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BB
01-30-2006, 07:30 PM
Hello Members,

Has anyone had this test done before? I received my results today in the mail and I`m lost. Can anyone interpret this?

% CD8-/CD57+ Lymphs Limits 2-17 My result 1 L
Abs. CD8-CD57+ Lymphs Limits 60-360 My result 23 L

The doc just made a notation on the report "Take nutients as recommended".

Will be seeing a neurologist tomorrow at the Jersey Shore Med Center, I`m hoping he can lead me in the right direction as I have yet to find any help pertaining to the lesions on my gland. Starting to get into a panic mode cause the pain won`t stop so I`m doing this on my own. Even the new LLMD could not give me any reference names for help.

Once again, going through that maze of doctors. One thing I learned in 13 years of dealing with Lyme Disease is that YOU have to do what`s best for YOU or no one will do it for ya. It`s a game of survival. Wish I had something positive to say but things are not so good at home and even worse at work, very frustrated. Maybe the neuro can help? To all, be well and God Bless. BB

wackowoman
01-30-2006, 07:45 PM
BB -

I am so sorry for yet another round of Dr. and questions..... such grief and frustration.

I am not familiar with the tests you are talking about so no help there, just wanted to say sorry and hold on.

Blessings,
Jeanne

6Blues
01-30-2006, 07:56 PM
Hi BB. :)

My LLMD uses this test as a tool to make a diagnosis for Lyme disease. Prior to being tested by Igenex and getting back a postitive result, this was the test that made her begin treating me.

I researched this test when I had it done so I could learn all I could. My memory is just awful but I remember that researchers (named Stricker) found that certain white blood cells (NKC or Natural Killer Cells) are tested and in patients with Lyme, these cells are consistently present in low numbers. The CD8 and CD57 values represent the levels of these cells in your blood.

In January 2005 I had:
- % CD-8/CD57+: 2 (range 2 - 17)
- Abs. CD8/CD57+: 46 (range 60 - 360)

In September 2005 I had:
- % CD-8/CD57+: 1 (range 2 - 17)
- Abs. CD8/CD57+: 15 (range 60 - 360)

As you can see, my numbers dropped. I'll probably get tested again in a few months to see how I'm doing.

In order to help my natural killer cells, I take a supplement called AG Immune. I also try to eat right.

Peace and health to you,
Mickie

BB
01-30-2006, 08:26 PM
wackowomen (Jeanne) Thanks for being here for me :)

6Blues, Your #`s really dropped, is this a good thing or bad? I thought your count would have to be within the limits? Still lost. My doc also recommend to take the Ag immune that your on, I have yet to purchase them. Do you feel they help? BB

6Blues
01-30-2006, 08:35 PM
Hey BB.

My levels going down was a bad thing. On the advice of my LLMD I doubled the AG Immune and put a greater effort on eating right.

When I get tested again I sure hope my numbers are higher!

Wish I could have helped more.

BB
01-30-2006, 08:50 PM
You helped plenty 6Blues, now I understand. I guess our immune systems are pretty beat up from this disease, thus the need for the extra nutients. I`ll pray for your levels to come up on your next test, thanks again Mickie. Time to call it a night, have to be at the neuro`s early and it`s a bit of a hike. Be well, BB.

dianneom
01-31-2006, 06:18 AM
Hi BB,
I saw Dr. Richard Rhee at Jersey Shore Med. Center. Who are you seeing?

Smyle
01-31-2006, 09:04 AM
Hi Guys:

Burrascano talks about CD57 and says that in lyme patients they like to see it above 60. Above 200 is normal. Apparently CD57 stays low until the patient is cured of lyme at which point it should jump up. If this does not occur then relapse is very common. Also, according to Burrascano b.b. is the only organism known at this time to suppress CD57. If CD57 is normal they suspect co-infections or some other cause for illness.

Frango

lymegirl
01-31-2006, 09:10 AM
Dr Rhee is my neurologist too. He is a good guy but I would go to a LLMD who knows more about lyme, I would not rely on him to treat you for lyme. I was dx with MS 6 yrs ago and was never told about lyme, Igenex or any of it. I finally did my own research and asked him to send blood to Igenex. I have to say he is co-operative and will work with LLMD requests, which is more than I can say for other Dr.

Kim

lymegirl
01-31-2006, 09:19 AM
I meant to post my Stricker panel results -

%CD8/CD57+ Lymphs 1 2-17 is normal range
Abs CD8 -CD57+ Lymphs 12 60-360 is normal range

Test was done 3/31/05 and have not been retested since.

sleeperwoken
01-31-2006, 02:15 PM
what do you take for your immune system if your levels are low?

lymegirl
01-31-2006, 04:12 PM
sleeper

I'm taking a suplement called AG Immune from Bodywise. Hoping that, other supplements and exercise is strengthening immune system. Have not had Stricker panel done in almost a year so don't know if it is working. I will have bloodwork redone soon. I think I did read that this number will not gradually go up if you were to test often, so not sure ths test can be used as a measurement during treatment. I think I read about this in Dr Burrascano's treatment guidelines. I have to go back and re-read.

BB
01-31-2006, 06:43 PM
frango, Thanks for the info on the CD57 panel from Dr. B!

dianneom, Yes, I`m also seeing Dr. R, seen him today. I have to agree with lymegirl, he means well but I would rather be treated by a LLMD. First of all I think Dr. R is over loaded with work and he cannot spend any kind of time with his patients. It appears he knows the early stages of the disease but little of the chronic part of it.

We all know muscle twitcing is commen in all of us, he told me today that the twitching is not from the bacteria. He also told me brain SPECT scans are unreliable and that MRI`s are more accurate. It`s funny, I had an MRI back in 1999, came back negative. My former LLMD told me MRI`s are not accurate and to have a brain SPECT done, that came back positive showing 2 lesions on my right side. Same thing in 2003, had an MRI done, negative, a brain Spect a little later showed 1 lesion cleared up, 1 stayed the same and another one formed on the left side of my brain. Now what`s more accurate?

I was not going to argue with the doc and I`m not going to bash him, but I feel he is to over worked and does not understand the chronic stages of the disease. This was my 2nd visit with him, the fisrt was okay, a feelng out period, today was a total letdown. I showed him my report and MRI film for the lesions on my gland and explained about the pain I`m having in that area. I was told my symptoms are stressed induced, given some pills for muscle spasms and a script for an MRI. He told me on the next visit "he would get down to the bottom of this", there won`t be another visit.

What`s a person to do? I was hoping he would at least lead me to another doctor that could help, not. Better stock up on the pain killers and write out a living will soon. Better yet, reserve a room at beautiful Bergen Pines mental institution here in Jersey, "being it`s all in the head". In the words of the immortal Jim Morrison "Jesus, save us". BB

RedeemedChild
02-01-2006, 03:37 AM
THE CD-57 TEST
Our ability to measure CD-57 counts represents a breakthrough in LB diagnosis and treatment.
Chronic LB infections are known to suppress the immune system and can decrease the quantity of the CD-57
subset of the 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 will
depress the CD-57. Thus, a sick patient with a high CD-57 is probably ill with something other than Lyme,
such as a co-infection.
When this test is run by LabCorp (the currently preferred lab, as published studies were based on their
assays), we want our Lyme patients to measure 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 remains 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.

dianneom
02-01-2006, 06:55 AM
Hi BB,

Dr Rhee did not treat me but he started me on Doxy until I could find a Dr near my home . On my first visit he spent 2 1/2 hours with me . I already had an MRI from my first neuro . Dr Rhee did a spinal tap to rule out MS . The lab used too much fluid to do the MS test and too little was left for the Lyme test . At that point Dr Rhee sent my urine sample to Igenex , which resulted in my Lyme diagnosis .

I'm sure that without Dr Rhee I would have been treated for MS .

Dianne

BB
02-01-2006, 09:44 AM
RedeemedChild, Thank you for posting that CD57 panel information, I have copied that for future reference.

Dianneom, I`m so glad that Dr. R was able to help you and you didn`t get cemented into an MS diagnosis like my daughters former teacher had. My daughters teacher was DX with MS 6-7 years ago by her neurologist, before her DX she had found an engorged tick on her kitchen floor, she stated it must have come from her dog. These days her dog is fine, she`s on disability and confined to a wheelchair.

Before she was wheelchair bound she stopped over our house a few years ago, supporting a severe case of bells palsey. I had pleaded with her to be tested for Lyme Disease, I offered to pay for her office visit and blood work and would take her there "if she would see Dr. Rhee". She refused, she stated she loves her neuro who is pumping her with continued steroids.
These days she is so weak she can`t answer the phone, she`s only 44-45 years old.

I had done so in the past and will do so again, if I know of someone who needs help with a possble Lyme DX I will refer them to Dr. R. I feel he is very good with paitients that were misdiagnosed or are in the early to mid stages of LD. For people like myself who have had it for so long and have been bounced around, I would refer them to a LLMD for long term treatment, rather then Dr. R.

Yesterday, I was hoping Dr. R could lead me to someone under the roof of Jersey Shore to help me, it didn`t happen. Just deeply frustrated and I can`t blame him, there were 4 other doctors in the last month who could not offer any help. Years ago I was quoted by a doctor as being one of those lost cause Lyme Disease patients, looking back now I feel he was right. I`m glad Dr. R saved you Diane, God Bless the both of you. Be well, BB.

lymegirl
02-01-2006, 11:49 AM
BB

Have you seen a LLMD? There are afew right in our area, and others within afew hours away. We are lucky help is near, some members on this board have to drive many hours or even fly to a LLMD.

I would not see an infectious disease Dr at Jersey Shore (or any other hospital) for lyme. I was hospitalized (different hospital) last Sept and you should have seen the comments and looks I was getting from the ID dr when I told them I have lyme. They all said 4 weeks treatment was sufficient. I had a PICC line in at the time and they had alot to say about that. They were the same group that handles Jersey Shore.

If you would like some LLMD names let us know.

Kim

BB
02-01-2006, 04:35 PM
Thanks lymegirl but I`m seeing a LLMD now in Jackson, this is my 3rd LLMD here in South Jersey since my Lyme journey began. I need a biopsy done for the lesions on my gland but no one is leading me in the right direction. I`ve hit a brick wall.

As far as dealing with an infectious disease doctor, I`m aware of them. I went through a similar experience with Dr. G in Toms River, even though I presented past positive tests for LD she thought I was crazy. I got the looks also, like I had 2 heads. Learned my lesson back then never to go to an ID duck again. It`s worse enough being sick, then you have most of the medical community treating you like you`re from another planet. Thanks Kim for the heads up on Jersey Shore Medical and the LLMD offer, be well and God Bless. Bob

6Blues
02-01-2006, 06:29 PM
Bob:

I also saw an infectious disease doctor named Dr. G, in Toms River. After examining me, she dismissed my suggestion that I could have Lyme disease. She then told me that I was healthy as a horse and to get out.

My LLMD is in Jackson. Do you go to Dr. E?

BB
02-01-2006, 07:09 PM
Hi 6Blues, I see we traveled the same road a bit. Dr. E it is, my next appt is 2/16. GEEZ! Lot a people on this board that got zapped are from tick infested South Jersey. You had to see the same Dr. G as I did, that`s her. She has no clue about LD, she gave me the boot also so don`t feel bad. I had sopke to a women in Barnaget a few years ago, her fiance was diagnosed with late stage Lyme and was deathly ill. They made the mistake of going to Dr. G for further testing/treatment. In the office visits that followed Dr. G had made her diagnosis on him as MS due to Lyme Disease. I kid you not, this is what his fiance told me. I told them to stay away from the duck and gave them a few names. Scary part she`s still in business, if anyone was to have her license pulled, it ought to be her. Be well, Bob.

StMartinGal
02-02-2006, 02:39 PM
I'm new to this board, but found this thread interesting! I am still waiting for results from my IGeneX western blots, but got results of my Stricker panel already. My CD57 result is 13 (range 60-360). I am also seeing Dr. E. in Jackson! I started with Dr. C. in Mt. Kisco, NY - went there twice. He did not want to do any testing with IGeneX and said he prefers to treat on clinical symptoms. I did not feel comfortable with that and even though I know lab results can't be used alone for diagnosis they must be helpful in some way. I then switched to Dr. E. I've seen her once and go back this Monday. I am curious for feedback about Dr. E. Have those of you who have used her been happy with the treatment? Any concerns I should be aware of or particular questions I should be sure to ask? I am assuming that with my low CD57 she will tell me I have lyme. She did have me start taking the AG Immune supplement and something else called EPA/DHA. I also have a high DHEA SO4 of 281 (range 25-220). Does anyone know if this is lyme related? One of my worst symptoms is MAJOR insomnia so I'm wondering if the DHEA SO4 result could be related to that since I think it's from the adrenal glands.

BB
02-03-2006, 09:16 PM
Hi StMartinGal, I was hoping someone else who has seen Dr. E would chime in for you. I first seen her in 1999 when I was in a world of hurt, she had given me a clinical DX of the co-infection Babesiosis, a blood test later confimed it. Due to a workmans compensation case (long story) I had to leave her care and go back to my LLMD who I seen when I was first infected.

Back then I felt very comfortable with her, she picked right up on the co-infection that many other doctors overlooked and she saved me. Now almost 7 years later I`m back to her, but like you I`ve only seen her once. How she treats you depends on your condition, it seems to me she is trying a new approach for people like myself that have had this a long time. Treating the immune system first, will it work? Time will tell. Back then she treated newbees with ABX, I`d imagine that she still does. The thing is I trust her, she was infected with Lyme Disease years ago, if any doctor knows the disease, she does.

You said you were awaiting your test results from IGeneX, in my opinion they are the best lab for testing for tick borne diseases because that`s what they specialize in. I`m sure she`s testing you for associated co-infections of Lyme Disease also, co-infections, if present need to be addressed first or it will become more difficult to erradicate the Lyme bacteria if indeed you have it.

I see your immune system #`s are very low but she`s aware of that being she started you on suppliments to help boost your immune. I`m sure Dr. E will give you a break down of your lab work which can be very confusing. One thing I like about her is that she listens, but she`s also very informative.
As far as having a high DHEA #, I`m lost on that, maybe someone else can help answer that. One thing I can relate to is major insomnia which can be a symptom of Lyme Disaese. I have very bad spells from time to time, Ambien helps.

I hope you find your answer on Monday, if it is true that you are infected I feel you will be in the care of one of the most experienced LLMD`s. I wish you the best of luck and health, be well. BB