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Lyme Symptoms
I had chronic fatigue syndrome 22 years ago which lasted for a year and then subsequently I developed multiple chemical sensitivity. For the last 22 years I've had to avoid certain chemicals/places but have lived fairly normal. About 6 months ago the chemical sensitivity got severe after exposure to a certain chemical and now I have depression, confusion and sensitivities mainly around certain chemicals. I have no fatigue or joint issues. Because this has been going on for so long I saw a physician two weeks ago who is running a bunch of tests for toxicity but we also discussed Lyme. he didn't think I had classic symptoms but is running the tests anyway, one of which is CD57. I haven't followed up with him yet but was able to see the Labcorp CD57 result online which was a 32. My question is does it seem likely that I would have Lyme with the primary symptoms being neurological (confusion, depression) and gastrointestinal issues, with no fatigue or joint issues?
You're quite welcome. I remember well being where you are in the dance with Lyme. It was actually a relief to find out I had it -- so I could get rid of it!
Any doc who is wise enough to test for Lyme through IGeneX is a good sign, so I'd give him the benefit of the doubt on where these other tests are run. I am not up to date on the CD57 aspect, but my hazy understanding is that it hasn't lived up to the hopes of docs for it to be very useful; it's been demoted to 'possibly useful', I think, but again, I'm not up to date.
Because maybe half of us with Lyme also have one or more co-infections, I would be inclined to ask at the next appointment if the doc is considering testing for any co-infections, and if the answer is no, then ask his reasoning. The answer would probably be, "Because you don't exhibit any of the symptoms of other infections." Reasonable answer. But you deserve to have your question answered, and it doesn't sound like this doc is likely to get all huffy if you ask.
Very glad you are making progress. It's a hassle in every way, but definitely worth it and more. I'm now several years post-Lyme and babesia, and oh boy it's good! Keep us posted!
Any doc who is wise enough to test for Lyme through IGeneX is a good sign, so I'd give him the benefit of the doubt on where these other tests are run. I am not up to date on the CD57 aspect, but my hazy understanding is that it hasn't lived up to the hopes of docs for it to be very useful; it's been demoted to 'possibly useful', I think, but again, I'm not up to date.
Because maybe half of us with Lyme also have one or more co-infections, I would be inclined to ask at the next appointment if the doc is considering testing for any co-infections, and if the answer is no, then ask his reasoning. The answer would probably be, "Because you don't exhibit any of the symptoms of other infections." Reasonable answer. But you deserve to have your question answered, and it doesn't sound like this doc is likely to get all huffy if you ask.
Very glad you are making progress. It's a hassle in every way, but definitely worth it and more. I'm now several years post-Lyme and babesia, and oh boy it's good! Keep us posted!
Thank you for all of the information. For all intents and purposes it sounds like I likely do have Lyme, also taking into account the low CD57 result. The other test that my doctor was running was, I believe, something to do with T-cells if I understood what he was saying. It was from a different lab - not Igenex. He hasn't mentioned co-infections to this point. When he asked the nurse to draw the blood for this additional test he mentioned what he was doing and he told her he was 60% sure on the diagnosis. He told me that he thought there were too many things pointing to that to not be Lyme.
Again, thanks for taking the time to respond. I really appreciate it.
Again, thanks for taking the time to respond. I really appreciate it.
Your doc sounds quite thoughtful -- that's good!
I wouldn't worry too much about the CDC result on the tests -- they were, iirc, established not for diagnostic purposes, but for epidemiological purposes -- tracking the spread of Lyme disease. For tracking data like that, it's important that only absolute, 100%-certain positives be included, so that the studies are scientifically reliable. That level of certainty is not required (and should not be) when diagnosing and treating a particular patient. So big points to your doc to knowing that -- too many docs don't, even some of those who call themselves Lyme specialists.
I wonder if the additional test being run is for a possible co-infection -- other, separate diseases that the Lyme ticks also carry about half the time. Will be interesting to see what comes back, and again, your doc sounds quite thorough.
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You say: "IFA (Immunoflorescene Assay) was 40 which is 'equivocal'. The reference ranges are 80 Positive."
My doc didn't use this, but overall, the rule of thumb on many (perhaps all) of these tests is that anything that shows positive should be considered seriously, because if you've got a low-level positive test for a particular infection, **you've still got the infection.** Your immune system may be holding it at bay, or some other reason for the low level result. Again, points to your doc for taking these things seriously.
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You say: "2. IGM Western Blot: one band was 'IND' - Band 41"
IgM (short for 'immunogobulin M') are the antibodies your body produces soon after the initial Lyme infection. After a while, the body switches over to making IgG antibodies. So if it has been a while since you were infected (and many of us [including me] have no idea when we were infected or re-infected), you will tend to have more IgG than IgM, but there is no magic cut-off date when that happens. To my understanding, anything positive or indeterminate should be taken into account: it's *not* a negative result. Also keep in mind that Lyme is capable of suppressing your immune system, so having low or no immunoglobulins also does not mean you do not have Lyme -- so anything positive should be taken seriously.
IND means indeterminate, or 'maybe yes/maybe no', but there is something there triggering a positive, which should be read in context with all the other test results.
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You say: "3. IGG Western Blot: Band 39 was 'IND' and Band 41 had three plus signs next to it '+++'; the interpretation by Igenex says that the scale is 1+ to 4+ so I would think that band 41 is positive."
IgG are the antibodies your immune system makes as the production of IgM ramps down.
-- Band 39 is a 'major protein of Bb flagellin; specific for Bb' -- meaning only Lyme bacteria have this protein. ANY positive level of detection of such a protein is a positive indicated, and should be considered as such in diagnosis. Thus IND [indetermine] still counts as a weak positive, but should not be ignored and should be viewed in context with the other findings.
-- Band 41 is a 'flagellin of all spirochetes; this is usually the first to appear after infection but is not specific to Lyme', because other bacteria in the same family as Lyme can have this indicator. If this were the only indicator you have of Lyme, then it would be questionable whether you have Lyme or something else, but given that you also have other positive bands that show up ONLY in Lyme, this positive band 41 adds evidence to a Lyme diagnosis.
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You say: "4. PCR tests for B. burgdorferi were negative - No DNA detected."
PCR is short for 'polymerase chain reaction', a different kind of test from the ones above. PCR looks not for your immune system reaction to the presence of Lyme, but instead for bits of Lyme DNA floating around in your blood. PCR is helpful especially when the W.blot and ELISA tests are negative (which they easily can be, even in someone with a raging case of Lyme). Why your PCR test is negative, I don't know, but you could ask the doc. That you have positive on the other tests is still valid, even if PCR is negative.
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You say: "My doc also says I have a bad Candida infection and two bacteria in my gut which he thinks is causing a lot of the gut inflammation. He recommended trying to address this first before anything else."
It's good that your doc is looking out for this. Some docs don't. Candida makes you feel lousy and puts a burden on your body and your immune system, so having it treated and gone gives your body a boost to fight the rest of the infections.
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So it sounds like you're on your way to getting well -- yay! Keep us posted -- !
I wouldn't worry too much about the CDC result on the tests -- they were, iirc, established not for diagnostic purposes, but for epidemiological purposes -- tracking the spread of Lyme disease. For tracking data like that, it's important that only absolute, 100%-certain positives be included, so that the studies are scientifically reliable. That level of certainty is not required (and should not be) when diagnosing and treating a particular patient. So big points to your doc to knowing that -- too many docs don't, even some of those who call themselves Lyme specialists.
I wonder if the additional test being run is for a possible co-infection -- other, separate diseases that the Lyme ticks also carry about half the time. Will be interesting to see what comes back, and again, your doc sounds quite thorough.
----------------------------------------------------------------------
You say: "IFA (Immunoflorescene Assay) was 40 which is 'equivocal'. The reference ranges are 80 Positive."
My doc didn't use this, but overall, the rule of thumb on many (perhaps all) of these tests is that anything that shows positive should be considered seriously, because if you've got a low-level positive test for a particular infection, **you've still got the infection.** Your immune system may be holding it at bay, or some other reason for the low level result. Again, points to your doc for taking these things seriously.
----------------------------------------------------------------------
You say: "2. IGM Western Blot: one band was 'IND' - Band 41"
IgM (short for 'immunogobulin M') are the antibodies your body produces soon after the initial Lyme infection. After a while, the body switches over to making IgG antibodies. So if it has been a while since you were infected (and many of us [including me] have no idea when we were infected or re-infected), you will tend to have more IgG than IgM, but there is no magic cut-off date when that happens. To my understanding, anything positive or indeterminate should be taken into account: it's *not* a negative result. Also keep in mind that Lyme is capable of suppressing your immune system, so having low or no immunoglobulins also does not mean you do not have Lyme -- so anything positive should be taken seriously.
IND means indeterminate, or 'maybe yes/maybe no', but there is something there triggering a positive, which should be read in context with all the other test results.
----------------------------------------------------------------------
You say: "3. IGG Western Blot: Band 39 was 'IND' and Band 41 had three plus signs next to it '+++'; the interpretation by Igenex says that the scale is 1+ to 4+ so I would think that band 41 is positive."
IgG are the antibodies your immune system makes as the production of IgM ramps down.
-- Band 39 is a 'major protein of Bb flagellin; specific for Bb' -- meaning only Lyme bacteria have this protein. ANY positive level of detection of such a protein is a positive indicated, and should be considered as such in diagnosis. Thus IND [indetermine] still counts as a weak positive, but should not be ignored and should be viewed in context with the other findings.
-- Band 41 is a 'flagellin of all spirochetes; this is usually the first to appear after infection but is not specific to Lyme', because other bacteria in the same family as Lyme can have this indicator. If this were the only indicator you have of Lyme, then it would be questionable whether you have Lyme or something else, but given that you also have other positive bands that show up ONLY in Lyme, this positive band 41 adds evidence to a Lyme diagnosis.
----------------------------------------------------------------------
You say: "4. PCR tests for B. burgdorferi were negative - No DNA detected."
PCR is short for 'polymerase chain reaction', a different kind of test from the ones above. PCR looks not for your immune system reaction to the presence of Lyme, but instead for bits of Lyme DNA floating around in your blood. PCR is helpful especially when the W.blot and ELISA tests are negative (which they easily can be, even in someone with a raging case of Lyme). Why your PCR test is negative, I don't know, but you could ask the doc. That you have positive on the other tests is still valid, even if PCR is negative.
----------------------------------------------------------------------
You say: "My doc also says I have a bad Candida infection and two bacteria in my gut which he thinks is causing a lot of the gut inflammation. He recommended trying to address this first before anything else."
It's good that your doc is looking out for this. Some docs don't. Candida makes you feel lousy and puts a burden on your body and your immune system, so having it treated and gone gives your body a boost to fight the rest of the infections.
-------------------------------------------------------------------------
So it sounds like you're on your way to getting well -- yay! Keep us posted -- !
Hello -
I got my Igenex results. My doctor thinks I have Lyme but he wants to run another test (not sure what it is). Anyway, here is what the Igenex results are:
-1. IFA (Immunoflorescene Assay) was 40 which is 'equivocal'. The reference ranges are 80 Positive.
2. IGM Western Blot: one band was 'IND' - Band 41
3. IGG Western Blot: Band 39 was 'IND' and Band 41 had three plus signs next to it '+++'; the interpretation by Igenex says that the scale is 1+ to 4+ so I'm guessing that band 41 is positive.
4. PCR tests for B. burgdorferi were negative - No DNA detected.
For each of the tests (Western Blot and PCR) it states 'negative' for the Igenex result and CDC result.
My doc also says I have a bad Candida infection and two bacteria in my gut which he thinks is causing a lot of the gut inflammation. He recommended trying to address this first before anything else.
I got my Igenex results. My doctor thinks I have Lyme but he wants to run another test (not sure what it is). Anyway, here is what the Igenex results are:
-1. IFA (Immunoflorescene Assay) was 40 which is 'equivocal'. The reference ranges are 80 Positive.
2. IGM Western Blot: one band was 'IND' - Band 41
3. IGG Western Blot: Band 39 was 'IND' and Band 41 had three plus signs next to it '+++'; the interpretation by Igenex says that the scale is 1+ to 4+ so I'm guessing that band 41 is positive.
4. PCR tests for B. burgdorferi were negative - No DNA detected.
For each of the tests (Western Blot and PCR) it states 'negative' for the Igenex result and CDC result.
My doc also says I have a bad Candida infection and two bacteria in my gut which he thinks is causing a lot of the gut inflammation. He recommended trying to address this first before anything else.
I'd wait to see what the doc actually says, and then take the test copies and go home and read them yourself and think it through. Tests are often written in such a way that it requires interpretation, and what one doc sees as negative, another doc may see as positive. ... And it's interesting that they nurse said 'inconclusive' -- that suggests that the test results is 'not negative'. And something that is 'not negative' means the test is reacting, but perhaps faintly, but reacting. Lyme often registers that way on tests. Not negative = weak positive, but that still means positive at some level. It ain't nothing.
So don't assume anything. And there's the possibility that the doc doesn't often read IGeneX results and is seeing it oddly. So try to keep a neutral stance for now, go get the test results (full copies, not just a cover sheet!), listen to the doc's interpretation and recommendations, and then consider saying 'Thank you, I need to go home and study these so I understand better and get back to you.'
Then scurry off to you computer and tell us what the test results say AND what the doc says! One of the oddities of Lyme testing is that what looks negative to one doc can say something quite different to another doc.
So try to 'maintain an even strain' as the saying goes, and don't conclude anything yet. Please share the detailed results with us, if you'd like to. No one here has a medical license, but we have a lot of opinions and maybe some suggestions of what we would do next in your situation.
So hang on! The nurse didn't say 'It's negative' -- so there's something there. Go see what it is -- we'll be waiting here if you'd like to share. And be sure to ask for ALL the test results, so the office doesn't just give you a summary cover sheet of results or something. I would always put a friendly face on and say, "Do I have copies of *all* the test results? It helps me to read it all when I am at home and have time to think it through with my family." A lot of patients seem not to care and just rely on what the doc says, but esp with Lyme, seeing the paper work is important in my experience.
Hang on!!! We'll be waiting to hear how it goes.
So don't assume anything. And there's the possibility that the doc doesn't often read IGeneX results and is seeing it oddly. So try to keep a neutral stance for now, go get the test results (full copies, not just a cover sheet!), listen to the doc's interpretation and recommendations, and then consider saying 'Thank you, I need to go home and study these so I understand better and get back to you.'
Then scurry off to you computer and tell us what the test results say AND what the doc says! One of the oddities of Lyme testing is that what looks negative to one doc can say something quite different to another doc.
So try to 'maintain an even strain' as the saying goes, and don't conclude anything yet. Please share the detailed results with us, if you'd like to. No one here has a medical license, but we have a lot of opinions and maybe some suggestions of what we would do next in your situation.
So hang on! The nurse didn't say 'It's negative' -- so there's something there. Go see what it is -- we'll be waiting here if you'd like to share. And be sure to ask for ALL the test results, so the office doesn't just give you a summary cover sheet of results or something. I would always put a friendly face on and say, "Do I have copies of *all* the test results? It helps me to read it all when I am at home and have time to think it through with my family." A lot of patients seem not to care and just rely on what the doc says, but esp with Lyme, seeing the paper work is important in my experience.
Hang on!!! We'll be waiting to hear how it goes.
Sorry to post so many questions. So my Igenex test results came back. I have an appointment with my doctor on Friday but the nurse today told me on the phone that they had reviewed the results and they were inconclusive. I asked her if this mean it is likely I do not have Lyme disease and she said I would have to discuss with the doctor during my appointment. My guess is that whatever test at Igenex they ran it came back negative. Its my understanding that Igenex tests are fairly accurate but I guess that it could always be a false negative? If it is accurate then perhaps it is something other than Lyme causing a low CD 57 result. I'd prefer not to have Lyme but now I am more confused than I was two months ago.
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