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Old 04-20-2009, 02:49 PM   #1
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Question Elligable for SS disability with EBV?

Since I've become older, my EBV seems to happen more frequently and lasts longer than it used to. Since I haven't been able to work since September, I'm thinking I may not be able to work in my field any more (12 hours a day, 6 days a week). Who's going to hire someone who's last job reports that "she called out sick all the time" or that you can't hold a job for more than a few months before taking off for weeks due to illness? Do we qualify for disability with EB?

Thanks,
B
.

 
Old 05-01-2009, 11:40 AM   #2
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Re: Elligable for SS disability with EBV?

i never heard of someone being disabled because of eb, who knows. i have it. (according to lab tests) but i have ms as well. maybe you have chronic fatigue syndrome. or something related. i wish you luck...
c

 
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Old 05-01-2009, 03:55 PM   #3
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Re: Elligable for SS disability with EBV?

Sickdaily,

out of curiosity, when you say you are "getting sick" with EBV, what do you mean by that? Also, when you are getting sick how do you know it's EBV as a cause of your symptoms and not something else?

 
Old 05-02-2009, 05:20 AM   #4
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Angry Re: Elligable for SS disability with EBV?

Quote:
Originally Posted by cgranulomatis View Post
Sickdaily,

out of curiosity, when you say you are "getting sick" with EBV, what do you mean by that? Also, when you are getting sick how do you know it's EBV as a cause of your symptoms and not something else?
I mean that I am having the symptoms which go along with EB, such as: head ache, sore throat, body aches, low grade fever, fatigue, all of which last 6 to 8 weeks with about a month or so in between that I feel good. I know it's EB because I've had enough blood work the last 10 years to rule everything else out except for EB. My blood work always comes back positive for EB when I'm symptomatic, so why would I think it's something else?? And why do people like you have to make things harder on people that suffer with EB by questioning the illness? It exists, it makes us miserable and if I could take a pill to cure it, I'd be the first in line. Do you have any idea how depressing it is to wake up day after day and feel like a truck hit you after you've only been awake for 2 or 3 hours? I live on tylenol to treat the symptoms, but that's all I can do.

 
Old 05-02-2009, 05:28 AM   #5
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Re: Elligable for SS disability with EBV?

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Originally Posted by gateway2007 View Post
i never heard of someone being disabled because of eb, who knows. i have it. (according to lab tests) but i have ms as well. maybe you have chronic fatigue syndrome. or something related. i wish you luck...
c
People with fibromyalgia or depression can, and do, receive benefits so why not EB patients?
I thought this forum would be more helpful and I would find other people that could relate to the disease. Instead, I feel like the replies I have received are rude and critical. I guess I'm done posting.

 
Old 05-02-2009, 06:07 AM   #6
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Re: Elligable for SS disability with EBV?

I don't question your symptoms--they are real. I question the cause of them. Just because an EBV test comes back positive, doesn't mean you have active EBV--that's not how the test works. "People like me" aren't questioning your illness, but just know the natural history of Epstein-Barr and how the scientific evidence overwhelmingly shows that there is no such thing as chronic active EBV. That said, I know it must be difficult for you to deal with your symptoms on a daily basis. What medications have you tried to help out? Have you tried tricyclics or exercise therapy? I ask because those are two treatments which have been shown to sometimes help in long term fatigue/malaise symptoms like yours.

 
Old 05-02-2009, 06:21 AM   #7
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Re: Elligable for SS disability with EBV?

Quote:
Originally Posted by Sickdaily View Post
People with fibromyalgia or depression can, and do, receive benefits so why not EB patients?
I thought this forum would be more helpful and I would find other people that could relate to the disease. Instead, I feel like the replies I have received are rude and critical. I guess I'm done posting.

i was not being rude or critical! however you need to find out maybe from another doc to investigate why you are having these health issues.
some people get ssdi easy while others do not. this is why you need to get a second opinion regarding these issues... so you can get ssdi to help.

take care,
c

Last edited by gateway2007; 05-02-2009 at 06:23 AM. Reason: removed link

 
Old 05-03-2009, 09:35 AM   #8
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Re: Elligable for SS disability with EBV?

Hi Sickdaily, soooo sorry you are going through this illness. It can be truely debilitating. I am going to P.M you with some information that hopefully helps a little.

It doesn't matter how many people in the world have Epstein Barr. What does matter is how it affects each and everyone of us individually. How it affects one person it may not affect the next one in the same way.
And weather it is active or not it can still be damaging...To much new information and help out there nowdays.
Keep looking for answers....

Sending you good energy and strength in fighting this battle.

Jodie

 
Old 11-16-2010, 04:19 PM   #9
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Re: Elligable for SS disability with EBV?

Quote:
Originally Posted by jojo View Post
Hi Sickdaily, soooo sorry you are going through this illness. It can be truely debilitating. I am going to P.M you with some information that hopefully helps a little.

It doesn't matter how many people in the world have Epstein Barr. What does matter is how it affects each and everyone of us individually. How it affects one person it may not affect the next one in the same way.
And weather it is active or not it can still be damaging...To much new information and help out there nowdays.
Keep looking for answers....

Sending you good energy and strength in fighting this battle.

Jodie

I have suffered from severe fatigue for over 6 months now. The last 4 months I have had to spend almost all my time in bed because I don't have the energy to get up. I have no appetite and if not for my husband I would have starved to death by now because I'm too tired to get up and make something to eat. He cooks and brings it to me and he knows that even though I have no appetite I will at least eat some rather than insult him by refusing to eat even though the thought of eatting makes me sick to my stomach if I'm not hungry. I have several medical issues and have been disabled since 2000 but the fatigue was new and sudden. I tested positive for Epstein-Barr and finally have an answer for why I am so fatigued. I get out of bed only to go to the doctor, bath room, or to shower. Even that leaves me very weak an tired. I also suffer from double vision and dizzy spells that get worse by the day and am waiting for a referal to a Neurologist. Back to Epstein-Barr. I have been told there is no treatment or cure for it. Anyone have any other information about a posible treatment or cure? The fatigue is supposed to last a few weeks. Why is mine continuous and still a problem over 6 months now? Will it ever go away and give me my life back? I had enough problems before this landed on top of them. I want my life and my independance back. I'm the one that takes care of everyone else and now they are taking care of me and it is not fair and I cannot accept that. I am discustingly independant and will never adjust to this way of living f this does not go away. I was told my test showed a recent infection exposure a couple of months ago. Can somebody tell me does it ever go away or are there some people who will have it always? I feel like I have had it forever. I've never been the type to lay in bed all day and I hate it. I want to cook dinner for my husband again because I so enjoyed it. Any information would be greatly appreciated. I am definitely not depressed. That has been ruled out by the doctors. It drives me crazy that every new doctor I see the first thing they want to do is put me on antidepressants. Been there, done that just to proove I was not depressed. There was a time in my life when I was and tried to kil myself. It was a very dark and lonely place that I never want to go to again. If I thought for a minute I was depressed I'd be running to the doctor for meds. I'd also be the first to know if I was. Good luck to my fellow sufferers.

Chrissy

 
Old 11-16-2010, 04:37 PM   #10
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Re: Elligable for SS disability with EBV?

Quote:
Originally Posted by Sickdaily View Post
I mean that I am having the symptoms which go along with EB, such as: head ache, sore throat, body aches, low grade fever, fatigue, all of which last 6 to 8 weeks with about a month or so in between that I feel good. I know it's EB because I've had enough blood work the last 10 years to rule everything else out except for EB. My blood work always comes back positive for EB when I'm symptomatic, so why would I think it's something else?? And why do people like you have to make things harder on people that suffer with EB by questioning the illness? It exists, it makes us miserable and if I could take a pill to cure it, I'd be the first in line. Do you have any idea how depressing it is to wake up day after day and feel like a truck hit you after you've only been awake for 2 or 3 hours? I live on tylenol to treat the symptoms, but that's all I can do.
I feel so bad for what you are going through. I too have active symptomatic EBV but I am luckier than you even though it has ruined my life and taken away everything I enjoy doing because of the fatigue. The reason I feel lucky is that I do not have all the symptoms that you and others have and I do have it. I tested positive to recent infection and have had the fatigue for over 6 months but I do not have the rest such as fever, headache, etc. I occasionally get headaches but they are from a problem in my neck and the pain is in the hollow part at the base of the back of my skull and you cannot touch any part of the area around it. I only occasionally get soar throats and never fevers because I am one of those people that does not run fevers no matter how sick I am. I've had bronchitis and the flu and no fever. As for body aches and feeling like a fleet of mac trucks ran over me, I've had that for a long time before this because of another medical disability that I've had since 2000. It has only been made slightly worse with the EBV. Since 2000 I have had6 surgeries. 5 of them because of my disability. I had surgery on both hands, both elbows, and one shoulder. I'm sorry you are suffering worse than me though mine is not pleassant either. I just have other health problems that cause all kinds of symptoms. I have been under the care of pain management since 2000 because of my original disability. This just is icing on the cake. I do pray and hope that things get better for you and having the same illness as well as a few others I can sympathize and understand what you are going through. I'd kill to be able to go back to work as I've never been the sit at home kind of person and have always been digustingly independant so to have my family have to take care of me is a hard pill for me to swallow and I will never get used to it and accept it. I've always done for myself and was the one that took care of everyone else. A recent MRI has also revealed a problem near the brain where the spinal fluid is stored and circulates that has caused severe double vision and dizzy spells that get worse by the day and I don't know how long I will be able to stay online. I am almost to the point that I cannot see well enough to be online. Good luc. I hope you feel better.

Chrissy

 
Old 11-16-2010, 05:04 PM   #11
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Re: Elligable for SS disability with EBV?

Quote:
Originally Posted by harka View Post
I don't question your symptoms--they are real. I question the cause of them. Just because an EBV test comes back positive, doesn't mean you have active EBV--that's not how the test works. "People like me" aren't questioning your illness, but just know the natural history of Epstein-Barr and how the scientific evidence overwhelmingly shows that there is no such thing as chronic active EBV. That said, I know it must be difficult for you to deal with your symptoms on a daily basis. What medications have you tried to help out? Have you tried tricyclics or exercise therapy? I ask because those are two treatments which have been shown to sometimes help in long term fatigue/malaise symptoms like yours.
first of all those meds you mentioned don't work for everyone. Second the test can tell if it is an old infection, if it is active, if it was a recent exposure, etc. My blood work came back as a recent exposure. The test can tell you positive and it can tell you active as mine did. As for there not being any such thing as chronic active EBV, there are casesthat can last many months and as long as a year active and to those that have it, it sure does feel like it is chronic active EBV. I've had it active for over 6 months, confirmed by tests and no sign of it getting better yet. The first 2 month I managed to keep going as it got worse. The fatigue got so bad that I have been bed ridden 95% of the time for the last 4 months and have lost more weight than makes my doctors happy and am now under weight because I have no appetite nor energy if I did to go make something to eat. I thank God for my loving husband who will cook dinner and bring it to me because he knows I will not insult him by not eatting at least some of it after he took the time to make it. That is how he gets me to eat something because otherwise I'd have starved to death. I get sick to my stomach at the thought of eatting when I'm not hungry and since I have no appetite I'd never eat if it weren't for him. He even brings my coffee when I wake up. I am blessed and despite the medical issues I have, I am the luckiest woman on the planet to have him as my husband. I always remind myself that their are others worse than me healthwise and are alone with no support system or family that cares if they live or die. That keeps me from feeling sorry for myself as I do on rare occassions. Normally I believe self pity is a waste of time nor do I want pity from anyone. All my health issues have proven one very important thing to me. I am deeply loved and lucky to be so. Please excuse any misspellings as my vision is bad because of a neurological problem that is yet untreated. I actually get straight A's and graduated college in 2007 with honors and a degree in computers. My current problems have caused my brain to not function properly. I was 2/3 through my second college degree in business when I had to drop out because of this new problem.

chrissy

 
Old 03-25-2011, 11:25 PM   #12
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Re: Elligable for SS disability with EBV?

Quote:
Originally Posted by Sickdaily View Post
I mean that I am having the symptoms which go along with EB, such as: head ache, sore throat, body aches, low grade fever, fatigue, all of which last 6 to 8 weeks with about a month or so in between that I feel good. I know it's EB because I've had enough blood work the last 10 years to rule everything else out except for EB. My blood work always comes back positive for EB when I'm symptomatic, so why would I think it's something else?? And why do people like you have to make things harder on people that suffer with EB by questioning the illness? It exists, it makes us miserable and if I could take a pill to cure it, I'd be the first in line. Do you have any idea how depressing it is to wake up day after day and feel like a truck hit you after you've only been awake for 2 or 3 hours? I live on tylenol to treat the symptoms, but that's all I can do.

 
Old 03-25-2011, 11:43 PM   #13
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Re: Elligable for SS disability with EBV?

believe me' I know how you feel. I have a 4 yr. old and she has so much energy. My relative can't understand why I'm so sleepy all the time. I've been called lazy and uncarring. They ask' how can you just fall asleep with your daughter running around the house. I usually get up between 11am to sometimes 1pm . I sit on the couch like a zombie for 2 or 3 hours drinking about 4 or 5 cups of coffee. By the time I actually get the energy to get dressed and out the door it's usually 5pm and certain businesses are closed. I
I do work 4 hrs. 3 times a week. I have just enough energy for that.
About 13 yrs. ago I was diagnosed with the EBV virus. I was told i would be tired and sick a lot and some days would be better than others. Since then no other Drs. have taken me seriously about my fatigue and yes I do have muscle aches too. The Psychiatrist just feels I need an antidepressant and Anxiety medication since this illness seems to come with depresssion and anxiety. I don;t have any days where I have a month, a few weeks; or even a day when I actually feel energetic. I also take sleeping pills to sleep since my body doesn't know when to go to sleep.
Your symptoms seem similar to mine. Hope to hear from you.
I just signed up and haven't found anyone to chat with or reply to.
thanks for listening.

 
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