Your Dr. trip

[Guest guest]

Hi Roneice,

I hate to tell you this, but I laughed hysterically reading your email. I

hate to laugh at your expense, but has anyone ever told you that you're an

excellent writer? I could so well relate to everything you were saying &

your experience w/the God himself Rheumatologist.

I was diagnosed w/lupus 18 months ago, but realize I was sick long before

that. I seemingly had an abrupt onset, woke one morning w/every single joint

in my body affected. Intuitively I knew, I was about to embark on a journey

I didn't want to go on. I'm a nurse & I knew this wasn't a simple virus.

Many blood tests proved me correct & I was given the lupus diagnosis. They

initially thought I had RA & ironically, put me on Minocin, but as soon as I

diverted onto the lupus path, I was taken off of it. Due to a very long

story, I burned bridges with that Rheumatology office, or else I would go

back & explore antibiotics once again.

To make a long story short, I have corresponded via email with that Harvard

Rheumatologist & he thinks antibiotics are prudent for lupus. I drafted up a

very lengthy letter to my local Rheumatologist trying not to question her

holiness or authority, tried to emphasize the desperateness of my situation,

yet trying to get her to understand that taking antibitotics used to treat

teenage acne wasn't nearly as risky as using the DMARDS she is currently

offering me. In my letter, I refer to corresponding with the Harvard

Rheumatologist via email. I call down & request her email address & am told

that she doesn't correspond with patients in this manner. I printed the

letter and snail mailed it to her, and hope that she sees the irony that a

Harvard Rheumatologist took the time to respond to my email and I'm not even

his patient, and yet, I was told I could not correspond with my

Rheumatologist in this manner.

At any rate, I'm seeking the treatment out of network, out of pocket from the

Dr. in Iowa. It all sounds rather hokey, small town country doc curing

people of their rheumatic illnesses, but I have developed such a mistrust of

mainstream doctors, that this is the first thing that is starting to make

sense. My treatment starts in June. I've had two phone conversations with

the guy. He said I would probably be able to get off of the Placquenil

eventually. I'm incredulous at this point, but I see no reason why this guy

would say that if it weren't true. He promised me that he has NEVER made

anyone worse. He's obviously no money pit, he charges $150 for a 2 hour

office visit & the IV antibiotics are done at the hospital (outpatient), so

they're the ones profitting from that. Then, he works with you on the phone

after initial consultation. A truly caring man in it for all the right

reasons.

Anyway, I've been down your road, you articulated it so well. Good luck to

you, Patrice