Hey, there. I was told by one of the many idiots I went to for "healthcare" while working my way to a Lupus diagnosis, that my blood test results showed that I had had Epstein Bar, but did not at present have it.
I have an acquaintance who also has Lupus who was told the same thing: i.e., she had Epstein Bar virus at one time, but not at present.
Anyone else? And does anyone have a better understanding of EB? Any theories about its possible relationship to Lupus?
Hi there
My son Fin was tested for EBV because his symptoms could have linked to this virus. His mono spot came back negative.
It can hang about for ages and it can actually trigger an autoimmune reaction apparently. Thats not to say it definitely has caused your lupus but it is a school of thought.
Best wishes and long remissions in your lupus journey x
I don't know if this us too medical for you:
medscape.com/viewarticle/78...
You may have to register to read Medscape - but it is free. Page 3 deals with EBV and SLE and some parts are not too difficult to read.
It is not unusual for an adult to have had Epsein Barr virus - 85-95% of the population do. But they have found much larger amounts of virus in patients with SLE.
I had a virus of some sort 3 years ago, 3 trips to the ER and was seen by infectious disease Doctor without conclusive results. I had high fever, swollen red legs with a rash, thought I was dying! Finally I contacted My rheumatologist to see his thoughts if it was my lupus(diagnosed2011) causing this reaction. I was afraid that the ibruprophen I was taking for the fever was interacting with the methotrexate I was taking at the time. He ran some blood work and found the EBV, (I probably had it somewhere in my younger years). He said it is not uncommon for lupus patients to get secondary infections that were already present, as with those who don't have SLE, they might encounter the virus only once in their life and build immunity.The severity of an EBV outbreak varies greatly! I work with children, so virus are forever present. I believe The EBV VIRUS is what teenagers have with mono. Hope this helps and "Google" the EBV diet/medical medium.....for more info!
Hi, I went to The Lupus information day at Nottingham, and one of the presentations mentioned Epstein Barr, apparently we are all born with this, but it lays dormant in most people. Have a chat to your GP maybe he can explain it more x
I feel extremely sad for you "clarawalker" that you have nothing better to do in your life than to make these ridiculous posts. Trying to upset the people on this site who have more intelligence than you do, to believe your posts. I can imagine what your mother thinks of you. I pity you.
Hi NeseVee ,
Dr Ian Todd gave an excellent presentation at our Lupus Information Day in Nottingham on Saturday and discussed the possible link between EBV and autoimmune diseases in some detail. We will be uploading a video of his talks when we are able - they will be available on our website and YouTube channel. You may want to give it a watch.
Hi NeseVee ,
Dr Ian Todd actually spotted this conversation after visiting our website and has very kindly written the following for you, whilst we wait for the video of his presentation to be made available.
“Epstein Barr virus (EBV) is a member of the herpes family of viruses and, as such, is related to the Herpes simplex virus (which causes cold sores) and Herpes zoster virus (also known as Varicella) that causes chickenpox and shingles. All of these herpes viruses remain in the body for life once infection has occurred, but usually are kept under control by the body’s immune system and remain in what is called a ‘latent state’ in which they hide away inside some of our cells, only occasionally re-emerging to produce new copies of themselves.That’s why once someone has had a cold sore, there’s a chance they will get cold sores again if they get stressed or too much sun on their lips and the Herpes simplex virus re-emerges; and why some one who had chickenpox as a child may develop shingles later on in life if the Herpes zoster virus re-emerges. In the case of EBV, many people become infected with this as children and this infection often has no symptoms, so they won’t even know that they have acquired the virus. If people have their first infection with EBV when they are in their late adolescence or are young adults, this is when EBV infection often presents as glandular fever (the proper name for this is infectious mononucleosis). EBV is most readily passed from one person to another in saliva, hence why glandular fever is sometimes called ‘kissing disease’! By full adulthood, over 90% of people are infected with EBV – so it’s much more usual to have EBV than not to have it, in the general population. Like all viruses, EBV survives in our bodies by infecting particular cells. Different types of viruses infect different cell types (which is partly why they can cause different diseases): EBV infects B lymphocytes (often just called B cells), which is one of the main types of white cells in our immune system, and a cell type that plays a particularly important role in lupus. In most people, EBV remains latent (i.e.hidden) inside B cells in our bodies and, if it tries to re-emerge, our immune system rapidly stops it reproducing and shuts its down again, but we can never completely get rid of this virus. There is, however, quite strong and increasing scientific evidence that EBV is implicated in triggering and/or causing relapses, in some autoimmune diseases, including lupus. Exactly how EBV could contribute to lupus isn’t fully understood but it might, for example, trigger exaggerated production of a molecule called interferon-alpha (IFN-a), which is found at unusually high levels in the blood of many lupus patients. IFN-a is normally a good thing for the body to make because it helps in the fight against viruses; in fact, it’s name comes from its ability to ‘interfere' with (i.e.block) the replication of viruses in the cells that they infect. However, it’s possible that the high levels of IFN-a produced in lupus may help to drive the autoimmune, tissue damaging, response. There are other ways that EBV might contribute to lupus and, indeed, other autoimmune diseases. There is currently no vaccine to protect us against EBV, but scientists are currently working on developing such a vaccine.”
Hi NeseVee,
I had the same history. The doctor told me that EB has activated lupus.
Best wishes and remission
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