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Old 03-17-2009, 11:56 AM   #1
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Question Suggestions needed please...Epstein-Barr

Hello - My GP says that my lab tests reveal that I have "chronic" or "recurrent" mono (Epstein-Barr Virus) and that there is no treatment. I have been dealing with this diagnosis for several years but it seems to be getting worse (i.e., no amount of rest seems to make a difference any more). The only treatment plan I can find centers on self-management (i.e., control stress, get plenty of sleep). Are there any others out there struggling with similar problems? My efforts to "self manage" this don't seem to be working...especially in terms of improving energy and concentration levels. Fortunately, I have a job that is flexible, but the overwhelming mental and physical fatigue is making life very difficult. Are there vitamins I should consider taking? Any prescriptions I should ask my doctor about that have worked for you?? Recognizing the pharmaceutical limitations of treating viruses, I am especially appreciative of any natural remedies you can suggest. Thanks in advance for any insights/recommendations you can offer.

 
Old 04-09-2009, 01:23 PM   #2
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Re: Suggestions needed please...Epstein-Barr

Hi Brawndo78,

As your probably aware we dont seem to get feedback on ebv/mono. One board member did post advice, and suggested anti-virals as treatment. Living in the UK I haven't been aware of our doctors prescribing these as treatment. The general consensus among them is let it take it's course.

Having done a bit of research and reading threads, i can't wait a long time to get my life back on track. I have been affected with this mono infection for around 6 months. I am a 52 yr. old female in good health until this came along. I wonderd if there was any natural anti-viral medications? Lo-and-behold i received an email back from a homeopathic doctor. The medication is called sambucol - black elderberry extract. I self-medicated myself on the winter dosage for a week. Along with high strentgh echinacea drops as advised, after one week, i feel a significent improvement in my situation. My lymph glands have not ached for the first time in months. I have been active for two days on the go. Very tired at bedtime, but hey-ho, i can deal with that. I want to drink more water. The upside is i'm not as hungry. I did have a few days were i had extremely bad diahorrea. This (iv'e been told is the virus dying off and leaving my system). I shall carry on taking the extract for a couple of weeks.

Maybe this may help you. Take care.

xo sandra

Last edited by mentalmum08; 04-09-2009 at 01:25 PM. Reason: spelling corrections

 
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Old 04-09-2009, 09:15 PM   #3
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Re: Suggestions needed please...Epstein-Barr

Many thanks to you for the input!!

 
Old 04-12-2009, 05:45 PM   #4
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Re: Suggestions needed please...Epstein-Barr

EBV remains dormant in your body forever but it will not always be active, likely for the majority of the time, this virus is inactive. It can not be removed from your body and if a doctor is feeding you that bull, maybe you need to find you a different doctor.

 
Old 04-24-2009, 01:43 AM   #5
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Re: Suggestions needed please...Epstein-Barr

Yeah, i agree now in retrospect
I have since had another major relapse. I really dont understand this situation, and am still on a learning curve. thanks for pointing this out.

sandra xoxo

Last edited by mentalmum08; 04-24-2009 at 01:44 AM. Reason: my c is stuck

 
Old 04-24-2009, 07:34 AM   #6
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Re: Suggestions needed please...Epstein-Barr

Hi everyone,

I am 21 years old, and I too suffer from Chronic Active Epstein Barr Virus. I am VERY happy to say that I've been feeling pretty well for about a week now. Gotta be thankful for these times when they come around!!!

I've done quite a bit of research on this virus and just recently had an appointment with an infectious disease specialist a few weeks ago. Although I had been told by my family doctor that there is no cure and I read many things saying the same on the internet, I had to hear it from a specialist. He did not seem worried about it at all... and he said that there is truly no known cure right now. Like everyone else, he suggested I accept it and learn to listen to my body and give it what it needs. This is really the best advice we can get, guys. It's hard because we've always had an answer for everything and a solution to every problem, but until someone finds a cure or effective treatment, we've just gotta hang in there. We don't get to come back and live this part of our life again once we're better, so just try to appreciate those days when you do feel good. On the days that you don't, SLEEP if you're tired, EAT healthy food, READ encouraging books, JOURNAL... do whatever your body and mind need to do and don't focus on the fact that you CAN'T do what your responsibilities need from you. I'm not advocating laziness or self-pity... tried them both, they suck! I'm just saying to allow yourself to accept what is going on in your body and not fight it more than it is already fighting you. It's kind of like pushing against a wall. It's pointless and you're exhausted, frustrated, and ****** after it doesn't move.

Anyways...
It obviously bothered me that he didn't act like it was a big deal although I've been dealing with all of the symptoms intermittently (and unpredictably!) for the past two years. But I guess, in retrospect there's no point in getting all worked up about how frustrating our symptoms are, because those who don't deal with it don't understand where we're coming from. Speaking of that... I recently found a website for people who suffered from "Invisible Chronic Illnesses"--(MS, Fibromyalgia, Chronic Fatigue, Chronic Active Epstein Barr, Lupus)... anyway, the website has poems/letters/informative statements written by the members about their illnesses. I copied and pasted several of them into a word doc, edited parts of the information to my specific symptoms and feelings, and sent the letter to my family. The response was amazing. I'll post the letter in case anyone wants to use it/edit it to send to your family as well:

To My Family and Friends,
Please take a few minutes to read this letter. I have taken many of my minutes to do things for you, so I would appreciate your willingness to learn a little bit about what I am going through and the way it makes me feel.

Most twenty-one year olds start the day with unlimited amount of possibilities and energy to do whatever they desire. For the most part, they do not need to worry about the possible debilitating effects of their actions.

I do.

The hardest thing I’ve ever had to learn is that I have to slow down and not do everything I want to do. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.

My fatigue - I am not merely tired. I am often severely exhausted. I may want to participate in physical activities, but I probably can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability yesterday.

My forgetfulness - I may not remember what I promised to do for you, even though you told me just seconds ago. I may not remember to call you back—but I am not ignoring your phone calls. My problem has nothing to do with my age but in my opinion, it's related to the fact that my sleep is incredibly UNrefreshing. I do not have a selective memory. On some days, I just don't have any short-term memory at all. Trust me, this is something I wish would go away. It is killing me when I’m trying to memorize information for tests in school.

My intolerance - I can't stand heat. Or humidity. Sometimes I sweat...profusely. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. Sometimes I am freezing when others are perfectly comfortable. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. I can’t help it.

My depression - Yes, there are days when I would rather stay in bed or in the house. Severe, unrelenting exhaustion can cause depression, especially at this exciting and active time of my life. Your sincere concern and understanding can pull me back from the brink of sadness. Your snide remarks can tip me over the edge.

My good days - If you see me smiling and functioning normally, don't doubt my previous confessions of exhaustion. I suffer from a chronic post-viral fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going. So don’t say, “Oh, so you’re all of a sudden doing better today? I knew you’d get over it. I told you it was just all in your head”. Trust me, this doesn’t help. If you love me like you say you do, keep your opinions to yourself if you feel like you must doubt my sincerity.

And there are those who say "think positive and you will feel better" or my all-time favorite "get tough, exercise to build strength"… although if you’d take the time to learn about what I’m suffering from, you’d know that exercise only has debilitating effects on someone who is already grasping for any ounce of energy left in them.

Please don't get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to cry....

You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, whose attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike, you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my frustration about the way I feel is just as real and just as debilitating. And in some ways my illness may be more destructive because people can't “see” it and do not understand....

I have been accused of "playing games" for another's sympathy.

I have been told it is all in my head.

The hurt I experience at those words scars me so deeply I feel I have let my family down again; and still they don't understand.

I have been called unreliable because I am forced to cancel plans I made at the last minute because I’m so exhausted that I can’t even stay awake through the rest of my classes for the day. Trust me, I’m not blowing you off to do something else that I’d rather do that day. I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm. I feel like a helpless child at times...

I wish I could do more or know in advance what I will be capable of each day. I hate that you think I'm lazy or trying to dodge responsibilities. That's not it. Sometimes I just can't and other times I know it would be a mistake to use up all my energy on a minor thing and then have to give up something more important.


Sleep, when I do get some, is restless and I wake several times a night drenched in sweat and insatiably thirsty. I sit through many of my classes in a daze with indescribable brain fog ridiculing me as I stumble and grasp for clarity.

At times my feelings are irrational. My moods are erratic, and I get angry for no apparent reason, or way out of proportion to the trigger. This is just part of dealing with the stress, and I promise I'll try to keep it under control. I don't mean to direct the anger and frustration at you but I will sometimes fail.

Sometimes I need to talk about these irrational feelings. Just listen, okay? Please don't tell me how to feel or how not to feel. You can't fix my feelings. Please don't judge them: just accept and acknowledge them. When you say such things as, "Your illness must be terribly frustrating for you," I feel understood and comforted. But don't tell me that you know how I feel, unless you also deal with a chronic illness.

As I try to maintain my dignity as much as possible, please do me the small favor of trying to understand and learn about what I am going through.

On a brighter side I want you to know that I am still me. I am still the girl who loves to give, loves to smile, loves to make you proud… I am still that girl. I still have a sense of humor, and if you take the time to spend with me you will see that. I love to fix things for people to know that I made their problems go away. I am fun to be with if you will spend the time with me when I’m feeling well enough to do so; is this too much to ask?

I love you and want nothing more than to be a part of your life. And I have found that I can be a strong daughter/friend/sister/granddaughter/student in many ways. I can be your confidant, your friend, your support, your teacher-- and many times I will be the one to do the research and find the answer for your problem; many times I will be your biggest fan and the world will know how proud I am of you and how honored I am to have you in my life.

So you see, you and I are not that much different. I too have hopes, dreams, and goals for my life, but I also have to battle this demon called a chronic illness every day. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? If you have, I was there for you, wasn’t I? If you have to fight something like this in the future, I will be by your side, win or lose, I promise you that; I will be there in every way that I can. I will give all I can, I promise you that. So please, do the same for me.

I have to handle this thing my own way. I’ve the best I can thus far. Please understand that I am in a battle, and I know that there is little reality of a cure or effective treatment, at least right now.

I want to be assured that I can trust you and that you will be available to listen and try to understand. And I'll try to understand that you can't always be available.

I am not giving up. I am hopeful. I have complete faith that I will somehow recover from this, and once again live my life to the fullest. But in the meantime, I need your encouragement, love, and understanding.


-----------------------------------------------------
So their response was incredibly supportive and understanding. I can't thank the people who wrote those words enough!!!
-----------------------------------------------------

A few things that I found really encouraging:

http://www * deleted *
(Clip from Oprah featuring Kris Carr, an incredibly inspiring woman who beat cancer. Although her case is different from ours, its' still encouraging to watch someone who was sick and decided to live her life regardless).

* edit: deleted *

http://www.* deleted *
(Lecture by Randy Pausch--I'm sure most of you have seen it, but just in case anyone hasn't, it's amazing)!

And finally...
This is the story of Laura Hillenbrand, author of the book Seabiscuit. She also deals with CAEBV, and her story details the low times of her illness in a beautifully written way.

Hope all of this helps some of you out!!! I'd be happy to share more if needed!

Maggie

* Edit: Please don't post links and instructions regarding Internet websites as per Posting Policy, but do continue to enjoy using Healthboards, and sharing and discussing your information and experiences with others. Thanks. Take care. hb-mod

Last edited by hb-mod; 04-24-2009 at 09:27 AM. Reason: Please don't post links and instructions regarding Internet websites as per Posting Policy. Thanks.

 
Old 04-24-2009, 11:59 AM   #7
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Re: Suggestions needed please...Epstein-Barr

Hi athom 62,
Thanks for your post. I found the whole thing positive. You seemed to give advice that was totally in perspective. You are indeed wiser than your years. I am going to let my husband read the beginning of your post, because he mocks me (not unkindly) because he cant understand how this has afflicted his wife. Who used to run his house and family with such efficiency. It seems like the shoe is on the other foot now because up until now i adopted a similar attitude. Love and respect.
sandra xoxo

 
Old 04-25-2009, 10:46 AM   #8
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Re: Suggestions needed please...Epstein-Barr

Could someone please explain to me what this is:
Chronic Active Epstein Barr

I thought these type of virus's remained inactive/dormant in your body for most of the time.

How are you tested to see if there is a chronic activation of this virus? I know there is a test that can tell you whether you have the virus or not but what test verifies the activation?

Thanks.

 
Old 04-25-2009, 10:57 AM   #9
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Re: Suggestions needed please...Epstein-Barr

I had glandular fever when i was 16 now i am 35 and i have struggled with fatigue on and off ever since then. 6 year s ago i had anaemia with my 3rd child and ever since i have had problems with low iron levels and immune system and i wondered if it was anything to do with having the virus earlier in life? I also have a pea sized lump in the side of my neck that i have had for years i thought may or may not be related

athom62 i love your post i am sorry to hear you are feeling so low at this time in your life but i can identify with every word you said especially in the letter.

The thing is at 18 both my parents were diagnosed with terminal illnesses so i just thought i was always low because of that and it seems to have lasted forever.

When i had glandular fever at 16 (which was diagnosed with a blood test) i remember being in bed for weeks and weeks with swollen glands high temp, sore abdomen etc etc.

 
Old 04-25-2009, 11:53 AM   #10
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Re: Suggestions needed please...Epstein-Barr

neveragain444,
Are you a medical expert on this? Maybe it would explain the cut-and-thrust of your comments! I'm no expert. Until recently I was a lab. technician for the HPA, UK equivalent for your CDC in atlanta. I was totally in ignorance of this ebv stuff. But I do know one thing. The viruses are mutating and changing from their usual MO. Just take a look at the media hype on this swine flu spreading from Mexico! Maybe this is what is going on? We dont know. But we all try to be posiive and upbeat trying to support each other.
thanks

Last edited by mentalmum08; 04-25-2009 at 11:55 AM. Reason: didn't end reply politely

 
Old 04-26-2009, 12:11 PM   #11
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Re: Suggestions needed please...Epstein-Barr

No, I am not an expert. I actually have Epstein bar virus myself along with disabling fatigue and would love to know how you get tested for chronic activation of this disorder. This is new to me, I was not aware that this could happen. I would like to rule it out as a problem, that's all.

 
Old 04-26-2009, 01:28 PM   #12
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Re: Suggestions needed please...Epstein-Barr

Hi neveragain444,
Sorry to hear that you are affected by this! Look forward to you in-put in future posts. Take care
sandra xoxo

 
Old 04-26-2009, 05:26 PM   #13
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Re: Suggestions needed please...Epstein-Barr

I found this site online that says you can be tested to see if the virus is chronic or not through the antibioties testing they use to see if you have the virus or not. I haven't had this checked since I was first diagnosed with it, probably 10 years ago. I have no idea what the status of the virus was. I didn't know either that it had anything to do with your lymph nodes swelling. My lymph nodes hurt off/on all the time. I always wondered why. Can it wack with your white blood cells? I have had quite a low white blood cell count sometimes & no idea why. I really don't think the EBV is making me this sick. I know people who have different types of STD's and they are not at all sick like this. And I guess whether you feel bad or not would be depending upon whether the infection is active or not. It's definetly something that I am going to ask my doctor to recheck if getting some of my teeth pulled doesn't bring back some of my energy. I'm a little worried it may be related to dental problems. There is a $299.99 product online that says it can get rid of this virus out of your body. I have trouble believing that is possible. But who am I to say it isn't.

 
Old 04-27-2009, 01:22 AM   #14
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Re: Suggestions needed please...Epstein-Barr

Hello again neveragain444,
I too have just finished dental treatment. My doctor suggested no underlying dental problems to rule those out. My blood test results were explained to me. My white-cell level didn't raise alarms. The only thing that could be detected by the virologist was a raised level of this ebv. She's just tested me this week for toxoplasma?? I've had another relapse since. Some posters to this board have suggested Lyme disease. What I wont do is tell my doctor this. It was in the sunday times yesterday that there is a rise of what medical staff are calling "cyberchondriacs" Wouldn't want to be pigeon-holed. Keep us posted as to how you get on please.

sandra xoxo

Last edited by mentalmum08; 04-27-2009 at 01:23 AM. Reason: error

 
Old 05-15-2009, 07:18 AM   #15
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Re: Suggestions needed please...Epstein-Barr

Hi, I was diagnosed with EBV 9 months ago. Since then I have had every test to rule out any other possibillities. The fatigue is SO BAD that I've actually hoped for positive results on some of my other tests just becuase i knew it was something surgery may be able to correct.

This is literally ruining my life and I just don't know what to do. I've been to every specialist that would see me and they haven't been able to do anything for me. I've already lost two jobs because of it and I'm so worried about the one I have now. If anyone can help, I'd be sooo greatful!

I have tried Caffeine pills, Provigil, B12 injections, and excesive doses of vitamin C, all of which don't help at all. I took the Provigil this morning (only the 2nd day i've had it) and I'm having a world of difficulty even typing this email...and I am normally a very well spoken/written person.

It seems as though there has to be something out there that would help people deal with this better and send it into remission. But, reading the stories of people dealing with this for years and years is a very scary thing for me. I've even contemplated suicide a few times becuase my quality of life is so poor. I want to have kids, but I couldn't even raise one the way i feel now.

Thanks for letting me vent and sorry this is so broken, I just can't concentrate right now at all. Things are so foggy.

 
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