Well, I've been treated with various Abx over the last 2 years, and like many, I 've been like a yo-yo...some brief improvement followed by relapse (which is where I'm at right now)
Dr. P. ordered a CD57 panel last week and low and behold my numbers were pretty low 40/ul (normal is 60 to 360/ul)this after 2 years of treatment
Oh well, I guess we're back to the drawing board. Wondering how many of you have been using the CD57 as a marker for treatment progress?
Thx, Dave
-------------------- Thx, Dave (Now in VA.) Posts: 207 | From Lynchburg, VA. | Registered: Jun 2004
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SForsgren
Frequent Contributor (1K+ posts)
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posted
I think it has been shown to be less than useful in children, but in adults, many LLMDs that I respect still do find value in the test. A low score may not always be indicative of any specific outcome, but often, it does correlate to the likelihood of relapse at the end of ABX treatment.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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trails
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Member # 1620
posted
I agree with Cave and have had a few ILADS LLMDs who have told me the same thing.
Get the test done just in case they DO figure out what it exactly means and how it can help us understand things in the future, BUT
Dont believe it will tell you anything right now.
Go with what you FEEL in your body, not #s.
It also depends who does the test. Not local labs.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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thanks for your reply but, with all due respect, I'm not so sure I would go as far as you've been going on this subject. I've read some of your other replies on this and I would have to say that there are LLMD's (top of the line one's) out there that do see significance in this testing.
My LLMD is one of the best and a very prominent past office holder with ILADS...I know you would know him
He feels that in many cases, that a low result IS indicitive of bacterial load as well as treatment progress, and would warrant continued or revised treatment.
No offense, but I would take his viewpoint and expertise on the subject any day.
Don't get me wrong, I think he would agree that the marker in and of itself should not be used to be purely diagnostic but, to indicate that it is NOT an effective marker in treatment modality, I believe based on what he has said and observed (and he's one of the foremost researchers) is inaccurate.
Thx for listening
Dave
-------------------- Thx, Dave (Now in VA.) Posts: 207 | From Lynchburg, VA. | Registered: Jun 2004
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lymeinhell
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Member # 4622
posted
I'm a 1/19 abs.... Before treatment, I was 2/22abs. I've had it checked quarterly with no improvement (in fact, the ratio went a bit lower if that's possible). If we went by that theory, I guess I should be dead, huh???
But guess what? I feel flipping fantastic.
I even consulted an immunologist with my pile of test scores because I was scared of what the almighty number meant...
And he said to me "If it ain't broke, don't fix it. The CD57 is one teeny little picture of your overall immunological profile. With someone as healthy as you showing no symptoms, I really wouldn't do anything."
I've been off abx since 11/2004. That's 15 months now - no relapse and I live quite the normal life.
I think the test is useful in that it would help support a lyme diagnosis, as low CD57 is common in Lymies. As to the number being a barometer of health/relapse, I'm proof that theory is wayyyy off.
Go by how you feel and forget the test. Live healthy, eat right, RESTORE YOUR MAGNESIUM LEVELS, detox, exercise, stay away from tap water and get at least 8 hours of sleep each night.
But what do I know anyway???
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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trails
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posted
The two LLMDs who said to me almost exactly what Cave said are both ILADS BOARD members and work closely with all the other board members.
Lymeinhell is a good example of how this test can and should not be used for ANYTHING just yet.
I am a good example as well. I tested above 200 when I was feeling my worst. I retested and was 64 while still feeling crummy.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Didn't I read somewhere that your Dr. is Dr. S. Are you saying you disagree with your own Dr.'s conclusions.
I'm sorry but, my Dr. is the former president of ILADS and I know he consults with Dr. S. and agrees with him on a lot of things.
Where are you guys coming from? Are you doing the research that is going against what these Drs. are postulating.
Look, I'm not trying to pick a fight here but, we are Lymies, yes educated (quite possibly more than alot of our medical establishment) but Lymies just the same.
We do not see the plethera of patients that these guys see on a day to day basis to be qualified to make the kind of statements that we are making on this forum.
Now, if you're going to make these claims then reference research that supports your statements.
One last point is that just as in any study there will never be 100% compliance or confirmation. Most research postulates it's findings based on a MAJORITY of conclusion.
I'm sure there are some like LymeinHell that may go against the established control but, that is to be expected.
Making statements like "we can't look at that test just yet as being conclusive" when there are top of the line LLMD's saying it can be helpful is irresponsible.
Thx again for listening
-------------------- Thx, Dave (Now in VA.) Posts: 207 | From Lynchburg, VA. | Registered: Jun 2004
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Part of the issue may be what a normal number is in someone before they have Lyme. I know what the references should be, but where was I on Stricker panel range 5 years before I had Lyme. I am a 12 now (so low), but maybe I was only 40 before.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 9016 | From Illinois | Registered: Aug 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
"Decreased CD57 lymphocyte subset in patients with chronic Lyme disease.
Stricker RB, Winger EE.
Department of Medicine, California Pacific Medical Center, 450 Sutter Street, Suite 1504, San Francisco, CA 94108, USA. [email protected]
BACKGROUND: Chronic Lyme disease is a debilitating illness caused by tickborne infection with the spirochete Borrelia burgdorferi. Although immunologic abnormalities appear to play a role in this disease, specific immunologic markers of chronic LD have not been identified.
METHODS: We evaluated 73 patients with chronic LD for lymphocyte subset abnormalities using flow cytometry.
CONCLUSIONS: A decrease in the CD57 lymphocyte subset may be an important marker of chronic LD. Changes in the CD57 subset may be useful to monitor the response to therapy in this disease.
It would not allow me to post the entire write up as it has too many parenthesis...
May be is the key word here in the conclusions.
Also 73 patients does not make a very large study group.
I welcome your debate, but find it offensive to say that voicing our opinions is irresponsible.
This is an ongoing debate within the Lyme community and also with ILADS docs. Including debate between "famous" Dr B and Dr S about this specific test. I do not have a paper proving this, my doc has talked with me about conversations he has had with these docs about this test.
We (my LLMD and Me)have decided to do the test once a year as a marker and see if Dr S or anyone else can find a definitive use for this test. As of yet no one knows exactly what to do with the patient's results or how to interpret them. may bePosts: 1950 | From New Mexico | Registered: Sep 2001
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It is not my intention to offend anybody that is sharing their opinion, but when statements are made like
"Lymeinhell is a good example of how this test can and should not be used for ANYTHING just yet"
and
"BUT Dont believe it will tell you anything right now"
these are not opinions, but they border on statement of fact.
In my book, "may be" coming from a research MD that spends all his time treating, studying, speaking on, and researching this insideous disease is pretty strong and when my Dr. who is the former president of ILADS and one of the most respected LLMD's out there says he believes there is a correlation and a marker that should be considered....I think it only makes sense to stay open-minded about it.
I do want to apologize for coming off as offensive. I'm just sick and tired of this blasted disease!
-------------------- Thx, Dave (Now in VA.) Posts: 207 | From Lynchburg, VA. | Registered: Jun 2004
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valymemom
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posted
The llmd that my son and I see trained with Dr. B. There has been no CD57 done on us. When my son started with a new PCP who specializes in CFS he tested him. ( I think I read CFS community of doctors use the test, also.)
My son who sees Dr. B. did have the test done but I think it is just to see patterns. (His former VA llmd never ran the test.) I will be interested to see if after a year of treatment (this July) the test is repeated.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
okay...I am chilled down some too. was actually able to go out in the sun and do some gardening---super positive!
I think I AM open minded about this test. If I wasnt I wouldnt be having it done once a year.
What I am saying is that I would like to see the research stating exactly WHAT these results mean. What does this marker actually MEAN---how should we interpret them---what should we do with the knowledge gained from them??
There in lies the difficulty of this test--it might point out that some chronic LD cases have/show low CD 57 numbers, but what can/should be done about this?
MORE ABX? less ABX, more suppliments...nothing???
ANd what does this actually mean, especially since more and more of us here at lymenet have been posting that the # does NOT correlate to how we are feeling.
What is it a marker of/for?
What does your doc say? I know who he is and he IS well respected..but if HE couldnt give you a "straight" answer about what the test actually means for you then WHO can?
That is my point. I think it is getting fuzzier and fuzzier like my brain.
posted
For me the test #'s have gone up and down in correlation with how I am feeling.
They've been as low as 12 and as high as 70.
I've had the test done frequently...up to monthly over a period of a year and a half.
I know that Doc S and another Cali LLMD believe that the reference range is too low. They both believe normal should start at 100 (not at 60).
I know that the other Cali LLMD wants to see patients with a value of 150 before he takes them off treatment..for fear of relapse if the value is lower.
Pomegranite
Posts: 309 | From CA | Registered: Nov 2002
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I want to again reiterate that we are not each others enemy and I'm sorry for coming off harsh.
In speaking with Dr. P., he had indicated that the latest thought on CD57 is that it is of some use in MANY (but not all) cases as a marker to assist the Dr. in monitoring resistant cases (like mine).
We had never checked it in a year and a half of treatment and he felt (since I'm feeling so poorly again)that it might help indicate whether there still is a high keet load.
He said that it is not always corrabative, but, it is in enough of the cases he's seen that he uses it as another tool in the arsenal.
My other thought is does anyone know if Dr. B. has changed his view on CD57, as it's right on page 8 I believe of his MANAGING LYME DISEASE, 15th edition, September, 2005 which is right on the ILADS site. I don't know how anyone could conclude anything but that CD57 is an active diagnostic component.
Hey, all this chat is at least taking my mind off how lousey I feel so you see CD57 is of some use after all
-------------------- Thx, Dave (Now in VA.) Posts: 207 | From Lynchburg, VA. | Registered: Jun 2004
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was actually able to go out in the sun and do some gardening---super positive!
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