Saturday, January 20, 2007

Jumping in With Both Feet

A week ago, I wrote about the exciting new study from Stanford about the 21 people with abrupt onset CFIDS who recovered with the anti-viral drug Valcyte. Since then, articles about the groundbreaking study have been popping up all over (Red Orbit, Boston Globe).

Patience has never been one of my strong points, so yesterday I started Valcyte myself to see if it will help me.

I have still been stuck in this terrible crash that began January 1, still spending days in bed with only brief periods of feeling good. I went to see my doctor yesterday. She has prescribed anti-virals (usually Famvir) for me in the past when I've gotten stuck in a particularly bad crash , and it often helped. I was like a limp rag at the doctor's office, barely able to walk.

As always, my doctor listened to me carefully (and I'm sure could see how bad I was for herself) and considered how to help me. It's a joke between us that I always have some new piece of CFIDS research in hand when I go to see her, and this time I had the new Valcyte study. She'd seen the news herself but now studied it more carefully and said she thought we could try it.

The downside? For starters, the first month's supply cost $300 (that's WITH insurance coverage; without it's $1200). Ken and I figure if it works, I'll be able to earn the money to pay for it (not to mention the money we spend on medicines and supplements now).

In addition, the study summaries I've read said that all of the patients got worse before they got better. This is a big concern for me short term, since next week I start this new consulting job that I'm already scared I won't be able to do. On the other hand, if I continue in this crash as I have for the past three weeks, I wouldn't be able to do anything next week anyway. It's a gamble either way.

I'm scared and excited and trying desperately not to get my hopes up too high. My mind keeps drifting to "what if" scenarios. What if I could work again? What if I didn't have to take a nap every day? What if it might work for my two sons?? The results in the study are so stunning, the stories of the recovered CFIDS patients so enticing.

So, I jumped in and started it. It might work, it might not. I'm trying not to think ahead, just to take each day as it comes, as I have for the past five years.

5 comments:

  1. Anonymous9:44 PM

    Sue! You and your doc are right on the money!! I've had CFS since 1990, and am a patient of a world reknowned CFS doctor, who is a wonderful person. I also have followed CFS viral research for over a decade!!

    However, as late as 2004, my CFS doctor hadn't really paid attention to Dr. A Martin Lerner's valganciclovir's (Valcyte's) treatment research and success with CFS. Probably you did not either, No fault of your's, believe me. Dr. Lerner was not a big promoter of his research and treatment findings. Nonetheless, University of Michigan's Doctor A. Martin Lerner(a CFS victim himself) has done fantastic work,... and has been studying CFS and the effects of antiviral drugs longer than anyone else, (to my knowkedge) for over a decade, with an impressive research team, and very advanced DiaSorin virule research techniques/equipment,.. and, as result, Dr. Lerner HAS BEEN USING using ganciclovir, AND its pro-drug, valganciclovir (VALCYTE)successfully for SEVERAL YEARS!!!,... in his trials, and in his private practice. He is not my CFS doctor nor am I on the drug because of it's high cost, and current lack of a cooperating doctor. Dr. Montoya and his backers,one of them Dr. Dan Petersen (a wonderful long-time(mid 1980's) CFS pioneer doc from Lake Tahoe, NV) and another quite recent entry,.. a very wealthy lobbyist from Nevada, (whose daughter has CFS) ,... were marketeers,...they knew how to get big-time publicity, attention and money,.. (witness Roche Pharmaceutical's speedy $1,200,000.00 clinical trial donation to Montoya and Stanford University) I have a copy of Dr. A. Martin Lerner's treatment patent, where he talks extensively, and convincingly, about the efficacy of valgancyclovir (Valcyte) and it's effectiveness. Do you want a copy, Sue? THE CAVEAT HERE IS: NEITHER MONTOYA OF LERNER HAVE APPROACHED ANYTHING NEAR 100% CFS RECOVERY RATES.. THEY TEND TO HIT SOMEWHERE BETWEEN 50% TO MAYBE 80% AND OF COURSE, THAT IS ALL SUBJECT TO THE TEST OF TIME. BUT, AFTER 16 YEARS OF CFS MISERY, I'D DO WHAT YOU YOU ARE DOING IF I COULD FIND A KNOWLEDGABLE DOCTOR. DROP A HAT. I'M THERE.. I'LL FIND THE MONEY!!

    PERSONALLY, I AM NOT CONVINCED THAT MONTOYA'S NEW CLINICALS WILL STRIKE A BETTER ANTI VIRULE CFS BATTING AVERAGE,... WOWEVER, THERE SEEMS TO BE A BIG NEED FOR PLACEBO CONTROLLED, DOUBLE BLIND CLINICAL TRAILS,... ESPECIALLY TO MAKE ROCHE PHARMACEUTICALS JUMP IN WITH BOTH FEET... YOU KNOW THE FEELING, EH, SUE? ANYWAY IT SEEMS TO BE A BIG STEP IN THE RIGHT DIRECTION My name is Jim Corcoran my phone is 603 542 1455

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  2. Dear Jim -

    Thanks so much for your comments. Yes, I would be very interested in reading about Dr. Lerner's reserach with antivirals. You're right - I've never heard of him or his research (and I follow CFIDS research very closely). You can e-mail me directly by clicking on the View My Profile link, then on my e-mail link.

    I'll keep reporting here on how my experimental treatment works.

    Thanks -

    Sue

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  3. Anonymous4:37 PM

    I didn't know we could get Valcyte already. I just sent in a request to my doctor for the lab tests required for the Stanford trial. The pwcs taking Valcyte became much worse at 4 weeks then gradually got better so be prepared for that. I have my fingers crossed for you and for me and for all of us pwcs!!

    fogggygyrl

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  4. Sue,
    Thank you for posting your experience. I talked with my dr last week about the Stanford trial. He's concerned about the side effects, but said it would be different if I was bed-ridden.

    I wish you the best! My prayers and thoughts are with you!
    Tracy

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  5. I am in the Stanford Trial...if you would like to talk w/ me about it, please email me:

    rooney.shannon@gmail.com

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