Specialists?

Who should I see? Is there like a virologist that secialises in viral infections? Ive been to md's. Ive been to neuros. I seem to have some sort of chronic reoccuring infection but havent been able to get tabs on it. Some years I spend 3 months in bed with this infection some years only about 6 weeks. Some years I get a bonus and get 2 in the same year. The infection feels identical to the initial infection tho never as serious and the post infection recovery time is much faster and I seem to return to full(post E) mental function after about 2-4 months.

Kanker sores are usually a sign that an infection is brewing. So I was pondering the use of valtrex or something like that. Its been 10 years and Im pretty tired of worrying about how many im going to have this year, every year. Ive been to my family doc and he looks at the back of my eyes in a very dark room then he says dont worry about it and sends me on my way.

Is it post infectious E? Is it E? Is it meningoE? I have no idea but I would like to know and find a way to minimize it or prevent it altogether. I can barely leave my house right now because of the symptoms and am not looking forward to another month or two of couch surfing. My orignal E was EBV. I have pondered wether a simplex e somehow set up shop and every time I get even a cold I go post infectious e.

By Lance
Posted July 21, 2008 at 9:31 am
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I'm clueless, but I'd say that's downright scary. I had to look at the National Center for Infectious Diseases webpage just to get an idea what we're talking about.

http://www.cdc.gov/ncidod/diseases/ebv.htm

Not surprisingly it says, "When such an illness lasts more than 6 months, it is frequently called chronic EBV infection. However, valid laboratory evidence for continued active EBV infection is seldom found in these patients. The illness should be investigated further to determine if it meets the criteria for chronic fatigue syndrome, or CFS. This process includes ruling out other causes of chronic illness or fatigue."

I'd certainly say that any recurring illness (or symptoms of illness) should "should be investigated further". But finding a doc to take something serious seems like it can be downright elusive and frustrating.

I wish I had an answer.

Lance

By countingsheep
Posted July 21, 2008 at 11:43 am
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I wish I had an answer for you too. I can tell you, that after my initial infection, I also experienced periodic 'relapses' of the high fever and exacerbation of all of my symptoms. These episodes would occur with less and less frequency as the years progressed. It meant multiple miserable ER visits, and more completely disabling times.

The only good news here is the improvement over time. It sounds like you see that too? Of course, if you can find a doc to figure this out, you have to! But if not, have faith that our bodies sometimes figure things out? Some improvements over the years are still better than nothing (if our medical system continues to be clueless).

Sorry I don't have a better answer...

By BigDaddyT
Posted July 21, 2008 at 6:12 pm
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I believe the duration is getting shorter but during the recovery time I go full howard hughes germ free zone mode. So I lose half the year. If the infections stop and the delirium like attacks ceased I could probably get these phobias under control.

I look up on the internet and there are virologists but I dont think they are like mds where they have a practice and you see them. I think they just work with viruses in a lab somewhere. I was looking for confirmation.

I dont have chronic fatigue so I would be hard pressed to be diagnosed with cfs. Theres those people with the chronic pain, I forget the name of the syndrom, and I dont have that either.

Its just anecdotal evidence but I felt like I had an active infection but had already applied for a job. I had to take a ua for this job. I got called into the higher ups office, after submitting a ua, and they said I was great for the job BUT my urine showed I either had mono, hepatitis or aids. This was years after my initial and something in my urine cued them into me having a serious illness? Seems like a doctor could find something if they looked if my pee gets me called into an office over a job.
Yeah, just to make you guys jealous. My E was 6 months not 1 or 2 weeks.

By dannon
Posted July 23, 2008 at 10:34 am
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Hey BigDaddyT,
I can't comment too much on "who" or "what kind of specialist" to see. I guess that depends a lot on who you are seeing now and who you have seen.

You bring up a lot of things here - that aren't necessarily related - though they could be.
Excuse me for breaking things apart and not writing all this smoothly together - just can;t do that any more.

OK
You say you were diagnosed with Epstein-Barr.
Epstein-Barr (I understand) pretty much hits a lot of people in some way sooner or later.
Epstein-Barr is what (I'm pretty sure) gives you Mono.
There are actually two Epstein-Barrs and I understand a person can be hit with both of them at the same time.

Lets say you have Chronic Epstein-Barr.
Here's a place that may help you find out what kind of doctor to go see.
Also - you may fins out more about your situation here:
http://cebv.org/

As for your Urine Test:
If there is Protein in there and/or various things having to do with white blood sells, these indicate the body is fighting off something big (I think).

It raises a flag - like finding coolant in your oil during an oil change.

Canker Sores and Cold Sores are two different things.
I'm assuming you are talking about cold sores.
You know, a cold sore on the face in no way implies a cold sore on the brain.
However, fighting off a herpes outbreak, like fighting off anything else causes stress on the system.
Some people feel like they are having a "relapse" when they are fighting off something else going on in their body.
Now I in no way want to say you don't have something chronic. In fact it does indeed sound like you have something chronic going on -= but I'm as much a doctor as Conan O'Brian is.
Check out that site and see if the people having Chronic Epstein-Barr ring some bells for you.
good luck
-dannon

By BigDaddyT
Posted July 23, 2008 at 12:47 pm
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Interesting about cankers. I always just assumed they were simplex. Once I got 9 or 10 at the same time. I couldnt even eat. LOL. However, sores in my mouth almost always precede an infection. So it appears to me that they are linked somehow. I get sores once a year. I relapse either immediately after or within 4-6 weeks.
When I think of something as chronic. I think it persists. 3/4s of the time im fine, not symptomatic at all. Maybe thats not what chronic means but thats what I think it means.
People with chronic epstein barr have symptoms different than mine. I mean, I have like 15 of the symptoms on their 100 symptom list but what post E patient doesnt. http://www.cebv.org/index.php?option=com_content&task=view&id=13&Itemid=30 Check for yourself. Brain fog check, irritability check, confusion check, difficulty concentrating check, headaches check, hypersomnia check, insomnia check, night sweats check, motor skills fubaar check, irrational fears check, photophobia check, depression check. These are E symptoms.
Shoulda seen the look on my optomitrists face when I went in and asked if I could order lenses darker than 97%. He asks why would you want that? I says its too bright outside. He is stunned and looks at me like im retarded.

By jackieb1
Posted October 12, 2009 at 9:54 pm
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did you have mono? my son got encephalitis from mono (an epstein barr virus). he got sick 19 months ago. i was trying to understand what was happening to you. do you get repeat episodes? how is your memory? do you know what part of your brain was affected? my son, is 18. the frontal lobe is where his brain swelled. you are the first person in 19 months that i found with a similar situation. i hope you are doing well. let me know!

By one_lil_red_hen
Posted October 13, 2009 at 4:31 am
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Well, Big Daddy, about that virologist... there are indeed virologists that see patients and not in a lab, but a clinic. You might want to try your phone book or check with a large university medical center as close to you as possible.

Something I found out after coming down with menigitis at first from West Nile Virus in 2005 followed closely by encephalitis within a week, was an infectious disease doctor.

You might want to try to find one of those in your area.

He did all sorts of tests to rule out this and that... funny what you remember and what you forget... but a couple of years later when I got where I could do something besides just stay alive, I read some test results from that infectious disease guy.

I had a reactivated Esptein Barr virus going on at the same time I was down with the West Nile. No wonder I was sleeping 22 hours a day for 4 months.

I kept having... what I'd call relapses... sleeping for days or weeks at a time... always tired, running a continual low grade fever, muscle spasms, cramps, etc. etc..

I'd say after 4 years, I am feeling somewhat recovered. At least the long sleeping periods have dimished, but I could still have the sleeping for days thing.

Not too much brain power and it doesn't take much exertion in that area to put me to bed for about a 6 hour nap.

I'm all about the Howard Hughes guy. I won't even turn a doorknob with my bare hand away from home. If I go to the doctor's office, I ask for a mask, even if I'm there for my foot. I don't touch my face when I'm out in public. If there is hand santizier anywhere I'm all over it, and I use a lot of it. I rub my hands at least twice and then I put more on my hands, rub my hands together and rub it on my face, especially around my nose.

When I get home from the grocery store, first thing I do is wash my hands, then I use a soapy rag to wipe off anything that has plastic on it and rinse it off under the faucet, dry it and then put it away. I wash all my vegetables and fruits with a lightly soaped sponge. I wash off the tops of every can, soda, etc. and then again before I open it.

If someone says they aren't feeling good, I get can't far enough away from them. In the beginning I caught everything I came in contact with, just breathing the air in the same room with someone and I'd get sick, and I'd get it bad, whatever it was.

I think my immune system is recovering some. But I'm not taking any chances. Maybe I've just gotten really good at preventing a germ getting a chance at me.

I went to my daughter's recently. She said she was getting a cold, felt like it was dropping right into her chest. I couldn't leave fast enough. But then I had the grandkids over for my daughter and son in law to go out for their dart appreciation day, and one of the kids was coughing and didn't feel good. Then my old cat which has had to move in with them has turned off for the worse and I just had to go spend time with him. My son in law was sitting two feet from me on the computer coughing and sneezing.

First my throat got sore, then my nose started getting snuffy and now today I started coughing and it's definitely heading for my chest.

The last cold I caught went into my chest and I wound up going two times to urgent care, one to a the doctor of the day who had an immediate opening and once to the ER for breathing treatments because I could not breathe. I was put on steriods, two different antibodics, a couple different inhalers and was told to rest... it's hard to rest when you can't breathe.

So, it's no wonder that fear grips my heart when I start coughing.

I'd say, see about getting an appointment with an infectious disease guy, if that doesn't work, then try a virologist, if that doesn't work, try finding a new primary care doctor who doesn't have his head up his butt, scratch that, I mean one who is more enlightened...

Also, what meds are you taking?

~hen

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