OT REPLY Not afraid to say I am using antibiotics

[Guest guest]

Thank you Marcia for sharing your neutral view - we appreciate it. I am sorry

this wasn't for you, but with your good nature I am sure you will eventually

control the beast.

Take Good Care

Sheri

Re: Not afraid to say I am using antibiotics

In a message dated 10/20/01 7:00:45 PM Central Daylight Time,

wega2@... writes:

> If there really are members using this therapy and it is working

> for them..great!! But, why in the world would they be afraid

> to say so??

>

I have not been afraid to say that I have been trying the antibiotic therapy

(minocin) for over a year now. I will be discussing with my doctor whether it

makes sense for me to continue. When I was first diagnosed, I had a complete

remission that lasted over a year, and I was on no meds at all. I felt great.

I started taking omega three fatty acids, and I was convinced that was the

reason for my remission.

Sadly, however, the disease flared and was followed by another remission and

then flared again and has been with me consistently. I have learned from this

group that that is common for AOSD. That some people, the lucky ones, flare

only once and then the disease goes away. Whether that is what is going on

for or not, I don't know. I did decide to try the antibiotic therapy

last year because I had read about it and my doctor was supportive, though as

long as I kept taking the enbrel, arava, and mtx which were keeping me

functional.

I don't talk much about being on the antibiotic therapy because it isn't

helping me and there is a real catch 22 in that the proponents of it say you

have to be on it for three or four years to get results. I would have

expected, however, that after 15 months, there would have been some

consistent improvement, and sadly, for me, there is not. This leads to to

conclude that for the kind of AOSD most of us have, it probably is not an

effective therapy.

It was really hard to come to that conclusion. We all so desperately want

something that will return us to health, and the hardest thing is the " roller

coaster " we go on when we try something and find it doesn't work for us.

I wish continued good health to , but I also wish he would be open to

believing those of us who are not willing to get on yet another roller

coaster, with so much evidence that it doesn't work for AOSD. The

Roadback.org does not have success stories (except perhaps 's) for people

with AOSD. It is mostly people with RA, Scleraderma and lupus who write on

that site. And AOSD is a beast of a different color.

Marcia