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Thread: Epstein Barr/Lupus connection...?

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    Question Epstein Barr/Lupus connection...?

    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?

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    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
    Mari

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    ~Winston Churchill~







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    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

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    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.

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    Quote Originally Posted by magistramarla View Post
    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
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

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    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

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    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

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    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

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    Quote Originally Posted by MelanelloPea View Post
    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

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    Hey Rob what is your opinion on these pain easing Tens machines?
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

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