Aa
High ANA and Epstein Barr?
Hello,
Does anyone know if a high ANA (antinuclear antibody) can have anything to do with Epstein Barr? Thank you
Does anyone know if a high ANA (antinuclear antibody) can have anything to do with Epstein Barr? Thank you
EBV is the virus that causes mono, but it's not called mono when it's chronic EBV (they used to call it chronic mono though, but now it's just chronic EBV). My doc assures me it's not contagious, and it's a different thing than the common mono, which most people get, then work up immunities to, i think, it's a herpes like chicken pox. I'm watching all the kids in my family like a hawk though with all of this stuff!!
I tested positive with very high titers for EBV at age of 20. I was extremely ill for months, but managed to recover and move on with life...for a while. After several more years of a multitude of symptoms, I was diagnosed with Lupus at the age of 28 - a positive ANA part of the diagnosis. My rheumatologist believes that my bout with EBV years earlier may have been the "trigger" for my Lupus. I did not have an ANA test while sick with EBV, but this may be a very interesting correlation. I've always wondered if they could be related.
Best of Luck to you. Hang in there.
Karen
Best of Luck to you. Hang in there.
Karen
Thanks for the reply. Can you tell me what symptoms you were having that prompted you to go to the doctor when they found out that you had Lupus? I have a bunch of things going on right now, it's pretty horrible. I haven't been able to drive for 4 months and I'm just finally getting some answers. How do you feel now? Have your symptoms gone away? Thanks
Here are the symptoms in the order they occurred:
1) excruciating chest pain: doctor first diagnosed a muscle pull. (6 years before dx) It ended up being pericarditis.
2) Achy all over body.
3) 99-101 fever, EVERY SINGLE DAY FOR MONTHS.
4) rash and hundreds of bruises all over legs - "you must be rubbing your achy legs which causes all those bruises" the neighborhood urgent care doctor told me (6 years before dx). Ended up being low platelets, ptp.
5) extreme fatigue! That started with the EBV, improved for a while, but as I look back I always had some level of abnormal fatigue even after the EBV subsided. By the time I went back to the doctor I was a young mother of two and doctor figured I "must have some sort of viral thing or am just very tired from being a mom")
6) Went to another doctor because the bruises were hideous, my legs covered with them. I lived in San Diego at the time and wore shorts every day. People would stare, I'm sure assuming my husband beat me. This doctor was quite certain "you could have leukemia". So, for the next couple of days as I waited for the blood work to come back I laid out a plan to make "dying" videotapes for my kids to watch at certain points of their lives so they'd never forget me. I was soooooo scared. Obviously, and fortunately, the tests were negative.
7) At this point I was hopeless. I was young and still thought doctors were gods. I wasn't going to pursue anything more until my mother-in-law in Florida said my symptoms were eerily familiar to her (she and 4 of her sisters have lupus - 3 mild, 1 sister died from complications caused by years of taking steriods). She told me to "march back to that doctor and tell him to give you an ANA test!". Of course, the good old doc told me he would give me the test, but was sure it wasn't going to come back positive. Well, it did come back positive, and he referred me to a rheumatologist. I could tell he felt quite idiotic.
I have been very lucky in that I don't have any major organ complications. I took Plaquenil for a few years, but steriods only a couple of times for brief stints. I do, however, have very strange things that happen to me which docs always blame on the Lupus. I tend to hemmorhage after surgeries. Not during, but days after. I have strange nerve problems, arthritis, hiatal hernia, spurts of body achiness, fatigue, lots of drug allergies (my body likes to attack virtually anything that enters it)...
For the past 14 years I have had my blood drawn every 3-6 months. The following are my usual results: low white blood cells, 2+- 3+ blood in urine, low C4 complement, normal kidney function, high lymph, high mono, slightly elevated liver enzymes just a couple of times. I've had extremely elevated thyroid antibodies (910, where normal is <35). What's interesting is that the T3 & T4 tests for thyroid diseases always come out negative. Doctor said eventually I will have some sort of thyroid disease, but so far, so good.
It sounds like I'm a mess, but I actually live a very active life (my boys are now 14 & 17). I'm a school district administrator and involved in many activities. It is so important that you find a good rheumatologist & be your own advocate. A must have is "The Lupus Book" by Dr. Daniel Wallace. Of course I purchased this book years ago and perhaps there's something more recent that is very good. But, I have looked at that book thousands of times to check for something I may be experiencing. It won't scare you, just make you more educated on what's going on with your body.
About the symptoms going away...Lupus, as well as other autoimmune disorders, is a strange puppy. The symptoms vary wildly throughout the years (& from person to person). Something new all the time. It's true some are chronic such as the achiness and fatigue. But none of your symptoms should ever be blown off because it could just be a manifestation of the Lupus. You need to take every symptom seriously and educate yourself. Don't let it take over your life - that would be very depressing. One frustration I've had to learn to deal with over the years is that people can't "see" when lupus sufferers are hurting. "Oh, you look fine" is what they'll say. I heard this for years when I showed up to work day after day with 100 degree fever. I tried to tell people it's like having the flu every single day. But now I just don't say much. When people find out I have Lupus now they are shocked. I just don't let it overtake my life.
I'm sorry this is so long, but I know how I felt when first diagnosed. I wanted to hear others' stories. Not very many people, including me, had computers when I was diagnosed in 1994. A couple of years later I remember looking at my first lupus online forum and sitting there crying because it felt so good to not be alone with this monster, that there were others who truly understood what I was going through.
What sort of symptoms are you experiencing?
Karen
1) excruciating chest pain: doctor first diagnosed a muscle pull. (6 years before dx) It ended up being pericarditis.
2) Achy all over body.
3) 99-101 fever, EVERY SINGLE DAY FOR MONTHS.
4) rash and hundreds of bruises all over legs - "you must be rubbing your achy legs which causes all those bruises" the neighborhood urgent care doctor told me (6 years before dx). Ended up being low platelets, ptp.
5) extreme fatigue! That started with the EBV, improved for a while, but as I look back I always had some level of abnormal fatigue even after the EBV subsided. By the time I went back to the doctor I was a young mother of two and doctor figured I "must have some sort of viral thing or am just very tired from being a mom")
6) Went to another doctor because the bruises were hideous, my legs covered with them. I lived in San Diego at the time and wore shorts every day. People would stare, I'm sure assuming my husband beat me. This doctor was quite certain "you could have leukemia". So, for the next couple of days as I waited for the blood work to come back I laid out a plan to make "dying" videotapes for my kids to watch at certain points of their lives so they'd never forget me. I was soooooo scared. Obviously, and fortunately, the tests were negative.
7) At this point I was hopeless. I was young and still thought doctors were gods. I wasn't going to pursue anything more until my mother-in-law in Florida said my symptoms were eerily familiar to her (she and 4 of her sisters have lupus - 3 mild, 1 sister died from complications caused by years of taking steriods). She told me to "march back to that doctor and tell him to give you an ANA test!". Of course, the good old doc told me he would give me the test, but was sure it wasn't going to come back positive. Well, it did come back positive, and he referred me to a rheumatologist. I could tell he felt quite idiotic.
I have been very lucky in that I don't have any major organ complications. I took Plaquenil for a few years, but steriods only a couple of times for brief stints. I do, however, have very strange things that happen to me which docs always blame on the Lupus. I tend to hemmorhage after surgeries. Not during, but days after. I have strange nerve problems, arthritis, hiatal hernia, spurts of body achiness, fatigue, lots of drug allergies (my body likes to attack virtually anything that enters it)...
For the past 14 years I have had my blood drawn every 3-6 months. The following are my usual results: low white blood cells, 2+- 3+ blood in urine, low C4 complement, normal kidney function, high lymph, high mono, slightly elevated liver enzymes just a couple of times. I've had extremely elevated thyroid antibodies (910, where normal is <35). What's interesting is that the T3 & T4 tests for thyroid diseases always come out negative. Doctor said eventually I will have some sort of thyroid disease, but so far, so good.
It sounds like I'm a mess, but I actually live a very active life (my boys are now 14 & 17). I'm a school district administrator and involved in many activities. It is so important that you find a good rheumatologist & be your own advocate. A must have is "The Lupus Book" by Dr. Daniel Wallace. Of course I purchased this book years ago and perhaps there's something more recent that is very good. But, I have looked at that book thousands of times to check for something I may be experiencing. It won't scare you, just make you more educated on what's going on with your body.
About the symptoms going away...Lupus, as well as other autoimmune disorders, is a strange puppy. The symptoms vary wildly throughout the years (& from person to person). Something new all the time. It's true some are chronic such as the achiness and fatigue. But none of your symptoms should ever be blown off because it could just be a manifestation of the Lupus. You need to take every symptom seriously and educate yourself. Don't let it take over your life - that would be very depressing. One frustration I've had to learn to deal with over the years is that people can't "see" when lupus sufferers are hurting. "Oh, you look fine" is what they'll say. I heard this for years when I showed up to work day after day with 100 degree fever. I tried to tell people it's like having the flu every single day. But now I just don't say much. When people find out I have Lupus now they are shocked. I just don't let it overtake my life.
I'm sorry this is so long, but I know how I felt when first diagnosed. I wanted to hear others' stories. Not very many people, including me, had computers when I was diagnosed in 1994. A couple of years later I remember looking at my first lupus online forum and sitting there crying because it felt so good to not be alone with this monster, that there were others who truly understood what I was going through.
What sort of symptoms are you experiencing?
Karen
I got a little emotional reading your post. It is nice to have the internet, I can't imagine what I would be doing or thinking if I didn't have this ability to communicate with others who have this. My symptoms are dizziness, so bad I haven't driven in 4 months. I have weakness in my legs, iritis, blurry vision, tingling & numbness in my legs and arms. I wake up all through the night with my arms and legs going numb. It's really frightening. I'm so fatigued, I go from the couch to the bed. I can barely shower or feed myself. And just 4 months ago I was shopping, going to dinner and movies. I really don't understand this disease but my blood work looks like Lupus. I can't remeber anything and I'm so disoriented. My feet swell, turn red and itch. My face gets flushed, I am anemic, I have had loose stools for 4 months, ringing in my ears and my temperature goes from 97-101. I get real shaky and I have an internal tremor that is really disturbing. I have real bad insomnia and my swallowing is bad. And lastly my muscles twitch and jerk.
I will look for The Lupus Book and buy it, maybe I'll check Ebay. I am very frightened by this, every day I feel like I'm going to die. I wake up each day feeling worse than the last day. Sometimes I can't believe it's possible to feel worse but I usually do. Almost every day I wake up and think...this is it...today is the day my body is going to shut down....and then I live another day. I feel so horrible all the time. Hopefully with treatment some of my symptoms will go away. Are you still on Plaquenil? Thanks for the reply. I really appreciated it, it helps so much mentally.
I will look for The Lupus Book and buy it, maybe I'll check Ebay. I am very frightened by this, every day I feel like I'm going to die. I wake up each day feeling worse than the last day. Sometimes I can't believe it's possible to feel worse but I usually do. Almost every day I wake up and think...this is it...today is the day my body is going to shut down....and then I live another day. I feel so horrible all the time. Hopefully with treatment some of my symptoms will go away. Are you still on Plaquenil? Thanks for the reply. I really appreciated it, it helps so much mentally.
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