The Waiting Game

I was finally able to get my labs done yesterday.  I cut my morning rest short, and I arrived at the lab at 11:40 am.  They close at 12 pm for lunch.  My timing couldn't have been better.  Twenty minutes layer, I was staring at a tray full of vials filled with my blood.  An awful lot of them.

I called my husband, feeling triumphant that I had completed that task.  When I greeted him, he said, "What's wrong?  You sound terrible."  Yep, he's that good.  I guess I didn't sound as triumphant as I felt.  He could tell the ordeal had wiped me out, just by hearing me say, "Hi, babe."

So now I wait.  I wait for my doctor to get back test results that will tell her nothing... and then the test results that will tell me everything.  Am I XMRV positive? Or will I test positive for one of the other viruses they've discovered?  We'll see.  Once I know, I can decide on a course of treatment.  See if I should wait for more science or go for HAART treatment. 

Have I ever mentioned how impatient I am?  Let the torture begin.

Deflated

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. 

WOW! Could This Be Possible?

Dr. Kenny De Meirleir announced today that he has unlocked the mystery of ME/CFS.

http://www.prohealth.com/library/showarticle.cfm?libid=14579

Not only does he say he knows what causes it, but there will be a simple urine test available, most likely over the counter, for diagnosis. And then ... treatment? Cure? Is this possible?

Lurking Symptoms

You know, when I first started experiencing CFS, I wasn't even sure I had enough symptoms to qualify. I had the fatigue, cognitive problems, and headaches. Were my lymph nodes sore? I didn't know -- I had never really paid attention to lymph nodes before. How about a sore throat? Everyone gets sore throats, right? Were the ones I experienced "frequent" or normal? Was I experiencing "post-exertional malaise"? Who knew? I felt like crap all the time; how can you quantify if it was actually worse after exercise or activity?

As I've settled into this disease, I am now able to recognize lurking symptoms. They may be overshadowed by the major symptoms I experience, but now I know they are there. Yes, I get frequent sore throats, but more importantly I recognize them as a warning signal -- I overdid it the day before, and now I need to take it easy. Maybe the joint and muscle pain I feel in the morning isn't just from getting old. Hey, my lymph nodes do bother me from time to time! Plus, I'm sensitive to cold and I get night sweats; I'm sensitive to light and sound; I have itchy eyes, eye spasms and tinnitus; I have a whole heck of a lot of cognitive problems; I have dizziness and neurally mediated hypotension; and I have TMJ.

So, yes. I guess I do have CFS after all.

Is it Cancer -- Or Wishful Thinking?

Can undiagnosed skin cancer cause chronic fatigue? I've noticed I have several suspicious-looking moles. It's not surprising -- I've had palish skin since I was a child. I grew up in Southern California before sunscreen was heard of. As a teen, SPF 8 meant you were a wimp! Sun tanning oil was the rage. Every summer, I would get my traditional sunburn, which would then peel off and allow me to tan. I am a prime candidate for skin cancer!

So -- is it possible that I really don't have CFS at all, but instead skin cancer? Then, all it would take is getting rid of a few moles, maybe a little chemo (which they say is about as bad as CFS, anyway), and then voila! I'm all better!

Do we all have these fantasies? Is it denial?