I finally have some black & white evidence

Discussion in 'Fibromyalgia Main Forum' started by Angelimbo, Jul 24, 2006.

  1. Angelimbo

    Angelimbo New Member

    I have finally got something besides EBV virus reactivation showing up in bloodwork now, that both explains many of my CFIDS/FMS problems, and is PROOF of my disability. Proof to myself, to my doubting family, and most importantly, to Social Security, should I get a full review. (I just last week sent in my first short form 455 CDR.)

    I tried a few minutes ago to post some history with this abnormal test over the past 2 years, but I lost the post. (When will I learn to use notepad to compose my posts, and then copy to the board!!!??)

    For now, I will just say that the abnormal test is part of routine bloodwork: it's called the Anion Gap. (More precisely, Elevated Anion Gap.)

    This time, with a BRAND NEW DOC.....(thank you, God!!!), when the test turned up abnormal again, I thought to google "elevated Anion Gap + CFS", and the first article that came up was from this very site!! Here it is:



    Abstract: Mitochondrial encephalomyopathy with lactic acidosis and strokelike episodes (MELAS): a mitochondrial disorder presents as fibromyalgia
    ImmuneSupport.com

    06-09-2004

    South Med J. 2004 May;97(5):528-31.
    DeSouza RA, Cardenas RJ, Lindler TU, De la Fuente FA, Mayorquin FJ, Trochtenberg DS.

    Meharry Medical College and Centennial Medical Center, Nashville, TN 38208-3599, USA.

    This case report describes a patient who presented with symptoms and signs of longstanding fibromyalgia. Routine laboratory tests revealed an elevated anion gap. Evaluation of the elevated anion gap demonstrated elevated lactate and pyruvate levels and a lactate-to-pyruvate ratio greater than 20:1. A muscle biopsy was performed, exhibiting red ragged fibers, pathognomonic for a mitochondrial disorder. The patient was diagnosed with mitochondrial encephalomyopathy with lactic acidosis and strokelike episodes (MELAS). This is the first report describing fibromyalgia as the initial presentation of MELAS.

    This article outlines the diagnostic process that can assist the physician in distinguishing mitochondrial disorders from other muscular diseases, particularly fibromyalgia.

    PMID: 15180033 [PubMed - in process]


    There is a lot more info out there, if you google MELAS.

    I am going to try approaching it with calcium, magnesium, and CoQ10, and maybe zinc. (I might try the ZMA.) I just hope my stomach can handle the mag!!!

    There are pharmaceutical approaches as well, but I want to start with nutrition and supplements first. My new doc is in complete agreement, and says we will re-test my anion gap, and probably lactate levels as well, in 4 to 6 months.

    Has anyone else ever had this show up in your bloodwork?

    I have learned the hard way to pay attention to all tests done, and to get copies of reports, and to research until I understand what they mean. We have to be our own advocates.

    Also, although I know that "sometimes" there is a "honeymoon" period with a new doc.....I feel REALLY GOOD about this young new PC doctor I have found. I am going to pray for him and thank God for him every day, because I had nearly completely given up on "doctors", after having been abused, ignored and even HARMED by so many doctors over the years!

    Blessings and soft hugs, Everyone!

    Angela




    [This Message was Edited on 07/24/2006]
  2. claudiaw

    claudiaw New Member

    Great info.

    Who did the bloodwork?

    My rhuemy did an ANA test, for Lupus, and a test for inflammation, those are the only two he mentioned.

    My ANA was low positive, which I have heard happening to FM patient's.

    To my knowledge I din't have that test, but interested in it.

    I will check out google.

    Thanks for the info,

    Claudia

    I just noticed article is from Centennial, I go to the Arthritus Clinic right next door, so surely they would have tested that. But you never know.
    [This Message was Edited on 07/24/2006]
  3. Angelimbo

    Angelimbo New Member

    Thank you for responding.

    The anion gap is part of a routine comprehensive blood panel. (Not just Complete Blood Count, but google "comprehensive metabolic panel". They used to call it SMAC or something.)

    These tests are pretty "routine" as bloodwork goes. They were ordered in my case, both in 2004 and now, as just part of a thorough medical exam. Of course, one might need to specifically ask for one.

    I had had them done many times over the past 25+ years, but these in the last 2 years, were the first ones to show the elevated anion gap. (I dug back through my records to be sure. I get copies of EVERYTHING!)

    Do you have any of your blood test reports?

    I know that this may not be the case for others, but it's worth checking out! I don't really understand why it took so long for this to show up in bloodwork for me, but it certainly corresponds with my worsening condition over the past 6 years!

    I have never been tested for Lyme, and I have always tested normal on ANA, sed-rate, and tests for Lupus.

    Thank you again for replying!
    [This Message was Edited on 07/24/2006]
  4. hagardreams

    hagardreams New Member

    Thanks for posting this.
    God bless, Julie
  5. Angelimbo

    Angelimbo New Member

    Thank you, hagardreams, for responding.

    What seemed like such a "breakthrough" for me......to finally have definitive proof......seems not to be interesting to very many.

    I guess maybe this issue is rare?

    Or is it just boring?

    Or what?

    Oh, well......
    [This Message was Edited on 07/25/2006]

    I wish for all of you to find your own answers, instead of living for as long as I have with...."we can't find anything wrong on your tests".

    God Bless
    [This Message was Edited on 07/25/2006]