I have high epstein-barr and ANA, and they are both indicative of autoimmune disorder. The high epstein-barr, can be used to support the diagnosis of Chronic Fatigue Syndrome, specifically. I have no idea if these interact, I just know that my doc says it's all part of the common pattern. Not much help, good luck to you!
Hey I just replied to you in another thread ! = ) Yes, a high ANA can be due to CFIDS. I have a very high ANA (1:640 - speckled pattern) and have CFIDS. Per Dr. David Bell --- up to 25% of CFIDS patients have a positive ANA titer.
Isn't epstein barr the same thing as Mono. My now 5 year old had a very wierd illness last year his face was swollen and he had a rash around his neck, I am not kidding it looked like someone tried to hang him (that is what the rash around his neck loked like) they thought it was mono, so they sent for a titer for epstein barr virus, he alrasdy had mono must have been when he was 2. just wondering.
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.
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.
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.
You point out several symptoms that I also experience - blurry vision, loose stools (for over 3 years now, although I just recently had my gallbladder and appendix out and doc said the chronic diarrhea should subside within 6 months). I do get occasional mild numbness in arms and legs, but never close to the level you are experiencing. I definitely have bouts of brain fog (problems comprehending, remembering, focusing, etc.), especially during flare-ups.
Now I don't pretend to be a doctor, just someone who enjoys medical research. But when reading about your combination of symptoms I see some possible symptoms of MS. The numbness, muscle twitches, blurry vision, etc. Did the doc test you for that?
I feel so horrible with what you're going through right now. I remember waking up daily and feeling as though I was going to die. What you are experiencing is so very, very scary. Some flare-ups may last for months, others not so long.
Hang in there. I have to say that as each year goes by I am feeling sooooo much better. With each blood draw I am getting back more and more normal results. As I look back, it's hard for me to believe what I went through. But, you know, I got through the tough times. BE AN ADVOCATE for yourself. Listen to your body.
Do some research (start at http://lupus.webmd.com/guide/lupus-overview-facts) to learn the basics. Ask your doctor lots of questions. There are questions on the website for you to ask. Ask about MS.
I hope you have a strong support group at home with family and/or friends. What is your age? Do you have children?
I went to a neuro and he did a few MRIs, they all came back ok so he sent me out the door. Told me to breathe into a paper bag when I feel bad. LOL Yeah that cures Lupus! So I went to another neuro and he said that it looked like there wasn't anything else he could do or no other tests he could run. I asked him about nerve tests and he said there was no reason to do that. The doctors drive me crazy. I'm 37, I'll be 38 soon. And no children, thank God. If I did I can't imagine taking care of them. I can't take care of myself. I will check out the link you gave me about Lupus and do some research. Thanks for all the info, it helps so much knowing I'm not alone and there is hope.
I just read your story and you have a few of my symptoms.I have been sick for fourteen years with disabling symptoms.Blurred vision,well actually double vision,heart palpatations,sweats,chills like i have a flu every day,i do have an elevated Ana.I have been diagnosed with shjogems syndrome,IGAnephropathy,and hyper joint disease and i feel like my body is attacking me,including the food i eat.good luck. rose227
Your posts are so interesting. As a 46-year old woman diagnosed with Sjogren's, I've had so many other symptoms that don't fit the classic Sjogren's. I often wonder if I have Lupus. An oncologist I saw (to rule out lymphoma since I have enlarged lymph nodes all over) told me perhaps I have mixed connective tissue disease. I guess that is the name they give to people like me with so many varied symptoms, but don't fit all the criteria for just one autoimmune disease.
I was diagnosed with lupus 4 years ago the only symptoms I had were swelling of the fingers, I was put on Plaquenil and 8 months later I got the butterfly rash and my joints started to hurt got of the Plaquenil and within a week the rash was gone and so was the pain, I was then put on Methitrexate and that didn't seem to do anything for me but make me tired alot. I have since did a stool sample and flushed the bad bacteria from my stomach and have been feeling pretty good but my inflammation levels are still real high and my ANA levels are high. Does anyone know if there is anything else that could cause a high ANA reading.
Sorry to hear what you are going through. I wish we could get some answers. My ANA is high too and no one can tell me why or why I feel so bad. If I find anything out I'll be sure to post. It's going on 5 months for me with no answers.
25% of CFS patients have a positive ANA (myself included) and 29% of fibromyalgia patients have a positive ANA as well. This is what David Moskowitz, M.D. (Harvard Graduate) has to say:
"We have encountered two patients with Fibromyalgia initially diagnosed as having Autoimmune Fatigue Syndrome (AIFS). To investigate the relationship between AIFS and Fibromyalgia, the distribution of the tender points in patients with AIFS was assessed according to the ACR criteria for Fibromyalgia. It was revealed that AIFS patients had 5.6 tender points on average. Patients with headaches, digestive problems, or difficulty going to school had more tender points than patients without. Patients with ana titers or = 1:160. Anti-sa negative patients had more tender points than positive patients."
"These results suggest a relationship between AIFS and Fibromyalgia in terms of the pathophysiologic mechanisms of the numerous tender points. In other words, ana-positive Fibromyalgia patients could be one form of AIFS, as well as ana-positive Chronic Fatigue Syndrome patients. Thus, autoimmunity could explain the controversial disease entities of Fibromyalgia and/or Chronic Fatigue Syndrome."
>Yes, a high ANA can be due to CFIDS. I have a very high ANA (1:640 - speckled pattern).
Plateletgal, My daughter has 1:640 speckled pattern ANA and has Lupus SLE. She also has Hashimoto's.
Shirl. Have you been tested for thyroid disease also? All your symptoms could be thyroid related. Make sure you get a copy of the results and check them out for yourself. Many labs still use the old range. New TSH range is 0.3-3.0!! Don't let them say normal and file your report. Get copies.
I have the same ANA titer as your daughter... also the same pattern (speckled), but I have CFIDS. Of course CFIDS can go along with some autoimmune conditions. It's basically all the same stuff... Th1 inflammatory diseases.
I know they tested my thyroid but I don't know what the results were. I'll take a look back at my bloodwork. My ANA is high, but 2 times I had a Anti-SM come back positive, now it's negative. I'm so confused and so are my doctors.
I have similar sympoms and was diagnosed with Celiac Disease. A gluten free diet helped me for a while but back to feeling bad. I seem to notice a pattern of what may be "flare-ups". It begins with the butterfly rash on my face (only on one side though) and on chin. Breathing problems, internal tremor, etc. I am being sent for ANA blood work. During this time I get pain in my kidney area (left flank). I have also tested positive for past EBV infection. I am also a nursing student and have tested positive for Tuberculosis, on both PPD tests, although the xrays of my chest are clear. I have read that there is a link between Celiac and Lupus. Just wanted to share this to see if any of you have ever considered Celiac. Good luck and please share your insights about this with me. Thanks!
Thank you for your post about your survival. I also have worked in the field of educaiton and am having a hard time figuring how to work with 3 months straight of 100 degree fevers? What have you found that works for you? I want to stay in the field but I've had so many bad experiences working, and gettig sick with high profile jobs that now I'm thinking to just work on my own. Please any advice, especially with the fevers, grr.
I'm a 46yr old female that had EBV in 1992 that attacked my liver and spleen. I was jaundiced and anemic. Took me 6mos-1yr to recover. Had a bone marrow biopsy to rule out lymphoma. Fast forward to now, I have metabolic syndrome, thyroid problems and type II diabetes after gestational diabetes with my now 3yr old son, had him at age 42. Doctors are telling me I simply have fatty liver disease because I'm fat. I finally found a GI doc who would listen to me that I had liver problems in 92 and was young, thin and healthy!! My ANA test came back positive with a speckled pattern. He's talking about autoimmune hepatitis or RA to explain my overall joint pain and fatigue. My SMA was negative so am I in the clear for a lupus diagnosis?? Thanks, Mary
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