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What else causes low CD57?
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What else causes low CD57?

it seems like there are a lot of people with questions related to CD57.  It would be nice to have a doctor give an overview of the marker, eh?

anyway, i got my CD57 back today and I clocked in at 40 but I'm still waiting on western blot.  My dr said that it wasn't that low but it was lower than average.  The scientific literature says 60-360 is the normal range.  My white blood cell count is normal, EMG and NCS are normal, brain and C-spine MRI normal, and neurological exams are normal, but I'm still dealing with strange, diffuse pain and muscle twitching with the recent development of eye and throat pressure.

Besides lyme disease, what else does a low CD57 point to?  I know it can be low for HIV but that's out of the quesiton for me as I've been married for 10, and I had an HIV test before I was married and I haven't have blood transfusion.  SO...what else does a supressed CD57 indicate?  High CD57 is indicative of cancer, but low????

your input is appreciated.

Thanks,
Todd
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What an awesome discussion. According to my physician, the only people who would have a low CD57 would be those who were affected by lyme disease or HIV. I know that there are many controversial theories out there, but I read somewhere that lyme mimics(MS, RA, Lupus) patients did not test low on the CD57 test. Most people say that there is limited information on the test, but when I research CD57, it tends to go hand in hand with lyme disease or what I would think to be a co-infection of lyme disease. This is a interesting topic and I hope others chime in on this discussion.
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I don't know if you've read Stricker and Winger (2001) but here's a link to the abstract:

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T75-42C64Y9-7&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=cb3ab1a521146a4ecbd97e5835c11208

I believe Stricker is the person who discovered the use of CD57 for detecting Lyme.  I read the paper and there's no mention of other conditions that trigger a low CD57 except HIV.  If you want a copy of the paper, send me your email via a personal message through the forum and I shoot it to you.

Best,
Todd
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This is a great question and has been my question recently as I just was told my CD57 is 38 which my doctor says is indicative of Chronic Lyme.  I have been getting IVs with large amounts of Vit. C and he has started me on a 6 week trial of doxycycline.  He will retest my CD57 after the 6 week trial and see if it has improved.  He said the CD57 should be at least 60.  I was diagnosed with Fibromyalgia one year ago and progressively got worse until I was in the hospital.  Knowing Fibro wouldn't make me so ill, I searched for other answers.  Glad I did because from what I understand, people with Fibro don't have a low CD57. I also have EBV and wondered if viruses could lower the CD57.

I hope others get involved in this discussion...
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Todd,

I found the paper very interesting. I was somewhat surprised that the paper mentioned people with MS, lupus, and RA. I really wanted to know what the results were for people who have MS, but according to the paper, the results were inconclusive. I just want to know what I have and I want to be able to stop thinking about the possibility of this being anything else but LD. I am anxious to get my Igenix results back. My doctor wants to be sure this is what we are dealing with, which goes back to the same question; if its not lyme, what is it and why would my CD57 be low if it was not lyme disease????
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Were any other doctors you met besides LLMD familiar with CD57?

I have to see if I can dig out paper, I think Dermatology journal showed correlation to Psorisis and thought it was linked to auto-immune conditions. I can't remember exactly, I will look.
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my neuro is supposed to call me today to give me the results from other blood work i had earlier this week.  when i speak to him i'll hit him up with questions regarding low CD57.  I didn't use him for testing me for lyme, as he told me it didn't occur in the state where i live (which isn't true).

i'll post an update on this thread after I speak with him (fingers crossed he actually calls me today.  i know the lab work is done b/c his assistant said it was.).

oh...and the sample size for that second paper i sent you was 25 people, which is smaller than the first.  i'm an ecologist and I'd never make any conclusions across an entire population with such a small sample sizes, but maybe that's the norm for medicine.

rgds
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My LLMD mentioned the CD57, but my neuro brought it up when I told him I was getting the Igenix test done. He admitted that this was not a test that he knew a lot about, but that the LLMD could tell me more about it. This is the only information I received from any doctor other than the LLMD.
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Your neuro sounds a lot like the first 6 doctors that I saw here! All of them kept saying the same thing, there is no lyme disease in Georgia. What a headache! Please keep us informed on your other results.
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Just stumbled on this info posted on another forum by an RN while searching the web.  like with everything else on the internet, don't assume it's all grounded in good science.

**Excerpt**
A below-normal count has been associated with chronic Lyme disease by the work of Drs. Raphael Stricker and Edward Winger. No one knows for sure why CD57+ NK cells are low in Lyme disease patients, but it is important to note that many disease states that are often confused with chronic Lyme (MS, systemic lupus, rheumatoid arthritis) are not associated with low CD57+ NK counts. The good news is that for most Lyme patients the CD57+ NK level increases as treatment progresses and health is regained.

CD57 markers can also be expressed on other kinds of cells, including T-cells, so it is important to distinguish between CD57+ T-cells and CD57+ NK cells. Clinicians need to be aware that many testing laboratories claiming to perform the CD57 test are actually looking at CD57+ T-cells rather than CD57+ NK cells, which are the cells of interest in chronic Lyme disease.
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My understanding of the CD 57 is that it is low in chronic lyme and AIDS.  I would also bet it would be low in anyone who is immunosuppressed such as people with transplants and people undergoing chemo.
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I certainly hope LD is the reason my CD 57 is so low. I have already had 2 HIV tests and I know that I am negative. Its hard just sitting here waiting on results. I even called Igenix on yesterday to make sure that they had my results and I was told that they did and that the results would be ready next Thursday. I am just tired of all of this and really feeling down and depressed about all of it today. I want my life back, but I really want to know what is going on with me most of all.
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my neuro didn't anything about CD57 or lyme disease, and suggested in get back in touch with my PCP and a infectious disease doctor.

frustrating......
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Searching on another web site  I found: One person mentioned that they felt better after antibiotics, but found no increase in CD57. Another person said that the LLMD didn't place much weight on this test.  I guess not all LLMDs put a lot of faith in this measurement, as mine did.   Note that LabCorp has a qualifier that says this test is only for informational purposes, or something like that.
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I have an e-mail to Professor Garth Nicolson who studies mycoplasma infections to ask him what all can lower the CD57. He may have some insight.
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please let us know what Dr. Nicolson says when you hear back from him.  thanks for contacting him.
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I haven't heard back from Dr. Nicolson yet.  I also just put an e-mail in to Dr. Jacob Teitelbaum, Medical Director of Fibromyalgia and Fatigue Centers.  He studies how chronic infections like Lyme, EBV, Mycoplasma, HHV-6, etc cause Fibro and Chronic Fatigue.  I am hopeful he will answer the question about the CD57, but I read that he cannot answer all his e-mails even though he tries.  It's worth a shot though. I hope I hear from at least one of them and will share all info if I hear back.
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Dr. Nicolson e-mailed me.  I explained the low CD57 and he said it could be mycoplasma infections, but he didn't comment on the Lyme. He said about 70% of people with Fibromyalgia symptoms have mycoplasma infections.  We all know that Fibromyalgia can be a stage of Lyme, but he did not discuss Lyme at all in regards to the CD57.  The Fibro Center I visited did a blood test for mycoplasma infections, but I remember reading somewhere that these tests may not be the most reliable either. It seems like the same situation as Lyme.

I also asked him about the product from Chisolm Biological Labs for Lyme called Immunfactors and he said this has proven useful, but not everyone responds.  He did mention there is also a formula for mycoplasma infections which is once again useful, but not everyone responds.

So, do we have Lyme or Mycoplasma infections or both...we can only guess if we don't have reliable tests for either one.
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I heard the same thing about Mycoplasma testing.  Another ambiguous test result.........
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So is it fair to say that the CD57 marker is a general metric for looking at various immune conditions and that we should not put too much confidence in it?  it's hard for me to believe that some doctors treating people for Lyme based simply on the CD57 results, especially since there are so many mixed opinions on it efficacy.
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It appears if your CD57 improves after a course of antibiotics, that you have some kind of chronic bacterial infection, but it may not be safe to assume it's Lyme as Mycoplasma Infections are also treated with antibiotics.  

My doctor said that he had a patient who had all the symptoms of Lyme and a low CD57, but a negative Lyme test and her symptoms and CD57 improved after 6 weeks of doxycycline.  This is what he was trying to do with me, but I started having an adverse reaction to the doxy and had to stop, but this is another story for which I will post a separate question. My current doctor is an alternative M.D., not a LLMD.

I did send another e-mail to Prof. Nicolson asking about how we go about testing for mycoplasmas and which tests are more reliable. I know there are several species of mycoplasmas which makes testing that much more difficult.
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Dr. Nicolson responded regarding testing for mycoplasma infections and other chronic infections including Lyme which suppress the immune system. He recommends PCR testing for mycoplasma species, chlamydia pneumoniae, HHV-6 and Cytomegalovirus at the following lab: RED Laboratories USA (http://www.redlabsusa.com).  He recommends testing for Lyme Disease with IGeneX Laboratories (http://www.igenex.com)

You will need a physician to order the test kits.
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I'm a little late to this post, but I was wondering if you found out from igenex if it was lyme or not?

hope you feel better =)
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Hi, snow.  I haven't seen the people in the thread above post here for quite a while.  You might try sending a private message if you're so inclined.

Welcome to MH/Lyme.
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I had the cd57 test done here in australia and mine come back at 39.
My G.P. who deals with lyme patients said I have chronic lyme, and I have just had bloods done and they are on way to america to igenex.
Does anyone know if igenex give false positives.
Do people with ms have low cd57 also?
Thanks
Melissa
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From what I have read online, CD57 is low only in those with Lyme.  Therefore, not in MS.  That's what makes CD57 useful in diagnosing Lyme

The CD57 test has a range of what is considered 'normal', and Lyme patients usually are low, but the test results can vary over time.  Like any test, it is an indicator, not a guarantee and has to be read in conjunction with symptoms.  However, the CD57 test is *not* said to have the high incidence of false readings that the Western blot and ELISA tests do.  

If you google or search "cd57" you will find a lot of information about the test.
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Thanks for that
I will have a look
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Jackie, I never took this CD57 test, do you think it would be any good to me?
Thanks
Chatter
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For future reference,  to date the only study I could find regarding the cause of a low CD57 count is by Raphael Stricker, MD.  Yes HIV can affect the CD57 count, but what may be misinterpreted by some is that the CD57 count goes up when you have HIV.  So a low CD57 count is particular to Lyme.  When the HIV T cells come under attack, the CD57 natural killer cells rise to take over the job of the missing T cells.  That's a distinction that needs to be made here.  With HIV you would expect to see a higher than normal CD57 count, not a lower than normal count.  
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I should correct my above post....HIV 1 which is atypical does cause a low CD57, but again that particular strain is considered atypical so the percentage of those with that atypical form may be small.  I'm not sure how much HIV should really be considered in regards to the CD57 count if you have already tested negative for HIV anyway.  The only other one is chronic Lyme.  Mine was 34 when I was tested and I was sick.  It has risen to 100 since my last test and after about a year of treatment and I have not retested it in a while.  The doctors will use it if the patient lacks a lot of other symptoms or labs that point to Lyme, but they don't generally resort to it unless they feel they need to for diagnosis.  My doctor, however, did order it.  I also tested CDC positive three times through LabCorp and once through Igenex for acute Lyme disease.  In my opinion, the CD57 count is a good indicator of how long you may have had Lyme.  They have said it takes approximately 10 years for that count to go down far enough to cause any concern.
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Weesy, thank you for the interesting posts.  Sounds like you've located a good doc.

Chatterbox, sorry I overlooked your message from a couple of weeks ago.  My doc uses the CD57 test, so it wasn't an issue for me to decide whether to take it or not -- I think the bigger issue will be whether your doc thinks it is useful or not.  

For the reasons Weesy lays out, it's my understanding that the test IS useful, but nonLLMDs may not agree.
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Could HHV6 be the culprit?  HIV is thought to be the sidekick to HHV6 in the AIDS debate.. read "The Virus Within".  HHV6 is a major immune suppressant, especially when tag-teamed with EpsteinBarr and Cytomeg.  I think that these viruses, especially when coupled together with HHV6 have an unusual correlation to weakening the immune system and taking control, which can cause these low CD-57NK cells.  Research and Thoughts?
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you mention a CDC Lyme test in your June  8 2011 comment. What is that.  My daughter has tested at 18 on the CD57 test and has many things going on for symptoms, that look like Lyme.  We are working with a Naturopath who has treated other Lyme patients successfully. But I'm not sure if Lyme and not Mycoplasmas or some such is the real diagnosis.
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My wife had a CD57 count of 43, 4 months ago. She has received massive treatments of antibiotics and vitamins, and her count just went down to 41. Her Dr is a Lyme specialist. can you tell me, about how long has my wife had Lyme. Does this 41 number mean she is chronic?
Thank you
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It's not possible to know from any test I am familiar with how long someone has been infected with Lyme.  A chronic Lyme infection just means one that is not new and has been in place for a while, and since many of us don't know when we were infected, it's all just a guess anyway.  

Chronic Lyme is curable, but it takes time.  I was on antibiotics for over a year, as I recall.  There is a reason the treatment takes a long time -- the Lyme bacteria divide (reproduce) very slowly, and it is when dividing that they are most likely to be killed by antibiotics.  

The docs redo the tests to track where things are going, to guide them in treatment and so they know when to stop antibiotics.  It's a good question to ask the doc, how long he thinks treatment may take ... but to my understanding, 4 months isn't enough to expect a cure.

Best wishes --

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I was told that there is no way of knowing how long someone has had Lyme, but a low CD57 typically means you have had it for a while and it is chronic. Usually a CD57 improves once the bacteria takes a back seat. Also I was told that the co-infection of Bartonella can cause a low CD57 and this requires a different antibiotic than Lyme, so your wife should make sure this is ruled out also.
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my CD57 was 147 back in 2008, when i was extremely sick with lyme. my dr. said this was low, but i think it's quite high for someone with lyme. of course i had just been on antibiotics (iv and oral) for appendicitis. maybe that's why my CD57 was so high? haven't had it tested since, as my lyme dr. retired and my family doc refuses to acknowledge my lyme diagnosis.
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Time to find a new doc, maybe?
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My husband has a CD57 of 13!!!! I have yet to see anyone else on here with results that low so needless to say I'm very concerned. He has been dealing with chronic symptoms for five years now and just recently we found a cardiologist (who now works as a homeopathic doctor) who believes he has chronic Lyme this was the first diagnosis we were given that made sense needless to say Dr. Delaney has been treating my husband with antibiotics and other natural homeopathic remedies , It has made my husband feel slightly better but not even close to feeling normal again.

So with that being said we started doing research on chronic Lyme and feel that he needs to be treated with IV antibiotics in order to kill this unbearable disease! so we found a doctor out in Arizona who feels he can help us with his treatment plan Dr. Korn from Envita Medical Center we had a consultation this past October and are set to start treatment this coming January.

Any input on this would be great
Thanks
The wife
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Sorry to hear your husband is having such a rough time.

There is some controversy over the natural killer cell measure, but my uneducated understanding of it is that the test might be useful for tracking a patient's response to treatment.  There is a lot of stuff in the medical literature attacking and defending the use of the marker.  If you have an LLMD who uses it, as mine did, it's not going to hurt, I don't think.  I wouldn't worry deeply about it not improving dramatically, tho, because maybe there are other reasons for it.  It's a still-developing area of medicine.

It takes a long time to feel fully healthy again, from what I've read, for anyone who has been ill with Lyme etc. for an extended period of time.  There is no quick cure, esp. if there are co-infections involved.

I have read that IV antibiotics are useful in some patients, but are not needed for everyone.  Your husband may be one who benefits from them.

I see you live in the Northeast.  If you are planning to travel to Arizona for treatment, you might be able to find comparable treatment without the long trip.  

I don't know anything about Envita or its staff but what I just read in five minutes on the internet.  They may be fine, but I would take the precaution of consulting a Lyme specialist nearer where you live for a discussion about Envita's approach and recommendations.  

There is a Lyme research center at Columbia University in NYC that may be of some assistance; I don't know.  But there are also Lyme specialists throughout New England you could consult for a second opinion.  That's what I would do.

Best wishes -- and let us know if you need help finding an LLMD near you.
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PS I just searched online for --

llmd massachusetts

-- and got some interesting links for referrals to Lyme specialists in your area.
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Thanks for your thoughts,

The biggest problem we have is that my husband does not test positive on the western blot although he has some positive strands and some that are "equivocal"  most doctors around here say you have to test positive for the western blot before even meeting with you.  So based on his symptoms these other two doctors have clinically diagnosed him with chronic Lyme. He has had every test done under the sun and has met with tons of doctors other than his symptoms and this CD57 everything else has come back perfect. Although he does have some co-infections like EBV this doctor also said this treatment if nothing else will kill all co-infections.

I really feel he will benefit from IV antibiotics due to the fact that when he takes oral penicillin his symptoms are some what manageable once he stops taking them he;s right back where he started. I don't know, I feel like this CD57 is all we have to go by. When Envita had ordered the blood work up through Igenex and another lab I cant think of right now, when we got the blood work back a few months ago, I felt like screaming at the top of my lungs "yes yes something has come back positive" (CD57) . Now I'm left with not really knowing if indeed this CD57 is something we can rely on.  I only wish we had a CD57 done a few years ago so we could have had some sort of baseline to go bye.

I will definitely look more into an east coast LLMD. I don't know sometimes I feel like I'm grasping at straws, this has all just been a nightmare....

thanks for listening....
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Yes, it is a rather frustrating and exhausting journey.  It is valuable information, however.  You're not alone, albeit it may feel that way sometimes.  There are many of us in the same ballpark.  How fortunate that you're husband has you.  I'm most grateful that I have a husband who cares and is so supportive in the unknowns.  It's tough, though it's part of my journey, and his too. 12 yrs. now of ?s, tests, seeking solutions, & acceptance.  Keep the momentum going. There is more power in movement!  Continue to Connect yourself with support systems, positive energy, exercise, and productive self-care.  Trust me on that.  It will help you avoid unnecessary pitfalls.

Blessings to you; 'the wife' & to your family,
Sunshine
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This is from The "Better Health Guy"'s 2010 ILADS Conference Takeaways:

Excerpt:

•Dr. Ray Stricker shared the following on the topic of testing:
◦Band 39 is the most specific for Borrelia
◦IgM Western Blot has more possibility of a false positive result than the IgG Western Blot
◦CD57 may be affected by Borrelia, Chlamydia pneumoniae, and Tuberculosis
◦CD57 will generally go down within 3 months of infection
◦According to Dr. Stricker, the test is valid for children (though responses may be exaggerated) though Dr. Jones shared that he did not find it to be very helpful with children
◦CD57 may go down with Herxheimer reactions.  Inflammation may result in a drop in CD57
◦Elevated CD57 such as 400 may occur.  HIV patients do exist with high CD4 counts as a corollary though the CD4 cells may not work well or function properly.  Thus, CD57 can tell us the quantity of the cells but the issue may be the quality or whether or not the cells can function optimally.  (Another practitioner suggested that many cases of high CD57 show drops in CD57 results once treatment begins)
◦Stem cell therapy is not known to affect CD57 counts though another practitioner commented that she had seen an initial drop in CD57 after stem cell therapy with continued ongoing increases as time passed after stem cell therapy
◦C4a is an inflammation marker.  It generally correlates with symptom presentation
◦C3a is an autoimmune marker
◦C4a can be due to infection
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just found this thread. does anyone know a LLMD in Georgia or the Atlanta area???
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Welcome.

We generally do *not* post LLMD's names in the open here, because state medical boards in some places are keen to stop LLMDs from treating fully, and the result may be harassment and perhaps loss of medical license for LLMDs who treat for Lyme as they deem appropriate.

Some docs like Stricker (mentioned in a post above) are already out in public, and he is/has been high up in ILADS, the main LLMD organization, so it's no secret of his point of view.  Other than self-identified docs, we usually don't post doc names in the open.

That said, if you search

LLMD Atlanta

or

LLMD Georgia

you will likely get some hits, and someone here may also have specific leads for you that they can send you in a private message through this website.

Best wishes --
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and PS, rather than post at the end of an old (2009), long chain of messages like this, I'd suggest you start a new message thread of your own with a title like 'Need LLMD in Atlanta GA area'.  That will highlight your inquiry and might give you better response.
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u havent heard from me for a long time. I have had the lyme disease for four years and finally someone listend to me my doc put me on doxici for four moths took that long to get used to it,it made me so sick then i had a lump removed from my arm pit and my breast broke out,and they told me i had sarcoma but after the removel (removal) they told me they dont know whats wrong with me and would never check my blood now i have to fight them and just fond out i have lupus now me and my doctor and patholigist believe it was caused by the lyme disease. i'm on steroids for the sowllon glands and no blood flow,to nock down the over reacted auto ammune (immune) system then maybe on rift machine for 12 months i'm so darn sick i hurt everywhere and taking the steroids oh talk about head mood changes cause i'm bypolor too . If there is anyone out there that can give me some insight to these too disease, i would be deaply greatful,because the lyme now has gone into lupus  i have had the lyme for almost four years now at least i'm walking now before i couldnd i think its in other stages my heart and kidneys and liver inzimes high all the time ,i have all sorts of blood test and everyone shows my igm high with no igg after the first treatment meds for the lyme it dropped from 2 bands in igm to one and lifted the bands on the igg but the darn lldm dont believe i have lyme so me , my doctor and his friend a patholigist is woking on it alone we know what it is but i need more info than what i'm getting on line i need to talk to people,so please let me hear from u thanks Shama86
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Hi -- Sorry to hear things are not going as well as they should --

A few ideas for you --

Doxycycline is the treatment that previously was always used for Lyme, but it is hard on the stomach and there are other antibiotics that are useful not only in killing the Lyme bacteria but also in breaking up the slimy shields the bacteria hide inside ('biofilms') so the antibiotics can't reach the bacteria.  

Four months of treatment is longer than some docs would give, so points to your docs for going that far, but if they didn't test you for other infections that the Lyme ticks often also carry, then you may have some other infection(s) that need separate treatment from that for Lyme.

As to lupus, that is an autoimmune disease the cause of which is not really known.  An autoimmune disease is your body turning on itself, and that's why the docs gave you steroids, to suppress your immune system to keep it from attacking itself.  

Here's the problem, tho:  Lyme is a bacterial infection, which needs your immune system active and working to kill the Lyme bacteria.  Steroids suppress your immune system, so it's can't kill the Lyme bacteria.

I have read that the traditional medical view of Lyme disease is that if the symptoms continue after antibiotic treatment is finished, then the reason is that your immune system is over-reacting to bacteria that are no longer there -- like after your house has been broken into, you jump sky high for months if you hear a noise outside:  an over-reaction to something that is not there, but used to be.

An over-reaction like that is considered an auto-immune reaction, meaning your immune system is reacting to an infection no longer there.  That is the traditional view of Lyme disease:  it will be killed entirely by a few weeks (or in your case, 4 months) of antibiotics, but if the symptoms continue after treatment, it is because your immune system is still jumping to knock down an infection -- but the infection is gone.  Therefore:  it's an auto-immune reaction.

However, Lyme specialists (LLMDs we patients sometimes call them, shorthand for Lyme-literate MDs, meaning they take a more progressive view of Lyme and related diseases) take what to me is a more logical approach:  if you still have symptoms of Lyme, it's because the infection persists and has not been killed.  

Mainstream docs (nonLLMDs) do not recognize that Lyme bacteria are different from the usual bacterial infections, because Lyme hides in biofilms where the antibiotics can't find them, and also because Lyme has a very long reproductive cycle, and it is only when reproducing that all bacteria are most susceptible to being killed by antibiotics.  There are other bacterial diseases, like tuberculosis (TB), that are also caused by slowly reproducing bacteria, which is why the standard antibiotic treatment for TB is 18 months.  NonLLMDs don't recognize Lyme's own long reproductive cycle, and so they assume the bacteria is dead after a few weeks treatment.

Points to your docs for treating you for 4 months, but it may not have been long enough, and without the cyst-busting drugs, it may have been ineffective anyway.  In addition, you could have other diseases that came from the same ticks but that your docs did not know to test for.  In addition, the tests your docs are using are probably the standard Western blot and ELISA, which are NOT very accurate.

Your docs sound like they want very much for you to get well, but they may well be working from the 'standard' approach suggested by the Infectious Disease Society of America (IDSA).  Instead, you may wish to find a Lyme specialist who follows the approach developed by the International Lyme and Associated Disease Society (ILADS).  You are lucky to be in California, because here docs are not limited to the IDSA approach, and there are some very good Lyme docs in California.

I will send you a private message (PM) with the name of a doc in San Francisco, which I know is a 4 hour drive from where you are, but sometimes that's the way it is.  Also check online for the California Lyme Disease Assn (CALDA) online, which I think has a list of LLMDs.

The ILADS website suggests going to the following website to find an LLMD (take out all the spaces and put a period instead of [dot]):

lyme disease association [dot] org / referral

That is what I would do -- best wishes to you -- let us know what you do and how it goes, okay?
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I have cronic (chronic) lyme disease and just found out last year,my understanding is that meds or a virus cause lupus,and now i have lupus lol so any info on this i could use awaiting more blood work,but not after they removed my boob for cancer i didnt have..i believe i have lupus now i dont heal well,once again any info on this would be nice ty for ur time
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Do check with your doc about the cause of lupus.  It is well established that it is an autoimmune disease.  Some MDs who are not familiar with the more recent research on Lyme may confuse the symptoms of Lyme with the symptoms of lupus, or think that having had Lyme can lead to lupus, but I don't know what they base that theory on.  There is a lot of medical research going back at least 10 years on this point, and the science is still developing.

Given however that Lyme bacteria require much longer treatment with antibiotics than say, strep throat, the short course (a few weeks) of antibiotics most docs give to someone with Lyme may well be inadequate to cure the disease.  The answer would seem not to be assuming an autoimmune reaction, given the known characteristics of Lyme bacteria, but to treat long enough with antibiotics to kill the bacteria (months and months, not weeks) and to use the different kinds of antibiotics and not just one kind, as well as to test for and treat other diseases carried by the same ticks.  Doxy is a start, but many Lyme docs use other meds and in combination.

In your situation, I would find a Lyme specialist for a complete work up and review of your history and treatments to date.  Sounds like a hassle and expensive too, but it beats being sick.  

Best wishes --
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We are also in AZ and have seen the same Dr.   Please give me your impression of him.  My husband is suffering terribly and is in the process of being tested
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I'm not sure how often TheWife32 checks in here -- the post above from her was mid November, so 2 1/2 months ago.  

You might want to send a private message (PM) to her -- in the upper right corner of this website, you'll see:   Inbox / Logout / My Shortcuts.

Click on Inbox, then on 'Compose' and you can write a message to TheWife32, then this website will send a message to her, telling her she has a PM in her inbox here.  Sounds complicated, but works really well.  
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I just found out after 20 years of being ill, initially with ulcerative colitis, then with the addition of a myriad of puzzling and severe symptoms, that my CD57 is 18.  I haven't gotten the Western Blot or Babesia/CPN/etc. work-up results yet, but my ND said that a very low CD57 like this is indicative of mycoplasma infection (and of course, probably Lyme).  

I am single and have no one to help me when I'm ill, but at least now I'm getting some answers.  Being bedridden and completely dysfunctional half the time will certainly lead me to be incredibly grateful for any gains I can make in restoring even the slightest bit of health.  I truly think that aside from cancer (which I've also had), Lyme and its co-infections are the greatest health burden a person can endure, because it leads to so many other diseases and conditions.  Best wishes to everyone here who is dealing with this.
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Thank you for your good wishes, Leslie.  We send the same back to you.  Let us know if we can help.
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I have  a CD level of 32. Neg. for Lyme. Hhpv6 is high and so MMp-9. I see the Dr. on Monday. Anyone have a clue? Is it Lupus? I had Saline implants in 2007 then removed in 2011. I have had Mold exposure and living in apartment now. Anyone have a possible clue?
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So sorry to hear you've been sick for so long.  I hope you have a doctor who knows Lyme well. Being sick for so long, it could take you years to recover.  Hang in there...it will get better with treatment if you don't give up!
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I was negative for Lyme, too.  But I still have it.  Do you have an LLMD who knows the disease well enough to make a clinical diagnosis?  The CDC recently changed their documentation to say that Lyme cannot be excluded when a test is negative. It's a miracle that they actually changed it, but it  could take 20 years for the information to trickle down to doctors.
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I would love a copy of this abstract if you could email it to me.  My email is ***@****.

Thank you and God Bless
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Email addresses are removed from posts here.  You'll want to send a private message to the person you wish to contact.  Just click on their MedHelp ID and when the profile comes us, click on Send A Message in the upper right quadrant.
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Leslie...Our stories are quite similiar.  I was bitten 30 years ago...My CD57 is 28.  My Mycoplasma # was high and now 3 dr.s finally have agreed I have lyme.  It took 12 specialists and 30+ dx's later to get it.  I have over 3 pages of symptoms and bedridden most of the time and on oxygen.  I too live alone.  I truly feel for you!  Feel free to reach out to me!  Christie
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Lablady...I hope by now you have gotten some answers but wanted to share a few things.  My dr. told me Lyme patients have a correlation with mold.  I would strongly recommend a test from Igenix.  Most LLMD's will consider indeterminate bands as positive. I had one positive band on IgG and IgM and 6 IND bands.  This is NOTHING to mess around with!!!  :-)

I had saline implants too in 2008 and still do.
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My son has been on IV antibiotics for 5 months for chronic Lyme Disease (the cost is thru. the roof). He had a tic bite with the bullseye 6 yrs. ago but didn't go for treatment until 2 years ago when he got sick. He tried oral antibiotics, but they did nothing. He seems to be getting somewhat better on the IV's, but his CD57 has not gone up - his results before treatment were a 12, now it's a 10. We're sooo disappointed the CD57 hasn't gone up - what should we do?
       Mom60
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5 months is still early for big changes, unfortunately. Some people need to be on antibiotics for years.
I thikn you need to keep at the antibiotics and also add in some immune factors (antibodies derived from colostrum). The lyme doc prescribed these for me adn my son to hel our therapy, and they have boosted our immune systems.
The ones he prescribed are called transfer factors made by Researched nutritionals - I think you need those prescribed by a doctor. We found another version that is  cheaper and an over the counter product that works too, it has raised our white blood cell count and our CD57 has gone up a bit since using it.
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YouveGot is right, in my experience:  5 months is not a long time in the world of Lyme.  The reason is that Lyme bacteria have a very slow reproductive cycle, and it is when reproducing that they are most susceptible to being killed by antibiotics.  Treatment for tuberculosis, for example, is minimum 18 months, for the same reason:  slow reproduction by the bacteria.

Lyme has other tricks too, that help it hide from antibiotics, so it's a long haul no matter what.

Has your son been tested for other diseases that come with Lyme, like bartonella, babesiosis, and others?  That can complicate treatment and make it slower, but needs to be taken into account.  I had Lyme and babesiosis, and the doc treated the Lyme after eradicating the babesia.  Lyme is a longer treatment course, because of the slow reproduction aspect.

CD57 is an indicator, but not like the gauge on your car's gas tank -- it's just not that precise.  And it takes time for things to come around sometimes.  Don't expect immediate results, and expect bumps in the road along the way -- Lyme is not like an earache.  It's a LOT more complicated.

You might, if you want to, get a second opinion.  Take copies of ALL past tests and lists of medications taken and for how long and in what dosages, and see a qualified and experienced Lyme doc.  Lyme is a developing area of medicine, so there are different approaches to treatment.

Your current doc may be just fine, but sometimes a second opinion gives comfort.

I had been infected for a year or two (maybe longer, dunno really), and treatment was over a year and half.  Six years, like your son, is a very long time, and will take time to treat.

If you need referral to another doc for a second opinion, try emailing to:

contact [at] ilads [dot] org

and tell them your geographical area.  It's a referral function, not a guarantee of a perfect doc, so you might have to try another if the first doesn't work.  ILADS doesn't vet these docs, that I know of, and like I said, it's a developing area of medicine.

Let us know if we can help further -- hang in there!  It's worth the effort.
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Thank you so much for your advise. We were hoping for a better CD57 result. We have spent over $10,000- in IV meds. Do you think oral antibiotics will be just as good as we can't afford to keep this up? My son is seeking a second LLDD opinion-he's filled out all the previsit forms and is now awaiting his apt. date in September which is the earliest apt. Thank you for your help - any more advise is most appreciated!  Mom 60
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My LLMD is very well known in the field, and I was a very sick puppy when I arrived on his doorstep -- but he never suggested IV meds.  It might be useful in some people who haven't otherwise responded, but I also think some docs may overdo it, believing it's best, but maybe it's not.  Lyme is the new disease on the block, so there is no one single right way to deal with it.

Definitely get a second opinion -- it's what I would do.  Can you get on the new doc's short-notice call list in case someone cancels?

Don't worry a lot about the CD57 -- it's just not THAT accurate, and it sometimes takes a while for it to bounce back ... or maybe some people are just at a different natural level.  Dunno.

Have you read Burrascano's treatment guidelines at ILADS [dot] org?  They are a combination of scientific and plain language about Lyme and I find them interesting and useful.

Was your son tested for co-infections that the Lyme ticks often carry?  That can complicate diagnosis and treatment, since they don't all respond to the same meds.  I had babesiosis and Lyme, and the doc treat 'babs' first, then Lyme.  Another common coinfection is bartonella, which has a whole different treatment routine.  Tricky, eh.

Take care, let us know how it goes, okay?  Best wishes to you and your son --
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Just to echo what Jackie said, my doc rarely uses IV abx after the initial period. he says in most cases it's not necessary.
According to Burrascano, it is recomended when there are very bad symptoms in the heart as IV is needed to get high enough saturation in the heart muscle. My doc also used it on one patient who was in a wheelchair as her joints were so damaged.
So as I understand it, unless you have certain particular very severe symptoms, oral is fine.
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Well said.
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My first test was in the 20's. I just did another in June 2012 and mine is 7.   i have been on antibiotics for 10 months so far. I am still learning about this CD57 test and chronic lyme.  YUCK    
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You may want to find yourself a Lyme literate doctor.  I went rounds with ID docs, PCP's and many other specialists.  None had conclusive answers.  I was spinal tapped, and one doc wanted to drill into the bone marrow of my ankle looking for Multiple Myoloma Cancer.
I found a Lyme doc and took antbx for 2 years.  My symptoms improved greatly, though my CD57 is never over 36.  My Dx - late lyme by lyme doc and MS by MS doc. Neither agrees with the other, of course.  No MS meds yet.  MS Doc waiting for MS episode since 2004.  Last month, he said it would come soon.  He's also a psychic :)
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Last month, he said it would come soon.  He's also a psychic :)

==========================
Heh.  :)
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Did you take any IV meds? My doc says a low CD57 after treatment is a high predictor of relapse. He uses it to help determine if treatment should end or continue.  If you just don't see yours coming up, perhaps IV meds are needed to get at the most stubborn bugs.
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I was reading your msg from my husbands site.  I have Lyme as does my husband.  His was not diagnosed until many years after the fact and continually gets worse.  I was diagnosed this year.  I was tested for Lyme and co-infections through Igenics labs and only tested positive  for anapasmosis, not lyme.  I then had a  blood culture Lyme test done that takes 10 to 12 weeks to grow in a dish.  That test was positive for Lyme.  It's an out of pocket expense, $600.00, and i belive it's the Dr. Burascano Lyme test which you can get through an LLMD.  I waited 30 days before taking the test, you must not be on antibiotics or any  or any anti microbial over the counter med's for 30 days prior to testing.  I had not been on anti biotics yet but was taking anti microbial over the counter meds.  Hope that helps.
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is this thread still active?
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It seems it is now! (grin)

Curious that you happened upon this thread just minutes after I posted in another thread:

"About the CD57 test----- if you have to pay for it out of pocket, I'd save the money.  Before taking it, if you do, ask yourself why  so many people have a 'normal' test result while feeling like death warmed over. Then ask yourself why so many who have almost NO symptoms have tests results that are near zero."

But coincidences DO occurs, I know.

This thread is full of conjecture and mis-information about the CD57 NK cells.

One of the responders on this old thread is a person who relies on LymeMD as the source of all wisdom who said in his blog:

"Unfortunately, I am left with the conclusion that it has been of very little help to my patients."

Hmmm.

http://lymemd.blogspot.com/2009/01/cd57.html

Read the entire entry on his blog.

Then go to other forums and read all the varied responses that people have about the CD57. I have------ in toto------ throughout the years. It does seem as if physicians have only read Stricker's article once and believed it and never once read what the patients report. Even Burrascano waffled a bit on it. Just a bit, but how could he waffle more since he's praised it in the past?

Yes, some people will say "my CD57 reflected exactly how I feel".
Almost as many will say "my CD57 reflected the exact opposite of how I feel".

The CD57 may have some worth---- after all, data is data. In the future.




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I've had lyme disease for 8 years and found out 7 months ago. I've done 3  CD57 lymphocytes tests, the first 2 came back at 5 and the latest was 2.
My doc is very knowledgeable about lyme and is a member of ILADS. She plans to go to the ILADS conference next month in San Diego.
My symptoms aren't as bad as others I've heard of, mainly joint pain and fatigue, so I've been doing oral antibiotics. Doxy and flagyl for 3 months with no improvement, and now zithromax and tindamax for 4 months with no improvement. About to try Bicillin LA shots next.

If you can afford it, I would really recommend tindamax over flagyl for killing the cyst form of lyme. It's a second generation flagyl and the side effects are a lot less. It hasn't been out long enough for a generic is the problem.

This site has takeaway info from past ILADS conferences.
http://www.betterhealthguy.com/ilads-2012-boston-conference-takeaways
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"About the CD57 test----- if you have to pay for it out of pocket, I'd save the money.  Before taking it, if you do, ask yourself why  so many people have a 'normal' test result while feeling like death warmed over. Then ask yourself why so many who have almost NO symptoms have tests results that are near zero."

But coincidences DO occurs, I know.

This thread is full of conjecture and mis-information about the CD57 NK cells.

One of the responders on this old thread is a person who relies on LymeMD as the source of all wisdom who said in his blog:

"Unfortunately, I am left with the conclusion that it [ the CD57 test] has been of very little help to my patients."

Hmmm.

http://lymemd.blogspot.com/2009/01/cd57.html

Read the entire entry on his blog.

Then go to other forums and read all the varied responses that people have about the CD57. I have------ in toto------ throughout the years. It does seem as if physicians have only read Stricker's article once and believed it and never once read what the patients report. Even Burrascano waffled a bit on it. Just a bit, but how could he waffle more since he's praised it in the past?

Yes, some people will say "my CD57 reflected exactly how I feel".
Almost as many will say "my CD57 reflected the exact opposite of how I feel".

The CD57 may have some worth---- after all, data is data. In the future.
*****************************************

From the link you gave us Ginger Savely said, about the CD57;

start snip

CD57 could be impacted by Bartonella, Babesia, mold, viruses, PANDAS/PANS, Mycoplasma, and Chlamydia.

Mentioned a low CD57 in one case with Chlamydia pneumoniae with no Borrelia infection.

Does not appear to be reliable in monitoring progress in the short-term.

Should never be ordered more than every 6 months.

Dr. Jones does not use for children. -

end snip

NP Savely knows a bit about the CD57 since she once shared an office with the originator  of that test--- Dr. Stricker. She also wrote an article about it that was printed in the (gasp)--- Public Health Alert rag.

She 'waffled' a bit about it also later on.

******************************

Good luck with your bicillin LA shots. They were what gave me a fairly long lasting remission.
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. a excellent lymes doctor i use is Dr. Kalb in Franklin Tennessee, he combines state of the art medicine with holistic medicine..he has literally saved my life and is currently treating me for lymes. I suffer from lymes carditis and my fatigue was extreme..as well as severe memory loss. i had had gastric bypass 6 years ago so my stomach could not handle doxycylcline..so he put me on ceftriaxone injections i gave myself 2x daily via a port in my arm...it literally saved my life..and no side affects from the ceftriaxone either. my insurance paid for a couple months worth but then i had a pharmacist order it for me ..it came in a powder form in bottles..i only had to add saline and it worked great and only cost me a co pay..for some reason my insurance paid for it..but would pay for the balloon type anymore...they would have cost me $1200 to continue using those but mixing my own was super easy..just a little more time consuming.  FYI the balloons are just a round baseball size ball with ceftriaxone premixed in it..you just hook it up to your port and then you can stick it in your pocket and go about your business..when its empty you just unhook and throw it away...very cool invention..beats having to set with your meds trickiling into your arm via a IV pole...not being able to move for 30 min or longer... how is the bacillin LA shots working?  
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does beta seron for ms cause the cd57 test to be low? I was off the beta for a month befor I took the test? it cam back in th teens 17
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No, it wouldn't cause it too be low. Mine is 8 and I am very sick but that is not always the case.
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According to my LLMD, biological toxins can lower it i.e. mold toxicity and so can viruses.  My CD57 just came back at 8 as well.  It began about 6 months ago at 5, so I wonder if I'm getting better even though I don't feel like it.  My CD57 is the only lab that is out of range, everything else keeps coming back normal.
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I read an article about it not being reliable any more but in my case it matches the way I feel.
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I agree mojogal.  It matches the way I feel as well.  I think maybe perhaps it's a better indicator in some and maybe not so much for others.  
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Check strep titers beta group A.  An autoimmune response to beta strep may cause low CD57.  Have you traveled out side the US rheumatic fever high in Caribbean and Europe, Asia , and Africa.  Have your doctor check at least two of the strep titers ASO and anti-DNase
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Hi I realize this is old but my daughter is 7 and may have Lyme disease.  So we also had a consult at Envita and will be going soon depending on cost.  Please share anything you can.  How is your husband??
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Why not  for children?  My daughter had one.  Shes at 37.
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You asked why Dr. Jones doesn't use the CD57 test on children. I don't know because I never had to address that. You could email Dr. Jones and see if he can  tell you.

But the CD57 is not worth taking if you have to pay for it out of pocket. Even if your insurance pays for it----- that's up to you but as a test for disease progression or regression it's not reliable. As explained here and in other threads many times.
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Hi. I got sick about a year 1/2 ago after touring a farm. I finally found so someone to help me, but I'm confused by results. First, I tested positive for parvovirus, which makes sense because I had a rash indicative of parvovirus. Then, I only tested positive for band 23 on western blot and cd 57 of 36. All of the doctors wouldn't treat me because only band 23 wasn't enough proof of Lyme. I recently had another western blot and Elisa, all came back negative but cd57 is now 22. I also had my blood work sent to a Lyme specialist who said he checked my plasma and couldn't find anything.

Why would I test positive for band 23, which is Lyme specific, and now, nothing, all with a lowering cd57???

Any thoughts?
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The CD57 count is not diagnostic of Lyme by any means!  Things change, especially with Lyme.  You need to find an ILADS trained physician.  Not a Lyme doctor or a Lyme specialist, a Lyme Literate Medical Doctor trained by ILADS.  They know how to work with the testing and Borriella to improve your chances of getting a positive result.

Was this an IGenex western blot?  
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Your cd57 count should only go below 60 if you have chronic Lyme. The fact that it even gets that low probably means there are multiple co-infections and deficiency present.Band 23 on the IgM is very specific to Lyme, and is the only band I tested positive with, and my Lyme specialist has said he is sure I have Lyme Disease. I also was originally diagnosed immediately when my other doctor saw the erythema migrans or bull's eye rash two years ago. It still comes back in the same spot from time to time. He says 1 out of 6  ticks in the state of Florida are now carrying it. I'm wondering if Band 23 is specific to a particular strain here in Florida. Makes sense, since the birds migrate south every winter. There's only one other type of rash that resembles the Lyme bull's eye, and that's from STARI, or Southern Tick   Associated Rash Illness, which carries most of the same symptoms as Lyme, only usually is not as severe. However, Lyme is not as severe in warmer weather, so I think doctors may have made up a new name for Lyme in the south, since originally it was denied that you could catch it outside of New England.
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Just wanted to see if anyone knows if parvovirus, cytomegalovirus, and HHV6 could cause low CD57 counts. Mine is at 59 after only two years of Lyme.
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I would think so.
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I also have parvovirus, which is what you may need further treatment for.
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hi there, i have no chronic lime decease and i tested CD57 "95"  and "44" this year
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I think it is a pea soup.  There is an article that postulates  how all of these chronic diseases like CFS, Fibro, Lyme, MS, Parkinson's, etc actually have multiple overlapping symptoms and none have a single definitive test.   Typically one or more pathogens are implicated but not consistently the same pathogens.  The article postulates that each disease is caused by multiple pathogens that have turned off the immune system as a survival mechanism.  This invites in still more pathogens.  The symptoms in each condition differ slightly based on the individual's particular pea soup recipe, which includes not just exposure to specific germs but also genetics and environment (toxins, physical trauma and surgery, nutrition, emotional stress, etc).  This makes sense to me.  The solution is in repairing our immune systems so our body can fight the invaders once and for all.  It doesn't matter what your diagnosis is ---if you have been ill for 20 years, is almost certainly a dysfunction of your immune system, or you would be over it by now.  The article is "immunostimulation in the era of the metagenome".
http://mpkb.org/home/publications/proal_molecular_2011

I have now been diagnosed with CFS, Fibro, and now Lyme.  They all feel the same to me.  :). Hopefully treating one treats them all.  
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I think how you treat an illness and what you treat an illness with makes a difference.  Different bacteria and viruses have different weaknesses that allow specific medication or herbs or radiation or whatever to kill the invader.  The human immune system is not born with all the antibodies needed to kill all the bacteria and viruses in the world, whether existing now or evolving in the future (like AIDS did).  The immune system can learn to fight particular infections, but it is not born with those specific antibodies in place.
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This a very old post. I've actually discovered this forum as I just received the CD57 value of my son who has been diagnosed with Lyme (and co-infections) three times in a row over the last 15 months.

Somebody advised me to check his CD57 levels. They just came back 209 !
No question that he has Lyme and for over 4 months now he is on a protocol of AB, Samento / Banderol / Cumanda & Reishi.......

The test was taken about two weeks into the above protocol, but he was already using Reishi - rather high level. Currently I'm reaching out to people with Lyme and low CD57 to try Reishi and see if it has a similar impact on them.

I have no other explanation than Reishi for this extremely highly CD57 level. The boy has been really, really sick for over 15 months and even unable to attend school at all for almost 4 months (19 year old now)
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Welcome to MedHelp Lyme --

I am sorry to learn of your son's illness.  

I have not read much about CD57 lately, and it is my impression that CD57 has not been has useful as hoped in diagnosing and tracking the recovery from Lyme disease.  Some physicians will still test for it, I think in order to gather as much information as possible, but it is apparently not the "always reliable" indicator it was hoped for.

Some physicians will follow a purely herbal treatment approach, as your son seems to be using, but other physicians in the US prefer to use antibiotic medicine.  My physician treated me with antibiotics only, and it worked well.  

I had Lyme and also babesiosis.  Has your son been tested for other infections often carried by the Lyme ticks (in addition to Lyme)?  They often require different medication than Lyme does.

Best wishes to your family -- please let us know how we can help.
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