posted
I just had my new LLMD read me my Labcorp blood test results for CD527 over the phone.
She said normal is 195. She said mine is 42.
She said that means my immune system is being suppressed by the Lyme.
Does this sound correct to you guys?
I had a different LLMD who was 3 hours away from me, who was of no help, really. So, I stopped seeing him & stopped my meds for the past month.
I used to take:
Ceftin for 8 months. Zithromax for 8 months. Flagyl for 7 months.
Plaquenil for 1 month (replaced the Flagyl that month). (I was worried about my eyes getting damaged by Plaquenil that's why I stopped that).
So anyway, after A TOTAL OF 9 MONTHS of treating w/ this powerful combo above, I'm still NO BETTER (I don't feel any better) and apparently this CD57 test proves how I feel.
I was also positive for the DNA of Borrelia in my blood in 2 independent PCR tests.
And, positive for Anaplasma.
I was negative for both Babesia & Bartonella.
SO ANYWAY >> Is a CD57 of 42 low like my doc said? I'm trying to figure this out & decide if I should try a 3rd LLMD. Minnesota REALLY DOES NOT HAVE MANY LLMD's WHO'VE BEEN DOING THIS LONG OR WHO REALLY KNOW WHAT THEY'RE DOING.
My main symptoms are pain in both hips (like Lyme arthritis) and zero restorative sleep. I am exhausted all the time. My brain swells if I drink alcohol & if I exercise.
ANY THOUGHTS ON MY CD57 RESULTS? Someone told me at a support group meeting once that everyones' CD57 are different & you need more than one test to determine your base line. So, does that mean you can't tell anything from my CD57 being only 42?
Thank you for any answers you can provide me, JenniferMN
posted
I have always heard if you see no improvement for 1-2 months that something in your protocol should be changed.
No reason to stay on the same drugs if nothing is happening.
Actually Dr J has also mentioned this to us about my son's treatment.
He also said he does not think the CD57 is a reliable marker for how things are even for adults when I asked about it.
He runs ALOT of tests each time we see him but never a CD57.
Although my son had one from a previous LLMD we had seen and it was low like yours.
Posts: 448 | From minnesota | Registered: Feb 2010
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Your CD57 is low. My doctor uses the test. Mine was under 20 and I feel terrible. Although some people feel really bad and their CD57 is not abnormally low.
My take on it is that if you do have a low number, you most likely have chronic Lyme and can probably use the test to help determine when you can go off treatment. If you don't have an abnormally low number, I don't think that excludes a Lyme diagnosis.
I had two tests. One before any strong treatment (just came off a month of doxy a few weeks earlier) and the next one after 2 months of mepron/clindamycin. The number only rose 2 points. I now feel 10X worse. I would hate to see what the number is now.
posted
Carol in PA... Thank you so much for the CD57 info link... It's a really good explanation!
LymeXtu... I'm going to private message you back regarding our Minnesota LLMD's & stuff... hold on... JenniferMN
Posts: 83 | From Minnesota | Registered: Jan 2011
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posted
Summer3... Wow, yours was only 20... OMG... I know how you feel. I totally agree w/ you that once you've been diagnosed w/ Lyme & after you've been trying treatment, the CD57 test is a good way to see if your treatment is working. I mean, besides the fact that I DON'T feel any better & I DON'T SLEEP any better, & my hips hurt more than they ever did before.
I'm sorry that you don't feel any better w/ your treatment either... maybe yours needs a bit more time than 2 months... I know for sure I have to try something different after 9 months not feeling any better. And, I need a better doctor.
I hope you begin to feel better soon Summer3 & if I find a miracle treatment regimin, I will be sure to let you all know!!!
JenniferMN
Posts: 83 | From Minnesota | Registered: Jan 2011
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Our doctor uses the CD57. He wants us to be at 150 and symptom free for 3 months. We have all climbed up from 30's. My oldest is now 119. I am hoping that his recheck next month will yield the magic number and be just a part of the conversation as to whether or not he is ready to discontinue treatment.
It is not the be all end all test but informs him of how our immune system is working. There was a dip at the start of treament like many people see.
My youngest is up to 92 and feeling so much better. He was the sickest in the family. We all have really been working to improve our immune systems. We have taken supplements to increase killer T cells, too.
I am at 96 and working full time. I dream of the day when we go, "What is a CD57 again?"
Good luck,
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
My CD57 started out at 32 and dropped to 26 after 9 months of treatment even though I started feeling better. It is not always a good indicator of progress. Everyone is different. Also, until I started the herbal protocol to treat my coinfections (Babesia, Toxoplasma, Bartonella, Mycoplasma) and until I moved out of house that had mold, I didn't see huge gains. After the move and the herbs I still take, I have been able to resume almost all pre-Lyme activities. BTW, I began treatment with oral antibiotics for 6 months, then had IV antibiotics for 3 months, then oral antibiotics for 9 months prior to starting the herbs. I am doing much, much better now. You will too...it just takes time to find the right treatment for you. Hang in there.
Posts: 31 | From Kalamazoo MI | Registered: Sep 2010
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Ceftin & Zithro doesn't work too well for Some... incl me. *I* did best on hi-lvl doxy & Flagl as well as hi-lvl "amoxy", Probenecid & "Fluc". Everyone is different.
Give your new LLMD a chance.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Also... a single CD-57 "count" result, or number, doesn't really tell a whole lot, though 42 is pretty low. Eeryone's healthy # is different. It is typically used to tell treatment effectiveness by how it CHANGES over the months.
IF for example it doesn't budge or goes lower after, say, 2 or 3 months on a new treatment protocol, it's an indicaton that the protocol isn't working as well as it should & needs changing... or at least major modification.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Has anyone's ever started low and gone up when you feel worse or the same? I'm a little worried about something falsely raising it.
Now I am on Zithro for 4 + months and Mepron and feel somewhat better. I am also on herb tinctures, supplements, etc.
Posts: 722 | From CA | Registered: Dec 2011
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
I agree, my CD57 did not start to make significant changes up until I treated with anti-parastics (aka: babesia meds).
Mine was 26 when I was diagnosed and was at 38 two years into aggressive treatment.
Once I started taking rounds of nearly every anti parasitic available (mepron, ivermectin, biltricide, malarone, chloroquine, primiaquine:not all together) did I start to see real changes.
Now, my CD57 is rising about 30-40 points every 3-4 months.
It is now at 109. BTW-I am 90% improved from when I started 5 years ago.
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
Thank you everyone for all your CD57-related answers. Lots of really good info! I'm going to try some other mix of ABX, haven't decided what yet, then after another while on those, get my CD57 tested again, to see if it has improved.
I'm also going to look into buying a Lyme book, or two, that might suggest different Lyme ABX combos other than what I've been on so far which has not worked. (cyst-busters, bio-film busters, etc)...
Thanks again guys!! Jennifer
Posts: 83 | From Minnesota | Registered: Jan 2011
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posted
My CD57 was 81. Not too bad if you ask me. Don't know what it means because I don't feel necessarily that great.
Posts: 128 | From California | Registered: Apr 2012
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