For those who are 100% sure they have Lyme, what's your CD57 #

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BP
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Date Joined Jul 2010
Total Posts : 34
   Posted 7/4/2010 11:17 PM (GMT -6)   
My new doctor says my CD57 of 38 is a significant sign in the direction of Lyme even though I only have one band on Igenex. I just don't know. I have many other hormone problems that could be causing my symptoms (profound fatigue etc) but just don't seem to have Lyme symptoms and of course don't remember a bite.

Thanks.

CajunGrl
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   Posted 7/5/2010 1:15 AM (GMT -6)   
Hi BP,

Welcome to the forum:) Since you do not have any Lyme symptoms, you may want to get tested for viruses like Epstein Barr, HHV6, Cytomegalovirus, etc. These viruses can cause fatigue. In my opinion, you may still have Lyme Disease but it just may be too early for symptoms to show. To be honest though, it sounds like it could be a virus. That's just my opinion though and I am not a doctor. I also believe that other diseases/illnesses can cause a CD57 to be low but doctors just haven't figured out what it is yet. Again just my opinion.

I hope you get it sorted out soon.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


BP
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Date Joined Jul 2010
Total Posts : 34
   Posted 7/5/2010 1:26 AM (GMT -6)   
Thanks much for the reply.

I have been sick for 14 years and when I first got sick I did have EBV. The last test about 3 years ago showed some antibodies but not horrible. I have a feeling you are right though. I would lean toward the viruses before Lyme but my doc, who seems to be VERY good, says that the only thing CD57 is used for is Lyme. I do not think I agree. I have read otherwise. I also have some antibodies for HHV6 and 7. I've had the a hole bunch of viruses test. What you mentioned and some others. All along the lines of the Standford CFS criteria. BTW, my doc only deals with CFS, Fibro, Hormone problems and viruses etc that goes with CFS.

If you can point me to anything online that talks about CD57 being used for other things, I sure would appreciate it.

Thanks again.

Razzle
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Date Joined Aug 2007
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   Posted 7/5/2010 7:47 AM (GMT -6)   
As far as I know, CD-57 is only used for Lyme...

Mine was very low...something like 39 or so...don't remember the exact number.
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle, Magnesium, homeopathy.


+Lyme
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Date Joined Apr 2009
Total Posts : 1295
   Posted 7/5/2010 11:52 AM (GMT -6)   
BP:
 
My Dr used the CD57 as an additional test to confirm lyme. And a low CD57 like yours usually indicates an older infection, as it took time to run down your immune system. Mine was 60. MY new LLMD says that is on the low side of normal, however, most healthy peoples' numbers are closer to 100 and much higher. The CD57 is specific to Lyme. I've read it used in illessness like AIDS, but there is another CD number generally used for that, and another (CD56, I believe) used for chronic fatigue.

BP, what band showed positive on your WB?

As CG says, we cannot diagnose lyme for you, but all the viruses and hormone problems you and she named are common w/ LYme as well. My new LLMD has been treating Lyme, as well as all other infectious diseases for over 20 yrs. And he is still doing research. AS for the viruses, diseases like fibro and CFS, he said it is very difficult to determine which caused which.

Lyme does damage our immune system, but the others do also. So it's entirely possible that those of us who end up w/ chronic lyme have compromised immune systems, for whatever reason, that prevented our bodies from fighting the Lyme.

I will go back and look at your symptoms again, but again, it is possible to use the CD57 for something else, but NOT a number of things, and it really is pretty specific to Lyme. I think whatever band was positive on your WB would be very significant in your case.


Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Post Edited (+Lyme) : 7/5/2010 10:55:07 AM (GMT-6)


BP
Regular Member


Date Joined Jul 2010
Total Posts : 34
   Posted 7/5/2010 11:59 AM (GMT -6)   
Thank you so much for responding.

IGG - band 41 - IND
IGM - band 41 - +

Do you need the bands that have the ** in front of them?

My doc got a little more concerned because I was born and raised (to age 9) in Germany and she says that's where Lyme started. Again, she is not a LLMD but seem to know a lot.

Just to clarify my other conditions. I have Hashi's, Celiac, Hypothryoid, Hyopadrenal. So with all that in mind it's very hard to figure out where the profound fatigue is coming from. And of course the viruses although not horrible at the moment, don't help the confusion.

+Lyme
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Date Joined Apr 2009
Total Posts : 1295
   Posted 7/5/2010 12:07 PM (GMT -6)   
BP, there is so much you (and we) are dealing with that cause such profound fatigue. Lyme causes fatigue. It attacked my thryroid and adrenals which cause fatigue. I have chronic mono right now, that causes fatigue.

Right now, My LLMD has decided to start w/ abx, because I had 60 days of abx and noted some improvement afterwards. Not to say that that will cure everything, but you have to start somewhere and see where it leads. This is his method, since everyone is so different and because it is not clear what caused what.

But, oh, yes he's going to treat my thryroid because that is a definite problem. Just treating your thyroid can offer some improvement as well.
 
Have you started any treatment for your thyroid?

It is all very complicated, but again, I think you can see a direction that needs to be explored here.


Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 7/5/2010 12:07 PM (GMT -6)   
Yea, I remember reading that CD57 is only used for Lyme. I have a 28...

PacificNW
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Date Joined Jun 2010
Total Posts : 13
   Posted 7/5/2010 10:28 PM (GMT -6)   
My sons CD57 has remained low for a yr now. The lowest was 19.  The latest 21.  I would be thrilled if it were 38 or 39. That is normal for some.  My mom is healthy and hers has alway been at 39.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/5/2010 10:28 PM (GMT -6)   
A CD57 NK Stricker Panel is a marker that is used to diagnose Lyme Disease or Aids. As stated above, there are more tests that are done to diagnose Aids. They don't go by this test alone and the same goes for Lyme Disease. Symptoms, a western blot AND a CD57 is taken into consideration when diagnosing Lyme Disease. When there are no symptoms except for fatigue, and only a 41 on a Western Blot, it is VERY hard to diagnose Lyme Disease and other diseases should be ruled out like viruses, etc.

I said it was "My Opinion" that other illnesses can cause a low CD57, and I still believe that. A CD57 is not always accurate, just like the Western Blot test and other things need to be evaluated before making a definite decision. If it were me, and I had NO symptoms of Lyme Disease, why in the world would I get treated now before looking into other things first? Not everything is Lyme Disease. We have to remember that.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


+Lyme
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Date Joined Apr 2009
Total Posts : 1295
   Posted 7/5/2010 10:55 PM (GMT -6)   
CajunGRl, I apologize profusely if I am the one to whom you have directed your defense. NO ONE here is challenging you beliefs or knowledge.

I sincerely hope that this is a discussion and not a debate.

However, it is a fact that the CD57 generally indicates Lyme if those numbers are low, and not other diseases. NOT in ALL cases, of course, but generally.

I don't believe anyone here has given BP poor advice. No one here has attemped to diagnose him or her. WE have only advised that it appears visiting an LLMD is in order.

AND, certainly NO ONE here has advised treatment for an illness we don't know about.

I just feel that BP needs to go on and visit the LLMD who will be able to chart the symptoms, order and interpret the proper tests, etc. Altho Lyme cannot ever be ruled out, lab tests CAN, in fact, lead one in certain directions w/ the hope certain diseases, infections and syndromes out.

AND with the help of a reputable, genuine LLMD, I believe that BP CAN, in fact, be pointed in the right direction.

O
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


BP
Regular Member


Date Joined Jul 2010
Total Posts : 34
   Posted 7/5/2010 11:27 PM (GMT -6)   
You've all done a brilliant job and I certainly wasn't expecting anyone to diagnose me. I know you have to say that because you're not doctors but I'm very comfortable in the online support world. Were it not for other support groups, I doubt I'd still be here.

I do think though that my virus situation is a big deal in my picture. I got some results back and the EBV situation doesn't look to good. That's what started this for me (female
;>) ) 14 years ago.

I should ask you all, have you all tested Immunoglobulins? If so which ones were out of wack ( G, M, A, subclasses of G)?

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 7/6/2010 1:55 AM (GMT -6)   
Lyme,

It wasn't directed at anyone. i just felt like I had to be clear in what I was trying to say.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 7/6/2010 1:56 AM (GMT -6)   
BP,

I had an Immunoglobulin test done and I think mine were out of wack. Don't quote me on that though. I need to find my results. Since we moved, I have no idea where everything is, lol.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


Razzle
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Date Joined Aug 2007
Total Posts : 4123
   Posted 7/6/2010 5:22 AM (GMT -6)   
My IgA is high. Total IgG is normal, but subclass 2 is high. IgM is normal.
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle, Magnesium, homeopathy.


BP
Regular Member


Date Joined Jul 2010
Total Posts : 34
   Posted 7/6/2010 11:44 AM (GMT -6)   
Thanks for that info.

Does anyone know if the Immuno tests are relevant to the Lyme discussion? In other words, did any of your doctors say, oh this puts it over the edge in the direction of Lyme?

IH8Ticks
Regular Member


Date Joined Jan 2009
Total Posts : 296
   Posted 7/6/2010 12:11 PM (GMT -6)   
Here is a PDF with general information about the CD-57 test (jump to Page 8). http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

The jury is still out on whether CD-57 is specific to Lyme or not. Some doctors believe that it is, some don't. Hence, the controversy. It's also possible that the CD-57 count is specific to Lyme but that other conditions may contribute to how accurate the test is.

One use for the CD-57 test is to track the progress of the infection. If antibiotic treatment eliminates the symptoms, but the CD-57 count is still low, there seems to be a much greater chance of a relapse to occur once you're off the antibiotics.

BP
Regular Member


Date Joined Jul 2010
Total Posts : 34
   Posted 7/6/2010 1:27 PM (GMT -6)   
Thanks much IH8Ticks. I appreciate that pdf.

ktp812
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Date Joined Jul 2007
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   Posted 7/6/2010 3:22 PM (GMT -6)   
I just wanted to add that I had a low (21) CD-57 also and I was seeing Dr. H in New York. He told me he doesn't use this test and didn't really care what my number was. I had it done two other times by my other doctor and they were 38 and 60. It never got any higher and I never felt any different. The 38 was after I had been on abx for 30 months.
I also suffer from chronic fatigue and only had band 41 on my testing (3 tests at different times). Never had any other band show. My doctor finally told me he thought I was dealing with some type of virus attack...so I am no longer being treated.
 
I think just like any other tests..some doctors use them and some don't.
 
 

BP
Regular Member


Date Joined Jul 2010
Total Posts : 34
   Posted 7/6/2010 3:25 PM (GMT -6)   
ktp812, thanks for that info. Very interesting. I think mine is viral also but we'll see. I've taken antibiotics in the past (regular dosage/time) and never felt anything one way or the other.

KO-LD
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Date Joined Aug 2007
Total Posts : 887
   Posted 7/22/2010 5:48 PM (GMT -6)   
Hi, just wanted to add my 2cents, my CD57 was 34 that was after finishing my Dr. Zhang's protocol.  KO
01 Tingling in fingers/toes both sides, not tested at that time for LD
07 Summer pos. WB, diag with LD, neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Dr. Zhang's protocol stopped after 6 months symptoms returned.  Started Buhner's protocol May 2009


BP
Regular Member


Date Joined Jul 2010
Total Posts : 34
   Posted 7/22/2010 6:14 PM (GMT -6)   
Thanks very much for the info.

I got results from EBV panel and sure enough I have a nice (well not actually nice) case of reactivated EBV. It will be interesting to see what my doc says now.

nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 7/22/2010 7:46 PM (GMT -6)   
Mine was in the low 40s, but I can't remember the exact number.

By the way, I too have EBV, CMV, etc.....chronic Lyme patients frequently have high viral loads because Lyme actually damages your immune system and makes it less effective against invaders.
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


BP
Regular Member


Date Joined Jul 2010
Total Posts : 34
   Posted 7/22/2010 8:13 PM (GMT -6)   
Thanks nasalady.

How would one know if they have a damaged immune system?

Has anyone had immunglobulines tested and if so what would indicate an immune system problem, high or low numbers?

Willowrose
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Date Joined Oct 2009
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   Posted 7/22/2010 10:45 PM (GMT -6)   
I'm interested in learning about this too. I only recently had the CD 57 testing and came up at 56 - just below low normal. But what does that mean functionally? Do people with a low number have a greater chance of becoming infected with viruses and other things? Or is it just another marker that may indicate Lyme or some other health problem?

Rose
I have Lyme; it doesn't have me.

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