alternative treatment

[Guest guest]

Hello.

I'm new to this group and I'd be interested information in this also.

> i'm looking for suggestions for alternatives, nutrition, herbal,

> holistic etc.. heard of " beyondprobiotics " , " healthline " , ;but that's

> it, besides one md beyond my financial capabilities. i'm in nyc,

> you'ld think it would be the alternative med mecca, but m;y knowledge

> in this area is limited. anybody with some ideas? i'm open.

[Guest guest]

I appreciate 's response, and agree with her that most of the

people using the BB are there because they are experiencing bad times

and that those who are doing okay probably aren't posting. I also

realize that RA and PR are not the same diagnosis. I mentioned the 2 RA

examples because one is my nephew whom I know well and one is his

friend's mother, whom he knows well. She has been off of ALL drugs,

including antibiotics, for 3 years and has no symptoms of R.A. I will

be inquiring while at the new Dr's for how many he's treated, and how

many he thinks have gone into remission, if he will share that

information. Most of the patients who come to see him have been

diagnosed with R.A.

I'd also like to talk him into putting on a seminar in Eastern Iowa

where other Drs. can quiz him, hear his theory and about his therapy. I

notice he's getting close to 65 yrs., so he may be retiring soon. If

it's a successful treatment, it would be good to have others take it up

if he retires.

As to studies, I remember reading that The Road Back Foundation has

conducted studies because they could not get government or drug company

backing for the studies. Long term antibiotic therapy has been used in

other countries for a long time. This is a very similar story to the

one I encountered when trying to get off of Hormone Replacement Therapy

a few years before the news came out that this could be dangerous for

many women. It took me 2 years to find a medical doctor who would even

talk to me about it, let alone work with me on bio-identical hormones.

The first thing any of them would say is " there haven't been any

studies... " The reason there weren't any studies is because no drug

company is going to fund a study which might show that there is a

better, safer, less expensive way than their drugs, AND drug companies

are one of the largest contributors to political campaigns, which means

no government studies will be done. I was in elective office for 8

years and I can tell you that politics and economics determine what

drugs are studied, recommended and used, and that diseases and drugs are

BIG BUSINESS.

I have been on a bio-identical Progesterone which is compounded by a

pharmacy about an hour from me. I don't know what a bone scan would

look like now after having been on a big dose of Prednisone and not

exercising most of the summer, but previous scans showed that I was

increasing bone density in the hip region. I had been losing density

before. My Rx of bio-identical Progresterone cream costs about $18/mo

compared to my friend's Fosomax at $72.

I imagine the Dr. in Australia who discovered that ulcers were caused by

a bacteria instead of stress met the same resistance from the

establishment. thank goodness he persisted.

I will continue posting my experience if that's okay with this list. I

realize I may be one of the 20% or so who are not helped with antibiotic

therapy. If so, I'll post that too.

thanks.

Bev Hannon, Iowa

[Guest guest]

Bev,

A couple of things.

First, of course you are welcome to post a description of your experiences

to the group.

Secondly, there has been at least one important government study on

minocycline that has been done (48 weeks).

The Minocycline in Rheumatoid Arthritis (MIRA) trial:

http://www.niams.nih.gov/ne/press/1995/01_14.htm

There have been several other studies sponsored by different parties, some

of which I posted recently.

The results show that minocycline is useful in RA, but it isn't clear why.

Nobody has proven the infection connection.

Also, an important question relevant to our particular discussion is whether

your nephew and his friend's mother actually had RA in the first place.

Rheumatology is a realm where misdiagnosis abounds. That's one reason why

studies are useful: there is more certainty that the subjects do indeed have

the diagnosis in question.

Why doesn't Dr. Sinnott publish the findings from his practice in a

rheumatology journal? A few well chosen case studies complete with lab

values and x-rays and/or MRIs before and after treatment would go a long

way. If he could demonstrate that aggressive, erosive, deforming disease

could be halted by his methods, that would be impressive. That sort of

evidence would be far more convincing than testimonials.

's points are well taken. The stakes in RA are high. Untreated,

undertreated, or inappropriately treated RA can have very serious

consequences. Early, aggressive treatment is key. If you stick with a single

treatment that isn't working, possibly for years, you may experience

irreversible damage and find yourself in an inflammatory state that is hard

to tame. RA affects much more than the joints alone.

Many people with RA who are diagnosed correctly and promptly do very well on

older, relatively cheap DMARDs such as methotrexate, sulfasalazine, and

hydroxychloroquine (all of which have been in use for decades).

So far, although it is considered a DMARD, minocycline has not been

demonstrated to have a disease-modifying power equal to or greater than

methotrexate and the biologics. And methotrexate is still the gold standard.

As said, the posts from the group that you might happen to read at a

given point in time are not likely to be representative of the rheumatoid

arthritis patient population as a whole. They are likely to be people who

are newly diagnosed or having serious difficulty. Yet, we have indeed heard

many success stories here.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] alternative treatment

>I appreciate 's response, and agree with her that most of the

> people using the BB are there because they are experiencing bad times

> and that those who are doing okay probably aren't posting. I also

> realize that RA and PR are not the same diagnosis. I mentioned the 2 RA

> examples because one is my nephew whom I know well and one is his

> friend's mother, whom he knows well. She has been off of ALL drugs,

> including antibiotics, for 3 years and has no symptoms of R.A. I will

> be inquiring while at the new Dr's for how many he's treated, and how

> many he thinks have gone into remission, if he will share that

> information. Most of the patients who come to see him have been

> diagnosed with R.A.

>

> I'd also like to talk him into putting on a seminar in Eastern Iowa

> where other Drs. can quiz him, hear his theory and about his therapy. I

> notice he's getting close to 65 yrs., so he may be retiring soon. If

> it's a successful treatment, it would be good to have others take it up

> if he retires.

>

> As to studies, I remember reading that The Road Back Foundation has

> conducted studies because they could not get government or drug company

> backing for the studies. Long term antibiotic therapy has been used in

> other countries for a long time. This is a very similar story to the

> one I encountered when trying to get off of Hormone Replacement Therapy

> a few years before the news came out that this could be dangerous for

> many women. It took me 2 years to find a medical doctor who would even

> talk to me about it, let alone work with me on bio-identical hormones.

> The first thing any of them would say is " there haven't been any

> studies... " The reason there weren't any studies is because no drug

> company is going to fund a study which might show that there is a

> better, safer, less expensive way than their drugs, AND drug companies

> are one of the largest contributors to political campaigns, which means

> no government studies will be done. I was in elective office for 8

> years and I can tell you that politics and economics determine what

> drugs are studied, recommended and used, and that diseases and drugs are

> BIG BUSINESS.

>

> I have been on a bio-identical Progesterone which is compounded by a

> pharmacy about an hour from me. I don't know what a bone scan would

> look like now after having been on a big dose of Prednisone and not

> exercising most of the summer, but previous scans showed that I was

> increasing bone density in the hip region. I had been losing density

> before. My Rx of bio-identical Progresterone cream costs about $18/mo

> compared to my friend's Fosomax at $72.

>

> I imagine the Dr. in Australia who discovered that ulcers were caused by

> a bacteria instead of stress met the same resistance from the

> establishment. thank goodness he persisted.

>

> I will continue posting my experience if that's okay with this list. I

> realize I may be one of the 20% or so who are not helped with antibiotic

> therapy. If so, I'll post that too.

>

> thanks.

>

> Bev Hannon, Iowa

[Guest guest]

For now, anyway, mine is a success story. I had a rough year and a half

before I got good relief. That relief came with Enbrel. I have very

little pain, inflammation, and joint damage. I have had not adverse

side effects except for an occasional mild injection site reaction,

about like a mosquito bite. I only hope that Enbrel will continue to be

my miracle drug.

Sue

On Friday, October 6, 2006, at 07:02 AM, wrote:

> As said, the posts from the group that you might happen to read

> at a

> given point in time are not likely to be representative of the

> rheumatoid

> arthritis patient population as a whole. They are likely to be people

> who

> are newly diagnosed or having serious difficulty. Yet, we have indeed

> heard

> many success stories here.

[Guest guest]

Antibiotics also, from what

> I've read, are not disease-modifying drugs, meaning that the damage

> to joints and organs can continue, even though the person is feeling

> better.

No, that's incorrect. Minocycline is recognized as a DMARD.

Sierra

[Guest guest]

>

> For now, anyway, mine is a success story. I had a rough year and a half

> before I got good relief. That relief came with Enbrel. I have very

> little pain, inflammation, and joint damage. I have had not adverse

> side effects except for an occasional mild injection site reaction,

> about like a mosquito bite. I only hope that Enbrel will continue to be

> my miracle drug.

>

> Sue

>

Sue--

Quick question if you don't mind...I'm curious as to how long it took

you to notice that Enbrel was working.

I know that we are all different and some see relief almost

immediately and for some it takes quite a while. I've only had two

weekly injections so far, so I'm hopeful that I'll start noticing a

difference shortly.

dordale

[Guest guest]

I've been on it for almost two years, so I can't really remember how

long it was before it took effect. We really should write these things

down, LOL. I had been without a DMARD for a month waiting for my

insurance company to approve me for the Enbrel. As I remember, it

wasn't long before the Enbrel got rid of the pain and inflammation that

had built up during this time. I'm sorry that I can't be more specific.

Just give the Enbrel a few weeks, and I hope that it will help you as

much as it helps me.

Sue

On Saturday, October 7, 2006, at 01:13 PM, dordale8 wrote:

> Sue--

> Quick question if you don't mind...I'm curious as to how long it took

> you to notice that Enbrel was working.

>

> I know that we are all different and some see relief almost

> immediately and for some it takes quite a while. I've only had two

> weekly injections so far, so I'm hopeful that I'll start noticing a

> difference shortly.

[Guest guest]

She's right. We aren't getting better. When I was first diagnosed

in 1996, the goal was remission, now all i see is to slow the

disease. If we were happy with the results we wouldn't need to come

here for support. We would be out there living the lives we

started. So I say support all and not just the ones on traditional

meds. Now, that's not to say abandon modern medicine but why should

we trash alternative medicine either or those wanting to try it

either.

By all means newcomers take the traditional route and I think that's

why we have the friction here. I think some are afraid the newcomers

won't take the traditional route. So newcomers please take the

traditional route and hopefully if you are lucky you can find a

doctor who will treat you individually and not try to give you a one

regimen fits all approach. One who will listen to your complaints

and not brush them off. I complained about my hips to 2 different

rheumatologist long before I lost use of them, one gave me more

prednisone (it takes 60 mg for me to feel relief) and corticosteroid

injections and the other told me it was my knees causing the

mechanical problem not my hips so proceeded to give me steroid

injections in my knees and now this new one says to replace them.

What happened to saving them in the first place? bone density scan -

- maybe meds to protect the bones, other things should have been done

to treat my relentlessly painful hips. Arava was added by one with

hellacious side effects and MTX was added by the other. No relief.

the hip continued to worsen.

It's been 11 years and I am sitting here with multiple joint damage,

my complaints fall on deaf ears at the doctor's office (my painful

skin, severe edema, abdominal pain, etc.) or am usually given more

prednisone. No pain medicine is prescribed when I ask for pain meds

only given Darvocet which does nothing but keep my liver enzymes

elevated and prednisone is the reason I need both hips replaced. the

prednisone didn't keep me working nor does the MTX or Enbrel or

Remicade or Humira or Kineret or anything else I have been given and

now Coumadin interferes with me taking ibuprofen a painkiller and

many other pain meds, so for me the benefits did NOT outweigh the

risks.

And I think that's what it comes down to --- DO the benefits outweigh

the risks for YOU personally, you can't decide for anyone else. All

we can do is support their decisions or say nothing. One regimen

does not fit all. I wish it did. Does it mean not to at least try

them. Of course not. As you see I have tried many. I believe many

are helped by the traditional meds so I still support them as long as

others feel they are helped by them, and I also believe some are not

helped and for those who are not helped, stop blaming the victim. And

I am not saying you are blaming them but I have been reading some

very angry sounding support messages that really don't sound like

support. Let's support everyone traditional and nontraditional and

maybe make suggestions of things to keep trying or keep searching for

the right doctor therapy combo. And we must face it, rheumatologists

are scarce -- people are not becoming rheumatologists in vast

numbers. the ones remaining are overworked and overwhelmed so even

if he started out a good one, doesn't mean everyone will have a good

experience with him. So newcomers keep searching for the answers if

the traditional treatment isn't working for you. try another and

another. if the doc is always too busy or doesn't listen and you're

worse find another and another. be active in your recovery. don't

let the disease get the best. and in the meantime while searching for

your ideal combo therapy, keep smiling. Keep living as much life as

you can.

in peace,

Ebony

[Guest guest]

Thanks, Sierra,

I saw what posted... that it is considered a DMARD, though not

usually a first line choice. That, I think, goes along with your

experience. I think you are using it because of bad reactions to the

first line DMARDS, correct?

> Antibiotics also, from what

> > I've read, are not disease-modifying drugs, meaning that the

damage

> > to joints and organs can continue, even though the person is

feeling

> > better.

>

> No, that's incorrect. Minocycline is recognized as a DMARD.

>

> Sierra

>