valcyte and cfs

I just joined this forum and have a question regarding my EBV tests and Valcyte. My doctor wants me to start Valcyte for my elevated HHV6 and EBV antibody levels. I will post them and if anyone here has any thoughts on them I would very much appreciate it. I know this isn't an HHV6 forum but I will post the test results as well. HHV6 Ab IgG 21.44 (range 0.1-1.

d been blown up and burnt. Fever, very sick, mad itching. Antibiotics and steroids, gradually better. V. bad CFS symptoms, could not get out of bed for 3 weeks. No energy to talk. Managed to get to dermo the nevt week.Bloods. Result: chicken pox varient and cytomegalovirus. Advised ganciclovir (?). Looked it up, really scared to take it re. allergies. Any info please. Seems the cure is worse than the illness! Please will someone tell me about this virus, anyone who has taken this anti viral?

Attached to this letter is a copy of the protocol we have followed at Stanford for identifying and treating patients with chronic fatigue syndrome (CFS) likely to have a viral etiology. Also attached is the abstract of our published paper reporting our experience with open-label usage of this drug. We have attached these documents for your informational uses only.

One woman claimed on the internet that she became worse after taking Valcyte. Of course Valcyte is a nasty drug and this trial and many physicians won't prescribe it unless you are disabled.

i curently take 20mg of dexedrine bid 20mg in the am and 20mg towards noon and it works well at that point but drops drastically. would it be out of line to ask my dr to incres another 20mg dose at around 4pm ? does this seem like much? or what other colul i get a suggestion on another med vyvanase vs adderal vs cytolert ritalin extented? i have tried progil in the past with not much relief..what really works? a combinatin of extendedrelease with immediate release?

On my breaks I would run from the 25th floor, (where I worked), down to the first, then back up 15 flights. Then CFS came into my life and I find that even if I start with 10 seconds at a time of walking and build up, I never feel like I am rebuilding stamina. It is such an effort, (not exhilerating like it used to be), and I'm always at risk for pushing too far, resulting in a crash. Anyone have a successful approach to exercise with CFS? Thanks.

Have any one heard of Ampligen being approved in 2009 for CFS and so far I have heard some positive effect on CFS patients without too much side effects. I think they just completed phase 3 trials. Anyone have any ideas?

m actually here is to catch people who I think may have CFS and try to give them information and get them to join the fibro/CFS community. Sometimes I get frustrated because members don't respond.... but I understand. Thinking that you may have an illness called "Chronic Fatigue Syndrome" is a BIG pill to swallow. I asked MedHelp to add the fibro/CFS board in this forum (check under "related communities") and they did do that.

I think many fibromyalgia patients find this hard to believe... but of course CFS know we have an infection. This is due to research on CFS and also the fact that most of us became ill after having a viral illness. I know that EBV was the trigger that set-off my CFS symptoms.. without a doubt. An estimated 60% of fibro patients have some CFS symptoms and vice versa. Of course as you know... we all share symptoms of lyme and autoimmune diseases !

David Bell says that 40% of CFS patients have a fllushing rash of the face and cheeks and 85% of CFS patients have a fever or sensation of a fever.

It sounds like you have EBV virus induced CFS. EBV is notorious for causing peripheral neuropathy and autonomic system disorder which are the symptoms you describe. I had all this tested at a special neurodiagnostic lab and that's what I have. It sounds like you're taking all the right meds. There's also these stocking you can wear. google peripheral neuropathy treatments. Also check out a dr who'll treat your ebv/cfs with anti virals such as valacyclovir or valcyte.

Many physicians are hesitant to prescribe this drug for their patients because it is such a powerful drug, that it lowers your white cell count and other labs. I could just imagine takingt this medication and then catching a cold. Yikes ! Dr. Jose Montoya at Stanford University had a successful outcome for his first research trial using Valcyte. I believe the results of his second study are still pending. Lastly, two-thirds of CFIDS patients have bacterial infections.

You know I just checked and it appears that there aren't any antiviral medications that are effective for infectious mononucleosis. I know that there are natural antiviral supplements such as grapeseed extract oil, olive leaf extract and apple cider vinegar. For chronic EBV infection (CFS), there are antiviral medications such as ampligen & valcyte. My physician originally prescribed the Marshall Protocol for me and I've had success.

I am convinced this stems from the EBV when I had mono. I have been reading about CAEBV and CFS. My feeling is that the EBV has triggered CFS or it has lead to a persistent illness in my system. I do not know where to go from here. I have been to my family doctor several times and he has ruled out other causes of fatigue (e.g. depression, testing thyroids), but I don't seem to be getting any solid answers.

and read about all of the mycoplasmas and viruses that are found in both CFS and FM patients. You might want to print that page... perhaps also find the information on the Valcyte trial info as well. (Dr. Jose Montoya at Stanford University) I don't think most people realize the heroic efforts that CFS & FM patients make on the daily basis.

) and felt like it was speaking right to me and me only. I went on his website and read the book and decided to try his protocol based on my symptoms. I am just curious to know if anyone else has done this and how successful was it? I found all the supplements I needed from my local health store. So, if anyone else has done this and has some input, that would be great. Thank you!

I completed treatment 5 1/2 yrs ago and have since developed chronic fatigue syndrome,extreme tiredness-will sleep for weeks,liver discomfort,muscle joint bone pain,ibs,tendonitis,can only sleep for short periods wake with random pain,night sweats and terrors,have numb areas,hands and feet get painful and often numb when waking,sore dry eyes mouth and throat,low platelets,anxiety,depression,confusion,brain fog,memory loss.

thank you so much for all your replys my moms liver and kidney test are getting much better but she is still vary sick nausea vomiting and up all night with diarrhea and she never had that before they are treating her with iv antiviral treatment valganciclovir i think iv fluids and they even said when she goes home she will still be using the iv treatment they put a pic line in yesterday this will be day 3 of treatment 1 week in hospital im getting vary concerned that she is not getting any b

Its funny because a lot of money was allocated towards research to find a link between stress and CFS. And yet no link could be found ! What they suspect is pathogens... the same probable cause for autoimmune "syndromes" such as Sjogren's Syndrome and Guillian Barre Syndrome.

Our recently published studies demonstrated a possible link between mycoplasmal infections and CFS and FMS, since we found high frequencies of mycoplasmal infections in these patients." http://www.immed.org/illness/fatigue_illness_research.html Since I didn't have a positive ANA titer for many years (but still undiagnosed CFS).... it makes perfect sense to me. I am currently being treated for mycoplasma infection and also viral infections.

David Bell, a fibro/CFS expert, has commented on this in the past. I wish I still had his quote and the source, but basically... he explained how a person could have mono symptoms and/or possibly CFS after a chemical exposure.

I have been fighting CFS for the past 18 month and do notice symptoms gets worse after drinking coffee and alcohol. Are their any links to CFS and these 2 beverage?

m thrilled that they are taking both CFS and fibromyalgia seriously ! I applaud any and all physicians who care about CFS and fibro patients.

I too suffer from cfs and also have the acid reflux that you have. Although the docs seem to be unsure of whether this is all it is or if it is gastritis or an ulcer. Irritable Bowel Syndrome (IBS) is a symptom of cfs and I have this so I just assumed that it was coming from that. Its all linked to the cfs anyway.I have found no other solution to taking antacid pills. Gaviscon and omepazole sort it out eventually for me.

There are an estimated 2 million people in the U.S. who have Chronic Fatigue Immune Dysfunction Syndrome and 80% of them have yet to be diagnosed. I disagree with your physician. CFS is not a "trash can" diagnosis. This illness is very real and I recently posted in the fibro/CFS forum (I'm one of the Community Leaders there)... the comparisons between MS and CFS. Here is the link: http://www.medhelp.

I have had CFS for 10 years and my ANA is 640 with patterns of always speckled and homogeneous. I have more CFS than I do fibro. I have the fatigue which is severe. I have secondary Raynauds related to my illness. Because of low blood volume my feet turn color when I'm sitting. But when I'm in the cold, my fingers don't turn blue and white. I have the rash on my face, neck and chest. Ever since I got CFS my ANA was always positive.

All of the best research on CFS has not come from the CDC... it has come from other physicians and researchers and non-profit institutes. http://www.medhelp.

I failed my stress test miserably and have to have a catherization procedure and while researching about that, came across an article on the Epstein Barr virus/CFS and heart problems. I had no health problems whatsoever until 4 years ago when I got so sick and when I think I caught the EBV. Then all these problems cropped up. Also, having terrible numbness/tingling in my arms and legs,especially the left side.

Valcyte and cfs

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