Thursday, May 1, 2008

To treat with Valcyte or Not?

I thought I would start a blog to write down my experiences and attempts to heal from this illness. Let me start by saying that I don't know a lot yet. I'm a baby in this illness. I've only known about it since November, 07. Actually, that would be November 2nd, exactly.

I remember what the doctor said. He is a very kind, very well respected top notched rheumatologost in the San Francisco Bay Area. After reading a carefully prepared list of symptoms and family history he came into the exam room and said "I think what you have is viral." Oh, thank goodness, I thought-it's just viral. But he continued, "You have a very serious, debilitating medical illness in which there is no known cause or cure." Huh? How can a virus be serious. He must have seen my look of confusion so he said, "it's like HIV or Hepatitus C-along those lines of a virus. Except you don't have either of those." I'm still confused. I asked about treatment. He said there is no treatment but that I should look into clinical trials. Something must have started sinking in at some level because I asked the doctor what my quality of life would be like. I remember the room got very still. He looked me in the eye and quietly said, "I don't know." Now that got my attention.

My symptoms had started over the summer and by December I could no longer work. I had a host of symptoms: dizziness, extreme fatigue, a weird wired, tired feeling, I felt faint at times, my cognitive abilities declined-I had trouble with my memory, word finding problems, and other disturbing symptoms. I lost weight. I was so certain I had cancer that hearing I had a virus was a relief. I had no idea what I was in for.

I continued to see my HMO's primary care physician. A doctor who was mediocre at best. His solution for me was to prescribe stimulants. Then antidepressants that had a stimulating effect: Prozac and Wellbutrin. I couldn't tolerate the Wellbutrin. I had trouble sleeping, had an increase in anxiety, and had an increase in heart palpitations. My doctor wasn't happy that I stopped the Wellbutrin. It's hard for doctor's who don't understand this illness. They get frustrated by their powerlessness over their inability to cure. It's still no excuse for the way some patients get treated.

I've also been doing twice monthly acupuncture since Sept. It has helped my anxiety and sleep. It's too soon to tell about anything else yet. I think my acupuncturist is wonderful.

After little progress I decided to see someone who specializes in chronic illness including cfs. I'm glad I did. He told me my cells aren't able to process oxygen very well and that my heart is affected by the virus as well. I have high titers to HHV-6 and EBV. He said my illness is profound and that it's time to throw everything at it and recommended valcyte.

My insurance won't pay for it and the cost is over $2000 per month and I would need at least 6 months of treatment so at the recommendation of my doctor I applied for patient assistance through Roche Pharmaceuticals.

I have been on the fence about being on valcyte. I have heard some stories of people getting worse. Mostly though it seems that for people who have a viral onset, a majority of people have at least some improvement. My new doctor seems to believe I'm in the subset of me/cfs/cfids patients that will respond to valcyte.

When I look at my quality of life I think how can I not try it. I'm basically housebound. My big activity for the week is a visit to the local library or maybe a quick trip to Old Navy or a quick trip to the grocery store. I can't do much. I can do some household chores. I've been in denial about how bad it is.


Laura and Layne Hansen said...

Please let me know how this is working on your CFS. I just got diagnosed and read an interesting article about valcyte for viral induced CFS. Although I'm scared to try it I too think that my quality of life right now almost requires me to try it if I can. I have yet to talk to my doctor about this drug. I would love to know how you are doing!

cfswarrior said...

Hi Laura (and/or Layne)-

I decided not to treat with Valcyte at this time. My HHV-6 titers dropped and although still high, aren't high enough to warrant going on valcyte.

If you haven't already done so I would recommend getting the following tests:

CMV (cytomegalovirsu)
Parvo Virus B19
Chlamydia Pneumonia (bacterial infection that can cause similar symptoms of CFS)
Thyroid tests
Adrenal Testing

There's a good website call HHV-6 Foundation. They have a patient site.

There are many people who decided to go on Valcyte without the proper testing. Valcyte works best on HHV-6 and CMV. If you have Epstein Barr-Valtrex is usually prescribed.

Right now I'm treating bacterial infections (lyme, babesia). Then I will go after viral infections.

Keep me posted!

Anonymous said...

Hey hon, hope you are doing well. I have 3 types of CFS. Initially it was viral, it took me 2 years to get back to 40-50%. Then i overtrained and had major adrenal dysfunction (awful feeling felt like dying most of the time) another year in bed with no tv no bright lights notthing. Finally i got hit by a very strong antibiotic and almost died and this brought a third completely different form of fatigue the worse ever. It took me 4 years and 6 months in bed to get better from all those forms now i can barely walk, cant use computer for more than an hour a day and have terrible symptoms like bloating in my stomach, weird visual and auditory problems but no great headaches (which almost drove me nuts the past years). Worse is the fatigue and IBS with bloating.

I wanted to ask you about HHV6 testing, where did you do this?? I suspect that apart from the CMV infection i also have an HHV6 or and probably some coxsackie which reactivated CMV coz i feel kind of crap last month and bloating went really bad.

I understand how you feel. I wanted to kill my self everyday for the last 3 years but am still alive now and hoping. Theres herbal antivirals too as i have heard dont know how good they are though. Check in the internet about LABOLIFE a company that makes homeopathic immunostimulating herbs and antivirals. ITs in spanish and french/italian though so you will need some dictionary for that. I also just started reading it