Re: Mainstream RDS and Antibiotics

August 3, 2001

Ronnie,

I know that you have had what you consider a bad experience using

antibiotics. But I really take offense to the tone of your post and to your

labeling those of us who chose to follow the antibiotic treatment as

cultists. If it didn't work for you, fine. The fact is I haven't heard of a

single person going on permanent remission using DMARDs. That doesn't mean

there aren't any, but I have yet to hear one cry of glee from ONE person

here because they've been cured.

That is not the case on the rheumatic mailing list. I hear constant

testimony after testimony about cure...yes, cure! The other thing you forget

to point out is that antibiotics are safer on our bodies than the DMARDs. My

doctor was very happy I chose antibiotics because she says that the DMARDs

end up causing a host of additional problems in most of the people she sees

including liver and kidney problems. And she is a very respected physician,

as was Dr. Brown, the creator of AP.

I've been very supportive of your choice to find other avenues to wellness.

I'd hope that you'd give me the same respect. This is, after all, a support

group for goodness sake!

deano

> From: " Ronnie " <ronevans@...>

> Reply-

> Date: Thu, 2 Aug 2001 22:11:07 -0700

> < >

> Subject: [ ] Mainstream RDS and Antibiotics

>

> Hi All.......There is another point that should be made concerning the use of

> antibiotics to treat PA or other auto-immune diseases. Any reputable RD will

> tell you that taking tetracycline family drugs, especially minocine, may help

> you. The treatment has been around a long time. It just isn't statistically

> effective. These drugs are unique in having secondary effects such as strong

> dmard and anti-inflammatory effects. Also a lot of people are allergic to

> these drugs in some degree. The practice is called off labeling. That is

> when a drug is prescribed for treatment it was not specifically approved for.

> Doctors do it all of the time. ly, in the mainstream view, these

> antibiotics are being used and working like MTX and an anti inflammatory drug

> combined but with a different but weaker and less predictable mechanism of

> action. All of the microbial theory stuff is probably fantasy for the most

> part. (Yes I know about the Lyme Disease and Leaky Gut connection. S!

> o what? Not verifiable.) Also the famed Herxheimer reaction is probably just

> an allergic reaction. That's why the Benadryl (an antihistamine) works. I'm

> not saying don't try antibiotics. I did for 10 months. I'm sure the AP is

> very effective for some people. Just not the numbers and effectiveness the

> proponents claim and not for every disease. And certainly not without risks

> and side effects. Don't buy into the AP cult. Use a realistic an open mind.

> Ask lots of questions to both sides. Educate yourself. And one final note.

> The AP Drs I dealt with for second opinions were very expensive (a factor of

> 10 over my own RD) and ran thousands of dollars in questionable test and

> x-rays. The money didn't bother me as much as the cumulative x-ray exposure.

> RGDS Ronnie E.l

August 3, 2001

> Hi All.......There is another point that should be made concerning

the use of antibiotics to treat PA or other auto-immune diseases.

Any reputable RD will tell you that taking tetracycline family drugs,

especially minocine, may help you. The treatment has been around a

long time. It just isn't statistically effective.

Hi Ronnie- I would like to comment on your message if I may. From

whom did you get the information that antibiotic therapy isn't

" statistically effective " - there have been six studies so far

published in the top research journals, and all of them show clear

statistical effectiveness. (you can read about them at roadback or

rheumatic.org) Most rheumatologists do put this down, I think

because the infectious theory is not accepted. But the results speak

for themselves.

>These drugs are unique in having secondary effects such as strong

dmard and anti-inflammatory effects.

Yes, this is true, and is the subject of exciting research now.

There

is a company called Collagenex Pharmaceuticals (a good stock to buy,

I

think!) which is developing a family of compounds derived from the

tetracyclines that lack the antibiotic effect, but enhance the other

effects, especially the effect of inhibiting breakdown of connective

tissue. Regular doxycycline and minocycline do already have a strong

effect this way- doxycycline is the subject of an NIH study right now

for osteoarthritis, based not on its antibiotic effect, but rather

this inhibition of the enzymes that destroy cartilage and bone. So

this is indeed a very important reason why these drugs tend to be

effective at stoppping the damage from these diseases. I have

mentioned this before in my posts, and I should have remembered to

repeat it the other day when responding to someone who was asking

about halting progression while starting the AP.

>Also a lot of people are allergic to these drugs in some degree.

This is interesting. I don't know what the number might be. Since

these drugs have been used for millions of patient-years for acne,

there must be very good data on this. I'll try to find out. My

impression from reading the basic published data is that allergy is

fairly rare.

>ly, in the mainstream view, these antibiotics are being used

and working like MTX and an anti inflammatory drug combined but with

a different but weaker and less predictable mechanism of action. All

of the microbial theory stuff is probably fantasy for the most part.

(Yes I know about the Lyme Disease and Leaky Gut connection. So

what? Not verifiable.) Also the famed Herxheimer reaction is

probably just an allergic reaction. That's why the Benadryl (an

antihistamine) works.

Yes, this certainly is the mainstream view, in fact, I would say this

is a mild way of stating their skepticism- " quackery " is a word I've

heard! The Herxheimer reaction is exactly a type of allergic, or as

immunologists call it, sensitivity reaction. The question is, to

what? This is one of the many complicating factors in understanding

the action of these drugs- is the reaction to the drug, or something

the drug is killing? This is not yet known. The immune system is so

complex- I've been reading an immunology textbook lately, for

fun (!?). I'm a physicist, not a physician, and I work on very

complex systems where all parts interact with all other parts- and

it's clear that the immune system makes what I do look like child's

play! It's no wonder they haven't yet figured out what causes PA. At

this point, it's probably better to forget the theorizing, unless you

find it interesting, and concentrate on good scientific studies of

results, OVER THE LONG TERM!!

>I'm not saying don't try antibiotics. I did for 10 months. I'm

sure the AP is very effective for some people. Just not the numbers

and effectiveness the proponents claim and not for every disease.

And certainly not without risks and side effects. Don't buy into the

AP cult. Use a realistic an open mind. Ask lots of questions to both

sides. Educate yourself.

You're absolutely right. What I have been trying in my clumsy way

here in this board is to provide information to help people educate

themselves. No treatment is without risks. I believe we all should

take responsibility ourselves for making the decision about risks-

don't let the doctor sweet-talk you into something without getting

them to really tell you: what the scientific data are on safety and

effectiveness over the long term, what the specific risks and side

effects are, and how the alternatives compare . Any doctor who won't

discuss these things seriously when dealing with a long-term chronic

disease is not worthy of his or her profession. And any doctor who is

ignorant of modern research results is dangerous. I agree with

strongly- go to a teaching hospital if you can possibly do

so.

>And one final note. The AP Drs I dealt with for second opinions

were very expensive (a factor of 10 over my own RD) and ran thousands

of dollars in questionable test and x-rays. The money didn't bother

me as much as the cumulative x-ray exposure. RGDS Ronnie E.l

Wow- I think we aren't supposed to talk about specific doctors names

here- but would you email me and tell me? The roadback people have a

list of doctors who do the AP, and I would like to find out if these

doctors are on it. My family doctor is giving me the AP. I had no

special tests or xrays, except recently I went to a five-year check

at

the orthopedist, and got knee xrays. My doxycycline costs $7 every

two months. I guess there are people out to rip you off in every

profession!

I am as interested in failures of AP as much as successes. Ronnie,

could you tell me which antibiotic and what dose you were on for 10

months, I'd be much obliged. Best regards, and hoping your enbrel

works out as well as it is starting! -- Greenly

August 3, 2001

In a message dated 08/03/2001 2:16:09 PM Eastern Daylight Time,

deanzo@... writes:

<< I really take offense to the tone of your post and to your

labeling those of us who chose to follow the antibiotic treatment as

cultists. If it didn't work for you, fine. >>

Deano - While I didn't really " read " the same tone into that post that you

did, I would like to say on the subject that I have found in this and another

support group that what works for one person sometimes doesn't work for

others - we are all different. And I'm not putting anyone down here, so

please don't read it that way - but let's all try to support each other no

matter what course of treatment (or non-treatment) we take. Don't take

anyone's hope away. Sometimes that's all they've got.

I hope each of you finds the treatment that's right for you and that it works!

Take care,

August 4, 2001

Testimonials, especially on the internet are less than useless. The Shammel

book was 90% testimonials also. Try to verify some of these claims sometime. I

amazes me how you guys jump at one word out of a whole post. All I am saying is

look at both sides and don't be overwhelmed by the hyperbole. RE

[ ] Mainstream RDS and Antibiotics

>

> Hi All.......There is another point that should be made concerning the use

of

> antibiotics to treat PA or other auto-immune diseases. Any reputable RD

will

> tell you that taking tetracycline family drugs, especially minocine, may

help

> you. The treatment has been around a long time. It just isn't

statistically

> effective. These drugs are unique in having secondary effects such as

strong

> dmard and anti-inflammatory effects. Also a lot of people are allergic to

> these drugs in some degree. The practice is called off labeling. That is

> when a drug is prescribed for treatment it was not specifically approved

for.

> Doctors do it all of the time. ly, in the mainstream view, these

> antibiotics are being used and working like MTX and an anti inflammatory

drug

> combined but with a different but weaker and less predictable mechanism of

> action. All of the microbial theory stuff is probably fantasy for the most

> part. (Yes I know about the Lyme Disease and Leaky Gut connection. S!

> o what? Not verifiable.) Also the famed Herxheimer reaction is probably

just