Wait till I have a bad CFS flare to get blood tests done?

Discussion in 'Fibromyalgia Main Forum' started by shanwill, Mar 16, 2006.

  1. shanwill

    shanwill Member

    Wondering what people think about this. I've had the same Doc now for 2 yrs and he's pretty stumped why I have CFS. All my blood work has come back normal except for orginally positive EBV and slightly high thyroid and hypoglycemic. I haven't been tested for EBV since.

    He thinks that perhaps when I have gotten blood tests in the past that maybe the virus is been dormant and not in an active mode. So next time I get the flu-like can't get out of bed symptoms to come in and get my blood work then.

    What do you think? Am I just getting the run around or does this seem to make sense? On our last visit I asked to be referred to a specialist and he said he wanted to try this path first.

  2. jane32

    jane32 New Member

    I actually did these twice and my results were the same. I was really disappointed b/c I thought it would be different when I was weak and had 101 fever. I did just try it again though b/c my ffc dr. wanted to see if it was different. I told him that it probably won't be but he still wanted to try. I get results next week.
  3. mrstyedawg

    mrstyedawg Member

    If it were me, I would follow the doctors advice. It is very hard to find a doctor that is willing to work with you or even one that believes you. I would give it a try.

    Good luck
    Andrea
  4. shanwill

    shanwill Member

    thanks for all the advice.
    just wondering what tests i should defo ask for?
    my biggest problem is fatigue - constant - every cell of my body is exhausted.
    and thick brain fog, like you're in a dream like state or just have taken some serious cold tablets - all the time.

    Those are the most significant. the others are the usual, dizziness, stiff muscles, flu-like symptoms, etc etc.

    for you medical experts - give me the goods! :)
  5. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I pretty much know what the tests will say by how I feel. When I'm feeling CFS fatigue symptoms for too long I know my mycoplasm antibodies will be up, iron, testosterone, cortisol will be low. Those are are things to test for.


    Jeanne
  6. bunnyfluff

    bunnyfluff Member

    and got tested and my EBV was very, very high. I think they were surprised, but it gave me validation, and it made them actually take notice for a change.

    So I say, yeah, do it. I had a re-activation, and I had the other members of my family checked, and they all came back negative. I got anti-virals for a month, which did help some, and believe it or not, actually made my family feel like "hey, maybe something is actually wrong with her afterall."

    I am just afraid that since the re-activation coincided exactly with the start of my new job, that it was the stress, but we shall see. Anyway, after the anti-virals I am feeling somewhat better.

    Hope this helps.
    Bunny
  7. shanwill

    shanwill Member

    what antivirals are you taking??

    ps - i loved your pic!!! it looks beautiful.
  8. bunnyfluff

    bunnyfluff Member

    Nystatin & Acylovir (sp). I am feeling somewhat better, but still terribly fatigued. I also take Emergen-C in a bottled water once a day usually in mid-afternoon to help get me thru the day.

    I am still really fighting to get thru all of this. I "only" had FMS for the last 4 years, and now it seems I've progressed into CFS, too. I realized that something was wrong because my spleen was swollen & it hurt to eat- I thought it was my pancreas or gall bladder due to triglycerides. I have sore throat and headaches every day now, too. I am pretty upset by these latest health devlopments. I was in almost complete remission last May. I felt fantastic!! I mean, like all better, I really thought I had this thing beat. :(
  9. shanwill

    shanwill Member

    that REALLY sucks! i don't know what's worse, to never feel well again, or get better and then crash hard?!

    do you have any idea why you 'got better' in the first place? and then why the huge turn around back?

    this DD really steals our lives, and our souls. but like you, i'm not giving up. just wish we could sort it out.

    shan
  10. Kryssi

    Kryssi New Member

    Hmmm,you sound like you have so much of what I do. YOU ARE GETTING THE RUN AROUND. I had to go to over a dozen doctors before I found one who could treat me. They tested my EBV, my liver enzymes, I was told that I did NOT have lupus and did NOT have hepatits about once every two months. Ugh, which I knew already but they insisted on testing. I was told I was just depressed, I was told I had CFS but there was no treatment, I was told it was just a sinus infection, urinary infection, the flu..... I'm lucky I live in an area where there is a local practioner who treats this specifically. I'm on Dr. Tietlebaum's Fatigued to Fantastic protocol (my local doctor is administering) and am on Nystatin, Cortef, B12 sublingual, Thyroid, Ambien, Klonopin, micronutrients, a b-complex, Acetyl L Carnatine, Malic Acid, and Magnesium Aspartate. Sounds like a lot but it was customized for me based on blood results and a symptoms checklist. I feel really good now. You guys should really get this book. I'm telling you, I have fought with this for 3 long years and now I've never felt so good.. and I'm only in the first stages. If you dont' have a specialist in your area, find a doctor who will work with you on this protocol!! Half the book is written JUST FOR YOUR DOCTOR to read and to help determine how to treat you. Mine started with EBV and if it's still active in 6mos (after we get all the rest of this crap settled down) then we'll treat that. Evidentally it is 1000mg of Valtrex 4x daily with 300mg Tagamet (at same time 4x daily) for 6mos. No improvement will be seen in the first four months but after that it should go away and not recur again. This is from Dr. T's book and a research study done by Dr. Lerner.
    Good wishes to you all