When chronic fatigue syndrome was called Epstein-Barr, it was believed to be caused by the epstein barr virus which is in the herpes virus family, and causes mononucleosis. Researchers have moved on to other theories since then, but a recent study may cause them to think otherwise. This year a study treated CFS patients with the anti-viral drug Valcyte. A doctor named Jose Montoya, that was treating chronic fatigue patients out of Stanford University,noticed that one of his patients had high levels of circulating antibodies to 3 different herpes viruses. Early in 2007 he completed a study of 25 of his most severe CFS patients. He reported that there was significant improvement in 21 of the 25 patients. 20 of the 21 patients that had a flu-like illness onset had the most significant improvements.
Many of the patients that were treated had been sick for over a decade, and were severely disabled. Some of them have actually resumed work and excersice. Dr. Montoya believes that this treatment may help a certain subset of CFS patients, but a significant portion of the population may make up this subset. Viral infection has often been a suspect in CFS patients, but if this new study comes out with a positive result it might be a breathrough.
Currently Dr. Montoya is conducting a study with 100 chronic fatigue syndrome patients. He has a website that discusses his clinical trial here. I believe that the trial has already begun but there may be updates there in the future. Dr. Montoya recieved a 1.3 million dollar grant from Roche Pharmaceuticals to conduct his research and if this 2nd, larger clinical trial has similar results as the first, then there may be a new effective treatment for CFS.
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
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
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.
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
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
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.
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.
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
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.
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.
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
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
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.
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.
Oh just looked above. If the patient meets criteria established through tests Dr Enlander will prescribe valcyte. Do check his website.
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.
Hi There. I am interested to hear how your daughter is doing Linda? And….to the young adults that wrote here…you are NOT alone……i suspect millions are going through this around the World. My son Blake (20 years old) has been bedridden on/off since the summer of 2003. All sports stopped and symptoms started. We all know what they are so I will not go into them. However, I will mention that in addition to going from an extreme athlete and top student to being bedridden, he had remarkable cognitive decline. He can no longer read or put words together well. 5 years and 20+ doctors/specialists later, he was diagnosed in September of 2008 with HHV-6 (only at 3X positivity), EBV (too migh to measure) and CFIDS all of which have caused malnourishment as he has lost 40lbs and no longer absorbs nutruients when he eats. He started on Valcyte 16 days ago at 900 mg, plus started an arsenol of vitamins and nutrient supplements 8 weeks ago to begin treatment. 2nd day on Valcyte, he was completely bedridden, too weak to get out of bed. Day #14, he showed more alertness cognitively, a twitch of hope. He seemed “more alert”. Day #16 he made it from his bed to the couch. This morning, he woke early and was able to grab his own fruit and vitamins. I tried to see Dr. Dan in Incline….but his receptionist said there could be a year wait. We do not have that time to wait with Blake, it is apparent this is becoming critical. we were referred to a doctor (through John Hopkins) in the San Diego area that handles Chronic Fatigue cases…..we drive down from the Oregon/California border to the nearest airport(5 hours)…hop a plane to San Diego monthly. Dr. Dan would have been awesome….he is a 5 hour drive from us. However, this doctor is amazing and saved Blakes’ life. I would love to hear from Linda on how her daughter is doing……amices92121@mypacks.net
Hi I am physician and have a few patients with CFS. One in particular really seems to fit into the virally infected category and I have been trying to treat him unsuccessfully with both allopathic and naturapathic medicines for years.
I am planning on starting him on a Valcyte trial beginning next month.
I would certainly be interested to hear of any other success stories, or failures for that matter, of others who have tried Valcyte for CFS. I am particulary interested in anecdotes of people who have been taking Valcyte for longer periods of time and what has happened in those who have discontinued it.
Thanks,
Justin Davis, MD
Hello Dr. Davis,
I’ve been taking Valcyte for three and a half months now, per Dr. Montoya’s study. Objectively, my antibody titers to the EBV have decreased from >5.0 to now 3.71. Subjectively, I feel I’m definitely turning a corner with both increased physical and mental energy and decreased flu-like symptoms. I still experience a degree of post-exertional fatigue with aerobic exercise but at least I’m able to do some aerobic exercise! I’m tolerating walking but tried to walk/run and unfortunately got sick(swollen tonsil,fatigue, etc.)the next day. However, if and when I do get sick I seem to rebound faster. My physician is prescribing a full six months of Valcyte for me and will retest my blood again at the six month mark. Hope this helps you.
I just came across Valcyte while doing research for antiviral drugs for CFS. I am 18 years old and was diagnoised with mono in July. It has been more than 6 months and my fatigue and flu like symptoms have not improved. I have had every test under the sun run and nobody can still figure out why my fatigue is so debilitaing. I can hardly get out of bed and barley eat at all. I go back for a follow up with my MD on Monday. He has not yet diagnoised me with CFS but does belive that do have it. Has anybody had any succesfull results with this drug? Will a regular MD perscribe this? I am so desperate for answers. Thank you and God Bless.
jacksonrayborn@yahoo.com
I just finished 6 months on Valcyte after 4 years of CFS (following mono) with elevated EBV and HHV-6 titers. I have been completely restored to normal health! I had previously tried other anti-virals and immune-boosting meds, as well as all sorts of alternative supplements, etc. and nothing worked. Valcyte worked, though I have yet to see if this improvement will be permanent. It is a serious drug, but if EBV caused your initial illness you might want to consider it. I have posted my story on the HHV-6 society’s patient forum (http://hhv6foundation.proboards101.com/index.cgi) which is an active patient discussion about Valcyte.
COMMENTS BY MARY PAT
Jan 10 2009
I have just seen Dr. Lerner in Detroit. I live in Chicago. Haven’t started the Valtrex yet but will write back when I have news but he did say that I have a very good prognosis because I just have EBV. Apparently multiple viruses are more difficult to treat. However from the last post this is not always true. Anyway, just wondered if there is anyone else going from Chicago that would be interested in sharing rides. My husband drives me. You can e-mail me at mpeitzen@comcast.net. Thanks
hi all. i have had CFS for 16 yrs and have been on valcyte for 18 months for HHV6. i have also been on valtrex for 10 months for EBV.
my illness started after mono.
i improved about 40% but then declined rapidly. the doctor is trying to figure out why.
i see dr. lerner in MI and post regularly on the immunesupport message boards.
good luck
sue
Hi- I’ve just found this site-Wonderful! Thank you to each and every one who has shared… I am 40, have had cfs for nearly 15 years. I’ve been all over the map, from completely bedridden to working nearly full time. I am now suffering a relapse and looking in to specialists. It’s time to get serious! It’s a bit overwhelming to know that different specialists deal with this illness from totally opposite angles. Right now, what makes sense is either valcyte or the kutapressin ‘cocktail’ from Dr. Enlander. I am in Minnesota and know of NO physicians here, so hope my internist will work with whoever I see. Would greatly appreciate any experience with Dr. Enlander, and success or failure with his methods…… cisasnaps @ hotmail.com
Hi, my daughter is 17 and has struggled with chronic fatigue after catching mono at her elementary school in 5th grade, over 6 years ago. We have been through many doctors, tests, medicines and nothing has helped. She has been diagnosed with fibromyalgia and neurally mediated hypotension also. I read about Dr. Montoya and Dr. Lerner and have taken her to a (different) infectious disease specialist and given him the information about them. We are waiting for her blood work to come back now.
I am interested to hear any more reports of the effectiveness people have experienced with anti-virals. Thanks.
I am a 45 year old RN. I collapsed on the job 2 years ago and never got well. I was going down hill two years before that. They gave me a pacemaker for cardiovascular collapse and vasopressor medications to increase my blood pressure. Never got well. Then I went to Holtorf Medical center. They helped me quite a bit. I had two doctors that were kind and understanding and one that ignores me and doesnt believe anything I tell him about my body. I take my vital signs for him and he even discards that. We got off on the wrong foot and i cant save our relationship. He refused to fill out my diasbility papers and just does not treat me humaine. I have just started Valcyte for CMV and HSV-6 infections that did not respond to 18 months of other treatment. I did however improve the Epstine barr titer. I only have a two month perscription for Valcyte. Is that enough? I do feel horrible. I did before i started it though. I think the virus is to blame not the week long treatment of valcyte. Any ideas? Anyone have luck with such a short treatment?
Would love to hear-Thanks : )
I have had CFS since the fall of 2003 and suffered greatly during the past 6 years. Some days are better than others however there are times when I experience an “episode” and it can take me down for weeks. I just recently started seeing Dr. Lerner in Beverly Hills, Michigan. He is the most empathetic, compassionate physician (I call him a healer) I have ever known. I began taking Valcyte a week ago and have yet to experience any effects,although he informed me that it would not happen until after two weeks of treatment. I am hopeful for the first time in 6 years. I understand that getting through the treatment may be rough, but at least there is a light at the end of the tunnel where before there was none. If anyone is further along in their Valcyte treatment please let me know what your experience is/was like.
Thank you.
I’m trying to reach Kathy Loomis as per the advice of my neurologist in Santa Barbara, Dr. Victor Rosenfeld. Can you help me?
Alison Allan
kristin_loomis@hhv-6foundation.org
Valtrex was effective for my spouse (no HHV-6, only EBV). I have EBV and HHV-6, hope to start vistide or valcyte soon.
(Oh, and yes–CFS apparently is an STD.) ; )
i dont know about that. i got it through saliva.
I first went to see Dr. Montoya in 2007. I was not excepted in the trial due to my age -69 years old- and at that time ill with ME/CFS starting in 1987 and did see Dr. M as a private patience. I have EBV, HHV6, CMV. I did 6 months of hell on Valcyte and did get some cognitive improvement for which I am thankful. It has become very hard to see Dr. Montoya now. I was seeing him every 3 months now I have an appointment at the end of this month if it is not changed again. The trial results are still not out and he told me in April of ‘08 that they would be in a month or two. I like him very much but am dissapointed by the current situation and have even heard that he may be closing down the ME/CFS clinic. Dr. Peterson is not even returing e-mails or phone calls. My virus did go down on Valcyte and I was then put on valtrex and the side effects were to much for me so Dr. M. put me on acyclovier. I had hear the Dr. P. says that is not any better that a placibo.
Hi Joyce,
I’m also a patient of Dr. Montoya. I have had CFS for 16 months now caused by EBV and HSV-1. I started seeing Dr. Montoya in Oct 08.
I took acyclovir for 6 months and saw no improvement. I just started on Valtrex 3 weeks ago and haven’t noticed improvement.
I wonder how long it usually took for you to notice improvements by the new drugs you tried.
I was shocked to read that Dr. Montoya may be closing down the clinic – is it really true? I really hope this is not happening as I wouldn’t know which doctor to turn to next in this area.
Thanks very much!
Iris
I had CFS/EBV for about four years prior to getting on Valcyte. I was given the exact same dosage as in the Montoya study. My results were great. I went back to running one or more hours 4 x a week. My life is on MUCH better. I am currently having a flair up, however it is NOTHING compared to the hell we all have cong through. I see a Dr Robert Katz of Rush Medical Center, Chicago Il. His office # 1.312.226.8228
Bst of Luck to all
Wow all those stories are so encouraging. I was infected 11 years ago from nowhere really and had to get a long pause from medschool despite being a very promising student (4th year at the age of 18..too bad my choice to go with a girl i didnt know at my 19th birthday brought around a viral infection that cost me so much almost my whole life- definately my family support and understanding – they think i am insane since no one of the 80 or more doctors and 3 hospitals i visited in them 10 years knew of Viral infections lasting that long apart from HIV and hepatitis or HTLV), and a lot lot more )
I was so sure it was this virus that messed me up i went alone into a famous immunology department and told them i am so sick that i feel i have HIV or something similar (only symptom i didnt have was the night sweats and fever). They measured my CD4 count and where shocked to find out how low they were and then they started believing me. Yet antibodies to HIV and PCR where negative so they were so confused and dismissed it as stress or some strange infectious agent that will go away. Well it didnt, i had to drop my studies and try to survive from the fatigue and IBS and cognitive problems that would follow. 3 years later and mostly in bed and depressed i was 50% better and started doing some sports but couldnt study like before, had no higher intellectual abilities any more, got mentally stressed and tired. Soon too much exercise caused me overtraining and adrenal issues (offcourse with 1 or 2 viruses in my body that would be the most possible end result) I had to stay in bed another year with exruciating pains and headaches and insomnia then a terrible antibiotic caused more problems for me and the one year was made into 2 and a half in bed. The last 10 years of my life i was 5 years in bed. Now i had another infection out of nowhere (probably kissed the wrong girl again) and this reactivated the CMV (and possibly HHV6 i have but not diagnosed).
I am in great fatigue now, great intestinal bloating and constipation and have very bad concentration and brain fog.
Thanx to docs that never listened i could have been only suffering with the infections now and not have a bunch of hormonal and other drug side effect problems. Now i have to run a long way fix my hormones coz i have so little adrenal output and gonadal is very limited too, then try to find some proper doctor to treat me with valcyte or some other antiviral. I cant wait to start studying again after so many years. I only care about finishing my school after so much time of being laughed at and considered as some maniodepressive person, i was afraid of telling my friends i have a long lasting viral infection (who would talk to me after that or even believe me when the best doctors i went wouldnt)
One question. What is the best lab to test for HHV6, CMV and so on. I only have found IgG of CMV quite high(47 while upper normal levels are 5-sorry i cant remember the units right now)
HHV6 testing labs are hard to find in my country
I am wondering if anyone knows a doctor in Southern California (we live in Wrightwood, not too far from San Bernardino or Ontario) that uses Valcyte.
Thanks,
Liz
It is nice to see people share their experiences. I too was prescribed Valcyte in 2007 (I think) I was being treated at a fibro-fatigue clinic outside of Seattle. My doctor said my numbers for HHV6 and ESBV as well as the Igg whatever #’s were the highest she has ever seen. After 2 weeks on the medication my bloodwork showed my liver did not tolerate it.
I applied for the 2nd trial with the Valcyte w/Dr. Montoya and fit the criteria except I had to live in the Bay area. I was almost willing to move!
At this point I feel like trying the prescription again on my own. Other doctors in my area do not even acknowledge the results of the labs I have. Even the infectious. Specialist!!!! My original doctor is on her own and does not take insurance so I can no longer even make an appointment without cash.
My husband who has been great is starting to resent me for the financial burden placed soley on him. Not to mention a wife who is in bed all of the time. I’m not alone in this, I know, but I sure feel like it lately.
Feeling hopeless.
Hi I posted awhile back before I started Valtrex with DrLerner. Had a bad initial reaction Then began making progress. At 6 months I overdid it by going out one night when I was already verry tired and after 2 months have not recovered. I am seeing a doctor in chicago and Dr Lerner soon but I am very disappointed at present. Has anyone had this happen and then gotten btter? Thanks MP
MP,
I’m also taking Valtrex for my CFS. I started at a lower dose in July of this year (500 mg, 3x a day) and increased to 1g (3x a day) in October but still haven’t noticed improvement. I think I might have felt worse overall after taking Valtrex. Dr. Lerner’s studies on Valtrex showed that patients had decreased levels of EBV VCA after taking Valtrex, but my values haven’t changed.
1. Were you diagnosed with EBV only?
2. When you were taking Valtrex, were you working and if so, how many hours a week?
3. When you felt like it was making progress, did you feel like you completely recovered?
I would really appreciate your responses, as I am quite frustrated and getting a bit scared that I won’t recover… Thanks in advance.
Good luck and take care,
Iris
This has to be one of the most devasting and frustrating diseases in the world. I’ve been ill for about 12 years – the last 3.5 under Dr. Lerners care. I’ve taken valtrex for 3 years and Valcyte for 4.5 months. I feel almost as bad as I ever felt.
Dr. Lerner (Beverly Hills) is a wonderful and compassionate physician who probably knows as much about this disease as anyone, but I don’t think anyone has a true understanding of its complexity and individualized expression. I’m hoping for some new breakthrough from the XMRV study.
My best advice is to get treated with anti-virals as soon as you can and be ready to give up any plans you had for the next few years in order to rest and get well. Getting fatigued AT ALL will set you back.
Good luck to all fellow sufferers! Believe in the light at the end of the tunnel. it’s drawing closer.
Gosh, I am reading my life here. I am a 39 year old female. Got momo my first time in my early 20’s, have had it at least three times since. I also have cmv, herpes, all of it in my blood tests. I’ve also been diagnosed with a primary immune deficiency and have to do two weekly infusions at home to get my immunoglobulins back up. My questions to you are: What tests should I have my doctor order? From what I’ve been researching Valtrex is out of the question, I would have to go the Valcyte route. How hard is it on you? I am still working full time as a teacher, in order basically cause I’m a fighter like no other, have the best spouse, and I NEED my health insurance.
Since I’m right near Tahoe I think I will try to see Dr. Daniel Peterson in Incline Village. I’m thinking since it is such a harsh drug that I should start in summer ???? Any help or advise, I’ll take! I need it. I’ve been sick for 15 years. triciawalther@gmail.com
I’m finally not alone after finding this board tonight..but how I wish no one else was suffering with this, I would’nt wish this on my worst enemy. I am a 38 years old mother of one who has been “sickly” since I was born and of course no one ever knew why, I stayed small,still am and always caught every cold flu etc and couldnt kick it for weeks when everyone else was better in 5 days.I always had swollen glands, stomach problems, fainting etc… but the doctors always said “oh shes fine”….well all these years later and I still can’t function normal there are times I feel better,sometimes a day a month and even a year once, but I know the ligh will turn to darkness again and EVERYONE will think I’m crazy when I’m sick again….Since November 10th 2009 I have been sicker then I have ever been…it started out as Bells palsy and quickly the other symptoms, like a REALLY BAD flu made me bed ridden.I have lost 12 pounds bringing me down to 89 pounds (I’m normally at 100 but Im only 5 ft tall and small boned) I am having the strangest nuero symptoms, dizzy, black outs, don’t know where I am for a few minutes, I even forgot my sons name, its devasting! Diarrhea, vomitting, extremely low blood pressure, cotton mouth,body twitches…I could go on and on….I finally found a holistic doctor who ran some virals, he couldnt believe this has never been done before…so this is what he tested Epstein Barr EBV (VCA) IgG titre is 1,939 and CMV IgG titre is at 18.10
He only treats viruses with Hydrogen peroxide IV therapy, I tried it once and it put into Hypothermic shock , I thought I was going to die, it took 3 weeks for my body temperature to come up past 95.0 degrees! So he is pissed I wont continue his treatment and have no where else to go because I have no insurance and I spent my nest egg trying to find a doctor who would even listen.they all treated me like I had an eating disored or something…I lost my job abd missed my college graduation because I am so sick, but I have an eating disorder? What is wrong with these people? Anyway I was taken to the Emergency room 3 days ago, more fainting and unstable blood pressure blah blah..they give me an IV and send me home, the ER dcotor who I personally handed my EBV and CMV results to said those viruses arent making me sick because “everyone has them”..he ran a mono spot on me and said “see its negative”…..however on my dischare papers it says “viral illness” why would he put that if he didnt believe my tests?….. Has anyone else been through this with doctors after your virals were positive? I just accepted when I was little I was ill and would never know why,,,Im very scared this time, I truly feel like I’m dying and everyone who sees me gets scared because I look like Im dying! I’m moving to New Mexico soon to live with my ex husband as I can no longer care for myself but I don’t know what to do medically after I get there? I would love to hear from someone, even the support and to hear your stories would mean so much, I dont feel like I can beat it this time and apparently the viruses I have don’t mean anything? Blessing to you all, Tracy
deerelk2003@yahoo.com please write me here
MP says,
Hi Iris,
In answer to your questions: Iam not working. I have EBV and minimal HH6. Dr Lerner has a scale at his site and I got up to a 4 whichis sitting up something like 4 to 8 hours – no way near recovered but better. I also was taking 4 G/day for 6 mo before I experienced improvement. Now I have been sick for most of Dec so who knows how I will come out of this
Good luck, Mary Pat
Hi, I to have been diagnosed with CFS. Like someone said on here this has to be one of the most frustrating illnesses. Sometimes I wish it could be cancer or something then at least doctors and friends and family would understand. It’s as it they think this is a mental illness or something-it’s sad. Here’s my story I was diagnosed with mono years ago when I was 12 (no FYI I didn’t kiss anyone) I was sick for a month or so and replased I missed alost all of my 6th grade year. I went through the rest of my school years not feeling great and missing a lot of school. My mom always thought I was faking to get out of going to school because doctors said my blood work was fine. I did get strep throat and tonsilitis and various illnesses that were treated with antibiotics. Ok, so fastforward to 2010 I am now 32. I have had a mono like illness 2 other times through out the years. One time I was so sick I was in the hospital hooked up to an IV of Rocephin (a very strong antibiotic) I’ve never felt better for a few weeks after that. This was in 2007. I am somehow convinced that this illness could be bacterial in some way. The only time I feel remotely better is when I’m on antibiotics.
Something else that I couldn’t help but notice is how alot of people that posted on here are not to far from where I live in Northern Ca. I’ve been doing research and back in the day (the 70’s I think) in the Incline village area a lot of people came down with this mysterious illness that’s why there’s a center that treats CFS there now. Also, I wanted to point out that lyme disease mimics CFS so make sure you are tested trhoughly through Ingenix labs….standard lab tests will miss the bacteria that cause lyme.
Antibiotic treatment is worth a try for this illness…the hard part is getting a doctor to try this.
Dr. Mirkin (google him) has done research on this subject and had a lot of success with using long term antibiotics to treat this condition.
Hope this helps. Sending well wishes
Started 2 by 450mg valcyte with breakfast on the 23rd June 2010. Nine days into treatment there was a marked increase in fatigue and lethargy. After 14 days of treatment there was another increase in fatigue and lethargy. Complete rest required each and every day. The significant exacerbation of these particularly symptoms is on going. Occasionally this routine of symptom exacerbation is interrupted with a better day.
I have HHV6.
Am really happy to have found this discussion! Went to Dr Enlander in nyc today for first time and he wants to start me on valcyte. I am anxious to try it but am concerned about the side effects as well as its efficacy with people who have had this illness for over twenty yrs (had sudden onset in 1986 following a flu-like illness). Had heard that valcyte is most effective when someone has been ill for less than ten years. Would really appreciate hearing if anyone has more info on this.
Thanks,
Allison
The reactions I had from taking Valcyte was a very dramatic increase in fatigue and lethargy. From week 2 to week 12 was the worst. I hope this was the die off effect? I made it to 4 months and felt completely drained from the process and started having extremely bad nightmares in the early hours of the morning. I finally stoped as felt I was just becoming to sick to continue and felt it unwise to do so. My blood tests were showing a decrease in white blood cells and a very small increase in the ALT liver enzymes.
Currently one week on I am very unwell. I am not sure if I have picked a garden type virus or I have had a relapse. The toxicity of this drug should not be underestimated. If I have picked up a virus it will be the second only in 20 years. Ever since I have had CFS I never seem to catch anything, until now perhaps. I am male, 47 years of age in reasonably good shape.
Have had CFS since 1989. Have active CMV, EBV, and HHV6
Was on Valcyte back in 2008 for a few months but didn’t notice any difference. I am going to another Dr. now who started me on Azithromycin 250 mg 3x a week. I felt slightly worse so he had me take a break within 10 days I had some of my worst fatigue I have ever had. I went back to see him and he wanted to start me on Valcyte but now my Insurance hardly pays any of it so it would be over $800 a month so I told the Dr. I couldn’t afford it and I had already been on it and it didn’t work. He told me my Dr. didn’t do it right because I wasn’t on antibiotcs along with it. He perscribed me Valtrex for now and wants me to try it along with the Azithromycin. I have not started anything as of yet and still have bad fatigue=( I am really concerned about the long term affects about long use of antibiotics and antivirals in my system. Before trying the Azithromycin I was able to do some things and manage my fatigue somewhat now I feel terrible=(
Does anyone know of a doctor who may prescribe Valcyte in the Ohio area?
My 20 year old son, who is a D1 athlete on scholarship for CC running & track, was diagnosed with mono(ebv), the other type of mono too, and overtraining syndrome spring of his senior year. He red-shirted this year, has struggled to regain his stamina has unfortunately relapsed back with the EBV. He is less than one year into this battle. I would be interested in getting Jernigan’s help or the help of Valcyte or other drugs, but I have yet to see any real success stories for either. I am in the beginning stages of my research. Any and all input would be greatly appreciated. Basically I would like to know if I should be hopeful for his full recovery within the next year. Because once a runner, always a runner! I am very concerned for his mental state. Thanks for any input. We are from Austin, Texas.