Expert: Candy - 6/5/2008

Question
Good morning. I have Chronic EBV/CFS. I have tested positive for mono for almost two years now. The mono spot test has shown active the during the entire two years. I was just retested the other day and my IGM was 217. Higher than when I first found out that I had mono. My IGG is 2660 with normal ranges being 0-99. I have swollen lymph nodes,chronic headaches,sleep problems,extreme irrational behavior,sore throat,etc. Shall I continue? LOL. Doctors cannot explain it. They just send you from one specialist to another. HELP!!!! Have you ever heard of this? The worse part is your mind. I feel like I can't do anything. When I first got mono I was running red lights,became disoriented and had no business driving. It scares me because it makes me feel like there is some underlying condition. I have been walking,trying to stay positive and then I loose it. It has really taken a toll on my 14year old son. He even said I would be better off in heaven. That was a powerful comment. Have you heard of someone having active mono for two years? Thanks for your time and your dedication. God obviously has a calling on your life to help other people with this condition. Thanks again.

Answer
The way it was explained to me when I first was diagnosed with CFIDS was that people who test positive for the Epstein Barr Virus had had mono (or had been exposed to mono) at some time in their past (in my case I was exposed to mono when I was 15).  The virus can lie dormant for years before rearing its ugly head (I wasn't diagnosed until I was 42).  The symptoms of CFIDS are the same as those of mono except that they can come and go so you probably don't still have mono but are suffering from CFIDS' symptoms.  And since you have trested positive for the Epstein Barr Virus I would be willing to bet my entire Social Security Disability check that you have full blown Chronic Fatigue Immune Dysfunction Syndrome.  Most doctors either don't know anything about CFIDS or they don't believe it to be a real illness.  You need to find a support group in your area so that you can get a referral for a doctor that can help you.  There is no cure....we will have this until we die....but there are some ways to help with some of the symptoms.  I have a list of some natural "remedies" that have helped me and a list of a few websites where you will find more information and referrals.  Let me know if you would like them and I'll send them to you.  I hope that I have helped answer your questions.  Just remember....you are not alone.  There are many CFIDS sufferers who are going through or have gone through exactly what you are.  Try to stay positive....enjoy the good days and learn to roll with the bad ones because there will be both.  Let me know about the lists....and good luck.