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Topic: anyone else have epstein barr virus and clusters? (Read 658 times) |
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Annie_Markota
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anyone else have epstein barr virus and clusters?
« on: Sep 11th, 2002, 2:21am » |
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I've noticed in my last two cycles that two weeks before they start my EBV becomes active. I loose my voice, glands become enlarged and just feel terrible for the next 10 days then the first headache comes. Now I have about 2 weeks left of the cylcle Wooo Hooo!!!! ;D and I'm sneezing and coughing again. I was just curious if anyone else who might also have EBV ever have this happen. Like I said it has only been the last two cycles and I have been suffering with clusters since 1985 so I'm not sure what to think at this point. I appreciate anyone's input.
Thanks all
Annie
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Jabeen
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Re: anyone else have epstein barr virus and cluste
« Reply #1 on: Sep 11th, 2002, 9:46pm » |
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Hi! I don't have any experience with EBV-but I just wanted to say welcome to the site. It seems so many people have different types of cluster hell...as if it isn't bad enough to have the clusters. I hope someone else can offer some advice-
Jabeen 
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Annie_Markota
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Re: anyone else have epstein barr virus and cluste
« Reply #2 on: Sep 11th, 2002, 11:26pm » |
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Thanks I appreciate it. I was a member several years ago but, changed locations and computers so had to become a newbie again. take care 
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sailpappy
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Re: anyone else have epstein barr virus and cluste
« Reply #3 on: Sep 12th, 2002, 9:57am » |
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;D ;D Hello,
Welcome to the site and the Family that you have found- "Once Lost but Now have been Found" I would like to give you my input on EBV and Clusters.
Wheather there is any correlation between the two I have no Idea, you see I'am a Severe Chronic and have never had a remission until about a year ago when I was put on Oxy Contin. Not the Drug of Choice, however in my case it has been the miracle I've been waiting 33 years for. At 7 to 15 attacks a day, 365/24/7 I have been through every known treatment and a lot of experimental stuff too!
In 1998 I discovered that when I had contracted Hep B in 1970 I also picked up Hep C, they didn't have the diagnostics back then to detect this strain, at the same time I was told I had EBV and Citomegella Virus Active.
I was told by the epidemologist that we all carry a multitude of these Herpes Viruses in our systems and different things trigger them to go Active or Chronic.
I suffer from the classic symptoms of Chronic Fatigue Syndrome as well as the Hep C, but I guess it could be possible that what ever it is that triggers your episode to begin could be triggering the EBV too.
I guess there couldn't be a more diversly different condition existing together when you are sleep deprived because of the clusters and the best treatment for EBV is getting plenty of rest, a complete contradiction in symotanious conditions I would say.
I haven't really found anything that helps the fatigue except rest, and even that isn't enough these days, I go to sleep exhausted and I awake exhausted, but taking a sleeping aide the keeps me from going into REM sleep once a week or so helps some! If you can tolerate it Dramamine will help do this and also Restoril
which you will need a prescription to get does the same thing, it doesn't produce a hangover and I have taken up to 6 in one evening with no problems, This sleep aide is one that they prescribe to many Gereatric patients and is relitivly safe, I have heard that drinking a few cups of hot Camamil Tea at bed time will also help a great deal, in fact this is what my Grandson's peditrition recommended in lieu of giving him Codenine Cough Medication or attarax to help him sleep when he is in a chronic Aspthma stage.
I hoe this helps some how, we all carry Mono,Citomegella,EBV, and a host of other herpes viruses, it still isn't clear what triggers them to become active but we all have the possibility to come down with one at any time! good Luck Pappy
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Annie_Markota
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Re: anyone else have epstein barr virus and cluste
« Reply #4 on: Sep 12th, 2002, 10:06am » |
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 Oh my Goodness Thank you soooo much Pappy. I have tried some of those sleep aids along with a multitude of others as I'm sure you well know. The neurologists just give us "whatever" because they just aren't sure what to do. And I showed that I don't have any immunity to the CMV when I was pregnant. Another thing no cycle when you are pregnant. They can't explain that one either. Maybe I can hope for relief when I go through menopause! I wish you all the best and will continue to pray that some day they will figure this all out for us. take care
Annie
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TomM
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Re: anyone else have epstein barr virus and cluste
« Reply #5 on: Sep 12th, 2002, 11:28am » |
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"...no cycle when you are pregnant. " Dam! Almost makes me wish I could.
--TomM--
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Annie_Markota
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Re: anyone else have epstein barr virus and cluste
« Reply #6 on: Sep 12th, 2002, 11:41am » |
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believe me it has made me think of maybe having more! ;D
Annie
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ChristineL
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Re: anyone else have epstein barr virus and cluste
« Reply #7 on: Sep 12th, 2002, 4:25pm » |
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I was diagnosed with EBV approximately 5 years ago. I was in remission with my CH's for the past 12 and they have just returned this past July.
Interesting correlation if there is one.
Chris L
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Jabeen
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Re: anyone else have epstein barr virus and cluste
« Reply #8 on: Sep 13th, 2002, 9:03am » |
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Mine didn't show up until I was peri-menoapusal...connection? Who knows?
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Annie_Markota
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Re: anyone else have epstein barr virus and cluste
« Reply #9 on: Sep 13th, 2002, 12:24pm » |
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 Yours have stopped???? You mean there's hope? The last two days have been horrible. The pred. has me swollen and cranky and had 3 real bangers. I asked my neighbor to please drive me to pick my 9 year old up from school (I was at oh #7 on kip) and he laughed. Had to drive 10 miles each way that way. Then got mad and called 1 1/2 hours later when I didn't go pick his daughter up from practice. I wish sometimes they could feel it just one time. Thanks all for all of your input and support.
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