seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
OK, I've been treating for almost two years - 95%+ monotherapy. My CD-57 from LabCorp has been tested 4-5 times over this period. I started at 54. Other scores were 54, 30, 72, 48 and today 9 months since my last score a whopping 28.
Two years wasted treating IMO. This is not looking good at all if Dr. B is right. Maybe I'm in a lot worse shape than I think and need IV or something. I know some LLMDs feel it's not reliable, but if Dr. B thinks it's a strong Lyme indicator, that means something right? He's the Lyme kingpin.
My Cpn IgG titers continue to skyrocket (>1:256). ASO titers elevated, but not a huge amount over the high end of normal.
I'm getting chronic bronchitis and my ID doc can hear it. Something tells me I'm in trouble.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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bcb1200
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posted
Sorry to hear this. The question is...how do youi FEEL? Better / worse?
I believe Dr ! Says cd57 will stay low until lyme is under control. Then it will jump.
Have you tried LDN to boost your immune system?
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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bcb1200
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Oops. I meant Dr. B
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I have had some days where I feel a bit better and functional and then others horrible. Whatever I have, it's nowhere near gone. It's there waiting to pounce on any bad day.
I have not tried LDN. No LLMDs ever mentioned it. I'm hoping for some treatment changes soon. What I have done has not been enough and hasn't worked.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I am in pretty much the same position as you. I have been treating for almost 2 years and my CD57 was maybe 37 a few months ago.
I am shocked by my number because I am walking around fine. I do have a few, slight symptoms which get worse off abx so I think I need to keep on treating. I don't really view it as a measure of how sick I am, but how sick I could get.
In some ways, I think it would be worse if you CD57 was normal since you are still sick. Then you would have to find a different path to take.
I don't think you should be overly concerned about your number, but go by how you feel. Use that number as an indication that you should make some changes.
I have a new LLMD that is going closer to Dr. B's guidelines, if not exactly by them. I am on 3 abx at higher doses than before.
What treatment changes are you hoping to make?
Posts: 984 | From US | Registered: Dec 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
My treatment changes I hope will to be doing what you are Jkmom and not just baby stuff. Most of all, I want to get off Abx so badly in a reasonable time period.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Good luck. I was kind of scared at first that I would herx badly. So far, it's been working out all right.
Do you have an appointment yet?
Posts: 984 | From US | Registered: Dec 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
I've been there Seek. My CD57 stays around 40. I'm still highly symptomatic though so it does make sense.
Bb probably laughs at mono therapy. When I felt my best, I was taking Levaquin, Rifampin, Zithromax, and Omnicef at the same time.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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lymeinhell
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Member # 4622
posted
I was still a 19 (absolute) when I stopped abx 5 1/2 yrs ago. Never got higher than 22 during treatment. No relapses.
Gave up testing it after a year because mentally it really freaked me to get the results. My LLMD said it is really just a helpful indicator in the diagnosis, and you should go by how you FEEL. You could take this test every day for one week straight and get very different numbers.
I also took all of my CD57 tests to my Allergist/Immunologist - he told me that this test is just a TINY picture of a piece of what is going on with your immune system. And given my amazing recovery and lack of other symptoms, there was no reason to persue it further.
-------------------- 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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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Lymeinhell, that's great new you didn't relapse with a low number. I can't imagine finding an allergist/immunologist who can actually understand it. Did you test positive for TBIs to begin with or all clinical diagnoses?
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lymeinhell
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posted
CDC positive on IgeneX. Clinical dx of Bart.
He was even more impressed that my nightmare sinus issues/allergies disappeared after the month of Diflucan my LLMD prescribed. And booted me from his regular care 3 mos later. Guess I was lucky to find him - this guy has a 2 month waiting list for appts.
-------------------- 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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posted
Hey seek don't fret over this cd-57 crap. Results change on how the lab obtained and handled your blood specimen, processed etc.
Ok, so Dr M says no picc for you? Have you discussed and asked him why? In 2007 based on my low cd-57 he had a picc inserted in me. They were low like yours. My last one 69. I started at 13.
How were the results of free plasma Hg?
Dr M won't prescribe LDN, forget about it. He wasn't sure what it was when I brought it up to him several years ago.
How did your appointment go yesterday. Send me a PM,curious to know what he has you taking now.
KA
-------------------- 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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posted
My LLMD is not very confident in CD-57 as a marker for getting better from Lyme.
He also says you must always have the blood drawn at the same time of the day for comparison from test to test because the levels fluctuate throughout the day.
He says that some of his patients get better and the CD-57 stays low. Some don't get better and their CD-57 goes high.
Go figure.
Posts: 276 | From Maryland | Registered: Dec 2006
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posted
I had my CD-57 taken 4 times during my 30 months of treatment. 9 months total on IV and my CD-57 never got above a 45... My LLMD never sent me for this test. My co-lyme doctor is the one that tested me.
I don't think it means anything.
Posts: 343 | From North Carolina | Registered: Oct 2008
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CD57
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Neither of the docs I have seen use it. It's helpful in diagnosis but that's it.
Posts: 3528 | From US | Registered: Apr 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
If it's helpful in diagnosis, it must be meaningful. You can't have your cake and eat it two. lol. I can see what everyone means though and it seems suspicious as an indicator.
Knowing that Dr B was pretty intelligent, it seems pretty likely it does have merit.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Most of all, I want to get off Abx so badly in a reasonable time period.
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