acute EBV,fibromyalgia,adies pupil and lyme disease, anyone else?

Discussion in 'General Health & Wellness' started by downwiththesickness, Aug 28, 2009.

  1. downwiththesickness

    downwiththesickness New Member

    Hello, I finally convinced everyone it wasnt all in my head in order to be at the same situation of having to convince them yet again.

    About 6 months ago I had tingling in my head and headaches and was told I was prob depressed as depression will do funny things, Later on started feeling hot once in awhile ( just bare with me for a wee while I wont go on and on). So asked my OBGYN if it was possible I was having early onset menopause, She of course said no ( I am 28 years old).
    She tested me for Lyme and thyroid problems.
    Came back positive for Lyme (YAY I KNOW WHATS WRONG WITH ME , YIPPEEE)

    So my new primary doctor that I had found gave me the standard 28 day treatment
    Two weeks in I started to feel worse, went to the doc and was tested for mono spot, Negative
    a week later still feeling worse if not even more worse,and I was real persistent, She had no choice in the matter I wanted an answer why, After huffing and puffing she took some more blood.
    Tested positive for Acute Epstein Barr Virus in conelesent stage( later on I would find out not only is it rare to catch acute ebv but especially when mono spot came back negative).
    Also turns out where they had originally said I only had erlichiosis , This second test came back positive for both current and preinfected Lyme.


    So I finished the 28 days and still felt like crap with alot of ringing in my ears. The doctor tried giving me depression drugs and I told her that I would find another doctor. We hadn't got along from the beginning.

    Meantime my one pupil was getting larger than the other in the same light - Adies pupil.

    so to make a long story short my new doctor sent me to an opthamoligist and reuhmetologist and pretty much didnt want to give me anymore antibiotics for lyme cause of all the controversy, even though lyme antibodies werent changing and I am still in conelesant stage of acute ebv.
    Opthamoligist said adies pupil. rheumatologist said fibromyalgia.
    In the meantime I went out of state ( i live in NY) and the doctor out of state said well lets have your blood tested for the actual bacteria instead of just the antibodies (this test is not allowed in NY, some standard thing)
    That blood test came back positive. So now I am on a six week course of antibiotics and was prescribed Lyrica for the fibromyalgia. The only problem was the Lyrica gave me ups and downs, so now the doctor thinks I am depressed, Which Happy to report I am not I am just frusterrated. Called the rheumatologist and he said to stop taking the lyrica for a week and then start up again so that my body will no what to do with it, Kind of like a reboot.

    Now, I am not going to proof read any of that so bear with my rambling, Anyone else going through anything similar?
  2. TwoCatDoctors

    TwoCatDoctors New Member

    No one has responded. I wanted to suggest that you post on the Lyme Board here and see if they might have information for you--they are a good group of people and very informed. Good luck.
  3. Nanie46

    Nanie46 Moderator

    Hi,

    You really need a good Lyme literate MD (LLMD)who follows ILADS guidelines.

    Short term treatment will not get you into remission.

    Long term combination antibiotic therapy is required.

    You must also be properly treated for the coinfections.

    You can find a LLMD by going to lymenet.org...click on flash discussion......sign up for free like you did here...........click on the Seeking a Doctor Board and create a post asking for a LLMD in your state.

    Lymenet.org also has a wonderful Medical Questions board where you can read and learn so much from all the posts and you can ask questions. It is a very active board.

    It is really important for you to learn as much as you can about chronic lyme and coinfections.

    99% of Dr do not know how to recognize, diagnose or treat chronic lyme and coinfections.

    They will treat you short term and tell you that you are cured despite remaining symptoms.


    Here is some important info for you to read.....


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


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


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


    http://www.harp.org/Twostandardsofcare.htm


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


    http://www.lymediseaseassociation.org/



    You will also find info here on the Lyme board.


    I hope you get the proper treatment you deserve.