ac77, sujay, madwolf?

Discussion in 'Fibromyalgia Main Forum' started by ForeverFlaring, Jun 5, 2003.

  1. ForeverFlaring

    ForeverFlaring New Member

    I know you are all in high demand and I thank you from the bottom of my heart for your assistance on a daily basis.

    I went to my doctor today for results from my lab work. I wont list all, but the ones I have questions about I will.

    ANA 1:80 speckled(in the past has been 1:160 and 1:320)
    AntiDNA NEG
    EBV IGG 1:320
    RBC 5.30 (slightly elevated)

    CO2 18
    Creatinine .5 L
    SED rate 23

    Urine results were fine as far as ph, ketones, etc. No RBC or WBC's and no crystals. Now, at the bottom of the urine page it says..
    Urine Miscellaneous---- Few---Sq. Epi

    So all in al not too bad if thats all the things wrong with me. I know the pos ANA can be indicative of Lupus especially since my cheeks are red. The redness makes me look hot or flushed but not like a mylar rash. I also have photosensitivity and mouth/nose ulcers. Would a slightly elevated Sed rate also be indicative of this? I had a doc say I had Lupus and then another one say I didn't. Now my new doc says yes but he is referring me to a rheumy for 2nd opinion. Just wondering if what you see here is enough to throw some flags up if this were one of your pts.

    Now as far as the EBV goes. My doc says it is high but I am not actively infected. When I tried to get answers from the web I got confused as it seems to contradict things. Would my numbers show active or chronic infection? Or is this latent?

    In the past my EBV and ANA titers have been higher. Does this mean I am getting better?

    I still think there is a Herpes link to all of this as I was perfectly functional until I got chickenpox 5 years ago. I feel like I have never recovered and I know EBV is part of the herpes family as is chickenpox. I also have genital herpes from an older boyfriend many many years ago but (knock on wood) I havent had a flare up of this in about a year, nor am I taking medication to prevent flares.

    My current doctor doesn't buy into the viral theory. I talked to him about hypercoagulation and he looked at me as if I were nuts. I also asked him about neurally mediated hypotension but he said he had no clue what it was, even though I exhibit some symptoms of this as well. His remedy is standard protocol. Antidepressants and exercise will rid me of pain and fatigue.

    If this were YOU or one of your patients, how would you feel about the lab results and a possible viral connection? Would you seek other treatment via a new physician? Is there another test I should be asking for? I have been forewarned that the rheumy I am supposed to see next month does not have the best bedside manner, so I know that I will get an eyeroll when I ask him about all of this.

    This is longer than I intended for it to be, but after a rotten visit to my physician today I am filled with more questions and more anger at this DD.

    Thanks in advance!
    Sandy (FF)
  2. sujay

    sujay New Member

    Hi, Sandy,

    I'm sorry to say I'm not too impressed with ANY of your lab results in terms of really helping with a diagnosis. I think I've been very clear about how I would proceed. Anyone with a diagnosis of CFS or FMS gets my attention in terms of worrying about hypercoagulation triggered by an infection. You need to find a doctor who is interested in looking into unusual possibilities, ESPECIALLY when standard treatment isn't working. (It's not that hard to learn about neurally mediated hypotension, either, which is well documented and generally well accepted by the medical community. He should be able to refer you for further evaluation if he's not sure how to proceed.)

    Your ANA isn't high enough to get me excited, and many people have Antibody titers to EBV similar to yours with no sign of any clinical disease. (You really can't beat Polymerase Chain Reactions to identify the pathogens we suspect may be responsible for these illnesses, but you need a doctor who's willing to check into it for you.) If I were you I'd call HEMEX Labs at 1-800-999-CLOT and find out if there's a doctor near you who is running ISAC Panels on any of their patients. Alternatively, you can get a copy of Dave Berg's article from this site and see if you can pique a doctor's interest. (Your current physician doesn't sound like the best candidate.)

    You owe it to yourself to follow through on this. I am still trying to pick up the pieces from having been ill (and I'm not going to count myself well until ALL my symptoms have resolved) but I was bed-bound for several months in 2001, and I'm now back to running a solo family practice while I single-parent a 12 year old who also became ill (in 2002). We've got our circulation (and most of our energy) back, and now we're getting ready to go after the mycoplasmsa. We're going to be WELL, and YOU COULD BE, TOO.


    Best wishes, and hoping to hear better news from you soon,
  3. ForeverFlaring

    ForeverFlaring New Member

    Thank you for replying honestly. I will admit, I was a bit upset that you would not do jumping jacks over my labs, but that is my issue, not yours at all. I guess seeing there were some abnormalities there has been a validation for me that has been comforting in knowing that I do indeed have something wrong with me. I probably took comfort in it in some weird quasi-hypochondriac way.

    All I can do from this point is move along and not look back. I haven't done a recent search on hypercoagulation but I think I saw a post that it was very expensive. Funds are very limited in my home at this point. I will definately research it more, and hope that this is covered by my primary or secondary insurance. I have not yet been approved for SSDI, so I am not eligible for Medicare.

    I am going to call the number tomorrow and see if there is indeed anyone doing this testing here. I am relatively close to Pittsburgh (within 45 minutes) so I would be able to go there for testing if need be.

    Your reply to me meant more than you will ever know. I am so grateful to have professionals here who care enough to offer advice. If I lived in the State of Washington, I think I would be knocking on your office door first thing in the morning :)

    Take care,
    Sandy (FF)
  4. ForeverFlaring

    ForeverFlaring New Member

    Bumping for Sujay to read
  5. Applyn59

    Applyn59 New Member


    Do you think that we all should investigate mycoplasmas as well as hypercoagulation
    or do we need to have some basis to do this other
    than that we are sick as dogs and have been
    diagnosed with FMS or CFS?

  6. sujay

    sujay New Member

    Always glad to be of help. Have your doctor tell your insurance company he's investigating a suspected variant of Anti-phospholipid Antibody Syndrome. Two years ago few incurance companies would cover these tests, but now lots of them seem to, so do investigate.

    I think it's best to investigate for hypercoagulation and then deal with that before looking for the pathogen. When you start herxing (because the pathogen has been "exposed" by peeling away fibrin deposition) you have a better chance of getting accurate test results.

    Hang in there, everybody. Presenting Dave Berg's article (from the archives on this site) along with a list of your symptoms that explain your concerns may encourage your physicians to look into these possibilities.

    Good luck - don't give up hope.