Confused and need some input please

Discussion in 'Lyme Disease Archives' started by bhasanewbug, Dec 29, 2010.

  1. bhasanewbug

    bhasanewbug New Member

    Hi, I am new to this site. The reason that brings me here is that I recently had blood work done to test for lupus and lyme. The western blot came back positive for lyme. 23KD(igm)reactive & 41KD(igm) reactive. All of the IGG came back non-reactive. I have had persistent mucle and joint pain along with memory loss, brain fog, words and sentences getting mixed up, along with other symptoms for about 2 years now. I do not recall getting bitten by a tick. Within the last month I was diagnosed with fibromyalgia. I was put on 21 days of doxycycline which I finished about 2 weeks ago for the lyme. I went to see an infectious disease doctor today, who said I do not have lyme. He said my symptoms are caused by the fibro. I am not sure that I should leave it at that. He said the doxycycline would have taken care of the lyme if I indeed was exposed to it. Shouldn't the doctor want to run more blood test's. That's it?? I should take his word for it that I do not have lyme. He said he will test again just to make me feel comfortable and will see me again in 2 weeks. Isn't there a better test to be used other than the wester blot. I really don't know in which direction I should go. Would I be better off seeking the help of another doctor?? Someone who specializes in Lyme?? Any info would be greatly appreciated. Thanks in advance
  2. Nanie46

    Nanie46 Moderator

    Hi and welcome!

    You have encountered the same problem that many people with lyme have encountered.....ID Dr's and regular Dr's really know nothing about lyme.

    They follow IDSA guidelines for short term treatment, even if you've been infected for a long time.

    You need a Lyme Literate MD (LLMD) who follows ILADS guidelines for long term treatment.

    3 weeks of doxy will not really help chronic lyme.

    Blood tests for lyme are very unreliable. Many, many people with lyme have only had CDC negative western blots....like me.

    I had a western blot from Igenex lab in CA (www.igenex.com) and even though it was CDC negative, it showed some lyme specific bands.

    Igenex tests for more bands than regular labs.

    The best thing you can do for your future health is find a LLMD and forget about the ID Dr.

    Go to lymenet.org.....click on flash discussion.....sign up for free......click on "Seeking a Doctor" board......Create a post asking for a LLMD in your state.

    Then go to lymenet.org's Medical Questions board. Read posts and post your questions. I am Dekrator48 on lymenet.

    It is a very busy board with lots of intelligent and helpful people.

    I'll tell you ahead of time that it is best to make your paragraphs only 1-2 sentences long and then double space....like I am.

    Many people with lyme have trouble reading long paragraphs...the words all run together.

    I was also diagnosed with fibromyalgia 23 years ago. It was a lyme symptom.

    I figured it out about 2 years ago and I am getting long term treatment and getting better.

    Fibromyalgia is really a symptom of a larger infectious picture that Dr's are too uneducated to figure out. They just want to give you a diagnosis like FM and prescription drugs so you can remain sick for the rest of your life.


    On page 7 of this paper by a lyme expert (read it all...it is the "Bible" of ILADS lyme treatment)...


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


    look at the part about Western blots.....you will see that 23kD is a species (lyme) specific band and is Outer Surface Protein C of the lyme bacteria.

    You will see that Dr Burrascano says you should see 41 kD and one species specific band...which you have.

    Add in all your lyme symptoms and it is common sense that you have lyme.

    Read the symptom list on p 9-11 of the same paper....

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


    You also need evaluated for common tick borne coinfections like Babesia, Bartonella, Ehrlichia, etc that ticks often carry.

    See pages 23-27 of the same paper for info on those coinfections.


    I also do not remember a tick bite. Many people do not. Many ticks are so tiny you can barely see them.

    You will not just get better on your own and your health will likely deteriorate if you do not seek proper treatment. I got worse over the years. Many people become disabled.

    Here are some more very important links you must read. The key is to educate yourself.


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



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



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



    www.lymenet.org



    http://www.angelfire.com/biz/romarkaraoke/whento.htm



    http://www.lymedisease.org/lyme101/lyme_disease/lyme_disease.html



    Now, please go to lymenet.org and find a LLMD. Take charge of your healthcare. You are smart to question that uneducated ID Dr.

    Good luck!