My battle with RA/Fibro:How I'm Winning

Discussion in 'General Health & Wellness' started by terminator, Jan 23, 2009.

  1. terminator

    terminator New Member

    Hey guys. I am a former tv news producer battling ra/fibro. Details of my diagnosis, struggles and successes are located on www.chinika.com, a talk show-inspired, online news magazine I created to inform and inspire, especially people in my shoes. The story is called "86,400 Seconds". From shock, fear and sadness, to feelings of guilt and peace you will learn how I am now overcoming both chronic illnesses--physically and emotionally. And it is my hope that my experiences will prove beneficial to those among you who visits the site. And if you have any stories of survival, feel free to contact inspire@chinika.com.
  2. Nanie46

    Nanie46 Moderator

    Hi,

    I am an RN who has had Fibro for 21 years. I did go to your website and read some of your story.

    Please keep an open mind and listen to what happened to me....I had a flu like illness in late summer of 1987, followed by a constant ache in right hip, followed by an acute episode of throbbing joint pain in every joint in my body....followed by the chronic phase of muscle pain, stiffness, soreness, insomnia, and many other symptoms that have been known as fibromyalgia for the last 21 years.

    I frequent the FM board here. Over time I saw that people with FM or CFS were being diagnosed with lyme disease. Initially I had a lyme screen(titer) and a western blot through Lab Corp...all negative.

    In Oct 2008 I started researching lyme. I read the latest information from the best lyme experts in the country. I read how the lyme screen is worthless and western blots done at most labs are only about 30% accurate.

    I persisited until I found a Dr who would order a western blot through Igenex lab in Palo Alto, CA (MUST be done at Igenex...they have 70% accuracy....best there is).

    Even when the "official interpretation" of the Igenex western blot said negative, I knew better.
    I had educated myself on how to read a western blot. I had read "Advanced Topics in Lyme disease-Diagnostic Hints and Treatment Guidelines for lyme and other tick borne illnesses", October 2008 by Dr Joseph Burrascano..(available online)...a leading lyme expert in the US.

    I got a copy of my Igenex western blot and compared it to the Dr's information. I knew that the bands that showed up positive on the western blot were very clinically significant and did indicate lyme disease.

    I called a lyme literate Dr in my state (PA) and read the nurse my western blot results. I got half way through reading her my positive bands and she said "that't all I need to hear!". This just happened last week. The Dr, his wife (the nurse), and their children all have lyme.

    I got an appt for early Feb 2009 and will have further tests for co-infections,etc. She told me on the phone that I will get better!! I will probably start with oral doxycycline.

    In Dr Burrascano's paper and other expert literature, especially on ilads.org, it is stated that the symptoms of lyme can be misdiagnosed as fibromyalgia, RA, chronic fatigue symdrome, lupus, ALS, and many other illnesses.

    I read your symptoms and they are ALL on the lyme symptom checklist. I am sure you have had many lab tests. It is not always easy to diagnose RA...it can be confused with other illiesses. Did you have an "anti-CCP" lab test?

    I strongly urge you to have a western blot through Igenex lab, get a copy of the results and compare them to Dr Burrascano's guidelines. 3 Dr's told me all my lyme tests were negative and I did not have lyme. I am only going to recieve proper treatment because of my own research and persistance.

    My FM symptoms are all very classic.....all the tender points, muscle soreness, stiffness, pain, fatigue, insomnia, mild IBS, etc. I also have searing, burning pain, sharp stabbing needle like pains, mild light sensitivity, mild sound sensitivity, forgetfulness, neck and shoulder stiffness and pain and more. I am very functional. I always thought there was no way I had lyme because my symptoms were EXACTLY that of FM. The question was.....what caused those symptoms? I thought it was a virus. Now I believe it was a bacterial illness....lyme.

    My FM symptoms have been caused by lyme disease. Many people diagnosed with FM and RA were later found to have lyme. 99% of Dr's do not know how to recognize the symptoms and diagnose lyme.

    PLEASE, I implore you to read the best lyme literature and have an Igenex western blot. It could change your life too. For the first time in 21 years I have hope of recovery.

  3. TwoCatDoctors

    TwoCatDoctors New Member

    I don't have fibro, but there are some wonderful people on these boards. I hope you'll listen to the helpful reply you received from Nanie. I would also suggest going directly to the Fibro message board here and I think you'll find many other stories of Lyme disease too and that may be the real clincher for you. Good luck.
    [This Message was Edited on 01/26/2009]