Re: newcomer with intro and question about treatment

[Guest guest]

Hi Anne,

Welcome to the RP group.

I was on Minocin for 2 1/2 years but did not have much luck with it but I know it has helped others. We are all so different when it comes to meds. What works for some does not work for others.

Looking forward to getting to know you.

Sandy

Hi, everyone. I was diagnosed with RP and Behcet's syndrome last week (by a well-knownRP doc in Boston). My symptoms are pretty mild right now, but I've been experiencing flaresand remissions for the past 21 months (since the birth of my child). I read on a patient web-sitethat some RP patients have found the antibiotic protocol (minocin) to be an effective treatment for RP. Doany of you have experience with it or know what doctors might be knowledgeable about RPand AP? I know that this treatment is controversial in some circles, so I hope I'm notstirring up any bad feelings by asking this!! I look forward to getting to know you all.Best,AnneDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Hi Anne :-)

Welcome to the family :-) This really is a great group of people! I

haven't been able to read every post lately, but I sort of skim them

to keep in touch. I saw yours about the antibiotic protocol and

thought I'd better toss in my two cents :-)

I've been on Minocin, plus either Zithromax or Biaxin for most of the

past 4 and a half years and so many symptoms are a distant

memory...the fatigue, ugh!, the muscle aches, joint pains, brain fog,

etc. are gone for me. My ear does not get red/sore nearly as often

as before, and it usually lasts only a couple of hours. I still have

a cough, but only two or three times per day, as opposed to hundreds

of times per day. For me, this is the right treatment.

I know RP and Bechet's are nasty diseases, and one treatment does not

fit all....On the other hand, I almost always nag (OK, nudge :-)

people to look seriously into the antibiotic treatment. The

wonderful people here allow me to chime in about the antibiotics.

This group is very accepting of everyone. Yes, doctors and patients

alike will have reservations. Some will try it (and I mean research

it and find out the details, not just pop a 10 day course of any old

antibiotic) and some won't. I've personally known many people with

various rheumatic diseases who have " gotten their lives back " because

of the antibiotic protocol.

You mentioned a " well-known RP doctor in Boston " ....Dr. Trentham, by

chance? If so, there's a very good chance that he will work with

you, should you decide to go with the antibiotics. He is not only an

expert on RP, but he is well-versed on the antibiotic treatment. The

best thing for you to do is read....everything you can get your hands

on, so you can discuss all the options with Dr. Trentham. If this is

something you want, go for it. Take care, Connie H

Here's my favorite list:

The New Arthritis Breakthrough by Henry Scammell (Dr. T is even

mentioned quite often in this book)

www.rheumatic.org

www.roadback.org

www.thearthritiscenter.com

www.immed.org

> Hi, everyone. I was diagnosed with RP and Behcet's syndrome last

week (by a well-known

> RP doc in Boston). My symptoms are pretty mild right now, but I've

been experiencing flares

> and remissions for the past 21 months (since the birth of my

child). I read on a patient web-site

> that some RP patients have found the antibiotic protocol (minocin)

to be an effective treatment for RP. Do

> any of you have experience with it or know what doctors might be

knowledgeable about RP

> and AP? I know that this treatment is controversial in some

circles, so I hope I'm not

> stirring up any bad feelings by asking this!! I look forward to

getting to know you all.

>

> Best,

> Anne