Coming Around to Lyme

Discussion in 'Lyme Disease Archives' started by vivian53, Mar 30, 2009.

  1. vivian53

    vivian53 Member


    I have had FM for 12 years. I have fatigue, but have always thought it was due to living with so much pain and insomnia. I have never though to seperate it in to CFS.

    I have been on the FM board almost two months and have learned a lot about Lyme too. As Munch1958 said in another post, I am one of those that was so grateful to get the diagnosis of FM and to have it finally be legitimized that I didn't want to look at it much closer. Closer as in there might be something else wrong.

    I am overwhelmed by how informed most of you are here about Lyme and all the coinfections. It is mind boggling for me. But I have learned that maybe I can get better.

    Could it be that my FM diagnosis I am clinging to is just a name for the cluster of symptoms I am having from another disease?

    Now I have looked at the symptom list on Lymepa.org and I have at least a couple in every category.

    I know I need to get a Western Blot test and find a LLMD. Nanie46 your posts have helped me understand but I still feel in the dark and really don't want to have this disease.

    I want to ask all you knowledgeable folks out there a question.... When I was first diagnosed with FM my MD gave me a course of treatment of antibiotics for a year, wouldn't this have gotten rid of the Lyme if I had it?

    Any and all responses will be appreciated?

    vivian

    [This Message was Edited on 03/30/2009]
    [This Message was Edited on 03/30/2009]
  2. Nanie46

    Nanie46 Moderator

    Hi,

    I am so glad to hear that you are realizing that FM is just a set of symptoms and that the important thing is to find the CAUSE of all those symptoms!!!!!

    Many, many people will never have the chance to get well because they accept the FM or CFS diagnosis and never think that they should keep searching for the cause......which is likely infectious.

    No one really wants to have lyme, but finding out is better than not finding out, since you can treat it.

    A one year course of antibiotics does not mean that a borrelia infection and possible coinfections were eradicated.

    It depends on if the bacteria was susceptible to that antibiotic, if the dose was even high enough to actually kill the spirochetes that hide deep within your body's tissues and organs, and if you had other coinfections that need treated too. Also, with lyme, you are not cured, you just go into remission. Some spirochetes usually remain and can sometimes reactivate with stressful events.

    You are right, you need a western blot IgG and IgM from Igenex lab in CA. www.igenex.com
    You need test #188 and#189....total cost $200.

    You can either find a Dr to order it for you and then find an LLMD, or find the LLMD and have him order it. Depending on where you live, there can be a long wait to get an appt for an LLMD.

    If you want one of your present Dr's to order it, I would print out the symptom list that you did, along with Igenex patient test request form and take both to the Dr. Then INSIST that they order tests #188 and #189. Tell them you are paying for it, and it is your choice to have this done. DO NOT let them talk you out of it. They will have every excuse in the book why you don't need it.

    They will tell you that they can order a western blot or a lyme screen from your regular lab, but do not waste your time/money on that.

    The best way to find one is to go to lymenet.org..............click on flash discussion....click on the "Seeking a Doctor" board...then sign up for free like you did here.....then post a question on the board like "Need a LLMD in Texas" (you can include the closest larger city)....you will get a private message back with names of LLMD's in your state.

    lymenet.org also has a very busy "Medical questions" board with a huge amt of very knowledgable people on it, so I highly recommend you getting on there and posting your questions too.

    Keep reading and keep asking questions. I am so glad that we can help you!

    Looking forward to more posts from you, vivian....good luck!
    [This Message was Edited on 03/30/2009]
  3. vivian53

    vivian53 Member


    You have helped me so much. I will go to my MD appt armed with knowledge, carrying my list, and just won't take no for an answer on the western blot.

    In the meantime I will search for a LLMD, probably a rare creature in this part of Texas, but I will persevere.

    vivian
  4. Nanie46

    Nanie46 Moderator

    Hi,

    I am glad that I was able to help you. I know there is at least one LLMD in Texas, probably more. I'll see you over on lymenet.org too.

    Good luck and keep in touch!
  5. munch1958

    munch1958 Member

    I hope you are able to get some answers. Yes, it's a scary road to go down but so worth it. You don't have to live with Fibro.
  6. vivian53

    vivian53 Member


    Until I started reading posts from you wise people I never would have thought your statement was true. I do now and for the first time in 14 years I DO have hope.

    Wow what a great feeling. I have a long way to go but with your help and others like us I can make it.

    vivian