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 kpeterson@dailynewsgroup.com. <br/>
djsorensen

Granbury, TX

#64 Sep 22, 2007
I have had this disease for 12 years and have just tested positive for ebv, cmv and hv6 as very active and highly likely the source of my cfs. Finally, i have an explanation for my symptoms! It's not all in our heads. Unfortunately, I live in San Luis Opispo and we do not have any help here with Md's who are knowledgable with the new meds. If there is anyone out there who is willing to email any suggestions to help it would be deeply appreciated. please email me at beverly@alldial.com thanks
kris

Hayward, CA

#65 Sep 30, 2007
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.
Mel

Salisbury, Australia

#66 Oct 8, 2007
MeganP wrote:
My name is Megan from Melbourne Australia. I have had CFS for 41/2 years following a bout of Epstein Barr virus so I am very interested in the Valcyte treatment that people are talking about in this group. I really appreciate the information that has been posted by those who have started or completed the Valcyte treatment, particularly since I know many are still very unwell. This represents such hope for me although I am trying not to get too excited.
I am interested to know how people are going, about the the side effects, and also to know how much information Montoya has given about the incedence of subsequent relapse for those people where the drug initially 'worked'.
Also wondering if the Stanford people have given any information on the possible use of Valtrex as opposed to Valcyte in line with the findings of Martin Lerner. It seems strange to me that they don't seem to be acknowledging his earlier findings.
Of note I have read the trial listed at the clinical trials website. In the summary there, compared to earlier media reports, they tend to be playing down the issue about viral onset and are emphasising the high viral titers (although viral onset still appears a criteria for entry). This sent me back to look at the original journal article about the first 12 people treated. Here I noticed, with the exeption of one person, that those with without viral onset for whom the treatment was unsuccessful (3 people) were also the same people who had comparatively low viral titers.
For those who are interested - Clinical trials website:
http://clinicaltrials.gov/ct/gui/show/NCT0047...


Hi, I'm Mel from Adelaide and have had CFS onset from stomach virus, but blood tests show I have had EBV at some point too.
Does anyone know of anyone in Australia who has been prescribed with VALCYTE for cfs and if so< what dosage< which doctor??
Mel

Salisbury, Australia

#67 Oct 8, 2007
Hi, I'm Mel from Adelaide, Australia and have had CFS for five years onset from stomach virus, but blood tests show I have had EBV at some point too.
Does anyone know of anyone in Australia who has been prescribed with VALCYTE for CFS and if so what dosage and what doctor??
Morgaine

Warwick, RI

#68 Nov 6, 2007
Nancy wrote:
<quoted text>
Hi Sara,
Your concern was discussed with me by Dr. Montoya. He stated that at very high doses Valcyte causes cancer in mice, but the dose that is being prescribed to CFS patients is no higher than the dosage being given to transplant patients or other users of this medication. So, there shouldn't be cause for alarm.
In response to "Cause For Alarm?" I do not have the answers, but the doctor that I saw, works with Kidney patients and told me that she will wait to see the results of the Montoya study. I was told by her, that the drug can have very serious and dangerous side effects. Not one to toy with. I am waiting and considering.
Morgaine

Warwick, RI

#69 Nov 6, 2007
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.
Megan

Australia

#70 Nov 6, 2007
Mel,

I am not aware of any doctor who has yet prescribed Valcyte for anyone in Melbourne but am aware of a couple who are considering doing so but they are reluctant. I suggest you try and get tested for your titer levels before requesting Valcyte as it is a serious drug and a 6 month course costs about $15,000 Australian dollars (not on PBS). A guide your doctor can use for testing is on the Stanford trial website at http://www.vicd.info/testing.html . I am aware that testing for HHV6 and the EBV early antigen can be done using the IFA methodology at the Victorian Infectious Diseases Reference Laboratory (VIDRL) in Melbourne. You would need to get your doctor to request that the test be sent there and also to request that they report back the titer values otherwise they won't give you the required information. VIDRL can also test for the other two EBV antigens but using a different methodology which makes it difficult to compare to the Stanford reference ranges. Another good source of information on all this is the HHV6 Foundation at http://www.hhv-6foundation.org/ . They also have some good chat sites with lots of information.

My email address is vascopyjama@hotmail.com if you want to talk to me more about it.

Cheers,
Megan.
Morgaine

Warwick, RI

#71 Nov 12, 2007
Just contacted Roche for the Valcyte trial results and learned that the study was completed at the end of August 2007. Was too tired to read the results. Left a message with Dr. Stacy Fischer in RI and hoping to hear from her soon. If she is not willing to work with me, now that she will have the results......I will again need to try to locate someone nearby. If I get lucky all....will keep everyone posted.
Carol Crane

United States

#72 Nov 21, 2007
[Hi,
I am going to Holtorf Medical Group in Torrance, Ca. I had no luck with doctors in regular Western Area, it seems black mold patients they do not know how to treat. My lawyers sent me to a mold doctor and started me on the right track. Then I could not take thyroid medication I flew to Holtorf and love their treatment plan. My doctors up here look the other way and I found homo-pathic doctor who is willing to listen and help.I saw your article with Holtorf Group and wanted to find out how are you doing. It has been bumpy for me but have made major improvements. My biggest thing is my lawyer who cancelled my trail twice and I invested over $100,000 is trying to get out. Appparently, the lawyer I had in the firm left in the middle of night. No one told me and now I have to face judge with him because he wants to leave after he misled me and I had companys ready to fund me to trail.. It is sad that insurance that covers our home does not help us when we need them and people with money win even though they lied and cut corners when cleaning my condo or home in Tahoe.(Found out in their depositions which they had to be supena because they kept cancelling) I have been sick for years from mold poisoning and thank-god holtorf treats sick building syndrome. Anyway, I am grateful to have found Holtorf Clinic and hoping for a good recovery. Please tell me if you have improve etc. Thank-you for your attention in this matter. Would it be nice to educate doctors here about cogulation defect, thyroid whic, hormones etc. Things regular docotrs do not address, we need a clinic up here. I went to Stanford and left in tears and just saw another specialist and left in tears, they are not willing to look past the paper-work etc. so Holtorf Group for me
Carol
12yrs and counting

Fort Worth, TX

#73 Nov 28, 2007
Valcyte is a very strong drug -- it does mitigate the CMV and HHV6 well.

Breaking the viral chain with Valtrex on EBV components is much safer than using Valcyte.

A high percentage of sufferers wll improve with Valtrex treatment.

At any rate -- it is not necessary to use these high dosages of the potent Valcyte in long term sufferers (a great deal of the damage will take a long time to heal) the idea is to dial back viral load and activity. This can be done with much lower dosages over a long period of time.

For the newly ill -- the high dosage may well prevent damage and nearly wipe out the viral interaction.

My clinical data is only supported by my own personal use and blood tests. Nevertheless these are my findings.
Katie

Auburn, CA

#74 Jan 13, 2008
Are there ever going to be any results from the Stanford Montoya trials????
Nancy

United States

#75 Jan 28, 2008
jeff byrnes wrote:
<quoted text>
can you tell me how you are doing now? i have had cfs for 10 years and will probably be on valcyte in a month or two and i am hoping to see if it really works
Dear Jeff, I started taking Valcyte on Dec. 12, 07. I took 1800 mgs for 10 days, then backed to 450 2x/day. In early January, I was able to become much more active - I've been bed-ridden for the past 2 years - have had CFIDS for 20 years. Yesterday I jogged 4 miles, something I won't do on a regular basis until I have more treatment behind me. There's no question that Valcyte has made a huge difference for me. There's hope.
jeff byrnes

Freehold, NJ

#76 Feb 11, 2008
thank you
STARBUCKS

Fremont, CA

#77 Feb 11, 2008
Now with more locations than ever, Starbucks is keeping Americans on the move! Feeling sluggish? Come in and try our new line of espressos.
Terrie

Gravesend, UK

#78 Feb 17, 2008
Katie wrote:
Are there ever going to be any results from the Stanford Montoya trials????
Hello Katie, have you managed to find any results from those trials yet? I too have been searching but can't find them yet. Terrie from England
MARY JEAN OLEARY

Portland, OR

#79 Mar 7, 2008
i am currently taking valcyte. i'm in my 19th week. it has been hell with no improvement yet. i have been very ill for over 22 years nonstop. so wish me luck. i am desperate.U
Carolyn H

United States

#80 Mar 13, 2008
Hi,
to Katie in Auburn and Terrie in Chelmsford, UK, and anyone else interested in this : I am in the Stanford Valcyte clinical trial, I finished the medication two months ago, but did not feel better. I think I was on the drug but of course not positive until the results are revealed. The date they will reveal results to the patient group is going to be April 9 (2008). And then I expect it will take a while after that to officially write up and publish the results. I have been sick with CFS for about 18 years, and live near stanford/palo alto.
Nancy in Palo alto: if you get back to this page sometime, I would like to talk to you. I'm at parkerjj44@yahoo.com
thanks
Leah

United States

#81 Mar 15, 2008
I totally recommend the Holtorf Medical Group in Torrance, CA. They have answers!!
Graham

Santa Clara, CA

#82 Mar 27, 2008
I may have been suffering chronic fatigue for the past 2 1/2 years. I say "may" because I have not been able to get any doctor to confer a diagnosis. The only diagnosis I've gotten is an anxiety disorder. Slowly and with some setbacks, I have been getting better but still have brain fog/dizziness, sore or cold feeling extremities even though it is nice and warm and sore throat and occasional fungal infections. I take Elavil for sleep and that seems to help a lot. Ever since I got my sleep better, I have overall felt a bit better. Does those symptoms sound familiar to anyone?

Anyway, the docs at Kaiser have ruled out an immense number of diseases such as HIV, Diabetes, Celiac, MS, rheumatoid arthritis, fibromyalgia and more. However, whenever I bring up the idea that I might have CFS they just shrug and tell me they don't know much about it. I am REALLY looking forward to the results of Dr Montoya's Valcyte trial. If that is successful maybe at least I can get a doctor to just try it out on me.
El Buey

United States

#83 Mar 27, 2008
Boy, here's the cure: Get up off your lazy asses. We've come up with just about every disease for anything....pure crap.

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