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wednesday76 02-28-2008 09:51 AM

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.

Take Care. :)

ibake&pray 02-28-2008 12:07 PM

Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
[COLOR="Navy"]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.....[/COLOR]

tlhalabama 02-28-2008 02:19 PM

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.

tetianainto 02-28-2008 03:49 PM

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

wednesday76 02-28-2008 05:30 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. :)

wednesday76 02-28-2008 05:40 PM

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!

Thanks for listening. :)

Sisyphus3 02-28-2008 07:39 PM

Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
Get tested for HHV6, Parvo B19 and CMV. They all can hang around and come back now and then like EBV can.

Find out for sure what you are and aren't locked in a battle with.

wednesday76 02-29-2008 07:42 AM

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.

Feeliing worse than ever!

Sisyphus3 02-29-2008 10:36 AM

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 [i]years[/i] ... 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.

SentenceDoing 02-29-2008 02:14 PM

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.

wednesday76 02-29-2008 06:20 PM

Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?

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.

Thanks again for posting. :)

wednesday76 02-29-2008 06:25 PM

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!

Thanks again for posting. :)

wednesday76 02-29-2008 06:27 PM

Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
p.s. - forgot this before, what is the greenechip? I have never heard of this.

Thanks :)

Sisyphus3 03-01-2008 04:18 AM

Re: Mono / Ebv for the second time -really bad! Anyone else have it more than once?
[QUOTE=wednesday76;3465541]p.s. - forgot this before, what is the greenechip? I have never heard of this.

Thanks :)[/QUOTE]

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. [i]Dr. House[/i] 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.

wednesday76 03-01-2008 01:05 PM

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.

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