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  • Finally got my Igenex results.

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    Old 08-07-2007, 01:20 PM   #1
    Erin524
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    Finally got my Igenex results.

    After harrassing my doctor's office for several days trying to find out if they got my results, they're finally in...and here they are.

    This is what the IgG said.

    18 kDa -
    22 kDa -
    **23-25 kDa -
    28 kDa -
    30 kDa -
    **31 kDa IND
    **34 kDa -
    **39 kDa
    **41 kDa +
    45 kDa -
    58 kDa -
    66 kDa -
    73 kDa -
    **83-93 kDa -

    And here's the IgM

    18 kDa -
    22 kDa -
    **23-25 -
    28 kDa -
    30 kDa -
    **31 kDa IND
    **34 kDa IND

    **39 kDa -
    **41 kDa IND
    45 kDa -
    58 kDa -
    66 kDa -
    73 kDa -
    **83-93 kDa -

    Both tests say that they're Igenex AND CDC negative. On the first page of the report, under "interpretation of antibody titers", they've circled 1:40 Indeterminate

    On my first Western Blot that I had done in June at the local MS Clinic, that WB showed that I had 2 bands present (41 and 23 kDa) on the IgG, and that I had no bands showing on the IgM. Which is interesting... 41 is still showing positive on the latest IgG...and now I've got 3 indeterminates on the IgM.

    Should I still be concerned about Lyme?

     
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    Old 08-07-2007, 01:49 PM   #2
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    Re: Finally got my Igenex results.

    Hi Erin.
    Below is the breakdown of the Western Blot bands:

    9 cross-reactive for Borrellia
    12 specific for Bb
    18 unknown
    20 cross-reactive for Borrellia
    21 unknown
    22 specific for Bb, probably really the 23/25 band
    23-25 outer surface protein C (OspC), specific for Bb
    28 unknown
    30 unknown; probably an outer surface protein; common in European and
    one California strain
    31 outer surface protein A (OspA), specific for Bb
    34 outer surface protein B (OspB); specific for Bb
    35 specific for Bb
    37 specific for Bb
    38 cross-reactive for Bb
    39 is a major protein of Bb flagellin; specific for Bb
    41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
    45 cross-reactive for all Borellia (sometimes people with Lyme who have
    this band positive also have the co-infection Ehrlichiosis)
    50 cross-reactive for all Borrellia
    55 cross-reactive for all Borrellia
    57 cross-reactive for all Borrellia
    58 unknown but may be a heat-shock Bb protein
    60 cross reactive for all Borrellia
    66 cross-reactive for all Borrelia, common in all bacteria
    83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
    93 unknown, probably the same protein in band 83, just migrates differently in some patients

    Band 41 is usually the first to show, and yours are IND and positve. Bands
    31, 34, and 39 are Lyme specific bands and yours are IND. Band 23-25 which you had positive before is a Lyme specific band.

    I recommend that you see a Lyme doctor and be tested for all the co-infections.

     
    Old 08-07-2007, 02:13 PM   #3
    Erin524
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    Re: Finally got my Igenex results.

    Thanks, but finding a Lyme knowledgable doctor is easier said than done. You would think in a city as large as Omaha (nearly half a million people) that there would be someone here that knows something about Lyme disease.

    I saw two infectious disease doctors about 3 or 4 weeks ago, and they were both total putz's (expected them to be) All they did was talk down to me because I'm an "emotional female, and possibly a hypochondriac". They told me in their extremely thick Farsi accents (and in very bad English) that I dont have Lyme and that they think I need a Hepatitis B vaccine (what? huh? WHY?!?)

    It just ticks me off to have someone treat me like I'm nuts and give me the impression that they're talking down to me only because I'm female.

    I'm going to see if my regular doctor can either find me someone who is more lyme knowledgable than those ID docs. At least he's trying to help me some. Altho, his nurse was sort of a moron this morning. She said because it said indeterminate, that that meant it was negative. (ummm...noooo, it means that they cant determine which it is yet) I wasnt that great of a student in school, but even I can tell that indeterminate doesnt mean yes or no, it means maybe

    Last edited by Erin524; 08-07-2007 at 02:14 PM. Reason: because I didnt proofread very well, and apparently cant spell easy words

     
    Old 08-07-2007, 02:30 PM   #4
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    Re: Finally got my Igenex results.

    My first 2 Lyme tests only showed 41Dka as positive on the Western Blot - this was through the local hospital. A couple of months later I had an Igenex test and the IgM was positive - at this point the 41Dka had +++ meaning it was very strong. I eventually met CDC and State of New York guidelines.

    My reason for telling you this was that the 41Dka was the FIRST thing that showed up. No one at that point would believe that I had Lyme and because they didn't treat me for 6 months I now have permanent TMJ arthritis which causes me constant pain.

    I think you should make sure you are re-tested through Igenex again - however don't let it go as long as mine did. Hope this helps!!

    Good luck.


     
    Old 08-07-2007, 02:32 PM   #5
    MichiganLymie
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    Re: Finally got my Igenex results.

    p.s. - I sympathize with you on Drs. condescending attitudes. I was told I was just "menopausal"!! I would tell them "yes - that is true BUT WHAT does that have to do with my having Lyme!" I was so incredibly frustrated!!

    Again good luck.

     
    Old 08-07-2007, 02:33 PM   #6
    Erin524
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    Re: Finally got my Igenex results.

    Quote:
    Originally Posted by MichiganLymie View Post
    My first 2 Lyme tests only showed 41Dka as positive on the Western Blot - this was through the local hospital. A couple of months later I had an Igenex test and the IgM was positive - at this point the 41Dka had +++ meaning it was very strong. I eventually met CDC and State of New York guidelines.

    My reason for telling you this was that the 41Dka was the FIRST thing that showed up. No one at that point would believe that I had Lyme and because they didn't treat me for 6 months I now have permanent TMJ arthritis which causes me constant pain.

    I think you should make sure you are re-tested through Igenex again - however don't let it go as long as mine did. Hope this helps!!

    Good luck.

    Yeah, I think I'm going to have to pony up another $250 (or more) for another test. Maybe if I have them test for all the co-infections at the same time? I'm going to ask my regular doctor if he'd do another blood draw in a month or two.

     
    Old 08-07-2007, 02:39 PM   #7
    Erin524
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    Re: Finally got my Igenex results.

    Quote:
    Originally Posted by MichiganLymie View Post
    p.s. - I sympathize with you on Drs. condescending attitudes. I was told I was just "menopausal"!! I would tell them "yes - that is true BUT WHAT does that have to do with my having Lyme!" I was so incredibly frustrated!!

    Again good luck.

    They inferred that too when I saw the putzy ID docs. I'm only 38yrs old...I havent been showing any signs of be pre-menopausal.

    Why is it that doctors (especially MALE doctors, and pretty much all men) always want to blame everything on hormones and female stuff??? It seems like anytime a woman is a bit...witchy, men always want to blame it on PMS and periods. I absolutely hate it when I'm in a bad mood and someone makes the comment "oh...it must be that time of the month... Especially when it's not even that time of the month.

     
    Old 08-08-2007, 08:08 AM   #8
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    Re: Finally got my Igenex results.

    Quote:
    Originally Posted by Erin524 View Post
    They inferred that too when I saw the putzy ID docs. I'm only 38yrs old...I havent been showing any signs of be pre-menopausal.

    Why is it that doctors (especially MALE doctors, and pretty much all men) always want to blame everything on hormones and female stuff??? It seems like anytime a woman is a bit...witchy, men always want to blame it on PMS and periods. I absolutely hate it when I'm in a bad mood and someone makes the comment "oh...it must be that time of the month... Especially when it's not even that time of the month.
    Hi Erin;

    I can relate/understand your frustration. I've been sick with numerous illnesses for over forty years, and no one had ever even mentioned the possibility of Lyme Disease. Then just a few weeks ago my doctor's assistance asked me if I had ever considered the possibility that I might have Lyme Disease. She ordered the Western Blot tests for me, and the results of the IGM showed three +/Positives, and the following is what the IGG showed.

    IGENEX-IGG-RESULT POSITIVE
    CDC/NYS-RESULT POSITIVE
    18 kDa +
    22kDa -
    **23-25 kDa IND
    28 kDa -
    30 kDa +
    **31 kDa +
    **31 kDa +
    **34 kDa +
    **39 kDa +
    **41 kDa ++++
    45 kDa +
    58 kDa +
    66 kDa +
    73 kDa -
    **83-93 kDa IND

    To add confusion to confusion, my Dr. said he hasn't had much luck treating Lyme patients, and therefore he thinks there are a lot of false-positives, so he ordered another blood test to "confirm" the above blood test

    I'm a total novice at this; but from what I've been told by a few fellow Lyme patients, and from what I've read on the internet, my test results (already) confirm the diagnosis of Lyme Disease. It appears that there is far more likelyhood of false-negatives than false-positives.

    Fortunately, just recently my husband saw a program on TV with a Dr. Fein (I think that's how it's spelled). Anyway, after seeing that program, and seeing my test results, my husband said he is totally convinced that I have Lyme Disease. He said that we are in this together, and we will do whatever it takes to get me better. Hmm, maybe that's why we have been married nearly 28 years.

    As to the "that time of the month" syndrome---from what I've been reading, some of us do/did sort of have that time of the month all month long---cuz the Lyme Disease messes with our hormones. I experienced varrying degrees of all month long PMS for years--until I totally changed my diet in my mid thirties.

    The diet change stopped the major PMS symptoms; but even now that I actually am post-menopausal, my GYN can't get my hormones straightened out. Who knows, (Maybe) after I get started on the Lyme Disease protocol they will eventually straighten out on their own.

    Blessings;
    Ava

    Last edited by Avalou; 08-08-2007 at 08:21 AM.

     
    Old 08-08-2007, 11:25 AM   #9
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    Re: Finally got my Igenex results.

    Hi Ava. As you can see from the breakdown of the Western Blot, your results are positive.

    It floors me why some doctors even run the tests! If it is negative, the patient is told you definitely do not have it. If it is positive, they are told it is a false positive! The truth is that no Lyme test is completely reliable. Some people who have Lyme do not test positive. I believe there are false negatives, not false positives.

    You definitely need to be treated and tested for all the co-infections. In my opinin, the most important thing you can do is be evaluated by a Lyme knowledgeable doctor.

    PMS can definitey make Lyme syptoms worse and vice-versa. Many women feel worse before and during their cycle.

     
    Old 08-08-2007, 02:01 PM   #10
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    Re: Finally got my Igenex results.

    Well, I'm fuming mad now (it must be my PMS)! I can't believe (actually I can) that those doctor's would have the nerve to say such things. False positives??!!!! Are they mad?!!!!

    My Lyme's actually causes me all kinds of female troubles. I used to be like a clock when it came to my cycle. Then, after my wonderful Lyme infection, I stopped having periods, testosterone levels were high (hey at least I can sing tenor now...just kidding), hair loss, chronic yeast infections and LOTS of ovarian cycts. I'm on yasmin right now b/c it has anti androgen properties to it....plus, it keeps me having periods. My gyno diagnosed me w/ PCOS (Polycycstic Ovarian Syndrome). I know now it's all related to Lyme's.

    Hang in there and I hope you can find a doctor who will listen.

     
    Old 08-08-2007, 08:53 PM   #11
    Erin524
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    Re: Finally got my Igenex results.

    I think some doctors are arrogant little...(cant say it without being censored with little * *'s)

    They just cant stand being proven wrong by some blood tests that they have to say that the tests are false positives...something that probably could be considered willful malpractice.

    I would love to find out the exact reason why there is such a controversy about Lyme testing and diagnosing. There has to be a reason why there is such an argument between the doctors that believe in chronic Lyme and the doctors who refuse to believe any of the information that the research is showing us.

    As for whatever's going on with me, if it's Lyme or MS, I havent noticed much interfering with the inner workings of my girl parts, other than scaring the heebie jeebies out of me whenever it's late a day or two, or surprising me by being early by a day or two.

    I have noticed I've got some seriously painful arthritic pain in my big toes...something that the ID doctors that I saw last month just ignored. They said that I'd HAVE to have arthritis in my knees...that the Lyme arthritis doesnt affect your toe joints. Well, gee, sorry my knees arent in enough pain for them to believe me. I DO have pain in my knees, it just doesnt make my skin in that area turn bright red (ID doc told me my knees would be bright red and painful) So, even tho I have pain in my knees, they wouldnt take me seriously...and looked at me like I was nuts because I have more pain in my big toes rather than my knees.

    Have some of these doctors never heard of atypical cases of Lyme?

     
    Old 08-09-2007, 06:38 AM   #12
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    Re: Finally got my Igenex results.

    I think most dr's won't touch a patient w/ Lyme's Disease w/ a 10 foot pole. There are so many "witch hunts" for doctors who treat Lyme's properly. I think it has to do w/ the insurance companies not wanting to pay for IV abx and also the government not wanting to admit the severity of this epidemic. I'm hearing more and more people being diagnosed w/ Lyme...i.e. the President, and my little cousin had a bullseye rash a few weeks ago...luckily my cousin's doctor treated him immediately w/ abx.

    I have pain in my joints, muscles and nerves. The only joints that have swollen up red are my entire hands. Other than that, I haven't had any other "red painful swelling". I have a positive Western Blot as well.

    Best to put as much distance between you and those flukey docs as soon as possible. Take your test results and go to a LLMD.

     
    Old 08-09-2007, 01:13 PM   #13
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    Re: Finally got my Igenex results.

    Hi Ticker;

    Thank you again for the confirmation. Your comments in this thread, and also the other thread, are (part) of the reason that I am going to the specialist in the Tri-Cities--no matter what the results of the new test might be.

    Since he heard a program on TV by a Dr. Fein (sp), my husband is totally on board, and he is going to the consultation in the Tri-Cities with me, and if we aren't satisfied with what we hear, we will go to one of the ones in California. We are praying that Dr. Ames knows his stuff though, so we don't have to go clear to California.

    I also have already ordered the book you reccommended. It will be here around the 19th of this month. I had ordered another book when I was first tested, before I came to this forum, that I have received already. It's called "The Top 10 Lyme Disease Treatments". Have you read it? From what I've read so far, it seems to have some pretty good advice in it.

    Again, thank you very much for your input. I'm sure there are, and will be, many people that you will help.

    God Bless You;
    Ava

    Quote:
    Originally Posted by ticker View Post
    Hi Ava. As you can see from the breakdown of the Western Blot, your results are positive.

    It floors me why some doctors even run the tests! If it is negative, the patient is told you definitely do not have it. If it is positive, they are told it is a false positive! The truth is that no Lyme test is completely reliable. Some people who have Lyme do not test positive. I believe there are false negatives, not false positives.

    You definitely need to be treated and tested for all the co-infections. In my opinin, the most important thing you can do is be evaluated by a Lyme knowledgeable doctor.

    PMS can definitey make Lyme syptoms worse and vice-versa. Many women feel worse before and during their cycle.

     
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