I've been off meds for awhile because I couldn't handle it anymore. I've been pretending to be normal. But my results came back and even though my NK cells are normal, the cd-57 subset is 22. Now I am freaking again.
Posted by lymeinhell (Member # 4622) on :
Go by how you feel. Do you feel normal? That's the real key.
I've been told it's more helpful in diagnosis rather than a monitor of improvement. My Allergist/Immunologist told me the same this as well when I brought all of my CD57 test results to him. He said it's such a tiny part of your overall immune system and that it varies all the time.
I never got above a 22, but have been off abx for almost 6 years now. No relapse. We gave up testing about 1 1/2 years after going off. It just messed with my head.
Posted by BackinStOlaf (Member # 23725) on :
Thank you! that makes me feel better. I have a phone appt with LLMD tomorrow to discuss. So I am wondering if the low result of 22 warrants going back on meds. I feel good except for my nerve damage/tingling that showed up on my EMG from the neurologist. Also a bit of twitching but otherwise feel normal.
Posted by Keebler (Member # 12673) on :
- I've been told by a LL ND that the CD-57 is not the end-all, be-all for measuring anything, actually.
I've been extremely ill but the CD-57 looked reasonable. In your case, it's off but you feel good. So, it's just not a true and sole measure. -
Posted by kday (Member # 22234) on :
With a CD-57 that low, you can bet on a relapse.
Posted by BackinStOlaf (Member # 23725) on :
kday- I understand that as well. which is why I am worried. But do I go back on meds until the number goes up? that is my concern
Posted by kday (Member # 22234) on :
quote:Originally posted by BackinStOlaf: kday- I understand that as well. which is why I am worried. But do I go back on meds until the number goes up? that is my concern
That's for you and your doctor to decide. CD57 typically stays low until it makes a dramatic jump. The test isn't to determine if you are feeling ill or not. When you are feeling well, it's more of potential relapse marker.
Now I know some can live with a low CD57 and not relapse (at least for many years), but that doesn't seem to usually be the case.
Posted by BackinStOlaf (Member # 23725) on :
This blog says that some people who have no symptoms can have low cd 57 whereas some very ill people have high..what do we think about this?
Wildcondor felt great and her CD57 was low. Her healthy non lyme friend's CD57 was even lower than hers...Who really knows, I say go by how you are feeling.
I did not have my CD 57 tested again, personally I dont know if I want to know the answer, I am just trying to get well the best I can. I am currently off ABX due to severe GI issues myself.
Hang in there.
Posted by steve1906 (Member # 16206) on :
Hi BackinStOlaf, here's some info below on CD-57...
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
Good luck, Steve
Posted by CherylSue (Member # 13077) on :
Thanks, Steve. What is the source of the above info?
Posted by 'Kete-tracker (Member # 17189) on :
Quote: The CD-57 count is "more helpful in diagnosis [of Lyme] rather than a monitor of improvement"
Funny but My LLMD said just the opposite one day. He felt you could get an idea if a treatment protocol is working if the Count makes a jump upwards, whereas any single absolute Count is not too useful in determining presence of active LB infection as everyone's CD-57 count varys when healthy.
Posted by BackinStOlaf (Member # 23725) on :
Speaking with my doc today at noon. Will update and see what she says
Posted by TF (Member # 14183) on :
From Burrascano:
"FOR IMMUNE SUPPORT �REISHI MAX � This enhanced extract from cracked spores of the Reishi mushroom has been shown in clinical studies to augment function of the Natural Killer Cells as well as macrophages. Recommended in all patients who have a CD-57 count below 60. Take four a day. Available only from Pharmanex."
Posted by Mariski (Member # 24942) on :
Burrascano said in a talk earlier this year that people should not go off of ABX until they had been symptom free for two months and their CD57 count was over 120.
He said that they would relapse if the CD57 count was lower than 120 when they went off of ABX.
However, my impression is that many other LLMDs do not feel that the CD57 is such a useful indicator, mainly because some people can be symptom free but still have a low CD57 count while others can be very sick but still have a relatively high CD57 count.
Posted by BackinStOlaf (Member # 23725) on :
Just got off the phone with doc. She wants to keep me off meds until all my amalgams are out. She cannot say if my lingering symptoms are from Lyme or Mercury. She doesn't want to pump my body full of more meds if she is not sure. She wants to work on the Mercury now because she said it can suppress the immune system and I won't be rid of lyme unless my immune system is in tip top shape.
I am torn because I read that you shouldn't have any lingering symptoms until you can stop meds. She said as long as I feel ok, we can stay off of meds for now.I do feel ok, except for the tingling but I do have sensory nerve damage so it will be tingling for awhile.
I am still confused and don't feel completely satisfied with the conversation. Part of me thinks I should be on meds while the other part doesn't want to be :/
Posted by lymeinhell (Member # 4622) on :
I can only repeat what my Allergist/Immunologist told me and back it up with no relapse for 6 years now.
I think your Dr is wise to look at other issues, because sometimes what we attribute to 'lyme symptoms' are not in fact lyme - they are the result of other conditions that caused us to fall chronically ill to lyme in the first place. Mercury, other heavy metals, parasites, fungal issues, poor diet/sleep..
Perhaps the twitching is low magnesium that still has not been addressed? A red blood cell magnesium count would be helpful. (Please don't tell me you're taking oral mag - it won't be helpful enough to restore you to normal).
When I first was weaned off abx, I thought 'OMG, I still have all these issues, I'll relapse.' But each issue was either magnesium depletion or yeast or parasites.
Just something to think about.
BTW - I believe I read somewhere that gingivitus and gum disease will also produce a low CD57
Posted by BackinStOlaf (Member # 23725) on :
I had gingivitis in the past but not now..
lymeinhell you are right- we attribute everything to the lyme. It's hard not to Posted by CherylSue (Member # 13077) on :
My doc said she wanted my CD57 over 120 to prevent a Lyme relapse.. If I were still sick with a CD57 over 120, then it was a coinfection that we need to work on.
I'm at 114.
Posted by 'Kete-tracker (Member # 17189) on :
Good post, 'lymeinhell'. We all aren't really sure just What (many of) our remaining symptoms are caused by.
And with the increasing # of microbes & viruses proven to be in- and transmitted by- these ticks, I think we'll be on a learning curve for many years to come.
Posted by lymeinhell (Member # 4622) on :
Yup.
Interestingly enough, I just started back on Oil of Oregano about 2 wks ago because I read somewhere it helps your gall bladder (and I'm trying to hold on to mine). And amazingly my stomach is back to normal.... So, gall bladder, yeast, parasites, mystery bacteria. Who the heck knows? But I haven't had any type of herx reaction so leads me to believe gall bladder (and my lyme bacteria must really still be at bay after 6 yrs).
![[Frown]](frown.gif)