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Need HELP with understanding lyme bloodwork please!!!
Hi everyone! I'm new to this forum and I need some help with understanding my bloodwork results for my lyme test that was done on two seperate occasions with my family doctor, I've been suffering for years with terrible symptoms and it has progressed into alot of problems with my heart. very fast rythums and irregular ones. its been debilitating and I feel like lyme disease might be the answer to alot of my problems. Here are my results that my family doctor recieved back and has told me to go to an infectious disease dic,please help me understand these results
3/15/2012
Lyme disease AB IGM,WB-negitive
23 KD (IGM)-Nonreactive
39 KD (IGM)-nonreactive
41 KD (IGM)-Nonreactive
Lyme Disease C6 AB, Total
W/REFL WB (IGG,IGM)
LYME DISEASE C6 AB= 1.50 H .....This is in bold print (0.90 index is next to my range)
LYME DISEASE ANTIBODIES
(IGG,IGM) WESTERN BLOT
LYME DISEASE AB (IGG) WB= negitive
18 KD (IGG) BAND=non reactive
23 KD (IGG) BAND=reactive (IN BOLD PRINT)
then 28,30,39,41,45,58,66 & 93 are all (IGG)BAND=non reactive
5/23/12 (tested a second time)
LYME DISEASE ANTIBODIES
(IGG,IGM) WESTERN BLOT
LYME DISEASE AB IGG, WB
same results as the first test,only 23 KD (IGG) BAND=REACTIVE
all others non reactive
LYME DISEASE C6 AB,TOTAL
W/REFL WB (IGG,IGM)
LYME DISEASE 6C AB= 1.32 (in bold)
Can someone please explain these results and what they mean? any input would be greatly appreicated
3/15/2012
Lyme disease AB IGM,WB-negitive
23 KD (IGM)-Nonreactive
39 KD (IGM)-nonreactive
41 KD (IGM)-Nonreactive
Lyme Disease C6 AB, Total
W/REFL WB (IGG,IGM)
LYME DISEASE C6 AB= 1.50 H .....This is in bold print (0.90 index is next to my range)
LYME DISEASE ANTIBODIES
(IGG,IGM) WESTERN BLOT
LYME DISEASE AB (IGG) WB= negitive
18 KD (IGG) BAND=non reactive
23 KD (IGG) BAND=reactive (IN BOLD PRINT)
then 28,30,39,41,45,58,66 & 93 are all (IGG)BAND=non reactive
5/23/12 (tested a second time)
LYME DISEASE ANTIBODIES
(IGG,IGM) WESTERN BLOT
LYME DISEASE AB IGG, WB
same results as the first test,only 23 KD (IGG) BAND=REACTIVE
all others non reactive
LYME DISEASE C6 AB,TOTAL
W/REFL WB (IGG,IGM)
LYME DISEASE 6C AB= 1.32 (in bold)
Can someone please explain these results and what they mean? any input would be greatly appreicated
There are couple of LLMD in and around Phillly. I just send PM you one I found online some weeks ago, but I do not know the feedback on this one.
thanks again jackiecalifornia!!!! your information was very helpfull!!! I will deff keep you updated. @mojogal no I am not. Im right outside of phildelphia Pa. I live in the bucks county area. Im trying my best to find a llmd in my area now. I dont want to waste my time now on the infectious disease doctor.
The C6 test appears to be one of the first steps of the standard Lyme screening tests, commonly called an ELISA test. I just did a google search and got a fair number of hits for C6, including the following from the Mayo Clinic-affiliated labs:
----------------------------------------------------------------
REFERENCE RANGE: < or = 0.90
INTERPRETIVE CRITERIA:
or = 1.10 Antibody Detected
[Note from Jackie: your score is 1.5, meaning you got a positive result. Your second testing was also positive at 1.34.]
This ELISA detects both IgG and IgM antibodies against the C6 peptide derived from the V1sE protein of Borrelia burgdorferi, the causative agent of Lyme disease. IgM-specific titers usually peak 4 to 6 weeks after onset of infection and may persist in the presence of disease. IgG levels tend to rise above background levels about 2 to 3 weeks after infection, and may remain elevated in cases of prolonged disease. The C6 peptide antibody ELISA exhibits sensitivity and specificity values greater than 95% for Lyme disease.
[Note from Jackie: sensitivity means the how well the test identifies an invading bacterium like Lyme, and specificity means how well the test identifies the invader as Lyme. "95% sensitivity and specificity" is as good as it gets.]
As recommended by the Food and Drug Administration (FDA) Public Health Advisory, July 7, 1997), all samples with positive or equivocal results in the Lyme Disease C6 Antibody EIA (Screening) should be tested by Western Blot/Immunoblot.
[Note from Jackie: the Western blot is the second, confirmatory test to be REALLY sure you have Lyme, and on the Western blot you are positive for band 23, which shows up ONLY in a Lyme infection.]
Positive or equivocal screening test results should not be interpreted as truly positive until verified as such using a confirmatory assay. [e.g. Lyme Disease Antibodies (IgG, IgM), IBL (serum)]. The screening test and/or immunoblot for Lyme disease antibodies may be falsely negative in early stages of Lyme disease, including the period when erythema migrans is apparent.
Test Performed by: Focus Diagnostics, Inc., 5785 Corporate Ave., Cypress, CA 90630-4750
------------------------------------------------------------------------------------
A Lyme specialist would likely (and I'm NOT medically trained, so don't rely on this as medical advice) say this is a positive Lyme test. A nonLLMD may well say it is NOT a positive test, because only one band shows up on the Western blot, and 'standard' medicine says one band isn't enough, even if that band lights up *only* when Lyme bacteria are present.
This is where having an LLMD in your corner is important: nonLLMDs use the surveillance criteria established by the CDC [Centers for Disease Control] in Atlanta to track the spread of Lyme ... and they want to be VERY sure they are only reporting slamdunk, bet-the-rent-money tests, so the CDC standards should not be relied on for *diagnosis*, but often are by nonLLMDs. (There is also another issue that a Lyme vaccine was created some years ago which didn't work, but because its effect messed with the bands shown on tests, those bands -- which indicate Lyme -- were also excluded from use in diagnosis. Pretty dumb, but that's the way it is.)
So you want an LLMD because s/he would read the tests differently from what a nonLLMD would do, and nonLLMD miss a lot of cases because they use the CDC standards, which are not supposed to BE used for diagnosis.
About your test result declining from 1.50 to 1.34, it's nothing to worry about. There are variations in tests all the time, and both of those results are still quite positive, as I am reading them (NOT a doc tho!).
Those tests are measuring your immune system's reaction to the Lyme bacteria, and over time, your immune system will figure it's killed the invaders and will slow down and stop making antibodies .... which leads to one of Lyme's nastier tricks: it has a very slow reproductive cycle [like TB and leprosy] which means our immune system, which are used to fast-reproducing bacteria, pack up and quit even tho the Lyme bacteria are not all dead. Also, Lyme like to hide in areas of low blood flow, like cartilage, where the immune system doesn't register the presence of the bacteria, and so doesn't make antibodies.
There is another lab, called IGeneX, which tests not for your immune system reaction to Lyme bacteria, but looks for traces of Lyme bacteria DNA. This is direct evidence of Lyme, rather than the indirect measurements by Western blot and ELISA. LLMDs often use IGeneX, but nonLLMDs often don't. That's one reason to see an LLMD.
True story: On my second-to-last doc, she couldn't figure out what was wrong, and in desperation ran the same tests you have had, and they came back positive ... and her response? "Oh, you couldn't possibly have Lyme. I have patients with Lyme, and they are ... all ... near death."
Duh! I took those test results and found an LLMD, and the rest is history.
Get and keep copies of ALL you tests, in your own file or binder, because those data points could be meaningful to a future doc, just like my Lyme tests were to my LLMD but were not to Dr Duh.
Gotta run, hope this helped. Others will weight in to correct my errors and fill in the blank spots I skipped over! It's a good crew here, stay in touch, let us know what you do and how you do, okay? You're on your way! Bless your doc's heart for having an open mind.
----------------------------------------------------------------
REFERENCE RANGE: < or = 0.90
INTERPRETIVE CRITERIA:
or = 1.10 Antibody Detected
[Note from Jackie: your score is 1.5, meaning you got a positive result. Your second testing was also positive at 1.34.]
This ELISA detects both IgG and IgM antibodies against the C6 peptide derived from the V1sE protein of Borrelia burgdorferi, the causative agent of Lyme disease. IgM-specific titers usually peak 4 to 6 weeks after onset of infection and may persist in the presence of disease. IgG levels tend to rise above background levels about 2 to 3 weeks after infection, and may remain elevated in cases of prolonged disease. The C6 peptide antibody ELISA exhibits sensitivity and specificity values greater than 95% for Lyme disease.
[Note from Jackie: sensitivity means the how well the test identifies an invading bacterium like Lyme, and specificity means how well the test identifies the invader as Lyme. "95% sensitivity and specificity" is as good as it gets.]
As recommended by the Food and Drug Administration (FDA) Public Health Advisory, July 7, 1997), all samples with positive or equivocal results in the Lyme Disease C6 Antibody EIA (Screening) should be tested by Western Blot/Immunoblot.
[Note from Jackie: the Western blot is the second, confirmatory test to be REALLY sure you have Lyme, and on the Western blot you are positive for band 23, which shows up ONLY in a Lyme infection.]
Positive or equivocal screening test results should not be interpreted as truly positive until verified as such using a confirmatory assay. [e.g. Lyme Disease Antibodies (IgG, IgM), IBL (serum)]. The screening test and/or immunoblot for Lyme disease antibodies may be falsely negative in early stages of Lyme disease, including the period when erythema migrans is apparent.
Test Performed by: Focus Diagnostics, Inc., 5785 Corporate Ave., Cypress, CA 90630-4750
------------------------------------------------------------------------------------
A Lyme specialist would likely (and I'm NOT medically trained, so don't rely on this as medical advice) say this is a positive Lyme test. A nonLLMD may well say it is NOT a positive test, because only one band shows up on the Western blot, and 'standard' medicine says one band isn't enough, even if that band lights up *only* when Lyme bacteria are present.
This is where having an LLMD in your corner is important: nonLLMDs use the surveillance criteria established by the CDC [Centers for Disease Control] in Atlanta to track the spread of Lyme ... and they want to be VERY sure they are only reporting slamdunk, bet-the-rent-money tests, so the CDC standards should not be relied on for *diagnosis*, but often are by nonLLMDs. (There is also another issue that a Lyme vaccine was created some years ago which didn't work, but because its effect messed with the bands shown on tests, those bands -- which indicate Lyme -- were also excluded from use in diagnosis. Pretty dumb, but that's the way it is.)
So you want an LLMD because s/he would read the tests differently from what a nonLLMD would do, and nonLLMD miss a lot of cases because they use the CDC standards, which are not supposed to BE used for diagnosis.
About your test result declining from 1.50 to 1.34, it's nothing to worry about. There are variations in tests all the time, and both of those results are still quite positive, as I am reading them (NOT a doc tho!).
Those tests are measuring your immune system's reaction to the Lyme bacteria, and over time, your immune system will figure it's killed the invaders and will slow down and stop making antibodies .... which leads to one of Lyme's nastier tricks: it has a very slow reproductive cycle [like TB and leprosy] which means our immune system, which are used to fast-reproducing bacteria, pack up and quit even tho the Lyme bacteria are not all dead. Also, Lyme like to hide in areas of low blood flow, like cartilage, where the immune system doesn't register the presence of the bacteria, and so doesn't make antibodies.
There is another lab, called IGeneX, which tests not for your immune system reaction to Lyme bacteria, but looks for traces of Lyme bacteria DNA. This is direct evidence of Lyme, rather than the indirect measurements by Western blot and ELISA. LLMDs often use IGeneX, but nonLLMDs often don't. That's one reason to see an LLMD.
True story: On my second-to-last doc, she couldn't figure out what was wrong, and in desperation ran the same tests you have had, and they came back positive ... and her response? "Oh, you couldn't possibly have Lyme. I have patients with Lyme, and they are ... all ... near death."
Duh! I took those test results and found an LLMD, and the rest is history.
Get and keep copies of ALL you tests, in your own file or binder, because those data points could be meaningful to a future doc, just like my Lyme tests were to my LLMD but were not to Dr Duh.
Gotta run, hope this helped. Others will weight in to correct my errors and fill in the blank spots I skipped over! It's a good crew here, stay in touch, let us know what you do and how you do, okay? You're on your way! Bless your doc's heart for having an open mind.
Thank you Jackiecalifornia! I will look for an llmd in my area asap! Now could you please explain the number under the lyme disease C6 Ab?first it was 1.50 then on second testing it went down to 1.34? its deffinitely out of there range,but is this another indicator of having lymes? Thank you again for your quick response
Welcome!
Big points to your GP for running the tests and for then knowing you need to see a specialist.
There is much controversy in the medical world about how to diagnose Lyme, and because your tests seem to show only a few reactive bands, many docs might tell you they do not indicate Lyme. Unfortunately, that is the kind of analysis you might get from an infectious disease (ID) doc, because the standards ID docs use to diagnose Lyme require not just one positive band on these tests, but several.
The 'need more than one band' approach was developed not for patient diagnosis, but for tracking the spread of Lyme across the country, and for tracking purposes, it's okay to overlook actual cases of Lyme in order to be sure that the data are pure and beyond question really really REALLY Lyme.
Docs still cling to those high standards in diagnosing patients, but that means they overlook many true cases of Lyme. So the trick is to take the test results to a doc who will know that a positive band 23 means Lyme.
Sadly, infectious disease docs are among the leaders in denying Lyme diagnoses, so (having been there myself), I would strongly suggest you find a Lyme specialist who thinks more advanced thoughts about Lyme. It looks like you are between Philly and NYC, which is Lyme country for sure. If someone on this site doesn't send you a message with the name of a suggested Lyme specialist, you can email to
contact [at] ILADS [dot] org
and tell them where you are located. ILADS (International Lyme and Associated Diseases Society) is the main voluntary group for Lyme specialists and can refer you to an LLMD [which is not a formal designation but instead is patient slang for 'Lyme literate MD', meaning a doc who thinks broader thoughts about Lyme and will also consider whether you have other illnesses (co-infections) that the Lyme ticks also carry about half the time.
A nonLLMD would be likely to treat you for a couple of weeks of doxycycline, but as long you have been ill, that is (acc. to ILADS) insufficient in an established case of Lyme, for reasons I won't bore you with here. A nonLLMD is also not likely to consider co-infections, including bartonella, babesiosis and ehrlichiosis, which need separate testing and treatment if they are present.
Be sure to get and KEEP you own set of test results for all work you have done, because they could be useful going forward -- Lyme treatment takes time, and there are twists and turns in the road -- others have posted here about finding out they have an additional co-infection that didn't show itself until well into treatment.
Bottom line: I would DEFINITELY find a Lyme specialist. It took me 20 docs to find out there was such a thing, and without an LLMD, I would not have been treated and well.
Let us know if we can help further, and let us know how you do! This is progress -- !
Big points to your GP for running the tests and for then knowing you need to see a specialist.
There is much controversy in the medical world about how to diagnose Lyme, and because your tests seem to show only a few reactive bands, many docs might tell you they do not indicate Lyme. Unfortunately, that is the kind of analysis you might get from an infectious disease (ID) doc, because the standards ID docs use to diagnose Lyme require not just one positive band on these tests, but several.
The 'need more than one band' approach was developed not for patient diagnosis, but for tracking the spread of Lyme across the country, and for tracking purposes, it's okay to overlook actual cases of Lyme in order to be sure that the data are pure and beyond question really really REALLY Lyme.
Docs still cling to those high standards in diagnosing patients, but that means they overlook many true cases of Lyme. So the trick is to take the test results to a doc who will know that a positive band 23 means Lyme.
Sadly, infectious disease docs are among the leaders in denying Lyme diagnoses, so (having been there myself), I would strongly suggest you find a Lyme specialist who thinks more advanced thoughts about Lyme. It looks like you are between Philly and NYC, which is Lyme country for sure. If someone on this site doesn't send you a message with the name of a suggested Lyme specialist, you can email to
contact [at] ILADS [dot] org
and tell them where you are located. ILADS (International Lyme and Associated Diseases Society) is the main voluntary group for Lyme specialists and can refer you to an LLMD [which is not a formal designation but instead is patient slang for 'Lyme literate MD', meaning a doc who thinks broader thoughts about Lyme and will also consider whether you have other illnesses (co-infections) that the Lyme ticks also carry about half the time.
A nonLLMD would be likely to treat you for a couple of weeks of doxycycline, but as long you have been ill, that is (acc. to ILADS) insufficient in an established case of Lyme, for reasons I won't bore you with here. A nonLLMD is also not likely to consider co-infections, including bartonella, babesiosis and ehrlichiosis, which need separate testing and treatment if they are present.
Be sure to get and KEEP you own set of test results for all work you have done, because they could be useful going forward -- Lyme treatment takes time, and there are twists and turns in the road -- others have posted here about finding out they have an additional co-infection that didn't show itself until well into treatment.
Bottom line: I would DEFINITELY find a Lyme specialist. It took me 20 docs to find out there was such a thing, and without an LLMD, I would not have been treated and well.
Let us know if we can help further, and let us know how you do! This is progress -- !
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