Finding a cure for RA

March 18, 2001

As I was reading through the mail recently, I have seen many posts about

alternative vs. conventional treatment. a, and I have always

encouraged people to share their experiences with others and that will

never change. However, my personal experiences and medical background push

me into reminding everyone of a few things.

First, there is a difference between a cure and remission. Changes in

dietary habits, vitamins or medication may lead to a remission but they

seldom cure true RA. As we all know, RA can be misdiagnosed and if the

joint pain a person experienced was not attributed to RA but actually

caused by a food allergy, it stands to reason that a change of diet will

stop the symptoms. As with any allergy, if you go back to eating the foods

which caused the reaction, the joint pain will reappear. Medication may put

you into a medicated remission but only rarely will people be cured. When

we hear of cures in this situation, it is most likely that a person is in

the fortunate group of people who go into remission within the first year

or two and never have another episode of RA - that can happen whether they

take medications or not.

Yes, I pray we will find cure but it seems unlikely that all RA will be

cured with one treatment because the cause is different for different

people. If your RA was triggered by an infection, antibiotic treatment may

be the miracle drug for you but if you inherited RA, it is less likely to

be as effective.

RA is a disease of remission and flare so any treatment may appear to be

more effective than it actually is - for a short period of time. When I was

first diagnosed, my RA would go into near remission for a year at a time

but it always came back. For many people as they get older, the RA becomes

less aggressive, in my case, it is becoming more aggressive.

When a read the statement 'RA won't kill you but the pills that are

prescribed to us can kill us.', I am alarmed and have to speak out. The

most dangerous thing about RA is that it can kill you - RA can strike the

internal organs and kill you. RA is an aggressive disease and that is why

we need to treat it aggressively. My grandmother and great aunt both died

when their RA hit the heart and lungs. Within the last few months, I have

been showing signs that the RA has attempted to hit my heart and lungs and

now possibly even my liver. The reason I am alive today is because the gold

and Enbrel have stopped the RA from successfully hitting my internal organs.

Are there risks from the medications I take? Yes, of course there are

risks. I look at it this way, if the Enbrel kills me in 5 years, that is 5

years longer than I would have had if I had not been taking it. The risk is

worth it to me.

My disease did not cause joint damage for thirty years - the joint pain and

inflammation would come and go but my RA was very migratory and never

stayed in one place long enough to cause erosion of my joints. I was lucky

in that respect. Recently, my non aggressive disease has been making up for

lost time and I am now showing erosive changes in my shoulders, knees and

spine as well as the scaring of the internal organs. Some of my liver tests

are out of line and the only explanation they can come up with is that the

RA is causing it. All these years, it was just a sleeping giant and now I

am in the battle of my life.

I am thankful that when the pain became more severe, my doctor started me

on a DMARD rather than waiting for the joint damage or signs from the heart

and lungs. These toxic terrible drugs are the thing that is saving my life

and mobility today. We monitor my labs faithfully and watch for even the

slightest changes. At the first sign of problems we investigate further. As

cautious as we are, there is still a risk that the drugs can cause a

problem but it is a risk that I have to take.

As a nurse, I have to caution people against taking themselves off their

meds without consulting their doctor. Your doctor may have suggestions of

how to most safely reduce dosages or discontinue the drug if that is what

you plan to do. It is also important to keep in mind that some of these

drugs can remain in your system for a long time after they are discontinued

- Arava for up to a year and gold injections for up to two years are two I

know of off the top of my head. Another point to remember is that if you

have to go back on the drugs, it may take many months for the medications

to work again.

It concerns me when I hear people say they have had their fill of

conventional medicine and are not going to use it anymore. I understand how

you feel, but please make sure you have all the facts - pro and con -

before making such a decision.

Pat

March 19, 2001

Hi Pat,thanks for such an enlightened email. I know from personal

experience,all the lows and highs that goes along with RA. So many of us

have at one time or another decided to end our meds and like most,I

ended up in the hosital in severe flares.

FLY! where have you been? It is especially nice that you returned in

time for girls 8th year of adoption.We had 4 couples over and they

all fussed over her and told her how beautiful she is,then we took

apicture of her wearing her Irish fedora.(for the people that don't

know, is our special Golden/Collie that we saved from execution and

has brought us such joy.

Today I am so so sore and the pain is right down my backside to my knees

but our party was worth it. I love cooking and entertaining but this is

the first dinner party I have hosted for 2-3 years.Don is so good about

helping me and he does all the cleaning up after.

Hugs to all

June

March 19, 2001

I also have personal experience with stopping conventional meds. For several

years I refused to take any " toxic " meds. I joined an organic food co-op and

had nothing but fresh juiced vegetables. I took every herb and vitamin that I

was told would help. I've spent a fortune in my search for relief. What I

got was severely eroded joints. In the years that I went without treatment, my

knees and ankles eroded to the point of needing replacements. In my eyes I gave

alternatives a chance, but paid to high of a price when they failed.

I tried so many of the different things listed at MedicineNet's " Arthritis

Quackery "

http://www.medicinenet.com/Script/Main/Art.asp?li=MNI & ArticleKey=282

and now realize how much money I spent based on books that were written.

People spend billions of dollars on unproven cures in the desire to get well.

Arthritis is the number one disease that is targeted for these bogus cures.

Still to this day I try things that I feel are safe in my effort to get well.

The difference is now I compliment my traditional treatment with alternative.

As all of you that know me know, I think that nutrition plays a very big part in

our overall health. My latest dietary changes of eliminating caffeine, meat,

dairy and refined sugar have not helped my arthritis one bit. In fact my labs

have gotten worse. So today I finally took my first injection of MTX. It

was the most difficult thing I've had to do.

I did NOT want to put that toxic medicine in my body. I strive to keep as many

toxins out of my life and here I am injecting it into my body. It's taken

months of reading and soul searching to get to this point, but I know I made the

right decision. My latest lab tests confirm that I had to do it.

No I won't go back on anything I've eliminated because I have seen benefit from

stopping all of them, especially in the GI department. I have no more gas, and

no more constipation and best of all no bloating! I'm slowly loosing weight

which will take the stress off of my joints. Drinking lots of water has made a

difference in my skin.

I am very glad that alternative medicine and traditional medicine are beginning

to merge into complimentary medicine so that we have the benefits of both

worlds. I think the elimination diet is worth a try because there are so many

food allergies that cause symptoms such as arthritis. I also am a very strong

believer in antibiotics for arthritis. There are several types of arthritis'

that are caused by bacterial infection. I think a few of us may benefit from

antibiotics, but only those with an infectious cause.

For the majority of us we have to wait for the scientists to find it in our

genes.

Rheumatoid arthritis affects each of us different. Some of us have a mild case

with occasional flares and is limited to a few joints. Some may go into

remission for several years. Other have severe RA which involves both joints

and organs of the body. The life span of people with RA is 30% shorter. RA

can be lethal to some of, especially those that have had the RA strike the heart

or lungs. Some of us don't have RA at all.

a

March 19, 2001

Delaine,

I have a very long fuse, but the things you have said in this post have really

struck a raw nerve. I have 3 doctors in my family, none of which take kickbacks

from drug companies. Both of my husband's parents have been doctors for over

50 years. My BIL is also a doctor. If there were any secret cures for this

wretched disease, I am sure that they would have let me in on it instead of

watching me suffer for so long.

The health care in this country is in crisis, but it is the insurance companies,

not the physicians, that dictate what treatment and medications we can or can't

have. Sure there are doctors out there that put their pocket book first, but I

believe that the majority of our health care professionals are in this because

they truly care. The doctor that wrote Prescription For Nutritional Healing,

whose advice you've taken over your own doctor's advise, made millions on his

book and is getting ready to make millions more with his next book. His

motives are the ones I would question.

There are so many of those heal yourself books out there, yet where are the

studies to back up their claims? Other than being a MD married to a

intuitionalist, what qualifications does and Phyllis Balch have?

The book includes treatments that have not been widely studied and many

treatments can be very expensive. Some advice lacks scientific support, and RA

is to serious of a disease for anyone to do anything more than to use the book

as a guide to eat healthier. It is your right to decide what meds you take, but

I am very concerned that you are believing everything you read in Prescription

For Nutritional Healing. I've been in your shoes and have suffered the

consequences of believing books and taking my health into my own hands, of which

I am NOT qualified to do.

You've stated many times that you have a lot of autoimmune diseases in your

family. I am very worried that you will suffer the consequences like I did.

Your statement:

Isn't it amazing that to cure my RA, all I really needed to do was drink

pure water and take raw garlic (to cure up my yeast problem.)

If it were this simple, this list wouldn't be in existence because there would

be no need for it.

Please remember that bone erosion can occur without inflammation. I have high

calcium in my blood from this disease chewing up my bones. My water is very

good well water that tested purer than bottled water.

RA WILL kill and HAS killed members of our group's family.

I wish you continued success with your health. I hope you think twice about

believing in the books that you read and doubting your doctors.

a

----- Original Message -----

From: Jim & Delaine Lowry

Sent: Sunday, March 18, 2001 3:33 AM

Subject: [ ] Finding a cure for RA

I'm on arava a little bit. The last prescription that I got was

2/12/01 and I still have 11 left. This is the only drug that

I'm taking...no pain medication because I don't need any.

I followed the advise of others that have found a cure through

natural means and therefore, I did not start going off of the

arava until I felt much, much better.

I'm taking this a day at a time as I had to take the disease

one day at a time.

The main thing is that I'm consistently getting better and

can see the possibility of getting off dmards completely.

I'm not sure why I keep taking the arava....but in 33 days,

I took 19.

You people that have been on this list for a couple of years

may remember my posts of how badly that I hurt and how

I had a pity party for myself a few times.

I was listening to music from the radio today and started

dancing with the music. I thought back to 6 months ago

and how I couldn't have done it then.

Just 6 weeks ago, I went to a neighbor's house to do

exercises with her. She is 61 years old and was starting

an exercise program. I couldn't do anything. I was so

anemic (this was before I started taking the vitamins that

I'm taking now.) I just sat on the bed and watched her

exercise and wondered if I'd ever be able to exercise again.

At that point, just 6 weeks ago, I didn't have pain but I

had no stamina and still couldn't seem to get very much

done.

To be as sick as I was 2 years ago to where I am now is

a miracle. I'm still not 100% but I have hope and am really

positive that I will get better.

The yeast infection that I've had for about 4 years is almost

gone. So, for me, the yeast played a very definite role in my

RA.

I still feel that I have RA. But for so long, it felt that I had an

alien inside of me. Now the RA is there...but, I feel it getting

weaker and me getting stronger.

My husband can see the difference also. And I think back

to Christmas when I thought I was much better and see that

I was still sick at Christmas. So, as I get better and better

I remember how sick I was and notice the gradual improvement.

I don't advocate quitting dmards or pain killers...I didn't. I

just started changing my diet and as I did that and noticed

improvement, I changed my medication accordingly.

I just feel that doctors are treating our symptoms and are

not getting down to the reason that we got RA to begin with.

For myself, I feel very strongly that all my problems with

auto-immune which includes RA and hayfever have been

caused by yeast. One doctor had me on antibiotics for

a urinary tract infection for 6 months. Another doctor

put me on birth control pills while I had a yeast infection.

I had athlete's foot as a child so the yeast has been with

me a long time.

For about 30 years, my feet looked horrible from the yeast

that was on them in the form of athlete's foot and toe nail

fungus. My feet are so beautiful now.They look like feet of

a beautiful person. As the prednisone and mtx took its toll

on my body, my skin looks like I'm 10 years older than my

true age of 49.

If I had continued to follow the advise of my RA doctor,

I would still be in constant pain and be on enbrel or something else. I'd

still be taking sleeping pills and using my husband's percosets. The last pain

medication that I

was on was vioxx50 and it only masked the pain. So, I've

done the medical route.

It's getting easier and easier for me to follow my diet.

My husband eats an ice cream cone in front of me everyday and I don't even

want one anymore. The fact that I'll eat

raw garlic should show that I'll do whatever it takes to get

well. And to not have pain is SO WONDERFUL that I

thank God every morning when I wake up and still have

no pain.

I know that my body is still very fragile and that if I were

to start eating sugar and a lot of carbohydrates, my body

would be right back in the bad shape that it was in.

So, I just want to encourage everyone to continue looking for answers.

Remember that our doctors see us 15 or 20 minutes a month. They get kickbacks

from the prescriptions that they prescribe. Pharmaceutical plants are in the

business of making money and keeping us buying their products for life. RA

won't kill you but the pills that are prescribed to us can kill us.

All I have to do is look at my hands. They show the signs of mtx and

prednisone use. They look like the hands of an 80 year old person or alligator

skin.

I wish that someone had told me that I might cure my RA through diet before I

started on all the harmful drugs that I put into my body.

So, I continue to be on every list that I can be on and continue reading

everything that I can read. If there is a way to cure myself, I'll do it and I

hope that all of us continue to tell each other about things that have helped us

and continue giving each other support.

This list kept me sane when I was the sickest. I felt that no one understood

me except people on this list. And it was good therapy for me to vent my

frustrations over the disease and my family that didn't understand and the

depression that goes along with the disease.

Delaine

March 19, 2001

a, thank you for echoing my thoughts but with much more eloquence than I

could have found. I have tried it all in over 30 years of this

disease--remissions happen---and healthy eating is good--and I do swimming and

yoga and all sorts of healthy mind-body things---but I still take my meds and

get my blood work done and listen to my doc--I stipped looking for miracle cures

awhile ago and started just doing the next right thing for myself and my body

with the help of a physician that I trust who listens to me.

thats all

Alix

Alix M. Hall

ALKAMCA@...

" My darling girl, when are you going to realize that being normal

is not a virtue; rather it denotes a lack of courage. "

-- Frances Owens

----- Original Message -----

From: a

Sent: Monday, March 19, 2001 11:24 AM

Subject: Re: [ ] Finding a cure for RA

Delaine,

I have a very long fuse, but the things you have said in this post have really

struck a raw nerve. I have 3 doctors in my family, none of which take kickbacks

from drug companies. Both of my husband's parents have been doctors for over

50 years. My BIL is also a doctor. If there were any secret cures for this

wretched disease, I am sure that they would have let me in on it instead of

watching me suffer for so long.

The health care in this country is in crisis, but it is the insurance

companies, not the physicians, that dictate what treatment and medications we

can or can't have. Sure there are doctors out there that put their pocket book

first, but I believe that the majority of our health care professionals are in

this because they truly care. The doctor that wrote Prescription For

Nutritional Healing, whose advice you've taken over your own doctor's advise,

made millions on his book and is getting ready to make millions more with his

next book. His motives are the ones I would question.