Discussion in 'Fibromyalgia Main Forum' started by TXFMmom, Nov 18, 2008.

  1. TXFMmom

    TXFMmom New Member

    I was told for years that I had FM or Chronic Fatigue. I kept insisting that there was much more to it, and I could explain my symptoms and the reasons. I was an RN, Advanced Nurse Practitioner and Certified Registered Nurse Anesthetist for years before becoming disabled.

    Finally, Dr. Salvato listened to me, in Houston, TX, and tested me for B lymphocytes and subclasses. All four were low, one a little less than the others. The stimulation test did not get them to budge, so we finally had the answer. I have primary immunodeficiency. Actually, primary humeral immunodeficiency, which is an inability of the body to react to infection by producing the four subclass white cells. I could have a normal white blood count, but no one had ever tested for subclasses.

    I relate it to someone looking at a dish of pearls, and just counting the total, and then not sorting them as to size. One can have a "normal" white blood count for someone not infected or infected, but without the adequate number of ALL OF THE DIFFERENT SORTS, they may not work.

    That is what happens in this case, and my doc said they are finding it more and more in patients with a big infection rate who have been diagnosed with FM and Chronic fatigue. It is a mystery to us that I am alive, at age 57, when I was exposed to virulent infectious crap throughout my career.

    I had some very serious sore throats and infections in childhood and they removed my tonsils and it seemed to improve a little, but they just didn't understand it. Now, most children are diagnosed while in toddler hood or very early childhood. Just a few weeks ago, they had a case on Mystery Diagnosis, and the child nearly died before someone finally checked for it.

    The primary treatment is to avoid infections, and treatment with immune globulin and aggressive antibiotics for infections.

    Oh, and once one gets this diagnosis, NOBODY DISRESPECTS YOU, suddenly the doctors who have been telling you that you are a psych case, or it is ALL IN YOUR HEAD, are falling down all over themselves because YOU ARE SO ILL. This goes for SSDI and the disability insurance companies, as well.
  2. heapsreal

    heapsreal New Member

    I have the opposite, lymphocytes are elevated.
    cd3, cd4, cd8 all elevated. My doc says i have ongoing infection, probably the ebv. When i went to immunologist he didnt say anything other then recommend duloxetine.
    My own doc has me on a trial of famvir and testing lymphocytes after antivirals to see if it has an effect of lymphocyte levels.
    Good to see your getting the proper treatment.
  3. mindblower

    mindblower New Member

    Nice find by you and your doc. ME/CFS remains a diagnosis of exclusion, so good to see a doc follow through this way, listen to you and do the detective work for things that weren't matching up with ME/CFS.

    Also, the immunity issues in ME/CFS seem to be quite minor and mostly side show stuff, different to your situation by comparison and opposite too, as humoral immunity in us seems to get upregulated a bit, which is possibly connected to brain injury/dysfunction upregulating our symptathetic nervous systems.

  4. Atlanta8

    Atlanta8 New Member

    I hardly EVER get ill anymore (pre mono I was ALWAYS ill but had no CFS symptoms) - so I imagine this wouldn't apply to me. Would it be worth trying to get the test done anyway? Can you have problems if you are the opposite end of the scale? I've just checked my most recent bloods and they're all at the low end of the normal limits by the looks of it.

    I guess it would be interesting to know though. I'll ask my doc about it this afternoon, but I know what the answer will be...

  5. rjsbow

    rjsbow New Member

    My dr told me that i have a auto immune dd. Is this kinda what your are talking about? I also have very high RA levels. Rick
  6. mom2many

    mom2many New Member

    All of the Dr.'s that have seen it says "It's nothing", if it's nothing than WHY test it. My lymphocytes are also elevated (100%, should be 40-08) and my monocytes were 0% (it was flagged low, should be 15-45), I can't find any info on what this means.
    Also in my spinal tap my MBP was VERY high (4.2, should be 0-0.1) but was told that I don't have MS so I don't know why else this would be this high
  7. mom2many

    mom2many New Member

    It seams the high MBP might also have something to do with have shingles. I can't find prove yet.
    I don't think I have GWS but I do have Fibro & MCS and GWS seams to be like MCS & CFS and or Fibro at the same time.
  8. quanked

    quanked Member

    your post on the tests for this disease I asked my doc for the tests. She was okay with it but seemed worried about justifying them to my ins for payment purposes. I still need to get my blood drawn. Hopefully, I will get to it tomorrow.

    I also have a sleep study scheduled. I do not see the point. I imagine it will be somewhat of a nightmare of a night. I should know sometime in Dec. whether or not I have PID.
  9. 2sic2mooov

    2sic2mooov New Member

    I am always grateful to find others on board here that have medical/nursing backgrounds, because they know at least SOMETHING about labs and arent afraid to push for answers from their docs.
    I have been months now with severe relapse that keeps me mostly in bed. It has been almost 2 years that I "slid" considerably and now have relapses out of the blue that are VVERY debilitating.
    All systems have been affected this round...cardiac, other muscles, brain, gastro..etc. I had testing in Oct. that i have been looking back on (with online medical info we have access to). I was not told that anything at all was "off". I have found that my complete blood panels shows my LYMPHOCYTES to be low at 11.7 (Norm is aproximate 20-51). My nuetrophils are a bit high at 80.9 (norm is 42.2-75.2). WBC was in the higher side of normal. Does this just mean I HAD an infection of some sort at the time, or should i be concerned that this shows some immune compromised situation. (Well, CFS is told to have this but docs say there is no proof). Anyone else have these sorts of "off" white blood cell results?

    Hope you are doing well. can you tell me what they are doing to help you now and in the past 3 months has your health improved?