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View Full Version : Epstein Barr/Lupus connection...?



Larette
02-01-2012, 09:07 PM
I'm sure people have brought this up a ton and you veterans out there are probably tired of the rotation of old questions from new comers.
But have to ask, and this is why....

My Mom is, I think, a little bit in denial about me having lupus AND she sees this doctor (Naturopathic Doctor)....and telling this doctor about my lupus....and this Dr. is telling my mom about my lupus.
Well, this doctor says she can and has cured lupus because she treats the Epstein Barr virus that she believes causes the body to freak out and cause lupus because the virus has gone improperly eradicated.

Needless to say I got straight PISSED at hearing that phrase "cure lupus". I feel mad at my mom for insisting that this doctor can cure lupus (or at least mostly believes it). Among other things, it makes me feel like what I have and what I am going through is less than it really is. Know what I mean? It's kind of, in a weird way, like being insulted. I don't know if that makes sense.

But, has anyone heard about any connection between the two?

tgal
02-01-2012, 09:17 PM
As you know... There is NO cure for Lupus.

There are studies going on, and have been, that are looking into that. THE EB virus is the virus that causes Mono. We are giving two tests during our bloodwork, 1 shows if we have ever had the mono (EB) virus and the 2nd shows if we CURRENTLY have the active virus.

Back in 2005 they did have some success (in children only) in getting the kids into a remissive type of state and they eventually came out at a deadlock.

So to answer your question... yes, this is something that is being researched (and I personally am researching it for personal reasons) but no, there is nothing that can be done to cure either the EB virus or the Lupus itself. The only cure for EB is time... basically letting the flare or virus wear itself out.

Hope this helped

magistramarla
02-01-2012, 09:25 PM
Mel,
I found this in good old Wikipedia: "Finally, there is evidence that infection with the virus is associated with a higher risk of certain autoimmune diseases, especially dermatomyositis[citation needed], systemic lupus erythematosus,[2][3] rheumatoid arthritis,[3] Sjögren's syndrome,[3] and multiple sclerosis.[4]"

I'm guessing that once the body is infected with this virus and has to fight it off, it must weaken the immune system, so here comes SLE and all of its friends to play, too.
As you well know, there is no cure for Lupus yet, natural or otherwise. It seems to me that even if you can eradicate the virus, the autoimmune diseases would still remain.
I've also read that we can have genetic tendencies toward AI diseases, and that an environmental stress can push us toward seeing the symptoms of the diseases.
I know that my AI symptoms started to get really noticeable when I was under a lot of stress at work, and my beloved mother-in-law passed away.
Perhaps this virus can be the stressful trigger for the AI diseases?

To paraphrase the immortal Dr. McCoy, I'm a Latin teacher, not a scientist, so hopefully someone else will come along who will know more about this.
Hugs,
Marla

Larette
02-01-2012, 09:27 PM
Yes, I'm not one of those to say that there is a cure for lupus.
When I was first getting my testing done, they tested for EB and of course it showed that I have had it (practically everybody has) but didn't have it at the time.
I actually think I can remember having it and it was after the lupus symptoms originally began...but maybe I had had it years before as well.

Anyway, I guess I'm realizing that I'm feeling more hurt from my mom jumping on this doctors bandwagon. I feel let down or something. It makes me feel unsupported. Maybe that's my underlying reason for posting. I'm feeling hurt about it.
I know my mom loves me and she thinks that she's trying to help but its just hurting my feelings.

Anyway, I've already talked to her about it so not really looking for "things to tell her", maybe just looking for validation...I don't know.

tgal
02-01-2012, 09:29 PM
Mel,
I found this in good old Wikipedia: "Finally, there is evidence that infection with the virus is associated with a higher risk of certain autoimmune diseases, especially dermatomyositis[citation needed], systemic lupus erythematosus,[2][3] rheumatoid arthritis,[3] Sjögren's syndrome,[3] and multiple sclerosis.[4]"

I'm guessing that once the body is infected with this virus and has to fight it off, it must weaken the immune system, so here comes SLE and all of its friends to play, too.
As you well know, there is no cure for Lupus yet, natural or otherwise. It seems to me that even if you can eradicate the virus, the autoimmune diseases would still remain.
I've also read that we can have genetic tendencies toward AI diseases, and that an environmental stress can push us toward seeing the symptoms of the diseases.
I know that my AI symptoms started to get really noticeable when I was under a lot of stress at work, and my beloved mother-in-law passed away.
Perhaps this virus can be the stressful trigger for the AI diseases?

To paraphrase the immortal Dr. McCoy, I'm a Latin teacher, not a scientist, so hopefully someone else will come along who will know more about this.
Hugs,
Marla

Yeah.. I read that but one of the other things that is said is that 95% of adults are positive for exposure to EB. I am not knocking this because my daughter has had horrible virus' at least every 5 years (one lasting a year and a half) and this one is EB. I am trying to fit the "EB may be the environmental exposure" with "95% of people have been exposed to it".

While I don't believe the doctor can cure anything (the one Mel asked about) I am very interested in this because I become more convinced daily that my daughter is suffering from this disease and no one sees it

magistramarla
02-01-2012, 09:34 PM
Mari,
Perhaps in her case, it's a chicken or the egg sort of thing. I've known you a while, and I know that you've been seeing AI symptoms in her for a while.
I wonder if the EB virus took advantage of her weakened immune system?
If the virus can be a gateway for AI diseases, perhaps it can work the other way around, too?
Hugs to both of you,
Marla

Larette
02-01-2012, 09:35 PM
Oh, Marla, we posted at the same time and I didn't read yours before I posted.

I think I tend to agree with what you're saying..about the virus possibly being a stressor (I actually mentioned that to my mom). I also read that maybe the link just had to do with SLE sufferers being more suseptable to the EB. I think I started seeing the SLE before the EB came along but after the EB came along the SLE kicked up about bubillion notches. I think my original stressor was an abusive marriage that I escaped from with my daughter and being a single mother. That aught to do it, right ; )

Thanks

magistramarla
02-01-2012, 09:43 PM
Mel,
Like Mari, I've seen a few AI symptoms in my daughters, too. Kayla has long had asthma, kidney and gastro problems. While she was with her abusive ex-boyfriend (unfortunately the father of her son), she was diagnosed with IBS. Once she got away from him, it got better. Now that she is with a very good man who is her fiancee, she is much healthier, except for those days that she has to deal with the jerk - then her IBS flares up.
Bad relationships can definitely be the stressor that makes you sick!
I'm glad that your life is better now.
Hugs,
Marla

rob
02-02-2012, 06:04 AM
Needless to say I got straight PISSED at hearing that phrase "cure lupus". I feel mad at my mom for insisting that this doctor can cure lupus (or at least mostly believes it). Among other things, it makes me feel like what I have and what I am going through is less than it really is. Know what I mean? It's kind of, in a weird way, like being insulted. I don't know if that makes sense.

Hi MelanelloPea,

It does make sense, and you are right to feel insulted.

I go from zero to thoroughly pissed off in nothing flat when I hear some quack, some fraud start flippantly throwing around the term "Lupus Cure". I have been fighting this stupid disease for 8 years now, and it's at times been like a nightmare you can't wake up from. If there was a cure for lupus, I would have crawled on my frakking hands and knees an infinite number of miles to get this cure and take back my life. Everyone else would have too, my mom, all my friends here, and We Have Lupus would not need to be here anymore. There are people who have lost their battle with this disease, people we love very much, and they would still be with us today if there was a cure.

I get up every day and wonder if this will be the day when I turn on the news and hear the headline that real scientists, real immunologists, real researchers have finally cracked the code of this disease, and finally have a cure, a real cure. Hearing con artisits and quacks just flippantly throw around the very thing I wake up in hope of each and every day, makes me angry, really angry.

I'm glad you weren't taken in by this snake oil peddler MelanelloPea, and you have every right to feel insulted. Until the day when real researchers discover a real cure, ANYBODY who says they have a "Lupus Cure", is a liar, and a fraud.

I'll get off the soapbox now.

Rob

Desleywr
02-02-2012, 06:45 AM
Hey Rob what is your opinion on these pain easing Tens machines?

steve.b
02-02-2012, 07:32 AM
Hey Rob what is your opinion on these pain easing Tens machines?

the machinr you can buy....
is a smaller version of what physio centres use.

i was reccommended to try one by my physio at the time.

the one i use offers a trial period, and a refund period.
cheaper ones do not always offer both.

i origonally purchased mine for my wife she has planter faceitus(sp)
but i use it way more than she does.

SBW8
02-02-2012, 11:51 AM
Hey there... just wanted to say I totally get where you are coming from about being upset that your mom has somewhat believed in or sided with this doctor of hers. I think you should probably just give her time to come around a realize that if it were as easy as this doctor is making it sound - EVERYONE would be doing it! My dad used to believe that there is undoubtedly a natural cure to just about everything out there. He has a somewhat of a legitimate reason for thinking this way though... basically 25 years ago he tested "positive" for hepatitis C after he was involved in breaking up a fight between his friends and some strangers and he was punched in the face by a guy who was bleeding and they had blood to blood contact. 25 years later the doctors show that he has been "exposed" to hepatitis C but there is no indication that he actually has it. He seems to believe that through the natural remedies he tried, his body overcame it. I personally think that 25 years ago we did not have the technology that we have today so I am not convinced that they could tell the difference between being exposed and actually having it.

Anyway - that was a long and drawn out way of saying that sometimes people have reason to believe certain things and just need time to realize that what may have worked for others in treatment doesn't mean it will work for you. I believe that you should definitely give any natural supplements that could help you feel better a shot if your established doctors okay them... usually they can't really hurt you. Let your mom see that while maybe it can make you feel slightly better, that it is not a "cure"... I think she will side with you at the end of the day. Most parents do not want to think their children have something incurable, so she is probably just secretly wishing that this would cure you. Heck, there isn't a day that passes that I wish there was a cure... so I can kind of see where she is coming from.

Hang in there and remember that all you have to accomplish is what is in front of you today - even if that means laying in bed all day because you feel crummy... but don't let what others think or say or preach or teach affect your mood. All we have control over is how our minds feel and how we let others affect us... when we give up that power we give up our ability to laugh and enjoy life. I hope this helps :) Oh and P.S. we were given this disease because we are strong enough to handle it while still living life and having a positive impact on the world...

tgal
02-02-2012, 12:04 PM
Hey there... just wanted to say I totally get where you are coming from about being upset that your mom has somewhat believed in or sided with this doctor of hers. I think you should probably just give her time to come around a realize that if it were as easy as this doctor is making it sound - EVERYONE would be doing it! My dad used to believe that there is undoubtedly a natural cure to just about everything out there. He has a somewhat of a legitimate reason for thinking this way though... basically 25 years ago he tested "positive" for hepatitis C after he was involved in breaking up a fight between his friends and some strangers and he was punched in the face by a guy who was bleeding and they had blood to blood contact. 25 years later the doctors show that he has been "exposed" to hepatitis C but there is no indication that he actually has it. He seems to believe that through the natural remedies he tried, his body overcame it. I personally think that 25 years ago we did not have the technology that we have today so I am not convinced that they could tell the difference between being exposed and actually having it.

Anyway - that was a long and drawn out way of saying that sometimes people have reason to believe certain things and just need time to realize that what may have worked for others in treatment doesn't mean it will work for you. I believe that you should definitely give any natural supplements that could help you feel better a shot if your established doctors okay them... usually they can't really hurt you. Let your mom see that while maybe it can make you feel slightly better, that it is not a "cure"... I think she will side with you at the end of the day. Most parents do not want to think their children have something incurable, so she is probably just secretly wishing that this would cure you. Heck, there isn't a day that passes that I wish there was a cure... so I can kind of see where she is coming from.

Hang in there and remember that all you have to accomplish is what is in front of you today - even if that means laying in bed all day because you feel crummy... but don't let what others think or say or preach or teach affect your mood. All we have control over is how our minds feel and how we let others affect us... when we give up that power we give up our ability to laugh and enjoy life. I hope this helps :) Oh and P.S. we were given this disease because we are strong enough to handle it while still living life and having a positive impact on the world...

Let me clarify something. The comment " I believe that you should definitely give any natural supplements that could help you feel better a shot if your established doctors okay them... usually they can't really hurt you." is completely untrue and can lead to major flares and even death. Just because something is natural does not mean that it will mix well with our medicines or even our disease. Sunlight is natural but it harms me greatly. Alfalfa is simply a natural food although even the Lupus Foundation of America tell us not to eat it because it can harm us.

The idea that something natural can't really harm us has caused more than one person to flare and others to die. Talk to your doctor before adding ANY kind of natural remedies.

rob
02-02-2012, 12:41 PM
We have gone round and round here on the subject of so-called natural treatments. The WHL policy on this subject is specific, and clear-

http://forum.wehavelupus.com/showthread.php?11257How-To-Get-Banned-From-WHL

It's every member's responsibility to familiarize themselves with the rules of this forum. I would ask all members to review these rules, and
please abide by them.

Any further advocacy of so called natural treatments, or the posting of links to these products, will result in an infractions being given.

This thread is closed.

Rob