, Lynn, etc. re:AP

[Guest guest]

Hi all... wanted to give you some thoughts on the Antibiotic

Protocol thing... my first time around I went to my rheumy that had

me on Prednisone and he was at the point where he wanted me to go

the Methotrexate route. I pretty much said Thanks, but NO. and I

told him I had read The New Arthritis Breakthrough... brought it and

the protocol with me... he wouldn't even look at. Said it was not

proven, etc. I held my ground, said he could Rx for me or I'd find

someone else... he gave me the prescription for Minocycline to take

2x daily (but the protocol was only 2x MWF - so I had a bigger

supply!! I refilled it each month just to be sure it wouldn't run

out). At the time I was taking maybe 15mg of prednisone and was in

the midst of my worst flare ever - my skin was like a second degree

burn and cpks were elevated. I was using Dermablend to attempt to

cover up the rash on my face. My GP even wrote me scripts for the

minocycline and I didn't even have to ask my Rheumy for it. Things

just got better and better, skin improved, cpks normal, I was able

to wean from the prednisone very slowly and then was off of it (for

good) - My Rheumy was amazed - didn't Rx it for anyone else tho! I

even met another gal on line and we found out we both had DM, and

the same Rheumy... she was on Metho and doing terribly. She called

him, said she and I had met and she too wanted Minocycline - he Rx'd

for her and she is went in remission. Eventually I even went off

the minocycline, had a wonderful pregnancy and birth - but then

flared a month after the birth... this time around I used a

different antibiotic (Erythromycin 250mg 2x daily - safe for baby

when breast feeding) my CPK was 1755, it came down steadily and all

is normal again... I weaned slowly to a maintenance dose which I am

holding at 250mg MWF. I take Acidophilus 200mg on the days I take

the Erythromycin so I don't get yeast infections.

Incidentally, this time around, I went to my new GP when I first

felt the symptoms (5/2001) and he had never heard of DM - looked it

up in a book and read it to me. Read all the 'traditional' meds...

he is a huge proponent of Breast feeding - so he was happy to look

at alternatives for me. I brought a list of antibiotic options:

Minocin (minocycline), Dorxy (doxycycline), Tetracyclines and we

found Erythromycin would be a good one to try. He gave me a Rx and

asked me what my back up plan was... I said if it didn't work, I'd

wean Kaitlyn and then go on Minocycline... I said I didn't think I'd

need to consider anything else. He 'high-fives' me everytime he

sees me is so thrilled with the results (ME TOO). And, I am not

just 'getting by' - there are no DM obstacles for me... I hike,

bike, swim, play, pull weeds, care for 3 kids (4 if you count my

husband, and 5 with the dog!).

So, just because you might not have access to an AP doc... you might

just try out some nice assertiveness - it is your health and your

body. I am extremely respectful of my body's messages to me. Be

sure to listen to yourself...

If you have any questions or comments - you can reach me at

ldutro@...

Good luck.

[Guest guest]

Hi Dutro :-) Sorry,I don't know your name :-0

I really liked your post, though. It was so nice to hear about

another AP success story. (not that they are rare among those who

use the treatment, but sometimes just not around when we need them :-)

It was so nice that your GP was really willing to listen! You might

not have completlely convinced your rheumy that the AP is indeed a

viable option (and who knows, maybe he will come around eventually),

but you sure did help many people through dialogue with your GP.

Cheers!

Connie

> Hi all... wanted to give you some thoughts on the Antibiotic

> Protocol thing... my first time around I went to my rheumy that had

> me on Prednisone and he was at the point where he wanted me to go

> the Methotrexate route. I pretty much said Thanks, but NO. and I

> told him I had read The New Arthritis Breakthrough... brought it

and

> the protocol with me... he wouldn't even look at. Said it was not

> proven, etc. I held my ground, said he could Rx for me or I'd find

> someone else... he gave me the prescription for Minocycline to take

> 2x daily (but the protocol was only 2x MWF - so I had a bigger

> supply!! I refilled it each month just to be sure it wouldn't run

> out). At the time I was taking maybe 15mg of prednisone and was in

> the midst of my worst flare ever - my skin was like a second degree

> burn and cpks were elevated. I was using Dermablend to attempt to

> cover up the rash on my face. My GP even wrote me scripts for the

> minocycline and I didn't even have to ask my Rheumy for it. Things

> just got better and better, skin improved, cpks normal, I was able

> to wean from the prednisone very slowly and then was off of it (for

> good) - My Rheumy was amazed - didn't Rx it for anyone else tho! I

> even met another gal on line and we found out we both had DM, and

> the same Rheumy... she was on Metho and doing terribly. She called

> him, said she and I had met and she too wanted Minocycline - he

Rx'd

> for her and she is went in remission. Eventually I even went off

> the minocycline, had a wonderful pregnancy and birth - but then

> flared a month after the birth... this time around I used a

> different antibiotic (Erythromycin 250mg 2x daily - safe for baby

> when breast feeding) my CPK was 1755, it came down steadily and all

> is normal again... I weaned slowly to a maintenance dose which I am

> holding at 250mg MWF. I take Acidophilus 200mg on the days I take

> the Erythromycin so I don't get yeast infections.

>

> Incidentally, this time around, I went to my new GP when I first

> felt the symptoms (5/2001) and he had never heard of DM - looked it

> up in a book and read it to me. Read all the 'traditional' meds...

> he is a huge proponent of Breast feeding - so he was happy to look

> at alternatives for me. I brought a list of antibiotic options:

> Minocin (minocycline), Dorxy (doxycycline), Tetracyclines and we

> found Erythromycin would be a good one to try. He gave me a Rx and

> asked me what my back up plan was... I said if it didn't work, I'd

> wean Kaitlyn and then go on Minocycline... I said I didn't think

I'd

> need to consider anything else. He 'high-fives' me everytime he

> sees me is so thrilled with the results (ME TOO). And, I am not

> just 'getting by' - there are no DM obstacles for me... I hike,

> bike, swim, play, pull weeds, care for 3 kids (4 if you count my

> husband, and 5 with the dog!).

>

> So, just because you might not have access to an AP doc... you

might

> just try out some nice assertiveness - it is your health and your

> body. I am extremely respectful of my body's messages to me. Be

> sure to listen to yourself...

>

> If you have any questions or comments - you can reach me at

> ldutro@w...

>

> Good luck.