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Doctor Recommendations for Chronic active Epstein–Barr virus (CAEBV)
Infectious Diseases | Last Active: 1 day ago | Replies (35)Comment receiving replies
I have had high EBV titer since being diagnosed with ME/CFS over 30 years ago. I have a Primary Care Doctor,
Cardiologist, Nephrologist, Endocrinologist. Not one of these people has suggested any treatment for EBV or suggested seeing another type of doctor. The information I get from these people is that there is no treatment. Also, no one seems to know what EBV can cause. All this is puzzling to me particularly since I started participating in the Mayo Connect groups and have discovered so many people who have high titers. It seems
rather strange. Are there Mayo physicians doing research on what this disease can do to the body and how it
affects immunity? Are there physicians anywhere doing this research. If there are, they're not publishing material available to the the general public and apparently physicians don't know about this research or, I hate to say this, don't care about it. Tests for EBV should be included on all yearly blood tests that are given as part of wellness exams. They aren't. If they were, a pattern might develop. In the meantime, all of us with high titers are left to research on our own. Very peculiar for something that turns out to be fairly common and could affect our well-being. Also, consider the fact that we're in the midst of a Covid epidemic. None of this makes sense.
Replies to "I have had high EBV titer since being diagnosed with ME/CFS over 30 years ago. I..."
Can you tell your EBV Titers Please.......
I encourage you to research ozone therapy.
It may I may not be right for you…
I just recently started with a functional medicine doctor after exhausting efforts with my MD.
I am only on my second treatment but I am very hopeful that this will cure not only EBV in my system but also my my hyper parathyroidism that I have been diagnosed with.
It is not FDA approved, but many functional medicine practices, offer it here in the US and is highly offered in the Europe.
One of my girlfriends has Lyme disease and has been getting ozone therapy as well as chelation therapy. Apparently it’s a two year process to rid the body of Lyme disease but her last bloodwork showed and the EBVirus is gone from her system. She’s been at both therapies for eight months now and her last bloodwork showed EBV antibodies were completely gone.
I am only on my second treatment, but extremely hopeful that this will cure my auto immune disease and EBV
I hope this helps.
Our journeys are frustrated by a medical system that is in the pockets of the pharmaceutical companies. In my opinion the whole system wants to keep us sick so that we are dependent on their medication’s until we die.
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CFS/ME center at Stanford University. Long waiting list there and you have to meet the criteria for that. They DO know about the connection with EBV. And they may know of EBV specialists to recommend. Stanford used to have an one of the few EBV specialists in the country there but he was fired. I don't know if they have a new one. If my symptoms don't resolve soon...they are on my list to call for a recommendation. Sounds like Mayo could help too.
How did they diagnose you for ME/CFS over 30 years ago? I am very surprised they didn't at least put you on an antiviral? Or did they and it didn't help?