Igenex Question (Nanie or other Lyme people)

Discussion in 'Fibromyalgia Main Forum' started by Scapper, Jul 4, 2011.

  1. Scapper

    Scapper New Member

    I'm getting my blood drawn tomorrow and need an opinion (please :)

    Do you think I should have the Western Regional Co-infection panel done at the same time? Is this done basically when no bands are positive on the W.B.?

    Having #188 and #189.

    I have medicare.



    p.s. the soles of my feet are soooo painful for 16+ years (curious if I have Bartonella).
    [This Message was Edited on 07/04/2011]
  2. Nanie46

    Nanie46 Moderator


    Well, for most people it is a money issue. If Medicare will pay for it, then I would go ahead and have it done now.

    If not, then you could wait and do it later.

    You ask, "Is this done basically when no bands are positive on the W.B.?"

    No. This is testing for other tick borne infections, not lyme.

    Eventually, most people do have coinfection testing, even though it can be unrealiable, just like lyme testing. That's why history, symptoms and exam are so important.

    Like you said painful soles of feet usually= Bartonella.

    Make sure you get a copy of all results as soon as your Dr gets them and post them.

    If 2 weeks pass and no results, call Igenex and ask if they are done.

    They will not give you the results, but they will confirm the Dr's fax # and phone #, so you may want to write down the Dr's fax # after they write it on the order form today. Then if the results are done, they can go ahead and send them to the Dr.

    Good luck!!

  3. Scapper

    Scapper New Member

    Thank you for your direction!

    I'll keep you posted :)
  4. Scapper

    Scapper New Member

    I thank you AGAIN!!!!!!

    I had the blood drawn today. Without your direction, my G.P. would never have known what to test for. I'm lucky she even agreed to draw the blood.

    I had her test for 5085 -- might as well, since getting an appt. w/ her is very difficult.

    My emotions are extremely HIGH today......I've literally lost 16 1/2 years of living. I've spent every day of it searching and suffering through SO many protocols......detoxing constantly...barely leaving my house.

    If this has been Lyme all this time, I don't even know how to handle it.

    I feel overwhelmed! I don't think my G.P. will be able to treat me if it is positive. She's only used Doxy in her experience.

  5. Nanie46

    Nanie46 Moderator

    Aww, you're welcome!

    You know, I think all of us that have been there and many years later (21 yrs for me) found out it was lyme and coinfections, felt the same way you do right now.

    Try not to get your expectations up too high, because it can be the sickest patients who show few antibodies.

    Remember that my Igenex WB was officially CDC negative (and many are), but those few lyme specific positive and IND bands were all I needed to add to my many symptoms, history, etc.

    You are right, if you have lyme, your GP will not be able to treat you. You will need an ILADS trained LLMD.

    There is so much more to treating a chronic lyme patient because the toll of years of chronic infection creates a domino effect on all body systems....and it all has to be addressed.

  6. Scapper

    Scapper New Member

    I just don't think I have the inner strength to embark on a Lyme quest. My old "fighting" self is gone.

    I'm so cynical at this point......my outlook is jaded by my experience.

    I guess I'll just try to "keep it in the day" as they say and wait for my next appt. for results.....that'll be 3 weeks.

    In the meantime, I would kill for a good nights sleep!!!!! My coping skills are lower than low right now and I'm sure lack of sleep is contributing.

    I see my holistic practitioner next week. He has tested me "energetically" over the years and I'll have him check Lyme and all co-infections again. I will also beat him with my hands if I do have Lyme and he has missed this for 10 years (geeeez......I think I'm angry today.....haha :)

    OK, I'm rambling......I'll do some de-stressing.

    Thank you again.........until the "next step" :)

    Do you still take anti-biotics or do you treat w/ supplements at this point?

    What does ILADS stand for?


    p.s. Did you read "Gothbubbles" post entitled: "I'm still alive" -- is this out of the "norm" to get well in such a short period of time?????? She was sick for 10 years w/ severe CFS.

  7. Nanie46

    Nanie46 Moderator


    I understand how you feel. I've heard others say the same thing many times.

    ILADS stands for the International Lyme and Associated Diseases Society.


    I had not read Gothbubbles post before, but I just read it.

    It may be that she got well enough by 8 months into treatment to be able to start really living, but perhaps she is still treating.

    Most people who have had chronic lyme for many years have to treat for a minimum of several years.

    It is very different for each person depending on many health factors, how many coinfections you have, etc.

    My fatigue, brain fog and insomnia got so much better when my LLMD tested all my hormones and then prescribed bioidentical hormones. I couldn't believe the improvement.

    I take antibiotics. Doxycycline has really helped me the most, for sure. I also take alot of supplements.