i have a couple questions.. i have been feeing really sick for the past month.. started out with a 102 fever, sore throat, fatigue, loss of appetite etc. Finally the fever went away and my dr ran more blood tests and told me my liver count was really really high. He did an EBV profile nd EVERYTHING came back positive. I had mono back when i was 15 but he is saying that I have acute mono now.. I just don't buy it. I am really confused and wonder whether I could have lupus. I red on the net that a positive EBV profile could suggest lupus, also I should mention, I had an ANA test which came back negative. In fact all my blood tests show that everything is fine except my liver enzymes (which are slowly coming down)
I have been experiencing weird body temps lately, like in the morning my skin will feel normal and my temp will be 97.7 or sometimes even below that and at night my skin feels warmer (especially on my stomach) and my temp will be 98.8. I dont remember thi ever happening before I got sick. Another thing I have noticed was that I got what looks like a rash on my left inner thigh and when I get out of the shower I have a red splotchy face. This has never happened to me before. Could this all be from being sick, liver enzymes, mono? I am soo confused. Could my doc be missing something? I have had every blood panel done in the last 6 weeks, 5 cbc w/ differential, liver panels, iron, potassium, albunim, creatinine, and everything checks out. I am at a loss.
Hi Meatball, I also had Mono in the past with very high titers. The only thing is the titers never went down. They had thought I may have had lupus then, I did however have a positive ANA at that time but all the other test other than the ESr was negative. Ten years later (now) I still have a positive ANA and ESR plus several postive antibiodies. I have not had a Mono titer done but I would about guess it is still high. I really dont know much about it but I do believe the two have a connection because at the time I was tested for Mono I was also experiencing a red rash and was sicker than I had ever been.
Some drs. use ANA as a threshhold test, get the results---and only then decide whether to look for specific autoantibodies, such as anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, serum complements (C3, C4, CH50), antiphospholipid antibodies, etc.
Other drs. order the whole kit & caboodle all at once. Mine did.
MY EBV values were usually off the chart, but I did not have mono symptoms.
Have you actually seen your lab results, to see exactly which tests have been performed?
Tina V- What ithe difference between titers for EBV and an EBV profile. Is it the same test? The one I had referred to IGG and IGM antibodies, and anything greater than 1.10 meant active infection. I guess the thing my dr was looking for ws to see if my IGM was negative because usually everyone has positive IGG antibodies.. all mine were positive and I don't get how I can have mono again??
VeeJ- To my knowledge my doc ran a standalonle ANA. All I know is that he said it came back negative. I don't think he checked for any of the antibodies you were mentioning above, maybe because my bloodwork checked out? (besides the liver enzymes being extremely high)
My question is, should I push for further tests? Are there abnormalities on all my panels that he would have seen to suggest lupus?
Thanks Vee.. The only problem is, I already had mono and I don't believe you can get it twice.. I just feel "off" like there is something more wrong with me. It's been over a month and I still feel crappy.
The first doc that diagnosed me with mono did a spot test back when i was 15 but the new doc that said I have it did the full EBV profile (am 28 now). He said mono spot tests were sometimes unreliable..?
I read some mono info earlier today. One article said people "usually" don't get it twice---meaning, I suspect, that sometimes it can happen?
Maybe your first doc had it wrong? (What a thought!)
Personally I was told so many wrong things along the way that I wonder about 99% of what I thought I knew back then. But I have a strong snse of belief & trust in my current rheumie & my current GP, finally. My current rheumie, by the way, wasn't at all surprised to see my wildly high EBV levels.
How do you feel about the current doc? Does he make sense, generally speaking? Do your gut instincts have you trusting him, or not sure yet?
Anyway, hang in there & let us all know how you are doing, OK? Best wishes, from Vee
I just got a mag today that had an article discussing new research about the suspected link between EBV and lupus. This idea has been around for some time, but now new research is suggesting that when people create antibodies to EBV, that a certain protein created "cross-reacts with a piece of a protein called Ro". (Of course, this bad response happens only in people genetically predisposed.)
Anyway, the word "Ro" really caught my eye. It's the anti-Ro autoantibody that is most strongly associated with SCLE subset. The article spoke, though, to lupus in general, not just one subset---so I'm not sure how to understand the mention of just Ro. Hmmmm....
It's known that EBV is a latent virus that lives on forever in our B cells. They can't tell why, all of a sudden, after years, our immune response to it might become a LUPUS response.
I also remembered something my city rheumie told me. I was curious why my ANA had not become positive, while I had such heavy rashes, swollen joints, fever, anemia, etc. He told me it's *thought* that sometimes this one autoantibody, anti-Ro, can "mask" the ANA test.
I know from my own prolonged & utterly frustrating experience that being ANA-negative put me back years. I'd never heard of anti-Ro, or of SCLE, or of rashes other than malar. It makes me wonder this: if you continue to feel really punk, that it may take a really sophisticated rheumie to sort through the possibilities.
It's not everyday that I read something besides a menu and suddenly think MEATBALL. But I did today, so there you have it. Hope you are having a good weekend. Sincerely, Vee
Hi. Just wanted to comment on this post because my previous dr. suspected that I had mono and tested me for EBV. The results for EBV were positive but she told me that they were not positive in a way that would suggest that I had been exposed to mono in the past 6-8 weeks. I have been feeling rotten for longer than that and I am not presenting with the normal sore throat and fever that most mono sufferers have. I have never had mono and I foud information stating that 75% of the population would test positive for EBV. When I questioned my dr. about this that is when she told me she wanted to wait one month to see me again because in her medical opinion in the next four weeks I would get progressively worse or better. Great answer huh? I was unaware that there was a theory that EBV and lupus could be connected but it is a very interesting piece of info. Thanks for sharing. deedea.
Sorry I haven't got back to you sooner. Have not been feeling well. To answer your question, I'm not really sure. I will see if I can find my test and might be able to answer it than.
good luck, tinav