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,

Thanks for sharing your story. It definitely sounds like an interesting

approach to treating this disease. My question concerns the warnings that

the news media are sounding now about the overuse of antibiotics. They seem

to be saying that overuse leads to the eventual ineffectiveness of the

antibiotic, meaning that when you need an antibiotic to treat an infection,

etc. it won't work, or won't work as well. Have you run into any problems

with this?

Thanks for the information!

Sinead

>From: jbgreenly@...

>Reply-

>

>Subject: [ ] AP- antibiotic therapy

>Date: Wed, 28 Mar 2001 22:09:53 -0000

>

>Hi Geri-

>

>I have been taking doxycycline for nearly two years now. Since last

>last fall I have cut back from 2x 100mg monday, weds and fri, to

>100mg mon, weds fri. In other words, to half my original dose. I'm

>continuing to feel great. I don't know whether I will eventually

>stop entirely or not. I did try stopping for a month last December,

>just to see what would happen- and nothing happened, I did not have a

>flare at all. This is very different from when I stopped taking the

>various NSAIDS, I always had bad flares and ended up worse than

>before. I started the doxycycline again after Christmas because one

>ankle still has a little remaining inflammation, and I want to see if

>it can get totally well.

>

>As with this disease in general, it seems that people's experiences

>vary widely. When people begin the AP (antibiotic protocol) early in

>the disease, like in the first year, it seems to be possible to

>really eradicate it, and then stop taking the antibiotic. O'Dell's

>studies of early rheumatoid arthritis have shown great results over

>four years now, with about half of the people being able to get off

>all drugs. It seems that most people who, like me, have

>long-standing

>disease when we start the AP will probably want to continue it

>indefinitely to avoid recurrence, or at least be ready to start again

>immediately if it begins to come back. Either the organisms are so

>deeply entrenched that the antibiotic can't completely eradicate

>them,

>or it may turn out that they are common, we easily get reinfected,

>and

>our immune systems are now sensitized to them. I don't think anybody

>knows. A complicating factor is that the tetracyclines (doxycycline

>and minocycline are most often used) also do have quite strong anti-

>inflammatory effects which are independent of their antibiotic

>properties. They inhibit the production of the enzymes called

>metalloproteinases that break down cartilage. It's not clear to me

>that anybody knows exactly how all this goes together in their

>effectiveness against arthritis. I do know that my knees, which had a

>lot of cartilage damage, feel amazingly strong now. I am a

>scientist, and I am frustrated that the money for research to answer

>these questions hasn't been found. Part of the problem is that these

>are cheap, generic drugs, and there is not big money to be made by

>some drug company in researching this. But- the point is, it works!

>

>What is definitely very clear is that this is a safe treatment for

>the long term, and that it is cheap enough to afford. There are

>people who have been on the AP for 20 years and more, and since these

>antibiotics are routinely prescribed for years for acne, there are

>many millions of patient-years of experience with them. Generic

>doxycycline costs me $7 every other month- that's my total drug bill

>(it's not only safer than aspirin, it's cheaper, too!)

>

>I very highly recommend that you check out the information at the

>roadback.org site, and the book by Henry Scammell, which is how I

>found out about this, and really answered my questions very well. I'm

>sure that the AP won't help everybody as much as it has me, and it is

>not described as a cure, but it is a VERY safe treatment compared

>with any of the other options, it is cheap, and it has worked

>extremely well for many people. I hope this helps you- ask again if

>you have other questions. Very best wishes --

>

>

>

_________________________________________________________________

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> ,

>

> Thanks for sharing your story. It definitely sounds like an

interesting approach to treating this disease. My question concerns

the warnings that the news media are sounding now about the overuse

of antibiotics. They seem to be saying that overuse leads to the

eventual ineffectiveness of the antibiotic, meaning that when you

need an antibiotic to treat an infection, etc. it won't work, or

won't work as well. Have you run into any problems with this?

Thanks for the information!

> Sinead

Hi Sinead-

You ask a very important question. I was worried about this too.

Overuse and misuse of antibiotics (like giving them for colds and

other viruses they don't even work on!) is a huge problem, and that

includes gross misuse in animal feed as well. The problem is that

bacteria can evolve resistance to a particular antibiotic over time,

so it becomes ineffective against them. (Notice it's the germs, not

the person, that develop resistance!)

Most antibiotics work by being engineered to attack some particular

protein on the surface of the bacterial cell wall. Unfortunately,

these surface proteins mutate and evolve very easily and rapidly. (By

the way, this is an absolutely clear case of evolution in action- and

fast!). The antibiotics used in the AP (antibiotic protocol) for

arthritis, doxycycline and minocycline, are derivatives of

tetracycline, which is a natural antibiotic evolved by certain

organisms that live in soil, to compete with other bacteria. These

tetracyclines were discovered, and have been used in medicine since

the 1940's, so it's one of the oldest types of antibiotic. There has

not been a problem with developing resistance to them. Why? I'm not

an expert, but tetracyclines work in a very different way, by

interfering with a fundamental process of protein synthesis inside

the bacterial cell, and it is said that it is very unlikely that

resistance could develop. I guess it's another case of nature being

smarter than humans- those germs that evolved tetracycline had

millions of years to do it, fighting other bacteria all the way, and

came up with a better weapon than human scientists have so far. So

these drugs don't work on all bacteria, but the ones they do work on

aren't likely to find a way to beat them anytime soon.

I came across a fascinating piece of evidence recently. It seems that

archaeologists investigating the ancient civilization of Nubia in

Africa detected tetracycline in the bones of mummies. These people

apparently ingested tetracyclines all their lives, likely because

their primitive beer was made from grain contaminated by those

tetracycline-producing soil bugs! Bones can be analyzed for all

sorts of illnesses, and it was found that these people had very

healthy joints, great teeth and gums, and no evidence of increasing

resistant infections showing up over about a 500 year period.

In any case, my doctor, who is very conservative about antibiotic use,

told me that there are (at least at the present!) alternative

antibiotics to tetracyclines for all the infections they are used

against, and he was very willing to let me take doxycycline

indefinitely. One of the main uses of tetracyclines today is against

acne, for which people often take them for years. By that standard,

arthritis (as we know all too well) is a very serious disease, and

this is not a frivolous use of antibiotics. In any case, I've had no

problems, and I haven't heard of any from anyone else, including

people who have been doing this for 20 years or more.

Hope this helps- best wishes,

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Dear

Your emails on antibiotic therapy have been absolutely fascinating! I have a

question about your treatment regime, which has been on my mind since I

originally read the material available at the Road Home website. Extended

use of antibiotics such as tetracyclines is sometimes associated with

chronic candida overgrowth in the large intestine, because of the disruption

caused to the intestinal flora. The medical profession is only beginning to

accept that this can give rise to very serious health problems. Has your

doctor raised this subject, perhaps by suggesting the use of anti-fungals

and probiotic cultures during the antibiotic therapy? Have you heard of

people who follow this treatment programme having intestinal problems or

allergies?

Thanks in advance,

jonpr@...

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A side note about the yeast problems with us - diabetics be careful what you use

if you get a yeast infection. Diflucan, the one dose pill, which will knock the

heck out of your yeast infection has a bad interaction with glucophage.

FWIW,

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Good questions . I looked up some sites to get come more

info and these are some of the things that I found on side effects.

Minerals have some effects on it's effect.

Take at a Different Time of Day Numerous minerals, including

aluminum (found in many antacids), bismuth (in Pepto-Bismol), calcium,

iron, magnesium, and zinc, interfere with the absorption of

medications in the tetracycline family (and vice versa).1–4

The reason is the minerals and the drugs attach to each other and

form insoluble chemicals that simply pass out of the digestive tract.

The best solution is to avoid taking supplements that contain these

minerals within the 2 hours before or after your dose of tetracycline

medication.

Tetracyclines may cause your skin to be more sensitive to sunlight

than it is normally. Exposure to sunlight, even for brief periods of

time, may cause a skin rash, itching, redness or other discoloration

of the skin, or a severe sunburn. When you begin taking this

medicine:

Side Effects

For all tetracyclines

More common:

Increased sensitivity of skin to sunlight (rare with minocycline)

Rare:

Abdominal pain; bulging fontanel (soft spot on head) of nfants;

headache; loss of appetite; nausea and vomiting; visual changes;

yellowing skin

For demeclocycline only

Less common

Greatly increased frequency of urination or amount of urine; ncreased

thirst; unusual tiredness or weakness

For minocycline only

Less common

Pigmentation (darker color or discoloration) of skin and mucous

membranes

Other side effects may occur that usually do not need medical

attention. These side effects may go away during treatment as your

body adjusts to the medicine. However, check with your doctor if any

of the following side effects continue or are bothersome:

For all tetracyclines

More common

Cramps or burning of the stomach; diarrhea

Less common

Itching of the rectal or genital (sex organ) areas; sore mouth or

tongue

For minocycline only

More common

Dizziness, light-headedness, or unsteadiness

In some patients tetracyclines may cause the tongue to become

darkened or discolored. This effect is only temporary and will go

away when you stop taking this medicine.

Other side effects not listed above may also occur in some patients.

If you notice any other effects, check with your doctor.

Address of the following information is has follows:

http://www.nlm.nih.gov/medlineplus/druginfo/tetracyclinessystemic20255

2.html

, have you had any of these side effects? If so how have you

been dealing with them? If not have you had any other side effects?

Is you diet, or timing of taking your medicaton special in anyway?

Thanks,

Roy :{)

Dear

Your emails on antibiotic therapy have been absolutely fascinating! I

have a question about your treatment regime, which has been on my

mind since I originally read the material available at the Road Home

website. Extended use of antibiotics such as tetracyclines is

sometimes associated with chronic candida overgrowth in the large

intestine, because of the disruption caused to the intestinal flora.

The medical profession is only beginning to accept that this can give

rise to very serious health problems. Has your doctor raised this

subject, perhaps by suggesting the use of anti-fungals and probiotic

cultures during the antibiotic therapy? Have you heard of people who

follow this treatment programme having intestinal problems or

allergies?

Thanks in advance,

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> Dear

>

> Your emails on antibiotic therapy have been absolutely fascinating!

I have a question about your treatment regime, which has been on my

mind since I originally read the material available at the Road Home

website. Extended use of antibiotics such as tetracyclines is

sometimes associated with chronic candida overgrowth in the large

intestine, because of the disruption caused to the intestinal flora.

The medical profession is only beginning to accept that this can give

rise to very serious health problems. Has your doctor raised this

subject, perhaps by suggesting the use of anti-fungals and probiotic

cultures during the antibiotic therapy? Have you heard of people who

follow this treatment programme having intestinal problems or

allergies?

>

> Thanks in advance,

>

> jonpr@e...

Hi - Good question- I was worried about this too. It sounds

like you are well aware of the huge volume of info on the Web on the

bad things candida (yeast infection) can do. The antibiotic protocol

I am on deals with this danger in several ways. First, I take the

antibiotic only three days a week, (100 mg MWF) to give the gut flora

a chance to stay normal. The tetracycline antibiotics happen to

concentrate in the joints and stay there in between doses, and this

low dose seems to be adequate to control the bad organisms there. The

other thing that I do is eat some good (live culture) yogurt every

day. Dr Brown who pioneered this therapy and treated around 10,000

patients over 40 years used this low-dose regime, and said that yogurt

was all that was needed to avoid yeast problems. However, some doctors

are now using the full standard antibiotic dose of 200 mg every day,

especially in the case of really lethal disease like scleroderma,

which the AP is also being used on with wonderful success. Many

people now take acidophilus or probiotic supplements to do the same

thing- replenish the good gut bacteria that will be reduced by the

antibiotic.

Another thing people commonly do is reduce sugar and processed starch,

ie white flour in their diet, which yeasts thrive on in the digestive

tract. I started doing this myself years ago anyway, long before I

started the AP, because I found my arthritis improved some with a low-

starch and sugar diet. Finally, some natural antifungals, like

garlic, and grapefruit seed extract, are used by some people who have

had chronic yeast problems even before starting the AP. I love

garlic, so this is no change for me either. By the way, I suspect that

quite a lot of arthritis patients do have yeast problems, because many

of the standard immune-supressing drugs, as well as NSAIDS, can also

disrupt the digestive tract and cause this problem. This issue

certainly is a concern to me over the long term with the AP, and so I

am trying to use the minimum possible antibiotic dose as time goes on.

So far I don't seem to have had any problems, and I don't know of

anyone who has had to give up on the AP because of this. Best wishes

--

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I used tetracyline (?) long-term in my teenage years to control acne

and have been rewarded with chronic vaginal yeast infections. I

take garlic and acidophilis as dietary supplements as well as

eating plenty of my own organically grown garlic and some yogurt.

My yeast infection has been out of control the last two months. I

have tried OTC and prescription medicines as well as being

" painted " with betadyne. I didn't know NSAIDs could aggravate it.

My current flare corresponds to the amount of time I have been

taking the NSAID. I sure wish I could just have one disease at a

time. It would be so much easier!

in KS

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> Good questions . I looked up some sites to get come more

> info and these are some of the things that I found on side effects.

(I repeated this info at the bottom of this page --)

> , have you had any of these side effects? If so how have you

> been dealing with them? If not have you had any other side effects?

> Is you diet, or timing of taking your medicaton special in anyway?

>

> Thanks,

> Roy :{)

Hi Roy-

Let me try to tell you what I know. First of all, as for me, the

only

side effect of doxycycline I have found is that it gives me a stomach

ache if I take it with only water. So I always take it with some

food- even one piece of bread, or an apple for instance, is enough to

get rid of that problem. The directions that come with it from the

pharmacy say to take with food, but avoid mineral supplements-

calcium and iron- at the same time, as your info says, so I do that.

I just take cheap generic doxy, and there are fancy kinds that are

time-release that are supposed to be easier on the stomach. Also

minocycline is apparently easier on the stomach. I take the

doxycycline 100 mg monday, weds and fri. (This is much lower than

the standard antibiotic dose for diseases- 200 mg daily). My diet

is,

I hope, healthy. The only special thing I do is eat yogurt every day,

and restrict sugar and refined starch- white flour, as much as

possible. I wrote another message today that explains why- to guard

against yeast problems.

Doxycycline and minocycline are the drugs most people are using in

the antibiotic protocol (AP). They are modern derivatives of plain

tetracycline that interact much more weakly with minerals and

vitamins, so you can take them with food. I'm still confused about

this, though, because some of the doctors that do AP apparently

insist that they be taken with water only for maximum effect. I

don't

understand why, and I have done wonderfully taking mine with food.

The technical data I have found indicate that though tetracycline may

be only around 50% absorbed with food, doxy and mino are 90-100%

absorbed, and are even OK with milk. So, this is a puzzle to me. I

know of no scientific study comparing with vs without food.

Dizziness is definitely reported as a side effect of minocycline by

some people. It apparently often goes away after a week or two, but

some people can't take it. I started on doxycycline bacause I was

having dizzy spells anyway when my arthritis was very bad, and my

doctor suggested we avoid minocycline because of that.

Sun sensitivity is supposed to happen- I think that means you sunburn

more easily. But I haven't noticed any difference myself, and I don't

recollect others talking about it. I think some people use sunscreen

or wear hats when they are out a long time to be safe. I go to the

coast of Maine every year on vacation and am out in the sun all day,

and haven't noticed that I burn any easier than before, but I imagine

it probably would be different for some people. Minocycline is

supposed to be much less of a problem this way, and might be the

choice for people who tend to be sun-sensitive.

I don't know about the pigmentation effects- I've seen that

information too, but I haven't heard of people having those problems.

One effect that many people notice is that when you start the

antibiotic protocol, you may feel worse at first. This happened to

me- the second day, I felt horrible, and couldn't get out of bed for

three days. Luckily I had read the book and knew that this can

result when the antibiotic begins killing the germs- the toxic

remains

of the dead organisms can really stir up the immune system, causing

what is known as a Jarisch-Herxheimer reaction ( " Herx " for short)

which wasnoticed by those guys when antibiotics were first being used

for some other disease. So, though definitely not nice at the time,

this is actually a good sign- it means the drug is working. It is

usually recommended to start with a really low dose and work up, to

help minimize this possibility, and also with minocycline to minimize

the possibility of initial dizziness. I was impatient and started

right off with 2 x 100 mg, MWF. I've cut that back now by half, just

because I don't see any sense in taking any more than necessary, and

so far I haven't slid back at all. The way people respond varies

greatly, but most likely, as for me, this is expected to be a slow

process, definitely not an overnight miracle. It took around six

months before I was really clearly getting much better, with lots of

ups and downs all along the way. That's why the foundation took the

name " Road Back " - it's like a (bumpy!) road to travel on back to

health, not a magic bullet, and it takes real patience. But, I think

very many of you realize that this is a lifetime fight you are in,

and

to me, after 28 years with psoriatic arthritis, it's absolutely clear

that the long-term view is the only one that makes any sense at all.

That's why safety and lack of side effects are absolute top priority

for me.

Best wishes --

Here's the rest of the list of side effects and instructions for

tetracyclines Roy found:

> Minerals have some effects on it's effect.

> Take at a Different Time of Day Numerous minerals, including

> aluminum (found in many antacids), bismuth (in Pepto-Bismol),

calcium,

> iron, magnesium, and zinc, interfere with the absorption of

> medications in the tetracycline family (and vice versa).1–4

>

> The reason is the minerals and the drugs attach to each other and

> form insoluble chemicals that simply pass out of the digestive

tract.

> The best solution is to avoid taking supplements that contain these

> minerals within the 2 hours before or after your dose of

tetracycline

> medication.

>

> Tetracyclines may cause your skin to be more sensitive to sunlight

> than it is normally. Exposure to sunlight, even for brief periods

of

> time, may cause a skin rash, itching, redness or other

discoloration

> of the skin, or a severe sunburn. When you begin taking this

> medicine:

>

> Side Effects

> For all tetracyclines

> More common:

> Increased sensitivity of skin to sunlight (rare with minocycline)

> Rare:

> Abdominal pain; bulging fontanel (soft spot on head) of nfants;

> headache; loss of appetite; nausea and vomiting; visual changes;

> yellowing skin

>

> For demeclocycline only

> Less common

> Greatly increased frequency of urination or amount of urine;

ncreased

> thirst; unusual tiredness or weakness

>

> For minocycline only

> Less common

> Pigmentation (darker color or discoloration) of skin and mucous

> membranes

>

> Other side effects may occur that usually do not need medical

> attention. These side effects may go away during treatment as your

> body adjusts to the medicine. However, check with your doctor if

any

> of the following side effects continue or are bothersome:

>

> For all tetracyclines

> More common

> Cramps or burning of the stomach; diarrhea

> Less common

> Itching of the rectal or genital (sex organ) areas; sore mouth or

> tongue

>

> For minocycline only

> More common

> Dizziness, light-headedness, or unsteadiness

>

> In some patients tetracyclines may cause the tongue to become

> darkened or discolored. This effect is only temporary and will go

> away when you stop taking this medicine.

>

> Other side effects not listed above may also occur in some

patients.

> If you notice any other effects, check with your doctor.

>

> Address of the following information is has follows:

> http://www.nlm.nih.gov/medlineplus/druginfo/tetr

acyclinessystemic20255

> 2.html

>

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> I used tetracyline (?) long-term in my teenage years to control

acne

> and have been rewarded with chronic vaginal yeast infections. I

> take garlic and acidophilis as dietary supplements as well as

> eating plenty of my own organically grown garlic and some yogurt.

> My yeast infection has been out of control the last two months. I

> have tried OTC and prescription medicines as well as being

> " painted " with betadyne. I didn't know NSAIDs could aggravate it.

> My current flare corresponds to the amount of time I have been

> taking the NSAID. I sure wish I could just have one disease at a

> time. It would be so much easier!

> in KS

Hi -

I know what you mean- why do these things have to be so complicated?

I'm sure you know that there is strong evidence that most chronic

vaginal yeast infections are associated with intestinal or systemic

yeast problems too, so you have to attack all of that to beat it. I

know only a little about the NSAID business. A really dirty secret of

all those wonderful anti-inflammatory drugs called NSAIDS that all

the

ads are pushing at us is the true extent of damage they do to the

lining of the digestive tract. The latest figure I have is that

there

are about 100,000 hospitalizations a year and 16,000 deaths in the US

due to NSAID- caused ulceration of the intestines. That's the part

that many people are aware of. But many aren't aware that even when

(as for most of us, luckily) they don't cause disasterous events like

that, they do cause increased intestinal permeability, making it

easier for things like food allergens, bacteria and yeasts to invade

the body through the intestinal wall. The whole " leaky gut syndrome "

thing seems to be somewhat disreputable in the medical mainstream,

but

is gaining more and more attention as to its role in chronic illness.

There's no doubt that our modern high-sugar, low fiber diet makes us

prone to gut troubles anyway, and NSAIDS certainly don't help. The

claim to fame of the new COX-2 inhibitors, Celebrex and Vioxx, is

that

they don't have such a bad effect on the gut, but they are very new,

and already some other worrisome things are showing up about them.

It

is complicated! Just a thought- have you tried grapefruit seed

extract? I have read great things about its effectiveness and safety

for intestinal yeast- no personal experience, though. Oh, and I

wonder- do you remember what dose of tetracycline you were on- every

day? And, did they give you anything to help avoid yeast- yogurt or

acidophilus or anything, while you were on the tetra?

Best wishes --

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