Monday, July 5, 2010

Still Sick!

Somehow a whole month has gone by since my last blog. And somehow five years have gone by since I've finished a semester of college. Oh well.

I've been following the whole CDC/NIH/FDA XMRV thing very closely and with a lot of excitement. I just want them to hurry up and get it all sorted out.

My 24 urine test/hormone analysis revealed I do not have tertiary thyroid syndrome. (Yay!) It did show that my hGH (human growth hormone) was extremely low, low enough to warrant treatment. But we're not treating it because hGH activates XMRV.

Two or three years ago I thought low hGH might be what was causing all my problems. My bloodwork showed some kind of marker for low hGH so we had to do another test, but then it turned out my hGH was in range. Overall it was kind of a disappointment. Low hGH was such an easy fix. I'd have to learn to give myself frequent shots in my thigh, but other than that, easy fix.

But I'm still betting that XMRV will be shown to be the cause CFS, so no hGH.

Also, I got bit by a tick, somehow. In my last blog I said I'd take a months worth of doxycycline if I got bit by a tick again, but I'm not. I'm also betting that XMRV is the real cause behind chronic lyme.

I spent the last month slowly weaning off Klonopin. I thought I might sleep better without it. I'm finally off now, after having spent the last week taking 1/4 of a tablet every other night. I'm already wondering if it was a bad idea. My sleep is about the same, but really I'm supposed to be on Klonopin for its "neuro-protective" properties. I'm wondering if I haven't blogged all month because I don't have Klonopin protecting my neurons anymore.

And...I think I've already written as much as I can. That's it for me. Oh and by the way I am thinking more about stem cells again. I don't know why I stopped. What did I think I had to lose?

I just want to leave you with this quote I found in my old notes. It's about being really poor, but I think it applies to being really sick as well:

"Multiple Bee Stings"

Karelis, a professor at George Washington University, has a simpler but far more radical argument to make: traditional economics just doesn't apply to the poor. When we're poor, Karelis argues, our economic worldview is shaped by deprivation, and we see the world around us not in terms of goods to be consumed but as problems to be alleviated. This is where the bee stings come in: A person with one bee sting is highly motivated to get it treated. But a person with multiple bee stings does not have much incentive to get one sting treated, because the others will still throb. The more of a painful or undesirable thing one has (i.e. the poorer one is) the less likely one is to do anything about any one problem. Poverty is less a matter of having few goods than having lots of problems.

See this is why, despite having terrible tooth pain all month, I'm just this week getting to the dentist.

"What?? You still haven't gone to the dentist? Why? What if you have an infection?"

Oh yes, what a terrible thing that would be...


  1. Hi Alison
    Welcome back! I wondered if you were ok as i had not seen you blog on here for some time so i am glad to see you are still up for some blogging! I like your quote. Dont worry about the dentist, at least you havent been struck off for missing appointments like me!
    Take care xxx

  2. Hey Alison, The five years thing is interesting, I used to measure out my illness in five year intervals as in the 80s we were told ME would burn itself out in five years... After fifteen years I kind of stopped counting. I like the 'multiple bee stings' analogy.

  3. Hey, have you signed the petition to get the results of those studies published? I have a link on my blog. Let the science move forward! I, too, am hoping that XMRV is the answer to this. I'm in a phase where keeping my spirits up is getting harder to do. A little hope would be nice around now.

    Glad to have your blogging back!

  4. Please Sign the Petition to Have the NIH/FDA Study Released!!!

  5. Love the "Bee Sting" analogy. Sooooo true! Good to see you back, Alison.

  6. I loved the Bee Sting analogy too! I always miss you when you go away for long periods :).

    I haven't been tested for hGH or XMRV yet so God only knows...However, I do take Klonopin every night and my brain is still shot to shit, so I can't say it necessarily is causing the problem.

    Hope your spirits pick up soon lovely!!


  7. Hi I just found your blog -Our dd has cfs - she is nearly 17. I'm pleased to find your blog from a younger persons view.

    Love Leanne Nz