Thursday, June 14, 2012

Not feeling so well...

I'm not feeling very well. For the past few days I have felt like I was running a fever with chills, the dry gritty burning eyes, bad nightsweats. Yesterday I noticed I had a lot of small bruises on both arms as well as some petechiae on my upper left arm. There were also streaks of red that looked like Bartonella marks. Strange. I have no appetite so am forcing myself to eat.

Today I've felt badly crashed. I decided to take my temperature even though my temp usually runs around 97 or so and was surprised to see I'm running a fever. No wonder...

Concerned I may have caught something because my immune system is subpar, I decided to do a little research into my sub class immunodeficiency problem. I think the correct term is CVID (Common Variable Immune Deficiency). I realized I had never really looked at my labs. I was surprised to see that I'm on the low end of normal across the board in all 4 subclasses (2 out of 4 are low).

With a low NK function, immune deficiency, high EBV, family history of cancers including chronic lymphocytic leukemia, I can't help but feel like a walking time bomb in terms of cancer, particularly the lymphoma's.

I decided to run it by the Infectious Disease specialist whom I saw back in 2011 and who is using Rituxan on ME/CFS patients who meet the criteria. I sent an email explaining my test results, family history, and my concerns. He kindly wrote back a few hours later saying I qualify for being on Rituxan and to set up a meeting with him so they can get me started right away.

It's that darn driving thing again. I live over an hour from him and I can't drive on the freeway yet. I do want to try Rituxan. I think I need to. The side effect profile is what has prevented me from trying it in the first place even though I've had a prescription for Rituxan since 2009.

What's changed for me internally is that I'm aware that I

This is where it is tough living alone with this disease. There's so much that needs to be done but I can't get to it.

Chelsea continues to slowly go downhill. She started limping today-the same paw that she drags when walking (the vet says its related to her cirrhotic liver). I don't know if its liver related or whether she suddenly developed arthritis or if she injured it. I left a message for the vet.

Hopefully she'll let me sleep in tomorrow. I feel like I could sleep for days...


  1. An hour can be bad but not as this

    You mentioned Bartonella marks and that is what they look like! It can be caused by flea, cats not just ticks

    Check this out “Bartonella bacteria are highly evolved, survive in multiple insect vectors and in dessicated flea feces, and enter our bodies in a stealth-like manner, switching off our immune response as it takes residence in our tissues.

  2. Forgot
    A typical polio on the rise

    I would really think about holding off on Rituxan until these are checked western blot

  3. So sorry you and your dog are both struggling. So glad you are liking where you live , though . Hang in there. Sending hugs your way......wish I could do more.

  4. Anonymous-thanks for the links to some really good info. I had no idea about the seriousness and the extent of Bartonella.

    Renee-it will probably be a struggle until I feel settled and able to get back into my rest routine. You do so much just by your support....

  5. So sorry to read about all of your struggles.

    Btw: thanks for stopping by my blog earlier! I didn't know how to find you (for some reason hitting your ID blogger "name" didn't take me here - though I read your great Jung post!) and needed to do some detective work.

    I've read a few of your posts and hope that things do get better for you...these struggles you don't need, especially the negativity and meanness of the landlord! Hoping things turn around...that was great news about getting in touch with your old doctor...

    And I so hope I'm remembering it all correctly!


  6. My first question is What can I do to help? I read your 2008 post about Cher and you are a talented and eloquent writer. I wanted you to know how much I admire your writing. I have been ill with ME/CFS/FMS for 19 years and it sure doesn't get easier over time! I am so sorry you are so ill and I pray that you are better soon. It is important to find some joy and purpose each day. Blessings to you!!