Conference turris::womannotes-v1

    I recently read an article about this, but I'm under the impression
    that it isn't limited only to women.  Is this, in fact, true?
    
    

    Men have also been diagnosed with CEBV, though the incidences of
    CEBV are much more common in women or so it currently appears. It
    appears there may be some kind of genetic predisposition to the
    virus, since a brother and also a sister in my wife's family also
    have been tentatively diagnosed as having CEBV.  The test for it
    is not very conclusive.
    	
    

    An acquaintance of my father's (a man, incidentally) suffered from this
    virus for a number of years.  He decided the treatments were worse than
    the disease and entered a program of treatment through diet and
    techniques to bolster the immune system.  He still has it, but he 
    looks and acts significantly better than his former drugged-out self. 
    
    This was a regular, medically supervised program at a well-known
    (midwestern?) hospital. Unfortunately I scarcely know the man and don't
    remember where the program is located, but if you entered a note
    in the HOLISTIC notes file you might be able to get some more
    information about it. 

    --bonnie

    A good friend of mine has a very severe case of chronic Epstein
    Barr.  Her doctor is Peter Braun, who works at the Institute for
    Health Research at Harvard, and who specializes in this disease.
    Her course of treatments is very elaborate, and is still being
    "tuned", but she has gained considerable relief.
    
    Dr. Braun can be reached at 617-277-4451.
    
    							Ann B.

This was posted to Usenet net.med recently:

Article 1863 of sci.med:
Path: decvax!decwrl!pyramid!prls!philabs!aecom!werner
From: werner@aecom.YU.EDU (Craig Werner)
Newsgroups: sci.med
Subject: EB or not EB - that is the question
Keywords: Epstein-Barr virus, Chronic Fatigue Syndromes, JAMA
Date: 5 May 87 04:57:49 GMT
Organization: Albert Einstein Coll. of Med., NY
Lines: 119


	The scientific journals (that is to say, Newsweek, New York
Magazine, and The National Enquirer) have recently reported the
association of chronic fatigue with lingering infection of EBV.
Since recently, one of the less reputable journals (The Journal of
the American Medical Association) published a series of reports on
the same topic, I thought I'd reproduce the review article or the
set.


EB or not EB -- That Is the Question

Editorial
Journal of the American Medical Association (JAMA) 257:2335 (1 May 1987)

	The Epstein-Barr virus (EBV) infects most humans.  Nearly all
infections of infants and children are asymptomatic, but about one third
of all infected adolescents and young adults develop acute mononucleosis.
A hallmark of that disease is the infiltration of blood and tissues with
reactive T-lymphocytes, denoting an exuberant, perhaps excessive host
response to the virus.  In the setting of deficient immunity, acute EBV
infection may present as aggressive, and even fatal, B-cell proliferative
disorders.
	Whatever the clinical outcome of the initial exposure to EBV, it
is certain that this herpesvirus persists for life in salivary glands and
B lymphocytes.  In a sense, these reservoirs of latent virus constitute a
barometer of immune competence.  The ability of EBV to reactivate, as
reflected be rates of virus shedding in the saliva and levels of antibody
to EBV antigens, depends inversely on the integrity of the cellular
immune system.
	Chronic illness is another indicator of faulty immune containment
of EBV.  A severe form of chronic EBV infection is a rare progressive
disorder that presents with fever, fatigue, adenopathy, interstitial
pneumonia, and pancytopenia.  The diagnosis can be made by demonstrating
increased levels of EBV in tissues, cellular immune defects,
extraordinarily elevated titers of IgG antibodies to EBV Viral Capsid
antigens (> 1:5120) and early antigens (> 1:640) and the occasional lack
of antibodies to one or all of the EB nuclear antigens (< 1:2)
	It has been proposed that more subtle defects in the
immunoregulation of EBV permit milder forms of chronic EBV infection,
ones characterized by fatigue, myalgias, feverishness, lymph node
tenderness, and other somatic complaints.  Several recent studies have
described patients who are particularly distressed by the severity and
chronicity of such symptoms.  A suprising proportion of those patients
were found to have modest humoral or cellular immune abberations, to have
relatively high titers of IgG antibodies to viral capsid or early
antigens, or to lack antibodies to EB nuclear antigens.  These findings
were presumed to reflect either chronic expression of EBV or another
disorder in which an insult to the immune system permits nonspecific
reactivation of the virus.
	Media coverage of some of the reports precipitated countless
requests for EBV serological testing; this despite disclaimers that EBV
serologies cannot establish the diagnosis.  Thousands of tired but
tenacious patients joined local and nationwide organizations that were
quickly formed to exchange information and encourage research.
	It is with this background that one must view two articles in the
present issue of The Journal (257:2297 and 2303, May 1, 1987). Each
attempts to address selected aspects of the hypothesis that EBV
contributes to a syndrome in which chronic fatigue is the cardinal
syndrome.  Buchwald, et al, studied the prevalence of chronic fatigue in
a university based general practice setting.  Their data show that such
complaints are extremely common.  ALthough EBV serological profiles in
the "tired" patients were slightly higher than in the "non-tired" clinic
patients, the differences were generally not significant. However, as
indicated in the study report, it is by no means certain that these tired
patients resembled those of earlier reports, in terms of both the nature
and the severity of the illness.  For  example, had the onset of symptoms
been associated with an identifiable infection, and, if so, with what
clinical and epidemiologic features?
	Holmes, et al describe a Centers for Disease Control
investigation of patients seen in a single medical practice in Nevada.
When compared with those of other patients or control, antibody titers to
EBV and to other viruses were noted to be relatively higher in the few
subjects with the most protracted illnesses.  This finding suggests a
nonspecific humoral immune activation and decreases the likelihood that
EBV played a primary role in that outbreak.  The description of the
illnesses does not suggest acute infectious mononucleosis.  Rather, the
case cluster is reminiscent of many "epidemic neuromyasthenia" outbreaks
reported since 1934.
	An important observation of the study by Holmes et al relates to
the variability of the EBV serological results between laboratories.
This is a generic problem of serological testing and does not negate the
value of EVB serodiagnosis in acute infection.  Clearly, one can only
assess an EBV serological profile in the context of critically
established normal values for the reporting laboratory, a costly process
undertaken by few reference centers.
	The studies by Buchwald et al and Holmes et al focus heavily on
the question of whether EBV is associated with chronic fatugue syndromes
of sporadic or epidemic onsets.  Their findings do not refute a causal role
for EBV in the  chronic fatigue syndrome, but they do argue that EBV does
not underlie the disorder in many cases. Patients with the most extreme
abnormalities of EBV serology as determined in reference centers, and
particularly those who developed chronic illness in association with an
episode of acute infectious mononucleosis, remain likely suspects for
chronic EBV infection.
	We are left, then, to address additional possible etiologies for
the syndrome.  For organisms whose illnesses had a postinfectious onset,
other organisms must be evaluated, including a newly described
B-lymphotrophic herpesvirus (HBLV). While a possible association of the
the virus with the Nevada outbreak was publicized, data supporting that
suggestion myst be reported before their merit can be assessed.
	It no longer seems appropriate to consider all patients with the
chronic fatigue syndrome to be suffering from purely psychoneurotic
disorders.  On the other hand, we are still struggling to prove an
organic basis for this condition.  Unfortunately the present lack of
definitive diagnostic and therapeutic tools for assessing and treating
individuals with the syndrome leaves both patients and health care
providers frustrated.

			Stephen E. Straus, MD
		National Institutes of Allergy and Infectious Disease
			National Institutes of Health
			Bethesda, MD

-- 
			      Craig Werner (MD/PhD '91)
				!philabs!aecom!werner
              (1935-14E Eastchester Rd., Bronx NY 10461, 212-931-2517)
           "... you can do anything you want, but not everything you want."

    There was a story about CEBV on 20/20 (or was it 60 MIN?) quite
    some time ago - it was "discovered" in a small town in Nevada. 
    Quite a few residents were tired, listless, etc.  The disease affected
    family life - to the extent that after a period of time, some marriages
    ended - mostly because the so-called (at that time) disease was
    thought to be psychological.
    
    A few months ago Channel 7 did a series on CEBV and have found that
    there is an even more serious adjunct to it.  I'm sure if you contact
    the station - try to reach Dr. Alan Xenakis - maybe you could get
    more information.  I remember watching the series and taking notes
    especially since my sister-in-law has the disease.  They were away
    at the time (hence, the notes) and I remember there is a support/
    informational group on CEBV - I believe they are located in Weymouth.
    
    I remember when my sister-in-law was so tired - it was thought that
    she had a reoccurance of mono - but it lasted so terribly long -
    and she and her family were miserable.  This immaculate, busy, working
    mother became a person who could barely get out of bed - and when
    she did, it was an effort to get dressed, to take care of her family.
    It was really pathetic to see.  Of course, her doctors just couldn't
    understand why the "mono" was lasting so long.  It took a long time
    before she found out she had CEBV.
    
    According to the series on Channel 7, it is something we all have
    in our systems, but no one knows why it appears but they do know
    there is no cure for it.  After seeing what my brother and his family
    have gone through - I can say I'm sorry for what you and your wife
    are going through.  Hopefully, more information and support will
    help.
    
    Good luck.
    Trudy

     Could you specify which Channel 7 ran this?

     Susan

        Dr. Alan Xenakis is a Boston area TV doctor. I don't know what
        channel he is on, but 7 sounds right. That would mean that the
        channel 7 is WNEV in Boston MA. The reference to Weymouth (a
        town on Massachusett's South Shore) would seem to confirm this.
        On the whole, the only people who seem to regularly assume that
        everyone is in the same area are those of us in the Greater
        Maynard area, so when people allude to a store or TV station
        without mentioning the locale it is likely to be in the Eastern
        MA / Southern NH area. 
        
        JimB.

    Sorry about that - I keep forgetting I'm not writing to people ONLY
    in the Boston area.  I was talking about Channel 7 - WNEV-TV in
    Boston, MASS.
    
    Good luck - 
    Trudy

	The latest issue of another prominent medical journal, Rolling
Stone, :-) has a very extensive article on CEBV. It summarizes current
research (readably), interviews some experts as well as patients, and
develops a little sociology of the disease...apparently the causative
virus is fairly common, but the effects are greater the later one's
age of first exposure...so middle- and upper-class suburbanites, whose
childhood environments are presumably more antiseptic than those of
inner-city dwellers, get first exposure later in life and suffer the
symptoms more severely. If I recall correctly the same demographics,
for the same reason, characterized the post WWII polio epidemic.

	The article again underscores that one of the patients' biggest
problems is getting recognized as being physically as oppossed to 
emotionally unwell...but EBV is getting more publicity and 'validity'
among the MDs...

	

	BTW, it's the "Special Summer Double Issue" with that renowned
pharmaceutical team the Grateful Dead on the cover ;)

    Thanks for the references though I must say that the article paints
    the worst picture of CEBV I've heard yet.  My wife read it and had
    a migraine for 4 days. C'est la vie. Better the enemy we know...
    
    	Ray 
    
    	 
      
    	

            <<< COLORS::$2$DUA11:[NOTES$LIBRARY]WOMANNOTES.NOTE;1 >>>
                        -< Topics of Interest to Women >-
================================================================================
Note 445.0                        Epstein-Barr                        No replies
GCANYN::KUDLICH                                      12 lines  17-AUG-1987 08:37
--------------------------------------------------------------------------------

    Hello,
    
    My sister has Epstein-Barr :-(, and I was wondering what anyone
    knows about this disease.  I have read the series of two articles
    in Rolling Stone mag, and they are very depressing (although im-
    portant to keep an eye on...); does anyone have any more info?
    She lives in Somerville.  Has anyone heard of local support groups,
    The best local doctors, anything?  
    
    Thanks.
    
    Adrienne

	Sorry it took a while to post a reply but here's some information.

	The national chapter of the CEBV association is:

		National CEBV Syndrome Association, Inc.
		P.O. Box 230108
		Portland, OR 97223

		As their brochure says you can receive a list of local 
	support groups, a list of published literature on CEBV and copies
	of the articles not available in widely read journals, and a guide
	to interpreting CEBV virus antibody titers if you send a 4 x 9 1/2
	self-addressed stamped envelope to them.  They are somewhat slow
	in their replies due to the volunteer nature of the group but we've
	always gotten the newletters, etc. eventually and they've improved
	quite a bit.

	The local chapter's address is:

		Mass. CEBV Association
		10 Mt. Ida Rd.
		Weymouth, MA 02189

		They hold meetings and discussions with various doctors,
	about articles, etc.  We haven't attended any of these meetings 
	because my wife keeps up on the relevant literature from the main
	chapter and she's also afraid she'll find others who are in much
	worse condition.

	As for doctors, Nancy has been to many. She's tried many drugs most
	of which have bizarre side affects such as loss of near vision, short
	term memory loss, etc. She's currently visiting Dr. Braun mentioned
	in this note somewhere. He's treating her migraine headaches with
	CODEINE and here depression with an anti-depressant ELAVIL. Both
	produce drowsiness and the CODEINE is potentially addictive.  None of
	the medication she's tried has done very much. CORTISONE was tried and
	worked for a while to alleviate some back,head pain and fatigue but
	cannot be taken on a long term basis.  ACYLOVIR used to treat viruses
	in the herpes family did nothing. It also has side affects. I'd pick
	up a PHYSICIAN'S DESK REFERENCE and look up any drug.  Doctors often
	forget side affects.

	If your sister is married/attached and could potentially get pregnant 
	she should be checked for a virus called CYTOMEGLOVIRUS which many
	CEBV patients have. It is implicated as causing a large proportion of
	birth defects even in women who do not have CEBV. Also quite a bit of
	the medication being used to treat women with CEBV causes birth defects.
	A doctor may forget to notify her of this information.

	
	The Rolling Stone articles were quite informative though they covered
	no information that isn't listed in the literature you can buy from the
	main chapter above.  An article in ATLANTIC this month is much more 
	grim and notes similarities between CEBV and AIDS,calls CEBV incurable
	and basically is highly depressing.  I'd look at it but take it with
	a grain of salt because they draw conclusions which I believe they
	don't have enough information to support.

	Good luck.  Keep a sense of humor. I have as much trouble dealing with
	CEBV as my wife does.  It is tough to deal with due to its nature. The
	afflicted , in cases like my wife's, do not appear ill.  She actually
	look pretty healthy and she uses a peculiar sort of reverse 
	rationalization to do some things.  The logic is 'Since I feel so
	miserable I should do the things that don't make me feel miserable.'.
	In her case, that's eating,shopping and travelling. She's gained 50 lbs
	since we got married 18 months ago, buys some article of new clothes 
	every week and enjoys day trips with her parents and older brother who
	live just down the street.  It's hard to have sympathy sometimes. 
        I remind myself that she's got this during the completion
        of her Master's Degree in Education though she wasn't diagnosed
        until recently.  Her dreams are shot though we're still working
        to keep them alive.
     
	Hope this help.  I'll update the note if I have any new info.

		Ray Hayes

    
                        

    A friend of mine was recently diagnosed as having CBEV.  She gave
    me a copy of a three page letter she received from Brigham and Women's
    Hospital in Boston with information about the syndrome.  If anyone
    would like a copy, please send me a mail and I'll be happy to give
    you a copy.
    
    Tracy
    

    From the Boston Globe Monday January 4th page 26
    
    Clue to Epstein-Barr Syndrome
    
    Researchers suggested last week that rubella vaccines introduced
    in 1979 may have triggered an epidemic of Epstein-Barr syndrome,
    and exhausting malaise that primarily strikes young adults. The
    syndrome, known as the yuppie disease, cuases a chronic fatigue
    that has baffled doctors trying to learn why it has become so prevalent
    in recent years.
    
    The finding indicate that people with the syndrome may have an 
    allergic-type reaction to a live, but weakened rubella virus found
    in a vaccine given to children to ward off German measles. Biologist
    Allen D. Allen of Algorithms Inc. of Northridge Calif., a biomedical
    research facility, said all 200 patients with the syndrome he studied
    had abnormally high levels of antigens to the rubella virus. "the
    sicker they were, the more evidence of [rubella] virus activity
    there was," Allen said.

    I would just like to say that I was diagnosed as having CEBS in
    January 88.  I got very sick in October with plurisy and pneumonia
    and ended up in the hospital for 5 days.  The weird thing about
    this was that I had been on penicillian for a sinus infection and
    then I really got sick!  What a good time.  In the hospital I was
    put on two different forms of penicillian and it seemed to help.
    
    The tiredness never got better.  You can't believe how hard it is
    just to muster up enough energy to get out of bed.  I would get
    up in the morning and get out of bed and go into the livingroom
    and sit in a chair and just want to go right back to bed.  I went
    to the doctor's at least once or twice a week.... All I wanted to
    know was when it WAS GOING TO GO AWAY!  I have had every test in
    the world and they could find nothing wrong.  I started to believe
    that I was losing my mind....  Finally I heard about the CEBS and
    asked my doctor if I had been tested for that.... He said no, because
    if I tested positive for it, there was nothing that could be done
    about it!  Can you believe it!  Here I had been going out of my
    mind and he told me that.  He gave me the test.   He said that it
    would take about a week to get the results of the test.  Well, I
    went through Christmas still not knowing.  Telling my parents, my
    boss, everybody I knew, that I didn't know what was wrong.  After
    about two weeks, I just assumed that since I didn't hear from him
    that yet another test was negative.  In January I called him and
    told him that I was going banana's staying at home.... please let
    me go back to work.  He said, ok, part-time.  I then said, well
    since I didn't hear from you on the results of the CEBS test that
    I assumed that it was negative.  He said, oh no, you tested postivie
    for it.  He's not a real big believer of CEBS to say the least.
    He has told me that what I have is "just a virus" that will work
    it's way out....  I had the same thing the year before, but not
    as diabilitating as I did this year.  
    
    Well at least I am back at work now on a part-time basis.  I feel
    pretty good until about 1:00 P.M.  then I lose all energy levels.
    I still have to go home and sleep for about 2 hours and then sortive
    glide the rest of the way through the day.  At times the highlight
    of my nights are just going to bed to sleep.... My husband has
    been very patient and understanding and to a point a little naggy...
    Did you take a nap today?  Should you go out and get more run down.
    Alot along those lines....  
                                                                  
    nancy
    
    
    

    	I've also been described as 'naggy' (302.17).  I'm having a
    very difficult time dealing with someone who cries every night about
    her pain so I remind my wife constantly of the things that definitely
    give her headaches and aggravate her fatigue, alcohol, late nights,
    etc.  She doesn't like this very much but recognizes why I'm doing
    it.  After 2.5 years of dealing with someone who is in constant
    pain, I feel I have the right to remind her to avoid as much of
    it as she can.
    
    	Ray.

    re: .17 --
    
    This is mildly off the subject, but . . .
    
    I seriously think you should get a new doctor. 
    
    I know it must be hard to think about a decision like this when you're
    always tired and sick, but why put yourself in the hands of someone who
    obviously doesn't give a darn about your health?  You obviously can't
    trust him to tell you the truth about your condition.  Yeah, this one's
    not life-threatening, but what if it were something else?  Could you
    count on him to explain all the options and help you make a sensible
    choice? 
    
    Don't you deserve better than this kind of hassle and runaround?
    You've got enough to worry about getting well without having to
    sit there wondering about your doctor besides.  
    
    If more of us started demanding reasonably human and sympathetic
    treatment from our doctors, the medical profession would have to
    change. 
    
    --bonnie

    Hi,
    
    	My husband was diagnosed with Epstein Barr Virus this past
    February.  He had been under quite a bit of pressure since last
    August (1987) and had begun to feel progessively more tired as
    the time went on.  This past February he became so exhausted that
    he couldn't work.  He had blood work done and had two doctors
    read the results.  The medical doctor said he had the virus and
    there was nothing my husband could do except rest.  The other doctor,
    a chiropractor and natureopathic doctor, agreed that my husband
    had the virus, but told him the immune system could be built up
    to better fight the virus through nutritional supplements.  My husband
    has been taking supplements according to a program specifically designed
    for EBV (by Seroyal- supplement company) for about 2 months now,
    and he's feeling pretty much back to normal and will be returning
    to work within the next week or so.  He's going to be retested 
    sometime in June to see if he needs to continue on the special
    supplement program.
    	The doctor who's treating him is Dr. Robert Berube.  He's
    director of the Merrimack Valley Integral Health Center in Hudson,N.H..
    The phone number is 603-882-3022.
    
    	
		Sheryl