test results

Discussion in 'Lyme Disease Archives' started by moreinfoplease, May 9, 2009.

  1. moreinfoplease

    moreinfoplease New Member

    I finally got the western blot test done by Igenex.

    Wanted some feedback on results and my doctor’s recommendation.

    The IGG WB was negative on all bands except #41 which was indeterminate.

    The IGM WB was negative on all bands except #31 and #41 which were indeterminate.

    The IFA was negative.

    The test results says “Presence of only one double starred band or indeterminate double starred bands in a negative report may indicate clinical significance. Therefore, we recommend testing with another method and/or retest in 4-6 weeks.”

    My doctor first recommended doing the IGG and IGM WB again, as well as the Complete Co-Infection Panel. However, after looking at the prices, which my insurance will not cover, he recommended just doing the Co-Infection Panel for now.

    My question is how significant do you think these indeterminate bands are? Are they significant enough to spend $660.00 to get the co-infection test done?

    I want to either be diagnosed with lyme or be able to cross it off the list and move on to other possibilities. And yet I have very little $$, so want to chose wisely where I am putting the $$.

    Thanks for any info you can give!
  2. Nanie46

    Nanie46 Moderator

    Hi,

    First let me tell you that Lyme is a clinical diagnosis...means it is based on a patient's history and symptoms. It can be supported by labwork, but it is not necessary.

    Secondly, Lyme is NEVER ruled out by just a negative test.....never....yet 99% of Dr's do not know this and do it all the time.

    The testing is not foolproof. Many patients with lyme have had lots of negative tests.

    I am going to include links to 2 lyme experts explanation of western blot results.....



    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

    Look at western blot info on page 7 of Dr B's paper above.



    http://www.drcharlescrist.com/testing.htm

    Read Dr C's western blot explanation on the page above.


    You will notice that Dr B says that you should see at least band 41 and one species specific band. You have band 31 and 41. Band 31 is a species specific band.

    According to Dr B's explanation, your result is significant.


    It is also important to note that coinfection testing is not foolproof either. LLMD's treat a person mostly based on symptoms.

    You will find info about coinfections in Dr B's paper.


    My LLMD told me that an IND result is like a fingerprint on a species specific band....it doesn't matter how "dark" it is....it's still the same fingerprint..In other words, he considers it positive..just didn't show up as strong.

    Sometimes coinfection testing is also done through some other labs that have good reputations for finding the infections.

    If you go to lymenet.org ...click on flash discussion...click on the medical questions board (sign up for free like you did here)....and ask what lab is best for coinfection testing, you can get some info.


    You can also find a LLMD on the Seeking a Dr board there.

    Spend some time reading all the above Dr's info in the links.....it is very important.


    I'm not sure if you are seeing a LLMD or not yet.

    Here are the ilads guidelines that are also very important. You and your Dr should become very familiar with them.......


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

    [This Message was Edited on 05/09/2009]
  3. moreinfoplease

    moreinfoplease New Member

    thank you for the information

    I will read the information you directed me to.

    I have heard before that Lyme is a clinical diagnosis, but I am confused by the idea, because the symptoms of lyme could also be so many other things, how can a doctor know just based on symptom history whether or not it is lyme?

    I would think that if you knew that you were bit by a tick and got sick afterwards, then it would be different, but that is not my experience.

    Thanks again for the info.
  4. Nanie46

    Nanie46 Moderator

    A skilled LLMD would be able to evaluate you to make that determination.

    Also, he may try a trial of antibiotics to see what your response is.....a worsening of symptoms initially is a herx because the bacteria are dying off.

    How did your illness start, if you can remember?

    Was is a flu-like illness by any chance...really bad sore throat...then started to have other symptoms weeks to months after that?
  5. moreinfoplease

    moreinfoplease New Member

    because I didn't have a real clear cut onset.

    I began complaining to doctors to excessive fatigue back in 2001, and when I look back in retrospect I recall I had such an illness weeks to months prior. However symptoms got more severe over the years. In addition, I was treated for thyroid disease in the following years and have a past history of depression, so there was confusion as to what was causing what.

    I am just so confused by all the difference of opinion re: lyme disease, and was hoping for a clear cut test result and I don't think this is it.
  6. Nanie46

    Nanie46 Moderator

    Hi again,

    I understand your confusion.

    My symptoms have gotten worse over the years also. I was never disabled, but felt like the walking dead alot of the time.

    The chronic infection causes a long cascade of things going wrong in the body with hormones, thyroid, adrenals, etc.

    It is true that many, many people who were first diagnosed with CFS or FMS later found out the cause of their symptoms was lyme disease.

    I really think that an LLMD would consider your results significant. Dr B says that alot of people actually convert to a positive test after a course of antibiotics.

    Have you watched the trailer for the movie "Under Our Skin"? see link....


    http://www.underourskin.com/watch.html

    If there happens to be a screening of this film in your area, I highly recommend it. It can also be purchased on their site.

    Can you find an LLMD and let him decide about the coinfection testing? That is what I did.





    [This Message was Edited on 05/10/2009]
    [This Message was Edited on 05/10/2009]
  7. bunnyfluff

    bunnyfluff Member

    Lyme is a tricky, stealthy character. It lives mainly in tissue and collagen, so may not
    show up in blood work on any given day.

    If you have a (any) reaction to band 31, you have run across lyme somewhere! It is exclusive to Lyme.

    I also do not know when/where I picked it up.

    I am also infected with mycoplasmas, which are responsible for Gulf War syndrome- you need to rule those out as well as co-infections of lyme.

    I look at the cost this way-

    How much $$$ will you lose over the next few years from loss of work, or ineffective treatments b/c you are not treating the REAL culprit?? If you are infected with these bacteria, they will only continue to multiply and get worse if not adequetely treated.


    Best of luck, and know that the truth is out there!

    Bunny