Update: Igenex Western Blot results (new results in)

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by erica741, Apr 2, 2008.

  1. erica741

    erica741 New Member

    4/20/08: PLEASE SEE UPDATED TEST RESULTS BELOW


    Original post:

    I just got my Igenex Western Blot results, and I'm a bit concerned. They read:

    Lyme IgM Western Blot
    Igenex Igm result: Positive
    CDC/NYS result: Negative

    Lyme IgG Western Blot
    Igenex IgG result: Negative
    CDC/NYS result: Negative

    Here is what is listed under the "positive" Igenex IGM result:

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


    Does this mean I defintely or just maybe have lyme? I think I should go ahead and see a lyme specialist?

    I'd appreciate any input. Thanks!

    Erica

    PS. I also posted on the Lyme board, so sorry if anyone had to read this twice.

    [This Message was Edited on 04/21/2008]
  2. bunnyfluff

    bunnyfluff Member

    You are officially in the *Die Lyme Die* Club!!

    Here is the info on reading the test:



    I know that many of you have tested negative on the standard Quest Lyme tests, and don't see the point in spending the extra $$ on Igenex, or understand how the 2 tests vary. I have recently had tthem done, and my LLMD was kind enuf to explain in depth the tests, as well as the results. Here is what I have learned:

    Lyme IgG Western Blot shows and old, or chronic infection. IgM shows new infection.

    Quest testing leaves out the 2 most specific bands: #31 & #34. These bands are SO SPECIFIC to Lyme, the first human Lyme vaccine was made from #31, and the 2nd from #34!! These very important bands are NOT REPORTED in standard commercial Lyme tests!

    Laboratories that use FDA approved kits are RESRICTED from reporting all of these bands, as they must abide by the rules of he manufacturer. These rules are set up in accordance wih the CDC's surveillance criteria, and inrease the risk of false negative resuls.

    The little ++ indicates the amount of reaction. Each + counts for 10% probability that you have Lyme. So, when you count your + signs, you can have 9, or 90%, and the CDC will give a neg. result because it has to be 100% for that to pass their "standard" for "surveillance".

    Here are the bands explained:



    If the patient is highly symptomatic of Lyme, there is actually no point in doing the ELISA or EIA serum tests, as they do not have the sensitivity or specificity of the Western Blot that is needed to have a prayer of detecting Borrelia burgdorferi (Bb), the organism that causes Lyme disease.


    Contrary to what many insurance companies believe, the IgG and IgM Western Blot for Lyme disease are not the same test. Some companies will deny one and pay the other, claiming they are the same test or duplicative of one another. IgG and IgM are two completely different antibodies.

    IgM antibodies are the first antibodies to be produced in the body in response to an infection, and is produced in great quantity. IgM antibodies are large, up to six times larger than the IgG antibodies. IgM antibodies, when present in high numbers, represent a new active infection or an existing infection that has become reactivated. Over time, the number of IgM antibodies will decline as the active infection is resolved.

    IgG antibodies are produced once an infection has been going on for a while, and may be present after the infection has been resolved. Generally speaking, the presence of IgG antibodies to an organism when accompanied by a negative IgM test for the same organism means that the person was exposed to that organism at one time and developed antibodies to it, but does not have a current active infection of that organism. When it comes to Borrelia burgdorferi (Bb), the organism responsible for Lyme disease, that is not necessarily the case.

    To recap, depending on the numbers,

    IgM is a sign of a current infection.
    IgG is a sign of a current infection, or of a past exposure to or past infection by the organism.
    Bb can hide in the brain and cerebral spinal fluid (CSF) and by altering its surface proteins, can remain invisible to the immune system for a long period of time. Once the immune system figures out what it is and starts making antibodies to it, it shifts is surface proteins once again, fooling the body into thinking the infection is over.

    Bb can also turn itself into undetectable cysts and various other forms (called L-forms) which also help it elude the immune system. If the immune system can't see it, the immune system can't make and, or only insufficient antibodies, which all contribute towards making the organism impossible to detect by any testing methodology, including WB. Thus, blood and urine tests for Bb can be negative, even if the patient is "challenged" by being given high dose injections of antibiotics to try to trigger a reaction from or partial die-off of Bb that will cause it to show up in the blood or urine.






    Band IgG
    IgM
    Band Definition

    18 kDa.#
    . p18 flagellin fragment
    22 kDa . . Immunogenic integral membrane lipoproteins. Cross-reactive with other spirochetes/bacteria. Depending on source, may be specific for Bb or cross-reactive. [Coleman]
    23-25 kDa @ # @ # OspC. 25 kDa is specific for Bb
    28 kDa .# . OspD, Oms28. Specific for Bb
    30 kDa # . OspA substrate binding protein
    31 kDa @ @ OspA
    34 kDa @ @ OspB. Specific for Bb
    37 kDa .. .. p37, FlaA gene product. Specific for Bb
    39 kDa @ # @ # BmpA. Specific for Bb
    41 kDa
    @ # @ # FlaB
    45 kDa .# . [Flisiak]; appears for HGE [Ravyn]
    58 kDa # . .
    66 kDa # . p66 Oms66 Hsp outer/integral membrane protein
    73 kDa ... ... .
    83 kDa .. .. p83 high molecular mass protein. Specific for Bb
    93 kDa @ # # an immunodominant protoplasmic cylinder antigen, associated with the flagellum. Specific for Bb

    Abbreviations:
    Bb Borrelia burgdorferi
    Bmp Bacterial membrane protein
    Fla Flagellin
    HGE Human granulocytic ehrlichiosis
    kDa kilodalton = molecular weight
    Oms Outer membrane-spanning
    Osp Outer surface proteins
    p Protein


    I hope this helps some of you understand your past testing.


    Please get to a LLMD ASAP! it will take awhile to feel "better" depending on how long you have been sick, but at least now you know who the enemy is!!

    All my best,
    Bunny
  3. Timaca

    Timaca New Member

    HI~

    My opinion is a bit different from those above. First, what bands (if any) did you test positive for on the IgG WB?

    How long have you been ill?

    Did you get the Ignenex confirmation test on band 30/31? (Meaning if you test positive on either of those bands they check to make sure it isn't because of a virus?)

    Have you been tested for viruses?

    Best,
    Timaca
  4. erica741

    erica741 New Member

    I'm not sure I understand all your questions, but I'll try.

    For my IgG results, there was only one positive band: "**41 kDa +"

    **31 kDa and **34 kDa were "IND". All the rest were negative.

    I have been ill since May 2006. I tested very high for EBV and HHV-6 (high enough in Feb 2007 that I was supposed to be in Montoya's trial). My titers dropped below the qualifying threshold when the trial started, but were still high. I did a Valctye treatment from July-Jan and am still seeing Dr. Montoya every 3 months.

    I "responded" to Valctye and even felt "recovered" at times during the treatment. I still am excessively tired most of the time, but Montoya and the consensus on this board seems to be to expect several months after Valctye to feel recovered.

    I decided to get the Igenex Western Blots just because there has has been so much discussion about lyme on this board and I wanted to rule out lyme as a contributor to my illness. However, from my Igenex results, it appears that lyme is likely an issue for me.

    I'm not sure what you mean by a confirmation test on bands 30/31. I do know that my EBV was unusually high when I got the Igenex test done, and I read on my Igenex lab results that EBV is a virus that can give false positives. Now you've really got me thinking....do you think I should get these Western Blots redone before I pursue seeing a lyme specialist?

    Lastly, I want to add that my only symptoms since getting ill have been fevers, fatigue, and brain fog. No pain or any other issues. My brain fog had cleared within the 1st year of my illness, but I started getting post-exertional fatigue about 2 years before I fell ill. Does this sound like lyme to you?

    Thanks so much for your input and throught-provoking questions!

    Erica
    [This Message was Edited on 04/02/2008]
  5. erica741

    erica741 New Member

    Wow, thanks for all the great detailed information. Very scientific, so unfortunately a lot went over my head :)

    Since my IgM is what is high and I have very little IgG, sounds like I have a relatively new active infection? I have been ill officially since May-June 2006, but started getting post-exertional malaise 2 years before that time. Could all these symptoms be lyme?

    Thanks again!

    Erica
  6. Lichu3

    Lichu3 New Member

    You're probably already doing this but you might want to check those results with your current docs as well.

    I've read a bit about Lyme through the conventional literature and I would mention some things I came across:

    1. Only IgG Western Blots are usually done after 4 weeks of illness; IgM is not suggested since the false-positive rate is high after 4 weeks. This is especially the case when the IgG Western Blot result is negative concurrently -- should be positive if active disease is present.

    2. IgM may be falsely positive in people with rheumatoid arthritis, infectious mononucleosis (as Timaca refers to), and relapsing fever.

    Interpretation of Lyme tests is complicated in that symptoms and how common the disease is in an area must be taken into account. The rate of false-positive IgGs goes up in areas where Lyme is common -- i.e. people may have been exposed to BB but do not have Lyme Disease. The conventional map has most of California (inc. Bay Area/ LA) as low.

    As you already know, treatment is controversial.

    (This input is for Erica. I am not here to start a debate and will not be answering questions posed as such. I have no energy for that.)
    [This Message was Edited on 04/02/2008]
  7. bunnyfluff

    bunnyfluff Member

    is SPECIFIC to Lyme Bb. Period.

    To test "false positive" to the other bands, you would have to have syphillis. I'm guessing that probably isn't the case for you.

    My high EBV titers (I had active EBV 3 times in 2 yrs, the last time 6 months straight) were due to Lyme.

    Thanks GOD I found out what was making me so very ill, after 10 yrs of being told "pace yourself, and learn to live with it". What a load of crap.

    I have hope for recovery, which is what I had prayed for, and I hope you will see the best LLMD you can find, and get back what has been stolen from you.

    A really good site to start with:

    http://www.truthaboutlymedisease.com/

    The infromation is clear cut, and easy to understand. I have a job where I get 100's of hours of internet time, and I have dedicated myself to research and education of this epidemic and political illness. Please also go to Lymenet~ there are some really good folks there that can help you. When you register, BettyG will give you a ton of info.

    Everyone in my family has tested positive so far. My son had complained about knee pain, and we were told it was "growing pains". Thank God that I know better, and so far he has even tested high positive on even the crappy tests. We should have Igenex back in another week or so.

    Best of luck in our club,
    Bunny
  8. Timaca

    Timaca New Member

    Yes, I really do think you should get retested for lyme again. Especially since you have chronic viral infections. If you had lyme, you would have more IgG WB bands. You have 1. Band 41. Which most people have (it is the flagella or tail of many kinds of bacteria...like bacteria in the mouth.)

    You can get tested for lyme at Stonybrook. Do a google search for Stonybrook lyme lab, and a website will come up. They will send you a kit. You can also get retested at Igenex, this time also get their confirmation test, where they will retest if you are positive on band 30 or 31...to make sure it's not a virus that you have (that is my understanding at this moment of what they do).

    I've been playing phone tag with one of the doctors at Igenex, and unfortunately missed his call today. We are covering some of these issues, for I also have high viral titers and it is likely I had lyme. I am trying to determine if the lyme is "gone" or not in me....based on WBs from Igenex and Stonybrook...

    I also think if you had lyme that you would have more symptoms throughout your body. I have muscle pain, joint pain, nerve pain, cardiac issues, headaches, head pressures, ear ringing, etc etc....

    There is no way in the world I would say "you have lyme" with the WB results that you have...band 41 on IgG and a WB that has a positive band 31...which may be because of viral infections...and it looks like you have already been diagnosed with viral infections.

    Get further checked out for lyme with other western blot tests to see if you can determine if lyme is an issue or not. Certainly you want to treat all possible infections. Certainly you don't want to treat something if it isn't there.

    Best wishes for continued healing,
    Timaca
  9. Timaca

    Timaca New Member

    Erica~ Below is a link to the Igenex band 30/31 confirmation test. It has lots of good info. Since you did not test positive on your IgM for any two of the following bands (23-25, 34,39,41, 83-93)...then it is recommended to get a confirmation test to make sure the band 30/31 is due to Bb or not. (see link). An IND band is NOT a positive band.

    http://igenex.com/Website/#

    If you test was run very recently at Igenex, they may still have some of your blood and could run this test for you.

    Best, Timaca
  10. Timaca

    Timaca New Member

    OK...so the link takes you only to the Igenex home page. Sorry. Click on "Lyme Disease" on the left side of the page. Click on "30-31 KDA confirmation."

    Timaca
  11. erica741

    erica741 New Member

    Thanks for the additional info! The info and link to the "30-31 kda confirmation" is especially helpful. I wish I understood all this when I sent in the form for my Western Blots because I could have just checked off the boxes to order that confirmation test. I suppose now I will have to have my doctor fill out another form. Do you know if I can just call Igenex and request the confirmation tests myself?

    Were you ever able to connect with that doctor at Igenex? Have you gotten anymore information on your lyme results/diagnosis?

    Also, I am curious why you got tested for lyme if you are on Valcyte, since being on Valcyte would mean you have have high viral titers. Did you get your initial lyme test(s) before or after testing your viral titers and starting Valcyte?

    Since we both have viral issues and are taking/have taken Valctye, it would be interesting to continue to compare notes.

    Thanks again!

    Erica
  12. erica741

    erica741 New Member

    Wow, that is amazing that your high EBV titers were due to Lyme! I suppose lyme is one of the factors that can activate latent viruses?

    So, having high EBV could be a result of lyme and can also affect the result of the lyme tests? Wow, if that isn't enough to get my head spinning!

    I'm so glad that you and your family finally got diagnosed. Now you can get the proper treatments and hopefully reach full recovery! Have you gotten your son's recent Igenex test results yet?

    Thanks also for referring me to those websites. I registered on Lymenet last week, but never received any information. I don't seem to be able to navigate the site very well, but maybe its just a matter of getting used to it (like this site).

    Thanks again for your advice, and I wish for a full recovery for you and your family.

    Best,
    Erica
  13. Timaca

    Timaca New Member

    I have not yet connected with the doctor at Igenex.

    You could try contacting Igenex and ask them if it is too late to run a 30/31 band confirmation on your recent test at Igenex. If not, it is likely you will need to rerun the WB and confirmation test (ask them about this).

    I was originally diagnosed with lyme, then several years later with chronic viral infections. My story can be found at www.hhv-6foundation.org Go to the patients forum, then testing for hhv-6. The thread entitled "My viral test results" is my story (I'm Timaca there too).

    Best,
    Timaca
  14. acer2000

    acer2000 New Member

    Hi Timaca,

    I have been following your story both here and on the hhv6 foundation site. I too am on Vaclyte now. I can't help but wondering, have you considered the possibility that since you originally had lyme and responded to therapy for it, you might be of the group that needs questran to clear the lyme toxins after the bugs are killed? Have you taken a VCS test? It is my understanding that if you have a "lyme toxin susceptible" HLA type as described by Dr. Shoemaker, you will still feel sick despite killing the lyme bugs unless you clear the toxin. This toxin will continue to re-circulate and suppress your immunity and make you feel crappy. Just an idea...
  15. bunnyfluff

    bunnyfluff Member

  16. munch1958

    munch1958 Member

    If you are positive for band 41 the only 3 things you can have are Lyme, syphilis or gum disease due to spirochetes.

    It says that in one of the IDSA's own papers. Please visit www.Lymecrymes.com database for journal articles on this.

    The rest of the bands on your test are Lyme specific. Band 39 is seen after at least one year of infection. How long have you been sick?

    Check out Dr Crist's Western Blot explanation:

    www.drcharlescrist.com

    Also, look at Dr Kent Holtorf's Revised WB criteria. It's in my profile. I am IgM positive and IgG negative after multiple tick bites. Guess I just don't make the right ABs.
  17. jarjar

    jarjar New Member

    Welcome to club lyme.......at least you know what to target and map out a road to recovery.
  18. erica741

    erica741 New Member

    Hi, me again!

    I got my results from Igenex for my 30-31 kDa confirmation test. The IgM was POSITIVE.

    (The IgG was negative as expected, because my Western Blot results for 30 and 31 were negative and indeterminate, respectively).

    Does this mean I have lyme?

    It's been 3 months since ending Valctye and my HHV-6 is down to 1:160, but I'm still running fevers and 90% housebound.

    I'd like to hear any feedback on my additional test results (my initial Western Blot results are posted at the top). But I am becoming more convinced that lyme could be the entire culprit of my illness, even the viral issues.

    Thanks!

    Erica

    PS. Timaca, I want to thank you especially for suggesting I get this test :)
    [This Message was Edited on 04/21/2008]
  19. mollystwin

    mollystwin New Member

    Yep, sounds like you have lyme. Welcome to our club.

    dar
  20. bunnyfluff

    bunnyfluff Member

    The DLD Club OFFICIALLY (!) has a new member. I hope you get the help and healing you need! I am so happy that one more person has arrived at the cause of all of this agony!! I really didn't think that you needed the confirmation, but for your peace of mind, I'm glad you did.


    Die Lyme Die! :)

    Bunny