Chronic Fatigue Syndrome Blog

Comment by john arguimbau

November 14, 2007 @ 1:06 pm

I AM AGE 68.I contracted Viral CFIDS in 1977. Between 1977 and 1999 I lost 2 years of work due to this disease.I was given Zanax for the 1977 event which lasted 6 mos.In 1979 I had “the stomach virus from hell” that lasted 10 days In 1982-1984 I had Mono for 2 years. At that point I decided to take an easy 40 hr.job and rest weekends.From 1986 -1999 I had 2 reactivations.Luckly,my boss understood my problem. Thus he let me take about 2 weeks off each time. Thus I recovered each time.That was not the case in Nov.99 when it was either “return or be fired.” I returned for a week,then went into total collapse where I have been since.I WANT TO TRY VALCYTE ASAP but do not know if available to Drs.etc. Any info will be appreciated. I live in Southern CA-Temecula [1 hr from SanDiego-2hrs of torture to L.A.]JLAFEA@HOTMAIL.COM

Comment by admin

November 14, 2007 @ 2:30 pm

i personally dont know of any doctors that perscribe valcyte for cfs. You might be able to convice a doctor if you show them the studies, but i dont have any name that i can give you.
Here is his profile at stanford:
http://med.stanford.edu/profiles/Jose_Montoya/
mayebe you could try to contact him and ask if he is familiar with anyone in your area

Comment by Sam

January 6, 2008 @ 2:42 pm

Hunter-Hopkins Center in Charlotte, NC, prescribes Valcyte, plus, it might be easier to get elsewhere, now that it is advertised on TV for Fibromyalgia.

Comment by Vanessa

January 11, 2008 @ 10:23 pm

Go to fibroandfatigue.com and find the clinic nearest to you. I go to the clinic in Nevada, and my Dr. will perscribe this if your bloodwork shows that you need it. Dont give up, you are close! xo Vanessa

Comment by Linda Tannenbaum

February 6, 2008 @ 4:07 pm

Dear John,
My daugther just started on Valcyte for CFS two weeks ago prescribed by Dr Daniel Peterson in Incline Village, Lake Tahoe area. We live in So Cal and have to fly into Reno and then drive to drive to Tahoe. His number is (775) 832-0989. Best of luck.Linda

Comment by Mark

March 10, 2008 @ 6:24 pm

I just started my treatment of Valcyte today. I’ve had chronic fatigue since October 05 after contracting the flu so I’m really hoping that this treatment is the answer I’m looking for. The worst part is I’m 22 years old and I feel like the best part of my life is slipping away.

Anyway as far as getting the treatment, I went to an infectious disease specialist, and told her about the study. She was a little baffled at first as she never heard of anyone on Valcyte for 6 months but after showing her the study online she became a little more comfortable with the idea. I was then sent in for bloodwork and was given a perscription for Valcyte shortly after that.

The moral of the story, seee an infectious disease specialist, show them the study, and get sent to do bloodwork. I’ve found that doctors are usually more then willing to let patients try treatments as long as theres some logic behind it.

Comment by Melissa

March 25, 2008 @ 11:33 am

Dear John,

My name is Melissa. I am 43 years old and have been sick since 2000-2001. I reside in another state but read your post under chronic fatigue treatment website. I had to try to email you with what I know as factual.

I recently read your post regarding Valcyte as treatment for CFS.

There are a couple of things I will tap in to for you.

#1: I began research for treatment of my CFS and FM diagnosis after I had found out in 2002 I had had infectious mono which had been chronic for almost a two year period also. During my studies, I was contacted by Dr. Dharham Ablashi, Founder and President of the Herpes Foundation, Co-Discoverer of HHV-6 virus also a veteran of The Cancer Research Institute in New York. Between him and Kristin Loomis, the now HHV-6 Foundation President, I ended up seeing an infectious disease specialist in my area. Due to high titers of several herpetic infections in my spinal fluid (which isn’t normally ‘normal’ per se), I was put on 1,000 – 3,000 mg of Valcyclovir per day; depending on the day. It had to be strong enough to cross the bbb (blood brain barrier). Since then, Valcyte was used in a double blind study by Dr. Montoya @ Stanford University in 2007.

I showed my doctor more cutting edge vs. what I began three years ago with the Valcyclovir treatment. With what I showed him last week, he agreed to allow me to begin treatment next week for the next six months. He isn’t real convinced it will work and I might need to continue after treatment and go back on the other on a daily basis but we’ll see (I believe that is because mine crossed the blood barrier and the others treated had not).

So, here is my advice for you: above all, continue being proactive – no one else will do it for you.

The options I have below are not necessarily in an “order” basis:

Option 1: Find an infectious disease specialist. It would be best to get a referral from your primary care doctor; or, whoever you may have seen last. Take him any and all papers you have relating to the use of Valcyte for six months in the treatment of CFS (aka chronic EBV – which is the herpes virus that causes infectious mono). If you need help finding the info, let me know; I’ll be happy to assist.

Option 2: When I first began looking for help and Kristin Loomis contacted me, she did tell me I might consider seeing Dr. Dan in Incline Village. This is mentioned by another person on the website, Linda Tannenbaum; so, I know he’s right on the money. Dr. Peterson’s number is: (775) 832-0989. However, this is near Lake Tahoe, so, very far from you. That is the reason I didn’t go down to him.

Option 3: There is a medical center in Southern California that has used Valcyte for CFS treatment simultaneous with other vehicles. Since the FDA released Valcyte four years ago, this doctor began using it even prior to the government granted double blind study done @ Stanford last year.

The center is in Torrance, California. How far is that from Temecula? I used to live in Canoga Park actually but can’t remember where everything is!

The name of the center is: Holtorf Medical Group
Doctor: Dr. Kent Holtorf
Phone: (310)375-2705

Here is small exerpt I took from their site:
(Their web address is: http://www.holtorfmed.com)
(Note: the exerpt below, I wanted you to know this, John, the double-blind clinical trial was done by Dr. Montoya, it only happened as it was actually backed and endorsed by Dr. Ablashi and Kristin Loomis; both of whom contacted me in 2004-2005; they were compassionate enough to answer an email I had sent to Dr. Ablashi in 2004 out of sheer desperation and then he called me from New Jersey at the time and then Kristin contacted me from Santa Barbara. (The information I found, I actually found several years ago and it is just now coming to light in what I will call the “real” world). It’s just so cutting edge and most people aren’t comfortable with things that are cutting edge. How else would we know if it weren’t for people like the ones I have worked with?

Montoya et al at Stanford University treated chronic fatigue syndrome patients with 6 months of valganciclovir (Valcyte) if they had elevated IgG tests for HHV-6 and EBV and had at least 4 of the following symptoms: impaired cognitive functioning, slowed processing speed, sleep disturbance, short-term memory deficit, fatigue and symptoms consistent with depression. Nine of the twelve treated patients (75%) “experienced near resolution of their symptoms, allowing them all to return to the workforce or full time activities.” In the nine patients with a symptomatic response to treatment, EBV VCA IgG and HHV-6 IgG titers significantly dropped. (21)
We have been using Valcyte in our center for the treatment of chronic fatigue syndrome for over 4 years and have found it to be effective, especially in patients with the flowing: flu-like symptoms or symptoms started with a flu-like illness; elevated IgG or EA against Epstein bar virus, cytomegalovirus and/or HHV-6; low natural killer cell activity; high RNAse-L activity; high ACE (> 35); coagulation activation; high tumor necrosis factor (TNF); low melanocyte stimulation hormone (MSH); high interleukin-6 (IL-6); low WBC; increased 1-25 vitamin D/25 vitamin D ratio and/or elevated or decreased total IgA, IgM or IgG levels.

This study contributes more confirmatory evidence that IgM antibodies are not typically elevated in chronic reactivating infections so most patients are incorrectly told they do not have an active infection based on such testing. This study also demonstrated the lack of sensitivity of standard PCR testing.

Anyway, John, I wished I still lived in So Cal; I’d probably go to the outfit in Torrance. If the Valcyte doesn’t kick this, I’ll be flying down there as soon as I am able. So, keep your fingers and toes crossed. It’s been a long, long road but hang tough; most people do whatever is comfortable to them instead of trying to do more to make this world a better place.

Hang in their buddy! Let me know if there is anything else I can help you answer. If you do need to contact me, please do so at the following address: girlsunshyne@yahoo.com.

Melissa P.

Comment by Melissa

March 25, 2008 @ 11:43 am

Hi, Linda - If you read this, I am wondering: how is your daughter doing? How is the Valcyte working for her? What dose does she take? Have you noticed her feeling better? I’m a little nervous to start taking it next week but I’m sure w/what I have been doing, this will be a piece of cake! Well, I hope things are working for her. I don’t know your daughter’s age but hopefully she’ll be feeling better soon. Melissa

Comment by Ron

March 30, 2008 @ 9:20 am

My symptoms began in late 2004 after a prolonged bout with a “flu-like illness”. Among many other MD’s, I visited an infectious disease specialist in the summer of 2007. He did not believe a virus could remain in my system for that long to cause my symptoms of leg fatigue (aesthenia) and tingling in my extremities. He suggested I see a neurologist. I eventually was tested by a neurologist (including spinal MRI) who was unable to detect a neurological problem. My point is, not all infectious disease MD’s have bought into CFS, this one certainly has not.

BTW, I am being treated for CFS by Dr. Salvato here in Houston. I have been on glutathione injections since December of 2006 and Valcyte since May 2007.

Comment by Tammy Clark

May 25, 2008 @ 2:28 am

I began taking 1800 mg of valcyte a day one week ago.
I am following Dr. Montoya’s protocol. I was diagnosed with CFS 2 years ago and was given aniti-depressants, anti-anxities, and again. My problems began in 2001 after a major surgery. I have seen just about every kind of doctor their is trying to get answers. Having had MRI’s, CT scans, and everything else. All the doctors basically said, your just depressed. Yes, I was depressed. I was going down hill fast and the fatigue was getting worse. No one would listen or take time to really take me serious. Then I contacted a doctor in Farmington, Utah. Dr. John William Whitaker. I found him through fibroandfatigue.com. He did extensive blood work and found that I have had active
CMV, HHV-6, Thyroid problems, insulin problems amongst others. He feels confidant that the valcyte will work along with other medications that I am taking to treat other symptoms and Ultraceuticals that help give me energy and build my immune system.
I was warned that I will feel worse before I get better. Has anyone completed a 3-6 month treatment?
If you have, how was it. Did you have a period of bad time before you had better times. Also, do you think it cured or at least increased your quality of life. I had to quit my job last year after pushing it until I collapsed. I am not functioning at all right now and I used to go on 5-6 hours sleep a night
and go none stop while I was awake. Now my mind thinks of everything I need to get done and my body
won’t move to do it. I am trying to be positive and
optimistic, so if any of you have success stories with
this drug for these conditions, please let me know.
I could use the encouragement. Thank You, T.C.

Comment by Donna C.

May 31, 2008 @ 12:08 pm

Dr. A. Martin Lerner in the Detroit area has been treating people with anti-virals for over a decade and has helped hundreds of patients greatly improve their lives. He uses more than one anti-viral depending on the virus involved. He is an infectious disease specialist and has patents on testing; he was in fact his first patient himself. If you are in need in the east, he might be a good try. He is getting older, so don’t delay. I fly to Detroit to see him - he is an amazing man, and the nurses tell me EVERYONE who does what he asks of them gets substantially better. It’s not been an easy road for me, but I’ve been sick for a VERY very long time, so I can be patient. Don’t give up!!! Good things are on the way. Donna

Comment by Kathy

September 14, 2008 @ 7:33 am

Tammy, you and I are twins. Same symptoms, same everything. We need to talk. I am treating with Dr. Lerner and just started the Valcyte. Please contact me.

Kathy at abourezk@wideopenwest.com

Comment by Della Grabow

October 22, 2008 @ 10:48 pm

Hello Tammy Clark,

Your email caught my eye. I’ve had CFS for 16 years and just started Valcyte seven weeks ago. While there have been days I thought I was better, as soon as I tapped into it with increased activity I started feeling sick again. How are you doing five months down the road now? Has it been true that you will feel worse before you feel better?

Thanks for responding.

Comment by Jean

November 11, 2008 @ 9:25 pm

I’ve had ME-CFS since 1958. I started Valcyte in June. The summer was pretty rugged, but as of a couple of weeks ago, I have felt more stamina & am very pleased. I’ve been working with Derek Enlander in NYC; he is very accommodating. I do recommend him. Oh. I apparently had only 1/4 the average HHV6 titres as those in the Montoya trials. I am by no means ready to go back to work, but as I say there is improvement. I was quite ill before, pretty much housebound, unable to drive 1/2 hour without relapse. Shopping even in convenience stores was hit or miss; some days I could some I could not. I can pretty well count on getting prescriptions now even if I have to get out of the car.

Comment by Jean

November 11, 2008 @ 9:27 pm

Oh just looked above. If the patient meets criteria established through tests Dr Enlander will prescribe valcyte. Do check his website.

Comment by Shirley Poncini

November 15, 2008 @ 6:40 pm

WOW! I knew I wasn’t alone but I had no idea this space was here.

I’ve tried to get an appointment with Dr. Montoya. There is a waiting list and they will call when there is an appointment.

I have had CFIDS since 1992. I am in a major relaspe. I am worse than when I was first diagnoised. I had read about Valcyte and thought it wasn’t available until now,(Nov. 2008). I was wrong. It has been around for awhile.

I am also interested in how everyone is doing on this drug. I read the side affects and became alarmed.

Now that there are people taking this already, I feel more safe.

Thanks also for the info on diets. I’ve gained a great deal of weight and nothing I’ve tried seem to make a difference.

Good luck to all of us on this journey.