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.
Patients with high IgG antibody titers against HHV-6 and EBV who were suffering from central nervous system dysfunction and debilitating fatigue for more than one year (median 3 years, range 1−8 years) were treated with 6 months of valganciclovir in an open label study.
Results: Nine out of 12 (75%) patients experienced near resolution of their symptoms, allowing them all to return to the workforce or full time activites.
My physician has me addressing the bacterial issues (mycoplasmas, etc) that is the underlying cause of my illness (my opinion along with some other physicians) and is waiting for the results from the next Valcyte trial. Since I am making progress on my current treatment, I may decide to stick with it, although it takes years.
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.
I have both chronic EBV and CFS and FM. It was in the past thought that if you have chronic EBV that you had CFS. Research has shown that this is not true, all though sometimes something like having EBV and/or some other virus or infection, surgery, big life event, or even a car accident has been thought to cause CFS.
The only two treatments that I am aware of that has apparently cured some CFS patients would be the antibiotic protocols (I listed some of them in the health pages) and Valcyte, a very powerful anti-viral drug. The co-founder of PetsMart was on the original study and he is now jogging again. He said he had CFS after a flu-like illness and I believe he was disabled when he participated in the study. I believe Dr.
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.
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?
approximately 90% of people have acquired EBV by age 30 (and we can logically assume that number would be even higher for older people). Therefore, for any cases of cancer in people age 30 or over (which I think is easily the majority, although I don't have numbers on that), 90% will have EBV. So of course it looks like there could be a link there, but that same 90% EBV rate applies to non-cancer patients as well.
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
by the time we reach 40, 90% of us has had ebv. it's incredibly common and most of us don't get ill enough from it when infected to even think twice about it. it's not a part of routine testing except for pregnancy.
no, you won't get ebv again, you already have it.
Hi, I would say pitterpat69's answers were all correct, with the exception that EBV can be transmitted anytime, by anyone who has been infected. As pitterpat69 said, when someone is asymptomatic, the chances of transmitting infection are much lower; however, the possibility is still there (maybe that is what she said, and I just read it wrong?).
I have the EBV too, in my body and it reactivates and I can tell when it does, so yes, you can be diagnosed with EBV. I was. The EBV stays in your body always. For some people, they will never know. For others, like me and sounds like you, it will reactivate from time to time and cause issues with your immune system. If you look it up on the internet, there is lots of interesting reading.
I was diagnosed with EBV a few years ago, last week I tested positive for Herpes (not sure HSV1 or 2, my appt to go over results is tomorrow). I know that the EBV and HSV are in the same herpesvirus family, but is it possible that I tested positive for Herpes because of the EBV? Like, could it be that I in fact do not have Herpes, and the EBV made a false positive? I've never had a sympton of Herpes, or atleast one that I have noticed.
I have also been very stress. went to my doctor and tested positive for EBV, but tested negative on monospot test. She informed that I had a re active of EBV never recall having mono anyway. My questions are
1. can a active EBV delay Hiv antibodies( I know if you have a depress inmmuine systems that it can does EBV fall into that category)
2. I have read online that EBV never flares back up unless you have encounter another sickness. is that true?
3.
good morning. First off I am not a physician and this is just my personal opinion from ebv research. If you were "diagnosed" with ebv 2 days ago I assume that you had an EBV antibody titer panel done to confirm the diagnosis. If not, you might consider asking about this to provide additional, relevant information. Hope you start feeling better soon.
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I am wondering if having mono/