Guest guest Posted February 27, 2010 Report Share Posted February 27, 2010 Hi Carol What lab did the test and what is the reference range? I will have to find my recent labwork to answer with specifics but mine is at the very bottom of the scale. Kendra On Fri, Feb 26, 2010 at 10:06 AM, carol <carolff1212@...> wrote: > Hi everyone, I have been lingering here for several months and learning alot but have never posted till now. I was diagnosed with Lyme in July 09 although I believe I have had it for at least 10 years. I have been on oral abx since July. I didn't notice any improvement till my 4th month on the abx. I felt considerably better for 2 months but then bad again for the past month although not nearly as bad as I was before. I am on my 3rd LLMD - was being treated out of state by the first 2 till I found a local LLMD. The first 2 drs didn't do a CD57 so I was already several months into treatment when I had the first one done. At that point I was at 126. However I just had a second CD57 last month and I am now at 38. Has anyone else's CD57 dropped like that? The dr didn't seem to concerned about it but that drastic of a drop has me worried. > > Thanks, > Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2010 Report Share Posted February 27, 2010 Thanks for your response Kendra. Both tests were done at Labcorp.  The paperwork that the dr gave me says  >200 normal <20 severe illness 0-60 seen in chronic Lyme >60 Lyme activity indicates improvement > Hi everyone,  I have been lingering here for several months and learning alot but have never posted till now.  I was diagnosed with Lyme in July 09 although I believe I have had it for at least 10 years. I have been on oral abx since July.  I didn't notice any improvement till my 4th month on the abx.  I felt considerably better for 2 months but then bad again for the past month although not nearly as bad as I was before.  I am on my 3rd LLMD - was being treated out of state by the first 2 till I found a local LLMD.  The first 2 drs didn't do a CD57 so I was already several months into treatment when I had the first one done.  At that point I was at 126.  However I just had a second CD57 last month and I am now at 38.  Has anyone else's CD57 dropped like that?  The dr didn't seem to concerned about it but that drastic of a drop has me worried. > > Thanks, > Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2010 Report Share Posted March 15, 2010 Allow me to clarify something - my docs do not use the CD57 ALONE to diagnose Lyme. It is just one tool that they use to see what a specific subset of the immune system is doing in Lyme Disease patients - before, during and after treatment. They both (mostly) use a lab in CA to do the WBs and other diagnostic tests for Lyme. A CD57 (LC is the lab) value of 200+ is the goal. I was once at 170, but that the highest we've gotten it treating with ABX and herbs for 5 years. It is somewhere in the 105 range now - last time we checked, anyway. And they are, in fact, testing for the NK killer cells. My docs (and I) believe that any/all of these tests are just useful tools - however, Lyme and the associated " co-infections " are diagnosed based on symptoms and signs of the disease. It sure can help with insurance companies if you have positive tests, but some people will never test positive even though they do have one or more of the TBDs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2011 Report Share Posted December 15, 2011 Great news Aandraya! On Dec 15, 2011 8:42 AM, <Goldstein@...> wrote: I have Kaiser Permanente, a HMO, and they will only allow their lab to do any labwork. It is an awful medical plan in many ways and we are stuck with them for the time being. Kaiser was the HMO who was going to do the Morgellons study, but decided against doing it and gave the study to the military. From: " Aandraya Da Silva " <aandraya@...>bird mites Sent: Thursday, December 15, 2011 12:54:54 AMSubject: Re: CD57- Are you sure? Both HMOs I've had covered my lab tests- they are standard labs form Lab C... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2011 Report Share Posted December 30, 2011 Hi Aandraya, I'm so glad you came out with these good results and thank you very much for the very useful information again ! I print out everything important and collect it in a folder to go to a lyme literate with. So difficult to pick one as there are so many here in Germany, so I probably just stick to the closest one to safe me from hours of travelling. They should all be able to carry out the Igenix western blot Lyme test, shouldn't they ? I have noticed recently that the colour of my blood has turned into a very light red, which, according to my poor knowlege, can only be a) a lot of oxygen in it, or a lack of red blood cells Von: "Goldstein@..." <Goldstein@...>An: bird mites Gesendet: 6:57 Donnerstag, 15.Dezember 2011Betreff: Re: CD57 That great Aandraya and appreciate the update... you have done a fine job and continue to do so! You've been an inspiration to me. From: "Aandraya" <aandraya@...>bird mites Sent: Wednesday, December 14, 2011 9:05:52 PMSubject: CD57 Hi everyone- I got a whole slew of lab results yesterday, nothing extraordinary, everything in "normal range". My CD57 was encouraging- 85 which is high for chronic Lyme. Sept. 2009 it was 14, last June- 59, now 85. I sure don't feel like it's an 85, but I'll take it. For those who don't know what the CD57 is for, it is a Lab Corp test (insurance covers it) that measures a specific kind of white blood cell(killer T cell)/immune system that is found to be dramatically low in chronic Lyme. LLMDs say that when a patient is over 120 AND symptom free for at least 2 months that they can stop treatment with little possibility of relapse. Any sooner relapse is likely. The CD57 goes up very slowly so it's not necessary to do it more than once or twice a year. I've been treating for 26 mos and had it checked 3 times. It is only a marker, but for me it is gratifying to see the levels increase, especially when I don't feel like I'm getting better. Any doctor can order this test and the majority have never heard of it.Hope everyone is doing okay-Aandraya Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2011 Report Share Posted December 30, 2011 HI, Aandraya!I am happy to hear that your test was so much better!Congrats and thanks for update.KRCecilia From: "Aandraya" <aandraya@...>bird mites Sent: Wednesday, December 14, 2011 9:05:52 PMSubject: CD57 Hi everyone- I got a whole slew of lab results yesterday, nothing extraordinary, everything in "normal range". My CD57 was encouraging- 85 which is high for chronic Lyme. Sept. 2009 it was 14, last June- 59, now 85. I sure don't feel like it's an 85, but I'll take it. For those who don't know what the CD57 is for, it is a Lab Corp test (insurance covers it) that measures a specific kind of white blood cell(killer T cell)/immune system that is found to be dramatically low in chronic Lyme. LLMDs say that when a patient is over 120 AND symptom free for at least 2 months that they can stop treatment with little possibility of relapse. Any sooner relapse is likely. The CD57 goes up very slowly so it's not necessary to do it more than once or twice a year. I've been treating for 26 mos and had it checked 3 times. It is only a marker, but for me it is gratifying to see the levels increase, especially when I don't feel like I'm getting better. Any doctor can order this test and the majority have never heard of it.Hope everyone is doing okay-Aandraya Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2011 Report Share Posted December 31, 2011 Aggi-You wan to get an LLMD who has been treating for a long time and who has good treatment outcomes. They do not all treat the same! The Eurolyme group would be able to give you info on doctors in Germany. Believe me, it's not easy to treat, you want someone good.Aandraya On Dec 30, 2011, at 8:04 AM, Aggi Assmann <aggi_assmann@...> wrote: Hi Aandraya, I'm so glad you came out with these good results and thank you very much for the very useful information again ! I print out everything important and collect it in a folder to go to a lyme literate with. So difficult to pick one as there are so many here in Germany, so I probably just stick to the closest one to safe me from hours of travelling. They should all be able to carry out the Igenix western blot Lyme test, shouldn't they ? I have noticed recently that the colour of my blood has turned into a very light red, which, according to my poor knowlege, can only be a) a lot of oxygen in it, or a lack of red blood cells Von: "Goldstein@..." <Goldstein@...>An: bird mites Gesendet: 6:57 Donnerstag, 15.Dezember 2011Betreff: Re: CD57 That great Aandraya and appreciate the update... you have done a fine job and continue to do so! You've been an inspiration to me. From: "Aandraya" <aandraya@...>bird mites Sent: Wednesday, December 14, 2011 9:05:52 PMSubject: CD57 Hi everyone- I got a whole slew of lab results yesterday, nothing extraordinary, everything in "normal range". My CD57 was encouraging- 85 which is high for chronic Lyme. Sept. 2009 it was 14, last June- 59, now 85. I sure don't feel like it's an 85, but I'll take it. For those who don't know what the CD57 is for, it is a Lab Corp test (insurance covers it) that measures a specific kind of white blood cell(killer T cell)/immune system that is found to be dramatically low in chronic Lyme. LLMDs say that when a patient is over 120 AND symptom free for at least 2 months that they can stop treatment with little possibility of relapse. Any sooner relapse is likely. The CD57 goes up very slowly so it's not necessary to do it more than once or twice a year. I've been treating for 26 mos and had it checked 3 times. It is only a marker, but for me it is gratifying to see the levels increase, especially when I don't feel like I'm getting better. Any doctor can order this test and the majority have never heard of it.Hope everyone is doing okay-Aandraya Quote Link to comment Share on other sites More sharing options...
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