testing for Lyme

Discussion in 'General Health & Wellness' started by aksuzie, Nov 20, 2011.

  1. aksuzie

    aksuzie New Member

    I have had a western blot done, and i was reactive to band 41KD-IGG. I saw a homeopathic doc in Oregon, and she handed me this kit for me to take back home, to collect three urine samples and send them in for further testing. When she gave me the kit, she also wrote me a script for 200mg (daily) of doxy-and instructed me to take the test after two weeks of the anti-b, but to take it for a full month.

    This doc is not my primary physician, in fact, I live in AK, and my primary physician (who ordered my western blot and suggested lyme in the first place) wasn't comfortable with re-writing the anti-b. She was trying to get a hold of the doc in Oregon, so she could talk to her and figure out what she was trying to accomplish. The doc in Oregon never got back to her. So now I feel like I'm at a stand still. My doc is doing everything she can to help me, but I know she has hundreds of other patients (she's the best physician in my area) so I am trying to do as much research as possible on my case, so I can aide her in finding answers for me. I never got any clear answers on if I have Lyme or not.

    I still have the kit at home. What should I do?? I was treated for years (prior to finding my current physician) for fibromyalgia. I always passed off my symptoms as "normal" or "genetic", until I was told, "you think it's normal, because you've been living with it for more than half your life.... it's all you know, and you have nothing to compare it to." I always thought it was normal for everyone to get multiple headaches a week, or multiple migraines a year. I thought it was normal for everyone to not be able to bend over in the morning. I thought everyone's back felt the way mine did. I thought my vision was due to genetics. My ears will "plug up" and sometimes I will have this high pitched ringing in one of my ears. I get dizzy easily, and lightheaded every time I stand up. I can go on and on and on.

    I just need to get some answers, or at least pointed in the right direction. I feel as if my pain is getting worse, along with other things. Should I consider this Lyme, or should I test for something else? You should know that we think (if it's lyme) I was bit when I was a kid, living in Maine... 17 years ago. I don't remember any bite, but I do remember a rash. I received my medical records from when I lived there, and in almost every visit, I was there because of stomach pain, and my mother was concerned b/c I was not eating well. Can anybody help me?
  2. Mikie

    Mikie Moderator

    I took the liberty of inserting some paragraph breaks in your post to make it easier to read. Many of us cannot read posts with no breaks and will simply move on. I hope you can find answers. We have a Lyme board here and a Chronic Fatigue board, both of which get more traffic than this one. If you post on the CFIDS board, you will likely get more responses. Good luck to you. BTW, if you want to go to other boards, go to Message Boards at the upper right-hand corner and Select A Board.

    Love, Mikie
  3. Nanie46

    Nanie46 Moderator

    Hi,

    So sorry to hear about your illness. I can relate. I had a fibromyalgia diagnosis for 21 years before finding out I really had lyme and coinfections.

    Testing for lyme is very inaccurate. Many WB's will come back CDC negative, especially in very chronic patients.

    Because most Dr's simply diagnose lyme or rule out lyme based on the tests, many people go undiagnosed.

    My best advice would be to find a Lyme literate MD (LLMD) who follows ILADS guidelines instead of IDSA guidelines, and have an evaluation, which would include more testing.

    You may also have common coinfections like Bartonella(abdominal pain, sore soles, psych symptoms,etc), or Babesia, Ehrlichia, etc.

    There are a limited number of LLMD's.

    You can find a LLMD by going to lymenet.org...click on flash discussion.....sign up for free.....click on "Seeking a Doctor" board.

    Click on "Post New Topic", and create a post asking for a LLMD in AK or nearby states. When you are done writing your message, click on "Add New Topic" under your message.

    You will receive a private message with names.

    Then scroll down the page and find the drop down menu that says "Hop To"..

    Click on the drop down arrow and click on the Medical Questions Board. Here you can post in the same way...asking your questions to many people who have loads of experience with lyme and coinfections. They are very helpful.

    I urge you to do that.

    I am going to post some links that you should read. There is much to know about lyme and coinfections.

    If you want, you could urge your own Dr to start with a couple things....

    If your WB was not from Igenex, you could get one done there. They test for more bands....lyme specific bands that other labs do not include. Cost is $200 if you do not have Medicare. Igenex will send you a receipt that you can send in to your insurance to see if they will reimburse.

    www.igenex.com

    Order the free test kit online through customer service or call them. Blood draw should be done on a Mon or Tues morning, so that the lab can prepare the blood and fedex it to Igenex the same day.

    You would need test #188 and #189, WB IgM and IgG.

    Paperwork comes with the kit or can be printed from their website.

    Also, a new test has been recently developed (not through Igenex).

    This test tests for the actual bacteria through culture, not just antibodies like the WB.

    Read about it here:

    http://www.prohealth.com/library/showarticle.cfm?libid=16517


    No test is foolproof though...and that is important to remember!

    Lyme is actually a clinical diagnosis. Means it is based on history, symptoms, exam and labs...NOT just labs.

    Please read all of this:


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


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


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


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


    http://www.lymenews.org/d_CALDA_TwoStandards_7_2006.pdf