Epstein-Barr and Cytomegalo Virus (CMV) Simultaneously. Complications?

I have EBV bit not CMV. I have been sick for a year and mine started as MONO. I have been bedridden for this whole year.  I have extremely high heart rate and dissiness, lightheadedness and so many more symptoms. Please keep me posted on what happens with you. Did yours start with MONO? Have you been tested for Lyme or Lupus?

I got diagnosed a week ago with ebv and cmv, this after feeling like crap with swollen glands for a while.

I feel like I could sleep forever and don't even get me started with the headaches!! Does any of you experience a killing and constant pressuring headache?

I live in Scandinavia, and apparently the knowledge among doctors when it comes to ebv and cmv simultaniously is not that great. I have been tested for mono many times but I have never had it.

Hey ZODA, I'm sorry to hear you're so sick. Headaches are very common with Mono. The best thing I can say to you is WAIT UNTIL YOU ARE COMPLETELY WELL TO DO ANYTHING. ANYTHING! This is very important. I did not do this, and I am still suffering because of it. Also, please try and find the best vitamins and foods you can. You have to build your body back up. I don't know what kind of vitamins would be available to you, but please, find THE BEST. Things like Colostrum and Acidopholus are very important for EBV and CMV. Also, Cayenne, Lobelia, Garlic, Vitamin C, Green Tea, Cinnamon, and Ginger have major immune-boosting powers. Alternative medicine specialists might be particulary helpful to talk to. It is tempting to not eat or eat junkfoods during this time, but please try and eat as healthy as possible.

Hi Nannen - your post really resonated with me!  I was dxd with EBV and CMV 11 years ago - and while some periods have been better than others, I too, have never been the same since.  I'm quite a bit older than you are - and I'm sorry you're dealing with this at such a young age!  I am currently dealing with some auto-immune issues as well - really, I'm just stil in diagnosis limbo.  As my signature indicates - I've also been dx'd with fibro and chronic fatigue.  Everything changed after a terrible "virus" that left me with fever and bedridden for months as well....had to quit my job.  I was finally tested for both CMV and EBV after an infectious disease doc advised it (my pcp dragged her feet for 6wks) - which were both positive. 

All the symptoms you mention I have either dealt with - or mostly, am still dealing with.  I have had some remission periods when the symptoms were minor - but I'm currently am in a flare that I can't seem to get out of (a year).   I also have a positive and relatively high ANA, with elev. CRP.  I've been seeing a rheumatologist for a year and a half.  She initially said undifferentiated connective tissue disease, and it seems she is waiting for further proof of specific disease, since she keeps testing.  She also confirmed fibro (3rd doc to do so) and the chronic fatigue. 

I'm very curious if you had a nasty and prolonged fever with your onset, along with extreme fatigue, joint pain, elevated liver enzymes and a terrible headache that involved your eyes - hurting to move them?  I also had a rash, loss of appetite with weight loss.  Ring any bells?  I'm wondering now if that might have been the onset of lupus, rather than EBV/CMV.  What have you discovered? 

I'm so glad you're going to Mayo - please let me know what you find out.  I've pondered doing the same thing many times.  At any rate, I certainly sympathize with the difficulties you are facing in terms of trying to live a normal life.  The heart rate and anxiety issues are particularly tough.  Hang in there.  I hope if there are more of us who are dealing with these same issues they will post. 

Take care,

Lucy

Wow. Sorry for my delayed responses.

Zoda- I have heard of recurring EBV. I don't have any good information for you besides what I've already mentioned, but hopefully someone who can help will see your post. I wish you the best. Good luck!

lucysgd- Wow. It seems like you have a lot more going on than I do. I'm sorry to hear you've been dealing with this for so long. I know how disheartening and tiresome it becomes.

I don't know much about any of the connective tissue diseases, so I can't provide any info there. Fibro and CFS have been loosely thrown around as diagnoses for the past three years also, and fibro is what Mayo ultimately diagnosed me with. They definitively ruled out Lupus and RA (at least for now), and now I am currently in the process of ruling out MS and other neurological issues(in my hometown).

As for the symptoms you mentioned, not too many of them ring a bell with me. I actually had little or no fever at onset, and even at my sickest since then have rarely gotten fevers. I definitely had the extreme fatigue, but more of a "generalized achiness" rather than the joint pain. I don't know about the liver enzymes or headaches. It seems like maybe I did have the headache/eye issue though. I did not have a rash, but I definitely had weight loss and a loss of appetite.

Although Mayo wasn't as comprehensive as I expected, it was certainly the most comprehensive of all my labwork, doctor/specialist visits, etc. It is something that I would completely recommend and I cannot emphasize this enough, epecially for someone in a situation as enigmatic as yours. Please, please consider it. I believe there is a real benefit in giving Mayo a try. I don't know what kind of insurance you have, but mine is covering almost all of the cost, which makes it all the more worthwhile.

Thank you for your post. Please keep me updated. :)

Juanita Z- Its good to know more about others who are dealing with the CMV/EBV combination. Thank you for your post. I hope your supplements will help. I, too, feel like I have almost zero immunity that isn't rebuilding. When I went to Mayo, though, the doctor suggested that it wasn't that I had no immunity, but rather a slightly overactive immune system. From what I gathered, the two produce similar symptoms. I doubt that helps you, though. Good luck with your supplements. Keep us posted! :)

Hey Lucy. Lupus and RA were ruled out by blood tests, mostly. There were some questions and examination of my joints, etc. by my doctor to verify. Thank you for your kind wishes. My tests were negative, and I hope yours were/are as well! If you don't get answers soon, I hope you can work out going to one or both of those institutions.

Oh by the way, with your fibromyalgia do you experience severe sensitivity to flourescent lighting? I have had such a difficult time with this. Many times when I am subjected to this lighting, I become dizzy and feel disoriented. I am dizzy a lot, regardless. And also, do you experience any dizziness after exercising? I often feel this same way after a 15-30 min walk. I know these are somewhat common symptoms, but I would like to hear what others have to say about it. Thanks. :)

hi all. i have one suggestion for anyone with ebv/cmv/hhv6. do not waste time. see dr. a. martin lernere in michigan ASAP. he is really one of the only ones you who is going to help.

you need some combination of valtrex and valcyte, long-term.

for those of you who have had CFS for less than 5 years, you are very lucky and your chances of recovery are very good.

i wish someone had told me this years ago!

sue

When I was 16 weeks pregnant I found out that I had EBV and CMV combo. The disease also affected my daughter because she had chronic ear infection and disability delay. that happen 14 years ago. i ALSO HAVE ALL THE SYMPTOMS THAT WAS DESCRIBED THROUGH OUT MY LIFE; SUCH AS FEVERS PHNEMONIA, DIZZINESS, ENLARGE SPLEEN, TIREDNESS, DEPRESSION, MOOD CHANGES, LOW FEVERS,JOINTS PAIN, LOW PLATELETS, BLOOD CLOTS,INFLAMMATION,POSITIVE URION CULTURES, CHEST PAIN, SHORTNESS OF BREATH ETC. WHEN MY DAUGHTER TURNED THREE I WAS ADMITTED IN THE HOSPITAL FOR LOW PLATELETS COUNT AND BLOOD CLOTS AND WAS DIAGNOSE WITH LUPUS AT THAT TIME. i NEVER CONNECTED THE SYMPTOMS THAT i HAVE BEEN HAVING OVER THE YEARS TO EBV AND CMV AND NEVER TOLD MY CURRENT DOCTORS i HAD THE DISEASES> I ALWAYS THOUGHT THE LUPUS WAS CAUSING THE SYMPTOMS. tHANK YOU FOR YOU IMPUT NOW i AM GOING TO EMAIL MY DOCTOR about MY DISEASES

hello to all, I was diagnosed with cmv/ebv in 1993. had nno idea at the time that it does not go away. i was then bedridden for months, and gradually got over it. last march i developeda terrible fever, swollen lymph nodes all over my body, no energy, and my whole entire body felt as if it were on fire, i felt hot all the time. went to 2 docs that did tests and told me nothing was wrong, my husband was convinced i was crazy, and took me to a shrink. which in turn put me on several different meds. the anxiety got so bad i honestly wanted to shoot myself. i finally went back to my hometown to the doc that diagnosed me in 93. i was convinced i had aids, but the test came back negative. i did however find out that the cmv was reactivated, and was told that there was nothing i could do, and no meds to take. since then in feb. i still run fever on a daily basis, and find new lymph nodes swollen every day. my husband does not understand at all and has no sympathy for me. i can not convince him that this is real and there are days when i feel i cant even get out of bed. not to mention my body has hot hot sensations all the time. i dont know if this is from fever. has anyone out there experienced this ??? all i know is that this is miserable. i have been dealing with this for 15 months, and was so releaved to find this website with other people going through this. i know now that i am not alone, and i am not crazy. i know when my body isnt right.maliase, i think they call it, and i so wish it would just go away.my husband says to ignore it, but how do you ignore fever. i am sick and i am tired....very tired...i am not on any meds at all, and i dont know what to do.....but sit here and cry, . anyone out there that can lend an ear, or advice, or let me know you have experienced these things would be much appreciated......................

I am so glad to find this site! My husband has recently been diagnosed with CMV (6/30/09). He has so many different symptoms and I am struggling to find out what is wrong with him. I am just not sure if all of this has to do with the CMV.  His newest problems started on 7/4/09.  He has started having these very strange pain episodes, for lack of a better term. His heart starts beating very hard and his whole ENTIRE body (lips, eyes, tongue, feet, I mean entire body) has this extremely intense burning pain. He says it is the worst pain he has ever felt. He has had 6 of these full on episodes and at least a dozen of them that are not so severe, he says they are tolerable compared to the bad ones. His body hurts all the time! He has a history of migraines and has Tourette's syndrome also, which have both gotten worse. I am nearing insanity... I just don't know what to do!  Please someone help me!

buy milk thistle for your liver, @ iherb.com

get tested for lyme, im 55 have cfs, 15years. this year bloodwrk came back 1 band for lyme.

Wow. We do not really appreciate the good days of having the freedom to get up, get ready and go to a job the freedom it provides you. You rarely think about those who we Leave behind - those stricken with horrible disorders and diseases who would trade their right arm with us - UNTIL the day we can't go anymore - the diagnosis Epstein-Barr Virus - I was just diagnosed but have been sick for months - I'm sorry what is CMV I am still early in all the testing - I want to make sure they cover this - Where would one start; (1) Headaches the size of Mt. Everest (check) (2) salty / metal / burning taste and sensation throat, tongue, pallet, jaws (check) (3) extreme weakness (check) (4) burning sensation running through your body/veins/face/eyes (check) exactly what does antifreeze feel like running through your body - that's it! So tell me
I have had Graves Disease (auto immune) for 20 years - I have had Menierre's Disease (vertigo) for 5 years - now I have EPV? I want the truth is this the BLUE SCREEN of DEATH - I am a big girl I can take it and I have a 25 year old son in Heaven - is this my ticket to ride - or is this just another thorn in my side?