Re: My Post

[Guest guest]

I have ordered from an overseas pharmacy and received the doxy with

no problem. I must add that that was before Sept. 11th. However, I may

very well order again in the near future. I still have some doxy.

I, on the other hand, have some anger because I was not put on

minocycline which is not only relatively benign but has a good rate of

remission. In my opinion, it is a sin to put people on mtx., plaquenil,

imuran, pred., and so on when there are several antibiotics and

supplements to prevent joint destruction, and the progression of

disease. To me, these treatments are in a different ballpark and my

heart aches for anyone who chooses these drugs without giving other

treatments their all.

[Guest guest]

Thank you to everyone who has shown their concern at my decision to

put AP on the back burner for the time being, and taken the time to

write to me with their thoughts on the matter.

I must appologise if I came across as sounding selfish and sorry for

myself in my last post...that was never my intention. I do realise

that you all have lives to lead and many people have other issues

going on in their personal lives which take priority over replying

to posts. I myself have some upsetting issues in my life at the

moment concerning child access arrangements following my divorce.

My ex husband has taken my youngest son to live abroad and is

denying me any contact with him and I am in the process of taking

him to court. I have also had to give up work due to my poor health

and due to financial hardship I feel under great pressure to find

another job. So I also appologise if I have neglected to reply to

all your emails on time.

I confess I was feeling very down when I wrote that post and I'm

sorry if I inadvertently offended anyone. I had just spent several

hours researching online pharmacies who were prepared to supply

drugs without a prescription and who dealt internationally. I have

to say that they don't instill me with confidence. There are so

many stories of disreputable companies who take advantage of people

who can't obtain the drugs they need from their doctors. They prey

on their vulnerability knowing they have no other choice. You hear

of people sending their money and never seeing the goods. If they

send the drugs, there is a good chance customs will confiscate

them. Even if I receive them how can I be certain they are pure?

My health is too important to take such a huge risk.

I know that the alternatives to AP are highly toxic. But I still do

feel that the Rheumatic.org site should be more balanced in

mentioning the potential serious side effects of taking Minocin long

term.

I am unable to safely obtain Minocin, and until I can find a

reliable source I have decided 'better the devil you know'. I will

continue taking Plaquenil for the time being and I may have to add

Methotrexate, but I live in hope that in the not too distant future

a better alternative will be marketed.

I will still visit the BB to keep informed, and as I have made some

dear friends I will try to get to the chats every now and then.

Take care

Lindy

[Guest guest]

Lindy wrote:

" But I still do

feel that the Rheumatic.org site should be more balanced in

mentioning the potential serious side effects of taking Minocin long term. "

Some thoughts:

Every drug has potential side effects. I guess the real question for

minocin is how often do these side effects occur and in what % of people?

Did you doctor have stats for that? I suspect the odds of lupus-type

effects are pretty low. I certainly have not seen a large number of posts

here from people taking minocin who have had those effects, in fact I can't

recall any, but then I have a lousy memory , too.

It is certainly no more dangerous than methotrexate (a drug I have been on

for close to 4 years now). If you were to read the possible side effects of

methotrexate, you'd never take that drug either, but in reality, it has

negative effects for a small percentage of people (no consolation to those

folks who are affected negatively, of course). I suspect the negative

effects of metho though are potentially greater than the negative effects of

minocin. Many people will try to tell you it will lower your immune system

so much , you will be sick all the time and have constant colds. I haven't

had a cold or the flu in all the years I've been on metho. The dosages I

take (15mg/week) are fairly low and thus that problem doesn't seem to happen

(with me, anyway). It probably has something to do with me being such a

good person. LOL.

I personally know many people taking methotrexate with no negative effects

and some have been on the drug for a considerable period of time. I am sure

you will find a number of people here who had negative responses to

methotrexate and thus they have migrated to this approach (minocin). If you

want a more balanced view of methotrexate (disclaimer - take with a grain of

salt anything you read in newsgroups. ), I'd suggest browsing some of the

newsgroups such as alt.support.arthritis where you will find many patients

on the " conventional " drugs. They have answered many of my questions re:

methotrexate.

However, if I were in your shoes, I'd give the minocin a try to begin with.

Personally, I like the side effect profile of minocin much more than I do of

methotrexate. I did give the minocin a 1 year trial and initially had good

results and then it failed. Now it may very well have failed cause I had a

lousy AP doc, I didn't try IV clindy (I lived a long ways from AP doc and he

would not take responsibility for anything happening to me - probably afraid

i would get bad case of C. difficile), I didn't take bursts of prednisone, I

didn't change my diet drastically and a host of other things. It was my

choice to switch to metho and it was one I didn't take lightly. I felt the

pain and stiffness I was undergoing was eventually going to end up in

permanent joint problems and thus bowed to the pressure of my doctors who

were extremely concerned that my condition was worsening. I am satisfied

with my response to methotrexate (no significant joint erosions, still have

full range of motion or close to it) but it is not a cure, it " can " have

side effects (I watch my blood test results like a hawk) and I'm hoping that

some day someone will come along with something that will really pinpoint

this bugger, although I have my doubts since I think it is different for

each person. In the meantime, I try to improve my diet, drink more water and

hope for the best, and who knows, maybe I'll end up back on minocin yet.

One should never close oneself off to something just to prove a point -one's

health deserves better than that.

I continue to monitor this board, because I'm interested in how people are

getting along with their minocin regimen. I remain skeptical of some of the

" alternative " ideas expressed and am not quite sure I understand why

everyone is needing to resort to all these " wonder " cures, if the minocin is

as effective as everyone says it is. It seemed that Dr. Brown didn't need to

resort to a host of alternative measures (yes, I have read his book - it's

how I came to use antibiotics) But I will also hasten to say, that if you

have done the research and feel it is working for you, then really, does my

opinion mean anything? I think not. Everyone who is feeling great should

celebrate regardless of what road they followed to get there.

As far as trying to find a reliable source for minocin, I suspect someone

here should be able to help you out. I would think you could find a

reputable pharmacy in Canada to send you the drugs. Having never bought

drugs without prescriptions, I am clueless on the topic. One last point -

if you do take minocin, make sure you take acidopholus products -

antibiotics can wreak havoc on tender tummies.

Mark

[Guest guest]

Hi Mark

Thanks for your opinions on the risk of Minocin, Methotrexate etc.

Many people seem perplexed that I should even mention the risks

associated with taking Minocin, but are only too quick to point out

the risks in taking Plaquenil, Methotrexate etc. Every drug known

to man has potential risks, however small. I just believe we should

be given all the facts so that we can make an informed choice. I am

not knocking Minocin, I just believe in balanced information. Infact

my rheumie insisted on making me an appointment with his nurse for a

consultation just so she could go through the risks of taking

DMARD's. He freely acepted they were not without risk and could be

very toxic and wasn't afraid to inform me of those risks, something

I applaud. Only after this consultation did I decide to try

Plaquenil on its own as opposed to a combination of Plaquenil and

Methotrexate which is what he had prescribed. I made my decision

based on the facts before me. I weighed up all the pro's and cons,

then made my decision. I have now been on Plaquenil for 5 months

with good results, but I still suffer some pain and stiffness and as

I want to return to work I am considering combination therapy with

Methotrexate in the hope it reduces the inflammation even further.

But at least I am aware of the possible dangers before making that

decision.

Lindy

Mark wrote:

<<<Some thoughts:

Every drug has potential side effects. I guess the real question for

minocin is how often do these side effects occur and in what % of

people?

Did you doctor have stats for that? I suspect the odds of lupus-type

effects are pretty low. I certainly have not seen a large number of

posts

here from people taking minocin who have had those effects, in fact

I can't

recall any, but then I have a lousy memory , too.

It is certainly no more dangerous than methotrexate (a drug I have

been on

for close to 4 years now). If you were to read the possible side

effects of

methotrexate, you'd never take that drug either, but in reality, it

has

negative effects for a small percentage of people (no consolation to

those

folks who are affected negatively, of course). I suspect the negative

effects of metho though are potentially greater than the negative

effects of

minocin. Many people will try to tell you it will lower your immune

system

so much , you will be sick all the time and have constant colds. I

haven't

had a cold or the flu in all the years I've been on metho. The

dosages I

take (15mg/week) are fairly low and thus that problem doesn't seem

to happen

(with me, anyway). It probably has something to do with me being

such a

good person. LOL.

I personally know many people taking methotrexate with no negative

effects

and some have been on the drug for a considerable period of time. I

am sure

you will find a number of people here who had negative responses to

methotrexate and thus they have migrated to this approach (minocin).

If you

want a more balanced view of methotrexate (disclaimer - take with a

grain of

salt anything you read in newsgroups. ), I'd suggest browsing some

of the

newsgroups such as alt.support.arthritis where you will find many

patients

on the " conventional " drugs. They have answered many of my questions

re:

methotrexate.

However, if I were in your shoes, I'd give the minocin a try to

begin with.

Personally, I like the side effect profile of minocin much more than

I do of

methotrexate. I did give the minocin a 1 year trial and initially

had good

results and then it failed. Now it may very well have failed cause I

had a

lousy AP doc, I didn't try IV clindy (I lived a long ways from AP

doc and he

would not take responsibility for anything happening to me -

probably afraid

i would get bad case of C. difficile), I didn't take bursts of

prednisone, I

didn't change my diet drastically and a host of other things. It was

my

choice to switch to metho and it was one I didn't take lightly. I

felt the

pain and stiffness I was undergoing was eventually going to end up in

permanent joint problems and thus bowed to the pressure of my

doctors who

were extremely concerned that my condition was worsening. I am

satisfied

with my response to methotrexate (no significant joint erosions,

still have

full range of motion or close to it) but it is not a cure, it " can "

have

side effects (I watch my blood test results like a hawk) and I'm

hoping that

some day someone will come along with something that will really

pinpoint

this bugger, although I have my doubts since I think it is different

for

each person. In the meantime, I try to improve my diet, drink more

water and

hope for the best, and who knows, maybe I'll end up back on minocin

yet.

One should never close oneself off to something just to prove a

point -one's

health deserves better than that.

I continue to monitor this board, because I'm interested in how

people are

getting along with their minocin regimen. I remain skeptical of some

of the

" alternative " ideas expressed and am not quite sure I understand why

everyone is needing to resort to all these " wonder " cures, if the

minocin is

as effective as everyone says it is. It seemed that Dr. Brown didn't

need to

resort to a host of alternative measures (yes, I have read his book -

it's

how I came to use antibiotics) But I will also hasten to say, that

if you

have done the research and feel it is working for you, then really,

does my

opinion mean anything? I think not. Everyone who is feeling great

should

celebrate regardless of what road they followed to get there.

As far as trying to find a reliable source for minocin, I suspect

someone

here should be able to help you out. I would think you could find a

reputable pharmacy in Canada to send you the drugs. Having never

bought

drugs without prescriptions, I am clueless on the topic. One last

point -

if you do take minocin, make sure you take acidopholus products -

antibiotics can wreak havoc on tender tummies.

Mark>>>

[Guest guest]

You'd better be taking a probiotic with the drugs you are on as well.

Ethel

..Original Message -----

From: " Mark Holmes " <mholmes@...>

" rheumatic@... " <rheumatic >

Sent: Sunday, November 03, 2002 6:28 PM

Subject: rheumatic RE: my post

> Lindy wrote:

> " But I still do

> feel that the Rheumatic.org site should be more balanced in

> mentioning the potential serious side effects of taking Minocin long term.

"

>

> Some thoughts:

>

> Every drug has potential side effects. I guess the real question for

> minocin is how often do these side effects occur and in what % of people?

> Did you doctor have stats for that? I suspect the odds of lupus-type

> effects are pretty low. I certainly have not seen a large number of posts

> here from people taking minocin who have had those effects, in fact I

can't

> recall any, but then I have a lousy memory , too.

>

> It is certainly no more dangerous than methotrexate (a drug I have been on

> for close to 4 years now). If you were to read the possible side effects

of

> methotrexate, you'd never take that drug either, but in reality, it has

> negative effects for a small percentage of people (no consolation to those

> folks who are affected negatively, of course). I suspect the negative

> effects of metho though are potentially greater than the negative effects

of

> minocin. Many people will try to tell you it will lower your immune system

> so much , you will be sick all the time and have constant colds. I haven't

> had a cold or the flu in all the years I've been on metho. The dosages I

> take (15mg/week) are fairly low and thus that problem doesn't seem to

happen

> (with me, anyway). It probably has something to do with me being such a

> good person. LOL.

>

> I personally know many people taking methotrexate with no negative

effects

> and some have been on the drug for a considerable period of time. I am

sure

> you will find a number of people here who had negative responses to

> methotrexate and thus they have migrated to this approach (minocin). If

you

> want a more balanced view of methotrexate (disclaimer - take with a grain

of

> salt anything you read in newsgroups. ), I'd suggest browsing some of

the

> newsgroups such as alt.support.arthritis where you will find many patients

> on the " conventional " drugs. They have answered many of my questions re:

> methotrexate.

>

> However, if I were in your shoes, I'd give the minocin a try to begin

with.

> Personally, I like the side effect profile of minocin much more than I do

of

> methotrexate. I did give the minocin a 1 year trial and initially had

good

> results and then it failed. Now it may very well have failed cause I had

a

> lousy AP doc, I didn't try IV clindy (I lived a long ways from AP doc and

he

> would not take responsibility for anything happening to me - probably

afraid

> i would get bad case of C. difficile), I didn't take bursts of prednisone,

I

> didn't change my diet drastically and a host of other things. It was my

> choice to switch to metho and it was one I didn't take lightly. I felt the

> pain and stiffness I was undergoing was eventually going to end up in

> permanent joint problems and thus bowed to the pressure of my doctors who

> were extremely concerned that my condition was worsening. I am

satisfied

> with my response to methotrexate (no significant joint erosions, still

have

> full range of motion or close to it) but it is not a cure, it " can " have

> side effects (I watch my blood test results like a hawk) and I'm hoping

that

> some day someone will come along with something that will really pinpoint

> this bugger, although I have my doubts since I think it is different for

> each person. In the meantime, I try to improve my diet, drink more water

and

> hope for the best, and who knows, maybe I'll end up back on minocin yet.

> One should never close oneself off to something just to prove a

point -one's

> health deserves better than that.

>

> I continue to monitor this board, because I'm interested in how people are

> getting along with their minocin regimen. I remain skeptical of some of

the

> " alternative " ideas expressed and am not quite sure I understand why

> everyone is needing to resort to all these " wonder " cures, if the minocin

is

> as effective as everyone says it is. It seemed that Dr. Brown didn't need

to

> resort to a host of alternative measures (yes, I have read his book - it's

> how I came to use antibiotics) But I will also hasten to say, that if you

> have done the research and feel it is working for you, then really, does

my

> opinion mean anything? I think not. Everyone who is feeling great should

> celebrate regardless of what road they followed to get there.

>

> As far as trying to find a reliable source for minocin, I suspect someone

> here should be able to help you out. I would think you could find a

> reputable pharmacy in Canada to send you the drugs. Having never bought

> drugs without prescriptions, I am clueless on the topic. One last

point -

> if you do take minocin, make sure you take acidopholus products -

> antibiotics can wreak havoc on tender tummies.

>

> Mark

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Just on the flip side of this, the first three years after

diagnosis, I was on plaquenil alone and did good. No joint damage.

It was amazing. My x rays looked great. I then went on the AP, and

cut back on the plaquenil, and it wasn't until I cut back on the

plaquenil did I get all of the joint damage that I have now ( and I now

have a good deal of damage). The plaquenil really did protect me from

damage and I am sorry that I did not stay on the full dose ( as

recommended by my rheumo as he felt I should not wean myself from it

until the blood work was normal) . This was an AP doctor that wanted me

to stay on it, and was not the rheumo who originally prescribed it for

me.

I just was one that is doing good on the AP, but it did not stop the

joint damage.Some others have been lucky and the AP has prevented them

from the joint destruction. It just depends on your case but I would not

condemn all the drugs that have been on the market for years.

At 04:09 PM 11/3/2002 +1030, you wrote:

I have ordered

from an overseas pharmacy and received the doxy with

no problem. I must add that that was before Sept. 11th.

However, I may

very well order again in the near future. I still have some

doxy.

I, on the other hand, have some anger because I was

not put on

minocycline which is not only relatively benign but has a good rate of

remission. In my opinion, it is a sin to put people on mtx.,

plaquenil,

imuran, pred., and so on when there are several antibiotics and

supplements to prevent joint destruction, and the progression of

disease. To me, these treatments are in a different ballpark

and my

heart aches for anyone who chooses these drugs without giving other

treatments their all.

[Guest guest]

hen get off this list and let us get on with our lives. We made our decision

and I knew the possible problems with Minocin before I ever took it. Seems

like your the only one too lazy to look up Minocin in the drug books. We are

here to help not baby sit.

cooky

rheumatic Re: My Post

Hi Mark

Thanks for your opinions on the risk of Minocin, Methotrexate etc.

Many people seem perplexed that I should even mention the risks

associated with taking Minocin, but are only too quick to point out

the risks in taking Plaquenil, Methotrexate etc. Every drug known

to man has potential risks, however small. I just believe we should

be given all the facts so that we can make an informed choice. I am

not knocking Minocin, I just believe in balanced information. Infact

my rheumie insisted on making me an appointment with his nurse for a

consultation just so she could go through the risks of taking

DMARD's. He freely acepted they were not without risk and could be

very toxic and wasn't afraid to inform me of those risks, something

I applaud. Only after this consultation did I decide to try

Plaquenil on its own as opposed to a combination of Plaquenil and

Methotrexate which is what he had prescribed. I made my decision

based on the facts before me. I weighed up all the pro's and cons,

then made my decision. I have now been on Plaquenil for 5 months

with good results, but I still suffer some pain and stiffness and as

I want to return to work I am considering combination therapy with

Methotrexate in the hope it reduces the inflammation even further.

But at least I am aware of the possible dangers before making that

decision.

Lindy

Mark wrote:

<<<Some thoughts:

Every drug has potential side effects. I guess the real question for

minocin is how often do these side effects occur and in what % of

people?

Did you doctor have stats for that? I suspect the odds of lupus-type

effects are pretty low. I certainly have not seen a large number of

posts

here from people taking minocin who have had those effects, in fact

I can't

recall any, but then I have a lousy memory , too.

It is certainly no more dangerous than methotrexate (a drug I have

been on

for close to 4 years now). If you were to read the possible side

effects of

methotrexate, you'd never take that drug either, but in reality, it

has

negative effects for a small percentage of people (no consolation to

those

folks who are affected negatively, of course). I suspect the negative

effects of metho though are potentially greater than the negative

effects of

minocin. Many people will try to tell you it will lower your immune

system

so much , you will be sick all the time and have constant colds. I

haven't

had a cold or the flu in all the years I've been on metho. The

dosages I

take (15mg/week) are fairly low and thus that problem doesn't seem

to happen

(with me, anyway). It probably has something to do with me being

such a

good person. LOL.

I personally know many people taking methotrexate with no negative

effects

and some have been on the drug for a considerable period of time. I

am sure

you will find a number of people here who had negative responses to

methotrexate and thus they have migrated to this approach (minocin).

If you

want a more balanced view of methotrexate (disclaimer - take with a

grain of

salt anything you read in newsgroups. ), I'd suggest browsing some

of the

newsgroups such as alt.support.arthritis where you will find many

patients

on the " conventional " drugs. They have answered many of my questions

re:

methotrexate.

However, if I were in your shoes, I'd give the minocin a try to

begin with.

Personally, I like the side effect profile of minocin much more than

I do of

methotrexate. I did give the minocin a 1 year trial and initially

had good

results and then it failed. Now it may very well have failed cause I

had a

lousy AP doc, I didn't try IV clindy (I lived a long ways from AP

doc and he

would not take responsibility for anything happening to me -

probably afraid

i would get bad case of C. difficile), I didn't take bursts of

prednisone, I

didn't change my diet drastically and a host of other things. It was

my

choice to switch to metho and it was one I didn't take lightly. I

felt the

pain and stiffness I was undergoing was eventually going to end up in

permanent joint problems and thus bowed to the pressure of my

doctors who

were extremely concerned that my condition was worsening. I am

satisfied

with my response to methotrexate (no significant joint erosions,

still have

full range of motion or close to it) but it is not a cure, it " can "

have

side effects (I watch my blood test results like a hawk) and I'm

hoping that

some day someone will come along with something that will really

pinpoint

this bugger, although I have my doubts since I think it is different

for

each person. In the meantime, I try to improve my diet, drink more

water and

hope for the best, and who knows, maybe I'll end up back on minocin

yet.

One should never close oneself off to something just to prove a

point -one's

health deserves better than that.

I continue to monitor this board, because I'm interested in how

people are

getting along with their minocin regimen. I remain skeptical of some

of the

" alternative " ideas expressed and am not quite sure I understand why

everyone is needing to resort to all these " wonder " cures, if the

minocin is

as effective as everyone says it is. It seemed that Dr. Brown didn't

need to

resort to a host of alternative measures (yes, I have read his book -

it's

how I came to use antibiotics) But I will also hasten to say, that

if you

have done the research and feel it is working for you, then really,

does my

opinion mean anything? I think not. Everyone who is feeling great

should

celebrate regardless of what road they followed to get there.

As far as trying to find a reliable source for minocin, I suspect

someone

here should be able to help you out. I would think you could find a

reputable pharmacy in Canada to send you the drugs. Having never

bought

drugs without prescriptions, I am clueless on the topic. One last

point -

if you do take minocin, make sure you take acidopholus products -

antibiotics can wreak havoc on tender tummies.

Mark>>>

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

I feel compelled to say something here.

I also am new, and am reading everything I

can find re AP. I appreciate the support I’ve received from many of the

members of this board.

I must say that the tone of your note

sounds angry and impatient. I would hope that we all can remember back to when

we were trying to make our best decision regarding any kind of treatment. Sometimes

when you’re all alone, in pain, tired and overwhelmed, it is a difficult

task to sort through all the bits and pieces.

I think the request to balance an

information site with the possible side effects is reasonable. I appreciated

the positive information I found on the site, but needed to go elsewhere to

find out what were the negative implications.

**Good luck Lindy,

whatever you decide!!!**

Robyn

RA 11 years

Minocin x 1 week

(former Rx Plaquenil, Gold oral and IM, MTX x 8 years)

-----Original

Message-----

From: Cooky

[mailto:cooky1@...]

Sent: November 3, 2002 7:47 PM

rheumatic

Subject: FW: rheumatic Re: My

Post

hen get off this list and let us get on with our

lives. We made our decision

and I knew the possible problems with Minocin

before I ever took it. Seems

like your the only one too lazy to look up Minocin

in the drug books. We are

here to help not baby sit.

cooky

rheumatic Re: My Post

Hi Mark

Thanks for your opinions on the risk of Minocin,

Methotrexate etc.

Many people seem perplexed that I should even

mention the risks

associated with taking Minocin, but are only too

quick to point out

the risks in taking Plaquenil, Methotrexate

etc. Every drug known

to man has potential risks, however small. I

just believe we should

be given all the facts so that we can make an

informed choice. I am

not knocking Minocin, I just believe in balanced

information. Infact

my rheumie insisted on making me an appointment

with his nurse for a

consultation just so she could go through the

risks of taking

DMARD's. He freely acepted they were not

without risk and could be

very toxic and wasn't afraid to inform me of those

risks, something

I applaud. Only after this consultation did I decide

to try

Plaquenil on its own as opposed to a combination

of Plaquenil and

Methotrexate which is what he had

prescribed. I made my decision

based on the facts before me. I weighed up all the

pro's and cons,

then made my decision. I have now been on Plaquenil

for 5 months

with good results, but I still suffer some pain

and stiffness and as

I want to return to work I am considering

combination therapy with

Methotrexate in the hope it reduces the

inflammation even further.

But at least I am aware of the possible dangers

before making that

decision.

Lindy

Mark wrote:

<<<Some thoughts:

Every drug has potential side effects. I guess the

real question for

minocin is how often do these side effects occur

and in what % of

people?

Did you doctor have stats for that? I suspect the

odds of lupus-type

effects are pretty low. I certainly have not seen

a large number of

posts

here from people taking minocin who have had those

effects, in fact

I can't

recall any, but then I have a lousy memory , too.

It is certainly no more dangerous than

methotrexate (a drug I have

been on

for close to 4 years now). If you were to read the

possible side

effects of

methotrexate, you'd never take that drug either,

but in reality, it

has

negative effects for a small percentage of people

(no consolation to

those

folks who are affected negatively, of course). I

suspect the negative

effects of metho though are potentially greater

than the negative

effects of

minocin. Many people will try to tell you it will

lower your immune

system

so much , you will be sick all the time and have

constant colds. I

haven't

had a cold or the flu in all the years I've been

on metho. The

dosages I

take (15mg/week) are fairly low and thus that

problem doesn't seem

to happen

(with me, anyway). It probably has something to do

with me being

such a

good person. LOL.

I personally know many people taking methotrexate

with no negative

effects

and some have been on the drug for a considerable

period of time. I

am sure

you will find a number of people here who had

negative responses to

methotrexate and thus they have migrated to this

approach (minocin).

If you

want a more balanced view of methotrexate

(disclaimer - take with a

grain of

salt anything you read in newsgroups. ), I'd

suggest browsing some

of the

newsgroups such as alt.support.arthritis where you

will find many

patients

on the " conventional " drugs. They have

answered many of my questions

re:

methotrexate.

However, if I were in your shoes, I'd give the

minocin a try to

begin with.

Personally, I like the side effect profile of

minocin much more than

I do of

methotrexate. I did give the minocin a 1 year

trial and initially

had good

results and then it failed. Now it may very well

have failed cause I

had a

lousy AP doc, I didn't try IV clindy (I lived a

long ways from AP

doc and he

would not take responsibility for anything

happening to me -

probably afraid

i would get bad case of C. difficile), I didn't

take bursts of

prednisone, I

didn't change my diet drastically and a host of

other things. It was

my

choice to switch to metho and it was one I didn't

take lightly. I

felt the

pain and stiffness I was undergoing was eventually

going to end up in

permanent joint problems and thus bowed to the

pressure of my

doctors who

were extremely concerned that my condition was

worsening. I am

satisfied

with my response to methotrexate (no significant

joint erosions,

still have

full range of motion or close to it) but it is not

a cure, it " can "

have

side effects (I watch my blood test results like a

hawk) and I'm

hoping that

some day someone will come along with something

that will really

pinpoint

this bugger, although I have my doubts since I

think it is different

for

each person. In the meantime, I try to improve my

diet, drink more

water and

hope for the best, and who knows, maybe I'll end

up back on minocin

yet.

One should never close oneself off to something

just to prove a

point -one's

health deserves better than that.

I continue to monitor this board, because I'm

interested in how

people are

getting along with their minocin regimen. I remain

skeptical of some

of the

" alternative " ideas expressed and am not

quite sure I understand why

everyone is needing to resort to all these

" wonder " cures, if the

minocin is

as effective as everyone says it is. It seemed

that Dr. Brown didn't

need to

resort to a host of alternative measures (yes, I

have read his book -

it's

how I came to use antibiotics) But I will also

hasten to say, that

if you

have done the research and feel it is working for

you, then really,

does my

opinion mean anything? I think not. Everyone who

is feeling great

should

celebrate regardless of what road they followed to

get there.

As far as trying to find a reliable source for

minocin, I suspect

someone

here should be able to help you out. I would think

you could find a

reputable pharmacy in Canada to send you the

drugs. Having never

bought

drugs without prescriptions, I am clueless on the

topic. One last

point -

if you do take minocin, make sure you take

acidopholus products -

antibiotics can wreak havoc on tender tummies.

Mark>>>

To unsubscribe, email:

rheumatic-unsubscribeegroups

[Guest guest]

I would like to think the majority of users to this BB don't share

the unhelpful comments copied below. I joined this support group

because it stated that it offered support for people either using or

contemplating using AP. I have been offered some excellent advice

from members whilst researching the use of Minocin to help me come

to a decision on whether or not to use it for myself and I am very

grateful for that.

I'm sorry if my request for all the details, negative as well as

positive has angered or annoyed anyone. I'm happy for Cookie that AP

has worked so well for him/her, but if he/she bothered to take the

time to read back on all my posts he/she would clearly see that I

have thoroughly researched the use of Minocin and tried hard to find

a doctor who will prescribe for me. There is only one AP doctor in

the whole of the UK and he is a 12 hour round trip by car. If I saw

him I would still have to find a doctor who was willing to prescribe

and non of the doctors in my GP's practice will even consider this.

In the UK we are only allowed to register with a local doctor in our

home town. It's a pity we are not all blessed with Cookie's good

fortune. I didn't come here to upset anyone, I was just requesting

balanced information. If that request offends the majority then I

will of course stop posting my views.

Lindy

From: " Cooky " <cooky1@a...>

Date: Mon Nov 4, 2002 3:46 am

Subject: FW: rheumatic Re: My Post

hen get off this list and let us get on with our lives. We made our

decision

and I knew the possible problems with Minocin before I ever took it.

Seems

like your the only one too lazy to look up Minocin in the drug

books. We are

here to help not baby sit.

cooky

rheumatic Re: My Post

Hi Mark

Thanks for your opinions on the risk of Minocin, Methotrexate etc.

Many people seem perplexed that I should even mention the risks

associated with taking Minocin, but are only too quick to point out

the risks in taking Plaquenil, Methotrexate etc. Every drug known

to man has potential risks, however small. I just believe we should

be given all the facts so that we can make an informed choice. I am

not knocking Minocin, I just believe in balanced information. Infact

my rheumie insisted on making me an appointment with his nurse for a

consultation just so she could go through the risks of taking

DMARD's. He freely acepted they were not without risk and could be

very toxic and wasn't afraid to inform me of those risks, something

I applaud. Only after this consultation did I decide to try

Plaquenil on its own as opposed to a combination of Plaquenil and

Methotrexate which is what he had prescribed. I made my decision

based on the facts before me. I weighed up all the pro's and cons,

then made my decision. I have now been on Plaquenil for 5 months

with good results, but I still suffer some pain and stiffness and as

I want to return to work I am considering combination therapy with

Methotrexate in the hope it reduces the inflammation even further.

But at least I am aware of the possible dangers before making that

decision.

Lindy

[Guest guest]

Sorry about the problems you are having. However, you mention the distance to a Dr. and having to find another one and etc.

I live on the southern border of Lower Michigan and to get my first IVs we drove to Iowa, nearly to Nebraska and stayed for 5 days to see Dr. Sinnott. He in turns works via phone with me and with a new Dr. here that is willing to learn the AP.

Maybe you could try something like that.

Skip RA 14 yrs.

FW: rheumatic Re: My Posthen get off this list and let us get on with our lives. We made our decisionand I knew the possible problems with Minocin before I ever took it. Seemslike your the only one too lazy to look up Minocin in the drug books. We arehere to help not baby sit.cooky-----Original Message-----From: purpleoranges2002 [mailto:melinda159@h...]Sent: Sunday, November 03, 2002 6:56 PMrheumatic Subject: rheumatic Re: My PostHi MarkThanks for your opinions on the risk of Minocin, Methotrexate etc.Many people seem perplexed that I should even mention the risksassociated with taking Minocin, but are only too quick to point outthe risks in taking Plaquenil, Methotrexate etc. Every drug knownto man has potential risks, however small. I just believe we shouldbe given all the facts so that we can make an informed choice. I amnot knocking Minocin, I just believe in balanced information. Infactmy rheumie insisted on making me an appointment with his nurse for aconsultation just so she could go through the risks of takingDMARD's. He freely acepted they were not without risk and could bevery toxic and wasn't afraid to inform me of those risks, somethingI applaud. Only after this consultation did I decide to tryPlaquenil on its own as opposed to a combination of Plaquenil andMethotrexate which is what he had prescribed. I made my decisionbased on the facts before me. I weighed up all the pro's and cons,then made my decision. I have now been on Plaquenil for 5 monthswith good results, but I still suffer some pain and stiffness and asI want to return to work I am considering combination therapy withMethotrexate in the hope it reduces the inflammation even further.But at least I am aware of the possible dangers before making thatdecision.LindyTo unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Cooky, I hope this post can be blamed on you having bad day. Regardless, I

think you owe Lindy an apology. No one has a right to speak to anyone in

this manner. Lindy came looking for information and many replied. If she

still thinks Minocin has too many risks for her, after all that has been

shared, or if she doesn't think she can trust off-shore pharmacies to

deliver product as advertised, then that's her decision. She has to live

with it, not us.

If Lindy decides to go with the more toxic drugs, then she will no doubt

subscribe to a list where people are also using those drugs, instead of

trying to remain on ours.

I still think you're special, Cooky.

Ethel

rheumatic Re: My Post

>

>

> Hi Mark

> Thanks for your opinions on the risk of Minocin, Methotrexate etc.

> Many people seem perplexed that I should even mention the risks

> associated with taking Minocin, but are only too quick to point out

> the risks in taking Plaquenil, Methotrexate etc. Every drug known

> to man has potential risks, however small. I just believe we should

> be given all the facts so that we can make an informed choice. I am

> not knocking Minocin, I just believe in balanced information. Infact

> my rheumie insisted on making me an appointment with his nurse for a

> consultation just so she could go through the risks of taking

> DMARD's. He freely acepted they were not without risk and could be

> very toxic and wasn't afraid to inform me of those risks, something

> I applaud. Only after this consultation did I decide to try

> Plaquenil on its own as opposed to a combination of Plaquenil and

> Methotrexate which is what he had prescribed. I made my decision

> based on the facts before me. I weighed up all the pro's and cons,

> then made my decision. I have now been on Plaquenil for 5 months

> with good results, but I still suffer some pain and stiffness and as

> I want to return to work I am considering combination therapy with

> Methotrexate in the hope it reduces the inflammation even further.

> But at least I am aware of the possible dangers before making that

> decision.

> Lindy

>

> Mark wrote:

>

>

> <<<Some thoughts:

>

> Every drug has potential side effects. I guess the real question for

> minocin is how often do these side effects occur and in what % of

> people?

> Did you doctor have stats for that? I suspect the odds of lupus-type

> effects are pretty low. I certainly have not seen a large number of

> posts

> here from people taking minocin who have had those effects, in fact

> I can't

> recall any, but then I have a lousy memory , too.

>

> It is certainly no more dangerous than methotrexate (a drug I have

> been on

> for close to 4 years now). If you were to read the possible side

> effects of

> methotrexate, you'd never take that drug either, but in reality, it

> has

> negative effects for a small percentage of people (no consolation to

> those

> folks who are affected negatively, of course). I suspect the negative

> effects of metho though are potentially greater than the negative

> effects of

> minocin. Many people will try to tell you it will lower your immune

> system

> so much , you will be sick all the time and have constant colds. I

> haven't

> had a cold or the flu in all the years I've been on metho. The

> dosages I

> take (15mg/week) are fairly low and thus that problem doesn't seem

> to happen

> (with me, anyway). It probably has something to do with me being

> such a

> good person. LOL.

>

> I personally know many people taking methotrexate with no negative

> effects

> and some have been on the drug for a considerable period of time. I

> am sure

> you will find a number of people here who had negative responses to

> methotrexate and thus they have migrated to this approach (minocin).

> If you

> want a more balanced view of methotrexate (disclaimer - take with a

> grain of

> salt anything you read in newsgroups. ), I'd suggest browsing some

> of the

> newsgroups such as alt.support.arthritis where you will find many

> patients

> on the " conventional " drugs. They have answered many of my questions

> re:

> methotrexate.

>

> However, if I were in your shoes, I'd give the minocin a try to

> begin with.

> Personally, I like the side effect profile of minocin much more than

> I do of

> methotrexate. I did give the minocin a 1 year trial and initially

> had good

> results and then it failed. Now it may very well have failed cause I

> had a

> lousy AP doc, I didn't try IV clindy (I lived a long ways from AP

> doc and he

> would not take responsibility for anything happening to me -

> probably afraid

> i would get bad case of C. difficile), I didn't take bursts of

> prednisone, I

> didn't change my diet drastically and a host of other things. It was

> my

> choice to switch to metho and it was one I didn't take lightly. I

> felt the

> pain and stiffness I was undergoing was eventually going to end up in

> permanent joint problems and thus bowed to the pressure of my

> doctors who

> were extremely concerned that my condition was worsening. I am

> satisfied

> with my response to methotrexate (no significant joint erosions,

> still have

> full range of motion or close to it) but it is not a cure, it " can "

> have

> side effects (I watch my blood test results like a hawk) and I'm

> hoping that

> some day someone will come along with something that will really

> pinpoint

> this bugger, although I have my doubts since I think it is different

> for

> each person. In the meantime, I try to improve my diet, drink more

> water and

> hope for the best, and who knows, maybe I'll end up back on minocin

> yet.

> One should never close oneself off to something just to prove a

> point -one's

> health deserves better than that.

>

> I continue to monitor this board, because I'm interested in how

> people are

> getting along with their minocin regimen. I remain skeptical of some

> of the

> " alternative " ideas expressed and am not quite sure I understand why

> everyone is needing to resort to all these " wonder " cures, if the

> minocin is

> as effective as everyone says it is. It seemed that Dr. Brown didn't

> need to

> resort to a host of alternative measures (yes, I have read his book -

> it's

> how I came to use antibiotics) But I will also hasten to say, that

> if you

> have done the research and feel it is working for you, then really,

> does my

> opinion mean anything? I think not. Everyone who is feeling great

> should

> celebrate regardless of what road they followed to get there.

>

> As far as trying to find a reliable source for minocin, I suspect

> someone

> here should be able to help you out. I would think you could find a

> reputable pharmacy in Canada to send you the drugs. Having never

> bought

> drugs without prescriptions, I am clueless on the topic. One last

> point -

> if you do take minocin, make sure you take acidopholus products -

> antibiotics can wreak havoc on tender tummies.

>

> Mark>>>

>

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Cooky,

I really don't think it is right to send a post to Lindy as you did. She has

alot to deal with already than receiving a post to tell her to get off the

list. This list is for everyone, whether they take regular meds or

antibiotics. We are supposed to support people, not shoot them down. Please

try to think about that in the future before pushing the send button.

rheumatic Re: My Post

>

>

> Hi Mark

> Thanks for your opinions on the risk of Minocin, Methotrexate etc.

> Many people seem perplexed that I should even mention the risks

> associated with taking Minocin, but are only too quick to point out

> the risks in taking Plaquenil, Methotrexate etc. Every drug known

> to man has potential risks, however small. I just believe we should

> be given all the facts so that we can make an informed choice. I am

> not knocking Minocin, I just believe in balanced information. Infact

> my rheumie insisted on making me an appointment with his nurse for a

> consultation just so she could go through the risks of taking

> DMARD's. He freely acepted they were not without risk and could be

> very toxic and wasn't afraid to inform me of those risks, something

> I applaud. Only after this consultation did I decide to try

> Plaquenil on its own as opposed to a combination of Plaquenil and

> Methotrexate which is what he had prescribed. I made my decision

> based on the facts before me. I weighed up all the pro's and cons,

> then made my decision. I have now been on Plaquenil for 5 months

> with good results, but I still suffer some pain and stiffness and as

> I want to return to work I am considering combination therapy with

> Methotrexate in the hope it reduces the inflammation even further.

> But at least I am aware of the possible dangers before making that

> decision.

> Lindy

>

> Mark wrote:

>

>

> <<<Some thoughts:

>

> Every drug has potential side effects. I guess the real question for

> minocin is how often do these side effects occur and in what % of

> people?

> Did you doctor have stats for that? I suspect the odds of lupus-type

> effects are pretty low. I certainly have not seen a large number of

> posts

> here from people taking minocin who have had those effects, in fact

> I can't

> recall any, but then I have a lousy memory , too.

>

> It is certainly no more dangerous than methotrexate (a drug I have

> been on

> for close to 4 years now). If you were to read the possible side

> effects of

> methotrexate, you'd never take that drug either, but in reality, it

> has

> negative effects for a small percentage of people (no consolation to

> those

> folks who are affected negatively, of course). I suspect the negative

> effects of metho though are potentially greater than the negative

> effects of

> minocin. Many people will try to tell you it will lower your immune

> system

> so much , you will be sick all the time and have constant colds. I

> haven't

> had a cold or the flu in all the years I've been on metho. The

> dosages I

> take (15mg/week) are fairly low and thus that problem doesn't seem

> to happen

> (with me, anyway). It probably has something to do with me being

> such a

> good person. LOL.

>

> I personally know many people taking methotrexate with no negative

> effects

> and some have been on the drug for a considerable period of time. I

> am sure

> you will find a number of people here who had negative responses to

> methotrexate and thus they have migrated to this approach (minocin).

> If you

> want a more balanced view of methotrexate (disclaimer - take with a

> grain of

> salt anything you read in newsgroups. ), I'd suggest browsing some

> of the

> newsgroups such as alt.support.arthritis where you will find many

> patients

> on the " conventional " drugs. They have answered many of my questions

> re:

> methotrexate.

>

> However, if I were in your shoes, I'd give the minocin a try to

> begin with.

> Personally, I like the side effect profile of minocin much more than

> I do of

> methotrexate. I did give the minocin a 1 year trial and initially

> had good

> results and then it failed. Now it may very well have failed cause I

> had a

> lousy AP doc, I didn't try IV clindy (I lived a long ways from AP

> doc and he

> would not take responsibility for anything happening to me -

> probably afraid

> i would get bad case of C. difficile), I didn't take bursts of

> prednisone, I

> didn't change my diet drastically and a host of other things. It was

> my

> choice to switch to metho and it was one I didn't take lightly. I

> felt the

> pain and stiffness I was undergoing was eventually going to end up in

> permanent joint problems and thus bowed to the pressure of my

> doctors who

> were extremely concerned that my condition was worsening. I am

> satisfied

> with my response to methotrexate (no significant joint erosions,

> still have

> full range of motion or close to it) but it is not a cure, it " can "

> have

> side effects (I watch my blood test results like a hawk) and I'm

> hoping that

> some day someone will come along with something that will really

> pinpoint

> this bugger, although I have my doubts since I think it is different

> for

> each person. In the meantime, I try to improve my diet, drink more

> water and

> hope for the best, and who knows, maybe I'll end up back on minocin

> yet.

> One should never close oneself off to something just to prove a

> point -one's

> health deserves better than that.

>

> I continue to monitor this board, because I'm interested in how

> people are

> getting along with their minocin regimen. I remain skeptical of some

> of the

> " alternative " ideas expressed and am not quite sure I understand why

> everyone is needing to resort to all these " wonder " cures, if the

> minocin is

> as effective as everyone says it is. It seemed that Dr. Brown didn't

> need to

> resort to a host of alternative measures (yes, I have read his book -

> it's

> how I came to use antibiotics) But I will also hasten to say, that

> if you

> have done the research and feel it is working for you, then really,

> does my

> opinion mean anything? I think not. Everyone who is feeling great

> should

> celebrate regardless of what road they followed to get there.

>

> As far as trying to find a reliable source for minocin, I suspect

> someone

> here should be able to help you out. I would think you could find a

> reputable pharmacy in Canada to send you the drugs. Having never

> bought

> drugs without prescriptions, I am clueless on the topic. One last

> point -

> if you do take minocin, make sure you take acidopholus products -

> antibiotics can wreak havoc on tender tummies.

>

> Mark>>>

>

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

At 16.27 04/11/02, you wrote:

>Sorry about the problems you are having. However, you mention the

>distance to a Dr. and having to find another one and etc.

>I live on the southern border of Lower Michigan and to get my first IVs we

>drove to Iowa, nearly to Nebraska and stayed for 5 days to see Dr.

>Sinnott. He in turns works via phone with me and with a new Dr. here

>that is willing to learn the AP.

>Maybe you could try something like that.

Maybe that'd be a bit far for you, Lindy ;-))

I too am in a similar situation here in Italy--the University professor

rheumy said he could only consider trying Minocin _if and after_

sulfasalazine failed for my PA. (He'd never heard of the treatment. I left

a bunch of literature, on which the rheumies under him pounced.) I told him

that I thought it was more logical to do it the other way around, but he

didn't agree. In the meantime I just read in the health magazine of the

newspaper an article about my very own rheumy announcing that Italy is the

first European country to approve free Remicade for spondylitis patients.

Do you think they want to threaten that accomplishment by fooling around

with Minocin? ;-)))

I may yet convince my GP to prescribe antibiotics, but he does not feel at

all good about it, tells me no, it is not necessarily benign, and I know he

doesn't have much time to read up, especially as he doesn't read English

all that well (I translated the protocol for him...) He says that studies

prove anything they want to, but I did point out that the MIRA trials were

not sponsored by a pharmaceutical company... However, he did ask me in the

meantime to get an opinion from my doctor relatives back in the states.

(They thought it was worth a try, and that the other route _probably_

presents more side effect risks, especially as that route is long term,

while I might hope the antibiotics would not go on too long.) My GP also

agreed a few months ago to request blood tests for mycoplasmas etc!

However, I've been doing so well that I wondered if it'd be a waste, in the

sense that he would hesitate to order these expensive tests again later

when I might flare, and be more likely to test positive. So I've put off

doing the testing.

In the meantime over the summer I've gotten much much better on my own,

feel great and have sed rate and c-reactive protein back to normal.

Diet changes, probiotics, linseed, mackerel, and stress reduction!

I am back to the lowish level of PA that I have lived with for 20 years.

The flare I had this Spring really scared me! I had a hard time walking and

had to ask for help for the simplest tasks, and now my only concern is

damage to the sacroilliac joint (I have slight damage there, yet have never

felt any real pain at that point), and the prospect of a flare returning.

And so, a few slight aches here and there and two stubbornly swollen

fingers remind me that the problem is not yet solved, and I am debating

whether to just ask the doctor for doxycycline now (he would probably agree

to that much more easily--he just put my daughter on it for acne, while

smirking at me as if to say this isn't for you is it..:-)) knowing that it

may or may not be effective, or should I wait and see if I get worse over

the winter, in which case I would either try to find a doctor willing to

prescribe/supervise, or make the trip to England myself.

As for having to have your own doctor prescribe, I believe that only

applies if you want the state to (at least partially) pay for it. Here in

Italy you can go to a private doctor or a specialist, and then ask your GP

to prescribe. If he won't, you can still get the meds, just that you have

to pay. Isn't it that way in the UK too? Expensive, but not being able to

work in the long run would be much worse! I will go that route if I have to

(pay out of pocket), but I have a feeling my GP might be more agreeable to

approving a specialist's prescription than having to justify his own. The

poor man would feel more comfortable if I just did as my University rheumy

asks, but he's put up with me so far, and will have to deal with me again

this Friday.

So I'll need to decide by this Friday:

1. Do the PCR testing here (not sure how good the labs are?) though my

inflammation is way down? But if I test negative it could be used " against " me?

2. Just ask the doc to let me try doxycyline now, if he won't go for Minocin?

3. Wait and see how I get through this winter, and at the first sign of

worsening, try to find a doc who will seriously help me here in Italy, or

make the trip to the UK? (good old Air will " pay " for car rental and

hotel) And in the meantime ask my GP on Friday if he'd be willing to cover

the prescriptions if I managed to find such a doc? (Otherwise paying

through the pocket.)

4. Get a doctor relative in the states to prescribe, but be essentially on

my owns as they are so busy it took me forever just to get them to check

this out.

It seems to me that with doxycycline you have to get lucky (that your

infection is affected by it), and I have also read that even Minocin has

not had too much success with spondylitis (my PA may have a spondylitis

form seeing as the damage is in the sacroillicac joint?) because the bug

often involved, klebsiella, is not affected by Minocin. (if I remember

correctly). Oh well, in the meantime, lots of vegetables and probiotics.

When I had my flare, I was eating badly (too much yummy pasta!), sleeping

poorly, stressing, working in front of the computer much too much and no

exercise...

Let us know what you do, Lindy--many points of view are important. Doing

whatever works _now_ is certainly very understandable in a difficult

situation. I work from home freelance, and ask myself how some of you

manage who have to get to work each day...

If anyone has any suggestions for me, please let me know,

Thanks so much for all your info, dear group

(another) Maureen (this one in Italy)

PA 20 years, no meds so far

P.S. Seeing as you all have so much experience with antibiotics ;-)), is

once-a-day probiotics enough for my 90 lb. daughter who just started

doxycycline for acne (100 mg/day)?

P.P.S. Anyone with PA who successfully used doxycycline?

[Guest guest]

Lindy, Cooky has always been helpful and generally supportive. I suspect she

was having a very bad day and probably regrets her email. At least I hope

that is the case.

Carol/Piney

rheumatic Re: My Post

>

>

> Hi Mark

> Thanks for your opinions on the risk of Minocin, Methotrexate etc.

> Many people seem perplexed that I should even mention the risks

> associated with taking Minocin, but are only too quick to point out

> the risks in taking Plaquenil, Methotrexate etc. Every drug known

> to man has potential risks, however small. I just believe we should

> be given all the facts so that we can make an informed choice. I am

> not knocking Minocin, I just believe in balanced information. Infact

> my rheumie insisted on making me an appointment with his nurse for a

> consultation just so she could go through the risks of taking

> DMARD's. He freely acepted they were not without risk and could be

> very toxic and wasn't afraid to inform me of those risks, something

> I applaud. Only after this consultation did I decide to try

> Plaquenil on its own as opposed to a combination of Plaquenil and

> Methotrexate which is what he had prescribed. I made my decision

> based on the facts before me. I weighed up all the pro's and cons,

> then made my decision. I have now been on Plaquenil for 5 months

> with good results, but I still suffer some pain and stiffness and as

> I want to return to work I am considering combination therapy with

> Methotrexate in the hope it reduces the inflammation even further.

> But at least I am aware of the possible dangers before making that

> decision.

> Lindy

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Hi Lindy! Geoff here.

You wrote:

> hours researching online pharmacies who were prepared to supply

> drugs without a prescription and who dealt internationally. I have

> to say that they don't instill me with confidence. There are so

> many stories of disreputable companies who take advantage of people

> who can't obtain the drugs they need from their doctors. They prey

> on their vulnerability knowing they have no other choice. You hear

> of people sending their money and never seeing the goods. If they

> send the drugs, there is a good chance customs will confiscate

> them. Even if I receive them how can I be certain they are pure?

The issues here are generally not the outfit you purchase from, but the

pharmaceutical companies themselves. Your focus appears to be on Minocin,

but one must ask, why?

For instance, the drug class of aid is " tetracyclines. " Minocin is one type

of tetracycline, it is **not always** the best choice for each individual

person, some people respond more favorably to others. My case is an

example: while I did test positive for mycoplasma, the paticular mycoplasma

I tested positive for is sensitive to Doxycycline, not Minocin. So absent

an absolute, the direction to be looking is toward the tetracycline class of

drugs, as opposed to becoming fixated on one drug in particular.

> My health is too important to take such a huge risk.

> I know that the alternatives to AP are highly toxic.

Yes, intentionally so. Cytotoxic drugs are intentionally toxic to the

normal functions of the human system. That is precisely why they are used

as mainline treatment, because there is widespread subscription to the

theory that the body is " confused. "

Again, you pays your money and takes your choice. All we can offer here is

emotional support, you must make the decision. The historic perspective of

success versus failure favors the AP, but that assails mainline medicine and

places you at odds with your care provider. That is not an easy place for

anyone to be.

> I am unable to safely obtain Minocin, and until I can find a

> reliable source I have decided 'better the devil you know'. I will

> continue taking Plaquenil for the time being and I may have to add

> Methotrexate, but I live in hope that in the not too distant future

> a better alternative will be marketed.

That's understandable. I don't agree with your assessment, but I do

understand it. You may find relief of your symptoms following this method,

many do. However, it will not cure your disease, nor does anyone claim it

will. The claims are that the method will make you more comfortable while

you remain sick and get sicker over time because they view the disease as

" incurable. " The " better alternatives " you hope for follow the same line of

thinking; the popular press uses the word cure synonymously with " relief

from pain. " They are not synonymous. Morphine may relieve the pain of a

lost leg, but it doesn't " cure " it.

Again, it is your choice. For some people, relief is preferred to cure for

a variety of reasons including time, accessability, finances, psychological

and familial pressures, etc. IMO, as long as the patient knows whether the

course of treatment is: (a) relief or ( cure, then the choice is

knowledgable and theirs alone.

Geoff

soli Deo gloria

www.HealingYou.org - Your nonprofit source for remedies and aids in fighting

these diseases, information on weaning from drugs, and nutritional kits for

repairing damage; 100% volunteer staffed.

[Guest guest]

Dear Lindy,

Another idea is for you to approach an ACAM (American College of Advancement

in Medicine) doctor in England. These doctors will usually offer the antibiotic

protocol if you take the Physicians' Protocol from rheumatic.org/protocol.htm

and our Frequently Asked Questions from rheumatic.org/faq.htm with you.

Dr. Hornett could then perhaps help by telephone. I don't know in which area

you live but I hope one of these doctors is closer to you than Dr. Hornett.

Here are ACAM doctors listed for England:

First Name: Rodney O.C.

Last Name: Adeniyi-

Title MB; BS; APCT

Address: 21 Devonshire Place

London, England, W1N 1PD

Phone: 44-20-7486-6354

Fax: 44-20-7486-6359

Email: buroaj@...

First Name: R.

Last Name: Colthurst

Title MB; BS; BPCT

Address: Balsdon Farmhouse

Folly Rd.; Inkpen; Hungerford

Berks, England, RG17 9DH

Phone: 44-1488-669007

First Name: Hugh J. E.

Last Name:

Title MB; ChB; BPCT

Address: 14 Ayleswater; Watermead

Aylesbury

Buckinghamshire, England, HP19 3FB

Phone: 44-1296-399317

Fax: 44-1296-399291

First Name: Tarsem Lal

Last Name: Garg

Title MD

Address: Prospect House, 32 Bolton Rd.

Arterial Disease Clinic

Atherton, Manchester

Phone: 1942-886644

Fax: 1942-889955

The following doctor specialises in rheumatic conditions -

First Name: M.J.

Last Name: Magovern

Title MB; BCH

Address: 126 Harley Street

London, England, W1N 1AH

Phone: 353-1-6785388

Fax: 353-1-6785905

Email: magovern@...

Specialty A;AC;FP;DD;OME;RHU

First Name: Wayne

Last Name:

Title MB; ChB

Address: 57a Wimpole Street

London, England, W1M 7DF

Phone: 0207-486-1095

Fax: 0207-486-3816

Email: info@...

First Name: F.

Last Name: Schellander

Title MD; APCT

Address: 8 Chilston Rd.

Tunbridge Wells

Kent, England, TN4 9LT

Phone: 44-892-543535

Fax: 44-1892-545160

Let us know how you get on?

Chris.

>I have thoroughly researched the use of Minocin and tried hard to find

>a doctor who will prescribe for me. There is only one AP doctor in

>the whole of the UK and he is a 12 hour round trip by car. If I saw

>him I would still have to find a doctor who was willing to prescribe

>and non of the doctors in my GP's practice will even consider this.

>In the UK we are only allowed to register with a local doctor in our

>home town.

[Guest guest]

Hi Maureen! Geoff here.

You wrote:

> P.S. Seeing as you all have so much experience with antibiotics ;-)), is

> once-a-day probiotics enough for my 90 lb. daughter who just started

> doxycycline for acne (100 mg/day)?

Do your daughter a favor, continue the probiotics for 6 months after she

finishes the antibiotics.

> P.P.S. Anyone with PA who successfully used doxycycline?

Probably depends on what is causing the PA. Point to remember for all: The

" diseases " are titles used to describe particular groupings of " symptoms. "

The " symptoms " are not necessarily always caused by the same antagonist,

i.e, the " symptoms " entitle PA may be caused by one or more various

antagonists, both known and unknown.

Manipulation of the immune system by drugs reduces the " symptoms " but does

not address the root cause(s).

Geoff

soli Deo gloria

www.HealingYou.org - Your nonprofit source for remedies and aids in fighting

these diseases, information on weaning from drugs, and nutritional kits for

repairing damage; 100% volunteer staffed.

[Guest guest]

Ron,

Everything is a risk, but the need for the benefit of a response has to factor

in at some point. The alemtuzumab will not suppress your neutrophils, which are

very important for fighting bacteria.

Rick Furman, MD

Re: My Post

>

>

>

> Ron,

>

> Are we sure the low counts are the result of CLL and not CMV or other

> problem? If the marrow is still impacted but the nodes have shrunken,

> one option is alemtuzumab. There are some other clincal trials that

> you could qualify for, such as TRU-016 and CAL-101.

> Rick Furman, MD

>

>

> >

> > Here, in brief, is my story:

> >

> >

> >

> > Currently 64, live in NYC and have had CLL for 17 years. I was

> treated first time with Fludarabine and Rituxin in 1999-2000 almost 8

> years after diagnosis). I achieved almost 8 year remission. I was

> treated with Rituxan and Cytoxin in 2004 due to some enlarged nodes in

> neck but only received two treatments since developed very high

> fevers. By 2008, very enlarged spleen, and highly impacted bone

> marrow. I also developed herpes and CMV in throat. Treatment was

> started again in 2008 with Rituxan and Cytoxin but stopped again after

> 2 rounds due to low counts. Since it was predicted that I would have a

> hard time with Chemo that was very immune-suppressant I started

> Trianda (Bedamustine) and Rituxan in February 2009 but again had to

> stop after only one treatment since all blood counts remain

> low---white below 1000, anemic, platelets 28, almost no neutrofils,

> etc. Spleen shrunk a little. The problem seems to be that my spleen

> and bone marrow is asynchronous with blood counts and nodes. Counts

> decline rapidly (in summer of 2008 had white blood count of 80,000

> which went to 4,000 after one treatment of Rituxan and Cytoxin) Also,

> all nodes shrank (I can now wear shirts that I haven’t worn since

> college since all nodes in my neck have completely disappeared) yet my

> spleen did not shrink very much (about 2-3cm). Thus, although

> treatment would probably be very effective, I cannot currently

> continue since blood counts, even with shots of neulasta, are not

> coming back. Doctors are not sure next steps since it is very

> difficult to treat me. One possibility is to remove spleen, but with

> such low counts, I am a high risk for infection. I don’t seem to be

> a candidate for some newer experimental drugs since I was told they

> could take up to 1 year to work (I saw Keating at MD in

> January about this). Fludarabine and the regime of FCR would probably

> work but again, would lower my immune system even more than Trianda so

> that seems to be out. One last medical point, I have a history of

> blood clots and have been on Coumadin for almost 15 years. I am now

> temporarily off of it due to low platelets.

> >

> >

> >

> > If anyone has any suggestions, I would appreciate it. The key here

> is to either figure out a way to get my counts up and stay up, or

> remove my spleen, or try something else which would not suppress my

> immune system.

> >

> >

> >

> > Thanks,

> >

> > Ron

> >

>

>

>

>