Posted 5/8/2009 12:05 AM (GMT -6)
I have had EBV for 14 weeks, ( bedridden for 11 weeks) and have thankfully started to feel a bit bettter and wanted to share what I've done in order to get back to a semi-normal life. I have been completely frustrated with the treatment for EBV....doctors just say, "Go home and sleep". This is not a good enough answer for me. I am fortunate enough to have good health insurance and I just wanted to share and hopefully help anyone who is suffering from this virus. I searched and searched for answers and believe me...there is really not much out there except for out dated and conflicting advice.
First, I have never in my life experienced anything like this virus and my struggle is still continuing. Thankfully, the bad days have started to become less and less. But, in the beginning, I really thought I was dying or going crazy. For the first 2 weeks, I could not move or eat. I finally got the diagnosis when I went to an internist and begged him to test me for everything. My EBV was 1522 and DHEA was 1342. I'm a 37 year old healthy female, the only problems I was having before this were hormonal issues and I was also in severe pain after working out (of course, people responded "you just need to work out more".....in my case, not so.)
My second lab test (about week 5 or 6 of virus onset) the EBV elevated to 2338. I finally broke down and started Valtrex, and it honestly helped ME alot. I wish I would have gotten the precription for Valtrex at the first diagnosis, but I'm hard headed and I'm not a big supporter of pharmaceuticals. But, with all honesty, they have helped me.
The early symptoms I had:
*fatique so bad, like the blood in my body wasn't even flowing; a complete energy crisis
*Dizziness & tunnel vision that both lead to nausea
*Extreme Muscle pain (especially in neck, back and legs)
*Unable to think, eat, almost dulsional
* I had to force water into my body
*Weakness and tightness in muscles (for a week it was hard to walk and when I did get up it was like I was drunk)
*Sensitivity to noise and light
*Heartburn, constipation, severe stomach aches
*ear aches & buzzing in ears
*Lots of tears, frustrations, bouts of anger
I'm about 75%. I still suffer from muscle aches and tightness, spasms, migranes and fatique. But, I am not bedridden everyday like I was for the first 11 weeks.
I read the book "From Fatique to Fantastic" and I'm following the vitamin supplementation in the book. It's alot of pills to swallow, but I will to anything to kick this virus. I do believe it has helped. I had low Vitamin D, so also I've added it 2 X a day. I would highly recommend Vitamin D if you are in bedridden. I wish I would have started it in the beginning of the virus.
I am doing restorative yoga just about everyday or when I can move or feel like it. I started a few dvd's about 4 weeks before I got sick and whenever I can do 5 minutes just to stretch my muscles I feel better. I highly recommend "Candlelight Yoga" and "Meditation for Beginners" they are both gentle and relaxing. I rented them from Netflix, then I liked them so much I bought them both from Amazon.
I am taking the following RX:
AM: Wellbutrin, Celexa, Valtrex (500 mg)
PM: Valtrex (500 mg), Ambien CR (12.5 mg)
Before I got the EBV onset, I was taking no rx drugs.
I have also changed my diet in MAJOR ways. I flew from CA to Portland, Oregon 4 weeks ago, around week 10 of virus (it was an very painful & tearful flight). The doctor did a blood test to find foods that were inflammitory and that my body was reacting to. Among the list were thing that I was eating alot of and I thought were healthy. On the list were eggs, all beans, flax, dairy, and others. I cut them out and I'm not having the bad stomach problems and pain. I know this is not for everyone. But, I am determined to not eat anything processed or in a box. This is out of sheer determination to heal my body and be healthy.
I now only ocassionally eat meat and my diet consist of mostly veggies and fruit. I use our juicer ALOT (atleast once daily, mostly 2 times a day). And...those of you that say eating healthy is expensive, I swear, it's not! At Costco, you can get in HUGE amounts organic carrots, celery, grapes, apples, oranges, berries, kiwi, plums. I am able to load up for around $55 for the entire week. This also provides enough fruit and veggies for my husband and daughter.
I hope that anyone that is reading this this that has EBV is surrounded by love, compassion and understanding. It is an unexplainable experience and I wish I could say that it has been easy. My only advise is to listen to what your body is telling you and give it what it needs. I can't tell you the things I have done will help anyone else, but I have reached out to many doctors and I recieved no real answers. I wasted alot of energy to try and find "the answer" at a time when I had very little energy available. I have a new found compassion for people with chronic illnesses. I hope that by sharing what I went thru, I can help anyone who is able to find this information.