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rscott
New Member

Date Joined Sep 2005
Total Posts : 2

Posted 9/16/2005 4:55 PM (GMT -7)

Hello,

I have been suffering extreme chronic fatigue from high levels of the epstein barr virus. Is there anyway this virus can go dorment? Are there any new drug treatments for this sickness. I can no longer work or do anything. I have been suffering for the past year and a half. Please help.

rscott

erin.K
Veteran Member

Date Joined Mar 2005
Total Posts : 3148

Posted 9/16/2005 5:18 PM (GMT -7)

Hey there!

I read a post by SNOHARE in the thread "Please, Help"...give the post a read through, it discusses a lot of the "syndrome" effects of CFS.

I'm looking for some other threads for you that might be relevant to EBV related CFS.

otay??

erin ( erin schmerin to you)

CaMama
Veteran Member

Date Joined Mar 2005
Total Posts : 1794

Posted 9/17/2005 10:26 PM (GMT -7)

Hi rscott, Erin sent me your way from the arthritis forum.

In Feb 2003 I came down with an acute case of mononucliosis caused by EBV. I had been dx w/mono when I was 15 - typically you should only get it once in your life, but lucky me got it twice. Mono apparently can be caused by either EBV or the cytomegalo (sp?) virus - and if you're lucky enough to get it twice - the doc said that would be the reason why. One doctor told me many doctors misread the test results due to the way the readings are - I have no idea if that is really true.

But, I digress....I haven't researched EBV since I had it, but from what I did find was that there are NO answers when it comes to EBV. If you do a google search on it you'll find info contradicting itself all over the place....so, I guess what it comes down to is how YOUR body handles EBV and if you have any other underlying causes that may be making you feel like you are not getting better. You will see some people say, you get it, you get over it, it's gone. Other people say it's there for life and you will always have to be careful. You'll find info stating that if you DO NOT take care of yourself when you have it, it will drag on and on. Some say very strict dieting will be your cure all.

I think there has been studies done linking EBV to CFS and you'll probably find that on the web as well. I should probably do the reasearch myself and look at these links the other have posted.

If you have active EBV I would:

1. get time to take care of yourself - I was down and out for over 7 months and then had a pretty decent relapse by month 9 - my health and fatigue has been an uphill battle ever since.

2. get tested to make sure you don't have anything else causing additional problems - Because of my other issues with arthritis and autoimmune issues, it's anyone's guess what the culprit is for my situation. I had liver issues with Mono and then again this past year - they told me mono induced hepatitis disappears when the mono goes, so I don't know what to blame this time around for sure.....when my liver enzymes elevated again last december, I felt exatly like I did w/mono - unable to stay awake among other things.

3. look in to the various articles you can find about it and become as knowledgable as you can. though there are no drugs (that I know of) that can "cure" this, some people DO swear by certain types of eating habits that have helped them feel much better. It could be a bunch of hooey, I don't know.

4. know that it will/can take a long time to get over it you need to be patient. It takes so little to tire out when your sick w/this. My relapse was brought on by very little - so, take it easy, take it slow.

5. Find yourself an infectious disease doctor, oncologist, or whichever doctor is more familiar w/this type of disease rather than dealing w/just your PCP at least for a consultation and evaluation visit. I was dx by infectious disease when admitted to the hospital in 2003 - mono had caused the liver to swell and enzymes to skyrocket, my spleen was enlarging, and I was completely dehydrated. However, I wasn't treated by him beyond the hospital stay...so, I don't know who to recommend for sure.

I'm not sure if this was any help to you...I hope it was something...I am sorry to hear you are going through this...unfortunately, I know exactly what you are going through! I hope you feel better soon, take it one day at a time, and be patient. It's hard to have to work around something like this not know what your body suddenly can and cannot do and finding that walking to the mailbox and back is suddenly means for a very long afternoon nap.

Post Edited (CaMama) : 9/18/2005 10:02:04 PM (GMT-6)

Tension
Regular Member

Date Joined Aug 2004
Total Posts : 22

Posted 9/19/2005 6:27 AM (GMT -7)

Its not the epstein barr keeping u sick unless its active now, if they have done a test for past infection then thats a past infection and its not whats keeping you poorly now, i've been told the same massively high for EBV but thats in the past they did a test on it that people that feel normal have massively high for EBV aswell.

snohare
Veteran Member

Date Joined Oct 2004
Total Posts : 2037

Posted 9/19/2005 2:04 PM (GMT -7)

Virology 1.01

Once you are infected with a virus - any virus, not just EBV - you will always have some viral particles lurking in your body, waiting for the chance to get reproducing again. You can take that to the bank, inscribe it on stone, write it on the moon - no virologist will disagree. The body's immune system keeps the numbers down - white blood cells that have learned to recognise EBV are always patrolling, and it is these antibodies that the tests for EBV actually count.

My guess is, ( and this is just what I've heard mooted elsewhere, I have no idea how accurate it is) that the test results can actually mean more than one thing, if they come back abnormally high or low. For example, if the antibodies are busy beating off an EBV attack very effectively, you may feel well enough, but have so many spare antibodies floating around that it seems like you should be dying. What may in fact be happening is simply that something (not neccessarily the virus) has triggered that immune response. It is widely believed that autoimmune diseases may well start off when the immune system starts to mount an aggressive response to innocuous substances that in some way resemble some kind of pathogen. Alternatively, it may be that the immunoassay test does not recognise antibodies that are latched onto viral particles - so your immune system may be fighting the mother of all battles, you feel lousy, and yet the numbers come back as low !

Just to confuse matters, CFS sufferers may actually have a problem whereby whatever causes their fatigue also gives them the equivalent of an immunological "broken arm"; so no antibodies may not mean no active viral load, or many antobodies may not mean an effective response. That may well be a major part of the CFS puzzle. But the broken arm idea is a theory that the jury is definitely still out on.

So, you could have EBV and not get CFS, then without the handicap of an ineffective immune response you never get ill with EBV again. Or you could get EBV and recover, but develop CFS and always thereafter have to worry about overdoing things lest you suffer a relapse. (I know former EBV sufferers who have this problem.)

If you're not confused yet, you're just not paying attention. Clear as mud, eh.

My experience is, the people who state definitively that you cannot get it twice are the people who have only had it once....denial, anyone ?

CaMama
Veteran Member

Date Joined Mar 2005
Total Posts : 1794

Posted 9/19/2005 6:13 PM (GMT -7)

It's a tricky puzzle, that is for sure - all these autoimmune issues are! They are so interlocking it can be tough to figure out which came first and where the cycle can be broken, if at all.

The doctor who said many of his collegues misread the test results said that there were variations on the reading - having in your system, having it active, etc.

I was told that most people (I think 80%ish) carry the EBV virus. You can get it as a toddler (apparently a high percentage of people contract EBV between the age 2-5 as a flu) or older as mononucliosis. (Technically, EBV causes Mono, not the other way around.) The intesities of it vary - as with any virus. The virus comes and then is supposedly just living and hanging out in your throat and periodically becoming active and though you are not sick, you are contagious through your saliva (a cough, a sneeze, a kiss.) But, as snohare said - those who say it doesn't affect you more than once haven't had it more than once!

Soooo, I guess because THEY say 80% of us are walking around with the virus periodically affecting others, and the bulk of the population is NOT in bed with mono per se, THEY assume you only are affected by this virus once?

In my case, I just cannot be sure what part, if any, EBV is playing in my life now. I've had arthritis since I was a child. My autoimmune problems tripled during my 2nd pregnancy 4 1/2 years ago, and I had mono 2 years after that. . . since then, I'm typically "not well." Needless to say, fatigue is a big part of my life and always has been.

Let us know how you are doing. I hope you start feeling better soon.

erin.K
Veteran Member

Date Joined Mar 2005
Total Posts : 3148

Posted 9/19/2005 8:22 PM (GMT -7)

hey Mr. Scott ....where the heck are you???? i hope you check on your replies soon . we need to hear some signs of life! LOL.

to contribute to this EBV thread. in 2001 i had a surgery...i couldn't really shake off the complications from it (had abdominal surgery w/ oopherectomy, appendectomy, chocolate cyst removal and part of the bowel to which it had adhered)...and developed peritonitis soon after.

had been having joint problems since age 14...but after the surgery 2001, i had positive Rheumatoid factor and ESR (@ age 20) . and basically felt like crap. the rheummy ran EBV and the whole mono labs. came back positive for both. he said under my condition it was a chronic mono and from being compromised picked it up just like anybody else. i don't even bother having labs done on them because once you have titers, they'll pretty much always be present.

you're right with the stats...mostly everyone who's left his house has some titers of EBV.

now you just have to do the things that make you feel more physically and mentally well.

i normally do not post here because CFS is not my main issue...although with my disease process i do suffer extreme fatigue but it stems from pain, inflammation, med side effects and systemic complications from RA and CD.

and remember happiness, love and laughter are sometimes better than any medicine out there.

erin

snohare
Veteran Member

Date Joined Oct 2004
Total Posts : 2037

Posted 9/20/2005 4:55 AM (GMT -7)

A "chocolate cyst", eh ? I always knew that women had to have an organ devoted specifically to that food product...but what's its' Sunday name, I've never heard of it ?

Who's Mr Scott ? ( Note to Trekkies; I already know about that Mr Scott.)

erin.K
Veteran Member

Date Joined Mar 2005
Total Posts : 3148

Posted 9/20/2005 12:21 PM (GMT -7)

hah! LOL. i wouldn't want that on any sunday! actually, the chocolate cyst looked a heck of a lot like a candied apple (it's where blood and tissue forms on the ovary...a benign tumor) and the appendix looks like a breakfast sausage link! eewwww.

and mr. scott is RSCOTT! i suppose though he has been "beamed up" somewhere.

hello?? are you out there??

erin

Tension
Regular Member

Date Joined Aug 2004
Total Posts : 22

Posted 9/21/2005 7:48 AM (GMT -7)

I was diagnosed the same and i've been the same as you for 5 years post fatigue which leads me to beleive its not post fatigue and that i have an underlieing cause what i dunno me thinks virus

Tension
Regular Member

Date Joined Aug 2004
Total Posts : 22

Posted 9/21/2005 7:49 AM (GMT -7)

No treatment as usual

rscott
New Member

Date Joined Sep 2005
Total Posts : 2

Posted 9/25/2005 10:14 PM (GMT -7)

Hello Jennifer and everyone,

I am still around, crawling around. I had undergone more tests. I found an infectious desease specialist who is also an allery specailist. She specializes in treating CFS patients. First, she found two amino acids completey missing in my protein profile. Which she said was very odd and I must supplement them. Then she told me, not only do I have very high EBV levels, (I must have had a very bad case of mono, but never realized it was what she said) but also high herpes simplex 1 and herpes zoster (I had Chicken-pox and encephilitis when I was 35, I lost 30% of my hearing), and I have even higher herpes 6.

Herpes 6 is what she is worried about. She said this was the cause of my fatigue. For some reason there is a connection with herpes 6 and MS. And possibly other major deseases. She also found my immune system is extremely low and must be boosted immediately with Immuno-globin. She also prescribed an anti-viral drug. She said all these high herpes are having a party and my immune system is paying for it. By increaseing the immune system and taking the antiviral drug she thinks she can suppress these viruses and I will get my energy back. I hope.

Thank you all for your nice comments

I guess I should have never went snorkling down in New Orleans.

rscott

CaMama
Veteran Member

Date Joined Mar 2005
Total Posts : 1794

Posted 9/26/2005 7:13 AM (GMT -7)

HOLY COW!

Well, I'm SO glad to hear you found a doctor who gave you some answers! THat is a rare find. I hope these meds help put you on the mend asap.

Do you think this was contracted from snorkeling in New Orleans? Wow...when I was 15 I was my family when to Carson Nevada and they all got ice cream, I was so hot I just wanted a glass of ice water - BIG mistake. My abdomen fought a viscious war for a long time because of it! I contracted the parasite ghiardia (sp?) and almost failed 9th grade because I was out for so long before they figured out what was wrong with me.

Feel better soon! I wish you good health asap. It sounds like you've had more than your fair share of illness and deserve to get on the road to health.

watercolour
New Member

Date Joined Sep 2005
Total Posts : 4

Posted 9/27/2005 4:14 PM (GMT -7)

^{_{I still cannot figure out how to make the font bigger nor put an icon where I want it so sorry this is so small.}}

_{^{Anyway, RScott, how blessed you were to find a dr. who dug as deeply as she did. I had a dr. once who was like that but left her because she was kinda crazy and extremely disorganized. There staff lost my complete medical files!!!}}

_{^{Anyway, as far as Epstein Barr goes, she found that and cytamegalovirus in me. Both were active at the time. No one has mentioned B12 shots. She gave me those on a weekly basis and they worked wonderfully for the fatigue. I too have much bigger illnesses to deal with, two that I didn't have then, but can't say enough about B12 shots. In fact, may asked my PCP to give me one when I go in next time.}}

_{^{It was also explained to me that once you have these illnesses the symptoms come and go. She said that after a regular illness such as a cold, bronchitis, etc., you have to start over in treating the Epstein Barr with vitamins, rest, etc. as it sticks it's ugly head out again. The CM virus, not sure.}}

_{^{Again, RScott, it's so great to see that there are still dr's out there that look "outside the lines". Hope you feel better soon.}}

_{^{In Christ,}}

_^Watercolour

KKeen
New Member

Date Joined Sep 2005
Total Posts : 2

Posted 9/29/2005 6:27 PM (GMT -7)

Hi Everyone,
Just started searching some of these forums to see if I can find out any answers for my mom who is suffering for EBV. She is starting to get so depressed and I keep telling her to get involed in a support group or an on line chat to talk to other going through the same things. rscott, I would really love to know the doctor you found that was even interested in taking your case, cause nobody will talk to my mom. I want to find anyone that will try something! Anything!

Thanks,

KKeane

Post Edited (KKeen) : 9/29/2005 7:34:02 PM (GMT-6)

KKeen
New Member

Date Joined Sep 2005
Total Posts : 2

Posted 9/29/2005 7:05 PM (GMT -7)

Thank you. Yeah i am trying to get my mom involved. She is getting so depressed about all of this. I think the worst part is that nobody has any REAL answers or solutions. You just have to deal with it. I tried to tell her to make some sense of this and focus on positive energy. I just want to find someone holistic or medical that is willing to try something. Anything! At this point what could it hurt?
Sometimes, even if it's just a mind set, it helps. It gives you a purpose. At least you feel like your trying to accomplish something.

Thanks for the ears!

KKeen

Tension
Regular Member

Date Joined Aug 2004
Total Posts : 22

Posted 10/20/2005 9:22 AM (GMT -7)

I'm going to get mine herpes checked out once and for all now that u had success.

Can u tell me are these herpes active now?????

I think you other guys reading this should get checked out get ya mum checked.

CP
New Member

Date Joined Jan 2006
Total Posts : 1

Posted 1/5/2006 1:07 PM (GMT -7)

Hello,

My daughter has been ill with what i think is the epstein-barr virus.....going on now for 4 months. its reoccuring...again. i found this site to share with everyone:

we are also on a regimen of antiviral supplements.

hope this will be helpful to someone.

thanks, cp

*Please refer to forum rules before posting links* Rule #4

http://www.healingwell.com/community/default.aspx?f=46&m=106997

Post Edited By Moderator (Foreign) : 1/5/2006 7:08:38 PM (GMT-7)

sslaird
New Member

Date Joined Jan 2006
Total Posts : 6

Posted 3/3/2006 3:07 PM (GMT -7)

i too have read about valtrex for ebv. i take 1000 mg per day, because my cfs fevers seem to come from this. i also have high herpes-1 titers and this helps control this. neither are fully controlled, so i am going to ask my doc to up the dose. i understand up to 4 mg per day is ok

Grammie7
New Member

Date Joined Jun 2006
Total Posts : 2

Posted 6/10/2006 7:07 PM (GMT -7)

I've just been diagnoised with EBV. I'm looking for anyone who can help me learn to explain it correctly to my employer. The only thing they seem to understand is that it is mono. I've tried to explain that that's incorrect but I'm not getting anywhere. If anyone can help me on this topic I would greatly appreciate it. Thank you.

michellemu
New Member

Date Joined Jul 2006
Total Posts : 1

Posted 7/28/2006 11:56 PM (GMT -7)

I have been feeling very tired and dizzy with headaches for about a month now. I had some bloodwork done and my doctor sent me the results in the mail stating the my EBV titers were VERY high. So I called him today and he didnt seem to concerned about it. He said that my levels were 4000 and the average levels are around 100. If I dont feel better in 3-4 weeks to come back for further testing. This just doesnt sound right to me, any suggestions?

CaMama
Veteran Member

Date Joined Mar 2005
Total Posts : 1794

Posted 7/29/2006 2:07 AM (GMT -7)

get yourself to another doctor.

You probably have mono and need rest, etc. Often the severe symptoms of mono only last between 2-6 weeks - but you should know if that is what you have and they should make sure it hasn't/doesn't affect your liver. It can take many many months before you feel better completely.

good luck.

pollyandsay
New Member

Date Joined Jul 2006
Total Posts : 16

Posted 8/1/2006 7:06 PM (GMT -7)

I had ebv when I was 18. I was actually hospitalized for a week in ICU with a nurse at my side 24/7. My throat looked like there was a football stuck in it, and my liver and splene were protruding from my stomach. It was the most horrible thing I ever could have imagined. I would not wish it on my worst enemy.

I have never been the same. Lived every day of 14 years with chronic fatique. I had read those articles about CFS and ebv, and wondered if I had CFS, but last February I was diagnosed with Narcolepsy. I do not know if the Narcolepsy is a result of th ebv, but I cannot begin to tell you how nice it felt to know that I was not a hypoconriac! My mother was convinced it was all in my head and that I was just lazy.

CaMama
Veteran Member

Date Joined Mar 2005
Total Posts : 1794

Posted 8/1/2006 9:50 PM (GMT -7)

Wow, and I thought my experience in '03 was bad! I had Mono twice, once in 86 and the other in 03.....we can only assume that the first pass was thru cytomegalo virus and not ebv.

There is controversy out there that once you have EBV you don't get rid of it....good luck.**

Ronnie99
Regular Member

Date Joined Jun 2006
Total Posts : 122

Posted 8/2/2006 8:44 AM (GMT -7)

By the time a person is 40 years old over 95% of people have been in contact with EBV and are carriers for life. My understanding is that a person is only highly infectious though when they have a recent infection or if they have a resurgence of the virus. It is also possible as far as what I have read that people who first encounter EBV in middle age can get more sick than teenagers do. For older folks it sometimes becomes a chronic infection.

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