“Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend." - Sarah Ban Breathnach

Monday, September 13, 2010


So, I went to the doctor today.  The last time I had seen her was two and a half years ago.  At that time, we were wading through all the tests to eliminate all other possibilities.  I wouldn't exactly say that we're back to square one, but it's probably no more than square three.

So, I need to get some labs done.  Look to see if I have lupus, Lyme, mono AGAIN.  She wouldn't prescribe Klonopin for me just yet.  She also didn't seem to be jumping up and down about the LDN.  I asked if she'd heard about the XMRV studies, and she said they were "inconclusive."  I told her there were people out here that have tested positive for XMRV and started taking HAART therapy and have been getting better.  She does support me getting tested for XMRV (I mean, what is she going to say, I'm paying for it), and she says she'll keep an open mind if I come back positive.  She would want me to consult with an ID first, just to cover her back if she does go out on a limb and prescribe the HAART meds for me.

What slight glimmer of hope did she offer me in the interim?  She gave me samples of Cymbalta.  She said many of her patients have shown significant improvement on it.  I told her that the pain is minimal for me, that the fatigue is a much greater concern.  Still, she thinks I should give it a try.  I didn't remember in the office that Cymbalta is an anti-depressive; for some reason, I was thinking it was a sleep aid.  Probably because the commercials are so similar.  I did not tolerate antidepressants well in the past; they increased my insomnia, made me feel really wired.  And I am NOT giving up my sex life.  It's the only part of LIFE that I really have left, and I'm not going to jeopardize it.  If there are any sexual side effects, we're done.

As you can see, I'm not thrilled with how things went today.  Add to it that my appointment took two and a half hours, and by the time I got in to see the doctor, I was a trembling, emotional mess.  Totally screwed up today, and I know I'll be reaping the payback tomorrow.

Still... the most important thing that happened today is that we are moving forward with the XMRV testing.  Klonopin and LDN are for interim relief, in my opinion.  I believe the HAART treatment is what will really be helpful in returning my life back to me. 


PJ said...

Oh Shelli, so disheartening! I hope you get some test results and treatment that helps! I agree - treatment that makes things worse is not worth it! Hang in there
Hugs & Prayers,

Jo said...

A tricky one - to Cymbalta or not to Cymbalta? I take an SSRI for anxiety and depression and would be a basket case without it. However, it does have that awful side effect of reducing your sex drive. I recently tried to reduce my dose because I wanted a sex life, but became pretty unstable emotionally. There are alternatives though. I also take amitriptyline which is a different kind of anti-depressant. It also has an effect on nerve pain and is great for helping sleep. Low dose amitriptyline is the standard treatment for CFS and FMS in this country.

You don't have to take anything remember. It's up to you what you put in your body. I think all of us can recognise the journey to find something that HELPS. I hope yours bears fruit for you.

Shauna said...

Hugs for you!!!