Re: just my 2 cents worth on AP

[Guest guest]

Cindi....This is exactly how I feel. Even our doctors made the same

comments!!! And it is great to be off all pain meds. This is going to have to

be a

patient driven treatment, it has been my experience that more general

practitioners or family practitioners are willing to give it a try than

rheumatologists. Perhaps they have not worked out those lucrative " percs " for

the expensive

arthritis meds that the rheumys have!!! Martha

[Guest guest]

Cindi,

Thank you for your insightful post.

You wrote, " After all, this is not an 'approved ' treatment for RA... so

again they are covering their butts. "

The big change since you started on the AP in 1996 is that the AP is now an

approved treatment for RA. Minocycline (generic name for brand-name

Minocin) was approved as a DMARD for RA by the American College of

Rheumatology in their 2002 Guidelines. Please see

http://www.rheumatology.org/publications/guidelines/raguidelines02.asp

Sincerely, Harald

At 02:13 AM 5/4/2004 -0400, you wrote:

>Hi all...a lot of talk recently about how long it takes to work. Myself it

>took 9 long months. Was I normal? Did I drink enough water? Did I take

>enough

>supplements? Did I rest enough/not enough? We all will react differently to

>this treatment. Please do not put a time limit on it...it doesn't work

>that way.

>If I had I may have given up. Did I take steps back...absolutely...many.

>Also about the sun. I myself have no problems with the sun....none. Again,

>those are warnings on the label of Mino that 'could' happen...doesn't mean

>they

>will. Read any prescription label and the warnings are numerous...it's

>just to

>cover their butts...just in case 1 person in a 1000 has a problem.

> And my comment about the good ol docs who want nothing to do with the AP.

>They have no guts....are so afraid 1 person in 1000 will have a reaction

>to the

>AP and they will be sued. After all this is not an 'approved ' treatment for

>RA..so again they are covering their butts. I recently saw my 'doc' who would

>not help me with the AP. He asked if I was still doing the AP and what

>drugs I

>was on now. When I explained 'I will be on the AP for life and I take No

>drugs', he seemed shocked and amazed as he watched me walk pain free and said

>'really...no pain meds?' I was very smug...he seemed embarrassed.

>Not to mention the last but not least reason this treatment is not taken

>seriously....the almighty buck....there is no money to be made by anyone

>with this

>treatment...none. The best advice I can give anyone is to research...try

>different things....learn...listen..and take action with your own body.

>Nobody has

>a stake in it as much as you....so find out as much as you can about how to

>treat yourself and then do it. Don't rely on others...you find a way.And

>patience....patience...and more patience. The AP is not a quick fix and

>you're

>done....this is a life thing...work with it. Use all your resources.

>Why should you listen to me? I am (was) one of the RA patients who was told

>the AP would not work because my RA was " severe and long standing " . Just

>another way of saying I had a really bad case of RA and I had it for a

>long time

>(my case 40 years before AP). Too many operations...drugs....problems to even

>consider. trying the AP.....but I did anyway.I started AP in December 1996

>and

>joined this group shortly after. It saved me. Those of you who understand

>what

>I mean KNOW it works....I pray the others will too someday.

>Good Luck and God Bless Cindi/Iowa RA 47 1/2 years AP 7 1/2 years

[Guest guest]

Martha wrote:

> [snip] it has been my experience that more general

> practitioners or family practitioners are willing to give

> it a try than rheumatologists. Perhaps they have not

> worked out those lucrative " percs " for the expensive

> arthritis meds that the rheumys have!!!

They have less legal liability than the board-certified Rheumatologist

treating a rheumatic disease. Less liability gives them more freedom to

explore.

Heirs are much less understanding of patient's decisions than are the

patients and doctors, and extremely prone to litigation if the opportunity

presents. In some places, such as California, they don't even need

opportunity, they litigate on mere theory. Even the cheapest lawsuit will

cost the licensed professional who is a named defendant more than $25,000

USD without setting even one foot in court, without one second of testimony,

without one moment of deposition. $25K just to start the engine. That will

curb most anyone's enthusiasm for the " new, " and the AMA enforces this

against their own as much or more than against people like Hulda .

Geoff

soli Deo gloria

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

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

repairing adrenal damage; 100% volunteer staffed.

(Courtesy: Captain Cook's www.800-800-cruise.com)

[Guest guest]

Hi Jeff...My conclusion's I have reached come from personal experience, so I

guess that does come from my emotions, but that doesn't also mean it can't

come from reality. I also would like to add that I have found a 'few' great

docs

out there...but the majority fall into the 'no guts' catagory from my own

personal experience. I don't know where you are from but here in the midwest

where I live the docs are very conservative and don't try or even offer

alternative treatments...just the same ol same ol....regardless if it's

effective or

not. I guess I was under the impression that doctors should be in it to

help...and not worry so much about their peers. Where are the pioneers? Thank

God for

the few that we have who got into this business for the right reasons. To truly

help and listen. My own experience has taught me the docs didn't want to

listen to me and could not grasp the amount of pain I was in...almost as if they

detached themselves from being compassionate. Maybe that's how they cope. The

great docs I did find and continue to see show compassion and listen to me. But

I feel they are a small group...again my own opinion. 1 last point I would

like to add...again from my own experiences. The docs that I have spoken to are

concerned about being sued. My GP who is highly regarded and respected in our

community refused to help me with the AP because of liability issues .Again

this is just my 2 cents...take care cindi/iowa RA 47yrs AP 7 1/2yrs

I believe that you, like others before you, have overreached and

mischaracterized the motives of doctors. Your conclusion that doctors are

" have no guts " and are " covering their butts " clearly is one reached more on

emotion than reasoned reflection. I have relatives and good friends that

are physicians, so obviously I would have a different perspective, but it

much more reflects reality.

The truth is that the many elements that come into play when a physician

makes a decision on treatment vary widely and lumping them all into one

explanation or conclusion is very simplistic. No doubt some doctors are

professionally weak and overly conservative. Though, they have great

disdain for the insurance industry, their rates are not set on an individual

basis, in the same manner as auto insurance. Getting sued for a doctor does

equate by itself to a rate increase. They are not afraid of being sued -

this is a complete fallacy. They don't enjoy it, but it does not generally

directly impact treatment options. Surgeries and treatments are performed

every day in situations for which the FDA has not granted their approval.

You just do not hear about them. And when this occurs, it is because the

surgeons or doctors believe in the treatment or practice as safe and

effective - they use professional judgement, and their peers support them.

In my conversations, I find the more likely infleunce in the situation you

have described, is peer pressure. The same that exists in any professional

environment. Step out of the mainstream, and you risk losing the respect of

your peers. Some people are so bold and so talented that they can do so

without fear of losing respect. But most people, including doctors, do not

fall into this category. Think about it - if if spent big bucks and many

years developing a professional skill, why would I want to risk losing the

respect of my peers over a treatment that has not yet gained wide acceptance

in the profession. Because some doctors have a certain freedom to do so

does not make the others villians, despite anyones frustrations.

Jeff

[Guest guest]

Cindi,

Sally in Little Rock here-SUPERB POST, WOMAN!!!

Put tears in my eyes-I, too, am doing well on AP and am thrilled-still and

always will be crippled in hands, wrists and feet, but NOT in constant pain

and, today and yesterday, for the 1st time since '93, I'm off Vioxx (tummy

troubles, taking a week off Vioxx to see if that's the trouble) and doing

OK!!! I'm shocked.

Been reading other posts (I only get on here once in a while) and to Patrice

who is on Plaquenil, please, please consider AP-Strange but true story,

group, I met a woman in the DC area who was treated for 3 years by Dr. Brown

(our esteemed leader/saviour), went to another doc who called him a quack,

put her on Plaquenil-she did superbly for many years, GOT HER EYES TESTED

EVERY 3 MONTHS & STILL WENT BLIND!!! Met her in '99 at a water aerobics

class and when I moved in '03 she was legally blind-had not been able to

drive for 3 years. Horrifying story, huh? We've heard a lot on this site.

Stay healthy!

Sally

rheumatic just my 2 cents worth on AP

> Hi all...a lot of talk recently about how long it takes to work. Myself it

> took 9 long months. Was I normal? Did I drink enough water? Did I take

enough

> supplements? Did I rest enough/not enough? We all will react differently

to

> this treatment. Please do not put a time limit on it...it doesn't work

that way.

> If I had I may have given up. Did I take steps back...absolutely...many.

> Also about the sun. I myself have no problems with the sun....none. Again,

> those are warnings on the label of Mino that 'could' happen...doesn't mean

they

> will. Read any prescription label and the warnings are numerous...it's

just to

> cover their butts...just in case 1 person in a 1000 has a problem.

> And my comment about the good ol docs who want nothing to do with the

AP.

> They have no guts....are so afraid 1 person in 1000 will have a reaction

to the

> AP and they will be sued. After all this is not an 'approved ' treatment

for

> RA..so again they are covering their butts. I recently saw my 'doc' who

would

> not help me with the AP. He asked if I was still doing the AP and what

drugs I

> was on now. When I explained 'I will be on the AP for life and I take No

> drugs', he seemed shocked and amazed as he watched me walk pain free and

said

> 'really...no pain meds?' I was very smug...he seemed embarrassed.

> Not to mention the last but not least reason this treatment is not taken

> seriously....the almighty buck....there is no money to be made by anyone

with this

> treatment...none. The best advice I can give anyone is to research...try

> different things....learn...listen..and take action with your own body.

Nobody has

> a stake in it as much as you....so find out as much as you can about how

to

> treat yourself and then do it. Don't rely on others...you find a way.And

> patience....patience...and more patience. The AP is not a quick fix and

you're

> done....this is a life thing...work with it. Use all your resources.

> Why should you listen to me? I am (was) one of the RA patients who was

told

> the AP would not work because my RA was " severe and long standing " . Just

> another way of saying I had a really bad case of RA and I had it for a

long time

> (my case 40 years before AP). Too many operations...drugs....problems to

even

> consider. trying the AP.....but I did anyway.I started AP in December 1996

and

> joined this group shortly after. It saved me. Those of you who understand

what

> I mean KNOW it works....I pray the others will too someday.

> Good Luck and God Bless Cindi/Iowa RA 47 1/2 years AP 7 1/2

years

>

>

>

[Guest guest]

I met a woman in the DC area who was treated for 3 years by Dr.

Brown

> (our esteemed leader/saviour), went to another doc who called him

a quack,

> put her on Plaquenil-she did superbly for many years, GOT HER EYES

TESTED

> EVERY 3 MONTHS & STILL WENT BLIND!!! Met her in '99 at a water

aerobics

> class and when I moved in '03 she was legally blind-had not been

able to

> drive for 3 years. Horrifying story, huh? We've heard a lot on

this site.

>

> Stay healthy!

>

> Sally

While that is truly horrible, it is also true that this is quite

rare. Doesn't make it any less horrible, but it is rare.

In respect to this thread, I think most docs are now on board with

the minocycline treatment, by that I mean that they are aware of it

through reading, even if they don't necessarily use it. But I think

they have the O'Dell theory planted in their minds, not Doc Brown's.

That is to say, to be used in patients recently diagnosed and those

with mild cases - in the hopes that it will quiet down the enzymes

that are attacking the joints. Since they normally haven't used it

and are so familiar with the action of methotrexate, they are

somewhat less inclined to use it - they are like so many of the rest

of us - they do things the way they have always been done. We sort

of resort to old habits, ourselves, don't we?

That said, I certainly agree that those who won't listen, won't even

look at a 1 paragraph article you've bought in, have apparently been

ground down over the years and have lost that zeal they probably

once had when they left medical school - thank you insurance

companies! The only thing I know to do in that case is to move on

to someone else and keep moving on, till you find someone who is

gung ho and wants to really dialog with you. Often that person

turns out to be your family doctor.

Mark

[Guest guest]

Hi Cindi! Geoff here.

You wrote (to Jeff):

> [snip] I guess I was under the impression that doctors should be in it to

> help...and not worry so much about their peers. Where are the pioneers?

If there is any idealism still entering the medical field, it is soon

dispensed with in the courses entitled: Managing Your Medical Practice

Business, et seq. The pioneers are usually dealt with quite harshly by

their trade association (AMA), ala people like Royal Rife, Hulda , and

even Dr. Brown.

In the first century, c33-50 AD, the Apostle paid a visit to a town and

started preaching the gospel. One wouldn't think this too horrid, telling

slaves not to rebel, people to obey the law, married folks to give

themselves completely to one another, etc. Except for one little problem...

as people converted they stopped buying idols made of silver. The

silversmiths got upset. They gathered together and tried to kill

because he was destroying their business.

Royal Rife was in a position to destroy the pharmaceutical industry; Dr.

Brown's therapy attacked the rheumatic hegemony; Hulda is expanding on

Rife's work. The pioneers are vilified, attacked, and murdered, today just

as they were in the first century.

For more on what happened to , read, " The Acts of the Apostles, "

commonly called " Acts " in the New Testament.

Geoff

soli Deo gloria

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

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

repairing adrenal damage; 100% volunteer staffed.

(Courtesy: Captain Cook's www.800-800-cruise.com)

[Guest guest]

Hi Jeff! Geoff here.

You wrote:

> I believe that you, like others before you, have

> overreached and mischaracterized the motives

> of doctors. [snip]

> The truth is that the many elements that come

> into play when a physician makes a decision on

> treatment vary widely and lumping them all into one

> explanation or conclusion is very simplistic. [snip]

> Surgeries and treatments are performed every day

> in situations for which the FDA has not granted their

> approval. [snip]

> they use professional judgement, and their peers

> support them.

>

> In my conversations, I find the more likely infleunce

> in the situation you have described, is peer pressure.

> The same that exists in any professional environment.

> Step out of the mainstream, and you risk losing the

> respect of your peers. [snip]

> Because some doctors have a certain freedom to do so

> does not make the others villians, despite anyones frustrations.

Generally well-stated except that, IMO, you under-state the impact of the

peer group's direct influence on any individual physician's practice. That

peer group is the same group who will testify against the physician.

Many physician's are bold until they are sued the first time, personally.

Endless conferences with seemingly mindless attorneys telling them they can

lose their practice, their home, their savings, their future for them and

their children -- all is at risk because a long-lost cousin of a now

deceased patient has decided he either did not like the treatment, or has

eyes for the brass ring, and thus sued the physician for wrongful death.

This makes the physician decidedly more circumspect; if not their license

sways in the balance, and even prison is not " off the table. "

I too have many family and friends in health care, physicians, researchers,

nurses, etc. I matriculated with many at the UC as our fields required

identical undergrad studies. I grew up with many. One of my favorite

sayings is that people who can't hack the hard sciences go into law.

What I have witnessed is that outside my own blood family, even my closest

friends whom I knew from as long ago as kindergarten feel compelled to

recite and record the recitation of the AMA doctrine for any and every act

they take or refuse. This is not " insurance-caused " (directly) but " forced

by litigation. " Obviously they are all inter-related, however the point

remains: When a physician is faced with losing his all to some upset

relative he's never heard of due to the acts of a scoundrel before the bar,

his modus operandi changes -- forever. Those patients who come

after-the-fact find a far different doctor treating them, one that has been

cowed by force and fact and now is very selective about when courage should

be invoked and when it is better to pass any particular fight.

Today's physician is far better off, liability-wise, putting his/her

idealism into such enterprises as Doctors Abroad in Africa than trying to do

so at home in any but the most conservative of places, IMO and my

experience.

Geoff

soli Deo gloria

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

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

repairing adrenal damage; 100% volunteer staffed.

(Courtesy: Captain Cook's www.800-800-cruise.com)