can my rheumy treat EBV and CMV with my fibro? so frustrated...

Discussion in 'Fibromyalgia Main Forum' started by Kimba4318, Sep 11, 2006.

  1. Kimba4318

    Kimba4318 New Member

    Hi friends! i saw an infectious disease doc 2 months ago & have been so sick (they sent me there because i had lyme 2x and was only on a short treatment so i needed more testing).

    This "nice" doc thinks my lyme treatment was effective and said i need to go back to my rheumy and believes it is lupus along with the fibro. I have heard that before, not surprised.

    I think to just get me out of the office, she said she would order some blood tests and just call me to go over the results (she thought they would all be fine). I have not had her call me back, after I have called her a total of 11 times. I had LabCorp re-fax the results & her office faxed me a copy. The Ebstein Barr Virus and Cytomegalovirus was off the charts, along with some others that I do not understand.

    I am sicker by the day - I know she has the results and her nurse keeps telling me "oh honey, these results are over my head - I will tell her to call you again to go over them..... no phone call, week after week after week.

    I am suffering and now have red dots all over me. It took me 8 weeks to even get into her and i do not know where to go from here. I need treatment NOW.

    I was wondering if my Rheumy, who can see me this week, I hope, could treat me for these viruses.

    Sorry so long - just venting.... any advice would be appreciated. Thank you so much!
    Hugs :)
  2. Kimba4318

    Kimba4318 New Member

    bumping i hopes..
  3. TerryS

    TerryS Member

    I would think your rheumy could treat you...

    I had CMV in 2002 and was very ill for several weeks. It took months to recover, but never fully recovered. Nothing they could do about it...just has to run it course (like mono).

    But sounds like you have A LOT of different things going on. Don't wait...go see your rheumy ASAP!

    Good luck!

  4. Kimba4318

    Kimba4318 New Member

    are you feeling better now? So, there is NO treatment for that? That saddens me :-( I was hoping they could help me get through it faster.

    Thanks for your advice! I will see him as soon as he callms me back... always at there mercy!

  5. TerryS

    TerryS Member

    CMV is a cousin to mono and it just has to run its course.

    But you've been ill soooo long...I'm wondering what all is going on. Sounds like MORE than CMV...hurry up and get an appointment!!! I know CMV/Epstein Barr can "trigger" FM, CFS, and Lord knows what else!

  6. 6t5frlane

    6t5frlane New Member

    RUN do not walk to a DR that understands Lyme....2x and short treatment could equal a major problem for you. Just my 2 cents
  7. Kimba4318

    Kimba4318 New Member

    thanks for your help - the inf. disease doc said "oh you should be fine with how they treated you", re: the lyme, after only 2 weeks of doxycycline. Noone else has said that was sufficient. hmmmmmm - feel so blown off - for so long.

    rheumy still has not called... go figure.
    hugs :)
  8. Mikie

    Mikie Moderator

    First, let me say how sorry I am that you are feeling so lousy and have been treated so unprofessionally and poorly by this doc. If you rheumy is willing, he or she can treat these chronic infections. If you have a PCP, he or she can do it too. Chronic Herpes-Family Viruses do not usually run their course in people with our illnesses. It takes antiviral meds and/or transfer factors to control them. They never really go away but they can be beaten back into latency. Did the doc test for HHV-6? It is very common in us and is more difficult to treat than some of the other Herpes viruses.

    Do some research on stealth viruses or chronic viruses and you will find a lot of good info. More docs are not trying the antivirals and having good luck with them. Famvir is newer than some of the others but it is also more expensive, if that is a factor. Once the viral load is down, I like the TF's because they actually train the immune system to recognize these viruses and kill them.

    Good luck to you.

    Love, Mikie
  9. Kimba4318

    Kimba4318 New Member

    and Hi Mikie... inf. disease just called me back and said "there is nothing to do - Go see your rheumy..... diet and exersize is important..." I wanted to jump through the phone. I asked if she can do the in depth lyme test... not just the western blot and she said "NO, lyme is very misunderstood, if you have swelling in your joints, the rheumy could extract fluid and look at that" I told her that would not be a problems because my one knee is full of fluid.... she said.... "good diet and exersize, I am sure your rheumy will discuss that with you... sounds like the fibro" .

    I am even more frustrated, what does she meant there are no blood tests for Lyme... I am not a doctor but have done plenty of research and there ARE better tests for the Lyme.

    Rheumy will see me tomorrow at 2, he is sort of old fashioned so God only knows what he will or won't do for me. I am so sick of EVERYTHING being blamed on the Fibro. I have had a staph infection on the past and do not know why, besides all of the other symptoms, I now have red dots all over my torso. They look like someone stuck a needle in me, all over, and left little blood marks/dots on me. There is more of them today than last week.

    SOrry so long winded again, I just need a doctor who cares but it does feel good that you all do. Thank you very much.

    Big Hugs :)

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