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.
I read online a post from a lady who claimed that she was on one of the Valcyte studies and she became even sicker after the treatment. I know that one CFS expert was recommending Valcyte only for people who were disabled. I am interested in reading more about Montoya's second trial.... but I really do have concerns about these people relapsing. These antiviral drugs suppress the immune system.
sources:
http://www.immed.org (click on fatigue illness)
http://www.medicinenet.
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
http://www.medhelp.org/posts/Fibromyalgia---CFS/Antiviral-treatment-strategies-in-Chronic-Fatigue-Syndrome/show/724564
Valcyte for CFIDS:
http://www.chronicfatiguetreatments.com/wordpress/treatments/treatment-of-chronic-fatigue-syndrome-with-valcyte/
Mycoplasma Testing:
http://www.medhelp.
http://www.medhelp.org/health_pages/list?
s (Stanford University) Valcyte trial. Fortunately... he was one of the lucky ones. The first Valcyte trial was a success, but I've heard (without seeing the results) that the second trial wasn't. 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.
Why do that when we have Valcyte (also a little bit frightening, but probably not as bad as the chemotherapy treatment) ?
However after about a week and a half to two weeks the pain went away. I was started on Valcyte about 2-3 weeks after all this. I also had a blood vessel rupture in my eye towards the back making it almost impossible to see anything when I went to try and find out what was going on (Have been seen by three different optometry clinics). I Have also been using Predisonal 4-6 times a day and Cyclopentalate 2 times daily.
Of course the drug that Dr. Moore must be referring to for treatment of CFS is ampligen, an experimental drug that is administered intravenously and is still waiting for FDA approval for treatment of CFS/ME, HIV, renal cell carcinoma and malignant melanoma.
http://en.wikipedia.
My son is 16 and was diagnosed with mono February of 2012. He has had neurological difficulties and a steady cognitive decline. His HHV-6 IgG was 1:1280 and his DNAse B antibody was 448. His doctor wants him to start Valcyte. Does anyone have any thoughts on this.I'm not sure how this will effect him while going to school.
I have CLL and was just dx with Papillary Thyoird Cancer-one cm nodule on isthmus dx by FNA. I also have several small nodule on the right lobe and lumpy lymph node on my right neck. I have had extreme fatigue prior to the thyroid dx. I'm schedule for a total thyroidectomy and select lymph node removal next week. Doc says no thyroid replacement therapy for thirty days post-op pending scan for metasteses. I worried about the thirty days. Any idea on what I can expect?
We declined, which is a good thing now because I have a surrogate that is pregnant with twins and they are due in Feb of 2009. I have been thinking about trying the valcyte. The only problem with me and valcyte is that I have chronic low white blood cell counts. Mine are always in the 3.2-4.5 range. I have had a bone marrow biopsy and some other tests to rule out any kind of blood cancer.
I do plan on adding Ampligen to the list of CFS treatments. I also need to add that Valcyte trial. But of course... some of these treatments for CFS are risky. I want to include my personal thoughts on that as well (and anyone elses).
Antivirals suppress the immune system and as jason said, "keep the bugs at bay". There is one antiviral, Valcyte, that apparently is either curing or putting some CFS patients in remission... but the risks involved with Valcyte are too risky for me.
(about Valcyte: http://www.drpodell.org/chronic_fatigue_syndrome_hhv6.
It is very true that immunosuppressive drugs like cyclosporine,cyclophosphamide and methotrexate are used in the treatment of various allergies and autoimmune diseases.In fact,some of these drugs are extensively used in autoimmune diseases like lupus,rheumatoid arthritis and eczema.
But these drugs are to be used only as a last resort when the disease is resistant to corticosteroids and other therapy.
It is working, although it takes years and can make you feel worse. But it is intended to cure CFS... just like the drug Valcyte. But Valcyte is an immunosuppresant and has some very toxic and possibly deadly side effects.
If you have any questions for Dr. N... zip them my way before 5 PM (Pacific Time) today. Send them via PM or note.
The other viruses showed latent infection controlled by the immune system. I was given Valcyte 450mg a day for 4 months.. after that 2x1000mg valtrex (valacyclovir).. my CMV titers fell down the half and i stopped the medicine.
Now im thinking.. that all the time, all my problems are caused by the ebv virus.. and i think im right because all other things.. like:
vitamins (also vit D, B12 .....)
Infections (really all kind of Infections.. babesia, bartonella, toxoplasmosis...
Immune boosting supplements and vitamins have not helped nor has extra rest. Have you tried low dose naltrexone, lysine, Valcyte, Valtrex or ozone therapy? I am awaiting an appointment at the end of July with a doctor who I hoping can help but wondered if you had any advice. I hope you have regained your energy and wellness.
Hi bfinger, I'd research M.E and CFIDS (chronic fatigue immunodeficiency syndrome). I started out with the many of the same warning signs as you in the 90s. They were subtle, intermittent until more frequently causing havoc then they stayed and never went away. More research is now being done on M.E. / CfIDS but it has a long way to go. Treatment is a "crap shoot" but look into HHV6, orthostasis that comes along with M.E/CFIDS. ALso, M.
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