epstein barr virus

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sally Harris
New Member


Date Joined Sep 2010
Total Posts : 5
   Posted 9/2/2010 1:05 PM (GMT -7)   
Hi guys! Im new to all this BUT i  need some help and some questions answered. I know this group is for chronic fatique syndrome  HOWEVER I been diagnosed with the epstein barr virus also known as chronic fatique syndrone however I been told lately its not the same thing SO anyway before I begin will u guys be able to help me with questions regarding the chronic epstein virus questions?? Im really confused with this virus and need some info and questions answered I really hope u guys can help me Ill explain more n detail later if u guys can relate the the epstein barr virus thanks for response b4 hand

OneWearyChick
Regular Member


Date Joined Jan 2010
Total Posts : 109
   Posted 9/2/2010 2:52 PM (GMT -7)   
Hi Sally
 
I maybe able to help you with questions you have regarding ebv - just ask 'em. You were told right, ebv and cfs are not the same. However, the ebv community does believe that ebv can cause or be causative of cfs (I'm not clear on cfs's community's position, so I'm speaking from what I do know of ebv)

sally Harris
New Member


Date Joined Sep 2010
Total Posts : 5
   Posted 9/2/2010 3:41 PM (GMT -7)   
Hello ! Thank u so much for the response to my question. I have many questions about EBV actually mainly because I also have OCD (obsessive compulsive disorder) which means I obsess over things a great deal. OK well hers the situation I have been feeling very weak and tired and fatiqued for many years now I continually went to the dr many times and was always told I was fine BUT after I went for a recent visit complaining of the same thing was when my dr suggested I be tested for the EBV virus.. While i didnt think much of it I went ahead and let the dr do the blood work and it came back positive for the virus... After the dr called and informed me he assured me everything was fine and was no big deal and that I would just remain fatiqued and weak for the rest of my life due to this viruse and there was no treatment. He really didnt act concerned or told me anything about the virus really just that it caused chronic fatique and maybe just have to take some vitamins to get some energy it seemed like no big deal. However since i have ocd i started obsessing over this virus and I did research on the internet about it I waas shocked and suprised and stunned to learn that this virus comes from the herpes simplex viruses and that it can cause many bad cancers and illness such as MS.. My questions r as such How can I have ebv I f I dont have herpes I mean I occasionaly have cold sores but not breakouts? How did I catch this virus? Do I have a herpes simplex virus without knowing ot or ever having a std?? I mean herpes etc is a std right?? So how did i get the virus?? Another thing that worries me is the way it is spread.. They say its spread by salavia.. OK well ifs that is true does that mean I put my husband at risk for developing this virus as well every time I kiss him?? Can he get this virus through relations with me?? Also they say this virus is the main cause from alot of cancers etc So does that put me at a higher risk?? Im so sorry I have so many questions BUT its just my OCD is way out of control and I feel as though I haven been given the proper information on this disease. I feel very hurt and saddened that I have this terrible virus that has to do with the herpes simplex viruse that without my knowledge I have never been exposed to So is it possible to have that virus without having herpes? Im just so confused with it all. I just feel like I have to worry about transmitting this virus to my husband just by kissing him.. I know all this is soundinmg weird BUT I just feel like I got a disease and I didnt even do anything wrong such as being permiscious or anything and now I have to worry about having relations or MAINLY kissing my own husband over the fear of him becoming infected.. Also u cant die from that virus right?? Sorry for all the questions just so scared and panicky and feel so weird and confused about this whole thing.. Hope u can help me AGAIN sorry for the whinny and persistant and probably aggravating questions I just need to know all this stuff so i can hopefully get some relief and stop feeling like I ve done something wrong to be a victim of the virus Thank u so much Hope to hear from u soon!

OneWearyChick
Regular Member


Date Joined Jan 2010
Total Posts : 109
   Posted 9/2/2010 5:49 PM (GMT -7)   
First off, there are many herpes classes, just because you have ebv does NOT mean you have been promiscious. Your husband may or may not get it from you - maybe you got it from him (?) There are some things we may never know. So don't waste your energy on worrying about them. The herpes virus (genital) you are stressing over is not the epstein barr culprit.
 
Some people have a different gene, immunity tolerance, all sorts of variables that could make one have chronic ebv. There are many many theories. Most often people will get a virus and once it runs it course, it goes dormant and thats it,  they have an immunity to it so as not to ever have it again; but with some, like you possibly, there is a factor that has allowed the virus to come out of remission so to speak - this happens, no one really knows the whys although there are alot of theories.
 
There are treatments for ebv; most often a doctor who acknowleges  a patient with epstein barr will prescribe an antiviral treatment. There are ebv support groups, forums like this that are full of information and support. 
 
And just a tidbit I've learned, coincidentally many, probably the majority of people I have communicated with over the past three + years are somewhat OCD and/or type A personality. Interesting, isn't it?
 
try not to stress yourself more, sit back take a breath

sally Harris
New Member


Date Joined Sep 2010
Total Posts : 5
   Posted 9/2/2010 6:47 PM (GMT -7)   
Thank u so much for all your help info and encouragement! I do feel much better My OCD just got blown out of whack! I really appreciat u understanding and being patient with me! Thanks again!

cbarrett56
New Member


Date Joined Sep 2010
Total Posts : 9
   Posted 9/3/2010 5:13 AM (GMT -7)   
This is a theory that is put forth by alternative MDs: lots of people have EBV, and the other viruses. We all have antibodies to them. Some people are affected and most are not. The reason why some have symptoms is becuase the immune system is not functioning correctly. this can be for lots of reasons.

I have been taking low dose naltrexone with great results for immune modulation/boosting. It is very cheap and widely available- prescription only-

google this and find a doctor that will prescribe it for you. start at a low dose and gradually work up. This is my recommendation. It is helping alot of people with immune disorders.

OneWearyChick
Regular Member


Date Joined Jan 2010
Total Posts : 109
   Posted 9/3/2010 6:08 AM (GMT -7)   
Sally, your welcome. I hope you feel more at ease about ebv.
 
cbarrett56- LDN is GREAT for alot of people and for many different ailments. However, there are a large group of people who do not respond well to it at all for whatever reason (personally I think for some it is the gluten factor;( Some) LDN contains gluten which is typically not tolerated by most people with immune issues - sort of a co-inky dink, huh?)
 
Yes, lots of people, over 90% of the population, have ebv and/or other virus' in our bodies - dormant. It is when they reactivate that is an issue for ebv sufferers. There is no one reason what one thing can specifically reactivate the virus', it can be due to a multitude of reasons, a compromised immune system is only part of it; although it is obviously a big factor.

sally Harris
New Member


Date Joined Sep 2010
Total Posts : 5
   Posted 9/3/2010 8:54 AM (GMT -7)   
Thanks again guys for all your help. My biggest concern and worry over the virus is how its spread? I know its through salavia BUT Im so terriffed to kiss my husband anymore afraid he will become infected and I still cant wrap my head aound the fact that if a person has never been exposed to the herpes simplex virus can actually have the ebv? I thought u had to be exposed to the herpes virus through intercourse in which Im quite sure I have not no sign of it at all HOWEVER how did such a virus get n2 my body? The whole thing is complicted to understand I guess Ill never know.. My main symptons is just Im always severly tired and weak and fatiqued Im so weak right now that I can barely type this out.. Like I mentioned before I been diagnosed with OCD (obsessive compulsive disorder) in which I have to worry and over analyze things to where it becomes a obsession like for instance Im thinking this is somewhat like AIDS because it cannot be cured and theres no sense of ever getting better from this illness and when I hear the blood test for antibodies weelll that makes my mind wander even more I know its all silly BUT my ocd makes me think this stuff So just for reassurance this is nothing like aids and this is NOT a death sentence right?? I mean it isnt going to kill me right?? OCD sufferers just need alot of reasurance because of all the obessive thoughts we have I really appreciate your kindness and understanding with answering my questions to all thi stuff HOWEVER I just have 1 more question lol I promise then Ill be done .. LOL I was just recalling that my niece had mono 2 times 3 yrs ago.. Does that mean she has the EBV virus as well?? I know EBV causes mono BUT isntrr that the same thing so if shes had momo at least twice she probbaly most likely is a carrier of the virus as well right?? Im also seeing alot of evidence where they say EBV is the major cause Of MS actually i seen somewwhere where 100% of patients who suffer from MS have the EBV virus... geez just another thing on my list to worry about!!!! Hope to hear from u guys soon and hopefully u can answer my other questions and reassure me of some things and then hopefully i can put this obsession behind me.. I really need peace about all this... Thansk sweet people!

OneWearyChick
Regular Member


Date Joined Jan 2010
Total Posts : 109
   Posted 9/3/2010 9:22 AM (GMT -7)   
Sally,
 
you are confusing the different herpes virus'. The herpes ebv/mono virus is not the same herpes virus as the one that affects the genitals. It has nothing to do with "genital" herpes. There are several herpes virus.
 
There are many chronic ebv people who have spouses or partners that never become active - so, if you have been ill for some time and your husband has not shown any symptoms and you have "been together", kissed, whatever, I would surmise he is one of the fortunate that isn't effected like you or other cebv sufferers are. The EBV or mono virus is not spread just by kissing. One can get it anywhere - droplets in the air, shopping cart in a store, handle on a door, the list is nonending.
 
You could have been "activated" or "reactivated" from your niece. (how are you two blood related? I ask because I am guessing a genetic factor there makes you both more susceptible) I was reactivated by my nephew after being in "remission" when he visited while supposedly "unknowingly had chicken pox"
 
As for the MS connection, I have read there is speculation of one, but my question for that would be, why isn't it being treated (the ebv) if that is the case?
 
I would suggest the best way to handle your OCD obsession with this is to try and put it in a "good" perspective. Research different sources and think logically (as possible) about all that you read. Don't take any one source as "end all - be all" That should apply to any illness.  Too often people read from a few sources or all like minded and end up with doom and gloom, rather than considering all the real options.

sally Harris
New Member


Date Joined Sep 2010
Total Posts : 5
   Posted 9/3/2010 11:45 AM (GMT -7)   
The blood relation with my niece is my sisters daughter and YES she stayed with me and my daughter alot SO probbaly thats how I caught it. I been going to counseling and therapy for my OCd (obsessions) for awhile BUt I still struggle daily with the excessive thoughts just recently this new obsession (ebv) I know its hard o understand OCd unless u actually have it but a person nneds reassurance on things that I need so badly and Im not seeming to get it.. My thoughts r still Is this a death sentence>. Am I going to die from this illness? I just feel so scared with fear and obsessive thoughts about this and I cant get anyone to give me a exact answer to this question.. Can U? I really need assurance Im going crazy n my head right now... But thanks again for all your help and info and kindness. Alot of people r quite rude to people who suffer from OCD because they do not fully understand the affect of the illnmess and the symptons it causes the patient HOWEVER I take it u do understand and r caring So again I thank u and appreciate you BUT again just to calm down a bit Can u reasure me of those things I mentioned above?? This is not a deadly virus right?? This is not a death sentence right?? Thanks again so much! God bless u!

OneWearyChick
Regular Member


Date Joined Jan 2010
Total Posts : 109
   Posted 9/3/2010 1:15 PM (GMT -7)   
Sally
 
Please try not to worry yourself about ebv so much. I do understand your issues with OCD and want you to know, ebv  is not a death sentence. You will be fine.
 
Have you ever had your adrenals or other hormone levels such as thyroid and/or sex hormones checked ? Sometimes low (or even high) - unbalanced hormones can contribute to OCD. Just a thought -

cbarrett56
New Member


Date Joined Sep 2010
Total Posts : 9
   Posted 9/3/2010 6:25 PM (GMT -7)   
To WearyChick: LDN can be compounded with fillers that may have gluten in them, but you can get LDN that is compounded without gluten as a filler. You are correct in that not everyone with EBV or a viral load is helped by LDN. My way of thinking is that, the only way to know if you are or are not one of those people is to try it.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1295
   Posted 9/6/2010 9:05 AM (GMT -7)   
Sally, I have posted on another thread -- which I am going to read now, btw -- about chronic EBV.  I have chronic Lyme disease (and Babesia -- a protozoa carried by ticks).  I had believed that Lyme attacked my immune system and that is how my viruses reactivated -- I also have HHV6= Human Herpes Virus 6, another virus not related to cold sores or an STD.
 
I am also concerned about the possible cancer cause in HHV6.
 
Now, thru a lot of research, I have learned it is impossible to figure out what caused what: Did Lyme kick my immune system and cause these viruses to reactivate, or did I fall suseptible to Lyme because my immune system was already compromised by these viruses?
 
In my case, I really believe it is from the Lyme, as my tick bite was the beginning of all my symptoms.  My Dr is currently treating the Lyme w/ heavy doses of Augmentin.
 
I am also scared about all that can happen because of these viruses and my Lyme Dr, who is an infectious disease DR specializing in CFS, MS, AIDS, and Lyme was not immediately concerned about the viruses.  He has published papers on his research of HHV6. I could not understand it, because it was a medical paper, but Lyme, MS, and CFS were all mixed in there, altho I could not understand the relationships he was noting.
 
I am hoping upon hope that he believes kicking the Lyme will help my body kick the viruses.  At this time, my depression and fatigue are nearly unbearable, so let's hope so. But I am very scared that I now have CFS and will never get well.  I contracted Lyme over 3 yrs ago.
 
To others of you here w/ CFS. Maybe this has happened here before, so maybe you already know this, but a lot of folks on the Lyme board believe that all these diseases (CFS, MS, Alz, amongst others) are caused by Lyme disease.  Some even believe all of these ARE Lyme disease. 
 
I do not know about this, and I am not here to say this, but from what I do know, getting some testing for Lyme disease should be included in all diagnostic tests.  Unfortunately, Lyme tests are pretty inaccurate, however, there are no false positives except in the Elisa which is only about 30% accurate. 
 
But if anyone here suspects this could be possible, there's a lot of info on the Lyme board.
 
I am certainly not here to preach about Lyme -- I came here w/ questions about EBV
 
To those w/ OCD -- I don't think I have this, altho on and off I do latch onto a subject and obsess a little while. But I no longer have the energy to do all the cleaning and chores that I used to do. I live w/ dogs and have given up having a clean bed and clean house -- I just can't do it, plus work.
 
Anyone else's experiences?
 
Sally, (and everyone else), I am sorry about the reasons you find yourself here.  I hope you find all of your answers!
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