Lyme, Cfids and cd57

Discussion in 'Lyme Disease Archives' started by jess, Jan 27, 2008.

  1. jess

    jess New Member

    Hi all, I am still so confused. I just read an article of a detailed analysis of cell-mediated and antibody-mediated immunity test and CFS patients. To make this short, some of the natural killer cells tested were CD-56 and CD-57. The CD-57 were significantly reduced.
    So here it is again, is CFS really Lyme disease or can Cfs also have low CD-57 and be a separate disease. Is it a symptom of Lyme? I keep reading how CFS is a real disease.
    Sorry for bringing this up again but it bothers me because I want to know which one I have. I am treating for Lyme with cats claw and others. I am so sensitive to the cats claw. I am only on 1/2 drop a day. I guess I wish I could know for sure if cfs/fibro is really Lyme. I am so impatient. I guess after 20+ years I am getting tired of not knowing. Sorry to vent, forgive me, Jess
  2. Daisys

    Daisys Member

    I hear you.

    I've been thinking I have had CFS for 30 years, and FM for 22. Now, I find out I have lyme disease, and it could have been lyme all along. Lyme can be a relapsying/remitting illness, but it does progress. If I've had lyme all along, it's been a very slow to progress!

    I've asked my LLMD about this, because I am now also being treated for EBV. I've always had high titers to that virus whenever I've been tested. I had a terrible relapse a little over a year ago, that made my illness entirely different from all the years before. So, I feel I may have gotten lyme at that time.

    My doctor said it's impossible to know. Yes, very frustrating.

    I believe that as more is found out about LD/FM/CFS/ME, subsets will be identified, and we'll be able to see which one we fall into by tests.

    I'm just going to just keep up my treatment, rely on my LLMD to know how to treat me, and be very curious about "what's next?"
  3. hopeful4

    hopeful4 New Member

    Hi Jess,
    Yes, it sure is confusing at times. We all want an answer that we can grab onto, something definitive that we can identify.

    Here's my take at understanding it: CFS (and FM for that matter), are syndromes. They are diagnosed by identifying a set of symptoms, and if you match the symptoms, then you have the diagnosis.

    Different things can contribute to these syndromes such as multiple chemical sensitivity, metal poisoning, and/or underlying infections.

    The doctor who finally diagnosed me with Lyme (after a 5 year odyssey with a CFS/FM diagnosis) said that the Lyme Disease was the underlying cause or trigger of the CFS/FM.

    If you go back to your high school math classes it would be like the SET called Lyme Disease, and the SET called CFS/FM have overlapping circles. But, they do not completely intersect for all people.

    That's just my own explanation and understanding.

    Well wishes,
  4. hopeful4

    hopeful4 New Member

    From my understanding, and I'm not a Dr. or even close, persons with a low CD57 most likely have Lyme Disease. Again, per my previous post, it doesn't mean that they don't also have CFS. CFS is a set of symptoms, the Lyme Disease would be the underlying bacterial infection that wreaks havoc on the body, causing the CFS symptoms.

    From the Health Centers of America website:

    Lyme CD57 Test
    THE CD-57 Striker Panel Test

    Our ability to measure CD-57 counts represents a breakthrough in Chronic Lyme Disease treatment. It can be used to help determine how active the infection is, how well the treatment is working, and whether, after treatment ends, a relapse is likely to occur!

    This is how it works: Chronic Lyme infections are known to suppress the immune system. The Lyme spirochete can affect all major cell types of the immune system, but it most clearly can impact a specific subset of the natural killer cells. This is called the CD-57 subset.

    Just as in HIV infection, which suppresses T-cell counts, Lyme suppresses Natural killer cell count such as CD57. As in HIV infection, where abnormally low T-cell counts are routinely used as a marker of how active the infection is, in Lyme we can use the CD-57 count to indicate how active the Lyme infection is. When Lyme is active, the CD-57 count is suppressed.

    We currently are having our tests run by LabCorp because published research on this test was based on their methods. At this lab, the expected range for the CD 57 count is above 60. However, in the chronic Lyme patient, CD-57 counts are usually well below 60 and may be at risk with levels of 60-100.

    This test can be run at the start of therapy, then every several months to document the effectiveness of treatment. One hopes to see a stable number or a rising trend over time. When antibiotic therapy is finally at an end, if the CD-57 count is not above 60, then a Lyme relapse is more likely to occur.

    Test interpretation: Low CD57 occurs in chronic Lyme or when the disease has been active for over 1 year. A review of the affects of other infections, only Lyme spirochetes lowers the CD57. Following is the criteria established by research.

    Test interpretation: Low CD57 occurs in chronic Lyme or when the disease has been active for over 1 year. The count reflects the degree of infection. It is not a diagnostic test but is used as a marker for Lyme being active. Test done by LabCorp.

    >200 is normal
    < 20 severe illness
    0-60 is seen in chronic Lyme disease
    > 60 Lyme activity indicates improvement

  5. munch1958

    munch1958 Member

    When you read websites for ME/CFS and FM not much info is out there for Lyme. Many still struggle after nearly 30 years to legitimize fatigue based syndromes.

    If you think about it you have a bunch of symptoms for 6 months and instead of getting a diagnosis of a disease you get another diagnosis "CFS" or "FM" depending on whether or not you have muscle pain, IBS, migraines, etc.

    Lyme Disease is a real disease with proven treatments. When you read Lyme websites you will find thousands and thousands of people who were misdiagnosed with CFS or FM first and then recovered with Lyme treatment.

    The intersecting circle example is a very good one. That's not to say that CFS or FM do not exist. There are other causes for fatigue based disorders. That's why testing is so important.

    My FFC testing showed high EBV titers. They said I had active mono when I first went there. Some docs will tell you that EBV cross-reacts with Lyme. Others will say no. It depends on what the doctor personally believes.

    I personally don't think there are any false positives with Lyme. Spirochetes live in the tissues not in the blood stream. That's why testing is so poor. The bacteria is not often found in the blood.

    Lyme likes to live in places where there's lots of collagen like the joints, heart, menengies of the brain
    (that's the stiff neck part) and eyes. Nothing you really "NEED" to function.

    I also had high CPN and candida titers. and was treated for these infections. I didn't recover. When Abx were added I got better.

    I think Lyme puts out the welcome mat for other pathogens. From the moment of the tick bite the saliva from the tick changes the host's immune system. That's because they want to live and proliferate inside of you.

    Borrelia does this by disabling your immune system. Most persons with Lyme have thryoid and adrenal issues. A low body temperature makes you an excellent host for this bacteria. Hypercoagulation or thick sticky blood also enables the spirochetes to hide.

    Everyone with these "syndromes" should have a complete infection panel test including a CD57 count, get their hormone levels tested and get checked for hypercoagulation. All of these can contribute to this "syndrome."
  6. hopeful4

    hopeful4 New Member

    Well said, Munch!
  7. jess

    jess New Member

    Hi, I just want to thank everyone for some great answers and info. What you have all said makes sense to me. I guess part of what bothers me aside from the cfs/Lyme dilemma is that I seem to be in some sort of denial. I don't know why because now at least I have a chance to feel better with some protocols. I too have high EBV titers. However , I have read that there is no such thing as chronic EBV. That EBV virus only lasts for 4 months and then resolves. This is just someone's opinion though and I know there are many.
    I will continue with Buhner protcol and see what happens. My Dr. said if I see no improvement then he will try some anti-virals. I hope we all can get our lives back as soon as possible. Thank you all so much, Jess
  8. hopeful4

    hopeful4 New Member

    Hi Jess,

    It think most of us have been through denial. I see denial as a defense mechanism. After all, how can "I" be so sick? And how can it be "ME" with such a controversial illness or set of illnesses that aren't accepted by the masses and the doctors, and don't even have a clear set of rules for diagnosis and treatment? Where is the support? Am "I" nuts? Why did "I" get thrown into this mess when I was just going along and living my life? Yeah, denial is looking good.

    Even though it can be, and is, a huge challenge to do so, moving into empowerment and self-advocacy can help us move out of the denial that paralyzes us. Talking with each other here, joining a support group, giving and receiving encouragement can be healing.

    When the hour is dark, and denial and fear raise their menacing heads, I find help in this:

    G*d (or your Higher Power) grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

    Well wishes always,