Thursday, January 11, 2007

New Hope?

Our whole family got excited last night about a new study that shows promise for those of us with CFIDS. The basic story is that researchers at Stanford treated two dozen people with CFIDS with an anti-viral drug typically used to treat diseases caused by the herpes virus. The bottom line? Twenty-one of the twenty-five patients experienced significant improvement that has lasted for years after finishing the treatment! All patients whose CFIDS started suddenly with a flu-like illness recovered. The best news of all? A follow-up study (double-blind, placebo controlled) is starting this quarter, fully funded by the pharmaceutical company that makes the drug. Take a look at the details at the link - the stories of the recovered CFIDS patients are so exciting!

My boys screamed and cheered last night when they heard me telling my husband, Ken, about this study. We're all pretty fed up with this stupid disease this week. Craig and I have both been crashed for most of the past week. I've had several days where I was so sick that I spent most of the day in bed. This is unusual for me these days. It's such a disheartening feeling to see the days slip past this way.

Poor Craig has missed four days of school. He went back in this morning, but I expect a call from the school nurse at some point to come pick him up. He was still not back to normal this morning but was determined to go to school. He's had a headache for four days now, so I'm afraid he may be developing a sinus infection.

Craig's 9th birthday is Saturday, and we have plans to have a dozen boys to the house for an Amazing Race party. I'm so worried he'll still be sick. Even worse, the weather forecast is predicting rain all weekend. I was really counting on having this party outdoors! Plus, we have six of our extended family coming to stay with us for the occasion. Wish us luck...


Knittah said...

This study does seem promising! Valganciclovir has some pretty intense side effects, though. I'm trying to get my hands on the actual study as we speak.

Happy Birthday Craig! I hope everyone at your house feels better!

Anonymous said...

Can you let me know the levels that Dr. Montoya uses?
I have had CFS for 23 years and this is the first ray of hope. :-)
I have a doctors apt. on Wed. where I am going to ask to give this a try.

Anonymous said...

Hi all! I have been treated with antivirals and am near normal. You must be properly diagnosed and your doctor should know if you have multiple viral infections and treat them simultaniously and with careful follow-up on bloodwork. The only doctor I know that is treating correctly is Dr. A. Martin Lerner. Here is his Take care!

Anonymous said...


What antivirals were you put on by Dr. Lerner? Any info would be much appreciated.

Anonymous said...

I too would like to know more of the anti-virals used by Dr. Lerner. The only thing that works for me, is to juice vegtables daily, no sugar, only water and chicken. I do pretty well, but it sits and waits. If I go off the diet, "BAM!" So, it obviously will need the kick of some anti-viral. Have been waiting for the results of the Montoya study, but the disease specialist that I worked with, works with many kidney patients and said it can be a dangerous drug. One needs to be extremely cautious with it. I have heard of the Ampligen and the Acyclovir. HHMMM? I know for me it's the way it reacts to diet. Virus loves sugar! No fruit. That can send me into a relapse. Until you find an answer, please juice daily, it allows one to function semi-normal. Rather than one chore becoming an all day affair, you will actually be able to get much done, if you are strict with diet. It takes a bit to kick in, but it is the only thing I have found to work pretty well. Believe me, I have had it for ten years, been to the supposed best, spent zillions on alternative treatments and such. Been tested for everything under the sun. Even tried something experimental and not legal here in the US. Kind of hush, hush. It's viral, so must be treated as one. Virus loves a low oxygen and sugary environment. Deprive it. Do deep breathing. If you can't exercise, swing your arms back and forth, as if walking for the lymph nodes to cleanse toxins some. I went from bedridden for three years....too tired to even watch a tv or read to where now I can at least socialize to some extent. If I just could keep to the diet???? I try. Good for awhile and then, just gotta sneak that one piece of cake and it's all down hill. It's like being an alchoholic, never take that first drink. Never take that first sugar, be it honey, fruit, sucrose, fructose "any" kind!!! Today I had cookies, earlier coffee and doughnut, tonight more junk, so here I am spacy. And then I will be good for a few weeks again. I am tired of trying to be good! I want a cure and I want a piece of cake without having to suffer for it! My Best To All!