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Epstein Barr Virus (EBV) Message Board
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Old 03-07-2005, 04:30 PM   #16
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mranxiety HB User
Re: Epstein Barr Virus - ???

GG:

I had more test done last week:

Gastro doctor tested me for Sjogrens Syndrome (Three different test - ANA / B 27 or something genetic test / and other antibody tests) all negative.

Endocrinologist: Tested my Zinc levels. Why? Who knows? Nothing wrong.

So let's see how many doctors do I have working on my case:

Infectious Disease Doctors: 1
Gastro Intestinal Doctors: 2
Internal Medicine: 1
Endocrinologist: 1
Shrink / Stress Doctor: 1

That's my current team. I've gone through at least a dozen others. No help. No answers.

My mouth is so dry. I get up in the middle of the night and have to brush my teeth. That's how dry my mouth is.

Now I'm thinking is this a candida infection? I've been reading alot about candida infections? Have you explored this yet? Many doctors do not recognize this infection. I had H. Pylori over the summer (7/04). That's when every thing went bad. Could it have been cause by an overgrowth of yeast in my intestines? My wife also had H. Pylori two months ealier.

I was on LOTS of antibiotics July through November because I thought I might have a STD. Despite negative testing, I overloaded w/ all sorts of very strong antibiotics oral and injectable (that's to my doctor friend). Now, I'm begining to feel very bloated and need to eat to relieve my ab pain. I put on 20 lbs over the past three months. I was very active up until this summer. Bodybuilding, boxing, etc. Now I'm useless. I can barely make it to work and then home where I eat ...and then sleep.

Would a full body CT Scan of my head and chest offer any help? I'm going to the docs again on Wednesday to see my IM/GI doc. I will ask him about testing me for Candida Albicans.....I also read about Leaky Gut syndrome.

Life is not good right now. Constant pain...no drive (physical / sexual)...nada.

I pray I find out what's wrong. This is nutz.

Thanks,


 
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Old 03-23-2005, 10:40 PM   #17
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Re: Epstein Barr Virus - ???

My daughter is going through the same thing as many of you here. I have been taking her to doctors and hospitals and specialists and no one could find anything wrong. Her counselor was using words like somataform and doctors were saying we can't find anything...is there any reason why you wouldn't want to be in school.
No one would listen...I kept saying I know something is wrong with my daughter but no one would listen. Finally her doctor tests her for epstein barr and for the first time a test came back positive. The thing is I am confused a little bit. When you try to read about epstein barr you get more info on mono than EBV. My daughter was tested for mono and did not have mono but when she was tested for epstein barr that came back positive. the doctor said that EBV is like 10 times worse than Mono. Can you have mono without having EBV? I see you can have EBV without having Mono...what is the difference between the two? how long are you contagous?
What can I do to make my daughter feel better?
She throws up all the time, runs a low grade fever, developes rashes, and complains of pain in her mid to lower back that goes around her sides to the front. she has a difficult time urinating and often there is blood in her urine. The main thing is the pain. she can't make it through a day of school because she hurts and all her doctor wants to give her is naproxen, which does nothing for her!
help
I am drowning in this sea of illness!

 
Old 03-23-2005, 10:49 PM   #18
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Re: Epstein Barr Virus - ???

if it helps....my daughter has epstein barr virus and we have gone through the "what is wrong with me?!" mess for about 7 months now.
she throws up often, has dry heves (that is when you have nothing to throw up...sometimes if you swallow a bit of water you can then vomit and it will stop the dry heves)
she runs a low fever often, has sinus infections all the time, sore throat, dryness and pain in her stomach and mid to lower back.
the only thing they can find wrong with her is the epstein barr virus

 
Old 03-25-2005, 10:48 AM   #19
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Re: Epstein Barr Virus - ???

To make an incredibly long story short....
I had horrible stomach problems when I was younger and I was finally diagnosed with Gastro Paresis from the EBV. My symtoms were different than most people's with GP but you might bring it up to your doc (one of them at least). My stomach was paralyzed and I was sick ALL the time. I went through many doc's telling my mom (i was 10 years old at the time) that it was in my head. I understand what you are going thru, and I am so sorry!! I hope you find help for whatever you have!

God Bless

alison

 
Old 04-01-2005, 08:19 AM   #20
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Re: Epstein Barr Virus - ???

Alison:

Thanks.

I had the Gastro Paresis test done a few months ago with negative results (nothing like eating radioactive eggs and laying under an X-Ray machine for 2 hours).

Right now I'm on anti-depressant and valium. All doctors say it's my pain is in my head. I continue to have dry eyes / dry mouth / dry sinus and I'm nauseous all the time.

Occassionally, I go for a massage to in oder to relieve my stress / anxiety. I get sicker after the massage. More nauseous.

I'm at a loss. My wife suffers similar symptoms. I really do believe I have some sort of virus which I passed along to my wife. I've read about EBV and most articles talk about mono and how 80% of the population has had mono with no long term effects.

My infectious disease doctor says it's nothing to worry about. Yet I'm sick and my wife is too.

ALL HELP / THOUGHTS ARE APPRECIATED!

Thanks!

 
Old 04-20-2005, 04:00 AM   #21
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Anne Whetstone HB User
Re: Epstein Barr Virus - ???

Quote:
Originally Posted by mranxiety
A few months back I was diagnosed having had the Epstein Barr Virus. Not sure when I contracted... but the labs should I was exposed / carrier.

What are the long term risk of such infection? May be this is the cause of my health issues (gastritis...nausea....fatigue)

Thanks,

I also have Epstein-Barr Virus, and have been sick for several months. I just had blood work and the titer came back at 179. I do believe that is quiet high.
I have been told that fresh vegetables daily, fish, vitimins, and rest can get us back on our feet. Today everything is being tossed from the refrigerator. New Start. Also, going to research Infectious Disease Doctor. Good Luck

 
Old 01-03-2006, 04:02 PM   #22
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Re: Epstein Barr Virus - ???

Terienne:

Thanks. Still searching for the cause of my pain and symptoms. Docs found enterococcus faecalis bacteria in urine/fluids.

I'm being treated w/ Amoxicyline (30 days) followed by Tequin (60 days) all under the advice of the docs at Johns Hopkins.

I am almost done with my treatment and feel no better.

I know my search will go on.....

Regards,

MRAnxiety.

 
Old 03-19-2006, 01:18 PM   #23
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brid HB User
Re: Epstein Barr Virus - ???

hi mr anxiety, i dont belong to this board, but ncgirls88 is right, get tested for lyme disease! even your test is posive, doesnt mean you dont have it, specially if you havent done your test at igenex, igenex is the only research laboratory for lyme in the world,the use much sensitive antigens than any other lab in the world, 98 percent of the people from the lyme foum, including me,m tested negative several times until we sent our blood to igenex..all your symptoms sound like mine, i have lyme disease and brucellosis, good luck

Last edited by brid; 03-19-2006 at 01:21 PM.

 
Old 04-19-2006, 06:09 AM   #24
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Re: Epstein Barr Virus - ???

Hi MrAnxiety,

I have got the exact same symptoms as you and I think I got it a similar way based on your posts on other forums and to put your mind at ease I had really no chance of it being what you were worried about on other forums (I've tested negative) - and my wife only suffers the dry eyes since the time of my suspected exposure (and she has felt a little more gas lately). This only happened to me recently about 3 months ago but as a comparison can you remember if your eyes started with photophobia and if your stomach pains came on suddenly and acutely at first then slowly became more chronic but still acute on occasions?


Regards,
markaussie

Last edited by markaussie; 04-19-2006 at 06:10 AM.

 
Old 04-20-2006, 10:52 AM   #25
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Traumatized HB User
Re: Epstein Barr Virus - ???

Hello all,
Sorry to bud in...........
I have tested for EBV after feeling sick like a dog for half a year...stomach pains, liver problems, eye probs, extreme fatigue, burning or dead extremities, painfully swollen glands, aching teeth and ear aches as a result and more goodies. My dr brushed me off like a lunatic that we all have ebv in our blood so who cares. I am having difficulties getting out of it. My titer reached 789 and should be decreasing now but I am under no medical care atm because where I live, it is treated as if there is nothing wrong with you (Eastern Europe is a bit backwards). My dr. said I am just an "extreme" person that it is nothing. Hmmmmm, I would like to see the approx. 20 medical drs I have seen in the last half year live with these incredible symptoms for one day.
Any suggestions?
What has helped you all?
I can not just take time off of work atm, I have missed far too much.
Any suggestions would be appreciated.
Thanks!!!

 
Old 04-22-2006, 06:58 PM   #26
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Re: Epstein Barr Virus - ???

Hi Traumatized,

Interestingly I think this may be a condition brought on by many different causes and takes many different but often similar paths in people...
Interestingly enough CFS/ME was probably originally thought to be a result of chronic Epstein-Barr but now is thought to have very wide causes one of which is chronic Epstein-Barr (you can see this referred to on the organisations web site if you search for Epstein-Barr )
[url]http://www.anapsid.org/cnd/diagnosis/names.html[/url] Although only about 20% present with Sicca type syndrome (i.e. dry eyes / mouth etc...) but hey we well could be amongst the 1 in 5
[url]http://www.immun********.com/library/print.cfm?ID=4534&t=CFIDS_FM[/url]
the middle starred part of that url should read (immune support) without the space between immune and support they seem to edit out certain words when posting.

I suppose I've only been living with this for a few months and I hope it will slowly resolve - I saw on ******* forum that someone had been living with similar symptoms for 7 years as usual the forum doctor had no idea what might be causing it – on the good side it seemed their symptoms might be becoming more manageable.

The only way I seem to be better is to treat the individual complaints - the gastritis is probably the most debilitating when it comes on but if I do the classic avoidance of fatty foods and chocolates and alcohol etc I don't seem to get it as frequently or badly - muesli and basic rather than acidic stuff seems to help - still seem to be a bit nauseas though but the extreme pain is lessened. For the dry eyes which is probably the most consistently annoying thing I was using artificial tears but I really think for me that may not be the best as it seems to wash out any small amount of the body's own good tear production and since I stopped I have found slightly better natural production - also eye exercises looking up down left right to exercise eye muscles and making sure to blink / squint / yawn- and avoiding computer screens is probably really good except that I program computers for a living which makes it a bit hard. For the ear aches I don't really know if I get good rest if the gastritis doesn't stop me then it's not so bad for me – but it is constantly there at a low level. The dry mouth may be improving a bit and seems to also improve with better diet and just drinking water and perhaps your own juices not store bought ones. Traumatized did your symptoms start out sort of acute then more chronic and occasionally acute – mine did at first it seemed like my stomach was going to disintegrate then my eyes were really photo phobic and I had something like an extended conjunctivitis then a sore tongue and ear pain which all seem to be more chronic now – also I had some tingling in hands and feet but that seems to be gone for me know thankfully.

Please keep in touch I'd like to share my experiences with you.


Regards,
MarkAussie

Last edited by markaussie; 04-22-2006 at 07:21 PM.

 
Old 04-23-2006, 06:22 AM   #27
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Re: Epstein Barr Virus - ???

Dear markaussie,

I will give you a little background on my medical history regarding "herpes"...

I got the chicken pox at 13 and they were very severe....I looked like a walking blister. Luckily only a few scars remain but ever since I have suffered from depression, fatigue and achy joints from time to time. I was a child who never got sick so the post-chicken pox symptoms were a puzzle for all of us. I was always told that I am just burnt out or extreme. I remained a good student despite but I remember the agony I was in sometimes from panic attacks brought on by exhaustion about going to school etc... Then I just learnt to live with it. I am normally a hyperactive person (hyperthyroidism in the family and my test results are on the edge) so I find it mentally debilitating.

Anyway, I ended up picking up HV1 and 2 somewhere along the way in my life as well. I had a huge herpes blister as a result across my whole chin (about 4 years ago). I felt runover and was diagnosed as having had a sun stroke (doctor's lack of knowledge sometimes amazes me out here in Eastern Europe). Ever since the herpes facialis, I had a "sun stroke" episode every summer and once again, learnt to live with it. Then, 2 years ago I had my usual sun stroke and my first molar started to ache and that was when all hell broke loose. I went to the dr. and he ran a test for EBV and said that it is just slightly elevated and that we all have it in our blood...I think he said sth about the titer being 55-60. The dentist drilled into the tooth and I had trigeminal neuralgia on that side of my face. I slurred, had ear aches, numb cheek and incredible pain. Then came the antibiotics a half a year later to calm the tooth down and I developed general lymphedenopathy which was topped off by a prescription of Gabeptin for the trigeminal neuralgia. I was half dead and sick as a dog. Everything was blamed on my teeth for 1 1/2 years...my dr refused to have me tested for Boreliosa and other goodies until I had all of my wisdoms extracted because they could be what's causing the gland pain and swelling. I looked like a chipmunk non-stop. My parotids and submandibular glands were swollen, hot and achy in frequent episodes. Only one oral surgeon at the time (last summer, a year folowing the toothache) said "it looks like she has mono." Nobody believed it so all wisdoms were extracted plus the first molar and of course, the problem persisted. Somewhere between the summer and xmas I had the mumps. I can't tell which parotid gland swelling episode it was because they have all been extremely painful and connected with nausea.

Since everyone was focused on the whole thing being a "dental" problem, nothing was done, just a lot of digging around in my mouth looking for the hidden problem which was never there to begin with. I spent the summer feeling nauseous, swollen, with rheumatism, aching muscles, affected head pressure, itchy skin, ear pain, jaw pain, burning sensations in my extremities, speech probs etc.. the episodes have come and gone ever since on a regular basis and with each, sth new. Following Christmas, things have worsened...I had an episode which involved my liver so I am assuming Hepetitis A? but I never found out because the dr literally told me to leave him alone and go somewhere else. I now have internal back pain from that which I believe is from my liver. I demanded copies of test results before I left the dr. and I couldn't believe my eyes...(I had been waiting 3 weeks for some bio lab test results)....the tests came back positive for HHV1,2 and 6, CMV (low) and EBV (789ish) plus the mumps which were no longer active. I finally knew what was causing my health problems. Since then, I have had more episodes which have affected my nerves mainly so my trigeminal nerve on one side of my face causes a vision probs, sinus, ear pain, facial swelling, dental pain and odd head pressure. You can feel it travelling along the nerve, it is a horrific sensation. This form of attack is by far the worst other than the liver one. Nothing helps, it just fades away and comes back again. My feet and hands start to ache as well plus a feeling of pneumonia. The whole thing seems like a bad joke. Luckily I have found a good dentist who is trying to help and after 2 months of searching for drs who will believe me and help, I finally suceeded on Friday. At a pain clinic, the dr. gave me some meds for neurology and completely understood what is going on and said that drs don't know what to do with this and are afraid of it so they prefer to brush you away. The dentist at the hospital said that the herpes facialis I had 4 years ago was stored in nerve memory and reactivated by dental work. Because I had it on my chin, it is travelling along my trig nerve. I have to wait one month to see the internist and 6 weeks for the neurologist. For some reason, the herpes viruses I have accumulated in my short life have decided to travel along my nerves. I admit, I am worried about worse things such as developing MS which is often connected with herpes viruses.

There is so much to write...I hope you could make some sense of all of the above. Basically, I have had 2 bad years but the last one has been extreme.
Take care

Last edited by Traumatized; 04-23-2006 at 06:31 AM.

 
Old 04-29-2006, 07:19 PM   #28
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mranxiety HB User
Re: Epstein Barr Virus - ???

Traumatized:

I feel for you. Same story here. I have been brushed off the "Best Doctors" in the United States -- including those at top medical institutes such as Johns Hopkins, Columbia, Cornell Medical and Mass General.

I have EBV. I have HSV1. I now have Enterococcal Faecalis which no one knows how to treat or if I should be treated at all?

Last week I had a lip biopsy to rule our Sjogren's Syndrome...... I guess the 6 ANA / SS / HLA B27 Gene test were not enough. All negative as well as the lip biopsy.

I have ID docs telling me my conditions are related to Rheumatological issues. My Rheumatologists tell me to consult with Infectious Disease. One big circle.

As mentioned earlier, I have an Enterococcal Faecalis infection of the prostate. However, the bug does not show up in my urine (even after a prostate massage)???

So - my urologist says there are no urological issues. But - what I have 3 labs results telling me there's E. Faeclis in my semen. Not one...two....but three lab results. Nice!

Its my understanding that this bug lives normally in the intestine... so I'm going to have my GI doc check out what's going on (colonscopy).

Curious to hear your thoughts.

Mr. Anxiety

 
Old 05-16-2006, 10:19 PM   #29
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Re: Epstein Barr Virus - ???

Hi Mr Anxiety,

have you ever tested for HTLV-1 human T-cell leukemia virus type 1)? I have read recent literature that this can mimic Sjogren's and also causes HTLV-associated myelopathy/Tropical Spastic Paraparesis (which would probably explain our colon problems). Lots of people are asymptomatic but a significant percentage are not and have major symptoms / can develop some major illness. I'm going to get tested.


Regards,
MarkAussie

Last edited by markaussie; 05-16-2006 at 10:26 PM.

 
Old 06-01-2006, 02:16 PM   #30
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Re: Epstein Barr Virus - ???

terrianne, i have been tested postive for CMV. never even heard of it. but i can also say i am sick of being sick too....doc gave no treatment, says i have to fight it on my own. has this virus affected your liver or any other organs. my liver tests were moderately high. and i have pain under ribcage all the time...my doctor says i should be better within 4-6 weeks but i've been sick like this for 6 months...hope u are well now....best wishes to you.

 
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