RE: I'm new - hello

[Guest guest]

Hi ! Congratulations for standing up for yourself! If these doc's could

feel what we go thru for just one day, they would be more open to change. Have

you found an A/P doc that will start you on Minocin? If not, go to

Roadback.org. Read the rules and hit the " I agree " part and then go to the

Bulletin Board. Ask for Richie. He has a roster of A/P docs across the country

and maybe even the far reaches of the world. We are not allowed to mention docs

by name on that site as no advertisement is allowed. But if you put in your

e-mail address in the top of your post, he will answer you personally. Good

luck and keep us up to date. Dolores

sammiches42 <sammiches42@...> wrote: I just joined this group and thought

I'd say hi. Something happened

yesterday that has motivated me to become more active in researching AP...

I've had psoriatic arthritis for about 10 years. A few years back, my

rheumatologist tried to put me on methotrexate. I took it for a

couple weeks, but it was making me feel sick, and after researching it

a bit online I decided that it wasn't something I wanted to be putting

in my body after all. Unhappy with the other options my doctor had

suggested (Enbrel and the others), I decided to try controlling my

disease with diet and lifestyle. After two years of very limited

success with that, I stumbled upon The New Arthritis Breakthrough and

quickly read it cover to cover.

At this point, I made an appointment with the same rheumatologist in

order to see how he felt about AP. I was pretty skeptical, since he'd

neglected to suggest it as an option the last time, but I figured I'd

give him a chance. He took a look at my hands and expressed

irritation that I'd let my condition go on without taking methotrexate

or Enbrel for so long. I explained that I wasn't very happy with

those options, and asked him if there was anything else I could try.

At this point he began to show a bit of agitation and defensiveness,

which quickly peaked when I asked if he was familiar with AP. He

mentioned Dr. Brown's name, stated, " but they never found any bug " ,

and told me not to " F--- around. You want to be able to use your

hands. Take something everybody knows works! "

I asked him if he'd tried AP with any of his patients, and he said he

had but was very unimpressed. I asked if he'd tried it long term,

since it can take 6 months or more for it to start working, but he was

done talking to me at this point. He basically brushed me off and

said to call him if I wanted to start the Enbrel. At no point in the

conversation was I rude or disrespectful of him, but I found his

unwillingness to consider what I had to say very disrespectful toward

me. He was even defending himself from accusations I had not made,

saying " I get the same amount of money whether I give you Enbrel or

tetracycline, " but at no time had I suggested his position was

financially motivated.

This was a very strange experience for me. The descriptions found in

the New Arthritis Breakthrough of how most doctors react to

suggestions of trying AP turned out to be so accurate, it was scary.

Anyhow, such an unreasonable reaction from my doctor

combined/contrasted with the positive testimonials of so many folks

who've had their quality of life improve on this treatment convinced

me that it's something worth exploring. I look forward to discussing

and learning more about it here.

Sincerely,

Carbone

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

.... Talk to a Gen practitioner about the Minocin. They do not seem to

have the resistance to antibiotic protocol that the rheumatologists do. Take

the book along as a gift. Explain your position about the heavier meds and

that you simply want guidance and help in trying this less toxic method first.

I have never been refused a prescription for Minocin when using this

approach. Martha

[Guest guest]

Just to add onto what's been said, the two doctors I have are most

supportive, I believe, because of what they personally have been through.

One's wife was deathly ill with Lupus and RA, the other's teen-aged daughter

almost died from Lyme's. It seems that when illness hits close to home,

many of these trained professionals, when the established textbook solution

fails, are forced to open up closed minds and embrace whatever they can

find. When the alternate protocols work ... they have a chance to become

our allies and continue to explore alternatives since their basic belief

system has been awakened. They then often have to give up attachments to

the established medical community. Many choose to work outside the

insurance system and some may not have hospital privileges. The rewards of

really helping patience though outweighs many of the difficulties they

choose to face.

My attitude when told by a doctor 'it won't work' is 'will it hurt me' and

'if not lets try it.' I've had to fight for blood tests the doctor didn't

believe it. They are thrown for a loop when I tell them it's my blood and I

believe in the test and if I'm willing to be stuck with a needle and pay for

the test I don't see why it's a concern to them. It throws them for a loop.

If they still won't do it I request a copy of my medical records and walk.

I've been fighting doctors since 1986 and I get what I want and need one way

or the other. I have two doctors, an internist and a rheumy. I make sure

the rheumy knows I will not follow his advice without the concurrence of my

internist. I always request records be sent to each other so they can treat

me in tandem. The rheumys and other specialists learn quickly that I will

not follow their advice blindly. I trust my internist and always run any

prescribed treatment through him before doing it and even then I do my own

independent research in advance so I know what I think and why.

I learned about the AP before I got Lymes/Lupus/RA/Raynaud's. My cousin had

Graves and did the radiation. She went through five years of sheer hell. I

did a lot of research to try and help her but she was interested in a quick

fix (which the doctors always sell the radiation as being) and found info

about AP. I noticed some used it for Graves successfully. I then had a

Graves episode in 2003 after a particularly stressful six months.

[Previously I had hypo (slow) thyroid and took Armour. I went off that as

my body began producing more and more of the hormone.] As I'd seen what

happened to my cousin with radiation I knew I was NOT going to do it (no

way, no how, not ever). I do believe that thyroid disease has a

genetic/hereditary tendency but I think you can ward off problems with diet

and lifestyle. I did not need the AP for my Graves as my thyroid mellowed

out very quickly with some Tapazole, yoga, acupuncture, Chinese herbs and

diet changes. It was a very easy incident which could have become a

nightmare if I let the endocrinologist destroy my thyroid. The thyroid

doctor gets paid for the radiation; he can administer it himself and charge

quite a bit since it's nuclear medicine. I resenting the fact that he

really tried to terrify me about taking the thyroid meds (he did not know

that I knew this was the protocol used around the world for thyroid

problems.) [He also didn't know I've had three cats with hyperthyroid and

knew the meds were helpful]. He also was not licensed for surgery and

therefore extremely opposed to it; again tried to terrify me of the dangers

and tell me I'd never find a surgeon to perform the operation. (He did not

listen when I told him my Mother and her sister had their thyroids operated

on, took Armour, and were fine. My Mother is now 90.) I was equally adamant

about NOT doing the radiation and recommended he find a surgeon he'd like to

work with on my case should it come to surgery or I'd move on. I made it

very clear that I was NOT ever doing radiation no matter what he said. On a

follow up visit he asked if I knew any surgeons expecting me to have failed,

forgotten, changed my mind, etc. I'd done my homework and had three names.

He quickly backpedaled. Surgery was not needed fortunately. And I did

change endos and went through much of the same (they all sing from the same

sheet of music) but he is closer then my internist and is under my insurance

plan so I can get the routine blood tests I need with less inconvenience and

cost. My thyroid appears to be fine now (I'm not on any meds which is

another thing that makes Doctor's mouths fall open...you know the story

'once you start on thyroid meds you will always be on them') and I have had

both hypo and hyper bouts and will monitor at least annually to track any

changes.

Bottom line is you may very well be the only and best advocate you have for

your health. The days of blindly trusting that doctors magically know best

just might get you killed ... but only after a long, costly, and

debilitating illnesses where you get to suffer. Once they get you to a

certain point, they throw up their hands and say sorry can't help further.

So I think that if you are going to be either killed or cast aside you might

as well start taking care of yourself early on before any further damage is

realized. I guess there is the off chance you might be helped ... if you

have a doctor like that hang on to them and teat them well. They are rare

finds.

Do any of you watch the TV show House? I just recently started watching it.

I do enjoy the characters and some of the drama and realize this is TV. One

thing I quickly noticed and do believe is representative of real life is the

process the doctors in the show follow. That in spite of the brilliance of

this team of doctors they are routinely wrong. Every week this best of the

best, super smart, talented and special team of doctors proclaim several

wrong diagnosis before they finally stumble on the true culprit of the

illness. I watch all the unnecessary and PAINFUL tests administered to and

surgeries performed on a suffering patient in an attempt to prove/verify

their diagnosis/shot in the dark. How that, in spite of being wrong so

often, the sure-of-themselves-doctors continue to do their trial and error

testing and drugging of patients. So many sure and snap judgments ... so

many wrong diagnoses. The patient usually lives and all is well ... fiction

is great. The real part is this is how I've seen medicine being practiced

(I even see my vet doing it). It also reminds me of a car mechanic. You

take the car in because it's overheating so the mechanic says

authoritatively it's the thermostat...that'll do it. You wait, pay the man,

drive off, the car continues to overheat. You go back and he says 'oh well

we need to flush the radiation', repeat of before. You got back a third

time and this time it's 'oh well we need in install a new radiator.' If you

are lucky the third time is the charm. You have only wasted time for each

visit, money for each fix, the worry and stress of watching the needle rise

while you are driving; wondering if you will make it to the shop or break

down on the road. Does not seem to happen in good weather or when traffic

is light does it? I see medicine practiced the same way. " I don't know

what's wrong with you but I'm sure this RX will help; if not come back. "

Sure why not? It's another office visit fee realized, time out of your

personal schedule not theirs, another medicine purchased, etc. If you don't

go back it's assumed 'it worked.'

It all can seem to be just a really big pain in the butt. How much easier

to just get a script and take a magic convenient pill and all the ills just

go away. If that process really worked who wouldn't be an advocate of it.

The problem is I've believed in that system and only got worse and worse and

worse. Doctors finally drove me away with their inadequacies and attitudes;

and thank goodness they did. I carry a lot of labels (Lyme's, RA, Lupus,

Reynaud's, Sjogren's, MCS) but consider myself well because I can function

on a daily basis and am relatively pain free (got allow for a few aches and

pains as the years accumulate.) It's been a journey and as difficult as

it's been at times I'm truly glad I was presented with an opportunity to

take it. Today I watch friends and family take drugs, drugs and more drugs,

and wait to get better only to get worse and deal with a multitude of side

effects. I wonder when, or if, they will wake up. I've learned that it's

monstrously hard for people to change their belief systems. I value each

and every one of you for getting to this group, for taking this different

path, and for essentially becoming role models. Every one of us that

recovers is a walking advertisement for this protocol and the associated

lifestyle changes that are necessary. We are doing good works here and we

are helping others who suffer or have a loved one that does. For everyone

of us that has recovered, think about letting that skeptical nonsupportive

doctor know he was wrong. Let him know you are not crippled; you healed

without those dangerous drugs. Give him the opportunity to grow into a

physician vice a shot in the dark/boiler plate spouting diagnostician/script

writing mechanics. I'm so glad to be part of this group. For all the new

folks, please hang in there; I truly believe you are on the right path.

Know that many have trodden the path before you and know where the briars

are as well as the monstrously wonderful views. I think we are all willing

to help however we can.

Sorry for this long winded digression. I apologize if I've offended anyone

by any of my opinions. Thanks for listening. El

Re: rheumatic I'm new - hello

Hi ! Congratulations for standing up for yourself! If these doc's

could feel what we go thru for just one day, they would be more open to

change. Have you found an A/P doc that will start you on Minocin? If not,

go to Roadback.org. Read the rules and hit the " I agree " part and then go to

the Bulletin Board. Ask for Richie. He has a roster of A/P docs across the

country and maybe even the far reaches of the world. We are not allowed to

mention docs by name on that site as no advertisement is allowed. But if

you put in your e-mail address in the top of your post, he will answer you

personally. Good luck and keep us up to date. Dolores

sammiches42 <sammiches42@...> wrote: I just joined this group and

thought I'd say hi. Something happened

yesterday that has motivated me to become more active in researching AP...

I've had psoriatic arthritis for about 10 years. A few years back, my

rheumatologist tried to put me on methotrexate. I took it for a

couple weeks, but it was making me feel sick, and after researching it

a bit online I decided that it wasn't something I wanted to be putting

in my body after all. Unhappy with the other options my doctor had

suggested (Enbrel and the others), I decided to try controlling my

disease with diet and lifestyle. After two years of very limited

success with that, I stumbled upon The New Arthritis Breakthrough and

quickly read it cover to cover.

At this point, I made an appointment with the same rheumatologist in

order to see how he felt about AP. I was pretty skeptical, since he'd

neglected to suggest it as an option the last time, but I figured I'd

give him a chance. He took a look at my hands and expressed

irritation that I'd let my condition go on without taking methotrexate

or Enbrel for so long. I explained that I wasn't very happy with

those options, and asked him if there was anything else I could try.

At this point he began to show a bit of agitation and defensiveness,

which quickly peaked when I asked if he was familiar with AP. He

mentioned Dr. Brown's name, stated, " but they never found any bug " ,

and told me not to " F--- around. You want to be able to use your

hands. Take something everybody knows works! "

I asked him if he'd tried AP with any of his patients, and he said he

had but was very unimpressed. I asked if he'd tried it long term,

since it can take 6 months or more for it to start working, but he was

done talking to me at this point. He basically brushed me off and

said to call him if I wanted to start the Enbrel. At no point in the

conversation was I rude or disrespectful of him, but I found his

unwillingness to consider what I had to say very disrespectful toward

me. He was even defending himself from accusations I had not made,

saying " I get the same amount of money whether I give you Enbrel or

tetracycline, " but at no time had I suggested his position was

financially motivated.

This was a very strange experience for me. The descriptions found in

the New Arthritis Breakthrough of how most doctors react to

suggestions of trying AP turned out to be so accurate, it was scary.

Anyhow, such an unreasonable reaction from my doctor

combined/contrasted with the positive testimonials of so many folks

who've had their quality of life improve on this treatment convinced

me that it's something worth exploring. I look forward to discussing

and learning more about it here.

Sincerely,

Carbone

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

To :

I too am pretty new here. My 16 year old daughter was

dx'd with Scleroderma in late May. When I was

preparing to take her for a " second opinion " to Dr. T,

in Boston, the same Dr. T that headed the Minocycline

in Early Diffuse Scleroderma Study, I scheduled an

appointment with my daughter's lifelong pediatrician

to tell him that we were seeing Dr. T in Boston and to

ask for his cooperation. I showed him some of the

info, Dr. T's credentials, and yep, just as so many

before me describe. You'd of thought I had just went

in and said, " I found a witch doctor and I'd like some

help with the voodoo that he prescribes. " The

pediatrician got up and walked out on me, told me that

he would not be a part of any alternative treatment,

and accused me of not trusting him (well that was a

self fulfilling prophecy.

has now been on the Minocin for 19 days, she

has seen great improvement, finger ulcers GONE,

contrature, GONE, swelling almost GONE, fatigue, very

improved.

We all have alot of work to do to spread our stories

of success so little by little the doctors will

listen.

Cheryl Ferguson

__________________________________________________

[Guest guest]

Cheyrl,

So glad to hear the Minocin is working! It's unfortunate that good

relationships with doctors can go sour so quickly when ego and closed mindedness

get in the way on their part. My estranged doctor is going to get a nice letter

reminding him that his patients have the final say about what does or doesn't go

into their bodies, and that it's unbecoming of a professional healer to refuse

any safe and possibly effective treatment that a patient might want to try, even

if only to " humor " them.

All the best to you and your daughter,

Cheryl Ferguson <cgjcferguson@...> wrote:

To :

I too am pretty new here. My 16 year old daughter was

dx'd with Scleroderma in late May. When I was

preparing to take her for a " second opinion " to Dr. T,

in Boston, the same Dr. T that headed the Minocycline

in Early Diffuse Scleroderma Study, I scheduled an

appointment with my daughter's lifelong pediatrician

to tell him that we were seeing Dr. T in Boston and to

ask for his cooperation. I showed him some of the

info, Dr. T's credentials, and yep, just as so many

before me describe. You'd of thought I had just went

in and said, " I found a witch doctor and I'd like some

help with the voodoo that he prescribes. " The

pediatrician got up and walked out on me, told me that

he would not be a part of any alternative treatment,

and accused me of not trusting him (well that was a

self fulfilling prophecy.

has now been on the Minocin for 19 days, she

has seen great improvement, finger ulcers GONE,

contrature, GONE, swelling almost GONE, fatigue, very

improved.

We all have alot of work to do to spread our stories

of success so little by little the doctors will

listen.

Cheryl Ferguson

__________________________________________________

[Guest guest]

Hey, Cheryl!

Sally in Little Rk here.

Good for you!!! And so glad to hear about your dtr's improvement!!

What a jerk that doc was to you and I HAD to tell you I laughed really hard at

your " You'd have thought I was asking to go to a Witch doctor... "

and you are in my thoughts and prayers-Hang in there!

Sally in L. Rk

Re: rheumatic I'm new - hello

To :

I too am pretty new here. My 16 year old daughter was

dx'd with Scleroderma in late May. When I was

preparing to take her for a " second opinion " to Dr. T,

in Boston, the same Dr. T that headed the Minocycline

in Early Diffuse Scleroderma Study, I scheduled an

appointment with my daughter's lifelong pediatrician

to tell him that we were seeing Dr. T in Boston and to

ask for his cooperation. I showed him some of the

info, Dr. T's credentials, and yep, just as so many

before me describe. You'd of thought I had just went

in and said, " I found a witch doctor and I'd like some

help with the voodoo that he prescribes. " The

pediatrician got up and walked out on me, told me that

he would not be a part of any alternative treatment,

and accused me of not trusting him (well that was a

self fulfilling prophecy.

has now been on the Minocin for 19 days, she

has seen great improvement, finger ulcers GONE,

contrature, GONE, swelling almost GONE, fatigue, very

improved.

We all have alot of work to do to spread our stories

of success so little by little the doctors will

listen.

Cheryl Ferguson

__________________________________________________

[Guest guest]

El... What a great letter. Isn't it wonderful how the body can often

repair itself if we give it the time and nutrients to do so. I firmly believe

that as in the way of nature, things do go wrong with our bodies. But we can

often repair the problem ourselves if we give ourselves a chance and time to

heal. Certainly we must think this out with a fair amount of common sense, but

several times I have decided to wait a bit before undergoing non life

threatening medical treatment....and guess what...the problem usually resolves

itself.

The one incident that comes to mind was a " trigger finger " on my right

hand. I would get my finger stuck into a curled position because evidently

the ligaments were not setting into the bone correctly and getting off track so

to speak. It was annoying and happened several times a day. The only way I

could unstick the finger was to drop my hand to my side and shake it several

times, sometimes for two or three minutes until the ligament fell back into

place. It was painful and decided to see a doctor. I was told it would only

get worse and surgery was my only option. I decided to let it go for a

bit...it was after all annoying not life threatening. About six months later

it

started to resolve itself and I noticed slowly I had less incidents.

Eventually as my body rebuilt itself the " trigger finger " went away completely.

That was four years ago and I have not had a repeat of the problem. Many

times we are tempted to rush into a quick fix medical treatment because we have

been trained that this is what we must do. I would ask everyone to rethink

this and if the situation is appropriate, think about giving your body time

to heal on its own. It certainly has worked most times for me. Martha

[Guest guest]

hi,Bonnie in seattle here with a question

I have been on AP for 10 months now for reactive arthrits,It took me 24 yrs

to get a dioganosis & another year to get on AP as soon as i started my feet

started to ache then a lot of other places where it has hurt in the past ,2

flair ups, ect I guess it is working because of the moving aches ,but now

all of a sudden i'm getting " mussle dances''for lack of a better word, in my

stomach & innerds This isn't painfull but curious because I never had this

befor at least not in my insides ,maybe in my arm or leg or somewhere i could

see it twich. I never would assicoate it with the Re A

on to the question ,is this normal? has anyone else had these?Is this a

sighn of healing?

[Guest guest]

Hi Bonnie,

No I never had anything like what you are describing but the mycoplasmas

settle in different parts of the body sometimes. That is where you will have

symptoms.

Are you taking acidophilis? Being on AP for 10 months you need this for

your " innards " . Not that this will cause your symptoms to go away but if

your mycos are there...you need the good bugs (acidophilis) to take over

when the mycos die off.

I would just watch and see what happens. If things get worse get back to the

list and maybe Ethel will have a solution for you. If they stay the same for

a long time I would get back to us also.

This is just my thoughts.

cooky

AP 9 yrs

Re: rheumatic I'm new - hello

hi,Bonnie in seattle here with a question

I have been on AP for 10 months now for reactive arthrits,It took me 24

yrs

to get a dioganosis & another year to get on AP as soon as i started my

feet

started to ache then a lot of other places where it has hurt in the past

,2

flair ups, ect I guess it is working because of the moving aches ,but now

all of a sudden i'm getting " mussle dances''for lack of a better word, in

my

stomach & innerds This isn't painfull but curious because I never had this

befor at least not in my insides ,maybe in my arm or leg or somewhere i

could

see it twich. I never would assicoate it with the Re A

on to the question ,is this normal? has anyone else had these?Is this a

sighn of healing?

[Guest guest]

Yes, Bonnie, I get " muscle dances " too! Great words, I never would have thought

of it. Those nasty mycoplasma buggers are dying off and emitting a toxic

substance behind. They don't die off easily. A/P 7 months. for S/D & R/A.

All part of the healing process. I take a half of a 5 mg tab of valium when it

gets real annoying. Valium is a muscle relaxer. There are others, but my doc

refills mine, so it doesn't cost me anymore than my $1.00 copay. Dolores in

NYC.

Beaconbonnie@... wrote: hi,Bonnie in seattle here with a question

I have been on AP for 10 months now for reactive arthrits,It took me 24 yrs

to get a dioganosis & another year to get on AP as soon as i started my feet

started to ache then a lot of other places where it has hurt in the past ,2

flair ups, ect I guess it is working because of the moving aches ,but now

all of a sudden i'm getting " mussle dances''for lack of a better word, in my

stomach & innerds This isn't painfull but curious because I never had this

befor at least not in my insides ,maybe in my arm or leg or somewhere i could

see it twich. I never would assicoate it with the Re A

on to the question ,is this normal? has anyone else had these?Is this a

sighn of healing?