Re: Medications - Misc. Responses

[Guest guest]

Hi all -

Just catching up on emails. I'm glad that some of you found my post on

medications and use of antibiotics interesting. I want everyone to know that I

don't have any financial interest in the antibiotic companies - I just have a

firm belief that the antibiotic protocol is a valid way to go.

I do feel lucky that I started on the antibiotics within a few weeks of

diagnosis (and that I was diagnosed quickly). But it's never too late to start

antibiotic therapy. I've talked with a number of people who started it years

after they first were diagnosed with RA (and other rheumatic diseases - this is

a therapy used for a variety of diseases). It does take awhile to work, and

it's best to start early. But better late than never, I think. Given the

number of people I see talking about how they're having to increase the dosage

on their meds, or add new ones as the old ones don't seem to be working, it

seems that considering the antibiotic protocol (AP) would be very valid.

The way I understand the AP is that it goes after bacteria in the joints.

There's a growing belief that much of the RA symptoms are caused by an infection

(bacterial or maybe viral). By using an antibiotic that is known to go into the

joints, the bacteria that could be causing the inflammation and development of

the disease are destroyed. This is a simplistic explanation, of course, and

there's much more to it than this. But what I do know is that this treatment

works for a large number of people, and that many of them get to a point where

they are maintained *symptom-free* for often years with nothing but a small

maintenance dose of antibiotic. No prednisone, no methotrexate, no plaquenil,

no humirex, no enbrel - just a small (often 3X a week) dose of antibiotic.

There are specific antibiotics that work for this. They need to be in the

tetracycline group. I am on doxycycline, although minocycline (minocin) is said

to be the best to use. Someone commented on not wanting to go on massive doses

of antibiotics - well, it's not generally a massive dose. It's typical to be on

100mg a day, once a day, with some people needing 100mg twice a day. I am on

100mg once a day. Maintenance dose, like I said, is often 100mg 3X a week.

I did have to go on prednisone because I needed to reduce the swelling in my

joints. If the joints are too inflamed, it becomes difficult for the antibiotic

to get into the joints to do the work they need to do. In addition, as the

antibiotic is working, you can go through some pretty rough times as the

bacteria releases toxins into your system. They call these flares

" Jarisch-Herxheimer Reactions " and they aren't much fun. But then again, what

IS fun about this disease?

I also chose (and it WAS my choice, as all treatment should be our choice) to go

on plaquenil. I did this because I wanted to help reduce the possibility of

joint damage while giving the antibiotic time to work. I will cut back or

eliminate the plaquenil as soon as I can, and I'm already on an every other day

low dose of prednisone. I can see improvement overall, and definitely from this

winter when I was nearly bedridden.

One of the nice side effects of the AP is that I don't have much risk of

infection. In the seven months I've been on the antibiotics, I've had no colds,

flu, or anything else although I am around people all the time (and people who

are coming here from all over the U.S. as I work at a fishing lodge). Unlike

the other meds that depress the immune system, I'm keeping mine relatively

strong throughout this. There are relatively few side effects to the

medication. And I just heard on the radio yesterday that doxycycline is one of

the antibiotics prescribed for anthrax, so I'm probably even safe there! *L*

I would really recommend that people at least look into this kind of treatment.

It may not be for everyone, but I can't see how it could be worse than the drugs

many of you are taking now. So many of those who tried the AP are in remission

(as they describe it). I dream of the days when I can do well on just a low

dose of antibiotic.

and the gang in Alaska

[Guest guest]

Hi all -

Just catching up on emails. I'm glad that some of you found my post on

medications and use of antibiotics interesting. I want everyone to know that I

don't have any financial interest in the antibiotic companies - I just have a

firm belief that the antibiotic protocol is a valid way to go.

I do feel lucky that I started on the antibiotics within a few weeks of

diagnosis (and that I was diagnosed quickly). But it's never too late to start

antibiotic therapy. I've talked with a number of people who started it years

after they first were diagnosed with RA (and other rheumatic diseases - this is

a therapy used for a variety of diseases). It does take awhile to work, and

it's best to start early. But better late than never, I think. Given the

number of people I see talking about how they're having to increase the dosage

on their meds, or add new ones as the old ones don't seem to be working, it

seems that considering the antibiotic protocol (AP) would be very valid.

The way I understand the AP is that it goes after bacteria in the joints.

There's a growing belief that much of the RA symptoms are caused by an infection

(bacterial or maybe viral). By using an antibiotic that is known to go into the

joints, the bacteria that could be causing the inflammation and development of

the disease are destroyed. This is a simplistic explanation, of course, and

there's much more to it than this. But what I do know is that this treatment

works for a large number of people, and that many of them get to a point where

they are maintained *symptom-free* for often years with nothing but a small

maintenance dose of antibiotic. No prednisone, no methotrexate, no plaquenil,

no humirex, no enbrel - just a small (often 3X a week) dose of antibiotic.

There are specific antibiotics that work for this. They need to be in the

tetracycline group. I am on doxycycline, although minocycline (minocin) is said

to be the best to use. Someone commented on not wanting to go on massive doses

of antibiotics - well, it's not generally a massive dose. It's typical to be on

100mg a day, once a day, with some people needing 100mg twice a day. I am on

100mg once a day. Maintenance dose, like I said, is often 100mg 3X a week.

I did have to go on prednisone because I needed to reduce the swelling in my

joints. If the joints are too inflamed, it becomes difficult for the antibiotic

to get into the joints to do the work they need to do. In addition, as the

antibiotic is working, you can go through some pretty rough times as the

bacteria releases toxins into your system. They call these flares

" Jarisch-Herxheimer Reactions " and they aren't much fun. But then again, what

IS fun about this disease?

I also chose (and it WAS my choice, as all treatment should be our choice) to go

on plaquenil. I did this because I wanted to help reduce the possibility of

joint damage while giving the antibiotic time to work. I will cut back or

eliminate the plaquenil as soon as I can, and I'm already on an every other day

low dose of prednisone. I can see improvement overall, and definitely from this

winter when I was nearly bedridden.

One of the nice side effects of the AP is that I don't have much risk of

infection. In the seven months I've been on the antibiotics, I've had no colds,

flu, or anything else although I am around people all the time (and people who

are coming here from all over the U.S. as I work at a fishing lodge). Unlike

the other meds that depress the immune system, I'm keeping mine relatively

strong throughout this. There are relatively few side effects to the

medication. And I just heard on the radio yesterday that doxycycline is one of

the antibiotics prescribed for anthrax, so I'm probably even safe there! *L*

I would really recommend that people at least look into this kind of treatment.

It may not be for everyone, but I can't see how it could be worse than the drugs

many of you are taking now. So many of those who tried the AP are in remission

(as they describe it). I dream of the days when I can do well on just a low

dose of antibiotic.

and the gang in Alaska

[Guest guest]

, I have been reading soom on AP but find

limited information. Also as options my rheumy has

never mentioned it but has mentioned humira, embrel, &

plaquenil. I'm currently on mtx, folic acid. He

keeps increasing the dosage and my labs look better

but the fatique level isn't acceptable and with the

last increase my hair is falling out by the

handfuls-unacceptable. So I've reduced my dosage back

down to half what he wants me on and started back with

very low dosage decadron. I plan to call him tomorrow

and let him know what I've done. I am looking for

other options and right now AP sounds better to me

than humira or embrel. I think they are wonderful

drugs but not for me at this point. I may get there

but not yet. If you have good web sites with info I

would be interested in researching AP further. I did

go to the one listed in your post but would like more.

Thanks,

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

> Hi all -

>

> Just catching up on emails. I'm glad that some of

> you found my post on medications and use of

> antibiotics interesting. I want everyone to know

> that I don't have any financial interest in the

> antibiotic companies - I just have a firm belief

> that the antibiotic protocol is a valid way to go.

>

> I do feel lucky that I started on the antibiotics

> within a few weeks of diagnosis (and that I was

> diagnosed quickly). But it's never too late to

> start antibiotic therapy. I've talked with a number

> of people who started it years after they first were

> diagnosed with RA (and other rheumatic diseases -

> this is a therapy used for a variety of diseases).

> It does take awhile to work, and it's best to start

> early. But better late than never, I think. Given

> the number of people I see talking about how they're

> having to increase the dosage on their meds, or add

> new ones as the old ones don't seem to be working,

> it seems that considering the antibiotic protocol

> (AP) would be very valid.

>

> The way I understand the AP is that it goes after

> bacteria in the joints. There's a growing belief

> that much of the RA symptoms are caused by an

> infection (bacterial or maybe viral). By using an

> antibiotic that is known to go into the joints, the

> bacteria that could be causing the inflammation and

> development of the disease are destroyed. This is a

> simplistic explanation, of course, and there's much

> more to it than this. But what I do know is that

> this treatment works for a large number of people,

> and that many of them get to a point where they are

> maintained *symptom-free* for often years with

> nothing but a small maintenance dose of antibiotic.

> No prednisone, no methotrexate, no plaquenil, no

> humirex, no enbrel - just a small (often 3X a week)

> dose of antibiotic.

>

> There are specific antibiotics that work for this.

> They need to be in the tetracycline group. I am on

> doxycycline, although minocycline (minocin) is said

> to be the best to use. Someone commented on not

> wanting to go on massive doses of antibiotics -

> well, it's not generally a massive dose. It's

> typical to be on 100mg a day, once a day, with some

> people needing 100mg twice a day. I am on 100mg

> once a day. Maintenance dose, like I said, is often

> 100mg 3X a week.

>

> I did have to go on prednisone because I needed to

> reduce the swelling in my joints. If the joints are

> too inflamed, it becomes difficult for the

> antibiotic to get into the joints to do the work

> they need to do. In addition, as the antibiotic is

> working, you can go through some pretty rough times

> as the bacteria releases toxins into your system.

> They call these flares " Jarisch-Herxheimer

> Reactions " and they aren't much fun. But then

> again, what IS fun about this disease?

>

> I also chose (and it WAS my choice, as all treatment

> should be our choice) to go on plaquenil. I did

> this because I wanted to help reduce the possibility

> of joint damage while giving the antibiotic time to

> work. I will cut back or eliminate the plaquenil as

> soon as I can, and I'm already on an every other day

> low dose of prednisone. I can see improvement

> overall, and definitely from this winter when I was

> nearly bedridden.

>

> One of the nice side effects of the AP is that I

> don't have much risk of infection. In the seven

> months I've been on the antibiotics, I've had no

> colds, flu, or anything else although I am around

> people all the time (and people who are coming here

> from all over the U.S. as I work at a fishing

> lodge). Unlike the other meds that depress the

> immune system, I'm keeping mine relatively strong

> throughout this. There are relatively few side

> effects to the medication. And I just heard on the

> radio yesterday that doxycycline is one of the

> antibiotics prescribed for anthrax, so I'm probably

> even safe there! *L*

>

> I would really recommend that people at least look

> into this kind of treatment. It may not be for

> everyone, but I can't see how it could be worse than

> the drugs many of you are taking now. So many of

> those who tried the AP are in remission (as they

> describe it). I dream of the days when I can do

> well on just a low dose of antibiotic.

>

> and the gang in Alaska

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

, I have been reading soom on AP but find

limited information. Also as options my rheumy has

never mentioned it but has mentioned humira, embrel, &

plaquenil. I'm currently on mtx, folic acid. He

keeps increasing the dosage and my labs look better

but the fatique level isn't acceptable and with the

last increase my hair is falling out by the

handfuls-unacceptable. So I've reduced my dosage back

down to half what he wants me on and started back with

very low dosage decadron. I plan to call him tomorrow

and let him know what I've done. I am looking for

other options and right now AP sounds better to me

than humira or embrel. I think they are wonderful

drugs but not for me at this point. I may get there

but not yet. If you have good web sites with info I

would be interested in researching AP further. I did

go to the one listed in your post but would like more.

Thanks,

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

> Hi all -

>

> Just catching up on emails. I'm glad that some of

> you found my post on medications and use of

> antibiotics interesting. I want everyone to know

> that I don't have any financial interest in the

> antibiotic companies - I just have a firm belief

> that the antibiotic protocol is a valid way to go.

>

> I do feel lucky that I started on the antibiotics

> within a few weeks of diagnosis (and that I was

> diagnosed quickly). But it's never too late to

> start antibiotic therapy. I've talked with a number

> of people who started it years after they first were

> diagnosed with RA (and other rheumatic diseases -

> this is a therapy used for a variety of diseases).

> It does take awhile to work, and it's best to start

> early. But better late than never, I think. Given

> the number of people I see talking about how they're

> having to increase the dosage on their meds, or add

> new ones as the old ones don't seem to be working,

> it seems that considering the antibiotic protocol

> (AP) would be very valid.

>

> The way I understand the AP is that it goes after

> bacteria in the joints. There's a growing belief

> that much of the RA symptoms are caused by an

> infection (bacterial or maybe viral). By using an

> antibiotic that is known to go into the joints, the

> bacteria that could be causing the inflammation and

> development of the disease are destroyed. This is a

> simplistic explanation, of course, and there's much

> more to it than this. But what I do know is that

> this treatment works for a large number of people,

> and that many of them get to a point where they are

> maintained *symptom-free* for often years with

> nothing but a small maintenance dose of antibiotic.

> No prednisone, no methotrexate, no plaquenil, no

> humirex, no enbrel - just a small (often 3X a week)

> dose of antibiotic.

>

> There are specific antibiotics that work for this.

> They need to be in the tetracycline group. I am on

> doxycycline, although minocycline (minocin) is said

> to be the best to use. Someone commented on not

> wanting to go on massive doses of antibiotics -

> well, it's not generally a massive dose. It's

> typical to be on 100mg a day, once a day, with some

> people needing 100mg twice a day. I am on 100mg

> once a day. Maintenance dose, like I said, is often

> 100mg 3X a week.

>

> I did have to go on prednisone because I needed to

> reduce the swelling in my joints. If the joints are

> too inflamed, it becomes difficult for the

> antibiotic to get into the joints to do the work

> they need to do. In addition, as the antibiotic is

> working, you can go through some pretty rough times

> as the bacteria releases toxins into your system.

> They call these flares " Jarisch-Herxheimer

> Reactions " and they aren't much fun. But then

> again, what IS fun about this disease?

>

> I also chose (and it WAS my choice, as all treatment

> should be our choice) to go on plaquenil. I did

> this because I wanted to help reduce the possibility

> of joint damage while giving the antibiotic time to

> work. I will cut back or eliminate the plaquenil as

> soon as I can, and I'm already on an every other day

> low dose of prednisone. I can see improvement

> overall, and definitely from this winter when I was

> nearly bedridden.

>

> One of the nice side effects of the AP is that I

> don't have much risk of infection. In the seven

> months I've been on the antibiotics, I've had no

> colds, flu, or anything else although I am around

> people all the time (and people who are coming here

> from all over the U.S. as I work at a fishing

> lodge). Unlike the other meds that depress the

> immune system, I'm keeping mine relatively strong

> throughout this. There are relatively few side

> effects to the medication. And I just heard on the

> radio yesterday that doxycycline is one of the

> antibiotics prescribed for anthrax, so I'm probably

> even safe there! *L*

>

> I would really recommend that people at least look

> into this kind of treatment. It may not be for

> everyone, but I can't see how it could be worse than

> the drugs many of you are taking now. So many of

> those who tried the AP are in remission (as they

> describe it). I dream of the days when I can do

> well on just a low dose of antibiotic.

>

> and the gang in Alaska

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Hi -

The best place to start is at the http://www.rheumatic.org site. I would

recommend special attention to the " Frequently Asked Questions " page, and the

pages on " Information for You and Your Doctor " (has a lot of links on it) and

the Medical Histories, which are the accounts written by people who have used

the AP. Many of these people can still be found on the support list, although I

will tell you now that the support list there is not like the one here. They

answer questions but are more support in knowledge than in emotion, if that

makes sense. I didn't bookmark all the sites I've visited along the line (not

sure why) but if you do a search for " rheumatoid arthritis antibiotics " you'll

get a lot of hits.

My understanding of the folic acid used in conjunction with methotrexate is

because of the side effect of mtx - the folic acid is supposed to help with

that. I am always concerned when you have to take one type of med/supplement in

order to combat the problems you'll have with another medicine. I just can't

think that's healthy for us.

Our doctors should be there to advise us and give us their educated opinions,

but in all honesty I think that a lot of rheumatologists are blocked against the

use of anything except for the " accepted " drugs. We shouldn't have to suffer

because they're not willing to expand their educations a bit. WE are the ones

going through all of this, and ALL the options should be offered to us. And

then the choice should be ours. No treatment works for every single person, but

in all honesty I see more people complaining of pain and having to increase

medications in those on the " regular " RA meds, and fewer people complaining of

those things who are on the AP.

I'm not going to try to pretend it's not a long road with some difficulties

along the way. When the antibiotics start to kill off the bacteria, you get

really achy and it's kind of miserable. But I think that many are experiencing

those aches anyway, and the drugs they give us now just try to control that and

not FIX it. None of the drugs being used (methotrexate, enbrel, whatever) work

to end the problem - they only work to control it. With antibiotics, you have a

better chance of - well, not curing it, but beating it down to the point where

you are nearly normal again. And you always have the more toxic drugs to go to

later if you really feel you need to.

As always, these are my opinions and I'm not a doctor (although I was an EMT for

years and also a vet tech, so I have some medical training in my background).

in Alaska

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

From: Boyd

, I have been reading soom on AP but find

limited information. Also as options my rheumy has

never mentioned it but has mentioned humira, embrel, &

plaquenil. I'm currently on mtx, folic acid. He

keeps increasing the dosage and my labs look better

but the fatique level isn't acceptable and with the

last increase my hair is falling out by the

handfuls-unacceptable. So I've reduced my dosage back

down to half what he wants me on and started back with

very low dosage decadron. I plan to call him tomorrow

and let him know what I've done. I am looking for

other options and right now AP sounds better to me

than humira or embrel. I think they are wonderful

drugs but not for me at this point. I may get there

but not yet. If you have good web sites with info I

would be interested in researching AP further. I did

go to the one listed in your post but would like more.

Thanks,

[Guest guest]

Hi -

The best place to start is at the http://www.rheumatic.org site. I would

recommend special attention to the " Frequently Asked Questions " page, and the

pages on " Information for You and Your Doctor " (has a lot of links on it) and

the Medical Histories, which are the accounts written by people who have used

the AP. Many of these people can still be found on the support list, although I

will tell you now that the support list there is not like the one here. They

answer questions but are more support in knowledge than in emotion, if that

makes sense. I didn't bookmark all the sites I've visited along the line (not

sure why) but if you do a search for " rheumatoid arthritis antibiotics " you'll

get a lot of hits.

My understanding of the folic acid used in conjunction with methotrexate is

because of the side effect of mtx - the folic acid is supposed to help with

that. I am always concerned when you have to take one type of med/supplement in

order to combat the problems you'll have with another medicine. I just can't

think that's healthy for us.

Our doctors should be there to advise us and give us their educated opinions,

but in all honesty I think that a lot of rheumatologists are blocked against the

use of anything except for the " accepted " drugs. We shouldn't have to suffer

because they're not willing to expand their educations a bit. WE are the ones

going through all of this, and ALL the options should be offered to us. And

then the choice should be ours. No treatment works for every single person, but

in all honesty I see more people complaining of pain and having to increase

medications in those on the " regular " RA meds, and fewer people complaining of

those things who are on the AP.

I'm not going to try to pretend it's not a long road with some difficulties

along the way. When the antibiotics start to kill off the bacteria, you get

really achy and it's kind of miserable. But I think that many are experiencing

those aches anyway, and the drugs they give us now just try to control that and

not FIX it. None of the drugs being used (methotrexate, enbrel, whatever) work

to end the problem - they only work to control it. With antibiotics, you have a

better chance of - well, not curing it, but beating it down to the point where

you are nearly normal again. And you always have the more toxic drugs to go to

later if you really feel you need to.

As always, these are my opinions and I'm not a doctor (although I was an EMT for

years and also a vet tech, so I have some medical training in my background).

in Alaska

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

From: Boyd

, I have been reading soom on AP but find

limited information. Also as options my rheumy has

never mentioned it but has mentioned humira, embrel, &

plaquenil. I'm currently on mtx, folic acid. He

keeps increasing the dosage and my labs look better

but the fatique level isn't acceptable and with the

last increase my hair is falling out by the

handfuls-unacceptable. So I've reduced my dosage back

down to half what he wants me on and started back with

very low dosage decadron. I plan to call him tomorrow

and let him know what I've done. I am looking for

other options and right now AP sounds better to me

than humira or embrel. I think they are wonderful

drugs but not for me at this point. I may get there

but not yet. If you have good web sites with info I

would be interested in researching AP further. I did

go to the one listed in your post but would like more.

Thanks,