LLMD said it's the lowest she's ever seen. I figured there's gotta be SOMEONE out there who can beat me.
Does this mean that I'm in deep doo-doo if I don't get some treatment started again soon?
[ 27. June 2008, 06:00 PM: Message edited by: AliG ]
Posted by Alv (Member # 15192) on :
Yes I have spoken with a person ( on another forum ) that she survived the cancer 4 times and got lyme .
Her CD57 was 0.
Posted by maureen2174 (Member # 11471) on :
Yep, mine was 24.
Posted by maureen2174 (Member # 11471) on :
alv- did that person get well from lyme?
Posted by catskillmamala (Member # 12536) on :
Mine was 18.
Posted by Larkspur (Member # 5131) on :
Mine was 16 when I first saw my LLMD 5 years ago, but she said she had seen "0's" before
Posted by Alv (Member # 15192) on :
That women works with alternative doctors only.
She has Lyme , babs and mucoplasma 3 strains.
Ys she is well and is fighting to protect the lyme community .She is not over yet but doing only alternatives as her doctors are helping her.
They are $$$$.
Posted by dch1112 (Member # 13148) on :
You win....Mine was 51 in Oct 07... will retest in 2 months....dch
Posted by Leigh9O (Member # 15986) on :
mine was actually 75 but puzzled my doc.. said it really shouldn't be that high and need to do a retest soon..
also, it was 3%.. and i guess anything under 10% is indicative of lyme?
its confusing to me
God bless, Leigh
Posted by ByronSBell 2007 (Member # 11496) on :
4
Posted by cordor (Member # 9449) on :
Mine is 26 also.
Posted by AliG (Member # 9734) on :
Sorry to all of those who've beaten me.
Have any of you low-ballers gotten yours to jump up yet?
For %, I had "1".
Posted by AliG (Member # 9734) on :
I wonder if co-infections can bring this down too, or if it's only Bb. Does anyone know?
Posted by AliG (Member # 9734) on :
Hey Cori!!!
Long time no see! I'm hoping you've been making some improvements. I'm still keeping you in my prayers. Posted by cordor (Member # 9449) on :
My % was "1" also AliG...but my tests was done almost 2 years ago. Don't know what it is now....but I can tell you I am much worse than I was 2 yrs ago- so number is probably much lower. Interesting stuff.
Posted by cordor (Member # 9449) on :
Hey to you too Ali!!!!!! Posted by AliG (Member # 9734) on :
I think, if I understand correctly , the low number means we have very little immune strength against Lyme, so we have a hard time fighting it. Posted by cantgiveupyet (Member # 8165) on :
mine was a 10
then 42
and now 24
so i beat ya :-)
Posted by Mommy*of*3 (Member # 11688) on :
My husbands was 20, and then up to 67. I'm sure it's higher now, but we have not retested yet. Too expensive.
My oldest daughter was 26 before we began treatment, then jumped to over 100 the last time we checked.
Mine is now down to 20. But hopefully getting better.
Posted by pamoisondelune (Member # 11846) on :
Mine was 26, twice.
Posted by Amanda (Member # 14107) on :
Mine was 0 Jumped up to 11 six weeks later after starting Babs treatment. But In past 5 months, test has been done three times and is hoovering around 20
My LLMD says that this number is not always reliable indicator for everyone. She said that she has had some people who are bedridden with Lyme and had CD 57 counts above 150.
For some, it seems to be a reliable indicator, but not for all.
The other thing she has personally seen is that for her patients with cd 57 counts below 20, they have all had Babesea in addition to Lyme. But she herself says that isn't a scientific survey, just what she has seen.
Posted by teresambear (Member # 15061) on :
Mine was 48 and my DR. said that was good. He sees many in single digits.
Posted by AliG (Member # 9734) on :
Interesting.
Can't- Were you treating the coinfections all along?
From what I understand, the low-number fluctuation doesn't really have much significance. I believe it makes a BIG jump (high 100s?) when treatment has been successful.
Posted by AliG (Member # 9734) on :
a Department of Medicine, California Pacific Medical Center, 450 Sutter Street, Suite 1504, San Francisco, CA 94108, USA
b Immunodiagnostic Laboratories, San Leandro, CA, USA
Abstract
Background: Chronic Lyme disease (LD) 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.
Of these, 53 patients had predominant musculoskeletal symptoms, while 20 patients had predominant neurologic symptoms.
The estimated duration of infection ranged from 3 months to 15 years, and all patients had positive serologic tests for B. burgdorferi.
Ten patients with acute LD (infection less than 1 month) and 22 patients with acquired immunodeficiency syndrome (AIDS) served as disease controls.
Results: All 31 chronic LD patients who were tested prior to antibiotic treatment had significantly decreased CD57 lymphocyte counts (mean, 30�16 cells per μl; normal, 60-360 cells per μl, P less than 0.001).
Nineteen of 37 patients (51%) who were tested after initiating antibiotic therapy had decreased CD57 levels (mean, 66�39 cells per μl), and all five patients tested after completing antibiotic treatment had normal CD57 counts (mean, 173�98 cells per μl).
In contrast, all 10 patients with acute LD and 82% of AIDS patients had normal CD57 levels, and the difference between these groups and the pre-treatment patients with chronic LD was significant (P less than 0.001).
Patients with chronic LD and predominant neurologic symptoms had significantly lower mean CD57 levels than patients with predominant musculoskeletal symptoms (30�21 vs. 58�37 cells per μl, P=0.002).
CD57 levels increased in chronic LD patients whose symptoms improved, while patients with refractory disease had persistently low CD57 counts.
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.
[ 28. June 2008, 11:55 AM: Message edited by: AliG ]
Posted by 1Bitten2XShy (Member # 12280) on :
Mine was 360..yes you read that right.
My % was 8
That was 1.5 yrs ago, and have never re-tested.
Thoughts are high like that may be infected with co's more than Lyme, per my LLMD
Posted by disturbedme (Member # 12346) on :
My very first one was 18, second one was 20. Now it's 9.
Posted by AliG (Member # 9734) on :
I seem to recall having read recently that the CD-57 cells are also important for fighting cancer. Posted by cordor (Member # 9449) on :
HMMMM....my cd-57 was 26. Now 2 years later I have 2 cancer markers coming up in my blood.
Posted by cantgiveupyet (Member # 8165) on :
Ali- when mine went up to a 42 only thing i was on NO abx and only change was that i went on armour.
I was on malrone for a few months, biaxin for a few days, doxy two weeks and abx for UTI's between the time it was 42 and is now 24.
I had a relapse of something when the last CD57 was drawn...weight loss increased, starved all the time. Also tested positive on IGenex for lyme and babs with the same blood draw.
Posted by adamm (Member # 11910) on :
Mine was 20--could it ever get back over 200, like it's supposed to
be? Is the fact that it was this low the reason that nothing has
helped my sx?
Posted by Allie (Member # 10778) on :
Here's some good news.
Mine was 20 about 3 yrs ago. then was 30 about 2 years ago. It was 105 about a year ago!
I'm about 80-90% better, but having a hard time mopping up the residue!!!
Posted by AliG (Member # 9734) on :
quote:Originally posted by cantgiveupyet: ...weight loss increased, starved all the time. Also tested positive on IGenex for lyme and babs with the same blood draw.
In my non-professional opinion, that sounds like a missed co-infection or something.
Unless I'm mistaken Babs causes "anorexia" which means NO appetite.
Just curious.....
Has anyone here taken any of the mushrooms, like Cordyceps, Maitake D-Fraction?
Colostrum (high IgG)?
Any "immune-building" supplements?
Any herbs?
Artemisinin?
Posted by Angelica (Member # 15601) on :
Does anyone know if the doctor who even invented this test is still using it in his office?
A poster at another site who goes to the NP in that office said she thought they had moved on to different testing methods.
Posted by lymebytes (Member # 11830) on :
Angelica, Yes I have seen him recently (May) I have seen him once in awhile for a 2nd opinion over the last 2 years and he BASES all treatment on this test and the Igenex results must be positive for treatment too. I have wondered if I have Babesia, but because the test is negative, he will not treat for it.
He tests you every 60-90 days without fail for your CD57 and for co-infections that remain positive. For instance, if your Bart test turns negative, he declares you Bart free and will not test for it again or treat it (he uses Igenex ONLY, never Fry).
This test is his main focus, no matter how you feel. He won't listen to symptoms - only looks at lab results. Period.
We have discussed this test and he use to say it was "lyme specific" but now has changed his tune and says it can be low because co-infections or Lyme or even viruses are unresolved. I don't really trust his judgement at all and have seen him for the last time.
This test - I don't trust. Many LLMD's don't do them, including my (other) favorite LLMD.
I linger around 50-60 I hit 150 once and NEVER FELT WORSE! Then it crashed to 58 and I felt much better.
It will go up and down all throughout treatment. You can bee 100 now and next month 10.
Leigh - 75 is low, even though it is in the normal range. My son and husband had CD57 around 160 - both have LD/co-infections. These diseases should be based on symptoms - not this test.
Alig
quote:Patients with chronic LD and predominant neurologic symptoms had significantly lower mean CD57 levels than patients with predominant musculoskeletal symptoms (30�21 vs. 58�37 cells per μl, P=0.002).
I have primarly neuro symptoms and still linger at low normal, which isn't extremely low like some. Shows the unreliability of this test. Yes co-infections have signifcance related to this test.
[ 28. June 2008, 08:48 PM: Message edited by: lymebytes ]
Posted by cantgiveupyet (Member # 8165) on :
AliG- I agree seems like something is missed. Im going on babs treatment now, but wonder if its bart possibly.
sometimes i do feel like i have NO appetite, and it goes between that and being starved.
I think the key for all of us is to get the immune system to work properly. First by killing the infections, then by supporting immune so when infection load is down we can fight.
Posted by Leigh9O (Member # 15986) on :
~Lymebytes
Thats what my second LLMD said..it is low and b/c the % was only 3 on CD=57 and IGenex test showed pos, it was Lyme.
I am yet to be tested for co-infections but will be next month. My symptoms are neuro and lots of pain--joint and neuropathy. I feel sick all over and run fevers too.
Right now my eyes are really blurry.. more so than usual. I am on clindamycin and wonder if it is part of herxing? I have more pain too. ugh
Posted by Leigh9O (Member # 15986) on :
cangiveupyet
I have the same thing.. First I feel like I just can't eat anything. The thought of food makes me nauseous. Then later in the day i can't get enough.. What gives? Its awful huh? I feel for ya.
Take Care and God Bless, Leigh
PS I try to respond to two diff ppl in the same post but forget what I want to say by the time I get to addressing the second person. Darn short term memory and brain fog! grrrr
Posted by Angelica (Member # 15601) on :
Lymebytes I so agree with you.
I had some intense neuro symptoms and less joint and physical pain then some lymies. I scored high on my first CD 57 and he told me my immune system was very good in regards to LD and he seemed overly impressed with my test results. I do not know if I agree with his interpretation of my test.
I got tired of paying out of pocket for all his testing too. I felt it was over kill. I think clinical diagnosis is really important and especially for co-infections which do not always show in testing.
I think bart and babesia should often be suspected and looked into even if the testing is negative for both of them.
Posted by Allie (Member # 10778) on :
Reading this thread I think we might be on to something here, in that babs keeps popping up as a possible confounder with CD57.
As I posted above, my CD57 was at 20 then 30 then 105. The 105 was after at the end of 6 months of Mepro/Zith for babs. I really improved with the Mepron/zith to 60%, from like 10% during that time.
Then I tried mino, fluconazole, tindimax, rifampin and I plateaud. Then I went on 3 months IV rocephin with tindimax. I felt like 90% after this. Over the last 8 months I have only taken one 1.2 MU bicillin shot a week and slowly relapsed.
A CD57 from 4 weeks ago (just called MD) was 44, so it went down more than half.
I started Mepron/Zith with the bicillin about 4 weeks ago and am having babs herxes (sweating, heart flutter, anxiety...). So, I think the babs was not killed (or it couldn't help because I still had so much lyme).
This is a very interesting thread.
Thanks so much everyone!
Allie
Posted by UnexpectedIlls (Member # 15144) on :
my CD-57 is 43 and 2 % whatever that means???
Posted by lymeinhell (Member # 4622) on :
1/19 absolute
Never been higher than 1/22
Gave up testing 1 year after going off abx (and feeling fabulous). As my last test was 1yr off treatment and I was feeling great, it was emotionally crippling to get numbers in the same range.
Still feeling fabulous a few yrs later so if there's sense to this testing other than to help confirm a lyme diagnosis, not sure what it is.
I asked my immunologist for his opinion of my tests (I had had at least 4 or 5 done), he said
"If it ain't broke, don't fix it. This is such a small snapshot of the whole picture, it's not really telling a true story. With the lack of symptomology and good health you've recovered to, there's no point pursuing this angle, other than to upset yourself".
So that's what I've done..
And I do take an immune builder twice daily - AG Immune from www.bodywise.com. Contains Astralagus, Whey Protein and Maitake Mushroom. Have been taking it at double strength from the very first day of treatment.
Posted by Dancer (Member # 11039) on :
Latest is 22. *sigh*
Was 55 when I first got diagnosed.
Posted by NJ (Member # 14860) on :
My CD 57 is 11, down from 15. MY Western blot however, is 'suspicious', but not positive. So the CD 57 is the only test i can really go on...
Posted by AliG (Member # 9734) on :
I had a CD-57 done through Quest, back in January.
It didn't give an "absolute" value, only percent and the reference range was "in gate". (???)
The percent was 5.
I wonder if I can compare a 5 from Quest in January to a 1 from Labcorp in June. Would that indicate that the critters have once again taken down my immune system?
I had been feeling a Babs flare when this last one was drawn.
Posted by AliG (Member # 9734) on :
I was just doing some reading. According to Buhner, Andrographis and Cat's Claw are supposed to increase the CD-57 count.
Has anyone here tried these herbs?
I had only taken the starting dose of them, for about a week, a few weeks before I had this latest test drawn.
I had stopped because of "the runs", but I really don't know whether they were to blame.
I had also started taking garlic, resveratrol(knotweed), enzymes, RM-10(mushrooms), colostrum, milk thistle, liquid multi-vites, probiotics, IL-6 +Inositol (and who knows what else ) in a fit of desperation.
Maybe I should go back & just try adding them first. I think it said that they could cause "sluggish bowel", quite the opposite of what I experienced. I'm guessing that one of the other things (or combination of) must have caused the problem.
I am curious to know if anyone else who's been monitoring CD-57 or had a low number may have had any experience with these herbs.
Posted by disturbedme (Member # 12346) on :
quote:Originally posted by AliG: I was just doing some reading. According to Buhner, Andrographis and Cat's Claw are supposed to increase the CD-57 count.
Has anyone here tried these herbs?
Yep, I take Andrographis (and love it. It's helped me a lot and gave me a 2-week herx when I first started it). It hasn't helped raise my CD-57 though. Neither has Cat's Claw. It actually lowered during the time I was treating and taking these herbs. It went from 20 to 9.
Posted by AliG (Member # 9734) on :
Hmmmm......
Posted by AliG (Member # 9734) on :
I'm curious about something else.
I had a high positive for IgG Epstein Barr Virus. The high range was .90, mine was 3.33.
I'm wondering if anyone else here, with low CD-57, was tested for EBV(HHV4) and if so, pos/neg?
Posted by jjeennnniiee (Member # 7964) on :
When I was first diagnosed, I was a mere 2. *big sigh*
After one year or so of treatment, I was a whopping 5. *sigh*
I just got retested, after two years or so of treatment, but I haven't received my test results yet.
I don't expect it to be up much, if any, as I still have a long way to go with my treatment.
I hope and pray it's, at least, gone up though, not down, even if just a few points, as I'll take any improvement I can possibly get!
Love, Light, & Health, Jennie
Posted by Marnie (Member # 773) on :
"Double-staining with anti-CD3 and anti-CD57 mAb demonstrated that
CD57+ cells were all CD3-."
The status of CD3 cells impacts CD57 cells.
CD3delta cells are impacted due to Bb's PKCd (delta) inhibitor.
Besides impacting CD3 cells...the signal sent to CD4 cells gets messed up too.
Posted by jjeennnniiee (Member # 7964) on :
Hi Marnie,
I follow you.
I read one of your posts about P11.
If my understanding it correct, it helps our cells, thus wards off lyme.
Does that mean P11 also helps to raise CD57?
Is there a way for us to have more P11?
I'm thinking if we could have more Pll, then we could increase our CD57.
I'm intrigued by many of your posts, to say the least.
I don't confess to know, much less be able to explain, what you do though, but I am trying to understand, as much as I possibly can.
Love, Light, & Health, Jennie
Posted by AliG (Member # 9734) on :
I've been doing some reading & found that Malaria can reactivate latent EBV & EBV has been found in autopsied MS brains.
EBV + Malaria cause Burkitt's Lymphoma?
CD-57=cancer fighting T-cells.
I'm wondering if Babesia can re-activate EBV as well.
I'm wondering if the combo of Bb, EBV & Babesia can cause the persistently low CD-57 and perhaps the reason CD-57 is low in chronic Lyme cases is because Babs has had a chance to get EBV all riled up.
Posted by AliG (Member # 9734) on :
Pubmed search = EBV IgG (I don't know why I searched for that, but these are some things I turned up )
Although malaria and Epstein-Barr (EBV) infection are recognized cofactors in the genesis of endemic Burkitt lymphoma (BL), their relative contribution is not understood. BL, the most common paediatric cancer in equatorial Africa, is a high-grade B cell lymphoma characterized by c-myc translocation.
EBV is a ubiquitous B lymphotropic virus that persists in a latent state after primary infection, and in Africa, most children have sero-converted by 3 y of age.
Malaria infection profoundly affects the B cell compartment, inducing polyclonal activation and hyper-gammaglobulinemia.
We recently identified the cystein-rich inter-domain region 1α (CIDR1α) of the Plasmodium falciparum membrane protein 1 as a polyclonal B cell activator that preferentially activates the memory compartment, where EBV is known to persist.
Here, we have addressed the mechanisms of interaction between CIDR1α and EBV in the context of B cells.
We show that CIDR1α binds to the EBV-positive B cell line Akata and increases the number of cells switching to the viral lytic cycle as measured by green fluorescent protein (GFP) expression driven by a lytic promoter.
The virus production in CIDR1α-exposed cultures was directly proportional to the number of GFP-positive Akata cells (lytic EBV) and to the increased expression of the EBV lytic promoter BZLF1.
Furthermore, CIDR1α stimulated the production of EBV in peripheral blood mononuclear cells derived from healthy donors and children with BL.
Our results suggest that P. falciparum antigens such as CIDR1α can directly induce EBV reactivation during malaria infection that may increase the risk of BL development for children living in malaria-endemic areas.
To our knowledge, this is the first report to show that a microbial protein can drive a latently infected B cell into EBV replication.
Author Summary
Malaria and Epstein-Barr virus (EBV) infections are recognized cofactors in the genesis of endemic Burkitt lymphoma, the most common paediatric cancer in equatorial Africa.
EBV is a ubiquitous virus residing in B lymphocytes that establishes a lifelong persistence in the host after primary infection.
EBV has two lifestyles: latent infection (non-productive), and lytic replication (productive).
Children living in malaria-endemic areas exhibit an elevated viral load, and acute malaria infection increases the levels of circulating EBV.
The mechanisms leading to viral reactivation during Plasmodium falciparum malaria infection are not well understood.
Cystein-rich inter-domain region 1α (CIDR1α) is a domain of a large protein expressed at the surface of P. falciparum-infected red blood cells.
Based on previous findings showing that CIDR1α activates and expands the B cells compartment where EBV persists, we assessed the impact of CIDR1α on viral reactivation.
Here, we identify CIDR1α as the first microbial protein able to drive a latently EBV-infected B cell (no virus production) into lytic replication (virus production).
Our results suggest that P. falciparum-derived proteins can lead to a direct reactivation of EBV during acute malaria infection, increasing the risk of Burkitt lymphoma development for children living in malaria-endemic areas.
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, the low number means we have very little immune strength against Lyme, so we have a hard time fighting it. ![[Frown]](frown.gif)
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