Thursday, October 14, 2010

Check, 1, 2, 3

Test results report
Three things showed up in my first round of blood work done at the infectious disease office: high sed rate, elevated CMV (a type of mono marker) and low B12 (240 pg/mL).

Now my sed rate has always been something of a mystery to my docs.  It is ALWAYS elevated.  This is nothing new and my old docs used to dismiss it out of hand as part of my osteoarthritis or the latest bruise I had acquired.   The ID doc didn't give me a number on this so I don't know if it significantly different now than before.  I told my regular doc about it so he is probably going through my old blood tests now to see if it trending up or down.

The CMV test while elevated doesn't differentiate between something or other that I can't remember.  Anyway it is significant enough that I need another blood test to see the difference between CMV IgG and CMV IgM.  What this means to me I've forgotten already.  I'll be reading up on it tonight.

I've been reading about B12 deficiency on Wikipedia.  Yes, I know, not the most reliable source but it is usually my starting point before I do more research on more reliable web sites: I often get good search terms from the Wikipedia articles so I get better hits off Google. I'll post more about B12 later after I've done some more research on it.  Suffice it to say they put me on 1000 mcg/day.  I took my first dose today so it is going to take a while before I start feeling the effects.  According to the ID doc, it will take four months or longer to build my blood levels of B12 back up to 'normal' levels.  I will have to have a B12 blood test again in four months to see how I'm doing.

The ID doc didn't want to comment on my CT scan until the final report was available.

The upshot of the whole thing is that the ID doc suspects that a majority of my symptoms are being caused by a B12 deficiency.  However, they don't know why it is so low.  They are thinking along the lines of malabsorption in the small intestines but this can have several causes including but not limited to Celiac or Whipple's disease (yes, I had to look that one up and yes it is rare).  They decided that they really wanted a second round of blood tests first before doing a small intestine biopsy for the other diseases.  So I donated another four vials of blood to the cause and I have to wait another three weeks for the test results but at least I get to try out the B12 supplements in the meantime.  I am so hoping this is going to be my magic bullet.  I will be over the moon happy if I suddenly start feeling better just because of a vitamin supplement.  I know this isn't the cure but at least I will be able to resume showering standing up.  And that will make me a very happy woman.

Whatever the results, I learned a huge thing during this visit.  My ID doc and I aren't speaking the same language.  What I have is weird and hard to describe.  We had the worst time trying to talk about my not being able to walk.  It isn't really muscle weakness but a weird combination of lack of energy and lack of spacial awareness.  If I close my eyes or I'm in a dark room then I seem to be floating in water and I can no longer tell which way is up.  I'm not dizzy per say but I'm definitely having trouble with up and down.  He kept asking me if I had 'gait disturbance' and I have no idea what that means.  I think I am going to have to get very specific when I describe my symptoms.  I can no longer use general but somewhat inaccurate terms such as dizzy or fatigued.  They just don't fit what is happening to me.  This was a huge breakthrough in communications.


  1. Interesting results. SED rate measures levels of inflammation, and it if often unusually LOW in people with CFS (which is puzzling since the immune dysfunction of CFS causes inflammation). So, most people with CFS have a SED rate between 0 and 3. It was one of the first and only basic blood test results that was known to be abnormal in CFS. The strange thing is that most doctors don't even notice an abnormally low SED rate because they're looking for HIGH levels.

    IgG shows evidence of past infection, and almost everyone will show past infection of CMV, Epstein-Barr Virus (EBV), and HHV-6 because they're very common infections. IgM are the first antibodies your body makes when it is first exposed to an infection, so a positive IgM indicates current or recent infection - a much less common condition.

    The B12 deficiency is interesting, too, though it's much more likely to be an effect rather than a cause. Lots of conditions, including celiac, CFS, and others, cause poor absorption of nutrients. Lots of people do see some improvement with B12 supplementation. I hope you're one of them!


  2. I didn't know that CFSers typically have low SED rates. Mine is always high even before I got sick. It has bothered my docs for years now. They have never found a good explaination for it. My ID doc is being smart about it and looking for trends rather than absolute numbers. I too am curious if it is higher or lower than before I became ill.