**My Igenex western blot results show lyme!!!!**

Discussion in 'Fibromyalgia Main Forum' started by Nanie46, Jan 21, 2009.

  1. Nanie46

    Nanie46 Moderator

    Here are my Igenex Western blot results that I received today:

    IgG band 30 +
    band 31 IND
    band 41 ++
    band 45 +
    band 58 +

    IgM band 18 +
    band 39 IND
    band 41 IND
    band 58 +
    band 83-93 +

    This is actually negative by Igenex and CDC criteria, but I believe that there are enough positives, especially the 18, 83-93 which are species specific to Bb, to make it clearly significant.

    Dr Joseph Burrascano, a leading lyme expert in the US states in his lastest 2008 guidelines that you only need to see at least band 41 and one of the species specific bands (18, 23-25, 31, 34, 37, 39, 83, 93) to diagnose lyme disease, since only exposure to lyme borrelia would produce those antibodies.

    I called a LLMD's office and left a message to make an appt. I now have hope that I will recover from 21 years of FM.

    Please, this is why I am urging everyone to read the latest literature from the lyme experts. Go to my post titled "FM and CFS symptoms can be lyme:all should read this info!". There I list 4 papers/articles that you should start with.

    Also, if you get an Igenex western blot, make sure you get a copy and don't just let your Dr tell you it is negative!

    Update!!!!!: I just got off the phone with the LLMD's office. The nurse is the Dr's wife and the whole family has lyme. I read her my Igenex results and she said "That's all I need to hear". I have an appt with him on Sunday Feb 8. She said I will get better!!!!!!!!!!!

    You could be the next one who has hope of recovery!

    [This Message was Edited on 01/21/2009]
    [This Message was Edited on 01/21/2009]
    [This Message was Edited on 01/21/2009]
    [This Message was Edited on 01/28/2009]
  2. Nanie46

    Nanie46 Moderator

    bump to help others....
  3. victoria

    victoria New Member

    good luck with your treatment. Everyone should consider lyme as well as other tick born infections such as mycoplasma, bartonella and others; many of these can be caught other ways than ticks, by the way.

    all the best,
  4. Nanie46

    Nanie46 Moderator

    Thank you for your good wishes. It feels sooooo good to have an answer to my prayers!!
  5. Juloo

    Juloo Member

    Isn't it funny to be happy to have Lyme!

    My results were very similar to yours -- technically negative, but positive for all practical purposes.

    Much luck with treatment, and I hope you begin feeling better soon!
  6. Nanie46

    Nanie46 Moderator


    Thanks soooo much! The Dr's wife...the nurse in the LLMD's office, was so nice when I talked to her today. I think he will be an awesome LLMD because he and his wife and children have lyme.

    She really gave me alot of hope for recovery.
  7. PainPainGoAway

    PainPainGoAway New Member

    That's great, Nanie, that you were able to discover that you indeed have lyme! One of my best friends got diagnosed last March and is slowly recovering...it's been hard for her to find a doctor willing to step up so that's good that you have one!

  8. Nanie46

    Nanie46 Moderator


    Thanks so much! When you live in tick country (PA) I guess one of the "perks" is that there are some LLMD's!
  9. kat0465

    kat0465 New Member

    i know thats probably some kind of Dr. but what kind?? thanks
  10. PainPainGoAway

    PainPainGoAway New Member

    In Ohio...she initially got met w/ promises to help but she's had it too long for the protocol they (and the insurance co) decided on...

    She's not declining like she was, pretty stable but not well. I'm so glad you have a doc w/ experience!!!
  11. Nanie46

    Nanie46 Moderator


    LLMD means "lyme literate Medical Doctor". They are few and far between.
  12. buttercakes

    buttercakes New Member

    Alright!!! Now let the healing begin, at leased there is hope now.

    I've been treating my Lyme for 1.5 years, with much improvement.

    There is hope at the end of the Lyme Disease tunnel.

    Good luck with your treatment, Sandie (let us know how your treatment goes!!)
  13. elliespad

    elliespad Member

    Nanie46, hurray for you. I pray this is the beginning of your healing. I recently had my Igenex test done, my results were:

    IGG Band
    **34 kDA IND
    **41 kDA +

    IGM Band
    **41 kDA IND

    I need to see a LLMD to determine if this warrants a dx. of Lyme.

    Could I meet you in chat sometime today? Would like to ask who you are seeing.

    Thanks, and I wish you well


  14. buttercakes

    buttercakes New Member

    Does anyone ever go to the Lyme chat room??? I've never seen anyone there.....

    I would love to chat with others who have Lyme...
    [This Message was Edited on 01/22/2009]
  15. elliespad

    elliespad Member

    BDTMU516, Igenex does not participate with any private insurance companies, not sure about Medicaid or Medicare. I saved for several months to pay for mine.

    I had to pay for mine myself and will have to submit as Out of Network charges. I haven't submitted it yet, but I am sure it will be paid at normal Out of Network rates. I have a Blue Cross/Blue Shield PPO plan. Coverage is subject to your individual policy.

    I'm now saving to cover the initial fee for a LLMD. The costs for Dx. and Treatment for Chronic or Late Stage Lyme are horrific. Way beyond what I pay for all the Out of Network practitioners I see for Integrative, Alternative, or Complementary medicine, which is high.
  16. Nanie46

    Nanie46 Moderator


    I can probably chat tomorrow before lunch time....are you in PA too? You may have mentioned it and I can't remember. How do we do that so that the Dr's name remains unpublished?

    I am going to see Dr S. in the town of B, in PA. Does that give you any clues?

    Today I have an appt and then I'm having company for supper so I'll be tied up.
  17. elliespad

    elliespad Member

    No, Dr. S in B, PA doesn't give me any clue. I'm in NY, we're practically neighbors :)). I'm on throughout the day, so will try to make sure I'm on between 11 and 12 tomorrow, then we can go into chat. Everything is private in there. We'll just pick an empty room.

    Will look around online see if I can figure out the Dr. you are seeing.


  18. maps1

    maps1 Member

    So happy for you. I have been looking into this test and have to admit a little muddled about what to order.

    Could you possilby share what tests you did.

    thanks and regards
  19. pw7575

    pw7575 New Member

    I am so glad that you got a diagnosis! I found out a few months ago too that I have Lyme. I tested positive through Quest and Igenex confirmed that. I was positive all over the place...even CDC positive so there is no question that I have Lyme. I am just starting treatment with an LLMD.

    Keep us posted on how your treatment goes.

    Here's to all of us getting well again!

    Good Luck!
    Pam :)
  20. Nanie46

    Nanie46 Moderator


    Thanks. I hope your friend can find another LLMD. I know there is at least one in Western PA if she wants to travel there....just remember seeing it on my list...don't know anything about him.