Treatment for chronic Epstein-Barr virus (EBV)

Just found this site. This is my first comment, and I haven't had a chance to read all entries. I have tested positive at my family doctor's office for mono for 2 years. (Tested every 3 months) My only symptom is chronic fatigue, and that I profusely sweat (just on head and face) if I attempt any task. I am scheduled to see a doctor of internal medicine this month. I am basically unable to function in anything. Can anyone give me imput if similar to mine, and any words of encouragement? Thank you

@012064 Hi Back when I was in my late 20,s I had severe mono I had an extremely high coint which broke me out with a rash all over my body The Dr ordered me bedrest for a month and heavy duty vitamins I was still single so my Mom took care of me Im sorry that was so long ago I don't remember the shot or vitamins .In my 40,sI developed fibromyalgia whether this is related to the E.B virus or not ,no Dr has said.

I am a 17 year old as well, suffering from CAEBV and CFS. I have missed my junior prom, almost half of my senior year, and more because of this illness. it is debilitating. I sleep 20 hours every day. My body aches, I have chronic migraines. Nothing seems to help. My pcp gives me antibiotics and steroids but that only works to get me on my feet for a week or teo. Then its back to being sick again. I have taken many precautions. I wipe down my desk every period, when I'm in school. I take half days, but I am constantly exhausted from even trying to get up. Please if you have any advice- tell me. I could use it. Anything is appreciated. Thank you!

@lexykalt Your to Young to have this My Dr gave me vitamins for One thing when I had mono ,ask the Dr to run a vitamin panel Ask to see an Infectious Dr.

This is my first post. I’ve been struggling with reactivated EBV throughout 2018. I believe it was brought on by the stress of having a vagus nerve stimulator surgically implanted to control my seizures, and a very difficult 2016 - 2017 trying to get my seizures under control with dozens of medication changes. None were effective (terrible psychiatric side effects), which is why I opted for the VNS, and that has been a much better treatment option. Aside from becoming ill with EBV.

My thyroid function is off (I have Hashimoto’s), and I’ve been swinging between being hyper and hypo. So my meds have been changed several times in the past year. I have more symptoms of being hypo. Add those on top of my EBV symptoms. Not fun. I don’t dare brush my hair for fear I might lose what’s left of it!

I’ve tried three courses of antivirals. I take liposomal Vitamin C, L-lysine and monolaurin daily, plus magnesium, calcium, zinc and a B-complex. Weekly, per my doc, I take 50,000iu of Vitamin D and an additional 2,000iu per day, but I’m still deficient. I guess my body isn’t absorbing or using D for some reason. Maybe because I had 20 precancerous colon polyps removed in 2017. No one has an answer. I spend money out of pocket to get B12 injections and IV vitamin infusions because my doctors have been of little help and I just want to feel better and reclaim my career, time with my family, my life.

Essentially, I’m bedridden because of the fatigue and pain. This has made my anxiety and depression unbearable. I’m at my wit’s end. There is only so much clean eating, so many vitamins and therapy one can do to keep at this day after day. Where are the doctors who can help? Who want to help? Who are qualified to help? Mayo’s Infectious Disease department refused my case, so where do I go now?

Finally I went with integrative medical approach and have had much success. I thought I was dying. Iron, C, D & B were all extremly low. I did the iron injectfer and what a difference. I have a lot of inflammation and taking all the pills to help too. My thyroid is constantly changing like yours. I have an old and new EBV activated. If you can find an intregrative office with someone specializing in thyroid they know about the stuff that goes along with it. She says Thyroid & EBV go hand in hand so she is very well schooled with EBV.

@chasingshadows I totally understand wanting to "reclaim your life." I recommend continuing to research and find something that you think will work for you. I have not heard any good things from anyone with EBV and Mayo. Another option is the functional medicine clinic at the Cleveland clinic. Also Dr Rodger Murphree at http://www.yourfibrodoctor.com, Dr Jacob Teitelbaum at vitality101.com. Kasia Kines, PhD just published a book about EBV called The Epstein-Barr Solution. It sounds like you are taking a lot of the right supplements. I am also on a lot of those however, I believe my issue stems from low cortisol so I am trying to focus on that now. I filled out the online paperwork to work with Dr. Murphree. I'm hoping to hear from his office soon. Continue to be your own advocate. Don't give up!

Thank you will do.

@lexykalt let us know how it goes for you

@chasingshadows You said you take Vit D is this D3 from my understanding there is a difference The D3 is suppose to be better for the body to absorb Ask your Dr about this