Question: Epstein-Barr Virus or Mononucleosis ??

[hugabunch]

HELLO to Everyone...... :)

Just wondering how many of you.....who have been dx with Lupus or working on being dx with Lupus.....have had Epstein-Barr (EBV) or MONO in your past.....???

Tell me about it.....What was it like...and When was it...???

***I have heard and even read that there may be some connection with this with later onset of Lupus. What do you think...??? What have you read concerning this issue....???

My Case.......

I was a healthy child...until, I suddenly had a severe case of Mononucleosis at 18 years old (as a senior in high school)...( I am 40 now). In fact, at that time, my blood work was so "crazy" that the Doctor thought I had Leukemia, but after further bloodwork, it turned out to be just a bad case of MONO...or so the doctor said at that time...Thankfully. It took months for me to finally feel better.....

For years...I have had symptoms and positive blood work pointing to Lupus. At this time, I have been diagnosed with UCTD, but the Rheumy feels that it probably is Lupus.

I have not told my current Rheumy about the MONO connection....should I...???

Let me know your thoughts on this Poll.......Thanks a Bunch :D

[Maura]

Hi, :flowers: :flowers: :flowers:

I had it when I was about 16 years old.
It took a while but they said I had mono. I felt really sick.
I strated having my first lupus symptoms at the age of 24.

Maura

[Clare.T]

I haven't had it as far as I know, however it figures in Dr Hughes' Alternative Criteria list ( see top of Not Yet Diagnosed Section).

It's generally accepted that viral diseases can be triggers for lupus but no studies to confirm it and nothing to be done about it anyway.

Every past illness or condition should be mentioned to a doctor as part of diagnosis consultations

Clare :)

[confused1]

I had mono twice during high school -- very bad with high fever and the like. Then during my sophomore year in college I became very ill again and was diagnosed with mono. It recurred two months later and again during the summer. I was hospitalized that time for several days.

Sunny

[weedhopper]

Yes I had it in my teens. Last summer after a weekend spent out in the sun, I became sick and also began having a problem with swollen glands. At that time my GP diagnosed me with a reactivation of the Epstien Barr virus. Every new symptom I had he then atributed to that. It wasn't until after I began seeing a
Rheumy that I found out I DIDN'T have a reactivation of EBV at all, but instead autoimmunity. Interesting pole! ;)

[dahl]

:flowers: I never had MONO but i did catch somethin that triggered this..just not sure what it was. I had family saying over and the kids were sick so i started gettting sick and then i started swelling and pain could get up so tired. I believe that is what trig it for me... :flowers: dahl

[Lily]

I had it after the birth of my second child at age 29. I was ill for over a year with it, at least I had extreme fatigue and no stamina for over a year. I guess if it had been investigated more thoroughly someone might have labelled me as having chronic fatigue at that time.

I did recover but went on to have symptoms of Lupus which had not presented themselves since a bout in my teens. Some 15 years after that I was diagnosed with Lupus and Sjogren's. Many say there is a link to Sjogren's and EBV setting the process n motion. But it could be said of many immune disorders. Some viruses have a long lasting effect in our bodies and alter the immune system. in susceptible people It's probably one of many tings that go into the mix to create autoimmune in some of us.

love
Lily

[chelsearothschild]

I had mono in the second grade. I had it forever!!!! Seriously, I missed 8 weeks of school i think. :rolleyes:

Chelsea

It is an interesting connection........

[childrenrtreasures]

Hello! I had EBV when I was 15 and missed about six weeks of life :P . My dr said my tonsils looked like ground hamburger (sorry to be so descriptive :sick: ). I still have swollen tonsils from it (12 years of having my dentists say WOW, you really have big tonsils!! :rolleyes: ). I still have frequent problems with my glands swelling and my tonsils becoming inflamed. I want to mention too that my spleen was enlarged for quite some time as well but has resolved.

I didn't notice any lingering effects other than that.

Great poll!

Love and Prayers, Kelly

[Hadley]

:wave: I had Mono when I was 20 or 21 and was laid up for a couple of weeks at least. I was going through a time where I had strep throat off and on for two years. During one of these strep throats I had Mono too. My lupus symptoms started presenting themselves around 17. I guess like everything else about this disease nothing is normal or makes sense. :hissy:

[cloey]

I had mono when I was 7...almost failed grade one because of it :(...missed 2 months of school....

[frono]

Never had either one (by the sounds of it, that's a good thing), but I did have bronchitis between 5-7 times every winter and once in a while I would end up with pneumonia and land myself in the hospital. Never had strep until my early 20's but when I got it, it was REALLY bad. I was never aloud to run track in high school because of the bronchitis. Interesting poll!


Frono :)

[hugabunch]

Hey...this is Interesting...!!! :blink:

Thanks for all those who have helped with this poll....!!! Let keep it going......

Have all of you mentioned this MONO connection to your rheumy...??? I have not yet, but plan to do it when I see her in September.

WOW.......

Thanks for the info on ST Thomas Hospital Criteria for Diagnosis of SLE (located at the top of not diagnosed yet...forum) Check it out if you haven't already read it.

After reading the ST Thomas Criteria.....I realize that I have had almost all of those criteria....!!!! I never knew that they were all connected...!!!

How about you.....Have you all had many of these ST Thomas Criteria also...???

[Jirel]

I had 'something' in college. My mono test was not positive but my white blood cell count was up. I went to bed and slept for 20 hours. That was about 30 years ago and I was diagnosised with Lupus a few months ago. I've had fatigue problems but its hard to tell if they were autoimmune or depression (yes I know, they can be linked but I've been treated for depression for a lot longer than autoimmune problems.)

[jerseygirl]

I've never been diagnosed with it, but my mom suspects that I had Epstein Barr when I was in my 20's. I was just tired and achy all the time, I couldn't seem to shake it. Although I didn't know it at the time, I was already having lupus symptoms that I attributed to my non stop lifestyle (nothing bad, just working alot and always on the go). What I have had many times is strep, bronchitis, pneumonia, flu and bronchial infections and sinus infections.

[dalyce]

I had mono when I was in Grade 6 and 8 then twice in university and once each time after having my children ( 3) and twice more since then. Now I've been told that you can get mono only once mono means once. So what did I have then ---lupus flares? Dalyce

[Tanya2]

I have not been dx yet but did have it in grade school took me a year to get over it. It was NASTY.

[jujubean]

Hi!

I had Mono when I was 5 and had to repeat Kindergarten because of it. My mom said I was very sick, hospitalized for 2 weeks, but remained very sick 6 weeks after released. She said even after I felt better I just didn't have any energy and would just get so worn out I couldn't even play. What followed was a childhood full of illness. I was always sick and hospitalized many many times with severe stomach flu. Always had strep and sore throats and swollen glands too. Dr's took out appendix and tonsils just grasping at straws. She took me to many different drs trying to find out why I was always so sick. All they ever told her is that for some reason my immune systom just didn't fight off disease like it was supposed to but noone knew why.

16 years after having mono I was dx'd with CFIDS. Dr took blood work and found + EBV and believed that along with my symptoms indicated CFIDS.

Very good question.

[angelwings]

I was diagnosed with epstien-barr virus when i was 36 .I just started to get tired all of a ssudden,could'nt keep my eyes open.I was driving home from work one day and went to sleep!I didd'nt wreck, but i came close.I think thats when a lot of my symptons started,I just did'nt know that much aabout lupus,so i did'nt put two and two together. :flowers: angelwings

[JulieIL]

Didn't have either of those, to my knowledge, but I did have a horrendous case of chicken pox when I was 18mos old...according to my mother...she would know, she was a nurse forever!

I believe pox is viral, is it not?...anyway, don't mean to add another fork in the flame so to speak, but it may mean any viral attack on the system could be a possible facter in the grand scheme of things :rolleyes:

Bye for now!
Julie

[hugabunch]

Hey JulieIL.

From what I have read, EBV is from the Herpes Zoster family.....I think chicken pox is too...isn't it...??? Some connection there..I would think.

Great answers....!!! :D

[JulieIL]

You're right! Never even thought of that. Makes perfect sense dosen't it?!
Thanks,
Julie

[Evan's Mommy]

I had MONO when I was about 23. Wasn't super sick with it. A nasty fever and a blistering rash on my body is wost I remember being the worst part. Oh yeah, and yet another experience with the miracle cure all of steriods, but I don't recall that it was prednisone they gave me. Kristen :wacko:

[Lily]

Julie and Hugabunch :flowers: Yes I think you have both got the point there. ANY virus has the ability to alter the immune system in susceptible individuals, just how we respond immunologically depends on our own quirks.

Hugabunch well spotted!! I have never made the connection between these before but you're right :)

http://www.emedicine.com/med/byname/herpes-zoster.htm

Very interesting because like Julie I had a horrific case of chcken pox as a young child, I've never had it since. My son had a bad case then got it again when my daughter got it some years later. So the first infection didn't really offer him immunity, that fits because he's more 'normal' if not erring on the side of slightly immunocompromised. My daughter however had a one only horrific case like I did and has some early manifestations of Lupus but holding her own right now. She seems more like me in that she has an immune system in high gear, if not somewhat deranged!

Makes perfect sense to me, see we can brainstorm when we get our heads together and discuss things :D

love
Lily

[anitalew]

I had mono as a teen and then in my 20's. A few years ago I had something doc thought might be mono but wasn't....some other viral thing I suppose don't really remember. I hope this helps.

Lubs
Anita :love:

[flowergarden]

I never had mono, but Parvovirus B-19 seemed to be a trigger for me.

Recently my dad told me he had shingles--after he hugged me. I wanted to scream and run. I didn't. But I won't vouch for the look on my face! :o

Listening to you all, I'm glad I never had mono.

Incidentally, I'm CMV negative, too. Most adults have had the virus.

I live in the Seattle area. It's often cloudy, rainy, and cool. But the last few days have been near 100 degrees. They decided to play some Christmas music on the radio to cool us off!!

It's not working. :wacko:

[mamascan]

Hi Hugabunch,

Very interesting indeed. Yes, I lost 3 months of my life at age 16 due to infectious mono. I was a 188lb teen w/hypoglycemia. Once I was no longer contagious (about 3 wks) I was allowed to return to high school on a part-time basis for the remainder of those 3 months. Bloods were so bad that I had to have draws sometimes 2-3 times each week. At the end of those 3 months I had lost 40 lbs (needed that!), my bloods were permanently changes-elevated WBC's and enlarged RBC's but w/fewer of them, I was told back then that I could never donate blood again. Currently awaiting a recent work up on bloods so I wonder what CBC's are now?
I had a cerebral stroke (not TIA) at age 23, then my general health started to change at age 34-developed allergies I'd never had before, allergic asthma pleurisy etc. I'm not dx'd yet but my dr says I will have positive ANA at some point. I have 9 of the criteria for dx, crazy isn't it?
Sorry if I was so long. Yes mono was mentioned to rheumy w/everything else he just poo-pooed it away.

Michelle

[hugabunch]

THanks to all of your great input on th MONO subject...!!!

LILY-

You know after you discussed the chicken pox...I remembered that i too had a severe case of chiicken pox at age twelve. I was covered....!!!! I have heard that the older you are the worse it is. That was true for me at least.

As I mentioned I also had a severe case of MONO at around 18....had spleen involvement, too.

A Few Questions for you ALL.........

I am not sure if I have had a MONO test sense the age of 18....when I was sick with it. Is that one of the tests for Lupus...??? What is it called...??? Maybe I need to get that test done in Sept when I go to my Rheumy next. Does anyone know about the MONO test...?? Is is for antibodies or what...???

I would appreciate any advice you all could give regarding this test....

[3forme]

Supposedly, you only get any type of virus once. You will supposedly test positive for it for life. Shingles are a "re-activation", in a slightly different manner, of the chicken pox virus.
I never had mono myself. Had a subclinical case of chicken pox. I would believe that mono my be a trigger for alot of people, it is rough on the old spleen! I would also be suspicious that ALOT of docs wrote off teen and early adult symptoms as "mono" when, even though you may have had mono, you also were having lupus symptoms that they didn't recognize. I am so glad that I didn't have mono!
Take care, 3forme

[Lily]

Hugabunch,

I don't know how the testing works over there but in Australia we get two tests, one is for Epstein -Barr virus IgG which will show a past infection and the other is for Epstein -Barr virus IgM which would show a current infection. My results proved I 'd had it in the past which I already knew. My Lupus doc just asked me if I'd had it but a second opinion rheumy actually ran the IgG and IgM tests. I think this was just for his own interest, or to make sure I did not have a current infection to explain my swollen glands and extreme fatigue at the time. Really it's got absolutely nothing to do with investigating Lupus. It's just that some of us do seem to have contracted it at some time or another and some circles believe it can be a trigger for autoimmune. Dr. Hughes in London classes it as an alternative criteria I think or maybe that's so called repeated bouts of it. Can't remember?

As far as I know as someone else mentioned you can only get it once. Any other bouts of extreme fatigue and gland swelling could be related to Chronic Fatigue, or Lupus or anything depending on what labs turn up and other symptoms.

It's interesting to note that this poll is now evening up and there as nearly as many who have had it as opposed to those who haven't. But then how many have been tested for it I wonder? Was it negative or do they just not remember it? I had no idea what was going on when I got it because I only had a sore throat and a headache for a couple of days. It was the drop dead fatigue that sent me to my GP at the time. a test revealed I had a current infection.

As mentioned it can affect the liver, my husband had it and his liver function test was way off for a while, but he also had RA. With me I turned up a very high cholesterol reading which returned to my normal low once the worst was over, but the fatigue and swollen glands continued for well over a year. My Lupus doc remarked that this was probably more a chronic fatigue syndrome after the EBV infection. One thing he did make comment about though was that in some it can certainly change and rearrange the immune system. For me that was true, at least.

love
Lily

[luvwinnie]

I had it at 14. Wouldn't wish it on my worst enemy!

[artist]

I had mono in high school. I had to be sidelined from my volleyball team.

[bluaudra]

I had mono twice in high school. I missed the first month of my 12th grade year. I then got it again that spring. I haven't felt right since. I often wondered if the mono had something to do with it. I've been anemic since my early teens.

[wondergurl]

Yes had it at about age 27. Ended up in emergency department at hospital with liver pain, extremely high fever and incredibly swollen glands.

They did blood work and came to me saying they thought I had a sudden onset of a rare and acute form of leukaemia.

I was admitted to hospital and it wasn't until a few weeks later was diagnosed as having mono!!!! Doc said it was the highest titre he had seen.

:wave:

[kiducation]

I had mono (the kissing disease) in 4th grade after kissing 1 boy. I should have
learned !!!

Scared me to death, my neighbor was a doctor, and everyone kept asking me if
I had kissed a boy - just teasing me. I lied and said "of course not" all the while
thinking thats why I was sick. I missed about 6 weeks of school, and lost about 15 pounds. I have since wanted to get mono just so I could loose 15 pounds.

I had it each year about the same time of year for about 4-5 years. Each year it got a bit milder. My momsays the doctor says it happens some times.

I never had any spleen problems, but I have always supsect the auto immune has to do with the spleen shomehow.

10 years ago, was told I had lupus, then he said no, its just rheumatoid, but I had
wacky ANA numbers. I was just recently diagnosed with lupus at age 40.
After being in remission from RA for 8 years, other than a few mild flares,
one day I got sick like the flu, had a terrible back ache that lasted over a week - was very strange - then a short time later, I landed in the hospital.

interesting poll, I was just thinking about doing this same one the other day,
for the same reason. I cant seem to figure out how to do a poll, last time I tried it, it did not work is there directions somewhere?

Carol

[Lily]

Carol you can make a new poll bye selecting that function on the top right hand side of your page, there's a button there :D

love
Lily

[louise4]

I find this topic very interesting as I have read many articles in the past that have talked about the suspected link between this virsus and autoimmune diseases. I do not know if I have ever had it. I suspect that perhaps I did when I was a freshman in high school as I had a period of time when I was exctremely ill for over two months. I even missed my brother's graduation because I was so ill. My mom never took me to the doctor and I eventually got better. I have since been exposed to many kids with this virsus and not come down with it. I am having a physical tomorrow and am going to ask my physician to test my blood to see if I have. We recently thought that my daughter had it and when her doctor tested her, it was negative and showed that she had already had it. Go figure! I have no idead when that was in her life!

We also were told that you can only contract this once.? My sister and brother both had it in high school(gave it to one another sharing a soda) and were told the same thing. I think I'll ask my doc that one tomorrow also and see what she says on the subject. Hmmm.

Take care all.

Louise

[deNile]

I have never had mono but thought the chicken pox connection was interesting. I had an extremely bad case, to the point they were down my throat when I was 5. I know I had one of my first flares when I was 8, but wasn't diagnosed till 32. One virus I don't see much of on this poll is cytomeglavirus. It is a "mono like disease". It is passed easily and most people catch it as children, likewise most people may not even know they have it. Then there is the unlucky ones who may have it for weeks, as it responds like mono but is not epson barr. I was unlucky enough to catch it while I was pregnant. The interesting thing is since I was pregnant they were running a lot of tests and we can prove my bloodwork wasn't right/I was in a flare first. The cmv may have been worse since my immune system was down, rather than causing the flare. By the way CMV can mutate or cause CF in the unborn. It never crossed the placenta and I gave birth to a beautiful, perfect baby girl. Hamdillallah!

Sherry

[Sean]

Sherry,
Do you know where that link can be found about CMV and CF. I am currently being tested for Cystic Fibrosis (recurrent pneumonia since april - 3 times, 1 positive sweat test, possible link with my pancreatitis, possible link with my diabetes, age 20 though but looking at silent CF (gene mutation)). I have also had previous EBV (EBV Ab to Early (D) Ag. IgG = 2.18 abnormal).
Thanks,
Sean

[deNile]

Sean,
I wish I could tell you more. I know I had links at one point but my baby is now 2 and I don't have a copy of them. I got the feeling that if my cmv did pass the placenta we would know about the CF quickly, then again they were looking for it. It was just one of many possible outcomes, including mental retardation, and progressive hearing loss. I don't know much about CF only enough to pray my child didn't have it. I think there is only a link between CF and cmv when the mother contracts cmv during pregnancy, therefor it messes with the development of the fetus. Any personal infection of cmv wouldn't cause the CF. If you cross link CF and CMV and possibly pregnancy in a search engine you may get more info. Sorry I couldn't be of more help

Oh, I know I had constant ultrasounds to look for calcium deposits in the baby's brain. I don't know if that was related to CF or not. The sad part is I could explain this fully 2 years ago. Just gotta love that lupie brain.

Sherry

[hattycat]

I had EBV (also called Glandular fever or kissing disease) when all this first started. I was first diagnosed with that but after two years when i was getting worse not better my GP sent for futher tests and speacialists and after 3 years I was diagnosed with SLE

[zara]

Interesting thread.

My problems started out as mono.

[RAD1]

Hello,

I had Mono in my late 20's, I am now 54. I have also often wondered if there was some kind of connection with this and sle. My father had Mumps in his mid 30's, I remember that, and in his mid 60's he was dxed with lymphatic lymphoma. I would like to know if any studies have been done concerning these things ??? It seems like alot of people go a very long time suffering with different maladies only to end up with a dx of lupus or something like Dad has.

Ruth

[sue mac]

I had chicken pox bad when I was little and I had glandular fever at 11,in hospital for 3 weeks and off school for almost 3 months. I have had my symptoms as far back as I can remember and now been dx uctd
style_emoticons/<#EMO_DIR#>/flowers.gif Sue mac.

[andi04]

Yep haven't been the same since my ebv and mono i went to a doctor and he tried valtrax but i got tired of swallowing so many pills for it i think it was for the ebv infection anyway...still have some mono symptoms instead of getting the lupus diagnosis i got labeled with chronic mono, but i'm waiting for my second round of bloodwork from the family doc, he believes i have a ctd of some type he's just not sure what kind or how severe yet.

happy new year all..


btw i had mono when i was 28 i'm 32 now....:shrugs: not sure if that makes a difference but I swear i got my first real lupus flare, in the summer of 96 which would have made me I think 21 or 22 I was never the same after that.

andi

[tbunny1]

Wow - I never knew there was a connection. Had really bad mono at age 15, and was hospitalized with it for over a week. Very interesting stuff - thanks for the post

[mamascan1]

Hi,

I originally answered this post in July of '04. Now have somethings to add.
In Jan of 2005 I found out in the fall of 2004 my daughter had had mono and had CVM (cetomegalovirus), which years ago was only associated with AIDS and HIV patients. Her neurologist feels I must have had
it and passed it on to her. However immunologists and viralogists have found that those who come down with it are any immuno-comprimised individual susceptable.
Wow! Huh. Funny how things change isn't it?

Hugs,

Michelle style_emoticons/<#EMO_DIR#>/flowers.gif aka: Mama

[chihuahua]

Hi,

I had Glandular fever (EBV) when i was younger cant remember how old i was. style_emoticons/<#EMO_DIR#>/sick.gif

My glands swelled quite alot then when i was ypunger & now, one of which in the back of my neck has never gone.

Rheumy testing for Lymphadenopathy.

Chihuahua

[DressageRider]

Yep - I've had both! Mono my Junior year in high school - missed 3 weeks of school, and then Epstien Barr in my early 20's. Actually many of my first lupus symptoms were there when I was hopitalized for the EBV - just the rash was missing. It didn't show up until about 9 years ago - after the birth of my daughter.

I also have had problems with endometriosis since about the same time as my EBV. I ended up having a hyst last February - which brought on my current flare - which finally was enough to get a lupus diagnosis, but honestly I've probably had it ever since I was 23 or so - and I'm 41 now.

Janet

[zara]

I found this on www.arthritis.org:

"The researchers found that the patients with lupus had a 40-fold increase in signs of EBV infection compared to the healthy subjects. The people with lupus had a higher frequency of one type of T cell (CD4) but a lower frequency of another type of T cell (CD8). The team concluded that people with lupus have a defect in their ability to control latent EBV infection that probably results from altered T cell responses to the virus."


click here for link to source (http://www.arthritis.org/research/ResearchUpdate/04Jan_Feb/EB.asp)

[weedhopper]

Thanks Zara for the link. style_emoticons/<#EMO_DIR#>/flowers.gif I always find this topic interesting.

[Rose Too]

WOW! Add me to the list! EBV when I was 16 , was off school for about 4 months!

[Cyndi315]

I had mono when I was in high school. It was a bad case and I was sick for many months. Two years ago, when I was 54, I started having terrible joint pain. It was so bad that I finally couldn't get out of bed, and I had no idea what was wrong with me. I thought that I had a terrible flu, and I finally went to the doctor and went on cortisone which helped me feel much better. It took me about a year to feel better and went another year feeling pretty good. Then right after last Thanksgiving, I got the terrible join pain again. My doctor isn't totally sure what is wrong with me as I have no other symptoms, but since my ANA is positive, she suspects either lupus or RA.

Also my sister has mono when she was 16, and that's when all her lupus symptoms started, the joint pain, the rashes, the mouth sores, the stange blood tests that either show leukemia when she is not pregnant and syphlis when she isn't.

Cyndi

[zara]

From Clinical Microbiology Reviews, Jan. 1991, p. 134

Patients with these diseases often have elevated antibody titers to EBV....Rheumatic disease, such as systemic lupus erythematosus and rheumatoid arthritis, and chronic inflammatory disease or lymphoid malignancy, such as angioimmunoblastic lymphadenopathy with dysproteinemia, leukemia, and Hodgkins disease.