OT to Mrdad

Discussion in 'Fibromyalgia Main Forum' started by ckball, Aug 13, 2006.

  1. ckball

    ckball New Member

    HI- I noticed in one of your posts that you have hemochromotosis. SO do I. I was dxs in Aug 2002. I was very sick, my mind was shot and liver nummbers off the charts.

    My great Dr ran the test for hemo and I tested with both genes. I had one phelobotomy a week for about 4-6 weeks, then every other month. Now I have gone 6 months with out one, I go next week for my check up.

    I have not met anyone that has had it. I do know it is harder on men than woman. I also had gall stones at the same time and had that taken out and a liver biopsy.

    I only have mild to moderate damage because we caught it early. I compounded the problem by taking vitiams with iron hoping it would help me get some energy. It thru my pneumonia levels out of wack too. That was a really bad month.

    Now it is not a issue, I don't eat a red meat or veg and make sure my vit does not have iron in it.

    I just want to say hi to another fellow hemo freind. What is your story?

    Carla
  2. mrdad

    mrdad New Member


    I was diagnosed about the same time you were in 2002.
    Told my Doc for about a year how tired I was all the
    time and wanted to sleep all the time! She inquired
    about my family ancestory and being French and Irish
    met the definition of possible candidate for Hemachro.

    My Ferriten count was over 7300 when as you know, 50 To
    about 100 is "normal". Resultant liver damage of about
    60 %. Siblings have not developed the disorder thank-
    fully. Did blood draws about twice monthly for 3 years
    and am presently on a 120day schedule 'til we determine
    a time line accurately. Not sure if this was the "trigger"
    for my CFS as I have had so many other exposures that
    could be the source if a source medically can be defined

    I was evaluated for a Transplant but am not acandidate at
    this time! Happy for that opinion. I limit my "red blood"
    iron intake by not paranoid about meat etc. as they can
    "take it out" faster than I can put it in, they tell me.

    Would like to speak with you on this subject some more.
    Have you been acquainted with www.americanhs.org ??
    Thanks so much for the contact as I know no others with
    the disorder and maybe we can exchange further notes!
    THANKS AGAIN,
    MRDAD
  3. ckball

    ckball New Member

    I'm glad you have yours under control too. I have never heard of it until my Dr told me about, I am fanilar with the site.

    I must admit I have not spent much of the past 1 year or more on medical reseach. I got sick with many things at one time I researched them found a treatment that works, most the time then I went on to other things, like my house.

    I felt like I lost myself taking care of my mother in her home. Now I want to take care of me and my home, It is my sancturary.

    I will discuss what ever you want. But my meds have kicked in, I wrote a long post to our newbie marla. I don't know what her deal is but she needs to get it or get out. Later Carla
  4. ckball

    ckball New Member

    This is from our previous post. It's ok, my memory has many gliches. It is late for me so it was easier to look this up rather than re tell.

    It is a shame you can't show your art. There are many sites you can display your art work for free.

    I will check in from time to time but all taking some time off to finish my house before my dental work.

    I was going to be a dentist but I just couldn't sink my teeth into it :) Carla
  5. mrdad

    mrdad New Member


    Yea I thought we had discussed this before just couldn't

    quite remember. Thanks again!!

    1 P.S. I wanted to be a Dentist, but it was like
    pulling teeth to get me to study!!

    2 P.S. you've really had some good ones!

    MRDAD
  6. ckball

    ckball New Member

    I just wanted to tell you that my iron levels are still good. No phelobotomy, yeah!

    I go back in Nov.

    Victoria's MIL is 80 something and has hemo too. She is doing well. She posted to me when I was first dxs. Her MIL said that a man she knew was dxs the same time, but died within a year. I know this dd is worse for men than women.

    I wanted to be a exterminator but my clients kept bugging me.

    This game just won't go away, lol Carla
  7. mrdad

    mrdad New Member

    Victoria kindly contacted me also when she saw my Post
    about Hemo. I feel fortunate that the disorder (I try not
    to use the term disease) was caught before it did further
    damage maybe to my heart or kidneys!! "Disease" has a con-
    notation of contagion! Hard to acquire new friends when
    one tells them he or she is "diseased". Ya know what I
    mean??

    Anyway, that weekend Post of my is like the "Gift that
    keeps giving". Eventually someone will put it on an ice-
    flo and drift it off to oblivia.

    Thanks for being a good friend to us all as I know you
    are dealing with so much yourself. Admire your courage!

    MRDAD
    [This Message was Edited on 08/29/2006]
  8. ckball

    ckball New Member

    AWWWWWWWWWWWW, thank you, thank was so nice. This board has meant a lot to me. I really am going to have to lock up my laptop,lol I can't get anything done.

    I sat down an hour ago to take a short break-Thanks again for you kinds words, now my floors await. Carla
  9. mrdad

    mrdad New Member


    As always it seems, but this time it's with my Son. I be-
    lieve it's his turn to buy!! I think----

    MRDAD