← Return to Treatment for chronic Epstein-Barr virus (EBV)
DiscussionTreatment for chronic Epstein-Barr virus (EBV)
Infectious Diseases | Last Active: Nov 26 9:26am | Replies (635)Comment receiving replies
Replies to "@clghanimo @suzyp @jonnybear619 I thought this video might be helpful for you. What happens when you..."
Hello @airsleeper, I completely agree with you. I'm guessing there are a lot of illnesses that may fall into that category of occurring more with women than men or vise versa. I think it probably has more to do with different levels of experience, specialties and expertise of the different doctors involved. That's really why (IMHO) a person has to be their own advocate and learn as much as they can about their illness and ask lots of questions and not taking I don't know for an answer - that's a little over the top but I think a person has to be persistent. We patients may not have the medical knowledge but we do know how we feel and we need to make sure the doctor understands, pushing them to find the answers. I've had many of those discussions with my primary care docs because they change every few years in a family clinic. My last doctor wanted me to take statins to "help" lower my cholesterol and was quite taken back when I told her I'm not taking them, I will work on my diet to try and bring the numbers back into line. I told her one of the things I have learned about my peripheral neuropathy is that statins make it worse so why would I want to take them.
Anyways, I'm hoping all of us can find some answers and the help that we need. Have you found anything that helps you that you can share?
John
John, thank you for the info...the video was very touching ....I'm considering trying to get an appt. in Jacksonville.
More than one person spoke about a video. How do I access it? I too have had Chronic Epstein Barr Virus for at least six months and have been trying to get more help with this. The Mayo Clinic rejected my application. I do have one doctor who recognizes the illness but doesn't have much experience with it. I am always searching out additional doctors but the only treatment plan I have is to get lots of rest and to take some supplements. I have modified my diet some but I have always had a mostly plant diet and lived a healthy lifestyle.. Besides the video if there are any other suggestions, please reply. Thank You.
I believe you are talking about the video John Bishop shared about a TED talk about Chronic Fatigue Syndrome:
What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome:
http://bit.ly/2nvf21H
Michellebelle, my 25 year old son has been sick with brain fog, blurry vision and extreme fatigue. He has adjusted his diet about 2 months ago and started some supplements. Dry just say he will get better on his own. We are now looking into holistic Drs. All costs a lot of money out of pocket and no proof this will even help. My son is living half a life and the drs have no answers. Very scary stuff.
Awesome video. Thanks, John, for posting. I understand how frustrating it must be to be a woman and an illness be passed off as an irrational woman thing. However, what is even more frustrating and even more demeaning to me is to be a man with ME and made to feel less of a man because this illness is usually diagnosed in women. The lady in this video does a great job explaining the history of ME. It's just another way that the medical community is avoiding the medical issue of ME. I am a 54 year old male. I was finally diagnosed in 2013 with Chronic Epstein Barr Virus, Chronic Fatigue Syndrome (ME), and a host of many other things. I've had to leave a job that I loved and excelled at after 21 years, relationships have suffered, and finances are a mess. I am a man with a disease. THIS IS NOT A GENDER SPECIFIC ILLNESS!