Aa
How to read the IgeneX test?
How do you read them and what bands are the lyme bands. ? I have a ++ a + and a IND on my IGM but the IGG only has an IND and a +.
The test says I need to have other testing and see a specialist. It says certainly I HAVE BEEN EXPOSED to lyme, but doesn't confirm or deny that I have it. My PCP says I have been exposed to it for certain. But the test is indeterminate.
The doctor I was able to see only once, thought I had Babessia due to my neurological issues. But can I have that if I don't have lyme?
The test says I need to have other testing and see a specialist. It says certainly I HAVE BEEN EXPOSED to lyme, but doesn't confirm or deny that I have it. My PCP says I have been exposed to it for certain. But the test is indeterminate.
The doctor I was able to see only once, thought I had Babessia due to my neurological issues. But can I have that if I don't have lyme?
I had the western blot or the "basic test" but it was done through Igenex. Is that the test you are talking about with the DNA??
My doctor doesn't know what to do. She called Igenex and they told her I need to see a lyme specialist but she can't find one for me either so I will probably end up at the basic infectious disease clinic down state who only recognize CDC and gives 2 - 3 week of doxy, and then tells you you have to live with 'post lyme syndrome' forever. But they will probably not accept my test because you MUST have a documented rash, and my test was not CDC positive it was Indeterminate I think even by Igenex because my only +'s were on cross reactive bands. My lime specific bands were all IND on IGG and IGM
The LLMD I saw down state still won't call me back since I told them i have no money :'(
Also, why didn't my Igenex test go below band 18!?!? Mine doesn't have 12 or 9 or any of that!
My doctor doesn't know what to do. She called Igenex and they told her I need to see a lyme specialist but she can't find one for me either so I will probably end up at the basic infectious disease clinic down state who only recognize CDC and gives 2 - 3 week of doxy, and then tells you you have to live with 'post lyme syndrome' forever. But they will probably not accept my test because you MUST have a documented rash, and my test was not CDC positive it was Indeterminate I think even by Igenex because my only +'s were on cross reactive bands. My lime specific bands were all IND on IGG and IGM
The LLMD I saw down state still won't call me back since I told them i have no money :'(
Also, why didn't my Igenex test go below band 18!?!? Mine doesn't have 12 or 9 or any of that!
The splendid site 'TruthAboutLymeDisease' lists the meaning of every band (a kind of marker) that occurs in Lyme disease. They are all below. It may seem overwhelming, but this lays out each of bands and what they mean. Compare the list below to your test results.
Note: Borrelia burgdorferi is the scientific name for the Lyme bacteria. It is sometimes written 'B.burgdorferi' and also sometimes abbreviated just to 'Bb'. (Scientist Willy Burgdorf was important in the discovery and understanding of Lyme disease, so the Lyme bacteria are named after him. Thank you, Willy!)
The term 'bands' refers to indicators on the Lyme test results -- when certain bands are showing positive, then the diagnosis of Lyme is confirmed.
I have edited this to be less wordy and perhaps easier to follow -- my comments are in [square brackets] below:
==============================
[Summary:]
"There are nine known Bb-specific [meaning ONLY Lyme has these bands] Western Blot antibodies [made by the body to fight the Lyme bacteria]:
18 23 30 31 34 37 39 83 and 93.
Only one of these Bb ... specific bands is needed to confirm that there is serological [blood] evidence of exposure to the [Bb bacteria] and can confirm a clinical diagnosis of Lyme disease [made by a wise and experienced MD]. (More info pages 12 & 13 "Western Blot Made Easy": http://www.publichealthalert.org/pdfnew/2007_06.pdf
=====================================
Igenex Western Blot Break Down by band --
Your doctor compares this list to the results on your Western blot test results to say whether or not you have Lyme disease.
[Note: the list below is of the numbered 'bands' and their meanings -- ]
9 cross-reactive for Borrellia [might be Lyme, might not]
12 specific for Bb [only Lyme shows band 12]
18 highly specific to Lyme (Many LLMD's say if this band alone is positive, you have lyme) [this is counted as a positive Lyme indicator]
20 cross-reactive for Borrellia [might be Lyme, might not]
21 unknown
22 specific for Bb [only Lyme disease has a positive result on band 22], probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb [only Lyme disease has a positive result on bands 23-25]
28 unknown
30 unknown; probably an outer surface protein; common in European and one California strain - Has cross-reactivity with several different types of viruses [therefore not particularly helpful in making a diagnosis]
31 outer surface protein A (OspA), specific for Bb [meaning only Lyme bacteria have this protein] - Has cross-reactivity with several different types of viruses [which may confuse the issue a bit ... this is something I have not read much about]
34 outer surface protein B (OspB); specific for Bb [meaning ONLY Lyme will show a positive (+) result on this line]
35 specific for Bb [ONLY Lyme will show a positive (+) result on this line]
37 specific for Bb [ONLY Lyme will show a positive (+) result on this line]
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes [that is, spiral-shaped bacteria]; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas - see link above "Western Blot Made Easy" for more info). That is: Lyme is in the spirochete family, but there are other bacteria also in that family. Meaning: all Lyme bacteria are in the spirochete family, but not all spirochetes are Lyme.
45 cross-reactive for all Borellia [meaning it might be Lyme or a cousin of Lyme, but not sure]
50 cross-reactive for all Borrellia [meaning it could be any of the many bacteria in the Borrelia family -- so it could be Lyme, but might not be]
55 cross-reactive for all Borrellia [ditto]
57 cross-reactive for all Borrellia [ditto]
58 unknown but may be a heat-shock Bb protein [ditto]
60 cross reactive for all Borrellia [meaning it could be any of the many bacteria in the Borrelia family -- so it could be Lyme, but might not be]
66 cross-reactive for all Borrelia, common in all bacteria [same as line 60 above, meaning it could be any of the many bacteria in the world -- so it could be Lyme, but might not be]
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane [ONLY Lyme will show a positive (+) result on this line, so it is a clear indicator of Lyme]
93 unknown, probably the same protein in band 83, just migrates differently in some patients [very similar to band 83 above, but isn't entirely clear]
===================================
Here is some additional text from the same source:
-- 'An IgM positive test result means more recent & likely currently active [Lyme] infection.
-- IgG positive means previous exposure to the bacteria or older infection of Lyme. If no symptoms are present with IgG positive, it may mean an "inactive" LD infection.
No matter the results, please remember LD is a clinical diagnosis, [which means that] you can have a negative test and still have Lyme Disease and the co-infections, even through the best labs.
If you have symptoms, it is imperative to see a Lyme literate Md so that you can be properly diagnosed and treated.
If your test reads "CDC negative please read the following link (both pages) at it explains how this occurs. http://www.ilads.org/lyme_disease/about_lyme.html"
Note: Borrelia burgdorferi is the scientific name for the Lyme bacteria. It is sometimes written 'B.burgdorferi' and also sometimes abbreviated just to 'Bb'. (Scientist Willy Burgdorf was important in the discovery and understanding of Lyme disease, so the Lyme bacteria are named after him. Thank you, Willy!)
The term 'bands' refers to indicators on the Lyme test results -- when certain bands are showing positive, then the diagnosis of Lyme is confirmed.
I have edited this to be less wordy and perhaps easier to follow -- my comments are in [square brackets] below:
==============================
[Summary:]
"There are nine known Bb-specific [meaning ONLY Lyme has these bands] Western Blot antibodies [made by the body to fight the Lyme bacteria]:
18 23 30 31 34 37 39 83 and 93.
Only one of these Bb ... specific bands is needed to confirm that there is serological [blood] evidence of exposure to the [Bb bacteria] and can confirm a clinical diagnosis of Lyme disease [made by a wise and experienced MD]. (More info pages 12 & 13 "Western Blot Made Easy": http://www.publichealthalert.org/pdfnew/2007_06.pdf
=====================================
Igenex Western Blot Break Down by band --
Your doctor compares this list to the results on your Western blot test results to say whether or not you have Lyme disease.
[Note: the list below is of the numbered 'bands' and their meanings -- ]
9 cross-reactive for Borrellia [might be Lyme, might not]
12 specific for Bb [only Lyme shows band 12]
18 highly specific to Lyme (Many LLMD's say if this band alone is positive, you have lyme) [this is counted as a positive Lyme indicator]
20 cross-reactive for Borrellia [might be Lyme, might not]
21 unknown
22 specific for Bb [only Lyme disease has a positive result on band 22], probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb [only Lyme disease has a positive result on bands 23-25]
28 unknown
30 unknown; probably an outer surface protein; common in European and one California strain - Has cross-reactivity with several different types of viruses [therefore not particularly helpful in making a diagnosis]
31 outer surface protein A (OspA), specific for Bb [meaning only Lyme bacteria have this protein] - Has cross-reactivity with several different types of viruses [which may confuse the issue a bit ... this is something I have not read much about]
34 outer surface protein B (OspB); specific for Bb [meaning ONLY Lyme will show a positive (+) result on this line]
35 specific for Bb [ONLY Lyme will show a positive (+) result on this line]
37 specific for Bb [ONLY Lyme will show a positive (+) result on this line]
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes [that is, spiral-shaped bacteria]; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas - see link above "Western Blot Made Easy" for more info). That is: Lyme is in the spirochete family, but there are other bacteria also in that family. Meaning: all Lyme bacteria are in the spirochete family, but not all spirochetes are Lyme.
45 cross-reactive for all Borellia [meaning it might be Lyme or a cousin of Lyme, but not sure]
50 cross-reactive for all Borrellia [meaning it could be any of the many bacteria in the Borrelia family -- so it could be Lyme, but might not be]
55 cross-reactive for all Borrellia [ditto]
57 cross-reactive for all Borrellia [ditto]
58 unknown but may be a heat-shock Bb protein [ditto]
60 cross reactive for all Borrellia [meaning it could be any of the many bacteria in the Borrelia family -- so it could be Lyme, but might not be]
66 cross-reactive for all Borrelia, common in all bacteria [same as line 60 above, meaning it could be any of the many bacteria in the world -- so it could be Lyme, but might not be]
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane [ONLY Lyme will show a positive (+) result on this line, so it is a clear indicator of Lyme]
93 unknown, probably the same protein in band 83, just migrates differently in some patients [very similar to band 83 above, but isn't entirely clear]
===================================
Here is some additional text from the same source:
-- 'An IgM positive test result means more recent & likely currently active [Lyme] infection.
-- IgG positive means previous exposure to the bacteria or older infection of Lyme. If no symptoms are present with IgG positive, it may mean an "inactive" LD infection.
No matter the results, please remember LD is a clinical diagnosis, [which means that] you can have a negative test and still have Lyme Disease and the co-infections, even through the best labs.
If you have symptoms, it is imperative to see a Lyme literate Md so that you can be properly diagnosed and treated.
If your test reads "CDC negative please read the following link (both pages) at it explains how this occurs. http://www.ilads.org/lyme_disease/about_lyme.html"
1 Comments
[Whew. Got a headache yet?]
A lot of this won't make sense until you sit down and compare your own test results against the numbered items above.
And one more very important thing: The tests discussed above have been used and relied on for years, so the docs are familiar with them.
*However*, it is now known that these tests are not entirely accurate and can miss a Lyme diagnosis (meaning you have Lyme but the test says you don't). Why is the test not entirely accurate? From what I read, the Lyme bacteria have the ability to suppress or hide their presence from the Western blot tests, so the test result may say you don't have Lyme, but really you do.
A more accurate test is relatively new: IGeneX Labs in California created a new kind of test more at least a decade ago which is not interfered with by the Lyme bacteria or the immune system, so the IGeneX test is more reliable.
In summary: the Western blot test for Lyme disease is accurate when the patient's test result is positive, but if the test is negative, it may be wrong and you could really have Lyme. On the other hand, the IGeneX test is more accurate because it does not rely on the human immune system to determine to detect the Lyme bacteria, but instead looks for the Lyme DNA, which cannot be hidden.
This is not to say that the Western blot test is useless: my MD used both W.blot and IGeneX tests -- more data is often good data, to check on the validity of the results. In my case, I was positive on both tests, but not everyone is.
Sorry this is so complicated, but it's important to me to know I am getting the best chance at an accurate diagnosis. MDs who are Lyme specialists understand this test dilemma, but other docs often motor along using only the older Western blot and ELISA tests.
I am not trying to badmouth your doc -- there is a big chunk of the medical community that still follows the same testing approach it sounds like your current doc does. Let us know how we can help.
Lyme can be beaten! I had Lyme and babesiosis at the same time, and in less than a year of treatment (that's a normal length of time), I was well and getting better, tho still a bit tired for a while. In the almost ten years since then, I am fine, with *no* problems. I wish the same for you!
Let us know how we can help.
A lot of this won't make sense until you sit down and compare your own test results against the numbered items above.
And one more very important thing: The tests discussed above have been used and relied on for years, so the docs are familiar with them.
*However*, it is now known that these tests are not entirely accurate and can miss a Lyme diagnosis (meaning you have Lyme but the test says you don't). Why is the test not entirely accurate? From what I read, the Lyme bacteria have the ability to suppress or hide their presence from the Western blot tests, so the test result may say you don't have Lyme, but really you do.
A more accurate test is relatively new: IGeneX Labs in California created a new kind of test more at least a decade ago which is not interfered with by the Lyme bacteria or the immune system, so the IGeneX test is more reliable.
In summary: the Western blot test for Lyme disease is accurate when the patient's test result is positive, but if the test is negative, it may be wrong and you could really have Lyme. On the other hand, the IGeneX test is more accurate because it does not rely on the human immune system to determine to detect the Lyme bacteria, but instead looks for the Lyme DNA, which cannot be hidden.
This is not to say that the Western blot test is useless: my MD used both W.blot and IGeneX tests -- more data is often good data, to check on the validity of the results. In my case, I was positive on both tests, but not everyone is.
Sorry this is so complicated, but it's important to me to know I am getting the best chance at an accurate diagnosis. MDs who are Lyme specialists understand this test dilemma, but other docs often motor along using only the older Western blot and ELISA tests.
I am not trying to badmouth your doc -- there is a big chunk of the medical community that still follows the same testing approach it sounds like your current doc does. Let us know how we can help.
Lyme can be beaten! I had Lyme and babesiosis at the same time, and in less than a year of treatment (that's a normal length of time), I was well and getting better, tho still a bit tired for a while. In the almost ten years since then, I am fine, with *no* problems. I wish the same for you!
Let us know how we can help.
Thank you
I forgot to include my numbers. 41 is a + on both 31 is a ++ on IGM, and 34 is IND on IGM. On IGG 39 is IND.
My test did not go below 18.
It says 31 and 41 don't count and need separate testing. Both my IND were 34 and 39.
There is a thing "<40" which I think means my test is negative? If so then how does my doctor figure I was certainly exposed?
My papers also come with a bunch of hand writing by different people. I don't know who wrote what. I think my doctor must have called IGeneX I see a note on it that asks where to refer to "ruhmatologist, infectious disease specialist, mayo?" And then another note "Follow up with lyme specialist" but good luck, I can't afford any so I assume I will end up going to the disease docs down state and I'm sure they will scoff at my IND testing.
The doc i saw didn't want to test me for Babesia because he thinks the testing for it isn't accurate and that he would treat it with a anti-parasitic anyway to be safe. Does that sound familiar?
I forgot to include my numbers. 41 is a + on both 31 is a ++ on IGM, and 34 is IND on IGM. On IGG 39 is IND.
My test did not go below 18.
It says 31 and 41 don't count and need separate testing. Both my IND were 34 and 39.
There is a thing "<40" which I think means my test is negative? If so then how does my doctor figure I was certainly exposed?
My papers also come with a bunch of hand writing by different people. I don't know who wrote what. I think my doctor must have called IGeneX I see a note on it that asks where to refer to "ruhmatologist, infectious disease specialist, mayo?" And then another note "Follow up with lyme specialist" but good luck, I can't afford any so I assume I will end up going to the disease docs down state and I'm sure they will scoff at my IND testing.
The doc i saw didn't want to test me for Babesia because he thinks the testing for it isn't accurate and that he would treat it with a anti-parasitic anyway to be safe. Does that sound familiar?
Each band on the IGeneX test that is positive brings a clue that you may well have Lyme. The bands are numbered, and they vary in how strong an indicator that you have Lyme, according to how many '+' signs there are for each band, and depending on which bands they are. The more + signs reporting on a band mean it is a stronger indicator, and from those patterns of infection, a wise Lyme doc can determine whether you have Lyme disease. For example, here is my reading about the bands you have shown positive for (but remember, I'm not a doc ... but I had Lyme and another infection, so I did a bunch of reading, fwiw):
Band 9 -- if this band has a positive mark (+), then you might have Lyme, or might have something else
Band 12 -- specific for Lyme, meaning that if this band has one or more '+' marks, then you have Lyme
Band 18 -- highly specific to Lyme, meaning that if you have a + on this band, you definitely have Lyme
Bands 22, 34, 35, 37, and 39: these bands are also highly specific to Lyme
-----------------------------------------
That's a lot of positive results above, I would think. Ask a good Lyme doc.
In addition to the 'Lyme' bands, a good Lyme doc will know from your history and symptoms what other infections the 'Lyme' ticks may have brought ... for example, I had babesiosis along with Lyme. This is important, because these co-infections often do not respond to the same antibiotics that Lyme does, and different meds are needed to kill the co-infections.
---------------------------------------------
You say, "I have a ++ a + and a IND on my IGM but the IGG only has an IND and a +."
'IND' means 'indeterminate', meaning a 'maybe' -- but 'maybe' is still something, and wise docs often assume that 'maybe' should be counted as a positive result, because there is no other explanation for the IND. A little bit infected is still infected, and it needs proper treatment.
--------------------------------------------
You say, "The test says I need to have other testing and see a specialist. It says certainly I HAVE BEEN EXPOSED to lyme, but doesn't confirm or deny that I have it." The test says to 'see a specialist' because a lab CANNOT make a diagnosis: that is for an MD to do.
You say, "My PCP says I have been exposed to it for certain. But the test is indeterminate." An indeterminate test means the result is 'maybe' you are infected. For diseases that do not go away without medication, an indeterminate [or 'maybe'] test needs treatment. A little bit infected is still infected.
You say, "The doctor I was able to see only once, thought I had Babessia due to my neurological issues." He might be right. There is a separate test for babesia to see if you have it or not. The antibiotics used against Lyme and against Babesia are entirely different, so different testing is needed to know exactly what you are infected with.
You say, "But can I have [babesiosis] if I don't have lyme?" Yes. Absolutely. I had both Lyme and babesiosis: they need different tests and different meds.
Having had Lyme and babesiosis myself, I would not hesitate to be treated with the proper antibiotics for the necessary period of time. I am now 7+ years since treatment, and I am quite healthy, with no signs at all of Lyme or babesia.
The information above also states at the end: "No matter the [test] results, please remember [that Lyme disease] is a clinical diagnosis, you can have a negative test and still have Lyme Disease and the co-infections [like babesiosis], even through the best labs. If you have symptoms, you need treatment." [Quotes are courtesy of TruthAboutLymeDisease dot com.]
Best wishes, and let us know how you do, okay? You go!
Band 9 -- if this band has a positive mark (+), then you might have Lyme, or might have something else
Band 12 -- specific for Lyme, meaning that if this band has one or more '+' marks, then you have Lyme
Band 18 -- highly specific to Lyme, meaning that if you have a + on this band, you definitely have Lyme
Bands 22, 34, 35, 37, and 39: these bands are also highly specific to Lyme
-----------------------------------------
That's a lot of positive results above, I would think. Ask a good Lyme doc.
In addition to the 'Lyme' bands, a good Lyme doc will know from your history and symptoms what other infections the 'Lyme' ticks may have brought ... for example, I had babesiosis along with Lyme. This is important, because these co-infections often do not respond to the same antibiotics that Lyme does, and different meds are needed to kill the co-infections.
---------------------------------------------
You say, "I have a ++ a + and a IND on my IGM but the IGG only has an IND and a +."
'IND' means 'indeterminate', meaning a 'maybe' -- but 'maybe' is still something, and wise docs often assume that 'maybe' should be counted as a positive result, because there is no other explanation for the IND. A little bit infected is still infected, and it needs proper treatment.
--------------------------------------------
You say, "The test says I need to have other testing and see a specialist. It says certainly I HAVE BEEN EXPOSED to lyme, but doesn't confirm or deny that I have it." The test says to 'see a specialist' because a lab CANNOT make a diagnosis: that is for an MD to do.
You say, "My PCP says I have been exposed to it for certain. But the test is indeterminate." An indeterminate test means the result is 'maybe' you are infected. For diseases that do not go away without medication, an indeterminate [or 'maybe'] test needs treatment. A little bit infected is still infected.
You say, "The doctor I was able to see only once, thought I had Babessia due to my neurological issues." He might be right. There is a separate test for babesia to see if you have it or not. The antibiotics used against Lyme and against Babesia are entirely different, so different testing is needed to know exactly what you are infected with.
You say, "But can I have [babesiosis] if I don't have lyme?" Yes. Absolutely. I had both Lyme and babesiosis: they need different tests and different meds.
Having had Lyme and babesiosis myself, I would not hesitate to be treated with the proper antibiotics for the necessary period of time. I am now 7+ years since treatment, and I am quite healthy, with no signs at all of Lyme or babesia.
The information above also states at the end: "No matter the [test] results, please remember [that Lyme disease] is a clinical diagnosis, you can have a negative test and still have Lyme Disease and the co-infections [like babesiosis], even through the best labs. If you have symptoms, you need treatment." [Quotes are courtesy of TruthAboutLymeDisease dot com.]
Best wishes, and let us know how you do, okay? You go!
1 Comments
... and PS:
You also say above: "My PCP says I have been exposed to it for certain. But the test is indeterminate." Indeterminate [IND] is NOT a negative: therefore Lyme docs treat it as a positive. Research scientists may call an IND as negative, but that is likely because the researchers want their data squeaky clean with no chance of being wrong. However when patients are involved, a good MD will lean the other way: an 'indeterminate' is usually treated as a YES for Lyme.
You also say: "The doctor I was able to see only once, thought I had Babessia due to my neurological issues. But can I have that if I don't have lyme?" Yes, those are two entirely different diseases, but are carried by the same ticks. I had Lyme AND babesia at the same time: first babesia was treated, and then that was done, then Lyme was treated -- and I remain healthy without either infection some years later. I say: go for it!
You also say above: "My PCP says I have been exposed to it for certain. But the test is indeterminate." Indeterminate [IND] is NOT a negative: therefore Lyme docs treat it as a positive. Research scientists may call an IND as negative, but that is likely because the researchers want their data squeaky clean with no chance of being wrong. However when patients are involved, a good MD will lean the other way: an 'indeterminate' is usually treated as a YES for Lyme.
You also say: "The doctor I was able to see only once, thought I had Babessia due to my neurological issues. But can I have that if I don't have lyme?" Yes, those are two entirely different diseases, but are carried by the same ticks. I had Lyme AND babesia at the same time: first babesia was treated, and then that was done, then Lyme was treated -- and I remain healthy without either infection some years later. I say: go for it!
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