Re: Antibiotic treatments (AP)

December 4, 2002

Where do the AP Kooks get the 75% statistic? You

can't find credible research because it isn't there.

Just testimonials. R.E.

December 4, 2002

From: pookiegut@...

Date: Wed Dec 4, 2002 10:44am

Subject: Re: [ ] Antibiotic treatments (AP)

I am still confused. Do you stay on this FOREVER? What are the side

effects? How long does it work? There must be some side effects to this

too.

In a message dated 12/4/02 1:17:14 PM Eastern Standard Time,

hank@i... writes:

> I gradually stopped all other drugs 2 months ago and feel great. I

> can put on socks without pain etcâ€¦ I can kick my self for treating

> only symptoms for 3 years using Methotrexate, Sulfasalazine,

> Cortisone shots, etc.

>

> Go to the " Polls " after you have signed up and see how AP has worked

> for others at: rheumatic/

>

============================================

More questions:

1) What is early in the disease considered?

2) Is this considered an alternative kind of therapy?

3) It says people had long term results - over what period of time taking

the drug?

This is very interesting.

Thanks!

In a message dated 12/4/02 1:17:14 PM Eastern Standard Time,

hank@i... writes:

> . These

> results indicate that minocycline, given early in the disease, is

> effective in the treatment of RA. "

>

============================================

One more thing:

Does it alleviate the P too?

In a message dated 12/4/02 1:17:14 PM Eastern Standard Time,

hank@i... writes:

> rheumatic/

>

============================================

OK that makes me cry. I am here solely to learn.

I am open to looking into anything that might work.

In a message dated 12/4/02 6:01:51 PM Eastern Standard Time,

hank@i... writes:

> Ron is a guitarist whose hands and fingers (and his ability to play

> the guitar) were very nearly permanently damaged because he stopped taking

> his regular PA drugs while he was on AP therapy; ie, the damage to his

> fingers occurred while he was on the AP treatment. --Ron Dotson]

>

============================================

I must say I CAN'T allow this thought to go through my mind. I want to

believe that their are companies & people out there that are interested in

making me better. I want to believe that there is still good in this world.

In a message dated 12/4/02 6:01:51 PM Eastern Standard Time,

hank@i... writes:

> The Drug companies would rather you keep spending the $1 billion a

> day, than try something so cheap.

>

[Moderator's note: Five of 's individually submitted messages were

concatenated together via the magic of moderation. ;-) Ron]

December 4, 2002

> Where do the AP Kooks get the 75% statistic? You

> can't find credible research because it isn't there.

> Just testimonials. R.E.

AP Kooks !! Are you a neutral Moderator?

If you read message 23365, I gave links to a Poll, which are

Testimonials. But further on - links to the American College of

Rheumatology and their quotes of 2 blind studies.

The Drug companies would rather you keep spending the $1 billion a

day, than try something so cheap.

Signed,

" A Kook who is pain free "

The same Kook who got cured of ulcers before the medical

establishment formally recognizes the H Pylori bacteria. My doc was

blaming me for it, my stress.

[Moderator's note: For your information, the message that mentioned " AP Kooks "

was posted by Ron , not me (Ron Dotson). Ron is not a moderator. If I

recall correctly, Ron is a guitarist whose hands and fingers (and his

ability to play the guitar) were very nearly permanently damaged because he

stopped taking his regular PA drugs while he was on AP therapy; ie, the damage

to his fingers occurred while he was on the AP treatment. --Ron Dotson]

December 4, 2002

Ron - Sorry about your hands, can you provide details so that

others can prevent what happened to you.

Myself - I did not stop the other drugs until I felt cured. Then I

only decreased the drugs over a 2 month period. I also had the help

of a good doc.

Hank

_________________________________________________

Moderator's note: My recollection was pretty good, but not perfect. It seems

that the guitarist was " Ronnie " rather than " Ron . " Apparently they

are different people since they have different email addresses. In any case, one

of Ronnie ' posts about his experiences with the Antibiotic Protocol can be

found at:

/message/22373

-- Ron

_________________________________________________

> > Where do the AP Kooks get the 75% statistic? You

> > can't find credible research because it isn't there.

> > Just testimonials. R.E.

>

> AP Kooks !! Are you a neutral Moderator?

>

> If you read message 23365, I gave links to a Poll, which are

> Testimonials. But further on - links to the American College of

> Rheumatology and their quotes of 2 blind studies.

>

> The Drug companies would rather you keep spending the $1 billion a

> day, than try something so cheap.

>

> Signed,

> " A Kook who is pain free "

>

> The same Kook who got cured of ulcers before the medical

> establishment formally recognizes the H Pylori bacteria. My doc

was

> blaming me for it, my stress.

>

> [Moderator's note: For your information, the message that

mentioned " AP Kooks " was posted by Ron , not me (Ron Dotson).

Ron is not a moderator. If I recall correctly, Ron is a

guitarist whose hands and fingers (and his ability to play the

guitar) were very nearly permanently damaged because he stopped

taking his regular PA drugs while he was on AP therapy; ie, the

damage to his fingers occurred while he was on the AP treatment. --

Ron Dotson]

December 4, 2002

Here's my two cents on the AP treatment:

Minocycline is now officially listed as a DMARD by many reputable

arthritis centres, including the main arthritis centre, Pack

Centre, in Vancouver, where I live. However, it works best for early

PA that is either mild to moderate or slow progressing. It's true

that PA can be very damaging very quickly in some cases, so one must

be very careful. I have had a relatively moderate case of PA for 4

years that seems to be worsening in the last few months. Since I want

to try the protocol (which usually takes 3 months to notice any

effect and often has maximum benefit after 1 year), I decided to try

controlling my flares with intermittent, low dose prednisone, along

with NSAIDs. This approach is working so far and my new rheumy tells

me that prednisone is now thought to have a DMARD effect -- so I'll

have less risk of damage while I'm trying the minocycline. As long as

the prednisone is not causing side effects and the PA is under

control, I plan to stay on the minocyclin. I know prednisone is not a

long term solution, but it is acceptable to use it as a " bridge "

while waiting to see if a DMARD works. In low intermittent doses the

side effects are supposed to be minimal, which has been my experience

so far. I'll let the group know how this works out...

Sharon

> > Where do the AP Kooks get the 75% statistic? You

> > can't find credible research because it isn't there.

> > Just testimonials. R.E.

>

> AP Kooks !! Are you a neutral Moderator?

>

> If you read message 23365, I gave links to a Poll, which are

> Testimonials. But further on - links to the American College of

> Rheumatology and their quotes of 2 blind studies.

>

> The Drug companies would rather you keep spending the $1 billion a

> day, than try something so cheap.

>

> Signed,

> " A Kook who is pain free "

>

> The same Kook who got cured of ulcers before the medical

> establishment formally recognizes the H Pylori bacteria. My doc

was

> blaming me for it, my stress.

>

> [Moderator's note: For your information, the message that

mentioned " AP Kooks " was posted by Ron , not me (Ron Dotson).

Ron is not a moderator. If I recall correctly, Ron is a

guitarist whose hands and fingers (and his ability to play the

guitar) were very nearly permanently damaged because he stopped

taking his regular PA drugs while he was on AP therapy; ie, the

damage to his fingers occurred while he was on the AP treatment. --

Ron Dotson]

December 5, 2002

Good grief. Is this AP bashing still going on here? I left this group over a

year ago because I felt I received no support. I came to see if the climate

has changed. I guess not. Why can't people just be supportive of others?

I have been on AP for almost a year and a half and it has helped me

immensely. I can't speak for anyone but myself, but I feel it's important

people know there are options out there. For sure this isn't a quick or easy

route. But because I've taken a natural and holistic approach to this

disease, I feel I've not only stopped the onslaught on my digits, muscles

and organs, but have begun healing the real root of the problem in my body.

And no, it's not that my immune system needed to suppressed, rather it

needed boosting and support.

I was nearly bed ridden before AP and now I get around just fine. I even

have gone back to the gym and work out regularly. And here I am at

11:30...up and writing this email where a little over a year ago I was too

exhausted to stay up past 8 p.m. The PA has stopped attacking my fingers. I

still have bad days, but nothing like where I was and I continue to get

better little by little. Even my liver enzymes are back to normal (on

antibiotics no less). My doctor is so impressed with my progress, she is

sharing our work with the other colleagues in her group practice.

So, while it may not be the right path for everyone, it has definitely

proven to be the right path for me and a lot of people I call my friends.

Take good care and make sure that you keep searching for the path that

brings you relief and healing!

deano

> From: " hwpiatek " <hank@...>

> Reply-

> Date: Wed, 04 Dec 2002 22:02:12 -0000

>

> Subject: [ ] Re: Antibiotic treatments (AP)

>

>> Where do the AP Kooks get the 75% statistic? You

>> can't find credible research because it isn't there.

>> Just testimonials. R.E.

>

> [Moderator's note: For your information, the message that mentioned " AP Kooks "

> was posted by Ron , not me (Ron Dotson). Ron is not a moderator. If

> I recall correctly, Ron is a guitarist whose hands and fingers (and his

> ability to play the guitar) were very nearly permanently damaged because he

> stopped taking his regular PA drugs while he was on AP therapy; ie, the damage

> to his fingers occurred while he was on the AP treatment. --Ron Dotson]

>

December 5, 2002

This is all very good information Hank, but I would add that you don't have

to take Minocin. While minocin has been used successfully in the studies

noted and is the basis for Dr. Brown's research, there are many other

antibiotics that are just as effective or even more effective for some

individuals (for me the answer so far is Doxycycline...that's right, zit

meds!). Other are finding success with a combination of antibiotic and

antifungal/viral (especially our friends with Lyme disease). I'm glad to

hear you are doing better! Good luck keeping your patience here! I'm afraid

I don't have it.

Peace,

deano

> From: " hwpiatek " <hank@...>

> Reply-

> Date: Wed, 04 Dec 2002 16:55:46 -0000

>

> Subject: [ ] Antibiotic treatments (AP)

>

> How one takes antibiotic treatments (AP) is very important.

> -Use only pelletized versions of Minocycline (Made by Lederle,

> Wyeth, AHP)

December 5, 2002

> " How one takes antibiotic treatments (AP) is very important.

.....No food 2 hours before or after... "

I had bad stomach-aches when taking the minocin without food or when

I would lie down right after taking it. I was told that it's ok to

take it with food in that case -- absorption of the drug is reduced

by only 15% at most as a result. I'm take 100mg every day at lunch -

- & avoid foods with calcium (e.g dairy). I have no side effects at

all this way. It hasn't been long enough to tell whether it will

work yet -- but the intermittent, low dose Prednisone with Ibuprofen

has certainly worked wonders so far! I am 99% pain free for the

first time in 4 years. I had forgotten what it feels like to be a

normal human being, with energy, strength and no pain.

Sharon

December 5, 2002

Hi Sharon,

Even back a couple of years ago when I started taking Minocycline

myself, my rheumatologist openly agreed that antibiotics do exhibit a

small anti-inflammatory effect because they interfere with some

enzyme necessary for inflammation to occur, but she said it's such a

minor effect that antibiotics are not normally prescribed for that

purpose. At the time I wasn't much interested in her explanation

because I was convinced antibiotics worked because they were

killing " mycoplasma " bacteria, so I don't recall the details of her

explanation.

I also have seen studies in which antibiotics are purported to have

helped people with newly acquired PA. When I started antibiotics I

had already had PA for several years, so maybe that had something to

do with it. As long as you go into it objectively and are aware of

the risks, you will hopefully be Ok. In my opinion, the danger is

primarily to those who have " tunnel vision " regarding antibiotic

therapy, and persist in using it to the exclusion of all else even as

their joints deteriorate away to the point that so much damage has

been done nothing can help them any more.

Another thing to keep in mind is that not all DMARDS are created

equally. Even though I was on Sulfasalazine (which is classified as a

DMARD) for many years, it did me no good at all that I could see.

Furthermore, after reading hundreds of messages on this forum for the

past year or two from people who have used Sulfasalazine, I cannot

recall a SINGLE INDIVIDUAL who said they had any success with it. I

have to wonder why doctors even continue to prescribe it at all.

-- Ron

> Here's my two cents on the AP treatment:

>

> Minocycline is now officially listed as a DMARD by many

> reputable arthritis centres, including the main arthritis

> centre, Pack Centre, in Vancouver, where I live.

> However, it works best for early PA that is either mild to

> moderate or slow progressing. It's true that PA can be very

> damaging very quickly in some cases, so one must be very

> careful. I have had a relatively moderate case of PA for 4

> years that seems to be worsening in the last few months. Since

> I want to try the protocol (which usually takes 3 months to

> notice any effect and often has maximum benefit after 1

> year), I decided to try controlling my flares with

> intermittent, low dose prednisone, along with NSAIDs. This

> approach is working so far and my new rheumy tells me that

> prednisone is now thought to have a DMARD effect -- so I'll

> have less risk of damage while I'm trying the minocycline. As

> long as the prednisone is not causing side effects and the PA

> is under control, I plan to stay on the minocyclin. I know

> prednisone is not a long term solution, but it is acceptable

> to use it as a " bridge " while waiting to see if a DMARD

> works. In low intermittent doses the side effects are

> supposed to be minimal, which has been my experience so far.

> I'll let the group know how this works out...

>

> Sharon

December 8, 2002

Would you mind answering a question for me? When I called my rheumy last

week and asked if he would put me on the antibiotic treatment, he said that

there were safer things to try first. I've tried about ten different

NSAIDS, and that's all. What will he tell me to scare me off of the

antibiotic treatment? Thanks,

Cheryl

[ ] Antibiotic treatments (AP)

> What are the antibiotic treatments everyone talks about? I have

> never heard of this, and I am generally a pretty good researcher.

It only works for ~75% of those that use it. Ron must be in the

other 25%. Whether it works because it kills mycroplasma is beside

the point. It works and it's safer then any drug usually discussed

here. Antibiotic treatments (AP) do NOT: kill your liver-kidney,

bloat you like a balloon or make you susceptible to infections and

diseases.

I gradually stopped all other drugs 2 months ago and feel great. I

can put on socks without pain etc. I can kick my self for treating

only symptoms for 3 years using Methotrexate, Sulfasalazine,

Cortisone shots, etc.

Go to the " Polls " after you have signed up and see how AP has worked

for others at: rheumatic/

How one takes antibiotic treatments (AP) is very important.

-Use only pelletized versions of Minocycline (Made by Lederle,

Wyeth, AHP)

-No food 2 hours before or after

-Diet., plenty of water, yogurt or acidophilus pills

-I started at 50mg of Minocin every MTF and currently 100mg Mon thru

Fri. The IV protocols are for really bad cases. Find a Dr that

knows what to do.

-The above group has lists of Dr for every State that do AP.

American College of Rheumatology feels it is an effective treatment

option From their site http://www.rheumatology.org I have the

following links and subsequent quotations:

http://www.rheumatology.org/ar/1997/may97.html

" Because RA has been increasingly recognized as a disease with

significant morbidity and mortality and one in which irreversible

joint damage occurs early, there has been recent emphasis on early

aggressive treatment, despite limited data. This double-blind,

placebo-controlled study was undertaken to assess minocycline

treatment in rheumatoid factor-positive RA patients with disease

duration of [lt]1 year (average 5 months). The minocycline-treated

group improved dramatically (65% with [lt]50% improvement) compared

with placebo-treated patients (13% with [lt]50% improvement). If

these initial results can be confirmed, it would have a dramatic

impact on the way early RA is treated. "

http://www.rheumatology.org/ar/1999/aug99.html " Clinical Science

" 1691 Treatment of Early Seropositive Rheumatoid Arthritis with

Minocycline: Four-Year Follow-up of a Double-Blind, Placebo-

Controlled Trial

" R. O'Dell, Gail sen, E. Haire, Kent Blakely,

Palmer, Wees, P. Eckhoff, Lynell W. Klassen,

Melvin Churchill, Deborah Doud, Arthur Weaver, and Gerald F.

" This report describes long-term results (mean 4 years followup) in

RA patients who were treated with minocycline during the early part

of their disease. Compared with patients who had received placebo

rather than minocycline for 3 months during the early part of their

disease, the patients who had received minocycline had a

significantly higher frequency of improvement or remission. These

results indicate that minocycline, given early in the disease, is

effective in the treatment of RA. "

Please visit our Psoriatic Arthritis Group's informational web page at:

http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse

them at your convenience.

Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can

help you out with an educated guess for an answer. If not we can at least

steer you in the right direction with a good website to go to for the

answers.

Blessings and Peace,

Atwood-Stack, Founder

Alan , Web & List Editor

Jack , Newsletter Editor

Pat Bias, List Editor

Ron Dotson, List Editor

and many others who help moderate (thank you!)

December 9, 2002

Go to

rheumatic

and ask for a list of Dr in your state that do AP. Also read the

posts, recently they have been dealing with the same issues you

bring up.

Hank

> Would you mind answering a question for me? When I called my

rheumy last

> week and asked if he would put me on the antibiotic treatment, he

said that

> there were safer things to try first. I've tried about ten

different

> NSAIDS, and that's all. What will he tell me to scare me off of

the

> antibiotic treatment? Thanks,

> Cheryl

> [ ] Antibiotic treatments (AP)

>

> > What are the antibiotic treatments everyone talks about? I have

> > never heard of this, and I am generally a pretty good researcher.

>

> It only works for ~75% of those that use it. Ron must be in the

> other 25%. Whether it works because it kills mycroplasma is beside

> the point. It works and it's safer then any drug usually discussed

> here. Antibiotic treatments (AP) do NOT: kill your liver-kidney,

> bloat you like a balloon or make you susceptible to infections and

> diseases.

>

> I gradually stopped all other drugs 2 months ago and feel great. I

> can put on socks without pain etc. I can kick my self for treating

> only symptoms for 3 years using Methotrexate, Sulfasalazine,

> Cortisone shots, etc.

>

> Go to the " Polls " after you have signed up and see how AP has

worked

> for others at: rheumatic/

>

> How one takes antibiotic treatments (AP) is very important.

> -Use only pelletized versions of Minocycline (Made by Lederle,

> Wyeth, AHP)

> -No food 2 hours before or after

> -Diet., plenty of water, yogurt or acidophilus pills

> -I started at 50mg of Minocin every MTF and currently 100mg Mon

thru

> Fri. The IV protocols are for really bad cases. Find a Dr that

> knows what to do.

> -The above group has lists of Dr for every State that do AP.

>

> American College of Rheumatology feels it is an effective treatment

> option From their site http://www.rheumatology.org I have the

> following links and subsequent quotations:

>

> http://www.rheumatology.org/ar/1997/may97.html

> " Because RA has been increasingly recognized as a disease with

> significant morbidity and mortality and one in which irreversible

> joint damage occurs early, there has been recent emphasis on early

> aggressive treatment, despite limited data. This double-blind,

> placebo-controlled study was undertaken to assess minocycline

> treatment in rheumatoid factor-positive RA patients with disease

> duration of [lt]1 year (average 5 months). The minocycline-treated

> group improved dramatically (65% with [lt]50% improvement) compared

> with placebo-treated patients (13% with [lt]50% improvement). If

> these initial results can be confirmed, it would have a dramatic

> impact on the way early RA is treated. "

>

> http://www.rheumatology.org/ar/1999/aug99.html " Clinical Science

> " 1691 Treatment of Early Seropositive Rheumatoid Arthritis with

> Minocycline: Four-Year Follow-up of a Double-Blind, Placebo-

> Controlled Trial

> " R. O'Dell, Gail sen, E. Haire, Kent Blakely,

> Palmer, Wees, P. Eckhoff, Lynell W. Klassen,

> Melvin Churchill, Deborah Doud, Arthur Weaver, and Gerald F.

> " This report describes long-term results (mean 4 years followup) in

> RA patients who were treated with minocycline during the early part

> of their disease. Compared with patients who had received placebo

> rather than minocycline for 3 months during the early part of their

> disease, the patients who had received minocycline had a

> significantly higher frequency of improvement or remission. These

> results indicate that minocycline, given early in the disease, is

> effective in the treatment of RA. "

>

> Please visit our Psoriatic Arthritis Group's informational web

page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

> aka(raharris@y...).

>

> In August 2001 list member Jack aka(Cornishpro@a...)

began to

> conduct extensive research which he publishes as the Psoriatic

Arthritic

> Research Newsletter monthly in our emails and digest format. Many

thanks to

> Jack. Back issues of the newsletter are stored on our PA webpage.

>

> Also remember that the list archives comprise a tremendous amount

of

> information (Over two years of messages and answers).Feel free to

browse

> them at your convenience.

>

> Let's hear from some of you lurkers out there! If you have a

comment or

> question chances are there is a person who has been around a while

who can

> help you out with an educated guess for an answer. If not we can

at least

> steer you in the right direction with a good website to go to for

the

> answers.

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> and many others who help moderate (thank you!)

>

December 9, 2002

Hi Cheryl,

I had the same problem. My GP and rheumy were not receptive at all

to the antibiotic treatment. The GP had never heard of it and the

rheumy felt I should stay on NSAIDs only until bone changes showed in

my x-rays. He didn't seem to care that my pain was increasing and

more joints were becoming very inflamed. I now believe that kind of

thinking is outdated and dangerous. I finally found a new rheumy and

GP who are supportive, but it took some time. I was satisfied that

the antibiotic protocol was a reasonable option to try because it is

much less toxic than many of the other DMARDs and seems to work

wonders for some people. I persisted until I found doctors who would

support my choice. In my opinion, if you are in serious pain with

NSAIDs alone, you should definitely investigate the other

options/DMARDs.

Sharon

> Would you mind answering a question for me? When I called my

rheumy last

> week and asked if he would put me on the antibiotic treatment, he

said that

> there were safer things to try first. I've tried about ten

different

> NSAIDS, and that's all. What will he tell me to scare me off of the

> antibiotic treatment? Thanks,

> Cheryl

> [ ] Antibiotic treatments (AP)

>

> > What are the antibiotic treatments everyone talks about? I have

> > never heard of this, and I am generally a pretty good researcher.

>

> It only works for ~75% of those that use it. Ron must be in the

> other 25%. Whether it works because it kills mycroplasma is beside

> the point. It works and it's safer then any drug usually discussed

> here. Antibiotic treatments (AP) do NOT: kill your liver-kidney,

> bloat you like a balloon or make you susceptible to infections and

> diseases.

>

> I gradually stopped all other drugs 2 months ago and feel great. I

> can put on socks without pain etc. I can kick my self for treating

> only symptoms for 3 years using Methotrexate, Sulfasalazine,

> Cortisone shots, etc.

>

> Go to the " Polls " after you have signed up and see how AP has worked

> for others at: rheumatic/

>

> How one takes antibiotic treatments (AP) is very important.

> -Use only pelletized versions of Minocycline (Made by Lederle,

> Wyeth, AHP)

> -No food 2 hours before or after

> -Diet., plenty of water, yogurt or acidophilus pills

> -I started at 50mg of Minocin every MTF and currently 100mg Mon thru