Stanford rolls out new chronic fatigu...

Stanford rolls out new chronic fatigue fix

There are 107 comments on the Palo Alto Daily News story from Jan 16, 2007, titled Stanford rolls out new chronic fatigue fix. In it, Palo Alto Daily News reports that:

A new treatment under development at the Stanford School of Medicine uses antiviral drugs to wipe out the debilitating symptoms of some patients with chronic fatigue syndrome.
A new treatment under development at the Stanford School of Medicine uses antiviral drugs to wipe out the debilitating symptoms of some patients with chronic fatigue syndrome. <br/> <br/>The Centers for Disease Control and Prevention estimates that more than 1 million people suffer from the disease, but not all may improve under the treatment. <br/> <br/>Dr. Jose Montoya, an associate professor of medicine at Stanford and director of the National Reference Laboratory for Toxoplasmosis at the Palo Alto Medical Foundation, has been able to significantly improve the condition of 85 percent of his patients who suffer from the Epstein-Barr virus and human herpes virus 6. <br/> <br/>"Our proposal is that the two viruses working together are creating and maintaining the disease," Montoya said. <br/> <br/>Montoya uses a drug called valganciclovir that targets the two viruses, which often occur together in chronic fatigue sufferers. <br/> <br/>He first used the drug to treat a South American patient with swollen lymph nodes and very high levels of antibodies for the viruses in 2004, giving her a six-month dosage rather than the typical two weeks. Soon she called Montoya to say her lymph nodes had shrunk and her fatigue was diminishing. <br/> <br/>"I then relayed that experience, and 25 patients later we have 21 patients whose lives have completely turned around," Montoya said. <br/> <br/>He noted that because the patients' conditions initially worsen, he does not believe a placebo effect is at work. He plans to reinforce his results with a larger, carefully controlled study this spring. <br/> <br/>Chronic fatigue is a disease that has drawn many skeptics. <br/> <br/>"It's maddening to have something like this and have people not believe you," said Michael Manson, a recipient of the new therapy and one of the founders of PetSmart. <br/> <br/>Manson, 47, said he had been suffering from the syndrome for 17 years before he began Montoya's treatment in 2006. After he contracted the disease in 1988, his business partner came down with the same illness within a week, he said. <br/> <br/>Though Manson remained at PetSmart for seven and a half more years, he "couldn't do much outside of the company," he said. <br/> <br/>The man who earlier trained for triathlons and put himself through Stanford and Harvard Medical School was too tired to play with his children. "I would take long naps every day and be ill for a week or two at a time," he said. <br/> <br/>When he began Montoya's treatment he initially "went down with all the symptoms in spades," he said. <br/> <br/>"For six weeks I was very ill ... and then slowly I started climbing out of it in mid-September, feeling better and better," Manson said. <br/> <br/>These days, Manson said he hikes two to four miles each day and is back at work as a managing partner at an investment group. <br/> <br/>Kim McCleary, president and CEO of Chronic Fatigue and Immune Dysfunction Syndrome Association of America, said Montoya's study is "very big news." <br/> <br/>"There's been an almost 20-year lull in the exploration of antivirals as potential treatments for chronic fatigue," McCleary said. "It looks very promising." <br/> <br/>Montoya is seeking participants for a new clinical trial of the treatment, likely starting next month. More information is available at the Web site (www.vicd.info/clinicaltrial.html). <br/> <br/>E-mail Kristina Peterson at [email protected] <br/>
Lee

Sydney, Australia

#84 Mar 28, 2008
El Buey wrote:
Boy, here's the cure: Get up off your lazy asses. We've come up with just about every disease for anything....pure crap.
How sad I feel for you to not have any compassion for people who are truly suffering with this illness while their minds and bodies are screaming out to be just like everybody else and able to enjoy their lives with their children, spouses and friends without pain and incapacity.
GROW UP AND GET A LIFE.
Katherine

Baton Rouge, LA

#85 Apr 22, 2008
Nancy, I have been unable to find a Doctor in the New Orleans area who will prescribe Valcyte. Is your Doctor in Houston?
Andrewdisco

Toorak, Australia

#86 Apr 29, 2008
I've been using valtrex for as while now. On 1000mg daily dose i notice a significant difference after about 2 weeks of taking it.

I can only get our PBS scheme to cover half of it unfortuantely. So I just get a private perscription for the other half which costs me about $145 for 30 tablets.
Christina

Mountain View, CA

#87 Jun 13, 2008
Years ago, I had chronic fatigue. I found a little article by a doctor who had the theory that it was caused by an overwhelmed immune system. He had tried a therapy treatment with his patients that included (a) a course of anti-viral drugs,(b) course of antibiotics,(c) anti-yeast medication and a low-sugar-starch diet, and then for some patients, adrenal drugs and chelation. I asked my doctor if there was any reason not to replicate this course of sequential drugs, and she was willing to try it.
The anti-viral was Valtrex - commonly available for Herpes - and it completely changed my life.
In other words, you don't need to use these extreme drugs use dint he Stanford study. Ask your doctor to try a course of Valtrex. And get off the sugar in any case.
becca

Denver, CO

#88 Jul 29, 2008
Katherine- I saw your post asking about a doctor in Houston since you live in New Orleans. Dr. Salvato at Diversified medical in Houston is AWESOME.
Linda

Adelaide, Australia

#89 Aug 16, 2008
Andrewdisco wrote:
I've been using valtrex for as while now. On 1000mg daily dose i notice a significant difference after about 2 weeks of taking it.
I can only get our PBS scheme to cover half of it unfortuantely. So I just get a private perscription for the other half which costs me about $145 for 30 tablets.
My 15 year old son has been diagnosed with Chronic Fatigue syndrome and was consulting a paediatrician. He has passed us onto Monash to a course for juveniles with the condition. No one has mentioned anti viral drugs. I was wondering how long you have had your illness and whether you were prescribed Valtrex by your GP or a specialist. If you want to email me on [email protected] I would be very grateful. Good luck with your treatment. It is hard to believe so many people are sick with an illness that most doctors don't seem to want to know about.
Lucky

Nampa, ID

#90 Aug 16, 2008
Sunita wrote:
I have been diagnosed with CFS/FM and also Mollaret's meningitis which a rare form of reoccurring viral meningitis. I have had it 5 times in my life, and am completely debilitated by my symptoms of CFS/FM.
I am now a patient of Dr. Montoya at Stanford. I am not officially in the CFS study because of the meningitis which adds another dimension to it. But I will be starting on Valganciclovir next month, I guess as my own study for Dr. Montoya. After reading the dangers and side effects of the drug, I am concerned about its long term effects. Is there anyone out there who has completed a course of Valganciclovir already? Could you please share your experiences on this drug and afterwards?
I have had MOLLARET'S MENINGITUS fifteen times. Just got over it. Apparently I was the fifth person in this country to have been diagnosed with this form. I would like to visit with others that have this, and am looking for any new information or studies done recently.You can contact me at [email protected] Address it to LUCKY........(-
Rita

Bilston, UK

#91 Aug 21, 2008
I also live in Northern Ireland and have had CFS for about 5 years now.I'd also love to take part in a trial.Have you had any luck finding any you coiuld take part in?
Me sleepy

Newark, CA

#92 Aug 22, 2008
Me ti ti. zzzzz
its

San Jose, CA

#93 Aug 22, 2008
poor dieting, and lack of excerise,,i am starting to get my self up and excersice, i am getting fat...but its goin good and lookin fine
Denise

United States

#94 Sep 16, 2008
Can you please update me on your use of Valdyne-Dosing and exspence compare to Valtrex. I have had CFIDS for 12 years. My 2 sons who were ill at same time were in Ampligne study and were never ill again. I am hopeful for first time after many failed treatments
Denise

United States

#95 Sep 16, 2008
Just wondering if Valtrex is continuing to help you? I am going to ask my doc in a few weeks to start me on it. My insurance pays with my 30% copay. It ill be difficult. What dose are you on? Thanks so much
Kat

Glendale, AZ

#96 Oct 18, 2008
Hi Kris,

I doubt you get back here, since you posted this last in 2007, but I am where you were then. I have tested for enormous levels of antibodies to CMV, EBV and HHV-6, in addition to other viruses, for the last five years, even while on high doses of Valtrex. Based on my history of symptoms, at least four MDs I have seen or currently see say I must have had at least the EBV and HHV-6 since I was 21. I am 46 now, so that's 25 years.

If you should get back here, can you let me know how long you felt badly with the Valcyte? I have been on it five or six days (450 mg x 2 once daily), and the first three days felt increased energy. Since then, I feel just like I did before it: Dead. I wonder if I need a higher dose. Do you think it could be that I have had these viruses inside my body too long to get well on Valcyte ever? I used to be able to "recover" to near-normal after resting three months to a year, but since I became extremely ill with my heart involved in 2004, I have yet to recover to even a 10th of near normal. I have been under constant and severe stress since that time ...

Anyway, if you do get back, I'd love to hear from you.

Thanks.

Kat
Kat

Glendale, AZ

#97 Oct 18, 2008
One more thing: I've been off and on Valtrex, and only felt a tiny difference after taking it for a couple of weeks for the first time several years ago, in 2002 or 2003, I think. Perhaps the dose wasn't as high as it should have been.

I did feel an immediate difference with the Valcyte but it only lasted three days.

Maybe Valtrex works for some and Valcyte for others, depending on the severity of the condition, the viruses involved and/or the length of time one has lived with these viruses.

All I know is that I don't think I ever had heart trouble until early 2002-2003 when the doctor I was seeing then did my first EKG, finding abnormal results. He found the same in a second EKG, asking me what was wrong with my heart! I told him I didn't know there was anything wrong with it. I had continued trying to be physically active, working out, etc., eating an extremely healthy diet most of my life and between bouts of debilitation/illness, so I figured my heart should be fine. But in 2004, I found myself in the hospital diagnosed with a cardiac arrhythmia I didn't know I had or never had before.

Unfortunately, a medication I take at a very low dose to provide me with "artificial energy" to function minimally, by which I mean remain alive, I am sure has adversely affected my heart. However, I would not have needed the medication had my body been functioning normally or had I been able to spend the time necessary to rest and recover.

I take the medication at such a low dose that it gives me, as I said earlier, enough energy merely to "remain alive", but not energy enough to bathe or brush my teeth daily (if I'm lucky, maybe once a weeek), eat (chewing is tiring and a spoon can feel as if it weighs a ton), prepare meals (I haven't used the stove in years), clean or do much else for myself. When I take too much, I experience severe tachycardia.

I read that the medication, for A.D.D., is often used in those with CFS without permanent damage so I presume the viruses led to my heart trouble.

Since: Nov 08

Argyle, FL

#98 Dec 26, 2008
kris wrote:
I've been on Valcyte for 6 months with no change yet. I'm continuing on it in the hopes it will help as some are responding later.
Has the Valcyte helped at all? Did you have an initial "flu like illness" I did but would need to pay for Rx out of pocket so looking for some validation that it may work.
Ladybug

Scarborough, Canada

#99 Dec 27, 2008
Hi all. Please check out the immunesupport message boards for a lot of information from people on antivirals for CFS.

I have had the disease for over 15 years and have been on antiviral therapy for about a year. Maybe a little improvement so far - not completely sure.

I understand that it can take several years sometimes, depending on how long you have been sick and what other infections you may have.

Sue:)
Susan

United States

#100 Feb 8, 2009
Morgaine wrote:
On the doctor in NY? He was not interested in the Valcyte. Had a change of heart. Dr.Stacy Fischer (Infectious Disease/Immunology) in RI, is waiting for the results of the Montoya study.
Sorry for not getting back to anyone sooner. Forgot that I had even been here? You know how that goes????
One important thing to remember! No sugar of any kind!!!! Virus loves sugar. Honey, fructose, sucrose and all the rest....even fruit must be avoided.
Live as if the grocer did not exist, farm style. Head for the produce, free range chicken, fish, water aisle and then walk out.
Exercise if you can, even just one block if able. And swing the arms to move the lymph if that is all you can manage.
Again, diet is key. On the internet, David Wolfe at Raw Foods has some nice quality green drinks to order. Not pushing a product, just sharing what I prefer.
Probably will go for the Valcyte for a hopeful cure.
Morgaine, Was surprised to see a fellow Rhode Islander on the site. It has been awhile since your post but I am curious to see how you are doing and if you started Valcyte.
BGG

Pleasanton, CA

#101 Feb 13, 2009
kris wrote:
I've been on Valcyte for 6 months with no change yet. I'm continuing on it in the hopes it will help as some are responding later.
Any progress to date?
paul shykora arts

Calgary, Canada

#102 Feb 13, 2009
...VALENTINEs'.......eh.
kpeterson

Wakefield, RI

#103 Mar 5, 2009
Morgaine of RI, What RI doctors can you recommend for my 20-yr-old son who had severe headaches and fatigue perhaps from meningitis requiring hospitalization starting last Aug., got better but never entirely recovered, now a terrible bout diagnosed as mono(including sever sore throat may be strep)basically very weak immune system? He's in college, an athlete but so weakened and sick from all this? Can try Stacey Fischer but anyone else? So hard to get docs in RI to take on patients and help figure out what's causing him to be so sick...any suggestion greatly appreciated
Morgaine wrote:
On the doctor in NY? He was not interested in the Valcyte. Had a change of heart. Dr.Stacy Fischer (Infectious Disease/Immunology) in RI, is waiting for the results of the Montoya study.
Sorry for not getting back to anyone sooner. Forgot that I had even been here? You know how that goes????
One important thing to remember! No sugar of any kind!!!! Virus loves sugar. Honey, fructose, sucrose and all the rest....even fruit must be avoided.
Live as if the grocer did not exist, farm style. Head for the produce, free range chicken, fish, water aisle and then walk out.
Exercise if you can, even just one block if able. And swing the arms to move the lymph if that is all you can manage.
Again, diet is key. On the internet, David Wolfe at Raw Foods has some nice quality green drinks to order. Not pushing a product, just sharing what I prefer.
Probably will go for the Valcyte for a hopeful cure.

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