Saturday, October 29, 2011

The Good Doctor

I went to see one of the world's experts on CFS today.  He said I have CFS, they don't know what causes it and there is no cure.

Now normally I would have a very sarcastic response to this.  However, my main purpose in going to see him was to confirm my diagnosis.  That way the insurance companies can go suck it.  I now have three doctors on record saying I have CFS.  One of them being an expert from Harvard Medical School.  So yay me!!

The second reason I went there was to see if he had any other tricks up his sleeve for treatments that my other docs haven't tried yet.  He took blood samples and will make recommendations based on the results.  I have a follow up appointment with him in February and should expect a letter with the test results in roughly two weeks.

However,  by the end of the visit I had the distinct impression that he is not a patient centered practice.  The biggest clue was that he had no idea what veinous insufficiency is and how it might relate to my dizzy spells and almost passing out during the tilt table test.  I've read in the literature that this is common and somehow related to CFS but he didn't know anything about it.  Don't get me wrong.  He is really nice.  He listened to everything I had to say.  He asked lots of pertinent questions but his main purpose in life is research work into CFS markers.  He sees patients so that he can find candidates to donate blood for his research work.

This only mildly bothers me.  I went there expecting this so it wasn't too much of a surprise but I do know of one patient that was infuriated by this.  She had gone there expecting help with her symptoms and didn't come away with anything.  Myself?  I signed a waver and left him with several extra vials of blood and a spit sample for his research work.  Anything I can do to advance the cure.   I'll never go into medicine at this point so giving my blood, spit and filling out surveys are the best I can do.  But, it would have been nice to have a few more tools offered to me to help treat the symptoms of the CFS.

The other cool thing that came out of our visit is that I will probably be asked to participate in the Lipkin study.  Woohoo!!  That is so neat.

We did discuss glutathione and my diet.  He was happy it was helping and we agreed that we couldn't untangle how each piece was helping me and if my improvement was due to one or the other or the combination of the two.  He took notes on my diet and didn't bat an eyelash when I mentioned raw dairy.  Curiouser and curiouser.

One last note: I was really impressed with Brigham and Women's facility but damn they need better signage.  We got seriously lost trying to get to the clinic.


  1. This sounds really encouraging. And I agree, it's important to contribute to research if and when we can. Sorry he wasn't more helpful in the treatment realm though, that would be frustrating. Especially if you have to travel sick to see him.

  2. Do you have a good link to the lipkin study? Also mentioned you in my blog round up at Fibro Files. Cheers.

  3. Thanks for the shout out. I don't know much about it (the Lipkin study) as things are still in flux with regard to WPI and the lab they use for testing for XMRV. I heard Lipkin is only testing the sickest patients that are housebound and bedbound but I haven't confirmed the validity of that statement. I still haven't even received a formal inquiry yet. The doc is still reviewing my case and I don't know if I fit the profile for Lipkin's cohort. I'll post more as I learn more.