Re: ok, here goes...

June 22, 2010

It may be Lyme disease.Â If you are interested to get tested for lyme let me

know to give the name a reliable lab.

soheilaÂ Â

From: mprice0823 <mprice823@...>

Subject: rheumatic ok, here goes...

rheumatic

Date: Tuesday, June 22, 2010, 7:02 PM

Â

Another newbie here. I've been reading for a little over a week and I guess I'm

ready to start posting...

I am a 34 year old mother of 3. I was diagnosed with RA about 8 months ago after

about 6 months of being told that I had chronic EBV by my family Dr.

I have completely normal blood work and no swelling. My diagnoses was based on

morning stiffness and the fact that 1 erosion showed up on x-ray. I have, from

the beginning questioned my diagnosis and the treatment plan (methotrexate) that

my rheumatologist recommended. Here's how it started...

I woke up one morning with a scratchy throat. The next day it was worse and

looked red with white spots. I NEVER get sick and have never had strep. I

assumed that I had a little virus. We were going out of town and I'm not one to

let a little sore throat ruin a family trip. The next day it was even worse and

I had a fever and chills and was just exhausted. I was out of town with no

access to our local Dr. I decided to wait and see and make an appointment if I

wasn't better the next day when we got home. The next day I WAS feeling better.

I was on the mend! I had 2 good days, we worked in the yard, everything was

great. I went to bed one night and woke up the next morning in agony. My entire

body was on fire. I was so stiff that I literally could not get out of bed (I

know that many of you have been there).

I loaded the kids up in the car to go to the store for some ibuprofen and I

couldn't even shift the gear shifter. I was in tears trying to hold onto the

steering wheel! I decided that the yard work was just too much too soon after

being sick, but I knew that this was different than just being sore. I finally

went into the Dr. They did a strep and mono quick test and both were negative. I

was told that it was mono, that the test was surely a false negative. Given a

scrip for Celebrex and sent on my way. At the time, I was CONVINCED that I did

NOT have mono. I've always believed that antibiotics are overprescribed by drs,

but I was upset that they wouldn't give me an antibiotic. I was SURE that

whatever I had would be helped by a simple antibiotic.

The Celebrex did help, but I was still in lots of pain and very stiff in the

mornings and after sitting for more than 30 minutes. I went back to the Dr two

weeks later. They told me that it was still mono and at my urging, did further

blood work. Everything looked normal and I showed EBV antibodies, the dr told me

to just let it run it's course. To get lots of rest (haha! I have 3 small

children!) and that I would feel better in a couple of weeks.

Two months later, still in pain, I went back to the Dr again. This time I was

told that it must be chronic EBV and that I would just have it for the rest of

my life. At this point, I was calling BS. I KNEW that something else was wrong

with me! I did research and my symptoms did seem to match, but in my gut, I felt

that it was the wrong diagnosis.

I decided to up the ante and a nurse friend recommended that I see a

rheumatologist. She is fairly confident that it is RA, and it still might be,

but I still feel like it is not an exact fit.

Here are the arguments for and against...

I have one wrist that showed erosions, but I have had an injury to that wrist

and have had problems with it for 8 years, so the x-rays could be showing damage

other than RA.

The onset was sudden. Sudden onset does happen in RA, but it seems to be fairly

rare.

I am seronegative. Again, that does happen.

I have NEVER had an elevated sed rate. I have had 8 set of bloodwork over the

course of 15 months and even when I was at my worst, nothing in my bloodwork was

out of the ordinary.

My stiffness is worse in the morning and when I've been sitting (typical RA)

After a shot of prednisone in the rear I was almost symptom free. The dr said it

would last from 2-6 weeks, mine started tapering off after almost 3 months. Dr

felt that the good reaction to prednisone pointed toward RA.

Anyway, long story short. I am not a " do whatever the dr says " type of person.

My rheumatologist has really been pushing me toward methotrexate. The thought of

that stuff makes me want to run away screaming. I decided to try sulfasalazine a

few months ago. It seemed to be the lesser of the two evils and I was feeling

pretty hopeless at the time.

When I found this group, it was like a lightbulb coming on. From the beginning,

I felt like my problem was infectious and would be helped by antibiotics. The

drs looked at me like I was crazy for suggesting it and for a while I thought

they might be right.

I would appreciate any feedback. I'm sorry for posting my whole long sob story,

but I honestly feel like I need to treat the source of my problem and not the

symptoms and I'm hoping that someone else on here can share their success and

help to point me in the right direction.

I live in the Dallas area.

Thanks!!!!

June 22, 2010

I believe what I have is Reactive Arthritis. Have you read much about that? My

arthritis was sudden onset one week after being diagnosed with a bladder/kidney

infection. I am to this day (5 years later) seronegative and I'm HLA-B27

positive. I was tested for Lyme and it came back negative.