If you are having symptoms I think you should do what Lou said and rest. I also think you might contact an infectious disease doctor to check out those symptoms. You might get a good referral from your regular doctor. But keep in mind that many doctors don't believe there is really any such thing as chronic EBV, post viral syndrome, Chronic Fatigue Syndrome, etc. And those that do aren't well versed on how to treat it.
As for implications, EBV has been linked to many things but keep in mind that so have many other viruses. There are well over 10,000 viruses out there.
My suggestion is to begin to research EBV. You will get a lot of info if you do a search with a search engine. Again, remember that most people recover from EBV and don't develop long term anything.
I think your information is correct. Learning as much as you can about this dreadful condition, and seeking out a ' Doctor of Infectious Diseases ', is the RIGHT thing to do. Also, you can learn about EBV by doing a search on your computer. I was diagnosed as having the ' Chronic Epstein Barr Virus ', in June of 04'. It was conclusive with blood work.
When I asked my Doctor what could be done for this, he replied,
' there's nothing that can be done, and you may have this for a long time ! '
Before this diagnosis, I was diagnosed as having the MUMPS, as my parotid glands, (the glands that you have the MUMPS in), just below my ears were swollen about the size of a large egg, pertruding into my cheeks, (by four Doctors.)
Finally, my GP called this parotiditis, (infection of the parotid glands), since the MUMPS wouldn't have gone on so long.
My symptoms have continued, which are : low temp., painfull and swollen parotid glands, continual sore throat (No tonsils), a general feeling of having the flu, and I couldn't stay out of bed, as the fatigue has set in.
I saw a Doctor of Infectious Diseases in September, and since this time, I have been diagnosed with many different virus's, ' Chronic Fatigue Syndrome', being one of them, ' Sjogrens ', and ' Cytomegalovirus ', to name a few.
I have learned that this condition can affect some peoples immune symptoms, and it can attack our organs in our bodies, realizing that everyone is different, and this can affect everyone differently.
This is what I am dealing with now.
I want go into this part, unless someone is interested.
However, I can tell you that I STILL have the symptoms, I initially named.
In all actuality, I am very confused, and very ill. I am fifty nine, and I am too old for this ! lol.
Noone seems to understand that I am ' sick and tired of being sick and tired.'
Everything I do takes great effort.
I would appreciate any input, from anyone who has any clues about EBV.
I am so glad I found this site, and hopefully I can relate to others who have this, and help in some way myself.
Thanks for listening,
The Following User Says Thank You to terrienne For This Useful Post: Toosmart282 (10-19-2012)
First of all, I can only tell you what is going on with me, and my own experiences. And, I do hope this info. will be of some help you.
I am sure that you read my symptoms of the ' Epstein Barr Virus ', and the fact that I was diagnosed back in June.
My main suggestion about the EBV, is to go to a Doctor of Infectious Diseases. They say there's no way to cure this condition, but they can treat the symptoms. This IS the Doc to go to, in my opinion.
What I am going through now, IS intestinal problems, nausea, and total fatigue, just as you said !
Back in November of 04', I had a nagging ache, somtimes escilating into sharp, knife stabbing pains, in my right side. (I was so ill during the holidays, it was pityful.)
This nagging pain has continued/continuing....., in my right side.
In December, I was walking the floor on a Sunday night, doubled over in this pain in my right side (upper and lower). My Hubby rushed me off to the ER, over an hour from where we live.
The Doctor there did blood work, and did a CT Scan, with dye. They told me that they didn't find anything wrong. The next day I was in my Doctor of Infectious Diseases' office.
After looking at his lap top, he went to see what my CT Scan in the ER showed. He came back to say that it showed I had a dialated colon, on the right side. He gave me a powerful Antibiotic for 10 days, saying I probably had an infection in my intestines. My nagging, aching pain in my right side subsided a bit, for a few days, after taking the med. ! Yeah !
That day in his office, he did blood work again, and I had an Ultra-Sound done. He came in saying they ONLY saw ' sludge in my gallbladder ' !
He asked if he could call in a surgeon, and of course, I agreed. His suggestion was to repeat the CT Scan, with dye. I saw both Doctors looking at the computer type screen.
The surgeon came in and poked around on my abdominal area, and said he didn't see anything that warrented surgery at this time ! Yeah ! That's what I wanted to hear. I don't want to have surgery unless they tell me I am going to die.
Since that time, the pain is localized in my gallbladder, and I have read many stories about the matter of ' ONLY sludge in the gallbladder ', and I was hearing the same thing that was told to me, ' Ahh, nothing to worry about ! ' And I also heard stories about unconcerned Doctors. They make me sooo tired.lol.
The pros and cons on this was some folks, who ONLY had sludge in their gallbladders, had to have their gallbladders removed, only to find that IT was diseased. And, some did well, and some were left with the pain.
I am soooo confused, to say the least.
Not to take up all of your day, reading this.............,
in essence, since December I have had every test imaginable. One test that I had, where I had to drink the chalky stuff, and have an x-ray every fifteen minutes, after the second cup, I was doubled over in PAIN ! The nurse was running around talking to the xray Tech., and he was saying..........,
' She is having a gallbladder attack ! ' I thought I was going to die ! Since they told me this final test was a ' piece of cake ', I wouldn't have to have anyone to drive me. However, things with me went HAYWIRE !!! So, I had to ly around for about an hour, before my hour and a half long trip home.
This test was Negative also. What a _____, anyway I don't have to worry about what that test could show.
The Doctors just look at me and say that I have them stumped, and they can't seem to find out what is WRONG with me. They called in the GI Doctors and the whole nine yards. I was in the hospital overnight for their lovely tests.
At this point and time, I went to my local GP, last week, as my throat was awful and I could hardly swallow. He gave me a strong Antibiotic and sinus meds., so for now, I am feeling better.
Tell me what YOU think.............., the Doctors tell me that I have a
VIRUS, and they don't treat it with Antibiotics. BUT, I am much better when I DO take the meds., recon there's something bacterial going on........,??????,
I have read about the EBV, from one end to the other, and I know that it can affect our immune systoms, and vital organs. I guess it's different ones for different folks.
I truly Do hope I have helped in some day. If there is anything else I need to tell you, or if I left something out, you can surely ask questions.
I am so glad to find this Site. At least these folks can understand, if they have experienced the same problems.
What part of the US are you in? I ask because I live in the Northeast and have sought out "NY's Best Doctors" (Infectious Disease / GI / Endocrinologist / etc.) thinking they would be most qualified to figure out what's wrong w/ me.
Over the past two years, I've been tested for EVERYTHING under the sun. (HSV 1 2 / HIV 1 2 / Gono / Chlamydia / HEP ABC / CMV / SS). The only test to come back positive were: EBV (I was told almost everyone carries this virus and not to worry) and H. Pylori (I was treated w/ triple therapy and after treatment my breath test was negative). After treatment I had an Endoscopy which confirmed my treatment was successful. However, I still have dry mouth, dry eyes, dry sinuses, stomach cramps / pain. I can't take the pain/discomfort. My doctors (GI / ID / Endo) say -- Nothings wrong. It's in my head and have given me prescriptions (Lexapro / Paxil / etc). I will not start any meds until someone tells me what's wrong.
Now my skin is drying up. The tips of my fingers...the palms of hands. Docs say -- its the winter. Bull. This never happened to me before.
Last month, I too had the Gastric Emptying Test (eat radioactive eggs and sit under an x-ray machine for two hours) -- result - Negative.
The following week I had a CT Scan of my Ab done. With the exception of a small cyst on my kidney - the results were 'unremarkable". Nada.
Back in October, I went to my doc and complained about severe pain in stomach just below my sternum. He said ... ahhh it's nothing. It's your nerves. Well, my blood test showed that my pancreas enzyme levels were very high. I had a sonogram done...everything looked ok. Enzyme levels return to normal. A few weeks later, my liver enzyme (AST and ALT) were high. I went to an endocrinologist who test for liver diseases (hemocromotosis, etc. / HEP ABC) all were negative. Also, I did a 24 hour urine test. Nada.
In August, I went to the ER room because of severe chest pain. They did blood tests, chest x-rays, EKG -- Nada again. The ER doc said I had "gastritis". The endoscopy mentioned previously confirmed - "gastritis".
My wife is now suffering from severe dry eyes. I am afraid I my have passed my disease to her.
I'm very tired. Very sick to my stomach. I dry heave often and have bad headaches. I work in very hectic, fast-paced and competitive environment. I can't hide this condition any more. I'm avoiding people because I don't feel well.
i had this last year. other than feeling tired all the time and feeling like i was coming down with a cold all the time, i had no symptoms. some night i was so tired that i would pass out on the sofa at 8!! you just have to let it take its course since there is no cure. get lots of rest and minimize stress. apparently stress can aggravate it,
Mr. Anxiety - I had all of your symptoms and more and I have tick borne illness - lyme, Babesia and Ehrlichia...the Ehrlichia can cause all kinds of stomach stuff.
Anxiety is a big symptom with tick borne illness too. I tested positive for EBV too but finally went through IgeneX labs in Palo Alto, CA and came back positive for lyme and coinfections after testing negative through other labs.
Please go to the lyme board here on Healthboards and read up. If I were you I would find an LLMD (lyme literate doctor) and start testing for tick borne illness.
Thanks for your reply / advice. I tested for negative for Lyme two months ago. Not lyme.
Two weeks ago I started taking Klonapin (.5 mg / day). Not much help.
Today, I tried weight-training and had to stop after 30 mins. I started shaking and felt very sick. The skin on my hands get very dry while working out... I don't sweat. Last week, I went to my Endo for blood test / etc. She said everything (TSH / Cort levels) were all fine. All doctors think it's anxiety. But I have physical pain and symptoms. Can my mind alter my levels....pancreas enzymes ..... cause conjuntivitis? I do not think so.
IF ANY ONE CAN OFFER ME ADVICE ON WHERE TO GO FOR THE BEST DIAGNOSTIC SERVICE .. Please let me know.
I live in NYC -- there are bunch of good hospitals and doctors. But no one has offered me and definitive explaination on what's going on with me. I'm think John Hopkins or perhaps Mayo Clinc.
Sorry I am just now getting back in touch with you...........,
I DO have dry mouth, and I have to keep water beside my bed at night, because I wake up with IT sooooooo bad.
I DO have dry eyes.
I DO have sinus problems, all of the time.
Also, I am contending with flu like symptoms, every day...., low temp., sore throat, ringing and pressure (sometimes pain), in my ears, aching bones and muscles.
I get a bit better, then I am back down again.
My Doctor still says that I have Chronic Fatigue Syndrome. AND IT IS REAL !
I can hardly stay out of bed.
I DO still have abdominal pain, and sometimes I have had to rush to the ER.
The pain doesn't seem to be localized, however I know that some of this is due to the ' sludge in my gallbladder ', that they found during some of those nasty tests that have been done, which they seemed to think it was nothing to worry about ! Since then, I have read, and from experience, I THINK that IT CAN be SOMETHING TO WORRY ABOUT !
Nope, never had any abdominal surgery, even though I am fifty nine, and I have already gone through ' the change.'
I also worry that my husband might be having some of this STUFF ! So, I do understand your concern about your wife. (My Doctor swares ' NOT ' !)
This is what I DO know, speaking for myself. I hope it can help in some way.
My Doctor of Infectious Diseases did a blood test for Sjogrens..........,
(pronounced SHOW-grens !) Although I do not have a conclusive diagnosis,
if you would like to do a search on this, you will find some of these same symptoms. Strange, huh ? This condition also plays havoc with the immune system. This explains the total fatigue. EVERYTHING I do takes great effort.
Another condition I have going on is one that you may have read about me having, which is ' swollen parotid glands ', about the size of a large egg, under my ears and into my cheeks...........,
STILL, since June ! And, I have swollen lympth nodes in my neck and under my arms.
This is another symptom of Sjogrens.
This is what I DO NOT know, or understand. The Doctor talkes about all of these conditions being viral, and that Antibiotics do NOT seem to help.
However, a couple of weeks ago I went to my local GP Doctor. My throat was horrible, and felt like it was on fire (no tonsils, thank God !). He gave me a powerful Antibiotic for ten days.
While on the med., and for two weeks after, I have felt so much better. But, now that the medicine has worn off, I am right back where I started.......??????
This is a huge puzzle to me !
This is what I DO KNOW, from my own experience......, I truly DO think I have THE GREATEST DOCTOR EVER ! (Can't help you with this one, since I am in the southeast !)
I called and talked to his nurse about a month ago, when I woke up, doubled over in abdominal pain, and told her that she had to talk to the Doctor, and tell me something to do, or send me some kind of medicine for the PAIN, or meet me in the ER !
He called in ' Levsin ', AND, IT HAS HELPED SOOOOOO MUCH ! They are little tiny pills that are put under the tounge (and have Phenobarbitol (sp), in them).
When I did my search on Levsin, I found it is given to folks who have IBS.
My Doctor had already told me that he thought I had this.
I DO know what you mean, and the frustration you feel when it comes to how our Doctors seem to be so passive about our feelings.
I know that these conditions ARE in my body, NOT IN MY MIND, as I pay my Srink big bucks every month, to tell me that these are NOT IN MY MIND,
but in my body ! lol.
My main consolation with all of this is that my Doctor will not stop, until he leaves no stone unturned, and can give me some sort of conclusive diagnosis !