Antibiotic Protocol: types for PA?

[Guest guest]

Call me crazy, but the impression I'm getting is that, for those folks

with PA (not RA) and who are following the antibiotic protocol, the

antibiotic that seems to work best is doxycycline. (I myself am

currently on minocycline, with less than stellar results after 5

months.)

Any input on this? Can anybody confirm or deny? Have any of you PA'ers

started on mino and then switched to doxy?

thanks lots,

--Louise

PA diagnosis 9/99 but had it at least since 1995; on AP (mino.) since

6/01

[Guest guest]

Hi -- I am very interested in the antibiotic therapy. Does it mean you can

be off pain medication (NSAIDS) altogether? Does it help protect your joints?

Compared to many of the folks in this group, I have a fairly mild case of PA,

but it would be nice to be pain free and feel like my old self again. -- Jan

O', Alaska

jbgreenly@... wrote:

>

> >

> > Call me crazy, but the impression I'm getting is that, for those folks

> > with PA (not RA) and who are following the antibiotic protocol, the

> > antibiotic that seems to work best is doxycycline.

>

> Hi Louise- I've had wonderful results with doxycycline, but I don't

> know of any data that says it should be better than minocycline. I

> started with doxy because that was cheapest, and what my doctor was

> willing to prescribe.

>

> Best regards, Greenly

>

>

>

[Guest guest]

Hello,

I have was diagnosed with PA since 1996.

At first, my Reumy told me that I had a severe case.

I had pitted nails...and my blood work showed negative for RA.

I was put on gold shots at first, and my protein level got too high to

continue.

So then he put me on MTX...20mg...shots once a week, with 200 mg of

plaquinileSP? 2x's a day, plus 3, 800 mg's of Ibruprophen a day.

He also told me, that I could take up to 8, 500mg's of extra strength tylenol

with that for pain.. which I did.....Gag....

I told him on Nov 8th, that I had read wonderful results about the AP..I also

took in material, that I had printed out, about info on the AP...

He then took me off of the MTX..and sent me home with a prescription for

doxycycline...100MG, 2x a day.

Since then, I have had wonderful results..really no pain in the am..as

compared to before..also my memory seems better too...also, I have cut back

on the pain meds...

This is really amazing..because I have been under a tremendous amount of

stress because my mother is dying..and has had to be put on a life support.

Under this type of stress, I would have had, a major flare up...but, I have

been fine, and my co- teachers, are just amazed, at how well I feel.

I teach a special ed preschool..I have to be very much, on the ball, at all

times...For instances..today one of my students choked on a potatoe chip, and

I had to do

the Heimlech procedure...I can personally attest to the relief of pain, and

the strength, and energy that I now have. I have found this from the AP

program.....

I feel great, I am 55, and this is my 24th year of teaching. I hope that I

can continue to teach, and be a help to my special ed babies....

I know a lot of you, don't have the physical demands, that my job has,

However, you need to continue on, as you did before, to have a normal life,

and you can,..please check out the Roadback.org...and let me know what you

think.

Best wishes, and prayers for all of you!

[Guest guest]

Thats tremendous! which Minocin do you take? the name minocin belongs to

Lederle and many generics out there like Dyocin which is minocycline but a

generic. Problem is and I am getting this from a pharmcist is that Lederle is

going to stop production of their minocin. Do you go the Mon Wed Fri 100mg

twice a day? I'm just starting to investigate this and I now have some MD

that practice this, really happy for your success hope it gets even better.

ED

[Guest guest]

> Hi -- I am very interested in the antibiotic therapy. Does it

mean you can be off pain medication (NSAIDS) altogether? Does it

help protect your joints?

Hi Jan- I have been off all NSAIDS and everything except the

antibiotic for about 2 1/2 years now. My doctor says there has been

no detectable progression of joint or tendon damage over this time.

This is after 28 years with PA, and 5 previous surgeries. Not

everybody does this well, but some of us have done wonderfully- you

have to be patient and give it at least 6 months, or preferably a

year, I believe, to really see what it can do for you.

Best regards,

[Guest guest]

>

> Thats tremendous! which Minocin do you take? the name minocin

belongs to

> Lederle and many generics out there like Dyocin which is minocycline

but a

> generic. Problem is and I am getting this from a pharmcist is that

Lederle is

> going to stop production of their minocin. Do you go the Mon Wed Fri

100mg

> twice a day? I'm just starting to investigate this and I now have

some MD

> that practice this, really happy for your success hope it gets even

better.

>

> ED

>

Hi Ed,

I've had good success with Minocin by Lederle. I think that

Minocycline is the generic form of Minocin. If you use this brand

make sure that you get the pellets instead of the powder form within

the capsule. I started out taking 100mg once per day on Mon Wed Fri.

After a couple of months I increased the dose to 100 mg Mon Wed Fri

2xs per day and it caused me to have a herx. Currently taking 100mg

Mon Tues Wed Thur Fri with very encouraging results.

If you are just beginning to investigate the antibiotic therapy I

recommend that you do the following.

1. Visit the www.roadback.org site.

2. Read The New Arthritsi Breakthrough by Henry Scammell

3. Read past posts on this site be Greenly.

Wishing you the very best.

Joe Godfrey

[

[Guest guest]

-

Hi ,

Glad to hear that things are still going so well for you. What is your

current dose of doxycycline? I would appreciate it if you could tell

me your history on this antibiotic. What dose did you originally start

out with? Did you try increasing or decreasing the dose before you

arrived at your current level? What do you think that the future

holds? Do you anticipate being on antibiotics for good?

Wishing you continued success.

Joe Godfrey

-- In @y..., jbgreenly@y... wrote:

>

> > Hi -- I am very interested in the antibiotic therapy. Does it

> mean you can be off pain medication (NSAIDS) altogether? Does it

> help protect your joints?

>

> Hi Jan- I have been off all NSAIDS and everything except the

> antibiotic for about 2 1/2 years now. My doctor says there has been

> no detectable progression of joint or tendon damage over this time.

> This is after 28 years with PA, and 5 previous surgeries. Not

> everybody does this well, but some of us have done wonderfully- you

> have to be patient and give it at least 6 months, or preferably a

> year, I believe, to really see what it can do for you.

>

> Best regards,

[Guest guest]

- congratulations!! its stories like yours that inspire me to keep

looking, you certainly showed a lot of guts to persevere through your

circumstances, and hats off to your rheumy to put his ego aside and give the

AP a shot, thats the mode I.m in now and hope to have the same success,

continued good luck.

Ed

[Guest guest]

Thanks, I did all three that you mentioned, book,web site etc, has your

pharmacist mentioned Lederle discontinuing Minocin? thanks

[Guest guest]

Ed,

If your rhuemy doesn't want to try the ap....I would suggest that you

shop around for another.

Best Wishes,

[Guest guest]

> -

> Hi ,

>

> Glad to hear that things are still going so well for you. What is

your

> current dose of doxycycline? I would appreciate it if you could

tell

> me your history on this antibiotic. What dose did you originally

start

> out with? Did you try increasing or decreasing the dose before you

> arrived at your current level? What do you think that the future

> holds? Do you anticipate being on antibiotics for good?

Hi Joe- I reduced my dose about six months ago from taking 2 x 100

mg MWF by half, so now it's just 100 mg MWF. So far I see no

backsliding, in fact, I'm still getting stronger- I can actually run

now, a little, on these legs that had been so messed up over the

years. I started out with the higher dose, which was probably a

mistake, because I felt terrible for a while. I should have followed

advice and started lower and worked up to it.

I expect I will not stop the antibiotic completely, ever. I have

heard of people who did stop, and eventually the disease came back.

As far as I can determine, and my doctor agrees, there is no reason

not to take it forever, and at $7 every other month, I can afford it!

best regards,