most LLMD's are not longer using the CD57 as a guideline or marker due to the inaccuracies.
You guys will save a ton of money on testing if you just go by how you feel, and treat accordingly and clinically.
Why spend $$ on more testing when you already know you are infected. Makes zero sense. Spend your dollars on treatment. You can get your natural killer cells tested (and that test is paid for) and get more of a clue if you really get suckered in to this line of thinking.
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Well..I have to say that just because someone feels well does not mean that their immune system is in line with that.
My father went to have back surgery. Perfect health other than needing some back surgery, and they blood work accidentally found that his immune system was severely depressed. In fact, when that blood work was followed with additional blood work, they told him that he was "pre lukemia."
The doctor was amazed that Dad wasn't getting sick from everyone around him.
They started him on once monthly gamuglobulin drip, and he has done that for the past 5 years or so, and is holding steady.
We would never have known about his immune system if he didn't need that little back surgery. He would have gone into full blown cancer, and maybe we would have lost him.
I'm just saying, you can feel great and have terrible stuff in the works.
God help us all.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
what is cd57? Is it a test that they run only if you have a definate Lyme diagnosis? I don't see that test on any of my bloodwork.
Posts: 10 | From michigan | Registered: Feb 2010
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
How the Low Dose Naltrexone seemed to help me--
after starting it, I seemed to have actual strong, defined herxes in response to my antibiotics (when I switched to new antibiotics that is...I didn't herx right away from what I was taking at the time), whereas before, I wasn't much of a herx-er. That made me feel like my immune system was probably working better, or recognizing the infections better.
To answer sickpuppy's question...I normally take it right before bed, and I sleep very soundly once I get to sleep, so I pretty much never wake up in the middle of the night.
Or if I do, it's just to use the bathroom, and I'm very groggy anyways and normally don't remember it (maybe b/c of Lunesta?)
But the few times I might have woken up, I have never noticed that I feel really bad.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
my cd57 is at 392.. before treatment at 216... a little bit crazy.. but im not really healthy.. i have cog. issues and feel like im often herxing.
greetz
Posts: 371 | From velocity of light | Registered: Sep 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My doc has never tested my CD57. That alone tells me its not that useful. From everything I've read about it, it does appear to be a waste of money.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Only had it done twice. IMO, accurate based on how I felt.
If you feel well, doesn't a low CD57 mean a higher chance of relapse? Just because you feel well doesn't mean your immune system is well.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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