Discussions By Condition: Infectious diseases

very high titers

Posted In: Infectious diseases 29 Replies
  • Posted By: Anonymous
  • July 29, 2006
  • 05:34 AM

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?

Reply Flag this Discussion

29 Replies:

  • 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.
    Anonymous 42789 Replies Flag this Response
  • 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. ;)
    Anonymous 42789 Replies
    • August 10, 2006
    • 06:49 PM
    • 0
    Flag this Response
  • 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.
    Anonymous 42789 Replies
    • August 21, 2006
    • 11:46 PM
    • 0
    Flag this Response
  • 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
    Anonymous 42789 Replies
    • August 27, 2006
    • 04:28 AM
    • 0
    Flag this Response
  • Hello, I wondered if Karenzee is still reading the forum, we seem to have extremely simliar situations. Thank you
    Anonymous 42789 Replies
    • October 5, 2006
    • 02:44 PM
    • 0
    Flag this Response
  • 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
    Anonymous 42789 Replies
    • February 17, 2007
    • 11:26 AM
    • 0
    Flag this Response
  • 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.ThanksVan
    Anonymous 42789 Replies
    • February 20, 2007
    • 03:45 PM
    • 0
    Flag this Response
  • 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
    Anonymous 42789 Replies
    • February 24, 2007
    • 03:24 PM
    • 0
    Flag this Response
  • 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???
    Anonymous 42789 Replies Flag this Response
  • I am so sorry to hear you have been going through so much this mono and anemia stuff is rotten, I got some tests results in the mail from my doctor I had them redo the epstein barr test so I can see where its at but do not understand what it all means and can not get any doctor to give a call back. Does anyone here know how to read these tests or where I can find a place on the net to tell me what they mean? We all just have to hang in there to get rid of this stuff put myself on a multivitamin and a whey protien drink that is very high in lysine and other aminos and I feel like it is helping. Let me hear how all are doing and if anyone knows about these rests and how to read them..
    Anonymous 42789 Replies Flag this Response
  • Hello,I cannot believe I stumbled on this...I have been having these same symptoms for several months now and have been out on sick leave...I have NEVER taken off work in 25 years! My muscles hurt so bad that I can't climb steps (Not stairs...steps!) I have difficulty getting up out of a chair....I am so tired! My joints hurt also...my EBV was over 3,000 but I do not have symptoms of mono....my Dr admitted that he had no idea what else to do...he made me an appt w/ a rheumatologist and they can't see me for 2 months! I am at a complete loss.....
    Anonymous 42789 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Hello,I cannot believe I stumbled on this...I have been having these same symptoms for several months now and have been out on sick leave...I have NEVER taken off work in 25 years! My muscles hurt so bad that I can't climb steps (Not stairs...steps!) I have difficulty getting up out of a chair....I am so tired! My joints hurt also...my EBV was over 3,000 but I do not have symptoms of mono....my Dr admitted that he had no idea what else to do...he made me an appt w/ a rheumatologist and they can't see me for 2 months! I am at a complete loss..... Hi I am still dealing with the virus but am slowly getting better but still deal with alot of pain in my neck lower back and legs which makes it almost impossible to do much of anything. When I do push myself I usualy feel pretty bad for a few days but still am better then I was a couple months ago.
    Anonymous 42789 Replies Flag this Response
  • I don' t know if anyone still uses this board. It looks like this is all from last year. But I just found it and am amazed at the similarities I'm having. I had EBV when I was sixteen and have lived an active life, normal life since then. Even more than that, I spent 8 years in the military and successfully completed three survival schools on the top of regular boot camp. Now at 36 and two kids later, I have turned in to a medical nightmare. In February, three days after I started physical therapy for protruding discs in my neck with ultrasound therapy, I started running high fevers. After five days of fevers above 102, I finally went to my doctor's who ruled out strep and the flu. She started looking for lupus, EBV, and Lyme. I also had Lyme three years ago and was "supposedly" successfully treated. Since this episode in February, I am in continuous pain and increasing muscle weakness besides being beyond exhausted. My daily naps last 2-3 hours and I can barely force myself to wake up from them. Mornings are aches in the every joint with swelling in my feet. My rheumatologist has found evidence of bursitis and tendonitis throughout my whole body and I've just recieved blood test results that my cortisol levels are very low (adrenal issues). I couldn't believe reading Karen Zee's writing how much I have the same issues. My EBV titres are in the 3000's but I understand that means it is a very old infection, not new. My primary care doctor says all along she was sure I had mono again because my ALT and AST (liver function tests) are very high. My rheumatologist is certain it's an autoimmune attack on my thyroid but can't get any blood tests to back it up. If Karen Zee, or anyone else with similar symptoms reads this still, can you please give me an update or suggestions? I don't want to live like this forever. I'm on pain killers, prozac to reduce muscle spasms at night, valium for muscle spasms during the day, steroids repeatedly to bring down all the swelling, etc. Last year I never took any medicine. Now I have a large bag of daily medicines that I seem to be living off. My doctor's don't have an definite answers for me, they just keep looking. I go to physical therapy and they suggest things; like I have many but not all points for fibramyalgia. If someone has a possible diagnosis for me, I'll take that to my doctor to look for more. Thanks so much for any help anyone can offer. Christine
    Anonymous 42789 Replies Flag this Response
  • update from previous letter.....after much labwork my doctors believe I may have polymyelitis......I will have a muscle biopsy to diagnose this for sure...I went 60 miles out of town to find a Rheumatologist....I hope this is not true because I will be treated w/ prednisone but it will be good to have a diagnosis...I was beginning to think I was crazy.
    Anonymous 42789 Replies Flag this Response
  • update from previous letter.....after much labwork my doctors believe I may have polymyelitis......I will have a muscle biopsy to diagnose this for sure...I went 60 miles out of town to find a Rheumatologist....I hope this is not true because I will be treated w/ prednisone but it will be good to have a diagnosis...I was beginning to think I was crazy.No....wrong again...they are still looking, more lab work....but, they have started me on the prednisone which has given me some relief with the muscle pain but the back pain and weakness is still terrible...this is getting hard to manage. My Doctor is still certain that its not EBV regardless of the high titers!
    Anonymous 42789 Replies Flag this Response
  • I tested positive for mono 4 times during a 5 yr span. I am currently doing well, working out and such. My energy is about 85-90% where it used to be. I think this could be corrected by better sleeping habits. Anyways, to my point, have any of you tried VIBE treaments, or Hyperbaric Oxygen treatments. These were INCREDIBLY beneficial. I had been taking vitiamins, eating decently healthy (drawback being soda). Still, I wasn't quite we're I wanted to be, like I was hitting a ceiling. My mom convienced me to try the VIBE treatment. I did 2 sessions. I GOT SICK. I was infomed that this was going to occur, but I didn't buy it at the time. As terrible as my body felt, my mind was beginning to feel good. I couldn't sleep that night, not so much because my body ached, but because my mind hadn't felt this alert in so long. It was nice. It was like being 15 again. Anyways, I have continued using the VIBE treatement every month or so. It takes about 2 minutes. Look it up on the web for more info. It is similar to the RIFE treatment. The hyperbaric treatment is like a massive boost for the body. It made me feel energetic, and well, clean (oddly enough). My nails became as hard as steel, while my hair and skin became as soft as a baby's (I'm not kidding). The treatment has been reported to enhance dietary suppliment use (vitimans) and antibiotics. The only draw back with this, is it is usually pretty expensive. Just some advice. You also might want to try something called ZIP FIZZ. It is a vitiman drink that actually tastes really good. It has massive amount of B-12 (44,000% of DV), both kinds (there are 2). Plus it has a bunch of other vitimins, like Vitamin C, B, Nicain, A, and on. I think many of those suffering from CFS, and reoccuring mono, may have a massive B-12 definciency. This is just a hypothesis, so take it for what it's worth. I hope this can help some of you. Try doing some research as well to see if any of the above mentioned treatments are beneficial. Oh, and another thing. Try tapping your glands along the upper portion of the breast plate, just below the collar bone. A little bit below the shoulder area near the armpits as well. It find it helpful in clearing up allergy symptoms.
    Anonymous 42789 Replies Flag this Response
  • Have you ever been tested for anti-thyroid antibodies? Auto-immune Thyroiditis (Hashimoto's) causes a lot of these symptoms as well. I have chronic active ebv and Hashimoto's and experience a lot of these unpleasant symptoms. I'm taking 2 different meds for Thyroid that help-a little!!
    Anonymous 42789 Replies
    • October 9, 2007
    • 08:51 PM
    • 0
    Flag this Response
  • 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?when my daughter was 14 years old she was diagnosed with a very rare autoimmune blood disease called thrombotic thrombocytopenia purpura (TTP). At 12 she was initially diagnosed with ITP, a non fatal type of blood disease, but it never was that it was ttp, it just didnt show up right away. I am not telling you have this, but the fist indication that something was very wrong was a lot of very bad headaches, strange fatigue, bruise and extremely high titers. The bruises didnt seem that odd since she was a highly competetive soccer player, but as it turned out they were a big indication of something serious. I would suggest to you to see a hemotologist, just to be sure. Im sure you have had a complete cbc, but if you havent you want to have one to see what your platelet count is. Its just a pinprick on the finger, no big deal.
    Anonymous 42789 Replies
    • January 28, 2008
    • 03:43 PM
    • 0
    Flag this Response
  • Hello:I just ran across this message board. I never heard of EBV until I lost vision in my left eye last summer. I woke up one morning and could not see out of my left eye. After 2 months of testing I was told that my titer levels were high enough to suggest EBV. The retina specialist told me that the virus had attacked my eye causing lesions on my retina which in turn caused permanent optic nerve damage. I'm still working but have a difficult time of it. My employer is frustrated with all the mistakes I make and has suggested that I go out on disability. I'm not sure if I qualify for disability. This has been so frustrating. I feel like I've been in a bad dream for 7 months and I'm ready to wake up now. No one seems to understand. And I think I'm having symptons of cronic fatigue or fibromyalgia. Any suggestions or comments would be greatly appreciated.
    Anonymous 42789 Replies
    • February 6, 2008
    • 04:43 AM
    • 0
    Flag this Response
  • Here is a website with more information about EBVhttp://www.cdc.gov/ncidod/diseases/ebv.htmGood luck to you all and thanks for all of the advice.
    Anonymous 42789 Replies
    • February 25, 2008
    • 05:32 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.