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Treatment for chronic Epstein-Barr virus (EBV)
Infectious Diseases | Last Active: 5 days ago | Replies (615)Comment receiving replies
@jamienolson in late 2007 my PA and doctor finally decided to test my IgG and IgM and ANA levels. Additionally, EBV was ordered. All were positive and high. Since then, the levels have remained active and high. In 2008 I was sent to a wonderful Rheumatologist who had the brilliant idea of putting me on Valtrex. Since then up until about 1month ago I was taking it. As I I had moved to another state and my new PCP kept “fighting” me on continuing me on Valtrex despite my records and blood work showing the positive lab values, he has stopped my Valtrex. He referred me to a local ID doc who sent a reply to my PCP saying he could manage me that I didn’t need to be seen at ID clinic. Slowly, my energy has been depleted. My muscles are extremely fatigued easily. I feel like all the great years I’ve had have been thrown away. I’ve gone from feeling great, being able to function, work, workout 5x/week to now being barely able to work. What can I do to convince this PCP that Valtrex does work. I’ve tried giving him literature, etc. he even has my records. Please help.
Replies to "@jamienolson in late 2007 my PA and doctor finally decided to test my IgG and IgM..."
I don’t mean to sound dumb but what are SEID/ME/CFS? I’ve contacted my previous rheumatologist as she is also a friend to let her know what’s going on and see if she can perhaps speak to my current PCP. Something has got to give.
Hi @dbreed. Systemic Exercise Intolerance Disorder, Myalgic Encephalomylitis, Chronic Fatigue Syndrome. They all kind of overlap.
Systemic exertion intolerance disease is the new name for ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). It is an autoimmune disease that is brought on most commonly by a virus (EBV and Lyme disease are the biggies). It causes autonomic, neurological, neuroimmune, GI issues and many other issues.
There are few specialists in this field. I got my dx at Mayo Clinic, but they are way behind on the research. Standford is where they are doing a lot of research and have specialists there that have tests for it. There is no current treatment and the one most commonly recommended by doctors around the world actually can make the disease progress and worsen (GET and CBT). But a lot of research is being done right now on it by immunologists, virologist, neurologists, radiologists, etc.
SolveCFS.org and ammes.org are good resources to do a symptom check to see if any of it even fits.
I just hate you were all better and a new doctor won’t let you be well again! I’m so sorry!
@uldiver ty so much for the great information. I will definitely check into it. Truthfully, for the most part since 2008, my health status has been kept in check w/Valtrex. However, I didn’t look further into other possibilities as I put the DX out of mind and just pushed forward. I’m in the healthcare field too! My heart goes out to all of the folks on here who are searching for answers and desperately needing relief. It’s an awful chronic condition. However, it can be managed as long as we have the right medical professionals who recognize this is a real problem and treat patients accordingly.
@mrmie ty!!! Also, if you read my other responses, I thought I was responding to you. I’m new to this forum and keep forgetting to put the @ symbol to respond.
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That stinks. It sounds like you have SEID/ME/CFS and have been able to manage with medication that works for you. I’d get another doctor!