New to the Board

Discussion in 'Lyme Disease Archives' started by wrthster, Jan 31, 2007.

  1. wrthster

    wrthster New Member

    Hi all,

    Usually I am on the CFS board, but recently I was diagnosed with Lyme. I have a general question for those of you with a lot of knowledge on this issue.

    We went through Quest Diagnostics to start, I did not want to pay for Igenex until we saw the results from quest. There were as follows:

    BAND 41 BOTH IGG AND IGM POSITIVE
    BAND 39 IGG POSITIVE
    BAND 58 IGG POSITIVE

    These were the only reactive bands, does not meet the CDC criteria. My doctor is an LLMD and based on symptoms and this result has diagnosed LYME. I also fit into the case definition of CFS. So that is why I am asking for your help and opinion on based on these labs, are there enough reactive bands, and does an IGM and IGG band of the 41 strand a pretty good diagnostic marker?

    Your help and feedback is greatly appreciated.
  2. victoria

    victoria New Member

    I bumped up a post titled 'Chootiks post about Western blot' or something to that effect, altho I posted it here from the CF/FM board. I hope that helps, cuz I can never remember all the specifics.

    Not sure if it matters when it comes to interpreting it if it is from Igenex or Quest... are you sure Igenex didn't do it anyway?
    When my son had it done, his blood was taken by Quest, but sent to Igenex.

    Hope this helps.
    all the best,
    Victoria

  3. wrthster

    wrthster New Member

    Thanks very much for the help. Yes, I am sure Quest did it. But from what I can tell, band 58 means nothing. Band 39 is specific, and band 41 can be interpreted in different ways. Very confusing.

    Since prior to this I was diagnosed with CFS and FM I have speant the past four years researching that disease. I am not in a rush to go to IV antibiotics and want to double check. Sometimes I think these LLMD's will diagnos everyone with Lyme.
  4. wrthster

    wrthster New Member

    Hi,

    I'm sorry but could not find the post.
  5. 6t5frlane

    6t5frlane New Member

    I would do a Antibiotic challenge. Take oral antibiotics for two weeks stay off for a week and then do the western blot. This can make a neg turn positive if there is antibodies being made and the little devils are dying off...
  6. victoria

    victoria New Member

    many long-term Lyme sufferers do not show positive until after being treated for clinical symptoms, some do not show positive until after even 6 months of abx, from what I've read.

    The truest way to know if the abx are killing anything, is try an abx trial and see if you herx. My son was in bed the first month he took abx, that alone told us all we needed to know, altho his tests also came up CDC positive.
  7. monicaz49

    monicaz49 New Member

    41 alone is non specific to lyme...could indicate many different things. However, 39 is pretty specific. See a lyme doctor.
    What are your symptoms?
  8. nerg

    nerg New Member

    I am going through the exact same thing, where I have been diagnosed for CFS and a whole slew of other ailments along with it. With all of the treatment I have been doing my Dr. felt we were missing something and said that even though I don't remember having a tic, to test for lymes. So we did a western blot and came out with some of the bands, but not the required standard 5. My doctor also did a CD57 test, which is fairly new, that shows the amount of killer cells in your body. A normal person is supposed to have 200 plus, but a person with chronic lymes only has about 60. Which I had 64.

    Because of the amount of years I probably have had lyme my doctor wants to do the long term iv therapy as well. But my medical friends are on the other side of the opinion and don't feel it is safe, or that my tests are conclusive enough for the diagnosis. My insurance company, which not surprisingly, is denying my claim for treatment because I do not have the 5 bands on the Western blot and I don't have arthritis. So, even though I felt relieved that I had a real diagnosis that was treatable, I am back to square one.
  9. Nanie46

    Nanie46 Moderator

    Hi nerg,

    Welcome to the world of lyme. You might actually want to start a new post where more people might reply.

    Unless you had a western blot from Igenex lab in Palo Alto, CA, your western blot was incomplete and flawed. Other labs do not test for all bands...they only test for 10 IgG bands and 3 IgM bands.

    Igenex tests for all bands...14 IgG and 14 IgM bands. Some of the bands that the other labs leave out are species specific bands.....only someone who has been exposed to Borrelia bacteria would make antibodies on those bands.

    Plus those other labs only included a few species of Borrelia bacteria when they developed their testing methods. There are 100 species in the US, and 300 worldwide. Igenex used many species of Borrelia when they developed their testing methods, so they are able to detect a variety of Borrelia.

    Plus...the CDC criteria...those 5 bands.....is just a REPORTING criteria and should NOT be used for diagnosis. This is one of the biggest mistakes that Dr's make.

    Lyme is a clinical diagnosis...means it is based on your history and symptoms and can be supported by labwork.

    Lyme is NEVER ruled in or ruled out based on just a lab test.

    With a CD57 of 64, and some bands present of your western blot, together with your symptoms, makes a very good case for a lyme diagnosis.

    50% of people do not remember a tick bite or a rash...I don't.

    I had a fibromyalgia diagnosis for 21 years. I wish I knew then what I know now.

    You are lucky that your Dr is open minded enough to think of lyme as a cause.

    The thing that people forget about CFS and fibro is that you are told the cause is unknown.....well there is a cause for everything!

    Lyme is really a Borrelia infection...a bacterial spirochete that is the most complex bacteria identified to date. It can bore (like a screw) into every organ and tissue in the body.

    It is called the new "Great Imitator" because there are many presentations of the illness and it can be misdiagnosed as MS, CFS, fibro, RA, Parkinsons, Alzheimers, ADHD, autism, psychiatric disorders, etc.

    Once you educate yourself about lyme from credible sources, you will understand how your symptoms can be lyme

    Unfortunately there are a group of Dr's (IDSA) who say that chronic lyme does not exist. Insurance co's side with them because they don't want to pay.....big surprise, right?

    Therefore, lyme patients are forced to pay for most of our treatment out of pocket.

    Most of us see a Lyme literate MD who are members of ILADS. Unless lyme is caught immediately, it has spread all through the body and requires long term antibiotic treatment.

    Also, ticks also carry many other tick borne diseases like babesia, bartonella, ehrlichia, rocky mt spotted fever, q fever, etc. Only a good LLMD will be able to sort all this out and give you the proper treatment.

    If your Dr is able to sort all this out and treat you properly, then good….yes, it’s expensive. I am on three oral antibiotics and a lot of supplements..…plus lab work and the visits.

    If you need another Dr, I would recommend going to lymenet.org and registering your info for free. Click on flash discussion, then click on “Seeking a Doctor”. Post a question such as “Need a LLMD in Maryland” or whatever state you live in.

    You will get a private message with names of LLMD’s in your state. Their names are private and must not be published in posts. Insurance co’s and IDSA Dr’s persecute LLMD’s for helping chronic lyme patients…….it’s such a travesty.

    The Medical Questions Board on lymenet.org is very active and there are a lot of very knowledgable people there.

    Perhaps you want to get an Igenex western blot. www.igenex.com. Get your Dr to order test #188 and #189 western blot IgG and IgM. If he did not know to test through Igenex, then I would question his knowledge about lyme. The cost is $200.

    Start reading as much as you can…..here are some of the best resources. Do not miss your chance to find the real cause of your illness after all these years. ……..



    http://www.lymepa.org/Basics2007v1.2Rev.pdf


    http://www.ilads.org/lyme_disease/about_lyme.html


    http://www.betterhealthguy.com/images/stories/PDF/LYMDXRX2008-October.pdf

    http://www.ilads.org/files/ILADS_Guidelines.pdf


    http://www.angelfire.com/biz/romarkaraoke/whento.htm


    Come back and ask questions, and also go to lymenet.org.

    Good luck!!!!

  10. munch1958

    munch1958 Member

    This site explains testing for Lyme Borreliosis very well:

    www.drcharlescrist.com

    Also see hypercoagulation page.