Hey yall, I read in a post from Poopedpuppy (that name makes me smile everytime) that she has heard of some links between EBV and RA. I was wondering if anyone knew more about that. You know my husband was just dx'd with EBV and so now I am wondering if there are any possible connections or if I should be tested too. I guess there would be nothing to be done anyways right? I dont know that much about EBV, all I ever find is info on the acute phase but he is in the chronic stage. Our PMD is smart and nice but she really rushes through appointments and I am getting tired of that. If we are going to take the time to go and spend money (even if its just a co-pay), I expect them to give me more than 5 or 10 min. if I need it. So...time to find someone else. Anyways, you guys usually come up with pretty good info so I thought I would start here. Anyone know anything
mary He is so frustrating....he still has not even attempted to make an appt. with the specialist she reffered him to....I swear, I feel like have another son instead of a husband sometimes!!!! MEN!!!! I actually talked to one of the docs that I work with tonight and he said that the whole concept behind EBV is pretty contriversial. He basically said that most people who are dxd with EBV have something else going on that is causing their symptoms. I almost wonder if docs just use this as a way to shut up the patient. Since they can't say "suck it up, we all get tired" , they do this blood test, call it a fancy name, then tell you theres no treatment so just try to deal with it. It you are just going through a period of stress or something then it passes and you think you "got better". Otherwise you start having other symptoms and then get the proper dx from what you've had all along! I'd be willing to bet money on the fact that things like that happen all of the time. It is the same reason docs perscribe meds that dont work any better than than OTC meds. It makes the patient feel that something important has taken place. Patient satisfaction is a big deal. Not because we want to better the lives of others, but because a happy customer is a repeat customer and that means more money. I know, I kind of got on my soapbox there, but I can't help but feel frustration with a profession that has become an industry. Oh well....I still love it.... I guess it is what you call a love/hate relationship
Our family practice doc is the one who we are having problems with. They wont even give you test results without another appt! I think in my husbands case he probably needs to transfer his labs to an internal medicine doctor and then go from there instead of going to a specialist. I called an Infectious Ds. docs office to set up an appt at the recommendation of our PMD. The clerk took his info and reason for wanting to be seen. She said she would talk to the doctor and call us back. That was 5 days ago and still no call. I am guessing that the doctor does not want to address the EBV thing. Maybe he is one of the ones who does not "believe in it" or what ever. I think we need to back up a bit and redirect.
I 'believe' that some of the medical community doesn't believe in EBV
and fibromyalgia. That could be why you got the cold
response. I think it is important to have a good relationship
with your doctor. I hope you find out what you are looking
for.
I found these results on the test for EBV at a site I frequent for
medical info.
http://www.nlm.nih.gov/medlineplus/ency/article /003513.htm
Parvo, but they couldn't tell me when, and didn't mention a link.I also have epstein barr and ...they think fibromyalsia. I was diagnosed with epstein barr about 10 years ago when my fatigue was just sooo incredible. The doctor really thought I was just adjusting to having a baby and working but then did the test. Over the years whenever my fatigue and achyness was too much I would have my bloodwork done.My bloodwork was always positive and always showed my EBV was active. I was only teasted for ra when I started having tingling and numbing (last summer) . I wonder when I actually had ra.Perhaps it was all along. Doctors don't put much stock into EBV and there is nothing you can do for it. I even went to Univ. of Pa hospital to a specialist who basically told me EBV is not a big deal, change my lifestyle to reduce stress and think about an anti depressant. I left there thinking ..is this in my head ? I was diagnosed with ra about 6 months later when I had new bloodwork done. What I have read is that a possible cause for ra is a virus....EBV is a virus, but who knows. I know so many people with EBV who later become dianosed with fibromyalsia. Ra may be related...it's my thinking anyway. I am sorry this is soo long. I guess it's a sore subject for me because doctors pooh pooh EBV and make it seem like a lot of it is in your head. I found my ra diagnosis validating, upsetting..I'm still grieving : (...but at least I know a lot of my symptoms weren't in my head! Let me know if you learn anything new. good luck! Suzq
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