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Posted By : nannen - 9/20/2008 2:56 PM
I was diagnosed with both EBV and CMV simultaneously 3 years ago (at 17), and have never been the same since.  I was nearly bed-ridden for the better part of six months. Since then, I have had ongoing issues with my spleen, severe chronic fatigue, auto-immune issues, and joint pain/inflammation. I have a positive ANA and an elevated Sed Rate. Most recently I've been dealing with dizziness, shortness of breath, rapid heart rate, and anxiety. Has anyone else had the two viruses simultaneously?? I am curious to know what others are experiencing. I once read a post of a woman who did, and whose symptoms were similar to mine in both their nature and their longevity. Because of this, I feel that there must be others with these issues. I will be going to Mayo in a few weeks, but thought I'd try to be proactive in the meantime. Perhaps someone could provide me with some insight. Anything at all will be most appreciated. Thanks.

Posted By : jasjas - 9/20/2008 9:01 PM
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?

Posted By : nannen - 9/21/2008 1:30 AM
I understand how you feel and wholly sympathize with you. I hope you feel better soon. Yes, mine did start with mono (both viruses are mono-causing...I got it from them both at once). I have been tested for both Lyme and Lupus and both were negative. I have a couple of Lupus and Rheumatoid Arthritis indicators, but nothing that could flat-out prove I have either one. Also, I've heard there are many things that could give a false negative for Lyme Disease. One girl I talked to had a friend that tested negative for Lyme disease sixteen times. On the seventeenth, she tested positive. It's just so hard to know for sure.

Posted By : Zoda - 10/31/2008 9:02 AM
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.

Posted By : jasjas - 10/31/2008 10:36 AM
Hello ZODA, Sorry to hear that you have been feeling so bad. I also have EBV and no I never get the headaches but I know lots of people do. You said that the doctors there arent that knowledgeable about EBV well I'm in US, and it's the same here. How long have you been sick with this? I am going on 14 months now and it's driving me crazy. I am going to post a link to another site that is just for EBV and I love this site.http://www.cebv.org/forum/index.php
if that link doesn't work just go to chronic epstein barr virus foundation.

Posted By : nannen - 10/31/2008 12:20 PM
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.

Posted By : Zoda - 10/31/2008 1:40 PM
I was diagnosed EBV 3 years ago for the first time, and apparently it only leaves my body alone for periods.
My doctor keeps telling me it is not the same thing as mononucleoses since it keeps coming back.
At the moment I am just trying to survive the day, with a new job and a kid that has just started school over here =/
I tell you it is no fun!!

Posted By : lucysgd - 10/31/2008 3:25 PM

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


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


Posted By : Juanita Z - 11/6/2008 1:50 PM
Since originally getting ill with mono when I was 17, I've been dealing with chronic viral attacks for 8 years, and I was found to have both CMV and EBV when I was tested a few years ago. I don't have the same energy I had before, but I don't have the fatigue and headaches that most others seem to have. I just keep getting viral attacks that land me in bed for a few days - swollen glands & sore swollen throat, bad fever, no energy. Lately it has been happening as often as every 2 weeks. I'm on a program of supplements (mainly immunity building) with a medical consultant who has a good understanding of the problem, and he tells me by looking at my blood under the microscope that my immunity is improving, but it doesn't seem like I'm getting better.

Posted By : nannen - 11/9/2008 5:02 PM

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! :)

Posted By : lucysgd - 11/14/2008 10:09 PM

Hi Nannen, Thanks for your response.   I'm glad Lupus and RA have been ruled out for you!  Was that because your bloodwork was negative - or a combination of lab and clinicals?   I've just had another round of blood tests with my rheumie - finding out the results next week.  Don't know what they will reveal - but my symptoms have been ramping up over the last year.  I've dealt with fibro long enough to strongly believe that there is something else going on. 

I'm sure there are more tests in my future - and I will definitely be considering Mayo or Cleveland Clinic if there aren't some answers very soon.   My 29 year old cousin was just dx'd w/ MS.  I  hope your upcoming tests are all negative - best of luck with that! 

Thanks again for your post - I hope you feel lots better very soon! 

Lucy

 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


Posted By : nannen - 11/26/2008 5:04 PM
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. :)

Posted By : lucysgd - 11/26/2008 9:17 PM

Hi Nannen - glad to hear your tests were negative!  I just got my bloodwork back, and while the ANA is still high - sed rate is normal, and I don't test positive for any of the specific AI markers (Sjogren's, Lupus, RA, etc.) despite my symptoms.   My rheumie says it's definitely AI "something", indicated by the ANA - but without the lab test to confirm, she can't make a decisive diagnosis.  She  has referred me to Cleveland Clinic and I'm supposed to start Plaquenil.  My potassium is high and now I'm wondering if that isn't the beginning of some organ (kidney) involvement.  Apparently I have some issues w/ my hematocrit and RBC's as well.  Yikes.  I'm hoping we'll get it figured out soon -

As to the flourescent lighting - yes indeed - I have a problem with it.  I also have trouble with sun sensitivity.  When you are walking for 10-15 min, is it in the sun?  I've had fibro longer than I've had the positive ANA - and I always had some trouble with flourescent lighting - dizziness, visual disturbance and headache.  It didn't happen with every exposure, so I think the reactions had a lot to do with other triggers/stresses going on simultaneously.  A flourescent fixture with a balast going out (flickering) made me feel like I would go into a seizure, and I'd flee ASAP.  I don't really have the dizziness after exercising.  But then, I'm not exercising much these days shakehead

I have learned on the lupus board that many folks that are sun sensitive also have the same problem with flourescent lighting.  If you look on some of the Lupus sites (lupus.org) I think you will find reference to it.  But many fibro folks experience this as well.  I'm assuming it's a CNS manifestation in either case.

Take care, Nannen - and stay warm!

Lucy 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


Posted By : ladybugmandy1 - 2/21/2009 10:45 PM
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

Posted By : andrean - 2/22/2009 7:57 PM
Hi,

I was diagnosed with CSF, EBV, and Fibro in Jan 06. I was sensitive to fluorescent lights and sun. They made me nauseated and disoriented. I couldn't use my flat screen monitor for more than 5 minutes at a time (back lit with fluorescent) because it made my eyes blurry and made me wired. I even bought a low EMF monitor but this didn't help since it still uses fluorescent. Someday, LED monitors will be available and maybe they will work for those of us with these sensitivities.

Anyway, I have been working with high potency enzymes through Dr. Jenefer Huntoon in Seattle and I feel so much better! I can now use the computer for long periods of time but not within 2 hours of going to bed or I am so wired I cannot sleep.

You might want to give the enzyme approach a try.

Hang in there!


Chronic Fatigue; Fibromyalgia; Epstein-Barr Virus; IBS; Food allergies to milk, wheat, sugar; sensitivity to sun and fluorescent lights

I have been helped the most with therapeutic enzymes and botanicals prescribed by Dr. Jenefer Huntoon and Bowtech Bowen gentle manipulation performed by Dr. Jenefer Huntoon


Posted By : cmvebvlupus - 3/21/2009 12:37 PM
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

Posted By : Tjbruce - 4/2/2009 5:05 PM
Hello Everyone! Just came across this site and feel I could've written it all on my own with my own experiences..just as you do. I have had all the chronic symptoms for 7 years now and possibly may have come across a true answer to my dilemna. I found a dr. that does not believe in FM and is certain there is a virus that started it all and we just have to find out what it is and treat it. That simple! I can only hope so. I will hold off on sharing details since the last any of us need is another dead end, but I am very optimistic this guy can help and if so..I will pass on all the details that could possibly help you too. I am submitting this simply to give you hope as that is truly the only thing that has kept me going for this long. My prayers are with all of you and I wish you a pleasant evening with less pain!

Posted By : DaDeeVa - 6/26/2009 4:35 AM
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......................

Posted By : starpilot44 - 6/28/2009 10:22 AM
get a lawyer and file for social security disability-you can't work(EBV is listed with SS as a disability) . you feel lousy take anti-depressants. you can't stop the virus. the only thing is to treat the side-effects-other conditions that occur as a result of the auto-immune disease. My wife developed diabetes 45 days after full physical check, she developed cataracts that needed removal in less than a year, high blood pressure, virtually bedridden. Cleveland Clinic waste of time and gas-lot of testing-no treatment.
get a doctor's note for a massage (tax write off) to keep the body stimulated every few months since one is off the exercise routine. quarterly doctor visits and lab work to be on the look out for the next body system failure: the auto -immune controls are broken! ! !
HUSBANDS-we resent the lost of our wife in all aspects, can't heal her, can't help her-been reduced to a caregiver. try to go to diner once a month to get off the couch and out of the house. go to a movie even if you sleep through it. he needs a break in the routine. ask him what to do about EBV-the more he looks for a cure he will realize your true condition and situation. enough rambling going to watch nascar race with her while she is awake. Good Luck!

Posted By : prayingforanswers - 7/13/2009 8:22 PM
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!

Posted By : jamijac - 11/15/2009 12:38 PM
I am so glad I found this forum. I was diagnosed with CMV and Eppstein-Barr on August 1. I spent 6 days in the hospital. I am 55 years old and I have never been so sick. The doctors treating me said they had never seen anyone with these two viruses at the same time. I was out of work for 8 weeks and spent all that time in bed sleeping. It has been 3 months and I am still so tired but that is the least of my problems. I have no appetite, I have weight loss. My biggest problem - liver enzymes were in the high 100s when I left the hospital and now they are nearly 400. I am very worried about this. I am afraid my liver is going to fail. I had a liver biopsy which showed my liver inflammation is much higher than it should be for someone with CMV/EBV. Anyone out there have elevated liver enzymes and did they resolve? Thanks for any help.

Posted By : gee - 12/28/2009 6:13 PM
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.

Posted By : babygirl1022 - 1/13/2010 7:31 PM
shakehead I am 28 yr old mother of 4. Two years ago I got terribly sick. My lympth nodes in my crease of my groin area started to swell, I had fever, nausia, fatigue, headaches, horrible body aches. I could'nt be touched, move, or bearly speek. Now 2 yrs later, Im still sick. I have been diagnosed with cytomegalo virus, then Mono, then heart palpations, cronic fatique syndrom, IBS, Vitamin D defiency, and God knows only what else is coming next. I have been tested for HIV/Aids and every other std, they have all been negative. Lymes and lupus, negative. My antinucluar test is positive one test and neg the next. No one can give me any anwsers. I am not understanding why this is lengering so long. It is like everyone is dumb founded and has no anwsers. I can't have a bowel movement at all with out medication, yet my dr dissmisses any other problems. I am now having a huge lump in my breast with severe pain to both breast and under my arm pit, dr also dissmisses. Can any one tell me where to go or who to talk to to get some anwsers. I feel like my life is falling apart, Im sceared to death.

Posted By : sadie57 - 2/2/2010 12:20 PM
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?

Posted By : Zijaman - 2/8/2010 7:42 PM
Hello babygirl1022 and sadie57,

I feel confident I have a solution for you.

Up until a month ago I didn't know what EBV or Fibromyalgia was and how painful it is and the effects on ones quality of life. But after
seeing both women relieved of the symptoms in less than a week I knew I had to get the word out.

I am not a doctor but I work with one in my wellness company and we have been help people everyday but EBV or Fibromyalgia are the most chronic cases I have come across.



Gary

Post Edited By Moderator (Recoveryme2day) : 2/28/2013 1:37:02 AM (GMT-7)


Posted By : doublehit008 - 10/19/2010 11:35 AM
sad I have the combination too of CMV and EBV yet I have not experience the sever symptoms of these just the sever fatigue and weakness. Plus concentration is not good either. If anybody has cronic constipation with this I like to know if the Gasro doc will look into to make sure it is not from virus.

I have to take shots ( Gamglobulyn??? spelling shots) soon weekly to put in something to help me fight this my own is not doing a good job. Also with a new medication called Valcyte twice a day instead of Valtrex. I see a hemo doc. My number for cmv is 7.9 last month. And my EBV is now active.

I like to share with other people who have the same treatment.

God bless you all smurf

Posted By : CMV confused - 11/20/2010 9:02 AM
Hey there,
Any help would be appreciated as not getting alot of information from my doctor.  My CMV level is 16 but have no idea where that sits!?!  I am now being treated for  GERD as a result but seem to be getting worse. (nearly three months from initial diagnosis).  My Epstein barr was positive but now negative and have chronic fatigue syndrome as a result.

Posted By : Lifeagain - 11/1/2011 5:24 PM
For those with EBV:

9 years ago I was diagnosed with epstein barr virus. After another year of debilitating fatigue and being tested again to see that the EBV factors were even higher and being told there was nothing to do, I discussed with my GYN doctor. I was rock bottom. My life had stopped as I had always known. She, being an advocate for women and really seeking to understand all the issues women encounter, said she wanted to start me on Valtrex. She said to stay on it at least 3 months before quitting and see if there was any change. about the 4th month I felt a bit stronger and was willing to try doing things that required a bit more energy (which would usually put me in bed for a week or so) and found that I was fine. My life became completely normal again.

She had learned about Valtrex, which is an antiviral for herpes related virus, at an infectous diseases conference and had found it to be effective for people with EBV or Chronic Fatigue from other illness like FibroMyalgia and others. She had one patient that after being completely bed ridden resumed her life as a professor after being treated. She had now been on it for 11 years.

Valtrex gave me my life back. I decided to go off after about 4 years and my symptoms returned and and it took me 9 months to regain the progress I had found. It has been 9 years now and I have no fatigue as only those who have truly experienced can understand. My doctor says I can try and take 1/2 a dose and see how it works and try going off, but I don't want to risk it until I have a year to spend in bed. I take 1 gram a day. She said some of her patients even required a stronger dose. When I started it it cost about $400 a month and it was worth ever penny because I had no real life without it. Now it is closer to $100 because there is a generic. I don't know if you will find the same results, but if you felt like I did, you will consider anything.

One draw back is that because it was not initially put on the market to treat EBV or fatigue, some doctors are so weird about using it for EBV or other things. It is a safe antiviral, but like anything can have side effects on some people. I have had NO bad side effects at all. If you doctor is not educated about this drug, consider finding one who will consider it. Maybe even an infectious disease doctor. I wish for all those suffering to find a solution to your fatigue. I understand.

Posted By : Rrose Selavy - 11/30/2011 8:18 PM
This is a really old forum, so I'm not sure if anyone will even read this but I, too, had CMV & Mono simultaneously in high school. I have no idea how I caught it because I was such a nerd in high school and certainly wasn't kissing anybody, haha. But anyway, I can remember waking up one day and just very suddenly feel AWFUL. My throat hurt worse than it ever had before everrrr. Which says something because I had chronic tonsillitis in middle school and had my tonsils and adenoids taken out. The only way I could describe it to my doctor was comparing the feeling to those performers who swallow fire or can swallow swords etc. I literally felt like my throat was on fire. Eating hurt so bad I cried at every meal for upwards of 2 or 3 weeks. I ended up losing a looott of weight because all I could stand to eat was soup. I was unbearably fatigued. I could sleep in until noon, having gone to bed at 10, and wake up feeling like i needed to sleep more. My glands were extremely swollen. My whole body hurt, so achey.

But anywayyss, you weren't asking about having them currently you were asking about long-term. I was diagnosed with CMV/mono, the combination from hell, when I was 16. I am 21 years old currently and I don't feel like I have ever fully gotten back on my feet. I am always tired. I have been treated with anti-depressants, because as you can imagine being tired and sick all the time interfered with my schooling and my relationships, as well as NuVigil/Provigil that is intended to boost energy. All my blood tests would come back clear and okay, with the exception of cmv and mono antibodies being present. I got so tired of the "you're faking it, lazy college kid" look from doctors. Finally when I was referred to an infectious disease specialist, Dr. Duncan, I was diagnosed with fibromyalgia (at 18!!?) and CFIDS (chronic fatigue immuno-deficiency syndrome) and was put on Lyrica for the body aches. I took Lyrica for a while but I ended up gaining about 25 pounds over the course of a couple of years without changing my life style at all. It also make me even more tired which interfered with normal life...again.

After a wholeee bunch of trial and error...I finally feel okay. Not as energetic as I was pre-mono/cmv, but that could just be growing up. I'm now on Savella (marketed for fibromyalgia but technically an antidepressant), Wellbutrin XL (anti-depressant), and trazodone (anti-anxiety) all those are for other issues but I've never felt bettter.

Posted By : StillTired - 12/14/2011 9:36 AM
Reviving this a bit, with maybe a helpful suggestion.

When I initially became sick, I was told I had been recently infected with CMV and HSV. Oddly, no EBV test was done at the time, but much later on I do have positive labs for a prior infection.

Fortunately my doctors were a bit persistent and kept repeating the CMV and HSV tests until they could see development of the longer-term IGG antibodies (as IGM was what was testing positive). Over about a 6 month period, no IGG antibodies ever developed and the IGM tests for both of these viruses went to negative. So, after being told I had a few viruses, persistance revealed that even though I had many positive tests, they were on the acute IGM side and were false positives.

ANA antibodies can cause false positives on these tests - and I've got that as well as ongoing autoimmune issues, and of course EBV. Conclusion in my case was that no CMV or HSV infection ever existed or I was just the miracle person that rid myself of it and all antibodies (Not).

Soooo.. In a nutshell, if you were just told once that you had CMV, I'd recommend asking your doctor for a CMV IGG test just to make sure. You may or may not really have it.

Posted By : CoachForGrowth - 4/20/2012 9:42 PM
I'm very curious about what "alwayspray" said in the post dated 1/29/2012. She mentioned a Dr. by the name of Linn and a sugar free diet. I don't see how to contact alwayspray but am very interested in what she said.

I have a history of Lupus, earlier diagnosed as CFS, but now (18 yrs. later) I'm in the process of a workups to identify it as Sjogren's with complications of Dysautonomia and Small Fiber Neuropathy. Additionally, I've was told I had CMV last year and I also see my lab work from showing I was positive for EBV. Now, I'M HAVING SAME but WORSE symptoms so my doctor is doing blood work.

I feel like my neck and underarm lymph nodes are tender and enlarged, but the doctor doesn't feel swollen nodes. I've had this horrible exhaustion (worse than the usual terrible) and sore throat, lump-in-the-throat, and extreme weakness for about 5 weeks. I AM ALWAYS fatigued, but the recent 5 weeks have been much worse. I suspect she will call and say the CMV and EBV has flared again.

Posted By : Jayci168 - 11/16/2012 12:49 AM
Hi Everyone
I know this is an old thread and have only stumbled across this now as I too have been diagnosed recently (August 2012) with CMV and EBV simultaneously.

My Dr recently diagnosed me in September 2012 with Post-Viral Fatigue syndrome. I am feeling as this is going on three months now, I have tried to go back to work twice and failed due to having relapses.

I just want to know if those who from the start of the thread made a huge improvement and what did you do? I am reading so many negative comments from doing google about this illness and it would help to hear positive ones.

thanks

Hopefully I will beat this.

Posted By : ASTEROIDZ - 2/26/2013 10:24 AM
I am new to this forum.
My blood tests just came back positive for EBV and CMV!!!
Been man-down for close to 4 weeks now, this is terrible!!!
To answer your question NANNEN, yes the headaches do occur and they can be so severe that they cause nausea. I have three kids and need to work, this is such a set back.

Posted By : Jen13 - 3/7/2013 10:39 PM
I was diagnosed with EBV in September. I saw a specialist in December who did more testing. He diagnosed me with extremely high levels of both CMV and EBV. In the fall I was very sick with extreme fatigue, terrible headaches, sore throat, coughing, shortness of breath, dizziness, anxiety, and concentration problems.
Since then I have been in and out of sickness. My doctor has suggested valcyte but I am hesitant due to the warning labels. I have been eating a very clean diet and have tried to boost my immune system with very high doses of vitamin D, and B 12 complex shots once a week. I am a 51 year old women. I am on disability because my fatigue was too severe to handle work. I am hopeful that someday I will be well again.

Posted By : Vanessa Sullivan - 6/11/2013 12:33 AM
Hello all i am 19 and was diagnosed with the EBV virus about 7 months ago
i was taken to hospital before diagnosis and they assumed i had meningitis so they did a lumbar puncture, it came back clear and they sent me home with NO diagnosis, then i was bed ridden for 3 days and taken back to hospital where an MRI was performed and they saw the lumbar puncture had caused a cerebrospinal fluid leak( CSF leak), CSF was coating my back fat so that night they did a blood patch to patch the leak in my spine, every since then i was having ongoing issues and they picked up i had EBV in my blood after they did the blood patch and that the EBV was the cause of why i was so sick that week i went in, they did more MRI's to reassure me that it was just the glandular fever and not another leak that was making me so dizzy, sick, panic attacks, pressure headaches etc...

here i am 7 months later and id love to say i have healed but i still suffer constantly from sever fatigue, muscular aches ( they feel like inflammation all over my body) i was tested for lyme which i do not have, lately i have visited a naturopath and they are going to start treating me soon however i also saw an ayurvedic doctor (almost a spiritual indian herb doctor) and he told me that glandular is almost like a threat is on the body, and i realised the only way i can cure myself is if i remove this threat, now im not going to sit here and say its the MIND because it is a PHYSICAL virus and is horrible and i do believe in medicine , i want to become a doctor and am actually studying pr-med, however im started to think once you can shift that mind frame you can almost boost your health alittle more, and this is by trying to reduce stress, i am an extremely stressed person and the less stress i have the better i have been feeling overall ( less cortisol in the body) i like everybody else WANT a cure but i just dont see a quick easy cure, i also should add my dad has had chronic fatigue for 7 years and i am so scared that will be me but lately i have done a couple things NOT all but some of the things the aryuvedic dr has told me which i think i should pass on to all of you, it had improved my energy and this is eating the biggets meals at breakfast and lunch im talking heaps of food in the day and then he told me to not have or barely have dinner ( i still do but) some days i have implemented this WOW its actually helping but its not just quantity its the food your consuming he said lots of vegetables extrmely nutritious food and i have slightly done that i buy bags of spinach now cook it with lemon and have that with an egg and salad and protein and its actually helping me BUT I SERIOUSLY think i found something that is helping ... ( i know im ranting but im just trying to briefly explain a few things that have helped a little) another thing is!!! DECAF GREEN TEA! i cant have caffeine because of the virus and its apparently not even good to have caffeine when you have it but i saw CAFFEINE free green tea the other day and have had 2-3 cups a day with a squeeze of fresh lemon juice ( soon i will put manuka honey in it too) and wow its actually helping .. before this it was just warm honey and lemon water i was having but now i actually do think this green tea is helping.. try it out it may be in my head but ive felt alot less anxious and stressed lately and also more energy and a calmer feeling! youve got nothing to lose i guess :)

Posted By : Vanessa Sullivan - 6/11/2013 12:38 AM
if anyone has decaf green tea and tries it out for a couple weeks let me know how you feel :) its not a cure but it really might help.. it does take a few days tho! and i have only been doing it for a week but something feels like its helping for some reason!!

Posted By : Jen13 - 6/11/2013 1:24 PM
I had about 6 weeks of almost feeling normal, but tired at night. I do the best when I try to eat all organic, and avoid processed sugar and white flour. Actually all processed foods are bad if you have EBV and cmv. During that time I also took 3 weeks of valtrex prior to feeling better. I tried to walk when I was feeling up to it but I was also very busy. I missed 3 weeks of vitamin b12 complex shots and I completely crashed last week and I am still feeling very exhausted! My dizziness is so bad sometimes that I don't feel safe driving, yet I try to push myself to get out of my house and try to be normal. Sometimes it makes be feel better and sometimes it makes me feel worse. My neice who is 16 is very sick with CFS and has been for around 2years. My other neice who is 19 has it as well.
My younger neice tried valcyte and it helped at first, then she became very depressed and suicidal. It is all so sad! There might be a new medication coming out soon! If I find out anymore information I will let let the forum know!

Posted By : Jen13 - 6/11/2013 1:40 PM
I am feeling like if you feel positive about it even if you are down and do everything you can to feel better, that there will be healing for this disease. I hope you get better soon Vanessa!

Posted By : meryil - 6/19/2013 3:26 AM
Hello everybody! I saw this forum couple of months before but all posts were very old ad i was very bad so i didn't write anything. I was diagnosed with CMV infection last September after 3 months felling very bad. I had seroconversion with very low fever but felt bad for one day. Couple of days before i felt bad lying in bad and couple of days after the seroconversion i felt extremely bad. At that time my baby was 11months and i was breastfeeding. I stopped breastfeeding immediately when i felt bad. The baby is ok. I experienced general malesia, bowel change for 3-4defecations/day, headaches, sore throat for 2months, pain in the lymph nodes, skin strips on the forearms near the palm from the inner side, tickling on my feet. The infection was in June. I started feeling better in September. Never had any intervention for the rectum nor anal sex. In July went in a private lab to test for all known viruses. Only CMV came positive with IgG 938iu/ml ECLIA and can you believe that all doctors said - Oh it is old infection. You have no problem at all. In September I ended up on Pathology. I was lucky the doctor was fantastic and saw my salivary glands and my symptoms and said to test for CMV. In September on ELISA technique the result was 100 with a limit 16-22. This showed that definitely it is a CMV infection. In December i started feeling rectal sensations that last till now. In February i started felling sensations in my breasts and pain in the axylary lymph nodes.The milk path is painful. In March on ultrasound nothing and on mamography nothing. In April o ultrasound cysts in one breast. Still pain in the breasts, sensations in the rectum. Reactivation in the throat many times. In the abdomen also. Painful abdomen with nothing on ultrasound. CONSTANTLY TIRED!!! Starting from April very bad head pain at one point. Twice i felt like something is leaking in my head. Quit my job since my colleagues thought that i don't want to work. My manager called me for a meeting to ask what is going on. He is a doctor and when i told him about the infection he said - oh everybody has this it can not be that infection to cause this problems....
And before this happened i never went to a doctor. Had a perfect pregnancy and perfect delivery with a healthy and beautiful child.
All of you know how it feels.
I am a medical person so i read a lot and this virus is found in 99% of brain tumors, in breast cancers and colon cancers. It is the worst thing ever. I read the post of BABYGIRL1022 she explained all my symptoms.
I ask her if she reads this to post how she feels and what happened with the breast lump. I kindly ask all of you that have any info for a doctor that understands this infection to write me. I plan to buy the drug and take it on my own. I can not deal with this pain and this virus anymore.
From immune busters only gele royal helped me. But only for couple of weeks to feel ok.
This virus is linked for breast cancer in parous women ( i have the articles and i can send you them if you want). With this constant pain in my breasts, this evidence of malignancies and a IgG levels that do not drop i think of mastectomy.
Any of you that have any info please post because not a lot of doctors know about this infections and we can help each other the most.
I ask you with cmv to post about the IgG levels? How fast did they drop? Mine were in March with ECLIA 835iu/ml which is nothing since a 10% +/- if you check in two laboratories is nothing.
I have a lot of info and from what i know is that you can never rid of the virus the only thing is to control it. Keep your immune system up with vitamins, good mood, prayers, love, holidays, nature and check check check your health. Do not miss pap smears, blood checks, mamographs, ultrasounds do all you can to protect yourself. I give my support to all to increase the knowledge for this virus and please feel free to write me if i can do anything.
Let's pray for all of us!
M.

Posted By : PTW - 9/14/2013 3:04 AM
I was diagnosed with both EBV and CMV in August 2013 I also have herpes type 2 for over 4 years, I have been ill for the last 5 months, I have been to the DR a few times & then finally got them to do some blood tests 1st one said viral infection then 2nd reported EBV & CMV just over a month ago. I have also been to the sexual health clinic for other test & so far all negative.

I have had skin flushing/rash all over my body for the last 4/5 months & was so unwell for the first month, sitting in front of the fire shivering, but since then i have felt a bit better but still get shivers & shakes expectationally when i go outdoors & some wind hits my skin.

I went to the Dr last night for some more blood tests, he did not like the skin flushing/rash & also detected a heart murmur, so making an appointment with the NHS Hospital.

Does anyone else have skin flushing/rash, did it get any better?

Monolaurin an extract from coconut oil has been shown to remove the skin of the herpes & CMV virus & that kill the virus, I have been on them for 2 weeks, not sure if they are working, has anyone else tried Monolaurin??

Posted By : jennyO77 - 8/18/2014 12:29 PM
Hi. I had EB 20 yrs ago. Then 5 yrs later I contracted CMV. The Mono that time was so severe that my liver swelled to 3x its normal size and I had to be put on OxyContin for 5 months. I never completely recovered. In fact, I haven't been able to work outside the home since. 6 yrs ago I was diagnosed with Fibromyalgia. My question is, can EB and CMV cause Fibromyalgia? Or is Fibromyalgia, in some cases a form of chronic Mono?

Posted By : BBBloom - 8/19/2014 9:28 AM
Hi
Before you go to Mayo it is good to "google" enough to get most out of visit. They get comfussed by too many symptoms.Two viruses sounds like a defect in your immune system. Look up http://primaryimmune.org/
Get copy of all blood test. Google EBV and CMV antibodies you have/had and compare to what they say on-line.
Do same with ANA and SED rate. ANA can be a sign of Lupus or other autoimmune diseases.

Posted By : BBBloom - 8/19/2014 9:32 AM
Two viruses sounds like a defect in your immune system. Look up http://primaryimmune.org/
Both EBV and CMV are related to herpes and are successfully treated
with Valcyte, valtrex etc. Google research on treatments to get dose and duration.Shots of IG(immunoglobulin) are ok but IV of IG are better. See if you qualify.

Posted By : Love NY - 8/27/2014 7:29 PM
HELP! My mother is extremely sick! She's been in the hospital almost a week with EBV and CMV. She has elevated liver enzymes, critically low blood pressure (was 50/30) and having trouble elevating without tons of fluids, low H&H levels, she was in atrial fibrillation but is now experiencing ventricular tachycardia. The doctors are stumped because they can not find root cause. She is getting worse and worse! We are having her transferred to another facility we hope will know what is causing this. Did this happen to anyone or do you know someone else? We're desperate!

Posted By : Boyko - 10/22/2015 8:06 AM
My daughter 14 years old been sick since end of August.2015 with EBV infection. She was in hospital for a week because she had an high fever and swollen lymph nodes and severe tonsillitis.

Happy that no prescription corticosteroids from our doctor.

When we home her energy level was 0, Only goes to bathroom, sleeps 16 hours. And her legs body was so week so EBV virus cause EncephaloMyelitis. EC

We got home started using homeopatic remedies, vitamins, minerals, virgin coconut oil, echinecia, dandelion roots fresh shake and juices, eleminating sugar and healthy food. What is really helped her high dose of Vit C drip 25000ccIV injection. beam-ray.

Planted wheat grace for juicing but makes my daughter vomiting, also offered beetroot juice doesnt like taste. Says togue bean sprouts juice is good after several trail she said it makes her more sick.

Her energy level index point is 2.5. Cant walk fast slow movement climping 10 stairs makes her tachycardia, feeling sick nauseting.

Checking today website www.treatmentcfs.com is very promising.By doctor MA.Lerner.
Will discuss about possible this info with our doctor for possible antiviral valacyclovir treatment for my daughter. Reading posts of people suffering from CFS due to EBV for long years is really depressing.

Today it seems her infection is coming back her eyes swollen and tonsillar crypt in her back wall of oral cavity.

Few days ago ordered GENE -EDEN online and waiting for delivery in few days. Says has no therapeutic effect but helps to boost immune system.

Mom

Posted By : ro19 - 8/2/2016 7:28 PM
well im seeing this years after the 2008 posting dates but im glad I saw it...I also have suffered with CMV EBV MONO and other issues as well ...all at once.. started in 2013 ....about 2 weeks after a visit to my dentist spent almost the whole year in bed (other than the initial 4 doc visits and recurring specialist visits .. suffered greatly unfort. symptoms were rash extreme fatigue no appetite head neck and eye aches swollen spleen and liver fevers on and off +++ I didnt want the antibiotics I didnt want the anti virals I didnt want my spleen out I didnt want vaccines they were pushing sooooooo I went the natural route .. YES IT HELPED ALOT AND I MEAN ALOT
I still take natural supplements to keep it in remission/dormant
this is what worked for me during the initial 3 months - oil of oregano capsules . immuno g prp. lymph tone 2. vit d spray. b12 spray. liposomal vit c. and a few other supportive tinctures and minerals depending what my symptoms were
so now its 2016 and ive had my first "awakening" of the cmv ebv and mono wow its hard to be going through it again HOWEVER its much less severe than last time ..I had let my healthy eating go stopped working out and had gotten way to stressed with things and WHAMMMMO immune system crash so I totally suggest whatever u do ..EAT HEALTHY STAY ACTIVE AS POSSIBLE (WITHOUT PUSHING YRSELF STAY AWAY FROM DRAMA AND STRESS AND LISTEN TO YR BODY!!!!!!!!!!!!!!!
Hope this helps someone

Posted By : NewGuy102 - 8/22/2016 8:03 PM
i have all of the above lyme, epstein , cmv and more it is just devastating. Did the tic give me all of this?

Posted By : Outtamymind - 9/17/2016 11:11 AM
Wow......I can't believe I've found this! I've been suffering for 8 weeks now with random and varying symptoms!! At first I thought I'd got some sort of diseases like HIV but all my tests have come back negative.
I will be sure to discuss this with my doctor when I next see him because this is unbearable if indeed it's what I've got!
Below are my symptoms.

Night sweats (early on don't get them now)
Sweaty palms and feet (again early on and very minor if at all nOw)
Swollen tonsils (very bad early on but mild when recurring, they do come up a lot)
Mild sore throat (only had this twice and it's very mild)
White tongue (changes daily)
Leg weakness (intermittent)
Jaw weakness (happened once but couldn't eat)
Dizziness (happened once same time as the jaw weakness)
Stomach grumbling (happened after week 4 Upto week 10, happens early now)
Mild cough (1 day only)
Muscle aches (intermittent and recurring)
Diarrhoea (1 night! Stools are much harder to pass now)
Headache (once only)
Balance loss (Infrequent but happens)

So tests I've had done

HIV tests
16 days
18 days
28 days
51 days
61 days
All negative

FBC
At around 3 weeks after symptoms started came back normal?!?!?!?
Sed rate
Thyroid
Liver function

I'm having more bloods done Monday and will see the doctor a week after.

If this is what I've got it's one messed up illness!!

Hope you're all well

Posted By : nikki69 - 9/27/2017 11:49 AM
Cmv, ebv, herpes, shingles... are all complications of a suppressed immune system. Latent viruses like herpes and shingles that 85% if the population has are reactivated. Try having them all at once and bring bedridden for 18 months and counting. Osp-A poisoning (aka Lyme disease) is the culprit. Osp-A from a Borrelia infected tick acts as a fungal antigen on your B cells shutting them down. When your B cells are shut down you're not going to produce antibodies so any of your lab tests for certain conditions are not going to be accurate. They'll tell you its false positive if you do test positive at all. It's not autoimmune (allergy), it's the opposite, sub immune. Have your cd57 (for NK cells, not T cells) checked by Igenex labs. You'll see your immune system in the toilet. Without NK cells you have no first line of defense against viruses or tumorous cancers. No one cares. This country's NIH has no department of immunosuppression, only the opposite - allergy (autoimmune). This is an acquired immune deficiency. The AIDS (not from HIV) of our time. Ever hope to gain wellness and have someone figure out how to solve the problem of B cells shut down without reactivation of them creating a cytokine storm we likely wouldn't survive? Prosecute the LymeCryme first. TruthCures.org

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