Desperate for advise about lyme diagnosis

Discussion in 'General Health & Wellness' started by aliwenz, Jun 22, 2011.

  1. aliwenz

    aliwenz New Member

    Hi everyone -
    I'm new to the message board, but am just desperate for advise about my lyme tests and diagnosis. I have had over 14 years of symptoms - no history of a tick that I know of - have had weird rashes all my life. Now I have chronic (6+years) pericarditis, joint pain and fluid in hip, knee pain, muscle pain and weakness at times numbness, headaches, sensitivity to light, dizziness, fatigue, ,interstitial cystitis, endometriosis, gallballder issues .... everything seems to be inflamatory yet no lupus or rhumatology come back possitive except the ACE enzyme was very high.

    SO - my naturopath finally agreed to do the igenex labs even though she doesn't know much about lyme. the test came back like this:
    we did the full testing for lyme (PCR Western blot ... and co-infections total of about $1,400 paid out for this (thankfully my church paid it all!). On the West Blot:
    IgM 41+ 83-93IND all other neg, on IgG 41IND all other neg. According to Igenex this means I am 80% negative. I sent the results to a local LLMD and she said that it is highly suspicious for lyme - she said that having anything in the IgM was significant because lyme as it multiplies makes the immune responce go back to primary disease. She also said it lowers the immune system from even being able to make any antibodies to it - so even the IND could be significant. I just don't know what to do. I was "diagnosed" with lupus and put on chemo for a year and that ended up to be faulse ... I just wanted a CLEAR test reading and feel like I should just give up on the whole lyme thing because it is so hard to navigate! Oh I was also on the line for having bartonella which the LLMD said also suggested I have lyme. I don't know what to do or what to think of these results. The lab suggests that I do the antibiotic trial and then do the urine sample tests. I feel like I am sick of sending money and we just don't have any to spair for this. any advise would be great! Thanks!
    Oh I also have a blog about living well in chronic pain www.differenthappyali.blogspot.com
  2. Nanie46

    Nanie46 Moderator

    According to this paper by a lyme expert, your results are significant because you have band 41 and one lyme specific band....83-93.

    An IND result is like a light fingerprint...it might not be dark, but it's still the same fingerprint.

    See page 7:

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


    See pages 22-27 of the same paper to read about Bartonella and other coinfections like babesia and ehrlichia.

    I have lyme and never saw a tick, a bite or a rash. Ticks are tiny. The ones in the nymph stage are only as big as a poppyseed!! No wonder people never see them...and the nymphs can bite and make you very sick.

    Many people have only CDC negative lyme tests but they have lyme...read this:


    http://www.canlyme.com/seronegreasons.html


    Read this booklet....see the list of diagnoses that are often mistakenly given to people who really have lyme and coinfections:

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


    Also read this:


    http://www.prohealth.com/library/showArticle.cfm?libid=16301&B1=EG060111


    and read this:


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



    You have MANY lyme symptoms. Please make an appt to see a LLMD soon. Let them take a good history, do a good exam and talk about your symptoms, along with your labs.

    Also, please do this:

    go to lymenet.org.....click on flash discussion....sign up for free.....click on Medical Questions Board.....click on Post New Topic....create a post telling your story like you did here.

    You will get many intelligent answers from experienced people.

    There are tons of people with lyme who only have had CDC negative tests. Testing is unreliable.

    Your story sounds all too common to me.

    I have lots more resources/sites you can read if you want.

    Take care!










    [This Message was Edited on 06/22/2011]