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    Old 07-03-2007, 06:37 AM   #1
    ticker
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    BigStan's IgeneX Results

    BigStan, below I have copied and pasted your post from the Open forum so we could respond here.

    Hi Everyone, I just received my test results faxed to me by my doctors office. I haven't met with him yet to go over the results. I'm trying to determine if I have Lyme but the IgeneX test data is complicated. Can anyone help me (Ticker), in dertermining if I really do have Lyme disease. What does anyone think positive or negative?? The results are:

    Lyme IgM Western Blot, Lyme IgG Western Blot

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



    TEST RESULT

    IFA. B Burgdorferi G/M/A <1:40 TITER

    Interpretation Of Antibody Titers:
    <1:40 Negative
    1:40 Indeterminate
    = OR > 1:80 Positive

    TEST RESULT

    Multiplex B. Burgdorferi (PCR)

    GENOMIC OR PLASMID BURG Negative
    PLASMID B BURGDORFERI Negative



    Ticker, If you respond I just want to say hello and thank you for all the help and education on Lyme.

     
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    Old 07-03-2007, 06:45 AM   #2
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    Re: BigStan's IgeneX Results

    Hi BigStan. I am happy to help!

    I am glad you were tested through IgeneX. The tests can be confusing.
    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 often the first to show in a Lyme infection, and yours is positive. The bands with the *** are Lyme specific bands, and yours are negative. Sometimes people who have band 45 postive are positive for the Ehrlichiosis co-infections. This was true in my case.

    You really should be evaluated by a Lyme knowledgable doctor. Technically your Western Blot is negative, but many people who have Lyme have a negative Western Blot. The CDC requires several bands to show for it to be positive. Many people who have Lyme do not have this many bands present. Lyme doctors often look at which bands show. You have symptoms and band 41 is present.

    The PCR is a DNA test for Lyme, and it looks like yours is negative.

    I hope you can see a knowlegeable doctor soon.

     
    Old 07-03-2007, 01:19 PM   #3
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    Re: BigStan's IgeneX Results

    Hello Ticker, Thanks for copying and pasting my reply. I am making the moderator angry because I keep messing up my posts.

    Anyways, here is the latest. I have been working with Dr. Markowitz Keego Harbor Mich. My next appointment with him is in August. I was hoping that if in fact I do have Lyme I could start treatment right away. The IgeneX results are confusing. The breakdown you sent is what I was looking for. I called IgeneX today and spoke with Dr. Harris. He indicated that according to CDC standards I am one, itsy bitsy + away from being dianosed as a Lymie. Just one! In fact he said I have a lot of positive results. And that if I was his patient he would start me on treatment. But he couldn't evaluate me over the telephone. He also said different doctors look at results differently.

    All I know is that I have been sick now for over a year and it is relentless. I was not hoping to have Lyme. But in the back of my head I really wanted to be diagnosed. That way I would at least have some answers and could start treatment. Dr. Harris suggested other tests possibly the urine antigen test.

    I don't know what to do. Do I or do I not have Lyme?? I know your not a doctor but you have very knowledgeable information. What would you do if you were in my shoes?

    Thanks Again

     
    Old 07-03-2007, 03:56 PM   #4
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    Re: BigStan's IgeneX Results

    Hi bigstan. If I were you, I would call the doctor's office. Is the Lyme doctor the one who ran the test? I would not want to wait until August to have a plan of action.

    You also need to be tested for the co-infections Babesiosis, both types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplamsa.

     
    Old 07-03-2007, 04:25 PM   #5
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    Re: BigStan's IgeneX Results

    Yes, he ordered the #6050 complete panel with IgeneX. But I assume that it doesn't include the co-infections Babesiosis, both types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplamsa. Are these all individual tests? If so I know that IgeneX keeps the blood serum for 90 days. Will they be able to test for these co-infections with the oringinal blood sample? What do you think about the urine antigen? Do you have an opinion on that test?

    Thanks

     
    Old 07-04-2007, 06:04 AM   #6
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    Re: BigStan's IgeneX Results

    Hi bigstan. Yes the co-infection tests are separate tests. IgeneX can test for everything except Mycoplasma. Some Lyme doctors use MDL in NJ for Mycoplasma testing.

    The urine test is another test you can do. I believe you may need to be on antibiotics for this, but check with the lab. I think you give the first sample of the morning for three consecutive days.

    I still would call the Lyme doctor's office to see what they advise.

     
    Old 07-06-2007, 10:38 AM   #7
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    Re: BigStan's IgeneX Results

    Big Stan,
    Hi I live in Michigan too and have Lyme Disease. I used to post on this forum but haven't in awhile but re-registered just to talk to you.

    I live in the Bloomfield area. I was sick for almost a year before I finally went to a LLMD (Lyme Literate Medical Dr.). My Igenex test came up positive - I have it at home and I am at work. I will pull it out this weekend to compare with yours.

    What I can't understand is why you are not seeing your Dr. until August about your test results. I can tell you from experience that the longer you go untreated the harder it is to recover from Lyme. Because of the time it took for the Drs. around here to diagnose me I have permanent problems now.

    I had 2 Western Blots at the local hospital (don't want to mention any names but it is a huge, respected hospital) and they were negative. My LLMD is in Grand Rapids and he was so confident I had Lyme he started me on antibiotics even before my Igenex test came back. My Igenex test was a strong positive and again I will let you know this weekend which bands were positive.

    Hang in there. My Dr. in Grand Rapids is great and he doesn't make you wait for a month to see him! I hate to post his name but I can tell you where to find it if you like. Let me know.


     
    Old 07-07-2007, 04:59 PM   #8
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    Re: BigStan's IgeneX Results

    Hi MichiganLymie,

    Its so nice to chat with you. My story is quite lengthy so I wll tell you what I have been going through. My symptoms started the last week of January 2006. I had strange flu-like symptoms that started then. I was so sick I couldn't work. The Super Bowl was in Detroit the first week of February. The company I had worked for did a lot of the promotional events scheduled. Yet I couldn't perform my job and lost out on a lot of good things that were to happen. Fast forward to April 2006. I'm still sick starting to have other strange symptoms. Some symptoms were: heart palpitations, anxiety, shortness of breath, spotty eyes, headaches, ear ringing (tinnitus), extreme tiredness, ect. ect. The list goes on and on. I started seeing my DO. He did a standard CBC, Thyroid and other blood tests. Everything came back normal. From April through September this doctor treated me. He chalked everything up to depression, anxiety, and panic attack's. I have a cupboard full of anti anxiety-depression pills. I tried the depression pills which didn't work in fact some made my symptoms worse. During this time of treatment I kept asking my doctor what about Lyme disease. Indicating that my job had me outdoors year around throughout Michigan. He told me "Lyme is overated and doesn't exist in Michigan." I stopped seeing this doctor. He wouldn't look past the panic - depression syndrome.

    From September 06 throughout the present day I have had numerous medical tests, Mri's, Ct's of the brain, additional x-rays, other blood work. Everything pretty much normal. I do have a C6-7 disk problem in my neck. I don't believe that it could be causing me all of the symptoms I feel. I started to try and get some answers on the internet. It is when I came on to this board that I learned of IgeneX (thanks Ticker). It is hard to find an LLMD in Michigan. I am only aware of two. One in Saginaw and one in Keego Harbor. I called Saginaw but was unable to see this doctor into August 2008. He had that big of a back log. The other doctor I've seen one time. I called his office and they agreed to sign the IgeneX lab requisition even before I ever saw him. I just had an appointment two weeks ago with him and the IgeneX results weren't completed yet. He ordered additional blood work and yesterday I had 17 tubes of blood withdrawn from me. I posted the other blood tests today if you wanted to see them. He wants to see me after the additional tests are completed. So I have at least two more weeks of waiting.

    I would be interested in comparing IgeneX reports with you. I tested positive on 4 bands with 41kda band being +++. The CDC requires positive testing on at least 5 bands to be declared Lyme. But two of mine were Indeterminate. I also would like information on your doctor in Grand Rapids. Please let me know how we can do this. I would be willing to go to Grand Rapids. I just moved from Brighton to Howell. We live pretty close to each other. Just curious do you think or know if you contracted Lyme in Michigan? I understand that if I do indeed have Lyme its harder to treat the longer it goes. That's why I'm so frustrated. I don't want this disease to progress any further. I want an answer.

    Thanks for reading.

     
    Old 07-09-2007, 10:34 AM   #9
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    Re: BigStan's IgeneX Results

    Stan - I was very interested in your story! I too got symptoms in January 2006. A weird sore throat on one side which progressed to severe jaw pain, extremely painful neck pain, etc. I went to 9 Drs. and 7 dentists in all. I was told by most of them that there is "no Lyme in MI". Everything else was ruled out - I like you had every test under the sun. Everything was normal - even my blood work.

    One Dr. took out my tonsils in March, 2006 - thinking this was the cause of my sore throat. It was not. He put me on 6 weeks of steriods for all of the swelling. Steriods are totally contraindicated for Lyme - because they lower your immune system. After these 6 weeks I began to get tremors in my head and tongue. It was really weird. I was sure I was dying of something wretched.

    Because I kept pressing on and searching the Internet I was sure I had Lyme. I then contacted the American Lyme Disease Assn. and found my wonderful, wonderful Dr. I called them on a Friday and they saw me on Monday. Without him I am sure I would be totally disabled today!

    I am not an outdoorsy type person. The big joke in my family is that I must have caught Lyme at the mall!! (Funny - not!!). The only bite I have had in years was (and this is where it gets really weird) when I flew on airplane in early December and sat with about 8 deer hunters. They were filthy and were joking that they hadn't had baths in a week. My Dr. and I surmised that they probably put their coats on my coat and a tick or ticks got on my clothes. I stayed at an Indy airport hotel the next day and when I woke up to go to my meeting I had a big huge bite on my wrist! I have never seen a tick - don't even know what they look like but I think that is how I got it. It probably attached itself to my wrist while I was sleeping and then it probably came off in the shower. I got sick about a month after that.

    Here are my Western blot results - I got 2 different results - one for Lyme IgM and one for Lyme IgG. The IgG test was negative - I think IgG means the infection has been there for awhile. My IgM was positive (IgM I heard means an active infection) - it takes 2 bands with +'s on the double starred (**) bands. He are my results:

    ** 31kDa IND
    ** 39kDa +
    ** 41kDa +
    58kDa +
    ** 83-93 kDa +

    I was such a strong positive that I met the State of New York and CDC guidelines. I was very upset but also relieved that my test was positive so I at least knew I wasn't crazy!

    To find my Dr. - go Lyme Disease Association website - lymediseaseassociation.org
    Register with your name, etc. and go on the Dr. referral section. My Dr. in Grand Rapids will come up along with the one in Saginaw. Good luck and if you need further help let me know. I just don't like to post his name.

    Stay in touch - I am interested in your journey. Been there - done that. Hang in there - it will get better. Just so you know, I am about 90% better. Last summer I couldn't even hold my head up - couldn't drive or anything. Now I am back to work full time, travel constantly and feel pretty good. The only problems I have sometimes is jaw pain, neck pain and arthritis in my fingers. All of this because NO ONE could figure out what was wrong for over 6 months! So sad that all of these fine medical minds couldn't figure it out nor would they listen to me.

    Kind regards, Sue

     
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