hey everyone....have some questions please

Discussion in 'Lyme Disease Archives' started by blueeyedgrl73, Feb 17, 2010.

  1. blueeyedgrl73

    blueeyedgrl73 New Member

    1. Were you diagnosed through IgeneX or other lab or based on clinical symptoms?

    2. Do any of you have elevated inflammation markers such as sed rate and CRP?

    3. What are your main symptoms?

    See, I was diagnosed with seronegative RA and my Lyme tests have always been negative but I have never had them sent to IgeneX. I read where there is a rheumatologist who believes RA was caused by Lyme. I've also read that Lyme is hard to diagnose.

    Thanks for replying :)[This Message was Edited on 02/18/2010]


    Oh...and I just wanted to add that as a kid I lived in the country and played outside all the time...so ticks and such were common in the summertime. Once as a kid....I had some kind of reaction that my mother took me to the doctor for. It sounds funny but my lips and my ears swelled pretty big. The local pediatrician here just said it may be a reaction to cats or cat fleas. That was about it. I never remember a "bullseye" rash but goodness I had tons of cuts, scrapes, poison ivy etc as a kid. I'm thinking maybe I need to pursue further Lyme testing but I'm not really sure.

    Thanks again.[This Message was Edited on 02/18/2010]
  2. Nanie46

    Nanie46 Moderator

    Hi,

    1. I was diagnosed through a Lyme Literate MD (LLMD) based on clinical symptoms and lyme specific bands on my Igenex western blot which was officially CDC and Igenex negative.

    2. My sed rate and CRP are normal.

    I have a positive speckled ANA which my LLMD says he see frequently in his patients and that it usually returns to normal with treatment.

    3. My main symptoms varied depending if I was in the acute, disseminated or chronic stage of lyme:

    When I first became ill (acute) had a flu-like illness with severe sore throat.

    Weeks later (early disseminated) I experienced a constant ache in my right hip.

    Weeks later (late disseminated) I had throbbing joint pain in every single joint in my body.

    Weeks later (chronic) the joint throbbing subsided and I had widespread muscle pain, fatigue and sleep problems.

    I then received a fibromyalgia diagnosis.


    Over time I developed brain fog, poor short term memory, word finding problems, digestive problems, severe insomnia, muscle twitches, light and sound sensitivity, pins and needles/stabbing/burning sensations, etc.

    I went along for many years getting a little worse each year, but it was tolerable.

    In Feb 2008 I tried Ambien CR for sleep and it must have stirred up the lyme infection neurologically.

    I experienced excruciating head, neck and shoulder pain and stiffness which sent me on my quest for real answers.

    Everyone's story and set of symptoms is different. I know others who have lyme who have trigeminal neuralgia and migraines alot. Others are very psychiatric.

    The most common symptoms are fatigue, pain and cognitive problems.

    Many people with lyme also have other tick borne coinfections like babesia, bartonella, ehrlichia, etc, which add to the symptoms and complicate the clinical picture.

    Please do not ever rely on any Lyme test to rule out lyme. The tests are not that good and Lyme is a clinical diagnosis.

    The best western blot is through Igenex. I consider it a way to look for clues, not to rely on for diagnosis.

    Please read this important info by a lyme expert:

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

    you will find the symptom list on pages 9-11, western blot info on page 7, diagnosing later disease info page 7, coinfection info pages 22-27 of the above paper.


    Also read this testing explanation by another LLMD:

    http://www.drcharlescrist.com/testing.htm


    I do not remember a tick bite or a rash. There are many people with lyme who do not remember either of those either.


    Here's some more really good info:

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


    http://www.lymedisease.org/lyme101/coinfections/coinfection.html


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


    http://www.lymeinducedautism.com/images/Lymewhat_is_it_part_3,_LIA.pdf


    [This Message was Edited on 02/18/2010]
  3. blueeyedgrl73

    blueeyedgrl73 New Member

    Thank you for the information. I have gone to lyme.net and they have given me some names of some docs sort of in my area. I wonder if my insurance would cover the doctor appointment...do you know?

    One of the links you gave me was from a doctor and he said that taking immunosuppressive medications and steroids are really bad for Lyme. I take those meds right now and I'm concerned. The best thing for me to do is see an LLMD and go from there. I just need to know about the expense of it all and if insurance will pay. I know that IgeneX doesn't accept insurance but I wasn't sure about the doctors. I have so many symptoms of Lyme but then again they do overlap with RA symptoms too. Something different with my symptoms is that I had "fibro" type symptoms for two years before the joint pain ever occurred. It seems most stories I read about people with RA have it come on suddenly.

    Anyway, thanks for letting me ramble! I am researching tons of info about Lyme and trying to get as much info about it as I can.