ANTIBIOTIC THERAPY

[Guest guest]

,

There are several websites that will provide you with information. Try the

Road Back Foundation.

Take care,

Jim At 10:44 AM 5/29/00 EDT, you wrote:

> Can someone tell me the name of that book relating to antibiotic thereapy?

>

> Thanks : )

> in Los Gatos

>

>

>

> Please visit our new web page at:

> http://www.wpunj.edu/icip/pa

>

> moderates a chat on arthritis at

> www.about.com on Thursday evenings, so check that

> E mail at RA@... for details.

>

>

[Guest guest]

Hi (don't know your first name),

Welcome to the group. I know that some people get tested for mycoplasma and

other infections. If positive then it helps to get insurance companies to pay.

We're in Australia. My daughter's insurance company here paid for clindamycin

IVs - her doctor just put that her problem was unidentified and he wanted to

try it.

Good luck - perhaps some of the others in the group might have suggestions.

Chris.

>Hi everyone,

>

>I am new to the group but would like to solicit your help. I am trying to

my

>insurance company to pay for IV antibiotic therapy. As of now it has been

>denied. Has anyone run into this problem and been successful with an appeal?

> If so, how did you go about it? Any helpful hints would be appreciated.

>

>------------------------------------------------------------------------

>Accurate impartial advice on everything from laptops to table saws.

>1/4634/0/_/532797/_/959793425/

>------------------------------------------------------------------------

>

>To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

I am rather new to this list. My husband is at the end of his rope, so to

speak, and really doesn't want to take anymore (try anymore) drugs. One thing

we are interested in is Antibiotic Therapy. Has anyone on this list gone that

route? I would be interested to hear your condition before, during and after.

Leckie

NJ

--------------------------------------------------------

This mail sent through BlastNet - http://www.blast.net

[Guest guest]

Hi group,

Nice email from my mailbox today which I thought you'd all like to see - Breda's

email address is lunniss@...

>

> Dear

> You most probably do not remember me, I wrote to you approx 2.5 years

> ago,

> I had RA and had also broken my hip, I was in alot of pain and really

> did not want to live if I had a choice. RA was destroying my life.

> I read the book " Arthritis Breakthrough " but my problem was always

> trying to obtain this medication for RA and not acne, As I live in

> Australia trying to find a doctor that would trust this was not easy.

> I did finaly convince my GP and 3 years later I am still in

> remission.

> I still take Minomycin (100mg every morning) as I'm too scared to

> stop in case I herx or my RA returns.

> My Rheumotolagist still does not believe its the antibiotics, but I

> swear it is.

> I have had RA since I was 6 years old, my worst and most painful

> years were from the age of about 25 on, I am now 36 and quite mobile > and

pain and stiff free.

>

> I had found your wonderful web page and you gave me hope and

> inspiration to keep trying.

> I only wish other people would try this wonderful antibiotic.

>

> I will always be thankful for Dr Brown for finding a cure, he will

> never know just how many people he has helped and how many lives this

> wonderful man has saved.

> I will always be thankful to you all, who have this wonderful web

> page and devote so much of your time in helping others.

>

> THANKYOU ALL AND GOD BLESS YOU.

>

> Regards

> Breda Lunniss

[Guest guest]

Dear Sima :-)

Zanash kindly shared your letter with the rest of us in the

rheumatic.org support group. There are lots of people here who are

more than willing to share their very positive experiences with you.

There is definitely a whole world of hope for you and your daughter.

I just got back from my visit with one of the country's, if not

world's, most skilled and compassionate doctors. His name is Dr. Al

Franco and he happens to live and work in Riverside, CA. See

what I mean about that world of hope!? Dr. Franco and his new

associate, Dr. Lallande, do treat children...and very successfully,

with the antibiotic protocol (we call it the AP). In fact, at my

appointment, there was an eleven year old girl and her mother in the

waiting room. This girl had been coming to see Dr. Franco since she

was five and I gathered that she has been doing very well.

Please feel free to ask any and all questions, OK? We're here for

you.

take care and know that better days are right around the corner :-)

Connie

> > Dear Zanash;

> > I have a six year old daughter with Jeuvenille rheumatoid

arthritis. She

> > has been on steroids for about two and a half

years. ................ Or maybe you can

> > tell me how I can find a qualified doctor in southern california

who

> > does this kind of therapy. I wish you the best on your road to

recovery.

> >

> > Thanks a million

> > Sima

> >

[Guest guest]

Dear Sima,

I am so very sorry to learn of your little daughter. Normally doctors and

even the best of rheumatologists prescribe medicines which just deal with

pain, swelling and general discomfort and the disease keeps on getting

worse. However, with the antibiotic therapy a lot of people have had

remission and I believe it works very well on children.

I have put your mail out to our group and I'm sure someone who knows of a

good doctor in your area, will be helping you out. In the meantime if you

click on www.rheumatic.org you will find details of the antibiotic therapy

plus the FAQ's that will help you to understand the treatment. The results

are best if the treatment is started as early as possible.

I'm so glad that my story has helped in getting you interested in this

therapy and I hope and pray that your daughter recovers fully. Please do

not hesitate to contact me if there is anything else you want to know.

Regards and love to your daughter,

Zanash

antibiotic therapy

> Dear Zanash;

> I have a six year old daughter with Jeuvenille rheumatoid arthritis. She

> has been on steroids for about two and a half years. The doctors want to

> try methotraxate because her symtoms are coming back and they do not

> want to keep her on steroids more than she already has. I am very

> hesitant about giving her methortaxate because of all the horrible

> potential side effects. I got on the internet last night and was

> desperatly looking to see if I have other alternetives and I came about

> the antibiotic therapy.

> The doctors here in Losangeles never mentioned anything about that

> treatment. I dont know maybe it was faith when I came about your

> message and your heart warming story. I appreciate it if you can e-mail

> me and let me know how I can explain this treatment to these doctors who

> sometimes think are god and know everything. There was a mention of some

> kind of protocol in your messege. May be you could send that to me. I

> would be great ful to you in helping my little girl. Or maybe you can

> tell me how I can find a qualified doctor in southern california who

> does this kind of therapy. I wish you the best on your road to recovery.

>

> Thanks a million

> Sima

>

[Guest guest]

Jellicle65@... wrote:

> Dear . I have CREST, SLE & what now appears to be some dermatomyositis

> popping up. I read your story with much enthusiasm as I, too, went to Dr.

> Sinnott to start antibiotics for my mixture of rheumatic ailments. Isn't he

> just a prince?

>

> Tell, me...did you get worse sometimes? I have been on AP for just 4 months.

> I had a BIG HERX initially, then felt better & better...that leveled off a

> bit & now I'm getting some thickening skin on my fingers & a new patch on my

> forehead. It scares me. I know in my head that this takes time, but new

> things popping up are frightening. ANy words of encouragement would be

> invaluable to me.

>

> God Bless You...e

[Guest guest]

Dear e, I do think Dr. Sinnot is a prince. He is a really, really nice

man, a throw back to the days of country doctors who really care about their

patients rather than the money. In terms of visually seeing the disease

progressing, this is something you need to immediately discuss with him. He

first began my treatment with an iv every three months and then five days of

clindy iv's twice daily every six months. During one of my phone calls, I told

him I was back into my " swollen " clothes as my kidneys and bladder were still

acting up along with my sinuses. He did not like that and upped my treatment,

saying he always wants to stay ahead of this disease. From that regime, he took

me to an iv every other week and the five days worth to every three months. In

other words, he doubled it. I thought that was really quite aggressive at the

time as was really pleased but now know that Dr. Sinnott is quite conservative

in

his treatment so that was a big step for him. You probably already know that he

accepts phone calls M-F, except his day off which is Thursday, between 12 and

12:30 MOUNTAIN standard time - ad I don't know where you are so you will have to

refigure that! Just have your chart number ready for Lou and she will get the

chart and him.

I am now doing 1200 mg. of clindy each time from the 900 I started with with

Dr. Sinnott. I stayed on the 900 mg. almost a year and a half and then when I

went south to see this doctor who is so knowledgeabe about supplements, he

boosted me on up to 1200 mg. I put was pretty leary about that dosage so I put

out a call to other SDers here at the site and received back into that they were

already doing that.

One thing you will not get will be information from Dr.Sinnott regarding the

supplements and diet. That is okay. You don't throw out a good doctor just

because he does not know EVERYTHING. My doctor in Texas now is remarkable on

treatment and supplements but doesnot know diet worth a darn but I am working on

him about that. And he is at a seminar now just for that, also, so it will

becoming.

After you have a year and a half of this under your belt, you might want to

consider seeing someone (instead of or in addition to Dr. Sinnott) who does

chelation and hydrogen peroxide iv's to help you even more. I would never have

been ready to do what I am doing before now. I had to get some running room on

me with the treatment and confidence and seeing I had made progress but wanting

more and more. And it might give you some time to save that old money for it

because insurance will not cover it.

Did you see my email to the g roup lately about the supplements I am not on?

Let me know if you did not and I will resend that email to you in order that you

might be on supplements. They DO make a difference and you are going to need

all

the help you can get. One thing Dr. Sinnott probably did tell you is that you

don't take the calcium and magnesium with the clindamycine iv's. And ifyour

vitamin has this, just skip the vitamin at that time. It weakens the work of

othe clindy. Also, sugar is now your enemy. I promise you that within six

months, thsi won't really matter to you in terms of desiring it but in health

terms, it will definitely matter. Get your really good aloe vera juice and

learn

to like it. Ethel Snooks puts out on the net occasionally a really good liver

clease which I use and have acquired a taste for. You want to be sure to take

care of your liver in order to keep on getting your meds because if the liver

numbers go up, the meds have to be stopped.

I sent Roni a few recipes yesterday of things to help her feel like she is

still living in this worth. Things not to be eaten every day but just

occasionally to help her through the time until she does not desire some of the

things we don't need. Let me know if you want them and I will also forward that

email to you. I am always here should you need some support or have questions

but I do urge you to call Dr. Sinnott on Monday. I have been very fortunate in

skin involvement but it definitely is on my hands, cheek and forehead and the

original black grapefruit on my back. So far, it has not gone away for I can

live with this. I do look like myself again and that in itself is a blessing.

But doing all my new things, I am having the herx of fatigue (big herx like

yours

and my first one) and herx in my brain (have done this before) where eyesight

has

again become a bit blurry, brain feels fuzzy and burney, and a terrible sadness

-

the whole herx depression you have read about here. If this happens, recognize

it for what it iis as it is powerful but only temporary and will pass. I have

cried many tears this past week. As I said, had I not been through this before,

this kind of herxing would have been even worse, and it is awful now, but time

has proven to me that the drugs are in there working where they should be so as

much as you can, embrace those herxes and know those drugs are trying to do

their

job and clean house.

And my last advice is not to lurk on here but to get in here and partcipate.

What you are going through, someone else will recognize and you will be helping

someone else - which in terms, helps you. As you n otice, I posted my response

to you on the group site because there just might be someone else in yours or my

shoes out there needing to read this.

Let me hear from you and I welcome you warmly to this wonderful site. And

you

will love Dr. Sinnott if you don't already. Love, SAndra

Jellicle65@... wrote:

> Dear . I have CREST, SLE & what now appears to be some dermatomyositis

> popping up. I read your story with much enthusiasm as I, too, went to Dr.

> Sinnott to start antibiotics for my mixture of rheumatic ailments. Isn't he

> just a prince?

>

> Tell, me...did you get worse sometimes? I have been on AP for just 4 months.

> I had a BIG HERX initially, then felt better & better...that leveled off a

> bit & now I'm getting some thickening skin on my fingers & a new patch on my

> forehead. It scares me. I know in my head that this takes time, but new

> things popping up are frightening. ANy words of encouragement would be

> invaluable to me.

>

> God Bless You...e

[Guest guest]

(in) an article in

> Arthritis & Rheumatism 2001; 44( 5): 1043-1047. " The effects of

intravenous

> doxycycline therapy for rheumatoid arthritis: A randomized,

double-blind,

> placebo-controlled trial "

the abstract says:

>...The trial was stopped prematurely after 31 patients had been

> enrolled because three patients

experienced

> worsening arthritis....

This actually accords completely with my experience on antibiotic

therapy. (though I take doxycycline orally, not injected as was done

in this study.) If you read at the Road Back Foundation site, you

will see that temporary worsening is a good sign that the antibiotic

is goingto work- it is called a Herxheimer reaction, or " Herx " for

short- a well-known reaction in many diseases when a drug attacks an

infectious organism and the body reacts to the breakdown products of

the dying organisms. If I read correctly, this trial was stopped

after only 11 weeks. This is a great shame, because it is entirely

typical that people first have either no reaction, or get worse (I

had a terrible time for several weeks), and that it is many months

before the real improvement starts (about six months for me), though

there are exceptions, mostly in mild or early cases of the disease.

The NIH trial of minocycline for RA (mino is a close relative of

doxy) was 48 weeks, and showed good results. O'Dell's continuing

study was last reported after four years, by which time 40% of the

people who had started on antibiotics were off all drugs and symptom-

free,vs 6% of those on standard DMARDS.

Certainly, I don't know why these researchers didn't take this into

account, but I do know that this is an entirely typical attitude

toward antibiotic therapy from the rheumatological mainstream: they

know antibiotics only as very fast-acting drugs, usually taken for a

week or two, and so 11 weeks is a " long time " by that standard.

Also, if you don't believe in an infectious cause of arthritis, the

Herxheimer reaction makes no sense- there is no organism to die and

cause it, so worsening is taken as a sign that the antibiotic is

making the disease worse. My doctor, who had no experience with the

antibiotic therapy when I pleaded with him to do it, pooh-poohed my

" Herx " at first, but then as I began to get better, and after a year

was well on my way to remission, he changed his mind.

I have to say, I have gotten extremely discouraged that so few people

on this list seem to have taken my posts about antibiotic therapy

seriously at all. The attitudes of most rheumatologists toward it

are certainly largely the cause. I get so very sad and frustrated to

read all of the posts by people suffering so badly, when I am

absolutely convinced, by my own experience as well as the more than

10,000 patients treated by Dr. Brown and others, that this is the way

to beat this disease- not just cope with it, but beat it- for most of

us. I can only plead that you read the book, " the New Arthritis

Breakthrough " by Henry Scammell and McPherson Brown, which

presents the evidence much better than I can. Even if you aren't

convinced about the treatment, the insights of Dr. Brown on many

aspects of the disease are so wonderfully compassionate, and

accurate, and will help your understanding and coping with depression

(which he was convinced is an organic part of the disease, and NOT

just " all in our heads " ) and many other aspects of life with

arthritis.

Thank you, , for posting the abstract of this paper- I had just

heard of it, but hadn't tried to find it myself yet. I would welcome

further discussion.

Very best wishes to all-

[Guest guest]

on 6/11/01 11:19 AM, jbgreenly@... at jbgreenly@... wrote:

>

> (in) an article in

>> Arthritis & Rheumatism 2001; 44( 5): 1043-1047. " The effects of

> intravenous

>> doxycycline therapy for rheumatoid arthritis: A randomized,

> double-blind,

>> placebo-controlled trial "

>

> the abstract says:

>

>> ...The trial was stopped prematurely after 31 patients had been

>> enrolled because three patients

> experienced

>> worsening arthritis....

>

> This actually accords completely with my experience on antibiotic

> therapy. (though I take doxycycline orally, not injected as was done

> in this study.) If you read at the Road Back Foundation site, you

> will see that temporary worsening is a good sign that the antibiotic

> is goingto work- it is called a Herxheimer reaction, or " Herx " for

> short- a well-known reaction in many diseases when a drug attacks an

> infectious organism and the body reacts to the breakdown products of

> the dying organisms. If I read correctly, this trial was stopped

> after only 11 weeks. This is a great shame, because it is entirely

> typical that people first have either no reaction, or get worse (I

> had a terrible time for several weeks), and that it is many months

> before the real improvement starts (about six months for me), though

> there are exceptions, mostly in mild or early cases of the disease.

>

> The NIH trial of minocycline for RA (mino is a close relative of

> doxy) was 48 weeks, and showed good results. O'Dell's continuing

> study was last reported after four years, by which time 40% of the

> people who had started on antibiotics were off all drugs and symptom-

> free,vs 6% of those on standard DMARDS.

>

> Certainly, I don't know why these researchers didn't take this into

> account, but I do know that this is an entirely typical attitude

> toward antibiotic therapy from the rheumatological mainstream: they

> know antibiotics only as very fast-acting drugs, usually taken for a

> week or two, and so 11 weeks is a " long time " by that standard.

> Also, if you don't believe in an infectious cause of arthritis, the

> Herxheimer reaction makes no sense- there is no organism to die and

> cause it, so worsening is taken as a sign that the antibiotic is

> making the disease worse. My doctor, who had no experience with the

> antibiotic therapy when I pleaded with him to do it, pooh-poohed my

> " Herx " at first, but then as I began to get better, and after a year

> was well on my way to remission, he changed his mind.

>

> I have to say, I have gotten extremely discouraged that so few people

> on this list seem to have taken my posts about antibiotic therapy

> seriously at all. The attitudes of most rheumatologists toward it

> are certainly largely the cause. I get so very sad and frustrated to

> read all of the posts by people suffering so badly, when I am

> absolutely convinced, by my own experience as well as the more than

> 10,000 patients treated by Dr. Brown and others, that this is the way

> to beat this disease- not just cope with it, but beat it- for most of

> us. I can only plead that you read the book, " the New Arthritis

> Breakthrough " by Henry Scammell and McPherson Brown, which

> presents the evidence much better than I can. Even if you aren't

> convinced about the treatment, the insights of Dr. Brown on many

> aspects of the disease are so wonderfully compassionate, and

> accurate, and will help your understanding and coping with depression

> (which he was convinced is an organic part of the disease, and NOT

> just " all in our heads " ) and many other aspects of life with

> arthritis.

>

> Thank you, , for posting the abstract of this paper- I had just

> heard of it, but hadn't tried to find it myself yet. I would welcome

> further discussion.

>

> Very best wishes to all-

>

I BELIEVE YOU JOHN!!! Actually, I've seen a lot of people respond

favorably to your posts. It's brought about a lot of discussion and I've

read more than one post of people who plan to talk to their doc about it.

Don't let one poorly done study get you down.

I plan on making reports on my progress as soon as I start the antibiotic

regime. Right now, my main obstacle is getting my doc to call me back so we

can talk about it!

Altho undiagnosed, I believe I've had PA for about 4 years and haven't had

any DMARD's in my system yet. I think I also told the group about a fluke

chance where I had to take an antibiotic for an infection and had incredibly

good results immediately, but didn't make the connection until now.

I do get frustrated by all the negative info out there. " There is no cure! "

You see it on all the sites...even in bold on the about.com site. It's

almost like people have been in pain for so long that they don't want to

hear that something can be changed...that they suffered needlessly. Well I,

for one, won't accept that. I'm prepared to live with arthritis for the rest

of my life, but not without hoping and working toward a cure. This is my

first step toward taking action against this disease.

*gets off soapbox* hee

Thank you for all your great information and genuine care for all of

us. I do appreciate it!

deano

[Guest guest]

Wanted tolet you know that I'm persuing the antibiotic protocol. I've

recently read the book as well as everything on the roadback.org web site

including other linked sites. I have no doubt that it will cure my pa.

Since neither my md or my rhuemy would follow the protocol, I printed out a

list of all md's on my health plan within 15 miles of my house and started

calling them one by one. After @ 1/2 hour I found a md who specializes in

internal medicine & infectious diseases who said he will do it.

My 1st visit is tomorrow. I'm gonna get better, !!!!!

King

[Guest guest]

Hey here. I went to see my GP recently amd we were discussing

antibiotic therapy for arthritis. He opined that perhaps antibiotics

made people feel better because they had an anti-inflammatory

effect. I wonder if any studies have proved that they actually

stopped damage to joints as well as make you feel better. My

experience with Zithromax taken two weeks in a row for a sinus thingy

was that the first week I felt better and the second week I felt much

worse. Lately i have been having a flare all over my body. This after

having taken Mobic for a week and then gone off it. Didn't hurt like

this before i took it. I hear people say all the time that when they

go off anti-inflammatories they feel much worse. Now what is that, I

wonder? Anyhow I am getting ready to drive 7.5 hours to see my

family. Wish me luck, I'm gonna need it. I'm taking lots of food

because eating is the only thing that helps the pain.

[Guest guest]

In a message dated 06/14/2001 12:59:00 PM Eastern Daylight Time,

paulking11@... writes:

<< My 1st visit is tomorrow. I'm gonna get better, !!!!! >>

Best of luck !! Great positive attitude - and I'm glad you found a doctor

who understands the protocol and will work with you. Please keep us posted

on your results!

[Guest guest]

In a message dated 6/14/01 9:58:29 AM Pacific Daylight Time,

paulking11@... writes:

> . I'm gonna get better, !!!!!

>

>

paul,

good for you.....i pray it works well.

chicagoland sharon

[Guest guest]

,

As far as I can tell, there is no relationship whatsoever between the

" Jaffe-Mellor Technique " and Antibiotic Therapy (the subject of your post). If

you are interested in antibiotic therapy however, there is an excellent website

about it at:

http://www.rheumatic.org/

and there's a discussion group for it at:

rheumatic

Regards,

-- Ron

>

> Hi PA Group;

>

> I joined the group a couple of weeks ago. I have had PA for about 5 years or

more. I have the typical symptoms that I have been reading about. I am

intrigued by some of the therapies and treatments that I have been reading

about. There is one in particular that I am presently researching. The

Jaffe-Mellor Technique. Judging from some of the reading that I have done, it

could have promise. Hopefully. Does anyone here have any experience with this

technique??

>

> Thank You.

>

> Winski

>

[Guest guest]

Actually there seems to be a relationship. To the best of my knowledge,

antiobiotics kill organisms. The Jafee-Mellor technique attacks organisms that

cause the arthritis as their theory goes. I agree, its not the same as

antibiotic therapy, but seem to go after the same thing. Thanks for your

feedback.

Ron S Dotson <rkba@...> wrote: ,

As far as I can tell, there is no relationship whatsoever between the

" Jaffe-Mellor Technique " and Antibiotic Therapy (the subject of your post). If

you are interested in antibiotic therapy however, there is an excellent website

about it at:

http://www.rheumatic.org/

and there's a discussion group for it at:

rheumatic

Regards,

-- Ron

>

> Hi PA Group;

>

> I joined the group a couple of weeks ago. I have had PA for about 5 years or

more. I have the typical symptoms that I have been reading about. I am

intrigued by some of the therapies and treatments that I have been reading

about. There is one in particular that I am presently researching. The

Jaffe-Mellor Technique. Judging from some of the reading that I have done, it

could have promise. Hopefully. Does anyone here have any experience with this

technique??

>

> Thank You.

>

> Winski

>

[Guest guest]

I stopped taking the sulfasalazine primarily because it is so hard on your

liver.

[Guest guest]

In a message dated 8/13/2001 3:55:06 AM Eastern Daylight Time,

sierra4733@... writes:

<< I understand that the Antibiotic Therapy is based on the theory that

inflammatory rheumatic diseases have an infectious cause, namely

mycoplasma and other bacterial forms. If this is true-how does one

explain the natural remissions that occur with PA? >>

I have another question to add - If it's caused by some sort of infection,

why didn't all the antibiodics I've taken for stress, bronchitis, ear

infections, etc. ever kill that bacteria too?

[Guest guest]

Please do keep us posted, I'm curious about this antibiotic therapy and

might start researching it before I go to p.d. I hope it works for you and

eases your pain!

Brightest Blessings,

Dayton, Ohio

>From: sierra4733@...

>Reply-

>

>Subject: [ ] Antibiotic Therapy

>Date: Wed, 22 Aug 2001 02:14:21 -0000

>

>Hi Folks,

>

>I just wanted to touch base with everyone and let you know that I have

>decided to try the Antibiotic Therapy. I met with my rheumatologist

>last week to review different treatment options. Originally I wanted

>to try minocin and sulfasalazine simultaneously in addition to

>celebrex, but she only wanted to add one new drug at a time so we

>could monitor the reactions. I thought that this was reasonable and

>decided to go with the minocin (antibiotics) first because they seem

>to be less taxing to the body over the long haul.

>

>I was quite surprized that my rheumatologist was so willing to try

>this treatment because she usually isn't very optimistic about

>therapies that are not mainstream. To my delight she informed me that

>one of her patients with rheumatoid arthritis was doing quite well

>after stopping MTX and going on minocin. However, she also informed me

>that there havn't been extensive studies regarding this treatment so

>the jury is still out.

>

>My rheumatologist prescribed minocin 100mg 2xs per day 7 days per

>week. From everything that I have read it recommends that you start

>out on 100mg minocin on Monday, Wenesday and Fridays. Will someone

>please comment on this who is familiar with this treatment. So far

>I've decided to ease into it by taking 100mg on MWF but don't want to

>put off faster improvement if I can handle a larger dose right away.

>

>I will keep you appraised on how I make out with this treatnment in

>case you are considering trying it. I will still probably add

>sulfasalazine in a couple of months for added assurance. I just found

>out that I have had some erosion to my wrists and really want to try

>to cover all bases if possible.

>

>Best wishes to everyone,

>

>Joe Godfrey

>

>

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[Guest guest]

Joe , Just so you know...... You might feel much worse during the first 2 to

3 weeks...... I've been on minocin for 5 weeks now.... And I felt awful

after 2 weeks.... But then after that it got better...... Its the dying off

of the organisms... And if you do feel worse like I did, that is a good

thing (from what i hear).... It means that its reaching its spot and doing

its job.... I'm only on 50mg's twice a day but I think it will be upgraded

to 100mg twice a day just like you ..... You might feel dizzy and

nausuated too after taking it.... I sure did... But this goes away and the

side-effects are less harsh if you take it with food... You may recieve no

side-effects at all.... Just wanted to give you a heads up... this group is

also really good with anti-biotic therapy -

rheumatic-subscribeegroups Alot of them use minocin aswell.....

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Message: 17

Date: Wed, 22 Aug 2001 02:14:21 -0000

From: sierra4733@...

Subject: Antibiotic Therapy

Hi Folks,

I just wanted to touch base with everyone and let you know that I have

decided to try the Antibiotic Therapy. I met with my rheumatologist

last week to review different treatment options. Originally I wanted

to try minocin and sulfasalazine simultaneously in addition to

celebrex, but she only wanted to add one new drug at a time so we

could monitor the reactions. I thought that this was reasonable and

decided to go with the minocin (antibiotics) first because they seem

to be less taxing to the body over the long haul.

I was quite surprized that my rheumatologist was so willing to try

this treatment because she usually isn't very optimistic about

therapies that are not mainstream. To my delight she informed me that

one of her patients with rheumatoid arthritis was doing quite well

after stopping MTX and going on minocin. However, she also informed me

that there havn't been extensive studies regarding this treatment so

the jury is still out.

My rheumatologist prescribed minocin 100mg 2xs per day 7 days per

week. From everything that I have read it recommends that you start

out on 100mg minocin on Monday, Wenesday and Fridays. Will someone

please comment on this who is familiar with this treatment. So far

I've decided to ease into it by taking 100mg on MWF but don't want to

put off faster improvement if I can handle a larger dose right away.

I will keep you appraised on how I make out with this treatnment in

case you are considering trying it. I will still probably add

sulfasalazine in a couple of months for added assurance. I just found

out that I have had some erosion to my wrists and really want to try

to cover all bases if possible.

Best wishes to everyone,

Joe Godfrey

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[Guest guest]

I never felt really bad taking minocin, just a little " achy " and I've

found that taking a Benadryl at the same time as the minocin helps

reduce the aches (to nothing in my case).

-- Ron

> Joe , Just so you know...... You might feel much worse during

> the first 2 to 3 weeks......

[Guest guest]

> I am now waiting for my appointment (next week) with a Rheumy who

> works with this protocol. I'm quite hopeful as the disease is in a

> fairly quiet state right now.

> I was wondering if this therapy seems to be more effective in men

> than women. The positive results posted here are overwhelmingly

from

> men.

> Also, if any of you who have tried this have any specific

suggestions

> on either what to ask or what (that isn't in the literature) to

> expect or watch for, I'd really appreciate your input.

>

Hi - It's great that you have found a doc who is experienced

with the antibiotic protocol. I would say, go with what he says! As

far as I know, there is no evidence it works better for men- I think

this is a coincidence here. Keep us posted- if you have questions or

concerns as you go along, I'd be glad to talk further, here or by

email. Good luck!!

best regards, Greenly

[Guest guest]

Hi , If you haven't visited the " Road Back Foundation " site,

please go and have a look. It's full of information re: antibiotic

protocol and there are plenty of folks who can help with info on the

support group. I have had some improvements, but we are all different

in our responses to this therapy, so you can't measure yourself by

someone else's progress. The important thing is to hang in with it

and give it a fair trial. Best wishes for your successful response to

AP. Take care, Lorraine

[Guest guest]

there's tons of great info on:

www.roadback.org

www.rheumatic.com

and another chat group rheumatic

I do not believe sex has any bearing on success factor.

Best of luck, it is by far the best route of all that I've tried.

[Guest guest]

-I have followed this anibiotic approach for a while and I am hopeful

as you are that this might be [part of the answer, the only problem I have is

what happens when the body buils a resistance to the antibiotic? which is

precisely why

medics are advising against the overuse. I'm sure this has been taken into

consideration and would like to hear more, I plan to ask my rheumy at my

visit, thanks

Southside Ed