Epstein - Barre virus and auto - immu... - My MSAA Community

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Epstein - Barre virus and auto - immune disease

Good_enough profile image
β€’36 Replies

I had Mononucleosis at age 12. I understand that epstein Barre virus is associated with mono. I think maybe the virus is also associated with MS. Any thoughts?

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Good_enough profile image
Good_enough
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36 Replies
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WAshingtongirl profile image
WAshingtongirl

I had mono when I was 14. I've heard about the possible connection over the years. Wouldn't it be wonderful if they could pin down what MS really is? What triggers it. How to stop and maybe reverse it. How to prevent it...

jimeka profile image
jimeka

I had mono as you call it when I was 14. It's called glandular fever over here in the uk. My eldest sister had it so bad she ended up in hospital with suspected diphtheria. She had it for 6 months, then my younger sister got it, for 3 months, followed by my brother for 1 month and then eventually I had it for 2 weeks. All of my 3 children have had it, my youngest son had 6 months off school, and my daughter had it for a year, it was awful. Apparently depending on the severity of it, it can contribute to other illnesses.

dmaskal1 profile image
dmaskal1

I never had mono but I have MS.

Good_enough profile image
Good_enoughβ€’ in reply todmaskal1

I don't really "like" that you have MS

SO not everyone with MS has a link to Epstein Barre virus.? Perhaps there are other predisposition for autoimmune responses.

You are all probably thinking that that's an understatement

dmaskal1 profile image
dmaskal1β€’ in reply toGood_enough

Don't worry. :) I know you didn't mean you liked that I have MS. You just liked the fact I replied. I figured you were just trying to gauge how many of us MSers had MONO so I replied.

I was diagnosed 31 years ago and, since I was a Research Scientist working at a pharmaceutical company back then, I've been looking for the cause of MS for that long .

I do wager that someone will figure it out eventually since there are so many people working to answer that question.

In the mean time I try to stay abreast of the available treatments for MS. I am also always monitoring the research regarding remyelination of neurons that have been demyelinated by MS. That I hope is just around the corner based on the scientific literature I have been following.

Best wishes. Dave (dmaskal1)

erash profile image
erashβ€’ in reply todmaskal1

dmaskal1 do you think it's epigenetics: we have a predisposition for ms and something like a virus (EBV) turns on that predisposition?

Example: not all smokers get lung cancer but perhaps those with a predisposition (the genetic code) for lung cancer have that code switched on by tobacco use.

Granted, my mother has lung cancer and never smoked.

And I had Mono (EBV) @ age 14. The kissing disease and I had just played spin the bottle. Talk about pre-teen guilt! 😳

Good_enough profile image
Good_enoughβ€’ in reply toerash

Never heard the term epigenetics. I also think genetics are part of the predisposition . I'll look that term/meaning up, thanks erash😊

WAshingtongirl profile image
WAshingtongirlβ€’ in reply toerash

So very sorry to hear about your mom, Erash.

erash profile image
erashβ€’ in reply toWAshingtongirl

Thank you she and my dad both have lung cancer. Dads controlled with radiation, mom is on chemo and hanging in there. Why I am cherishing this visit! 😍

WAshingtongirl profile image
WAshingtongirlβ€’ in reply toerash

Cherish your time together πŸ’ž

Jesmcd2 profile image
Jesmcd2CommunityAmbassadorβ€’ in reply toerash

I'm so sorry to hear that erash Enjoy your holiday β™‘ ~Hugs~

jackiesj profile image
jackiesjβ€’ in reply toerash

oh my, def thinking of you all..

WonderMom profile image
WonderMomβ€’ in reply toerash

Erase,

Get rid of that " pre-teen guilt"! Mono was termed the " kissing disease " when I was diagnosed too.

Medical Science has grown leap years in its understanding of immunology. It no longer recognizes that term " kissing disease".

Mono( Epstein Barr virus) is just a virus just like cold,flu,tummy bug.

For all you know you could have been infected with mono days after you played "spin the bottle".

Give your self a break on that. πŸ˜‰

WonderMom profile image
WonderMomβ€’ in reply toWonderMom

Sorry erash, spell check changed your name.😞

WonderMom profile image
WonderMomβ€’ in reply todmaskal1

Hi Dmaskal1,

You maybe interested in checking out the relatively new research on the connection btw our "guts immune system " and Ms. Research is now terming our "gut as our second brain" that has a key role in directing the immune system. And it's correlation and mediation on MS.

Happy researching! πŸ™‚

dmaskal1 profile image
dmaskal1β€’ in reply toWonderMom

Thanks. I've read some of those research articles regarding how our immune system and our gut are closely connected.

Dave

AngieRowe profile image
AngieRowe

I read that about 90% of people with MS would test positive with Epstein Barr. I was curious to see so I was tested and did test positive for having had it in the past but I was never aware of having it.

erash profile image
erashβ€’ in reply toAngieRowe

Most of the population has been exposed and tests positive.

Good_enough profile image
Good_enoughβ€’ in reply toerash

Wonder if most of the most of the population has an autoimmune disease?

erash profile image
erashβ€’ in reply toGood_enough

Good_enough given the number of bio logics (look at generic names meds end in mab) now on the market, you would think everyone had an autoimmune disease

plosed06 profile image
plosed06

I had mono when I was 19. Got uveitis shortly after that. But did not get MS until 35 years later.

Judi4 profile image
Judi4

Over the years I've had certain conditions and viruses. My grandfather died of TB which I tested positive for. Every time my mother or I would ask the doctors what causes this, we were told that sometimes our bodies have an infection and it comes out through other ways. I don't know if this is true, I think doctors sometimes just don't know the answer.

erash profile image
erashβ€’ in reply toJudi4

Judi4 most of the time...that's why it's the "practice" of medicine. And those darn patients never follow the textbooks!

Jesmcd2 profile image
Jesmcd2CommunityAmbassadorβ€’ in reply toerash

Lolol that made me laugh, thank you erash . I need that today :)

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

I had mono at 17 was out of school for 3 months, and had permission to fall asleep in class for another 3 mos lol. But l also caught bronchitis at the same time :(

Morllyn profile image
Morllyn

Back in the 70's, I believe, they thought there was an association between mono and MS, I haven't heard any more on that though. I had mono not long before my first symptoms started.

Interesting. I had mono not long after child #3 was born. I'm not sure that it ever really went away. Months later I had the same symptoms, but worse and was again diagnosed with mono.

Following up with many doctors since, some said you absolutely cannot get mono more than once, but that you would always test positive for the EBV. Other docs were of the mind that you indeed can get mono more than once.

Fast forward 30 some years . . . MS diagnosis.

erash profile image
erashβ€’ in reply to

Hidden i was taught only once, can test + long after that though

Jesmcd2 profile image
Jesmcd2CommunityAmbassadorβ€’ in reply to

Hidden l was told you can only get mono once?.

tnolan2006 profile image
tnolan2006

There was a study of military people that shows a strong association with getting EBV later in life and getting MS. Here's a summary of the study:

multiple-sclerosis-research...

Here's more:

multiple-sclerosis-research...

It could also be other herpes viruses, and the EBV doesn't have to give you mono, I only had rashes.

WonderMom profile image
WonderMom

Hi good enough,

I too had a severe case of Mono @age 14. I was hospitalized for 2-3 weeks and missed 3 months of school .

As a nurse, I knew that certain viruses leave behind their "code" which lies dormant in our body after the infection has cleared. The code can then be activated later in life and cause a new disease. I.e. Chicken pox and Shinglles. Doing research I found an alarming amount of MS patients had been infected with MS btw ages 12-18. Coincidence?, I thought not!

I pushed this theory to multiple neurologist who denied the connection. Fast forward 5 years and Medical research confirms Mono(Epstein Barr virus) is a risk factor for later development of MS. Just as Chicken pox puts you at risk for later development of Shinglles.

Bottom line, you are absolutely right! You have great instincts. I am learning even more about the disease as my daughter is in college studying to become a medical researcher with a goal of stopping and ultimately preventing MS.

itasara profile image
itasara

I have heard that Mono and other Epstein bar viruses could be related to MS but in itself may not be a cause and as someone else mentioned here not everybody who has MS had mono. Whether all MS patients have Epstein bar virus is probably hard to say.I don't know if there are any studies done about this. I don't think my daughter ever had mono but she was diagnosed with MS before I was and It's possible she has Epstein-Barr virus elsewhere. I did have mono when I was about 20 years old or so. It was well over 40 years ago. I was also diagnosed with another condition at the time, showed up as a skin condition, called erythema nodosum which interestingly someone else brought up on this board. I don't think it was at the same exact time of my mono diagnosis but was in the same year. Now that I think of it is two conditions could be related although Little is known about the exact cause of the skin condition other than it is a precursor for other possible conditions, but now I have two other skin conditions that are possibly auto immune. And my MS diagnosis came 40 years later and the skin conditions later with in the last year or so. I have had MS that I know of for 16 years now.

lightweaving profile image
lightweaving

It is associated with MS.

jackiesj profile image
jackiesj

I also have gone the way of other.I am positive for epstien barr but they also said directly goes with the herpes simplex.Yes on correlations all docs have said but what does that say for treatmeant.Nothing but keep in check.EP also has its fatigue value, flu feelings etc.Virus's can be preventened?I think its a craps shoot.Maybe a trigger?Best wishes on the hunt.

jackiesj profile image
jackiesj

EP here also, no mono...its just there.Runs thru family.....but will keep them!

gaylaortega profile image
gaylaortega

I'm 62 years old. I also had mono when I was about 12 years hold. Very sick. Had to be home-schooled for about 3 months.

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