My daughter was diagnosed with EBV 2 months ago and it has been a nightmare since. Her internal medicine doctor is great, but has done every test under the sun that all comes back normal. I think he is getting frustrated at this point with us. Is there a different dr we need to be seeing? Infectious disease? Any help would be great!!!
I am confused as to why you think she needs more testing if you know that she has EBV and that all other test results are normal.
I have had mono in the past and now have reactivated EBV. I can tell you, that these two episodes arethe worst that I have ever felt physically in my life. Numerous symptoms, and very susceptibl to secondary infections (pink eye, coxsackie virus etc). I don't think that there is much any type of doctor can do.....as frustrating as it is, I think you just have to let it run its course. I think it is a good sign that your doctor did tests to rule out other possible causes.
When I had mono it took me approx. 3-4 mos before I felt back to normal. I hope and pray that it won't take that long this time.
I will follow your post, because I would like to know what types of doctors others recommend, because my doctor just doesn't seem to understand how dibilitating it is.
I guess at this point i am just looking to get her some relief of some sort, but what i am understanding is there really isnt any.....
Her internal meds dr is working on a referral to an infectious disease dr now. She is a senior in high school and has missed more school in this second semester than she has been there and i just want her to feel better!
This all started back in June of 2012 with swollen lymph nodes and sore throat. They were treating her for upper respirtory infections. Finally in december they dignosed her with EBV. She continually has migraines, nauseua and/or vomitting, side pain, sore throat, swollen lymph nodes, etc.
Is this some of what you experience?
I agree with you that our doctor completely doesnt understand how miserable she is feeling!!!
What a horrible way for her to have to experience what should be a wonderful and exciting year for her.
I understand what you mean about just wanting anything to bring her relief. It is horrible going through this, but it would be worse to see my child suffering and there not be anything that I can do. She is lucky that she has you and that you are compassionate for what she is feeling.
I wish I had suggestions....for her and for myself. If I end up needing to go back to the doctor again, I think I will do some research and see if I can find someone in the area that is very familiar with EBV.
I have some new infomation that may or may not be of use to you. I got some other test results back and I am vitamin D deficient. I know that you said that your daughter has had numerous tests...check and see if they tested for vitamin D deficiency. The symptoms are very similar to EBV. In fact from what I have read, having this deficiency makes it harder for your body to keep EBV in check. For me, it explains all of the bone pain and weakness I am having, that I don't remember experiencing before. Opinions differ, but my doctor said the normal range for vitamin D level is between 30-100. Mine was at 6.8.
I have a reactivation of EBV with symptoms of heart palpitations, extreme fatigue, anxiety, low stress tolerance, body aches, headaches, head pressure etc. I have many more symptoms but won't go on and on. I only found relief when I saw a Naturopathic Doctor which is a N.D. She ordered the correct blood tests (a Viral Panel) on the first visit which revealed a reactivation of EBV. A Naturopathic Doctor in your area might help! I had seen many M.D's, a cardiologist, General Practitioners, Psychiatrist, Therapist etc. After seeing about 5-6 M.D.'s over the course of about 1 year I still had no relief and the symptoms were getting progressively worse that I had to go on medical leave from my job. Only after seeing a Naturopath did I start to see results of feeling better. A Naturopathic Doctor in your area may provide the help needed! You can Google Naturopathic Doctor to find one in your area. The Naturopathic Doctor has changed my life. I now feel like I have my life back or at least it's starting to come back.
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