tag:blogger.com,1999:blog-22576999.post5729008090640062931..comments2024-03-27T14:05:22.815-04:00Comments on Live With ME/CFS: Test Results and Next StepsSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-22576999.post-563747743103933732011-08-23T11:24:08.804-04:002011-08-23T11:24:08.804-04:00Kat, I know your post is 3 years old, but if you g...Kat, I know your post is 3 years old, but if you get this, please reply. Or directly to me at lisesheehan@yahoo.com. I have just started valcyte and feel immediately better also. This is contrary to everything I've read. Everybody else says they get worse before for months. Well this time I decided to start slowly and I took 1/2 a pill 2x for a day, then 1 pill, 2x. And I'm going to stay there a few days. My big question to you is did you continue to feel better? How long did you take it? Did you relapse after? I really wish there was a website with peoples long term experiences of this drug. Thanks if I hear from you!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-59025389076596749802008-10-14T15:52:00.000-04:002008-10-14T15:52:00.000-04:00Thank you so much for your post; I wish I had foun...Thank you so much for your post; I wish I had found it when you first posted it last year. You see, for years I have suffered with CFIDS off and on (mostly on), with symptoms much, much worse with even the slightest stress. I also was diagnosed with fibromyalgia and I can tell the difference between the two, although of course some experts now say they are one and the same (could be, except I can tell that my fibro is more painful and the CFS more of a "I'm-drained-of-all-my-blood,-bones-and-muscle" sensation. When tested, I had/have excessively high levels of EBV (even was diagnosed with mono at 13 and then in my late 20s along with having full-blow chicken pox at least twice), CMV, HHV-6 and other antibodies in my blood, at points high enough where I was offered money for my blood plasma to be used in research and/or a cure. I also had/have tested way below normal on IgG, IgM, IgE, etc., in my blood. I have been on various courses of Valtrex over the years, a very high dose for twice a day and while it did eliminate profuse perspiration episodes I had at night, it didn't do a thing to increase my energy. In fact, nothing has seemed to work as well as the Valcyte, which I only just started yesterday (Oct. 13, 2008). I already seem to have more energy, and today have managed to "over-do" (in terms of the pain I have from the fibro) and accomplish more things this morning than I have in weeks, months and/or years. On the other hand, I am also using the Fatigued to Fantastic Energy Enfusion (I may have spelled that incorrectly) twice a day, and increased my Vitamins D and CoQ10 (I'd eat live scorpions if someone said it would cure me of this fibro and CFS, so I don't fear later cancer to live a life now that I've missed out on for so very long). In any case, I just wanted to let you know my experience on Valtrex. By the way, even on Valtrex, despite no severe night sweats any longer, I still ran fevers late in the day. Do you experience that?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-77209373576107443312007-06-25T14:15:00.000-04:002007-06-25T14:15:00.000-04:00Have you seen this web site?http://www.cfsviraltre...Have you seen this web site?<BR/><BR/>http://www.cfsviraltreatment.com/clinical_patient_study/index.htmlAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-48638574923818234882007-06-10T13:22:00.000-04:002007-06-10T13:22:00.000-04:00Hi,I am currently being treated at Stanford on Val...Hi,<BR/><BR/>I am currently being treated at Stanford on Valcyte. I have been on it for 4 months now and I am at times about 30% better. My EBV titers were very very high and my HHV-6 were also high. It is a very very slow process according to Dr. Montoya. I would be happy to discuss my experience with the drug and treatment. I am also a physician and I have a very good understanding of the treatment. You can contact me at jerrysobel@gmail.comDetoxing Maniachttps://www.blogger.com/profile/01164408092346528125noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-16811689705546798642007-04-25T14:45:00.000-04:002007-04-25T14:45:00.000-04:00Jacki -I have no idea what triggered my CFIDs to s...Jacki -<BR/><BR/>I have no idea what triggered my CFIDs to start. It began very abruptly, after 36 years of excellent health, so I guess it was some mystery virus. I had mono (EBV) when I was 13, and my kids were both vaccinated against chicken pox. When I first got sick, no one else in the house had any sort of viral symptoms. One of many mysteries...<BR/><BR/>Thanks for reading and commenting - <BR/><BR/>SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-51786530163185519042007-04-22T04:34:00.000-04:002007-04-22T04:34:00.000-04:00Good luck with the Valtrex, I notice you don't act...Good luck with the Valtrex, I notice you don't actually say what triggered your ME. Your EBV is borderline, so perhaps you havn't had Glandular fever? Have you or youe family had Chicken pox recently?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-14218752364770630112007-04-17T01:45:00.000-04:002007-04-17T01:45:00.000-04:00Fascinating post, Sue! I'm very glad you're postin...Fascinating post, Sue! I'm very glad you're posting about you're experience with Valcyte and Valtrex. It can be so frustrating reading articles, like the one about Dr. Montoya's study in which his patients pretty much recovered and think <EM> is it here? has the cure finally arrived</EM> only to find that there's a lot more to the story. Thanks for telling the rest of the story, as it were. :)Michelle https://www.blogger.com/profile/05759387306193137795noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-78727913756532058822007-04-14T12:34:00.000-04:002007-04-14T12:34:00.000-04:00Thanks for posting your results and the new game p...Thanks for posting your results and the new game plan. Hope it goes well. Cheers! <BR/>(Sorry, my daughter was signed in the first time.) SherrySherryhttps://www.blogger.com/profile/11034488498196936495noreply@blogger.com