Trentham tidbit

[Guest guest]

Hi Everyone :-)

Just thought I'd share this story that appeared on the

rheumatic list from a lady with another connective

tissue disease called scleroderma. It is characterized by the body's

making too much collagen in addition to lung problems, and other

symptoms common to almost all rheumatic diseases. Dr. Trentham is

known to use Minocin to treat various rheumatic diseases, including

RP, and RA. Some of the other doctors familiar with the Minocin

treatment also add Biaxin, Clindamycin, and other abx to the regimem

and see promising results and they feel it is especially important

with a serious, lung involving disease like scleroderma. Lastly, I

wanted to point out that the lady in this post quit her Minocin after

two years (I would assume under Trentham's watch). In many cases it

has been found that patients need to remain on a maintenance dose of

Minocin, sometimes indefinitely. Take care, Connie

---------- Forwarded message ----------

Date: Tue, 19 Jun 2001 16:22:52 -0500

From: Joyce Small

To: cadlard@c...

Subject: scleroderma

In Feb.1999, I found myself short of breath. Since I was 70 years

old, I went

to the Dr. He put me thru heart and lung tests. Nothing showed up to

indicate any problems. About April my hands started to break out with

big

sores. I was treated for Raynauds. The Dr. took a blood test and

then

inform me I had scleroderma. I got to the point I couldn't do much

of

anything (not even to bend down to put my shoes and socks on). My

hands and

feet swelled up so I couldn't wear my rings and some of my shoes.

Our daughter worked in a school library and called me to tell me

about Dr.

Trentham at Beth Isarel Deconness Medical Clinic in Boston. She

made an

appointment for me in June of l999. He prescribed minocin

(minocycline) and

said he would have me cured in two years.

I started improving and now am able to do just about everything I

couldn't

do for awhile. We dance a couple of times a week and I now can dance

the

whole dance (even the fast ones) I do all my own household duties, in

and out

of bathtub and just so many things I couldn't do for awhile.

We just got back from Boston. We went to see Dr. Trentham and he was

very

happy with my progress. I am now in remission and off the pills.

I would be happy to hear from anyone and share my wonderful results.

Joyce M. Small

P O Box 5037

Laguna Park, Tx 76644-5037

smallchange@h... comp.net

[Guest guest]

Connie, thanks for the great information. I just came back from my PCP and

everything is looking good. He is really happy with the Biaxin and how it is

working. He didn't want to add Minocin now, but maybe later down the road.

I took him some articles from the Road back site. He said he will read them

and seemed really interested. He doesn't know much about the mycoplasma. So

it was good news.

I still feel great. Had a scare last nite... My left ear started really

hurting on the outer inside. lOL Where you stick your finger going into the

canal. So painful I couldn't move my head. but it wasn't red. I took an

ultram and my xanax and went to bed praying that it wasn't a flare. I was

sort of depressed and mad. Well this morning I woke up and had very little

pain, just on the inside of my ear. down deep. The dr said he couldn't see

any inflamation or infection. It feels stuffed, but so do my sinuses so

hopefully it just that.

I started the PB8 and coQ10 (that my cardiologist put me on). Have to say I

feel better than I have in a long time. (Except for my feet, and I go for

the MRI results next week on them)

I have gotten down to 12mg of pred and even my dr said, " Boy, you don't look

so puffy " , that's when I gave him a hug...LOL

Thanks for all of your information. It seems to be working for me for now

and I am so thankful. I still have my bad days (achey, hurting and fatigued)

but I just plop myself in a Epsom salt and Hydo Peroxide bath and go lay

down. The fibro pain is much better, and I thought coming off the pred it

would flare up.

If you were here right now, I'd hug you to pieces!!!!! Don't know if it will

last forever, who knows, someday I might have to go back on another drug, but

for now, I couldn't be happier.

Sending you a GREAT BIG HUG

[Guest guest]

Dear , so happ you are feeling good, I did too yesterday. Went grocery shopping, caught up on some housework made supper, had all this energy. It was wonderful. One thing is the coQ10, Coenzyme Q10? Aren't are bodies amazing, I took that and from what I understood it boosts the autoimmune system. But with our different symptoms, etc. its working for you. My ears get red even when I wash my hair, and now and then they just hurt for a an hour or two, sometimes just a couple minutes. Also, what is hydro peroxide? Lets me party animals on the good days!!! Love ya. Sue