very high titers

[michellemuro]

I have been feeling very tired and dizzy with headaches for about a month now. I had some bloodwork done and my doctor sent me the results in the mail stating the my EBV titers were VERY high. So I called him today and he didnt seem to concerned about it. He said that my levels were 4000 and the average levels are around 100. If I dont feel better in 3-4 weeks to come back for further testing. This just doesnt sound right to me, any suggestions?

[Tired of being tired]

Search your phone book and internet to find a doctor in your area who specializes in Chronic Fatigue Syndrome. Some doctors don't even believe in it, but many are making some strides in treatment, using moderate exercise and mild antidepressants! You may have to travel a distance to find a good doctor. Good luck.

[sharonw]

By all means go to an Infectious Disease Specialist, if he doesn't find anything more then he may refer you to a Rheumatologist. EBV has been related to Chronic Fatigue Syndrome and Lymphoma as well. You need further tests. In the meantime take good care of yourself with lots of rest, multi-vitamin and keep your stress down, as hard as that may be since you are worried. Best of luck and let us know what they find.

[Moonlight]

Originally Posted by michellemuro

I have been feeling very tired and dizzy with headaches for about a month now. I had some bloodwork done and my doctor sent me the results in the mail stating the my EBV titers were VERY high. So I called him today and he didnt seem to concerned about it. He said that my levels were 4000 and the average levels are around 100. If I dont feel better in 3-4 weeks to come back for further testing. This just doesnt sound right to me, any suggestions?

I dont get what you have but I have false seizures and I have been born with Velocardio facial syndrome but I have been getting worse not better I lost my hearing when I was born I wear a hearing aid now and I am 20 years old I feel like I am 90 half the time! I get leg pain which is part of my syndrome and I get mild headaches a lot I also cry every night because of my condition I cant even walk down the stairs because I am afraid that I might slip! and I feel embarrest when that happens all my life I been like this.

[KarenZee]

Hi:

I had mono when I was about 19 or 20 yo. 3 years ago I became very ill and couldn't even work. I was sleeping all the time, weak, muscle pain and weakness, brain fog, and GI symptoms that weren't pleasant. The slightest things tired me out. After labwork, it was determined that I had active epstein-barr virus, hashimoto's thyroiditis, iron def anemia, and my adrenals were not working up to par. I was just a complete mess and it was very depressing. After 9 months of not working I resigned my position because it was clear to me that the recovery process was going to take much longer.

I am three years past that time now. I have had periods of more energy and feeling prety good, but I have never recovered to my normal state of health and wellbeing.

In the meantime, I've had gallbladder removal and hiatal hernia repair. I had recurrent corneal erosions, IBS, and now I have a paraesophageal hernia. I have iron deficient anemia again (bleeding from gastritis and probably the hernia). I am feeling pretty pathetic again and wish I could feel better.

I was very frustrated by the lack of knowledge about epstein-barr among the medical community. They look at me like I have 3 heads. They say that my thyroid is functiong normal now, nothing wrong with my muscles even though when I bend down or squat I can't get back up without pain in the muscles and some help. I have been pushed around from clinic to clinic. You can only take so much. At some point in time trying to secure good medical follow through is so exhausting that you give up because it is much to deal with. I've never found a doctor who (except a naturopath which my insurance doesn't pay for) understands what is going on with me and trys to help me feel better.

You need to do the research on Epstein-Barr Virus yourself. Don't relay on the medical community. BTW, having active EBV doesn't necessarily mean you have what it called Chronic Fatigue Syndrome even though many of the symptoms are those of CFS. At least have your doctor do a complete battery of tests to see if anything else may be going on and contributing to how you are feeling.

I wish you well,
Karen

Hello, I wondered if Karenzee is still reading the forum, we seem to have extremely simliar situations.


Thank you

[KarenZee]

Hello!
I don't know if you will get this message as you are listed as unregistered. I am KarenZee. It's been a while since I've been on the forum so I am just seeing your message now. E-mail me if you see this regarding you EBV titers and symptoms. Hopefully by now you are actually feeling better.
Karen

I have been suffering from the same problems since Oct.2005. Our neighborhood had an epidemic of strep --Mono. It seems since then I have never been the same! I had my Gallbaldder removed, and chronic Daily Headaches and nausea for a year now.
I have been to numerous dr. appts and have had no luck besides pain killers,and anti depressants which I hate to take. I have 3 kids and can't afford to be drugged all day. I think mono has a more serious side than the doctors seem to think. I would love to hear from you.
Thanks
Van

[bisja]

I have mono and anemia and am 53 years old would like to talk with anyone who shares these problems
i am so sick of feeling sick please email me

hi im 16 and have had been diagnosed with mono 3 tomes in the past year...i also have had numerous strep throats, iron deficency, and depression diagnosis's. the doctors are finally now tith my third time with acute mono and very high titers are they begin to test me for other things///should i be concerned as to what they might be???