JuliaFaith

Below is information regarding the CD57. It may be a good indicator of having Lyme and possibly tracking progress, but keep in mind it is being found to be a bit unpredictable, more & more LLMD's aren't putting as much faith in the test as they use to and it should NOT be relied upon fully for diagnosis of Lyme and/or progress. Your symptoms tell the story and should always be considered first! ~~~~~~~~~~~~~~~~~~~~~~~~~~ A low CD-57 can be related to all Tick Borne Diseases, Lyme, co-infections and possibly even viral co-infections - Dr. S (inventor) explained the different possibilities directly to me at an office visit I had w/him 5/08 ~~~~~~~~~~~~~~~~~~~~~~~~~ Dr. Stricker and Edward Winger were in involved in the discovery of the CD57 blood test and its relation to Lyme Disease. It is often called the "Stricker CD57 or Stricker panel". The test (recommended by most LLMD's) must be done at Labcorp and may be covered by insurance. (If your insurance doesn't cover the test, the cost is around $100-$150) LabCorp test code is 505026 In Dr. Burrascano's Treatment guidelines (I highly recommend that all Lyme patients print this 34 page manual): http://www.ilads.org/lyme_disease/B_gui ... _17_08.pdf on page 8 it explains the CD57 as follows. "Our ability to measure CD-57 represents a breakthrough in LB diagnosis and treatment. Chronic LB infections are known to suppress the immune system and decrease the quantity of the CD-57 subset of natural killer cells. As in HIV infection, where abnormally low T-cell counts are routinely used as a marker of how active that infection is, in LB we can use the degree of decrease of the CD-57 count to indicate how active the Lyme infection is and whether, after treatment ends, a relapse is likely to occur. It can even be used as a simple inexpensive screening test, because at this point we believe that only Borrelia (Lyme bacteria) will depress the CD-57. Thus a sick patient with a high CD-57 is probably ill with something other than Lyme, such as co-infections. When the test is run by Labcorp (preferred lab) we want our Lyme patients to test above 60; a normal count is above 200. There generally is some degree of fluctuation of this count over time and the number does not progressively increase as treatment proceeds. Instead it will remain low until the LB infection is controlled and then it will jump. If the CD-57 count is not in the normal range when a course of antibiotics is ended, then a relapse will almost certainly occur." The CD-57 can be ordered by your doctor through Labcorp using the following info: 505026 HNK1 (CD57)Panel The range of normal on this test is 60-360. Testing low on this test or below 60 indicates very likely active Lyme Disease. As a Lyme patient we "shoot" for 200 before stopping antibiotics (and of course remission of all symptoms for 4 full months) meaning our subset of natural killer cells (part of our immune system related to Lyme) are strong and healthy and fighting. A CD57 can be used as a screening test, but only "works" only if it is low. If a CD57 comes back within normal range, it does no rule out Lyme Disease and co-infections. If symptomatic it is always wise to follow up this test with Igenex testing and then still base treatment on symptoms since no test is 100% reliable. For an excellent explanation of the CD-57 read page 8 of the August 2006 issue of Public Health Alert for "All you wanted to know about the CD-57" : http://www.publichealthalert.org/Articl ... anted.html AND http://heallyme.wordpress.com/2009/01/2 ... d-57-test/ ALSO Description: http://www.anapsid.org/lyme/strickerpanel.html Written by Dr. Stricker's nurse, Ginger Savely regarding two important tests C4A and C3A: http://www.publichealthalert.org/Articl ... %20C4a.htm ~~~~~~~~~~~~~~~~~~~~~~~~~ Longterm decrease in the CD57 lymphocyte subset in a patient with chronic Lyme disease. Stricker RB, Burrascano J, Winger E. California Pacific Medical Center, 450 Sutter Street, Suite 1504, San Francisco, CA 94108, USA. rstricker@usmamed.com Lyme disease is a tick borne illness caused by the spirochete Borrelia burgdorferi. In a previous report we described a decrease in the CD57 lymphocyte subset in patients with chronic Lyme disease. We have now identified a patient with chronic relapsing and remitting symptoms of Lyme disease who had decreased levels of CD57 lymphocytes over 10 years. This observation represents the longest duration of an immunologic abnormality ever documented in chronic Lyme disease. The CD57 lymphocyte subset appears to be a useful marker of long term infection with the Lyme disease spirochete. PMID: 12088407 [PubMed - indexed for MEDLINE] http://www.ncbi.nlm.nih.gov/pubmed/1208 ... d_RVDocSum _________________ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ For more information regarding Lyme Disease Visit: Truth About Lyme Disease Home Page: http://www.truthaboutlymedisease.com Join our faith filled forum now at Facebook: http://www.facebook.com/group.php?gid=1 ... 756&ref=mf Truth About Lyme Disease Video: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Always check with your doctor regarding advice given by me or any member at this forum & any articles & info. at this site. Site disclaimer: viewtopic.php?f=6&t=16

PM'd an article on the CD 57 test.

Thank you!

So good to hear your son's went away quickly. My ds had a bandanna wrapped around his face yesterday, he was so embarrassed about it. We will hope for the best. Take care. Julia

Just another idea. Was going to do Igenex first but decided to see LLMD first and go with their recommendation. So glad I made this decision (for several reasons). We are going to an ND and she recommended that we do some other tests that were much less expensive and spend the extra money on treatment. We are indeed spending a lot of money on treatment and so glad that we went the direction she recommended. We are one of the few on the board not doing abx right away (it may be later in ds treatment) so we are spending a lot on naturopathic, homeopathic and some prescriptions(not abx). Best wishes to you and your child.

Where do you get antibiotic ointment? prescription? We have to be careful not to get any steroidal creams as they are bad for micoplasma. Thank you for your ideas. Best wishes your way!

[ take a picture Thank you for this idea - did this right after reading your response. Take care.

Yesterday, my ds developed a rash (purple dots) on his chin and at the same time a red itchie rash between his thumb and first finger. Also, the rash on his knuckles was pretty red (which he had already got rid of with UNDA 240 cream previously). Thinking this might be herxing? He has not had any other herxing symptoms that I have spotted before this. Thank you for your insights.

Thank you for posting this! It makes me feel like we are in good hands with Dr. K. Also, I now wonder about other family members and their health issues.

DS tested negative for this a while ago but is now being treated with Mastica from another doctor. How long do you have to take Abx. to get rid of it? DS has done at least a month on Biaxin in the past.

Just one visit to a good lyme doctor should answer your questions. Better to have your daughter checked right away than wait if there is a possibility for lyme. My DS presented with flu-like symptoms, including fatigue, stomach-ache, muscle aches, headaches. It took me a little while to get him in to see a LLMD and am glad we did it! You could set up an appt. now because they take a while to get in to see and go from there. Any child that has fatigue for a length of time probably has something going on. Best wishes.

Thank you. Wrote these in my medical book in case this comes up again. Will probably check with the place in Canada too since the cost is so low. Take care.

Thank you for all your ideas. Since we needed it in a couple of days had to fill at the pharmacy. But I did call a pharmacy in Canada and it was $1.23/tab. vs. $23/tab in the US! They had to order it out of London and it would have taken 2-3 weeks which was too long. It really makes you wonder about the pharmaceutical companies (although have been wondering about them for other reasons as well). Figure it will not hurt to file an appeal with our insurance although they will want to talk with the dr. and not sure if dr. would want to do that since they do not deal with insurance at all. Worth a try at $500 for 24 tabs. I feel for everyone else having to deal with insurance and illness at the rate we are having to in order to get healthy.

Ds was instructed to take Alinia for another 30 days after just finishing 30 days. We had no problem getting it covered before. Now with a new insurance company (UHC) they have only agreed to pay for 6 tablets in a 31 day time-frame! This prescription costs around $700 for 1-month. So, I remembered that our dr. said this might happen and looked at my notes. Have a name/no. of a pharmacy in Canada to see how much it will cost there (Mark's Pharmacy). Someone else told me I first have to see a dr. there and then get prescription in order to buy up there. Anyone dealt with this issue?

So glad to hear you are making progress even if it is not quick. Just a thought on the sleepiness (remember my old non-pandas/lyme son has narcolepsy); one of my lyme son's symptoms was fatigue and that would make the narcolepsy much worse so hopefully as you start your lyme treatment that will subside somewhat. My son is on his 2nd month of lyme treatment and he seems to be much less fatigued, cough is gone, tic in throat is gone, and opposition to daily school work has been non-existent for 3 weeks (it was at least 3 times a week before). He has a lot of lung issues and is being treated for those so that could be part of it. That movie was really good for me to watch too! So glad your mom saw it. She seems a bit like my mom so I understand a bit of what you are talking about. After a long time, I finally realized that she is who she is and there is nothing I can do to change her. So now that I understand that and accept it, it makes it easier to talk with her and have a relationship (not too close) where we talk periodically on the phone (the phone is a great thing). Best wishes on your treatment(s) and healing! Julia

When allergy tested, my son did not test 'yes' on any of the allergies, but when we quit gluten, his stomach-aches, at the time (before long-term illness), quit completely within 4 days. There is gluten-free bread. The last time I purchased it was at a Costco!

I agree with SF mom. All the detoxing you can do now with help speed up treatment later. Also, a gluten-free diet helps with inflammation which seems to be pretty big with all the infections. So glad to hear you are on your way to healing.

Elizabeth--your right the dr.'s all seem to have their opinions about all of this and it is interesting to read about all the treatments. All that is really important is that the healing can happen and people can live productive, happy lives. My son is not on any antibiotics right now. He does have pretty severe gut pain, so maybe that is being treated first. Your question about whether he has been Art tested for Abx is a good one and is going on my next visit notes to the dr. Prior abx (for PANDAS) have not provided any relief at all just more stomache pain. Have found your posts very interesting to read and appreciate all the time you put into this forum!

This is so interesting. Ds tested neg. for this some time ago but has had on-going extreme stomach pain. Thank you for the information! Best wishes for your on-going treatments.

Just an update on our last visit in case there is some helpful info. for someone. Our dr. says that 'mold' seems to be a big problem, so we are checking for mold around the house using test kits from Home Depot. Ds cough is gone but there seems to be some lingering fungus/mold issues that are showing up in muscle testing. Changed from Diflucan to Sporanox for treatment. We did order an air purifier from Costco which was recommended by the dr. as well. It is in ds bedroom at night and we move it to the other room that he spends most of his daytime. It was around $500 so not inexpensive! Also, new antimicrobials are: Neem Virescence Mastica Not sure what these are but hoping to do some research on them. Vitamin A, UNDAS for kidney support, and Green "live" clay 2x day were also added. (We discontinued UNDAS that were being taken for PANDAS dr. diagnosis.) Taken off our long list of supplements/med.: Duflican; ketotifen; melatonin; and ivy calm. Ketotifen may have contributed to my son's huge weight gain (>20 lbs) and did not seem to improve his symptoms. So glad to take some off when having to add more! The dr. pretty much tests all of the supplements that ds is taking every time we go in, with muscle testing. Some are discontinued and others are labeled 1-3 depending on how much the body is needing them (3 indicates a strong need). FYI - Dr. said it could take 18 mos. of treatment as there is 'a lot going on and like an onion the layers will reveal themselves along the way." It seems someone else had this same diagnosis. Dr. also believes that people never really get rid of lyme and micoplasma altogether. Have heard that about lyme but not mycoplasma. Those of you on this forum have provided me with so much information, I only hope to contribute as well. Thank you.

We did what SF mom suggests and it was a good decision. We are spending all that $ on treatment instead of the test. We did do some tests but they were very inexpensive in comparison.

PM'd a referral list that I found on-line. It is probably old but may be helpful. It covers the entire U.S. They do not do referrals anymore. Also, the book "Insights into Lyme Disease Treatment" is all about different doctors protocols around the U.S. and Germany. It was published in 2008 so it may also be out of date.

So glad for your progress! Thank you for sharing. After 2 mos. on lyme treatment my ds13 commented this morning that we had a good week of schooling (no opposition like before) but did not connect it to his treatment. He is doing an on-line school but I am supposed to be his 'coach.' Has been very difficult at times but after reading your post am hopeful that he is actually feeling better and that this could possibly continue. Best wishes on continued recovery!

Sent you a PM.

Thank you so much for sharing your experience. We are also on 2 mos. treatment and hoping for some relief soon. Keep sharing and best wishes on recovery! Julia