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Do I have lyme?
I received these results from Igenex a few weeks ago now and someone told me somethijg about a CD57 test that leads me to believe I have lyme. Not only did it take me forever to find an LLMD I am now on a waiting list to actually get a doctor's appointment with him. So, I am hoping to just know if I am wasting my time or needlessly worrying or...I need to stay on the list. The test results of concern are:
CD57 NK Cells Absolute CT 25
CD57 NK Cells (% Lympho) 1.10
IFA. B Burgdorferi G/M/A =80
IGM Result Bands 39 IND and 41 +++
IGG Result Bands 39 IND, 41 + and 58 +
Do I have lyme? What is it above that says I do or do not? Any assistance that anyone can afford me is greatly appreciated.
CD57 NK Cells Absolute CT 25
CD57 NK Cells (% Lympho) 1.10
IFA. B Burgdorferi G/M/A =80
IGM Result Bands 39 IND and 41 +++
IGG Result Bands 39 IND, 41 + and 58 +
Do I have lyme? What is it above that says I do or do not? Any assistance that anyone can afford me is greatly appreciated.
Best Answer
PS I just read on another website that there is one variety of magnesium that it NOT recommended for human consumption:
-- magnesium nitrate --
I did a quick search online, and some sites didn't seem worried about it, but I would check more thoroughly before take that particular formulation.
-- magnesium nitrate --
I did a quick search online, and some sites didn't seem worried about it, but I would check more thoroughly before take that particular formulation.
You say, "I would like to understand more about the test reports and how they are different than summary pages. As far as I can tell I have the actual pages from Igenex." That's good ... you could also call them and say that you are not sure you got all the pages (not just a summary) and could they fax/pdf/mail you a full set ("... for my files"). They are very nice to deal with, as I recall. It's a fairly small operation and user-friendly.
"What do I look for? How would I know if I received the entire report or not?" Good question. Your doc should, I think, give you complete copies, but if you are not sure, you could call the doc's office and ask, but that may not give you a reliable answer, tho I think in many (most? all?) states, you are entitled by law to copies: you (or your insurance) paid for the tests, so you should get detailed copies, I would think. You could call the doc's office and ask them ("... for my records") to send you full copies, not just the summary results.
It's possible IGeneX could send you a full set of copies on request too. I don't know what the law requires, but if IGeneX says they aren't able to send you full copies, then I think the doc's office may be required to send the full copies or authorized IGeneX to do so. Can't hurt to ask, and be sure to specify full, detailed copies -- the person who is standing at the copy machine at your doc's office may be trying to save time and toner, but that's no excuse in my view: I (or my insurance company) paid for the tests, so I'm entitled to a copy!
About posting pictures here, I don't know if it is possible, but no one here that I know of is medically trained to comment.
Let us know how it plays out -- ! Hang in there.
"What do I look for? How would I know if I received the entire report or not?" Good question. Your doc should, I think, give you complete copies, but if you are not sure, you could call the doc's office and ask, but that may not give you a reliable answer, tho I think in many (most? all?) states, you are entitled by law to copies: you (or your insurance) paid for the tests, so you should get detailed copies, I would think. You could call the doc's office and ask them ("... for my records") to send you full copies, not just the summary results.
It's possible IGeneX could send you a full set of copies on request too. I don't know what the law requires, but if IGeneX says they aren't able to send you full copies, then I think the doc's office may be required to send the full copies or authorized IGeneX to do so. Can't hurt to ask, and be sure to specify full, detailed copies -- the person who is standing at the copy machine at your doc's office may be trying to save time and toner, but that's no excuse in my view: I (or my insurance company) paid for the tests, so I'm entitled to a copy!
About posting pictures here, I don't know if it is possible, but no one here that I know of is medically trained to comment.
Let us know how it plays out -- ! Hang in there.
I would like to understand more about the test reports and how they are different than summary pages. As far as I can tell I have the actual pages from Igenex.
What do I look for? How would I know if I received the entire report or not? I have a couple of pictures in my phone - is there a way to post one for you to see what I am looking at? Thanks!
What do I look for? How would I know if I received the entire report or not? I have a couple of pictures in my phone - is there a way to post one for you to see what I am looking at? Thanks!
I agree with kathloj's comments. If you did not get a copy of all your tests, I would call the doc's office and politely request them. And specify that you need ALL of the tests, not just summary pages. The tests are yours, you paid for them, and your next doc may read them very differently.
As kathloj says, tests are not the final word, because they can be inaccurate (failing to show a positive result when you really have Lyme etc.), but your next doc will save [your] time and [your] money rerunning tests that were already done. Your doc may want to re-run the same tests (through another lab, perhaps) or have others done, but the more data points the doc has, the better.
Your short biographical data doesn't show where you are, but if you post here (like 'near New Orleans'), someone may have a doc nearby or a Lyme group who could guide you to a nearby Lyme doc. As you have found, not all docs are created equal, so you are right imo to plow ahead and find one who knows more about Lyme. (And even then, docs who say they are Lyme specialists may not know much. It's a fast-changing field of medicine.)
I've related before that I went through 20 very good docs of all kinds who could not figure out what was wrong with me, and No. 20 (for lack anything else to do) ran a basic Lyme test, which came back positive. But the doc said that I "didn't look sick enough" to have Lyme and blew off the test. It was the first hint I had of Lyme ... but an old friend had had it some years before, so I knew from her experience that it was to be taken seriously. I found a Lyme doc and got fully diagnosed and treated and got *well*. That was 7 years ago, and I'm still fine.
Let us know how you do and how we can help.
As kathloj says, tests are not the final word, because they can be inaccurate (failing to show a positive result when you really have Lyme etc.), but your next doc will save [your] time and [your] money rerunning tests that were already done. Your doc may want to re-run the same tests (through another lab, perhaps) or have others done, but the more data points the doc has, the better.
Your short biographical data doesn't show where you are, but if you post here (like 'near New Orleans'), someone may have a doc nearby or a Lyme group who could guide you to a nearby Lyme doc. As you have found, not all docs are created equal, so you are right imo to plow ahead and find one who knows more about Lyme. (And even then, docs who say they are Lyme specialists may not know much. It's a fast-changing field of medicine.)
I've related before that I went through 20 very good docs of all kinds who could not figure out what was wrong with me, and No. 20 (for lack anything else to do) ran a basic Lyme test, which came back positive. But the doc said that I "didn't look sick enough" to have Lyme and blew off the test. It was the first hint I had of Lyme ... but an old friend had had it some years before, so I knew from her experience that it was to be taken seriously. I found a Lyme doc and got fully diagnosed and treated and got *well*. That was 7 years ago, and I'm still fine.
Let us know how you do and how we can help.
Unfortunately ID docs, as well as neurologists are in denial about Lyme disease. Yours also sounds quite ignorant about it. You need to find a LLMD or LLND. The bands you had in your results are significant for Lyme disease. And do keep in mind that Lyme disease is a CLINICAL DIAGNOSIS, and may, or may not be backed up by lab results. Good luck, keep us posted!
So I had an appointment with an ID doctor today and I left very frustrated. He does not feel I have lymehe wants to address my inability to sleep and then retest with Labcorp in two months.
I asked about my IGM Result Bands 39 IND and 41 +++ and IGG Result Bands 39 IND, 41 + and 58 + and he does not know but says he would problem test that way without lyme.
I asked why I show IFA. B Burgdorferi G/M/A =80 . He does not know but thanks equivocal is irrelevant.
I asked why my natural killer cell numbers are so low at 25 and 1.10. He does not know. But I do not have lyme. What are my options here? I do not understand. Is there another possibility?
Isn't Labcorp a waste of time? This office told me I could not just call and make an appointment they had to have a reason to schedule me. So why did they bother? I am already tired and I have not even started! lol
I asked about my IGM Result Bands 39 IND and 41 +++ and IGG Result Bands 39 IND, 41 + and 58 + and he does not know but says he would problem test that way without lyme.
I asked why I show IFA. B Burgdorferi G/M/A =80 . He does not know but thanks equivocal is irrelevant.
I asked why my natural killer cell numbers are so low at 25 and 1.10. He does not know. But I do not have lyme. What are my options here? I do not understand. Is there another possibility?
Isn't Labcorp a waste of time? This office told me I could not just call and make an appointment they had to have a reason to schedule me. So why did they bother? I am already tired and I have not even started! lol
You're quite welcome. You'll see the term 'Lyme brain' from time to time ... it is patient-speak for what Lyme often does to us -- foggy thinking, lousy memory, hard to concentrate. It goes away when the Lyme does, so don't worry. The brain shall return. :)
I have not been taking anything specific for lyme yet. I get confused so easily, it seems, with information swarming in right now. The next day I cannot remember what was for what and why.
I did begin a binder that is broken up into doctor info, insurance, meds, forms, blood tests, etc. So that should help me and I even have a section where I record over the counter stuff which would include supplements.
I will add the magnesium right with the herbal drops my sister sent to me to put in my chamomile tea at night. :) Thank you again!
I did begin a binder that is broken up into doctor info, insurance, meds, forms, blood tests, etc. So that should help me and I even have a section where I record over the counter stuff which would include supplements.
I will add the magnesium right with the herbal drops my sister sent to me to put in my chamomile tea at night. :) Thank you again!
Are you taking magnesium (Mg) supplements? Just like when a baby has onboard a load of milk (which has a lot of Mg in it), it is very soothing, and not only because (as with a baby) it's got a stomach full of warm milk.
A quick glance above doesn't find a mention of Mg by either of us, so here's the short speech: Lyme bacteria use up Mg in their reproductive process. As a result, the body often can become low in Mg, and the results can be poor sleep and twitchy muscles. The body need Mg to convey electrical impulses from cell to tell, and if the muscle cells (for example) are not getting enough Mg to convey the messages to contract and relax, then twitching and cramps can occur. Not in everyone, but since the symptoms of Lyme are many and various, sometimes sleeplessness and twitching and cramps seem just part of the Lyme stew.
To top things off, the American diet is often deficient in Mg (so I read), and then with the Lyme slurping it up too, it's easy to become deficient. I took (and still do take) Mg supplements everyday, and it makes a real difference for me and for others I have spoken with.
Any variety ending in "-ate" (such a Mg malate, orotate, aspartate, citrate, etc.) is most absorbable, so I read, and note that the combo of calcium and magnesium (one brand is called 'CalMag') is for some reason I don't know not particularly effective. So you might try one of the "-ate" fomulations. Even now I take Mg malate every day, and it keeps me feeling normal. NonLLMDs don't seem to know much about this aspect of Lyme depleting Mg in the body, and I even had one nonLLMD tell me it would not only not work, but would give me diarrhea. Well, only if too much is taken, and that's never happened to me and I sensitive to everything that other people tolerate fine. (That particular doc was pretty dense.)
If you decide to take Mg, be sure to tell all current and future docs how much you are taking and how often each day so they can factor that into your situation. And note that it may help you sleep.
A quick glance above doesn't find a mention of Mg by either of us, so here's the short speech: Lyme bacteria use up Mg in their reproductive process. As a result, the body often can become low in Mg, and the results can be poor sleep and twitchy muscles. The body need Mg to convey electrical impulses from cell to tell, and if the muscle cells (for example) are not getting enough Mg to convey the messages to contract and relax, then twitching and cramps can occur. Not in everyone, but since the symptoms of Lyme are many and various, sometimes sleeplessness and twitching and cramps seem just part of the Lyme stew.
To top things off, the American diet is often deficient in Mg (so I read), and then with the Lyme slurping it up too, it's easy to become deficient. I took (and still do take) Mg supplements everyday, and it makes a real difference for me and for others I have spoken with.
Any variety ending in "-ate" (such a Mg malate, orotate, aspartate, citrate, etc.) is most absorbable, so I read, and note that the combo of calcium and magnesium (one brand is called 'CalMag') is for some reason I don't know not particularly effective. So you might try one of the "-ate" fomulations. Even now I take Mg malate every day, and it keeps me feeling normal. NonLLMDs don't seem to know much about this aspect of Lyme depleting Mg in the body, and I even had one nonLLMD tell me it would not only not work, but would give me diarrhea. Well, only if too much is taken, and that's never happened to me and I sensitive to everything that other people tolerate fine. (That particular doc was pretty dense.)
If you decide to take Mg, be sure to tell all current and future docs how much you are taking and how often each day so they can factor that into your situation. And note that it may help you sleep.
So I am just sitting around not really knowing what to do with myself. If you are looking for useful information this is probably not the place. Want to just read someone's rambling lymie story then you are her.
My boyfriend is incredibly patient so far and has even told me he is reading some about lyme. That made me feel good. At the same time though he seems to gently come up with alternative reasons for symptoms and issues. lol
Only a week and a half left before my appointment with the ID doc. I have still yet to hear from the LLMD so the waiting list contiues.
Symptoms seem to cycle. Tremors are bad for a few days. Then my digestive system gets messed up. A couple of days later that seems okay but my left eye twitches and my legs jump like I should have been born as a bunny.
A headache/ hangover feeling shows up for a few days and is then relieved only by my back, arms and legs feeling as though I moved a house full of furniture all by myself. And so on. Rinse and repeat.
I actually feel pretty good I guess. I am thankful I am working. I am amazed sometimes because I often feel pretty worthless and unproductive but I was there! lol I suppose I am really doing okay there and am blessed for that. At least I have not gotten yelled at yet. ;)
It never ceases to amaze me how tired I get and then I awaken after only sleeping 2 hours? How is that possible?! I love it when I can fall back asleep but then a couple of hours later...is the sun up yet? Noop!
Right now I am laying here and he is gently snoring. I am conflicted with deciding if a cup of hot camomile tea would be worth how many times I will have to get up and tinkle...
My boyfriend is incredibly patient so far and has even told me he is reading some about lyme. That made me feel good. At the same time though he seems to gently come up with alternative reasons for symptoms and issues. lol
Only a week and a half left before my appointment with the ID doc. I have still yet to hear from the LLMD so the waiting list contiues.
Symptoms seem to cycle. Tremors are bad for a few days. Then my digestive system gets messed up. A couple of days later that seems okay but my left eye twitches and my legs jump like I should have been born as a bunny.
A headache/ hangover feeling shows up for a few days and is then relieved only by my back, arms and legs feeling as though I moved a house full of furniture all by myself. And so on. Rinse and repeat.
I actually feel pretty good I guess. I am thankful I am working. I am amazed sometimes because I often feel pretty worthless and unproductive but I was there! lol I suppose I am really doing okay there and am blessed for that. At least I have not gotten yelled at yet. ;)
It never ceases to amaze me how tired I get and then I awaken after only sleeping 2 hours? How is that possible?! I love it when I can fall back asleep but then a couple of hours later...is the sun up yet? Noop!
Right now I am laying here and he is gently snoring. I am conflicted with deciding if a cup of hot camomile tea would be worth how many times I will have to get up and tinkle...
Glad to be of help. :) We've all been where you are, so you're in good company.
You say, "The CD57 results are the reason my doctor was willing to refer me to an infectious disease doctor as she does feel that means something but no, she does not feel I have Lyme."
Infectious disease (ID) docs are NOT among the MDs who take Lyme very seriously. The Infectious Disease Society of America (IDSA) is the major voluntary group for ID docs to belong to, so by all means see the ID doc you have an appointment with, but don't be surprised if the doc tells you you're fine after a couple weeks of doxy, no matter how you feel, and the doc may not test you for the other infections the 'Lyme' ticks often carry.
No point in arguing with an ID doc: they follow what the IDSA guidelines are, and often view LLMDs with suspicion. I'd go see the ID doc, see what s/he has to say, and then decide what to do. You may get lucky and have a rogue ID doc, but that isn't generally how it goes.
I'm not a doc, so all I can give you is a worm's-eye view of what happened to me and to others I know. So I would go see the ID doc, get copies of ALL the pages of ALL the test results (not just the summary page), and be a little persistent about it -- docs and their staff don't want to spend time and money printing out stuff most of us can't understand, but you paid for the test, so you are entitled to FULL copies, not just summary pages. You can insist by saying that you have a friend who is a doc and is interested in seeing all the test results, if they make you press that hard -- silly, but that's the way it is in Lymeland.
I would also not tell the ID doc I was considering getting a second opinion from a Lyme doc, because the ID doc likely won't take it well, and you might need that doc in the future.
Then once you've got the ID doc's take on the situation AND full copies of the tests, you can decide whether to go see an LLMD. I sure would.
About your test results: the CD57 is interesting to some docs, but is not (to my understanding) a measure of Lyme infection specifically.
Regarding the IFA test: it is useful but not necessarily the final word. The Columbia University medical center NYC has a well-respected Lyme an Tick-Borne Diseases Research Center. Their website is excellent if you are interested, and it mentions the IFA test and its limitations; it is intended largely for medical personnel but is written to be understandable by patients too and is not too detailed or lengthy. Here is the URL, with some extra spaces etc. included so this system doesn't block it out:
www. columbia-lyme. org/patients/ld_lab_test. html
take out all the spaces and paste that into a browser, and it should get you there. if you have any problems, let us know.
Part of what they say about tests is this ("Bb" is short for Borrelia burgdorferi, the scientific name for Lyme bacteria):
"The Enzyme Linked Immunosorbent Assay (ELISA) is inexpensive, automated, and widely used as a screening test for Lyme disease. A single number is reported that reveals the relative quantity of antibodies in the patient’s serum against the agent of Lyme disease. Most commonly, the whole cell sonicate of Bb is used for the ELISA assay, but this assay can result in both false negatives and false positive. More recently, the C6 Peptide ELISA has been used as a screening assay as it has specificity rates of 90-100%. Unfortunately, the sensitivity of the ELISA and the IFA (immunoflourescence assay) vary considerably, with estimates ranging from 55% to 90% depending upon the clinical manifestations and duration of infection."
Bottom line: the tests are useful, but not anywhere near 100% accurate. That's why having a wise Lyme doc is so important. Your IFA at 80 looks pretty strong, tho, but I'm not a doc. Having data like this to show a Lyme doc is helpful and keeps the process moving. ALWAYS keep your own copies of all test results. That's why Mother Nature made three-ring binders; I still have mine.
About your senstivity to doxy: don't worry. There are several good alternatives, and doxy is usually given only in the very early stages of Lyme anyway, before the bacteria go hide in biofilms. I never was given doxy, and my treatment was quite successful. But be sure your doc notes in your chart that you are allergic to doxy.
About your relatives with Lyme: the so-called 'mainstream' medical community is in denial about how serious and widespread Lyme and its co-infections are -- will be interesting to see what your kin have encountered in diagnosis and treatment. Lyme is everywhere, but the IDSA didn't get the memo.
We're here, keep us posted -- best wishes to you!
You say, "The CD57 results are the reason my doctor was willing to refer me to an infectious disease doctor as she does feel that means something but no, she does not feel I have Lyme."
Infectious disease (ID) docs are NOT among the MDs who take Lyme very seriously. The Infectious Disease Society of America (IDSA) is the major voluntary group for ID docs to belong to, so by all means see the ID doc you have an appointment with, but don't be surprised if the doc tells you you're fine after a couple weeks of doxy, no matter how you feel, and the doc may not test you for the other infections the 'Lyme' ticks often carry.
No point in arguing with an ID doc: they follow what the IDSA guidelines are, and often view LLMDs with suspicion. I'd go see the ID doc, see what s/he has to say, and then decide what to do. You may get lucky and have a rogue ID doc, but that isn't generally how it goes.
I'm not a doc, so all I can give you is a worm's-eye view of what happened to me and to others I know. So I would go see the ID doc, get copies of ALL the pages of ALL the test results (not just the summary page), and be a little persistent about it -- docs and their staff don't want to spend time and money printing out stuff most of us can't understand, but you paid for the test, so you are entitled to FULL copies, not just summary pages. You can insist by saying that you have a friend who is a doc and is interested in seeing all the test results, if they make you press that hard -- silly, but that's the way it is in Lymeland.
I would also not tell the ID doc I was considering getting a second opinion from a Lyme doc, because the ID doc likely won't take it well, and you might need that doc in the future.
Then once you've got the ID doc's take on the situation AND full copies of the tests, you can decide whether to go see an LLMD. I sure would.
About your test results: the CD57 is interesting to some docs, but is not (to my understanding) a measure of Lyme infection specifically.
Regarding the IFA test: it is useful but not necessarily the final word. The Columbia University medical center NYC has a well-respected Lyme an Tick-Borne Diseases Research Center. Their website is excellent if you are interested, and it mentions the IFA test and its limitations; it is intended largely for medical personnel but is written to be understandable by patients too and is not too detailed or lengthy. Here is the URL, with some extra spaces etc. included so this system doesn't block it out:
www. columbia-lyme. org/patients/ld_lab_test. html
take out all the spaces and paste that into a browser, and it should get you there. if you have any problems, let us know.
Part of what they say about tests is this ("Bb" is short for Borrelia burgdorferi, the scientific name for Lyme bacteria):
"The Enzyme Linked Immunosorbent Assay (ELISA) is inexpensive, automated, and widely used as a screening test for Lyme disease. A single number is reported that reveals the relative quantity of antibodies in the patient’s serum against the agent of Lyme disease. Most commonly, the whole cell sonicate of Bb is used for the ELISA assay, but this assay can result in both false negatives and false positive. More recently, the C6 Peptide ELISA has been used as a screening assay as it has specificity rates of 90-100%. Unfortunately, the sensitivity of the ELISA and the IFA (immunoflourescence assay) vary considerably, with estimates ranging from 55% to 90% depending upon the clinical manifestations and duration of infection."
Bottom line: the tests are useful, but not anywhere near 100% accurate. That's why having a wise Lyme doc is so important. Your IFA at 80 looks pretty strong, tho, but I'm not a doc. Having data like this to show a Lyme doc is helpful and keeps the process moving. ALWAYS keep your own copies of all test results. That's why Mother Nature made three-ring binders; I still have mine.
About your senstivity to doxy: don't worry. There are several good alternatives, and doxy is usually given only in the very early stages of Lyme anyway, before the bacteria go hide in biofilms. I never was given doxy, and my treatment was quite successful. But be sure your doc notes in your chart that you are allergic to doxy.
About your relatives with Lyme: the so-called 'mainstream' medical community is in denial about how serious and widespread Lyme and its co-infections are -- will be interesting to see what your kin have encountered in diagnosis and treatment. Lyme is everywhere, but the IDSA didn't get the memo.
We're here, keep us posted -- best wishes to you!
I guess it did not like the symbols so it skipped some of the information when I posted my last response...
CD57 NK Cells Absolute CT
Less than 40 is Low
40 to 98 is Borderline
Greater than 98 is Normal
Mine is 25
CD57 NK Cells (% Lympho)
Less than 2.26 is Low
2.26 to 4.65 is Borderline
4.65 is Normal
Mine is 1.10
IFA. B Burgdorferi G/M/A:
Less than 40 is Negative
40 is Equivocal
Equal to or Greater than is Positive
Mine is Equal to 80
Sorry About that!
CD57 NK Cells Absolute CT
Less than 40 is Low
40 to 98 is Borderline
Greater than 98 is Normal
Mine is 25
CD57 NK Cells (% Lympho)
Less than 2.26 is Low
2.26 to 4.65 is Borderline
4.65 is Normal
Mine is 1.10
IFA. B Burgdorferi G/M/A:
Less than 40 is Negative
40 is Equivocal
Equal to or Greater than is Positive
Mine is Equal to 80
Sorry About that!
Wow! For the first time I feel I have gotten a complete answer and I am able to understand why it might be a yes. The CD57 results are the reason my doctor was willing to refer me to an infectious disease doctor as she does feel that means something but no, she does not feel I have Lyme. I have found and am pursuing an LLMD on my own and am hoping they will call me for an appointment! I have already filled out their forms online and sent copies of the Igenex results as well so hopefully they will see just cause. The reference range on the CD57 Results is as follows:
CD57 NK Cells Absolute CT
98 Normal
Mine 25
CD57 NK Cells (% Lympho)
4.65 Normal
Mine 1.10
The others are:
IFA. B Burgdorferi G/M/A
80 Positive
Mine 80
And then the bands of course were
IGM Result Bands 39 IND and 41 +++
IGG Result Bands 39 IND, 41 + and 58 +
For the first time reading something I somewhat understand a bit about the bands. Thank you so much for taking the time to post this information as you have. It has really been such a help and written in a way that is now starting to sink in and make sense. I have ordered a book that should come in on Friday, The Beginner's Guide to Lyme Disease by McFadzean. Hopefully that is one that is as easy to comprehend. If you know of another please feel free to suggest!
I will have to find an alternative to doxycycline which I understand is the number one prescribed antibiotic - I am allergic to cyclines. Bluck!
Oddly I do feel better. I have not wanted to say anything because you do not want to cry wolf if there is not one. I do not want to sit around in denial - am not that type either because that means ignorance which drives me up a wall. But I am impatient! lol I need to talk to my family and utilize the ones that are in town over the Thanksgiving holidays that have been undergoing treatment for Lyme already. Yes, I now make number six. They all live in Montana though. I am in Louisiana. How freaky is that! Thank you again. You are a blessing, Ms. Jackie! I will figure this out and try to not be afraid or feel alone.
CD57 NK Cells Absolute CT
98 Normal
Mine 25
CD57 NK Cells (% Lympho)
4.65 Normal
Mine 1.10
The others are:
IFA. B Burgdorferi G/M/A
80 Positive
Mine 80
And then the bands of course were
IGM Result Bands 39 IND and 41 +++
IGG Result Bands 39 IND, 41 + and 58 +
For the first time reading something I somewhat understand a bit about the bands. Thank you so much for taking the time to post this information as you have. It has really been such a help and written in a way that is now starting to sink in and make sense. I have ordered a book that should come in on Friday, The Beginner's Guide to Lyme Disease by McFadzean. Hopefully that is one that is as easy to comprehend. If you know of another please feel free to suggest!
I will have to find an alternative to doxycycline which I understand is the number one prescribed antibiotic - I am allergic to cyclines. Bluck!
Oddly I do feel better. I have not wanted to say anything because you do not want to cry wolf if there is not one. I do not want to sit around in denial - am not that type either because that means ignorance which drives me up a wall. But I am impatient! lol I need to talk to my family and utilize the ones that are in town over the Thanksgiving holidays that have been undergoing treatment for Lyme already. Yes, I now make number six. They all live in Montana though. I am in Louisiana. How freaky is that! Thank you again. You are a blessing, Ms. Jackie! I will figure this out and try to not be afraid or feel alone.
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Good for you for pursuing the possibility of Lyme! Many of us did not know (and our doctors were often not aware) of the spread of Lyme, so it took us quite a while to find a knowledgeable MD and be tested.
IGeneX is, imo from what I read and what my Lyme doc indicated, an excellent and far-thinking lab, so if your current doc is the one who ordered the tests you have had done, that is a very good thing -- it shows awareness of Lyme and up-to-date doctoring.
To the specifics:
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CD57 is an outlier, as far as I know -- several years ago there was much hope that it would be a steady indicator of one's immune system status and could be used to measure progress against a Lyme infection. I have not done extensive reading, but it is my impression that CD57 is interesting, but not the silver bullet that was once hoped. It is one data point among many, and so it is useful that way, but is not The One Indicator Above All Else. It may indicate high or low Lyme status but does not correlate closely to the level of infection, as far as I know.
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The tests you list from IGeneX are, however, more defining: they detect and measure the presence of actual Lyme bacteria DNA in your blood.
This testing ability was something of a breakthrough in Lyme diagnosis a few years ago, because the older tests (which are still widely used, called Western blot and ELISA) were less certain indicators of Lyme, because W.blot and ELISA look not for direct evidence of Lyme in your blood, but look instead for your immune system's reaction to the presence of Lyme bacteria: an indirect indicator. Sounds useful, except that one of the tricks Lyme bacteria is that they can and do *suppress* the activity of the immune system against Lyme bacteria, so that the tests may show little or no positive result while you have a raging Lyme infection.
Lyme docs often still use both the ELISA/Western blot combo AND the IgeneX PCR test just as a double check: more data is better, esp. given the problems with ELISA/W.blot and the immune system. My doc ran all of them on me. More data is always good, to balance the strengths and weaknesses of each test against the others.
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You say, "Not only did it take me forever to find an LLMD I am now on a waiting list to actually get a doctor's appointment with him. So, I am hoping to just know if I am wasting my time or needlessly worrying or...I need to stay on the list."
I would stay on the list. Lyme doesn't just go away by itself, and if you have it, I would definitely treat it, along with any other infections (babesia, bartonella, a few others) that the 'Lyme' ticks often carry as well. These possible co-infections need different testing and usually different meds from Lyme, and an LLMD would know from your symptoms which to test for.
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More about your test results so far:
The CD57 natural killer cells are produced by your immune system, which will tell a doc something about your situation and perhaps the strength of your immune system, but are not the last word. Your test paperwork should have not only your numbers (25 and 1.10) but also contain a reference scale to know whether your numbers indicate an infection (just as a thermometer reading of 103 would tell us that you have a fever, but a reading of 99 says probably not. If we didn't already know that 'normal' is 98.6, the actual numbers wouldn't tell us much). You need to know the reference range for the tests to know if they indicate an infection, and that range is usually printed on the test results. I don't recall much about my own CD57 numbers, but wouldn't be too concerned about them overall -- but I'm no doc, so this is just me talking. See what your doc says.
(Side note: *always* get paper copies of ALL test results and keep them in a binder or file at home. You never know when they might be useful going forward. I still have mine!)
A little more detail about the CD57 markers: Again, it is necessary to know the reference range of what is normal for a particular test (like 98.6 is a 'normal' temperature), and remember these are not the last word. (NK stands for 'natural killer' cells, having to do with your immune system reaction to any infection):
CD57 NK Cells Absolute CT 25
CD57 NK Cells (% Lympho) 1.10
I don't have my notes at hand on how those numbers fit into the usual ranges, but your doc will know. Again, CD57 is interesting, but not the last word, to my understanding.
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IFA. B Burgdorferi G/M/A =80
B.burgdorferi is the scientific name for Lyme bacteria: The B is for Borrelia, the family of bacteria to which Lyme belongs; burgdorferi is the sub-class within Borrelia, meaning Lyme itself. Willy Burgdorf was one of the pioneers in Lyme science, and so his name has been given ('burgorferi') to the Lyme bacteria group.
These test results (below)
IGM Result Bands 39 IND and 41 +++
IGG Result Bands 39 IND, 41 + and 58 +
are the original Lyme tests, which rely not on finding bits of Lyme DNA in your blood, but instead look for your immune system's reaction to the presence of Lyme. These are useful tests, but not entirely reliable IF they are negative, because (as mentioned above), the immune system can be suppressed by the Lyme, so that the tests can look normal when really you do have Lyme. These were the only tests available for a long time, so they are still used because they are useful and familiar, but the newer tests are also used: more data leads to greater clarity.
IgM (short for immunoglobulin M) is made by your immune system early in a Lyme infection; IgG (immunoglobulin G) is made later in the course of the infection. These timing difference help the doc know where you are in the illness, time-wise. Some of the 'bands' are highly correlated with Lyme, while others could be Lyme or could be something else your immune system is reacting to. Useful, but not the last word. The more "+" signs, the stronger the indication of infection; "IND" is not strong enough to cause a "+", but still says something is there, so it should be considered as an 'indeterminate' clue. The more Lyme-related bands you have, the more likely it is you have Lyme. The more +++ marks on a band, the stronger the likelihood.
Note that it is possible for someone to have Lyme but not show much at all on these Western blot/ELISA tests, because of the ability of the Lyme bacteria to suppress. That you have these markers appears to me (an amateur) to be fairly significant, and your doc should discuss with you the significance of the markers.
Whew!
The bad news is, it looks like you might have Lyme. The good news is, your immune system is intact and likely working hard. The other question is whether you have any co-infections, and your doc will talk with you about that based on symptoms and then possibly run some more blood tests.
Please try not to worry, tho -- it's hard not to, but the important thing is that you be properly diagnosed and treated. You are doing the right thing and are fortunate that your doc is taking this seriously -- not all docs do.
Keep us posted! We're here hanging around the water cooler, always glad to chat. Sorry that this is a little (?) disjointed -- it's after 2 am here, and it's been a long day. Take care!