Re: Question on your medications

[Guest guest]

...

Don't take this the wrong way...but I want to give you another side

of the story. I'm really glad antibiotics work for you...but I don't

want you to think all the other DMARDs are evil either...

I think every one of us has backed off and increased meds a million

times...Prednisone always goes up and down and eventually you can

come off altogether with any of the DMARDS, once they kick in...and

use of NSAIDs goes up and down with symptoms as well...

You can also decrease down to a lower dose of MTX or to Plaquenil,

gold, sulfasalazine until symptoms worsen again and you bump it back

up. Eventually, because of the waxing and waning of the disease,

they eventually require being upped again or having another drug

added...drugs also lose effect for no reason. The biologics are

different because there typically is a standard dose to acheive their

effect on receptors etc. Most of us who've had it for many years

like myself (15) have come to accept this as part of the disease.

Also remember that the antibiotics...minocycline I'm assuming you're

taking...work the same way the rest of the DMARDs do...despite all

the propaganda about bacteria...there are many studies saying the

tetracycline antibiotics are immune suppressing by themselves and the

effect has nothing to do with their antibiotic activity... so you're

really just making a different DMARD immune suppressing choice...I'm

sure has some of those articles available.

They also do have toxicity...A friend of mine has debilitating

Tinnitus (ringing in her ears)and dizziness from minocycline RA

therapy...permanent damage to her inner ear from the minocycline,

another person I know of had a bad skin/sun reaction from it where

her skin peeled off and she was in hospital for 6 weeks. I'm glad it

is working for you and I hope it continues and it isn't just a

natural remission coinciding with the drug... but no drug, antibiotic

or not is without risks.

just another side...

Lexi

> How many on here actually have been able to go from a higher dose

to a lower dose, or cut out meds without adding something else?

>

> I have been reading through the posts on this list, and over and

over I see people saying that they've increased their dosage of med,

or added new medications - all to just maintain. This seems like

auch a dead-end to me.

>

> This is one of the things that I looked into when I researched

treatment options after being diagnosed with RA. Which treatments

actually seemed to increase the possibility of LESS medications,

instead of more? Every single accounting I saw using methotrexate

and the other " typical " RA drugs showed an increase in drug use as

time progressed. The only protocol I saw that showed a decrease was

the use of antibiotics. People often started out on several drugs

and eventually became able to be on only the antibiotic. This is why

I chose this treatment, although I will fully admit it's not as quick

to work as some of the others. In addition, the risk of side effects

is less.

>

> I know I sound like I'm pushing this protocol, but I just see so

many people going down a difficult path with medications that require

other medications to deal with the side effects - and it just seems

to get worse instead of better. I'm just seven months into this, but

I'm already starting to cut back on some of the meds - now I'm just

on prednisone (every other day) and antibiotics as I've just dropped

the plaquenil. We'll see how it goes. My next step is to try to

back off of the prednisone. I went from being almost completely

bedridden this winter and on constant pain meds to being relatively

active. I still hurt at times. I use advil every couple of days and

on rare occasion something stronger. But I'm determined to give the

antibiotics a good try before I resort to the more dangerous drugs.

I really encourage everyone to look into this treatment, and to find

a doctor willing to at least look into it with you. Any

rheumatologist or doctor who immediately shrugs off a treatment that

has worked successfully for a large number of people, is a doctor who

either is close-minded or sadly behind the times (or paid by the

manufacturers of the drugs they promote).

>

> Okay, off my soapbox .. *L* .. whatever you're all on, I wish you

all the best and many pain-free days ahead!

>

> in Alaska

>

>

>

>

[Guest guest]

...

Don't take this the wrong way...but I want to give you another side

of the story. I'm really glad antibiotics work for you...but I don't

want you to think all the other DMARDs are evil either...

I think every one of us has backed off and increased meds a million

times...Prednisone always goes up and down and eventually you can

come off altogether with any of the DMARDS, once they kick in...and

use of NSAIDs goes up and down with symptoms as well...

You can also decrease down to a lower dose of MTX or to Plaquenil,

gold, sulfasalazine until symptoms worsen again and you bump it back

up. Eventually, because of the waxing and waning of the disease,

they eventually require being upped again or having another drug

added...drugs also lose effect for no reason. The biologics are

different because there typically is a standard dose to acheive their

effect on receptors etc. Most of us who've had it for many years

like myself (15) have come to accept this as part of the disease.

Also remember that the antibiotics...minocycline I'm assuming you're

taking...work the same way the rest of the DMARDs do...despite all

the propaganda about bacteria...there are many studies saying the

tetracycline antibiotics are immune suppressing by themselves and the

effect has nothing to do with their antibiotic activity... so you're

really just making a different DMARD immune suppressing choice...I'm

sure has some of those articles available.

They also do have toxicity...A friend of mine has debilitating

Tinnitus (ringing in her ears)and dizziness from minocycline RA

therapy...permanent damage to her inner ear from the minocycline,

another person I know of had a bad skin/sun reaction from it where

her skin peeled off and she was in hospital for 6 weeks. I'm glad it

is working for you and I hope it continues and it isn't just a

natural remission coinciding with the drug... but no drug, antibiotic

or not is without risks.

just another side...

Lexi

> How many on here actually have been able to go from a higher dose

to a lower dose, or cut out meds without adding something else?

>

> I have been reading through the posts on this list, and over and

over I see people saying that they've increased their dosage of med,

or added new medications - all to just maintain. This seems like

auch a dead-end to me.

>

> This is one of the things that I looked into when I researched

treatment options after being diagnosed with RA. Which treatments

actually seemed to increase the possibility of LESS medications,

instead of more? Every single accounting I saw using methotrexate

and the other " typical " RA drugs showed an increase in drug use as

time progressed. The only protocol I saw that showed a decrease was

the use of antibiotics. People often started out on several drugs

and eventually became able to be on only the antibiotic. This is why

I chose this treatment, although I will fully admit it's not as quick

to work as some of the others. In addition, the risk of side effects

is less.

>

> I know I sound like I'm pushing this protocol, but I just see so

many people going down a difficult path with medications that require

other medications to deal with the side effects - and it just seems

to get worse instead of better. I'm just seven months into this, but

I'm already starting to cut back on some of the meds - now I'm just

on prednisone (every other day) and antibiotics as I've just dropped

the plaquenil. We'll see how it goes. My next step is to try to

back off of the prednisone. I went from being almost completely

bedridden this winter and on constant pain meds to being relatively

active. I still hurt at times. I use advil every couple of days and

on rare occasion something stronger. But I'm determined to give the

antibiotics a good try before I resort to the more dangerous drugs.

I really encourage everyone to look into this treatment, and to find

a doctor willing to at least look into it with you. Any

rheumatologist or doctor who immediately shrugs off a treatment that

has worked successfully for a large number of people, is a doctor who

either is close-minded or sadly behind the times (or paid by the

manufacturers of the drugs they promote).

>

> Okay, off my soapbox .. *L* .. whatever you're all on, I wish you

all the best and many pain-free days ahead!

>

> in Alaska

>

>

>

>

[Guest guest]

--- <trickers@...> wrote:

> How many on here actually have been able to go from

> a higher dose to a lower dose, or cut out meds

> without adding something else?

>

> I have been reading through the posts on this list,

> and over and over I see people saying that they've

> increased their dosage of med, or added new

> medications - all to just maintain. This seems like

> auch a dead-end to me.

>

> This is one of the things that I looked into when I

> researched treatment options after being diagnosed

> with RA. Which treatments actually seemed to

> increase the possibility of LESS medications,

> instead of more? Every single accounting I saw

> using methotrexate and the other " typical " RA drugs

> showed an increase in drug use as time progressed.

> The only protocol I saw that showed a decrease was

> the use of antibiotics. People often started out on

> several drugs and eventually became able to be on

> only the antibiotic. This is why I chose this

> treatment, although I will fully admit it's not as

> quick to work as some of the others. In addition,

> the risk of side effects is less.

>

> I know I sound like I'm pushing this protocol, but I

> just see so many people going down a difficult path

> with medications that require other medications to

> deal with the side effects - and it just seems to

> get worse instead of better. I'm just seven months

> into this, but I'm already starting to cut back on

> some of the meds - now I'm just on prednisone (every

> other day) and antibiotics as I've just dropped the

> plaquenil. We'll see how it goes. My next step is

> to try to back off of the prednisone. I went from

> being almost completely bedridden this winter and on

> constant pain meds to being relatively active. I

> still hurt at times. I use advil every couple of

> days and on rare occasion something stronger. But

> I'm determined to give the antibiotics a good try

> before I resort to the more dangerous drugs. I

> really encourage everyone to look into this

> treatment, and to find a doctor willing to at least

> look into it with you. Any rheumatologist or doctor

> who immediately shrugs off a treatment that has

> worked successfully for a large number of people, is

> a doctor who either is close-minded or sadly behind

> the times (or paid by the manufacturers of the drugs

> they promote).

>

> Okay, off my soapbox .. *L* .. whatever you're all

> on, I wish you all the best and many pain-free days

> ahead!

>

> in Alaska

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

> , Glad to hear that antibiotics are helping

and that you are able to cut back on other meds. What

have your labs (sed rate, crp) done while on this

treatment? I just recently started minocycline and

reduced my mtx because of side effects and would love

to stop it altogether but have had some success with

mtx so for now I am continuing but at a smaller dose.

__________________________________________________

[Guest guest]

--- <trickers@...> wrote:

> How many on here actually have been able to go from

> a higher dose to a lower dose, or cut out meds

> without adding something else?

>

> I have been reading through the posts on this list,

> and over and over I see people saying that they've

> increased their dosage of med, or added new

> medications - all to just maintain. This seems like

> auch a dead-end to me.

>

> This is one of the things that I looked into when I

> researched treatment options after being diagnosed

> with RA. Which treatments actually seemed to

> increase the possibility of LESS medications,

> instead of more? Every single accounting I saw

> using methotrexate and the other " typical " RA drugs

> showed an increase in drug use as time progressed.

> The only protocol I saw that showed a decrease was

> the use of antibiotics. People often started out on

> several drugs and eventually became able to be on

> only the antibiotic. This is why I chose this

> treatment, although I will fully admit it's not as

> quick to work as some of the others. In addition,

> the risk of side effects is less.

>

> I know I sound like I'm pushing this protocol, but I

> just see so many people going down a difficult path

> with medications that require other medications to

> deal with the side effects - and it just seems to

> get worse instead of better. I'm just seven months

> into this, but I'm already starting to cut back on

> some of the meds - now I'm just on prednisone (every

> other day) and antibiotics as I've just dropped the

> plaquenil. We'll see how it goes. My next step is

> to try to back off of the prednisone. I went from

> being almost completely bedridden this winter and on

> constant pain meds to being relatively active. I

> still hurt at times. I use advil every couple of

> days and on rare occasion something stronger. But

> I'm determined to give the antibiotics a good try

> before I resort to the more dangerous drugs. I

> really encourage everyone to look into this

> treatment, and to find a doctor willing to at least

> look into it with you. Any rheumatologist or doctor

> who immediately shrugs off a treatment that has

> worked successfully for a large number of people, is

> a doctor who either is close-minded or sadly behind

> the times (or paid by the manufacturers of the drugs

> they promote).

>

> Okay, off my soapbox .. *L* .. whatever you're all

> on, I wish you all the best and many pain-free days

> ahead!

>

> in Alaska

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

> , Glad to hear that antibiotics are helping

and that you are able to cut back on other meds. What

have your labs (sed rate, crp) done while on this

treatment? I just recently started minocycline and

reduced my mtx because of side effects and would love

to stop it altogether but have had some success with

mtx so for now I am continuing but at a smaller dose.

__________________________________________________

[Guest guest]

In a message dated 8/31/2005 6:13:59 A.M. Eastern Daylight Time,

writes:

Question on your medications

Hi ... obviously you are passionate about your treatment options and

have educated yourself on the possibilities. I can relate to your passion

and good intentions to share what has worked for you. Enthusiasm can be very

contagious! There is also healing in truly believing in your medical

treatment -- sometimes attitude is everything. Thank you for sharing your

enthusiasm -- I know it benefits whomever it is meant to affect! :-)

I have also learned that we are all so very unique (and most of us are also

informed and educated about this RA condition). Our road to healing is very

individual and can be different day-to-day. People are really doing the best

they can with what they have in any given moment and healing can look like

different things to people. Sometimes it isn't simply " one day at a time " but

rather " one minute at a time " .

and a, thanks, as always for the excellent resources and

information you share! , again, thanks for your sharing as well!

Love and Prayers,

Beth

~*~*~*~*~*~*~*~*

PS. If what I wrote about above resonates with you, more thoughts like these

can be found in my Think Big About Healing: 12 Heroic Principles to

Reclaiming Your Spirited Self. A F*REE e-course for Big Thinkers (and

WannaBes!).

Sign up at www.InnerPeaceProject.com. It's totally f*ree and was written really

to help me help myself! Go figure. :-)

~*~*~*~*~*~*~*~*

[Guest guest]

In a message dated 8/31/2005 6:13:59 A.M. Eastern Daylight Time,

writes:

Question on your medications

Hi ... obviously you are passionate about your treatment options and

have educated yourself on the possibilities. I can relate to your passion

and good intentions to share what has worked for you. Enthusiasm can be very

contagious! There is also healing in truly believing in your medical

treatment -- sometimes attitude is everything. Thank you for sharing your

enthusiasm -- I know it benefits whomever it is meant to affect! :-)

I have also learned that we are all so very unique (and most of us are also

informed and educated about this RA condition). Our road to healing is very

individual and can be different day-to-day. People are really doing the best

they can with what they have in any given moment and healing can look like

different things to people. Sometimes it isn't simply " one day at a time " but

rather " one minute at a time " .

and a, thanks, as always for the excellent resources and

information you share! , again, thanks for your sharing as well!

Love and Prayers,

Beth

~*~*~*~*~*~*~*~*

PS. If what I wrote about above resonates with you, more thoughts like these

can be found in my Think Big About Healing: 12 Heroic Principles to

Reclaiming Your Spirited Self. A F*REE e-course for Big Thinkers (and

WannaBes!).

Sign up at www.InnerPeaceProject.com. It's totally f*ree and was written really

to help me help myself! Go figure. :-)

~*~*~*~*~*~*~*~*

[Guest guest]

Hi -

Thanks for the response.

I've never once said that antibiotics have no potential side effects.

Everything you take has potential side effects, and that includes " natural "

supplements, holistic treatments, all drugs and even all foods. But all

potential side effects should be carefully considered and then a course of

action be logically accepted. I'm pretty sure that a number of people out there

are going along with whatever their doctors are suggesting, even though those

doctors are not always willing to look at all possibliities.

I personally don't know anyone who has " backed off and increased meds a million

times " . I didn't find that you answered my question either - I asked if anyone

had been able to go from a higher dose to a lower dose, or cut out meds without

replacing them with something else. I would think that the goal of most people

is 1) to feel better, and 2) to do it on the least amount of drugs possible. I

would encourage everyone to research every possible treatment, and not just go

with what their doctors may be offering. Since we're all on this email list, it

stands to reason that we all have access to the internet overall and there is a

LOT of information available. You can find studies to back up whichever belief

you choose to follow, but I've talked to numerous people who have used various

treatments and overall the antibiotic protocol seems to have a much higher rate

of long-term " remission " with the fewest number of side effects.

By the way, I'm not on minocycline. The majority of studies I've seen on the

use of antibiotics didn't attribute the effect of the drug as an immune

suppressant - once in awhile I'll run across one of those studies, but for the

most part the indications are based on the antibiotic activity. You may call

the RA/bacterial connection " propaganda " but that, of course, is just your

opinion as the connection has not been disproven. What I AM impressed with is

the number of people who have given me their background in RA who have had great

success with the use of antibiotics - eventually diminishing the amount of drugs

they're taking until they are maintained on a low dose of antibiotic. You just

don't seem to see that much with the other drugs.

No one is going to be forced to try antibiotics just because I'm recommending

that they look into this treatment. But I do hope that this information will

help some consider it. Granted, it appears to help better if you start it early

in the disease, but I've talked to several people who have started years into RA

and still had good results.

Best of luck to everyone, regardless of what they're trying for treatment -

in Alaska

----- Original Message -----

From: andra

...

Don't take this the wrong way...but I want to give you another side

of the story. I'm really glad antibiotics work for you...but I don't

want you to think all the other DMARDs are evil either...

I think every one of us has backed off and increased meds a million

times...Prednisone always goes up and down and eventually you can

come off altogether with any of the DMARDS, once they kick in...and

use of NSAIDs goes up and down with symptoms as well...

You can also decrease down to a lower dose of MTX or to Plaquenil,

gold, sulfasalazine until symptoms worsen again and you bump it back

up. Eventually, because of the waxing and waning of the disease,

they eventually require being upped again or having another drug

added...drugs also lose effect for no reason. The biologics are

different because there typically is a standard dose to acheive their

effect on receptors etc. Most of us who've had it for many years

like myself (15) have come to accept this as part of the disease.

Also remember that the antibiotics...minocycline I'm assuming you're

taking...work the same way the rest of the DMARDs do...despite all

the propaganda about bacteria...there are many studies saying the

tetracycline antibiotics are immune suppressing by themselves and the

effect has nothing to do with their antibiotic activity... so you're

really just making a different DMARD immune suppressing choice...I'm

sure has some of those articles available.

They also do have toxicity...A friend of mine has debilitating

Tinnitus (ringing in her ears)and dizziness from minocycline RA

therapy...permanent damage to her inner ear from the minocycline,

another person I know of had a bad skin/sun reaction from it where

her skin peeled off and she was in hospital for 6 weeks. I'm glad it

is working for you and I hope it continues and it isn't just a

natural remission coinciding with the drug... but no drug, antibiotic

or not is without risks.

just another side...

Lexi

[Guest guest]

Hi -

Thanks for the response.

I've never once said that antibiotics have no potential side effects.

Everything you take has potential side effects, and that includes " natural "

supplements, holistic treatments, all drugs and even all foods. But all

potential side effects should be carefully considered and then a course of

action be logically accepted. I'm pretty sure that a number of people out there

are going along with whatever their doctors are suggesting, even though those

doctors are not always willing to look at all possibliities.

I personally don't know anyone who has " backed off and increased meds a million

times " . I didn't find that you answered my question either - I asked if anyone

had been able to go from a higher dose to a lower dose, or cut out meds without

replacing them with something else. I would think that the goal of most people

is 1) to feel better, and 2) to do it on the least amount of drugs possible. I

would encourage everyone to research every possible treatment, and not just go

with what their doctors may be offering. Since we're all on this email list, it

stands to reason that we all have access to the internet overall and there is a

LOT of information available. You can find studies to back up whichever belief

you choose to follow, but I've talked to numerous people who have used various

treatments and overall the antibiotic protocol seems to have a much higher rate

of long-term " remission " with the fewest number of side effects.

By the way, I'm not on minocycline. The majority of studies I've seen on the

use of antibiotics didn't attribute the effect of the drug as an immune

suppressant - once in awhile I'll run across one of those studies, but for the

most part the indications are based on the antibiotic activity. You may call

the RA/bacterial connection " propaganda " but that, of course, is just your

opinion as the connection has not been disproven. What I AM impressed with is

the number of people who have given me their background in RA who have had great

success with the use of antibiotics - eventually diminishing the amount of drugs

they're taking until they are maintained on a low dose of antibiotic. You just

don't seem to see that much with the other drugs.

No one is going to be forced to try antibiotics just because I'm recommending

that they look into this treatment. But I do hope that this information will

help some consider it. Granted, it appears to help better if you start it early

in the disease, but I've talked to several people who have started years into RA

and still had good results.

Best of luck to everyone, regardless of what they're trying for treatment -

in Alaska

----- Original Message -----

From: andra

...

Don't take this the wrong way...but I want to give you another side

of the story. I'm really glad antibiotics work for you...but I don't

want you to think all the other DMARDs are evil either...

I think every one of us has backed off and increased meds a million

times...Prednisone always goes up and down and eventually you can

come off altogether with any of the DMARDS, once they kick in...and

use of NSAIDs goes up and down with symptoms as well...

You can also decrease down to a lower dose of MTX or to Plaquenil,

gold, sulfasalazine until symptoms worsen again and you bump it back

up. Eventually, because of the waxing and waning of the disease,

they eventually require being upped again or having another drug

added...drugs also lose effect for no reason. The biologics are

different because there typically is a standard dose to acheive their

effect on receptors etc. Most of us who've had it for many years

like myself (15) have come to accept this as part of the disease.

Also remember that the antibiotics...minocycline I'm assuming you're

taking...work the same way the rest of the DMARDs do...despite all

the propaganda about bacteria...there are many studies saying the

tetracycline antibiotics are immune suppressing by themselves and the

effect has nothing to do with their antibiotic activity... so you're

really just making a different DMARD immune suppressing choice...I'm

sure has some of those articles available.

They also do have toxicity...A friend of mine has debilitating

Tinnitus (ringing in her ears)and dizziness from minocycline RA

therapy...permanent damage to her inner ear from the minocycline,

another person I know of had a bad skin/sun reaction from it where

her skin peeled off and she was in hospital for 6 weeks. I'm glad it

is working for you and I hope it continues and it isn't just a

natural remission coinciding with the drug... but no drug, antibiotic

or not is without risks.

just another side...

Lexi

[Guest guest]

Whoops, sorry .. I'm not sure why I addressed that last post to instead of

Lexi - I think it was because I had just read one of the studies sent to the

list by . My apologies for the mistake!

in Alaska

[Guest guest]

Whoops, sorry .. I'm not sure why I addressed that last post to instead of

Lexi - I think it was because I had just read one of the studies sent to the

list by . My apologies for the mistake!

in Alaska

[Guest guest]

,

Obviously you took offense, which I specifically intended you NOT to

and now I'm offended.

You made an informed choice for yourself ...and you are very happy

with it...but there was some information in your letter that made me

want to share my friends' experiences with antibiotics for the

benefit of anyone else who may be considering it. One of the purposes

of this forum is to provide information so that people don't have to

go too far to get it.

I wanted to allay the insinuation that the other medications are

worse or couldn't be decreased or couldn't maintain a remission.

In fact, I did answer your question...when I said backing off.. I

meant taking a lower dose of the medication and backing of or

lowering the dose. I have friends who manage on 1 plaquenil every

day, MTX 5mg weekly, sulfasalazine 1/2 pill twice daily etc but most

of us eventually have to re-adjust at some point. I hope to God you

never do and that this works for you forever...I hope that for

anyone. But, in 15 years, I've known A LOT of RA patients, and heard

a lot of stories, you've only had a comparatively short time and have

said how hard it is to find people in your situation.

Again, I'm not arguing with your choice...as the information

and a provided, antibiotics DO work in many cases but there IS a

lot of heavily pushed " propaganda " out there, whether or not you were

exposed to it, i don't know, I just wanted to call attention to it.

There ARE books telling people that it is all because of bacterial

and fungal infections and that it is easily CURED by antibiotics.

This disease can't be cured. I " googled " it today and in the first

4 pages of results, I came across 10 that said antibiotics would CURE

RA. and that their doctors aren't treating them properly etc.

I am a scientist...and I work for the government. I know about

gathering info and spinning it into what you want or need!!!

I need to point out that there are a lot of studies out there that

you can use to back any opinion, on any drug/disease etc...but where

the studies are found and the reputation and circulation of the

journals are important. Everyone out there who is making a decision

on therapy may not be able to tell the difference. That's why people

print a lot of things on the internet, because they don't have to be

peer reviewed or go through a lot of acceptance procedures or even be

printed in their entirety or with references. I believe the current

consensus in most reputable medical journals and scientific magazines

is that antibiotics work in RA by immune suppression.

I DO believe antibiotic therapy IS a choice, as is traditional

therapy, herbal therapy, chinese remedies, homeopathy, etc.

Thanks everyone for letting me babble on.

Lexi

> Hi -

>

> Thanks for the response.

>

> I've never once said that antibiotics have no potential side

effects. Everything you take has potential side effects, and that

includes " natural " supplements, holistic treatments, all drugs and

even all foods. But all potential side effects should be carefully

considered and then a course of action be logically accepted. I'm

pretty sure that a number of people out there are going along with

whatever their doctors are suggesting, even though those doctors are

not always willing to look at all possibliities.

>

> I personally don't know anyone who has " backed off and increased

meds a million times " . I didn't find that you answered my question

either - I asked if anyone had been able to go from a higher dose to

a lower dose, or cut out meds without replacing them with something

else. I would think that the goal of most people is 1) to feel

better, and 2) to do it on the least amount of drugs possible. I

would encourage everyone to research every possible treatment, and

not just go with what their doctors may be offering. Since we're all

on this email list, it stands to reason that we all have access to

the internet overall and there is a LOT of information available.

You can find studies to back up whichever belief you choose to

follow, but I've talked to numerous people who have used various

treatments and overall the antibiotic protocol seems to have a much

higher rate of long-term " remission " with the fewest number of side

effects.

>

> By the way, I'm not on minocycline. The majority of studies I've

seen on the use of antibiotics didn't attribute the effect of the

drug as an immune suppressant - once in awhile I'll run across one of

those studies, but for the most part the indications are based on the

antibiotic activity. You may call the RA/bacterial

connection " propaganda " but that, of course, is just your opinion as

the connection has not been disproven. What I AM impressed with is

the number of people who have given me their background in RA who

have had great success with the use of antibiotics - eventually

diminishing the amount of drugs they're taking until they are

maintained on a low dose of antibiotic. You just don't seem to see

that much with the other drugs.

>

> No one is going to be forced to try antibiotics just because I'm

recommending that they look into this treatment. But I do hope that

this information will help some consider it. Granted, it appears to

help better if you start it early in the disease, but I've talked to

several people who have started years into RA and still had good

results.

>

> Best of luck to everyone, regardless of what they're trying for

treatment -

>

> in Alaska

>

>

>

[Guest guest]

,

Obviously you took offense, which I specifically intended you NOT to

and now I'm offended.

You made an informed choice for yourself ...and you are very happy

with it...but there was some information in your letter that made me

want to share my friends' experiences with antibiotics for the

benefit of anyone else who may be considering it. One of the purposes

of this forum is to provide information so that people don't have to

go too far to get it.

I wanted to allay the insinuation that the other medications are

worse or couldn't be decreased or couldn't maintain a remission.

In fact, I did answer your question...when I said backing off.. I

meant taking a lower dose of the medication and backing of or

lowering the dose. I have friends who manage on 1 plaquenil every

day, MTX 5mg weekly, sulfasalazine 1/2 pill twice daily etc but most

of us eventually have to re-adjust at some point. I hope to God you

never do and that this works for you forever...I hope that for

anyone. But, in 15 years, I've known A LOT of RA patients, and heard

a lot of stories, you've only had a comparatively short time and have

said how hard it is to find people in your situation.

Again, I'm not arguing with your choice...as the information

and a provided, antibiotics DO work in many cases but there IS a

lot of heavily pushed " propaganda " out there, whether or not you were

exposed to it, i don't know, I just wanted to call attention to it.

There ARE books telling people that it is all because of bacterial

and fungal infections and that it is easily CURED by antibiotics.

This disease can't be cured. I " googled " it today and in the first

4 pages of results, I came across 10 that said antibiotics would CURE

RA. and that their doctors aren't treating them properly etc.

I am a scientist...and I work for the government. I know about

gathering info and spinning it into what you want or need!!!

I need to point out that there are a lot of studies out there that

you can use to back any opinion, on any drug/disease etc...but where

the studies are found and the reputation and circulation of the

journals are important. Everyone out there who is making a decision

on therapy may not be able to tell the difference. That's why people

print a lot of things on the internet, because they don't have to be

peer reviewed or go through a lot of acceptance procedures or even be

printed in their entirety or with references. I believe the current

consensus in most reputable medical journals and scientific magazines

is that antibiotics work in RA by immune suppression.

I DO believe antibiotic therapy IS a choice, as is traditional

therapy, herbal therapy, chinese remedies, homeopathy, etc.

Thanks everyone for letting me babble on.

Lexi

> Hi -

>

> Thanks for the response.

>

> I've never once said that antibiotics have no potential side

effects. Everything you take has potential side effects, and that

includes " natural " supplements, holistic treatments, all drugs and

even all foods. But all potential side effects should be carefully

considered and then a course of action be logically accepted. I'm

pretty sure that a number of people out there are going along with

whatever their doctors are suggesting, even though those doctors are

not always willing to look at all possibliities.

>

> I personally don't know anyone who has " backed off and increased

meds a million times " . I didn't find that you answered my question

either - I asked if anyone had been able to go from a higher dose to

a lower dose, or cut out meds without replacing them with something

else. I would think that the goal of most people is 1) to feel

better, and 2) to do it on the least amount of drugs possible. I

would encourage everyone to research every possible treatment, and

not just go with what their doctors may be offering. Since we're all

on this email list, it stands to reason that we all have access to

the internet overall and there is a LOT of information available.

You can find studies to back up whichever belief you choose to

follow, but I've talked to numerous people who have used various

treatments and overall the antibiotic protocol seems to have a much

higher rate of long-term " remission " with the fewest number of side

effects.

>

> By the way, I'm not on minocycline. The majority of studies I've

seen on the use of antibiotics didn't attribute the effect of the

drug as an immune suppressant - once in awhile I'll run across one of

those studies, but for the most part the indications are based on the

antibiotic activity. You may call the RA/bacterial

connection " propaganda " but that, of course, is just your opinion as

the connection has not been disproven. What I AM impressed with is

the number of people who have given me their background in RA who

have had great success with the use of antibiotics - eventually

diminishing the amount of drugs they're taking until they are

maintained on a low dose of antibiotic. You just don't seem to see

that much with the other drugs.

>

> No one is going to be forced to try antibiotics just because I'm

recommending that they look into this treatment. But I do hope that

this information will help some consider it. Granted, it appears to

help better if you start it early in the disease, but I've talked to

several people who have started years into RA and still had good

results.

>

> Best of luck to everyone, regardless of what they're trying for

treatment -

>

> in Alaska

>

>

>