Just Diagnosed w/ Epstein-Barr Virus. Now What?!

Epstein Barr Virus is a virus in the body of most individuals. But, usually, healthy immune systems keep it in check. You can certainly get "mono" from yourself. I did. When your immune system is challenged (by other viruses, bacterial infection, stress, etc) or crashes, the EBV in your system can replicate to high enough levels to tip you over into active infection.

Once infected, you can "recur" active infection again any time you get run down. So, to me at least, it becomes a lifestyle illness. Keep as well as you can and the incidence of recurrence is limited... although I have never found a way to totally prevent all recurrence.

Laura

Thanks for the replies. I am just so tired of being sick & tired! Do I need a referral for an immunologist?

amazing. what did you doctor say that tested you?

Did he offer some kind of treatment?

EBV is something I am trying to figure how to deal with.
I only found out I've had lyme most of my life. It seems like
a lot of the lyme people have EBV also.
some say MONO is EBV.
My sister had to go on thyroid meds after her Mono episode when she was
12.
I would really like to hear what people are being treated for EBV also.


One thing I have found to feel more energy is to make sure I get enough protien and am trying some where bettween the Lipid diet and the Peleo diet.

Otherwise many people are having good results with B12 shots. I'm gonna try that next.

good luck. It's nice to finally get an answer to why you been feeling so fatigued but it would be really nice if you had answer how to turn it around.

I have also recently been diagnosed with EBV. Since giving birth to twins 8 months ago via ceaser, i have been experiencing chronic pains and exhaustion unlike anything i've ever felt before. Not believing this was "just" a part of having had a caeser or the strain of adjusting to life with newborn twins, i have visited my medical centre more times since December, than i have in my whole adult life. I am 35 years of age, and up until this EBV infection, i had never had need to visit a doctor. I had previously exercised daily and felt great. After refusing to leave the doctor's surgery yet again with the usual advice of, "lose weight, stay warm and rest", i persisted and managed to find a female GP who ran the gambit of tests - blood tests, chest xray, ultrasounds. Having always believed it was a "kissing" disease i was shocked to learn that i had recently become infected with EBV and, as a double whammy, had been exposed to Ross River virus (a debilitating viral illness, caused by mosquito bites, and apparently common in certain parts of Australia - who knew! I had not even noticed a bite mark on me!).

Joint pain, night sweats, inability to lose weight (despite exercising regularly), swollen and extremely painful glands, esp in the left side of my neck, crashing for days after any great physical exertion - i was, funnily enough, relieved that it was "just" EBV; as punching those symptoms into Dr Google will bring up a range of nasty illnesses from HIV to lymphoma (the one that scared me the most!). Although the GP has told me that it will take up to 2 years for me to recover, and that it is a matter of waiting it out, i am going to be proactive about this bloody thing and use it as an opportunity to become even more healthier than i had previously been. Now that i know that i wasn't "imagining" the symptoms, that i have blood results to prove that i am feeling physically lousy for a reason, has given me a new found sense of power, as now that i know what i'm dealing with, i can learn about it, and take charge.

My vitamin D levels at diagnosis were quite low (24) - so i am currently on 5000 iu/day, and am starting to feel fantastic - I would recommend to anyone who has EBV or CFS to check their Vit D levels twice yearly, as it's such an awful state to be in when levels are low - it lowers your immune system's ability to fight off illness, and i contribute my getting the debilitating EBV symptoms to my generally lowered immunity (caused by pregnancy and limited time in the sun). The aches and pains, whilst still present, have certainly started to diminish, after a month on the vitamin supps. The swollen glands still persist, and they are something i am very much made aware of, unfortunately. I am eating more protein (less carbs), and i am trying to walk everywhere, instead of relying on specific workout sessions to shift the post pregnancy weight. I find the exercise helps to raise my energy levels temporarily; but boy, do i pay for it the next day. If the pain is quite bad, i just take some paracetamol, or use a Chinese ointment that i rub onto my joints, and i find it helps immensely. Fish oil is also fantastic - i've upped my dose to 6 capsules a day. If nothing else, i'll end up with great, wrinkle free skin ;o)

I have tried acupuncture recently, and whilst it helped the swollen glands somewhat, it's not something i see myself continuing with - as i came to realise that i really do hate needles and the sessions were quite painful! lol Am planning on finding a good immunologist who can advise me of further treatments that i may not have thought of in helping me stay as healthy and energised as i can during this recovery period.

Whilst it's not a nice illness/infection to get, compared to what other people suffer with, i am happy to take it, become better for it; and, knowing that i am doing all i can to beat it (for the sake of my children and my career, which i love) empowers me and helps me power through all the awful days.

Best wishes to all. :O)

Cocoa123 said...
I suffered from EBV, Chronic Fatigue for over 18 years with Insomnia. I had to take Xanax and Lunesta combined in order to sleep and then Ephedra and coffee to stay awake during the day.  I went from working 65 hrs. week at a prestigious lawfirm in SF, California to being completely bed ridden at the age of 33.  It was absolutely horric.  I must have spent $5000 in out of pocket expenses because my HMO doctors did not know what to do for me.  I am now in full 100% remission.  My father who is a Chiropractor and Nutritionist and still practicing at 90 years old (he looks like Jack LaLane) did years of non-stop research (despite the fact the Medical Doctors said I would NEVER work another day in my life) and finally stumbled across something that profoundly changed my life. 

What was that "something"?

WillHealAll said...
Cocoa123 said...
I suffered from EBV, Chronic Fatigue for over 18 years with Insomnia. I had to take Xanax and Lunesta combined in order to sleep and then Ephedra and coffee to stay awake during the day. I went from working 65 hrs. week at a prestigious lawfirm in SF, California to being completely bed ridden at the age of 33. It was absolutely horric. I must have spent $5000 in out of pocket expenses because my HMO doctors did not know what to do for me. I am now in full 100% remission. My father who is a Chiropractor and Nutritionist and still practicing at 90 years old (he looks like Jack LaLane) did years of non-stop research (despite the fact the Medical Doctors said I would NEVER work another day in my life) and finally stumbled across something that profoundly changed my life.
What was that "something"?

Cocoa123 said...
I suffered from EBV, Chronic Fatigue for over 18 years with Insomnia. I had to take Xanax and Lunesta combined in order to sleep and then Ephedra and coffee to stay awake during the day. I went from working 65 hrs. week at a prestigious lawfirm in SF, California to being completely bed ridden at the age of 33. It was absolutely horric. I must have spent $5000 in out of pocket expenses because my HMO doctors did not know what to do for me. I am now in full 100% remission. My father who is a Chiropractor and Nutritionist and still practicing at 90 years old (he looks like Jack LaLane) did years of non-stop research (despite the fact the Medical Doctors said I would NEVER work another day in my life) and finally stumbled across something that profoundly changed my life.

PLEASE tell us what it was that profoundly changed your life. I want to try it as soon as possible.

http://www.treatmentcenterforcfs.com

Im not promoting this place (even though i'm a patient), but it has a lot of information on the viruses. His Beaumont Hospital video presentations are long but do explain their study and treatment behind EBV (mono), CMV, or HHV6 as causing CFS. I'm getting anti-virals through IV right now for HHV6 after a bad experience with Valcyte, but it is too soon to tell. This Dr. does lay out his treatment plans for any Dr. willing to try and manage antiviral treatment IF you have a confirmed reactivated virus. Trust me, the reactivated virus conclusion is a hard one to get (outside of Drs. like this). I have been to a dozen Dr's in Michigan, not including the University of Michigan and the Mayo clinic recently, and all unsure and tippy toe around the subject due to the lack of studies and tests they claim.

Im not promoting antivirals as the fix but its interesting reading.

Hey all,

My doctor has been treating my EBV with Liposomal artemsinin. 2 teaspoons a day, 3 times a week.

It has made a huge difference (once I was able to get through the herxing) and has even helped lower my hashi's antibodes!

I did have to couple it with acyclovir for a little while on my off days because my herxing was so bad, but it has definitely made a huge impact!

I forgot to add that I do a 10 minute session of Yoga 3-5 times a week. The stretching does wonders & helps me to relax (I have 2 bulging discs in my low back, 2 in my neck & sciatic nerve pain) & it decreases my anxiety as well. I use the one on Dr. Oz's website, it's called "Yoga in 10" & I walk my dogs around the block twice daily if I can. I know it's hard to keep on keepin' on sometimes, but please keep FightingToSurvive!!!!!" Best of luck!

Huh, I always thought EBV was mono. Do you need a specific test for EBV?

If you were to take an antiviral, can people who have lupus take that? Anyone know that info?