Mono / Ebv for the second time -really bad! Anyone else have it more than once?
Hi everyone,
I have been sick for a month and couldn't figure out what was going on. To make a long story short, after a month of feeling awful, I went to my nurse practitioner to get more blood work done. I had no sore throat all month, but happened to come down with a really bad one a few days before I was going in for the blood work. So I mentioned the throat when I went in. It was really nasty! Neck glands were very swollen too. So she ran a blood test for ebv / mono. I thought, no way could I have that again, I had it when I was 14!
Well, the results came in and they are off the charts. One level should have been 120 or less, and it is 2700!! Another level should have been around 120 also, and was 840. I just can't believe it!!
My white blood cell count actually went down since the beginning of the month, so I don't have any infection right now. (It's 9.1) She had put me on zithromax and I finished it, but now know that wouldn't be helping me in any way.
Had anyone else out there had mono / ebv twice?? If you have, can you tell me how you felt the second time around, and how long it lasted?
Should I go to an immunologist?
That's the short version, but here's the longer story if you care to read on:
See, I was having other problems along with not feeling well and I didn't have sore throat or glands til the end of the month, so no one thought of mononucleosis until the sore yucky throat came. Over a month ago at this point, one night I just felt dizzy and not well, so I went to bed early. The next morning, I woke up with a really rapid heartrate! Like 150+. Was up high for hours, went to the doctor, was 128 and they were trying to treat that. She thought it was due to anxiety, because I have had a horrible amount stress going on in my life that has been causing me to have anxiety. So I don't think the heart is related, but that is what I was concerned about, at first. Heart rate still remains at 100 resting most of the time and I have had 4-5 bouts of sinus tach since. I don't know if the heart is related to the mono, she doesn't seem to think it is... it was probably just a coincidence from all the stress....I still don't know. I have seen a cardio and am awaiting the holter results.
So here's my symptoms, in case anyone is curious. I had mono when I was 14 ( I am 31 now)....and felt totally different then, the first time I had all the classic symptoms. Now....I have felt like I have the flu for over a month now. I have the chills, I am dizzy / lightheaded allllll the time, like my brain is in a cloud! I can't think right. I have horrible headaches every day that only two advil will cure. I just feel generally awful, and it's not letting up. I don't want to sleep all the time like I did the first time around, I am just fatigued and weak. I've also been having ibs like symptoms, so I am a wreck all around.
I wake up very jittery and anxious with a h/r of like 104 or so, again from the anxiety I think, plus all month long I thought there was something really wrong with me! I thought maybe i had cancer, or a brain tumor or something, which sounds crazy I know but I have been so sick, and have had such awful headaches and the ibs like thing.... And the dizziness all the time, ugh! I can't tell you how bad it feels.
I am a stay at home mom, and it is not easy to deal with this and take care of everyone. I just hope I don't give it to them or my dh! She seems to think I won't....but I hope she is right.
Well thanks for listening, I just needed to get it out somewhere. I still don't know what to make of it all, and I just hope I get better soon!
I am posting this on two boards, as I am not sure where the proper home for it is.
Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
My youngest son had both strains of mono within 6 weeks of each other when he was a senior in high school and he thought he was going to die. He was so miserable that it was heartbreaking. His blood work came back fine the first two times we had him tested. He was so sick but everything kept coming back clean. We finally ended up at an infectious disease doctor and he ran detailed blood work. Came back positive for both strains of mono. He told us to take him home and dump him in bed. Said to let him sleep til he woke up. Let him go back to school when he felt he could. Well, he slept for four days straight. But he had been battling this for 6 weeks. He missed another week. Then started back at half days for a two week period. It was the roughest period he had had in a long time.....
Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
I had mono twice exactly 12 months apart.
The 1st time, I had all of the classic symptoms. I missed 2 weeks of work and by the 3rd week, I felt better to return but had to take things slow for a while.
The very next year, I statred feeling bad, run down, etc... I went back to the doctor. He said that I should not have mono again but tested me anyway. Sure enough, the test was positive.
I was only out of work a week that time and recovered really fast. the doctor put me on prednisone. I took 1 dose a could not sleep for 2 days. I never took anymore, just let my body rest.
The doctor said that I could get in again. He said that sometimes the virus lays dormant in your body and can resurface at any given time.
This happened about 8 years ago.
The past November I went to the doctor becasue I was having some of the mono symptoms. The test was negative. After a few days, I was fine.
The reason I mentioned November above is becasue that was the months I had mono both times.
Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
Hi - sorry to hear about your symptoms. i had a virus last year that lasted 8 months...not mono, but some wierd mutated bug that wouldn't let go of my glands and throat. i also thought i was dying from some terrible disease (who has a sore throat for 8 months?) and i wonder how much the anxiety played into this virus. anyways, some of your symptoms sound familiar (weak, fatigue, light headed - this can be all anxiety...). as for the racing heart, it is also likely a symptom of anxiety, but someone once told me that being dehydrated could elevate your heart rate, too. sounds strange, but are u drinking enough? hope you feel better soon. i know how hard it is to be responsible of taking care of everyone and being worried and ill yourself......
best, c
Last edited by tetianainto; 02-28-2008 at 02:53 PM.
Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
Thank you all for posting, and I'm sorry to hear your stories too! Glad all is well now. That is promising.
I got the reults from my holter/echo today from the cardiologist, and everything is okay. I told her about the mono/epv results and asked if it could have caused the tachycardia, and the rate to be resting high. She said yes, it could definitely be a response to that. She said she could give me medicine, but thinks once this goes away, the h/r will stabilize.
I just feel so darn awful, it's like the worst flu ever!! And for some odd reason, though I am fatigued, my brain is like wired and it is hard to sleep. Go figure.
I am going to try posting this in the infectious disease forum as well. I have posted it in the immune disease forum also. I am not sure where it belongs but I know I have seen past threads on ebv so there has to be other people out there.
Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
Just wanted to add - my cardiologist called, and my holter/echo results were normal. I told her about the mono epv and she said she thought the h/r problems could in fact be caused by it.
I am just feeling worse than ever right now.
I read on an old thread somewhere about taking valtrex for epv? Anyone know anything of this?
I also need to know what type of doc I should go to. Immunologist, Infectious disease...I am confused!
With the levels being so high, and me feeling worse than ever I am very worried. I feel sooo sick!
Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
thank you for posting sisyphus3. Have you had ebv or the things you named? Just curious. Thanks for the suggestions on what to get tested.
Can you suggest which type of doctor I should go to?
I have been seeing a nurse practioner and she is good, found the ebv, but I would like to see someone who is more specialized in dealing with these things.
Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
DW had all but the CMV ... she had fibromyalgia ... went on an expen$ive antiviral she had to order from India to keep the number of dollar signs in an affordable price range.
It was called famciclovir (brand name Virovir).
I had a "mono mimic" in the early '80s before a whole lot of viruses could be directly tested for. Probably HHV6. Was sick for years ... night sweats and what-have-you.
Doctors who are known to understand and help with chronic fatigue and fibromyalgia would be the ones to see ... maybe "Lyme literate" doctors as a second choice ... problem could be rickettsial. Or it could be a million other things.
Maybe you can find someone who can test with the Greenechip.
Don't give up until you get relief.
I believe there is a doctor Teitelbaum who has books about chronic fatigue, etc that may be helpful.
Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
EBV and Mono aren't the exact same thing. A flare-up of EBV often presents as Mono in young people, but once you show positive for EBV, you will show positive for it forever, even if it's lying dormant. It sounds like it may just be a flare-up of EBV. That's exactly how I felt with my first flare-up, but my doctor said it was EBV and not "mono".
Try taking extra Vitamin B complex. That helped me a REAL lot during my last flare-up. I had to take it every day for about 6 months until I was finally able to skip doses again without feeling sick again.
Last edited by SentenceDoing; 02-29-2008 at 01:17 PM.
Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
sentencedoing,
thank you so much for posting. I guess I just have straight out ebv but was saying both, because it's so confusing and I'm still learning about this. Can you tell me what your levels were with the second flare up, and how you felt?
I only know two numbers, 2700 and 820 I believe. I will talk to the np again and write down the facts.
Did you have dizzyness or brain fog, and headaches? I feel this way all the time and it is very worrisome.
I talked to my np again today, and she is worried because I am still feeling so bad. Says if I don't feel better by Monday she will refer me to an infectious disease doctor.
I am trying to figure out if those numbers could be so high just from the past infection (which was almost 18 years ago at this point) ...I am just afraid it could be something else, and the numbers are just high from the past...though my symptoms are that of epv I'm just freaking out I guess.
Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
Thanks again for posting, sisyphus. Sorry to hear about your dw! May I ask how long did it take her to get better from the ebv?
I am still feeling terrible. Dizzy/brainfog/headaches, flu symptoms..blah. Talked to my np today and she said if I am not feeling better by monday she will refer me to an infectious disease doc.
Though I have many symptoms of epv from what I am reading, I am worried the high numbers are just from my past infection and maybe I have something worse. Trying to figure out if the levels could be from my past infection (though it was almost 18 yrs ago!). It's probably the epv..but I'm just freaking out cause I feel so bad.
I know this can take a long time to go away, just wish the np would have reassured me of that instead of saying I should be getting better!
Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
Quote:
Originally Posted by wednesday76
p.s. - forgot this before, what is the greenechip? I have never heard of this.
Thanks
It's come out in the past year. 30,000+ diseases tested for $125 ... and it can use any fluid or substance your body produces. Dr. House can be kicked to the curb by this...
DW doing much better. Her problems had been muscle and body aches and DVTs in one leg. The antiviral is needed for a time, then sporadically ... she can feel the need when she has it.
Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
thanks again sisyphus3
Do doctors regularly do this test already, or is it still new and not wel heard of? I am being referred to an infectious disease doc. Will he do the test you think? If I bring it up, will he look at me like I have three heads? lol ..just trying to figure out if this is something standard they do now?
also, was she prescribed the anti-virals for the ebv? I have read some docs giving valtrex for it...but it seems not many docs are good with this ebv thing.
Last edited by wednesday76; 03-01-2008 at 12:08 PM.
ebv levels very high, sick for over a month - jojo?
Hi,
I posted about my ebv story on a few boards, but while searching past threads noticed that Jojo and some others have it, and posted about it...so I am coming here.
I have been so sick for over a month now. very flu-like, chills, brain fog, dizzy, problems with my heart rate, headaches, so many things.
I was going in for more bloodwork last week, to see if anything could be found...and I just so happened to have a sore throat that day (caught something from my kids)...now, I hadn't had a sore throat at all until then, just all the other things I wrote about. My nurse practitioner decided to test me for mono/ebv.
I had mono once when I was 14, didn't think it would come up again since my symptoms were different, and I thought I just caught the throat thing from the kids.
Low and behold, the ebv blood tests came very very high. One level was 2700, another was 800+.
I feel so terrible right now! Like a never ending flu. Sore throat went away in two days though.
I am feeling soooo sick, I went from super mom who was never sick, to sick crabby mom stuck on the couch.
I guess I am just worried. Could the number show up that high from the previous mono 18 years ago?? or is it in fact currently active?
My np told me it was active. But she is worried that I am not getting better. So she is referring me to an infectious disease doctor.
I am worried that I have something much worse and the results just happened to come back positive for it cause of past infection.
Does it sound like a bout of ebv to you? How long does it usually take to feel better?
I have seen that Jojo and some others are on valtrex for it, how long did you have it before the doc gave that to you? Is it still working?
I can't go on feeling this way forever. It's so bad!
Thank you so much in advance for your time. I really appreciate it. I am so scared! If I just knew that it was just the ebv and I will get better...maybe I can accept it better. I can't help worrying I have cancer or something!!!
Last edited by wednesday76; 03-01-2008 at 01:19 PM.
Re: ebv levels very high, sick for over a month - jojo?
just wanted to add...right now I have the chills like all the time and my brain is constantly foggy. Awful headaches very often!
oh and zero appetite, I get hungry sometimes but really have to make myself eat...no interest in food.
but it's like this thing has taken over my whole system!
I always feel fatigued, yet sometimes I have this wired feeling inside, adrenailine like...and have gotten anxiety from it all too, but it feels physical, not mental, kwim?
Now I probably sound crazy lol. I promise you I was normal before this all started!
Do these things sound typical of ebv to you? Can it really wreak havoc on your whole system?
Thanks so much again.
Last edited by wednesday76; 03-04-2008 at 01:22 PM.
Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
We should be well past the three head stage ... but I can't say much on availability ... they were giving it to WHO first to use it where it could have the most impact (and perhaps to work the bugs out where it was safer to do so ... if it gives a wrong answer, lawsuits don't come out of mud & straw huts).
The antiviral was to go after all three of the four horsemen of the fibromyalgia apocalypse.
Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
Hi, wednesday,
Sorry it took a few days to reply.
I actually don't know what my numbers were. I had gone to the doctor because my lymph nodes in my armpits were swollen and sore for a week or more, and he looked at my chart and said I'd tested positive for EBV in the past. He asked if I'd been tired recently, and I said I had been, so I had more bloodwork done, and I guess my levels were elevated again, but when I called to find out the results, the nurse didn't tell me the numbers, but said I was having a flare-up of EBV. She advised me there wasn't much to do about it, but extra B-complex vitamins might help keep my energy up. After that, I started feeling worse for a while. Just like how you said- I got headaches every day behind my eyes, and just felt like I wanted to sleep all the time. It was a different kind of headache than I usually get, and it was as if the intensity of my fatigue caused this headache. And I still felt tired even when I first woke up. And I did feel like I was in a fog, and just exausted all the time. I started taking the B vitamins, but it took a little while until they started working. But I knew they were working, because if I accidentally missed a dose, my lymph nodes would swell up again, and I'd get really tired and fatigued again. I felt better while taking the vitamins, but it was a number of months before I could miss a dose of the vitamins without feeling sick again.
I think I'm fighting off another flare-up right now. My lymph nodes under my arms are a little sore and I'm getting that headache again. On Friday, I took an hour-long nap on my lunch break, then fell asleep again on the couch at 9:15 PM and didn't wake up until 11:45 PM. I never sleep for that long during the day! So I'm loading up on the B Vitamins again!
Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
I had mono 3 times when I was younger (I'm 21 now). I got it the first time when I was 11, and then just kept getting it. What I was told was that I was a carrier. I didn't get the illness from kissing or anything, it was a complete shock to me and my parents for the titers to show up positive. Each time I got it, the symptoms didn't seem that bad except extreme fatigue, although the mono has been speculated to have triggered the juggernaut of my never ending autoimmune diseases. I don't think it would hurt to see an immunologist. I've heard that some people may test positive for mono several times, but that it may be a latent positive from the first infection with the virus. Hope you figure this out.
