antibiotic protocol

[Guest guest]

Dear Corgi, First send an email to rheumatic-subscribeegroups and just

say, please subscribe me. I think that will do the trick. If it does not and

you do not get any of the support group email, let me know and I will get the

head of the group (she is in New Zealand) to subscribe you.

In regard to your question about how I feel about the doctor who called this

quackery, I think his ego and arrogance have outgrown the size of his brain.

All

he has to do is to read at our site and hear how many of us are getting better,

maybe really slowly, but getting better. Go to the site www.rheumatic.org/ and

read the medical histories and success stories. Any questions you have, just

write in at the support site once you are subscribed and someone will try to

have

the answer for you.

I do not know how debilitated you are at this time with the disease, your

age, your circumstances but from your note, I am guessing you are living alone.

That makes it twice as scarey, doesn't it? I am in a herx at the moment as I

have just completed a round of five days of clindamycine iv's and I am not

having

a good time but what it does is to show me that unless I do something, I am

going

to feel like this in the future a lot! Some people herx while they are doing

the

iv's. I was pretty cocky the first time and came home feeling better than ever

and then it hit about 1 1/2 weeks later. I sleep more than during ordinary

times

and hurt in the area where the antibiotics are attacking the toxins but

truthfully, this is not something to fear. You probably are at a point in your

disease where pain is not a stranger and the knowledge that there is something

on

the other side of it lends a lot of motivation. And as I made a comment at the

site the other day, our group is growing quickly and if the herx was something

horrible, the group would not be growing. The other point I need to make is

that

if the herx is something so terrible you cannot stand it, then you back off of

the meds, adjust them to where your body will tolerate them. I have been

fortunate that I never had to back off and six months ago, my doctor doubled the

amount of clindamycine iv's in a more aggressive attack to stay ahead of it.

Regarding the rhemy, there are several on our lists at the support site who

provide the antibiotic treatments but a LOT of GP's and naturopathic doctors.

My specialists missed my disease and then only wanted to treat my symtoms

rather

than help me work toward remission. I changed doctors.... My main doctor, who

is absolutely my security blanket, is a GP and my local doctor here in between

my

trips to the other, is a neurologist here in town who provides chelation to

patients and clindamycine iv's to me. Where are you located? Maybe this group

can help you find someone closer. However, if this doctor is already giving you

doxy, maybe he will also do the clindy iv's for you? And as far as who will

help

you get through the herxes, I don't think the doctors are going to be able to

sit

there with you but the support group is where you will want to go moan, groan

and

celebrate each tiny, tiny step.

When you go to the www.rheumatic.org/ site make sure you also go to all the

sites and read everything there. Maybe you should think about copying all the

studies and stories etc., everything you can, for your doctor, and when you see

Dr. Mercola and Notes from a Phsician, copy these diets down for your own

benefit. I am not a saint diet wise but do hold back considerably on wheat,

sugar, no caffeine and dairy. Anything I can do to help my body to help itself

is what I try to do.

I hope this letter will be of help to you. I have posted it at our site so

that others can see you are coming our way and what some of the doctors out

there

are still doing. That is so sad. Love,

CorgiWon@... wrote:

> Hi ,

> Monday night Dr. Siebold (a biggie scl specialist) was on the AOL scl

> chat. At the end of the chat, he made the statement that antibiotic protocol

> was " quackery " . I emailed sherry and she wrote back he had always said that

> adamantly. The first time I have ever heard a doc supposedly in theknow

> saying sucha thing. Whadda ya think?

> Also I am interested in starting the chats now. My concern is that I

> have no good rheumy and if i go into those " herxes " (sp?), who can take care

> of me? I have the Doxy and am wanting to set a home base with you guys to

> talk me through at times. Can you once again sdend me the link for those

> chats? God bless dear., Hope you are continuing to do well. Corgi

[Guest guest]

Steve,

I've had Psoriatic Arthritis for at least 10 years (probably longer,

but it was undiagnosed until 1991). I have been taking Lederle

pelletized Minocin for about eight months so far, and can personally

testify that the improvement in my own condition is enormous. I still

have occasional minor aches and pains and some morning stiffness, but

it is totally insignificant compared to what it used to be like. The

best part of the whole thing for me, is that I no longer have the

constant debilitating fatigue that I used to experience all the time,

that made life seem almost like it wasn't worth living.

In the winter of 2000, I was virtually bedridden with a flare up in

my sacroiliac joint and was in constant pain for almost a month. It

and the fatigue were so bad, that afterwards I asked for a reduction

in my work hours from 40 hours per week to 20 hours (afternoons only)

in order to allow two or three hours to limber up in the morning, and

to get the 10 to 12 hours of sleep that I needed every night. This

past winter I've never felt better. I have lots of energy, and only

rarely do I have a day in which my arthritis interferes with my

normal routine. I'm tempted to ask to go back on a regular 40 hour

per week schedule, but I want to wait until I'm sure the improvement

is permanent - and besides, I gotten to like having the free time

off. :-)

Here are some links to studies and articles that show antibiotics do

improve various rheumatic conditions.

-- Ron

rheumatic/message/24504

rheumatic/message/24505

rheumatic/message/24506

rheumatic/message/24507

rheumatic/message/24508

rheumatic/message/24509

rheumatic/message/24510

rheumatic/message/24511

rheumatic/message/24512

rheumatic/message/24513

rheumatic/message/24514

rheumatic/message/26060

http://www.docguide.com/news/content.nsf/NewsPrint/8525697700573E18852

56AF000560916

>

>

> I know that many of you are on the antibiotic protocol and using

either

> doxycycline or minocycline but for those who are about to start the

AP or

> considering starting two articles one in Nov and one May last year

indicate

> that in double-blind placebo trials that doxycycline produced no

significant

> improvement in the subject's RA. One study with minocycline

in '98, I believe,

> did show some marked improvement in RA in patients with early RA

but no

> improvement where the patient had had RA longer than a few years.

>

> Cheers,

>

> Steve

[Guest guest]

Thatcher wrote:

>

> I know that many of you are on the antibiotic protocol and using either

> doxycycline or minocycline but for those who are about to start the AP or

> considering starting two articles one in Nov and one May last year indicate

> that in double-blind placebo trials that doxycycline produced no significant

> improvement in the subject's RA. One study with minocycline in '98, I

believe,

> did show some marked improvement in RA in patients with early RA but no

> improvement where the patient had had RA longer than a few years.

I think I saw one of those articles. I interpreted it to mean that

although it might not help RA necessarily, it might still be of help to

those of us with PA, at least sometimes. Although the two diseases are

considered the same by some rheumies -- and probably do share some

symptoms etc. in common, I think there are probably also enough

differences to mean that we shouldn't automatically rule out doxy's use

unless and until we've had a need and opportunity to try it. Also, ya

never know -- there might be enough individual differences in cases of

RA to warrant its use, depending on the underlying cause. I'm certainly

no expert but I believe I've read where some mycoplasmas respond to

doxy; others to mino.

Anyway, thanks for the opportunity to bring this up. (I forgot the time

frame involved, though: Do you know how long those trials went on? Some

patients, especially with long-standing disease, which is probably a

given for those of us with PA, take literally years to improve, which

might not show up in a trial of months.)

--Louise

[Guest guest]

RA and PA are two different diseases...linked, but not the same. Study

or not, I know several people on continual remission using AP with

doxycycline.

[Guest guest]

minocycline has given me my old life back.

I'm not saying it wil work for everyone, but most of the studies done on the

effectiveness of minocycline & doxycycline come out quite favorable.

[Guest guest]

When we were going to possilby give my son anitbiotics for an ear

infection (thanfully it cleared itself up), his peditrician said he

sould go on nystatin while on the anti's. He was already on

culterelle.

Jena

> Hi all,

>

> My son is needing antibiotics (per his m.d.) for a sinus

infection. I was

> wondering how you all would go about giving antibiotics? With

probiotics? or

> more probiotics? with a yeast killer? We are on probiotics once a

day, but I

> wondered if we should up the amount. Thanks.

>

> Liz N. (IN)

>

>

>

[Guest guest]

Ray,

As a health professional myself, I can tell you that the antibiotic protocol by

Dr. Brown is considered today to be convemtional treatment by standards of the

American and Canadian Asociations of Rheumatology. It is also inscribed in the

books and reading materials of the Arthritis Society from the US and Canada.

The www.rheumatic.org site is a support group as this one is. It offers

information just as this one does. It does not sell the antibiotic protocol.

What I do know about the antibiotic protocol is that there has been may great

responses. If it didn't, the rheumatologists associations wouldn't be accepting

this as conventional, nor would it be in th PDR physicians desk reference or CPS

as a treatment for arthritis. I am sure you know these are books used by every

doctor and pharmacist in the country.

If the antibitoic protocol doesn't work, yes, it may mean the treatment is not

for the person, but it doesn't mean it doesn't work. It can mean alot of

different reasons, such as the doctor prescibing it doesn't know the protocol

nad hasn't given it properly. Or people may misread the symptoms, if they do go

worse it may be from a herxeimer effect which is well-known in antibiotic

therapy for any illness. This is a temporarry worsening of the condition.

There are some people who don't follow simple instructions or pharmacists not

giving the correct information on how to take the antibiotics. Minocin should

not be taken with milk products or iron. It will not be absorbed by the body if

taken within two hours .

I can also say that my own personal experience with the antibiotic therapy was

extraordinary. It gave me back my life. I no longer need it today. I passed very

detailed testing and Klebsiella pneumonaie was found in my lungs. Klebsiella is

normally found it the gut. If you look into medical literature, Klebsiella is

one of the factors causing ankylosing spondylitis.Therefore antibiotic therapy

is recommended through Clindamycin as an antibitoic of choice which is what I

had.

I think it is important to give the right information concerning medical

treatments. I think it is one of the reasons this group exists. It supports and

provides information to people and allowing people to make their own decisions.

I work in research and everyday we learn new treatments for all sorts of

diseases. Years ago, we would have not accepted supplements as possible

treatments. Yet, things like Reservatrol is being considered as a prescription

medication for cancer treatments because it has been effective with cancer. This

you can find in British Medical Journal, The Lancet, etc. Caridazem is actually

a plant that turned prescription. So, you never know how things turn out with

time.

[Guest guest]

Ray rote

> Our disorders can be quite frustrating.

The understatement of the new millenium.

+Dave

AS/RS/PA/RA, Parkinson's, Type II Diabetes

Older than dirt

" Everyday I beat my own previous record for number of consecutive days I've

stayed alive. "

[Guest guest]

Sure we need to look on the bright side Ray! But the 'truth' as you

know Ray, is that vested interests are also responsible for keeping the

arthritis industry in denial (business) about the true causes of these

so called immune disorders, which are nothing more than Mycoplasma

infections or similar (CWD) Nano-bacteria.

The commonly prescribed immune modulators are a menace to the immune

system and this is what is ALWAYS prescribed by that 'old boys club'

the Medical Establishment. It is simply ignored that abx are

successful, albeit I would agree not perfect. The truth is if the

infection is allowed to fester for long enough untreated (with abx)

then in all likely hood it may be the case that one who was highly

infected with 'cell wall deficient' (CWD) forms of nano-bacteria and

alike, such as those with Lyme, find that although abx bring about

relief and a halt to the infection, when they discontinue abx symptoms

re-arise.

That is the down side, and on the up side following on from the good

work of T. Brown (Roadback), Trevor Marshall (sarcinfo.org) may have

indeed found the next breakthrough in these enigmas. He is not peddling

any books (strangely) and has nothing to sell, nor does he ask for

contributions! Though he is in consistent contact with all those taking

Benicar or thinking about trying the Marshall Protocol (MP) through the

internet.

The last time I heard of such a maverick was in the form of that other

Marshall, (Barry, no relation) the one who is responsible of curing

stomach ulcers, and gastronomic disorders, by way of abx no doubt. He

too was ignored by the 'old boys club' for over 12 years until he took

a solution of bacteria in his own body and induced 'infection' then

cured himself with abx. The trouble maker H.Plyori (and Brown) in now

recognized. Alas I cannot help but wonder if the Pharmaceuticals may

have been disinterested in this new cure, since there biggest selling

products at that time were anti-acids, known on the inside as the

'Zantac' years.

More information about that conspiracy can be seen here:

http://www.orc.ru/~yur77/pylori.htm

I think all who are facing ReA would be doing themselves a serious

disservice if they were to ignore anything that was not considered by

the 'establishment' to be worthy of interest!

Sincerely

[Guest guest]

In a message dated 6/24/2004 5:33:15 PM Eastern Daylight Time,

flight1@... writes:

I think it is important to give the right information concerning medical

treatments

You mentioned that the American and Canadian Rheumatology

Associations approve the " antibiotic protocol " (by Dr. Brown and the Road

Back foundation) for the spondyloarthropathies. I've researched literally

hundreds of recent (2004) abstracts from both " medical societies " and all agree

that

the use of long term use of antibiotics for the spondyloarthropathies is not

the conventional or suggested treatment programs for these diseases.

Antibiotics may be prescribed to get rid of the initial triggering agent (like

Chlamydia) in Reactive arthritis, but only if started soon after the infection.

Antibiotics are not used for any of the other spondy diseases....especially

Ankylosing spondylitis....with the exception of Sulfasalazine.

I hate to see anyone struggling with such a debilitation disease to be lead

to unconventional treatments when we finally have medicines that have been

approved and tested to be effective for most.

Please ask your Rheumatologist before attempting this protocol.

http://www.aafp.org/afp/20040615/2853.html

http://www.medscape.com/viewprogram/2802

http://www.asresearch.co.uk/spondyloarthropathies.htm

[Guest guest]

Steve, and e,

Thanks for your reasoned and well stated responses. Leaps in treatment come

from many different angles, some often too unconventional for the medical

community to easily accept.

Antibiotic therapy is an accepted protocol for many diseases and syndromes now.

Like antibiotic therapy for stomach ulcers, it may take awhile for everyone in

the medical community to come on board.

I did take the Minocin therapy protocol several years ago. I had to discontinue

it because it caused liver malfunctions. Yes, I took it according to Dr.

Brown's protocol as prescribed by my physician. I took it faithfully for a very

long time. Some improvements in some symptoms were seen, some symptoms remained

unchanged.

Mycoplasm research is ongoing and will provide many 'clues' to treatment in the

future. Of that I am sure. I tried to follow the research but it became too

technical for me to understand and I'm not a dummy.

Playing the devil's advocate on this list is one way to turn up knowledgeable

people who can inform us correctly on certain topics. Thank you for your

responses.

Ray Neal, moderator

[Guest guest]

People at www.kickas.org (anyylosingspondilitis group) are using abx on

a regular basis.

[Guest guest]

I have been reading KickAs posts for years. There are a few posts talking

about antibiotic protocol and the starch free diet, but most of the best results

have been from the new biologics...Enbrel, Remicade and Humira. I don't think

it is wise to connect the conventional medical profession as having conspiracy

tendencies against the use of certain drugs used to treat our disease. Most

all board certified Rheumatologists are concerned for our health and seek out

the best and latest treatments for each of us, individually, and takes into

consideration our symptoms and disease activity and will prescribe accordingly.

Like I mentioned, antibiotics may be Rx'd for a short time to rid the body of a

certain bacteria, but the use of long term antibiotic therapy is not

recognized for use in AS. People who have tried this and say they have received

a

CURE, have only gone into a common remission period or they do not have AS. Many

Reactive arthritis (Reiter's) patients will go into a remission period after 6

months with just the use of NSAID or no drugs at all. As far as the Starch

Free Diet for spondy goes, many have tried it and say they have success. I tried

it for several months and thought it helped a little in the beginning, but

found that not to be of long term value. I have IBD with AS....and the IBD

flareups seem to come and go.

Best regards, Connie AS/IBD/Uveitis/Glaucoma

[Guest guest]

Hi Granny, I'm new to using a computer and also new to new to finding out about

Ankylosis Spondylitis which I was diagnosed with in April 2003. I also had

uveitis of both eyes. The eyes are under control. I currently take

Methotrexate20 mg. injections once a week and Vioxx 25mg. daily From what I

understand Mtx. is the only tx. that keeps helping the eyes after being weaned

off prednisone drops. I also have joint and back pain but it's tolerable. I know

mtx. is a nasty med, but I just want to know if there's any alternative. My Doc

says no because of my eyes. Does anybody out there know. My first grandchild was

born in August of 2003 and I wish i could do more . Thanks, Anne

[Guest guest]

I tried minocycline 100 mg (considered the " low dose " protocol) and after 2

years of taking it faithfully everyday, still had not improved. My AS was just

as bad and so I quit the " experiment. " People have told me that I should have

given it 5 years.....just my experience with the antibiotic " cure. " Debby

[Guest guest]

The abx protocol needs to be played about with to see what are the best

abx for each person. Also combining abx helps in many cases too. Plus

with the AS a low starch diet is recommended. I would also suggest, as

I said before that albeit the abx are a god send for some, others

rather just manage to stabilize their symptoms, since a lot of damage

has already been done. The last thing just to say also is that the

bacteria are smart and can can avoid the effects of the abx, that said

the Marshall protocol would appear to be the missing link in that

enigma.

[Guest guest]

Greetings Anne,

I'm sorry you had to look us up trying to learn about uveitis. Sometimes

women have a lighter case than some men, so I'm going to pray that will be your

fate. Mine was pretty much the normal flares in the beginning, but I had a ten

year remission before everything broke loose. IBD/Uveitis and now glaucoma.

During the early years we only had Indocin to use (it is one of the stronger

NSAID. I took it for almost 20 years before it started to bring up high kidney

levels. I tried all the ii drugs (Vioxx, Celebrex) and they did little for

the

inflammation and pain. Narcotics were used for ten years with a bunch of

other stuff...when Darvocet no longer worked. I was having so many problems with

my eyes...the dr. put me on Methotrexate...gradually adding dose to 25mg. That

didn't do the trick.....so she added the Humira. That has been my God send

med. I do things I couldn['t do last year. She has cut the Mtx back as she

increased my Humira to 2Xwk and these doses are helping very much. I am no

longer

taking any drops for my eyes. Before this I was on constant Pred/dilation drops

for the last 6 years. My vision at night is not too good....distortion. But

some days are very good and I am back doing family portraits in char pencils.

(usually with one eye, no not on the protrait...teehee one eye on me.) You get

used to it. . At least I have one eye that doesn't get uveitis, only but

rarely. Anne, I hope the MTX works for you. It didn't do too much for my eyes

that

we could tell, but since I couldn't take NSAID anymore...dr wanted me on some

kind of anti inflammatory....that's why the high dose. The vitrectomy helped me

the most...sucked all the junk out from the middle of my eye. and now I

see....but the distortion from the implant surgery complication makes everything

very sharp/bright, but wavy. Try to read a book with wavy lines in the middle of

your vision. Impossible. I'm getting good at staring in the middle but trying

to read the letters that are all around the center work. HArd to do...but not

impossible. Okay, friends. Hope all are well...it seems some of our group

slipped away in the dark of night a few months ago. Maybe they will come back

soon for missing us, huh? Maybe God just knew Rick and Ray needed a rest.

Best regards, Want to watch a show.Connie GrannY

[Guest guest]

In a message dated 6/26/2004 12:16:52 AM Eastern Daylight Time,

Grannyof9@... writes:

increased my Humira to 2Xwk

Sorry....I have so many mistakes. As you know...the glaucoma is affecting my

sight and I don't see mistakes as well as I used to. I've increased the Humira

to 1X wk. I don't think they do twice a week yet! Connie

[Guest guest]

Does ReA stand for Rheumatoid Arthritis or Reiters. And what the heck is

Inflammatory Arthritis. Is that part of my Ankylosis Spondylitis? I'm a novice

navigating these twisted paths on tortured limbs. Anne

[Guest guest]

In a message dated 3/18/2005 11:15:45 PM Central Standard Time,

m.henline@... writes:

I have recently been diagnosed with RA. I am determined to try the

Antibiotic Protocol method of treatment. Have any of you tried it

and if so what did you think?

I'd like to hear more about it. My options for treatment have only been

methotrexate plus either enbrel or humira. My doctor has never discussed other

options.

Kirsten, Minnesota

[Guest guest]

>

>

> In a message dated 3/18/2005 11:15:45 PM Central Standard Time,

> m.henline@p... writes:

>

> I have recently been diagnosed with RA. I am determined to try

the

> Antibiotic Protocol method of treatment. Have any of you tried

it

> and if so what did you think?

>

>

>

>

>

> I'd like to hear more about it. My options for treatment have only

been

> methotrexate plus either enbrel or humira. My doctor has never

discussed other

> options.

>

> Kirsten, Minnesota

I just stubbled across it myself, but if you Google it you'll find

plenty of info. Apparently it works quite well for some (not all)

people, but those who it does work for rave about it. My thinking

is " What have I got to lose by trying? " Many doctors do not offer

it because they don't believe in it works, however, there are

doctors out there who do - you just have to look for them.

Antibiotic Protocol is based on the theory started by a doctor about

40 years ago who theorized that RA is actually caused by a type of

bacteria that can be treated with a low, but constant dose of

antibiotics. He had treated over 10,000 patients with this method

and gotten good results with the majority of them apparently. Many

going into remission. I am curious to talk to people who have tried

it to see what they can tell me.

>

>

>

[Guest guest]

Hi:

I have been taking Minocycline for about 5 years now to help with

acne. The irony of this all is the fact that I wasn't diagnosed with RA

until January of this year. Who knows....maybe I would have had

symptoms earlier had I not been taking the Minocycline. I am still

taking it in hopes that it will in some way help improve things. My

doctor used it to treat and " cure " his RA, and he swears by it. He said

it took about 6 full months before he noticed a huge difference. He told

me that his symptoms are minimal and at times he forgets he even has

RA.

I don't know what you pay for it in the US, but here in Canada, it's quite

inexpensive. I have partial coverage through my medical benefits, and

only pay about 5 dollars CDN a month for 200mg a day dose. It's worth

consulting your Rheumy about including it as part of your drug therapy.

Take care...

>

>

> I have recently been diagnosed with RA. I am determined to try the

> Antibiotic Protocol method of treatment. Have any of you tried it

> and if so what did you think?

[Guest guest]

I was wondering if any had success with the antibiotic protocol and knew of any

physicians that practice it in Pennsylvania as I have been unable to locate any.

Thanks for any help.

[Guest guest]

Where are you located in PA? I am near Reading.

*~ Kami ~*

[ ] antibiotic protocol

I was wondering if any had success with the antibiotic protocol and knew of

any physicians that practice it in Pennsylvania as I have been unable to locate

any. Thanks for any help.

.