Re: testimonials website?

[Guest guest]

I am not sure this will work. When you get to the bottom of the page of Ethel's

story there is a place to click for more stories.

Eva

ETHEL, rheumatoid arthritis/polymyositis

In July 1972, at 46 years of age, I suddenly began experiencing pain and

swelling in my right big toe which prevented me from wearing a shoe on that

foot. The company doctor diagnosed it as gout and prescribed butazolidin. It

didn't help. By October 1972, both feet were consumed with pain and swelling. I

could hardly walk, and shuffled around in large, soft slippers. Up to this time

I had been a fairly healthy individual - married with three children, and

working in a very stressful position. My internist thought it was rheumatoid

arthritis but tests were inconclusive. Finally he sent me to an orthopedic

surgeon to see if it might be neuromas causing the problem. But the surgeon

thought it acted more like rheumatoid arthritis. They kept testing for RA but

the results were always negative. I was put on Indocin. It didn't stop the pain

or inflammation, so I stopped taking it. By December 1972 the shoulder, knee,

ankle and wrist joints became involved. I could no longer

dress or bathe myself. There were times I couldn't lift my arms to feed myself

and needed help getting up and down. When I managed to drop off to sleep and

then turned in my sleep, I was immediately awakened in great pain and stiff as a

board. My internist urged me to stay as active as possible to try and avoid

ending up in a wheelchair. So each day my husband helped me get dressed and took

me to work before going on to his own job. Going to work was hard but, since the

job involved mental and not physical abilities, it helped keep my mind off what

the disease was doing to my body. I tried to keep a positive attitude. There is

a scripture in Proverbs that says " A merry heart doeth good like medicine. " Many

days I struggled when I would rather have been home in bed - and there were some

days I did stay home in bed. Blood work was done again and this time the

results proved positive for R.A. Weekly gold injections were started immediately

but there was no relief. Three

times in the next ten months I had short courses of prednisone, but the relief

was only temporary. By October 1973, my hands, fingers, hips, elbows, neck and

jaw were also involved. There were times I could not open my mouth wide enough

to get a forkful of food into it. I was stiff day and night. My neck was in a

brace. The intense pain never let up. I developed a rash from the gold so that

was stopped. A year and three months had passed. I decided it was time I did

some research on the problem. I discovered there was only speculation in the

medical community as to its cause, and the drugs the doctors prescribe (gold,

Plaquenil, penicillamine, methotrexate, prednisone, NSAIDS, etc.) were only band

aids masking the symptoms. The side effects could be disastrous. If they helped,

it was only temporary, and when you had to stop them you could expect to be

worse than when you started. The drugs could be worse than the disease. It has

been my observation that people who take

these medications still suffer joint damage. Sometimes the medication may make

you feel better for a while, but the disease is still marching on. By 1975,

shoulder movement was severely restricted and there was continual pain. Surgery

was not an option. The surgeon said I would have to learn to live with the pain.

About this time I decided on my own to try traction for the neck pain, and in a

month there was relief from that problem. My condition continued to deteriorate,

and so in March of 1978, I was referred to Dr. Bevra Hahn, a noted

rheumatologist then at the Washington University School of Medicine. She tried

to talk me into taking penicillamine which I refused. She injected my knuckles

and thumb joints with cortisone to try and stop the inflammation but it was only

temporary. From the age of 10 I had been plagued with allergy problems from

early spring until frost every year. There was sneezing and a lot of drainage

down the back of the throat. Breathing was

difficult. Early in 1979, I had allergy tests and began allergy injections for

about a year. It was at this time doctors discovered a large mucus retention

cyst on the floor of the right sinus. By March 1979, my feet were badly

deformed. Walking was extremely difficult. I had metatarsal bars on my shoes.

Dr. Hahn was recommending surgery on my hands and feet. She tried to get me to

start Plaquenil but I refused. So in June 1979, she started a series of

prednisone, but there was no improvement. When it was over, I was worse. I would

work at getting a joint limbered up and the minute I stopped it would stiffen up

again. I had tried Clinoril, Flexeril, Trilisate - none of them worked so I

stopped taking them. I wanted to avoid an ulcer at all costs. I'm told there are

300,000 bleeds and 20,000 deaths each year from NSAIDS alone. On August 16,

1979, I had two moles removed from the left upper back just below the neck. The

next day suddenly my shoulder and leg muscles were

so weak I couldn't do a thing. It was as though my muscles were on fire. I have

a high tolerance for pain, but this was indescribable. I couldn't stand to be

touched. I could only sit on the edge of a chair so my body was not touching

anything. Dr. Hahn insisted I get on something as my joints were being

destroyed. It turned out not only my joints were being destroyed, but my muscles

as well. I now had polymyositis and was put on a high dose of prednisone every

other day. The doctor said by taking it every other day I had a better chance of

getting off of it. He said it was fortunate I had not taken the penicillamine.

I didn't respond to the prednisone. One doctor suggested I needed to go to the

NIH. A group of friends came to pray for me and the pain and weakness from the

polymyositis stopped as suddenly as it started. " Fantastic, " was the way Dr.

Hahn described it. She brought the prednisone down slowly. It was October of

1981 before I was finally off the prednisone.

From 1982 to 1988 I had periods of remission mingled with some difficult

times. I took Ecotrin to try and reduce the inflammation, and used ice on hot

joints for twenty minutes three times a day. At times DMSO proved quite

effective in quieting inflammation. It was during this period my eyes became

very dry. My ophthamologist informed me I had Secondary Sjogren's Syndrome.

Laser surgery closed the lower ducts to try and keep as much moisture in the eye

as possible. Sjogren's Syndrome is a chronic disorder involving decreased

secretions in the glands of the eyes and mouth, resulting in dry eyes and dry

mouth. It may occur alone or along with other connective tissue diseases. In

January of 1988, I had joint replacement surgery on the right hand. The trauma

of the surgery caused both the rheumatoid arthritis and the polymyositis to

flare, and by April I was back on a high dose of prednisone again. It was

finally brought under control. Also about this time a good size

nodule formed on the left arm bone near the elbow. In November of 1988 I had

extensive surgery on both feet and once again the arthritis and polymyositis

flared necessitating I go back on prednisone. In the spring of 1989 I began

having trouble swallowing. The polymyositis had affected the swallowing muscles.

I would chew the food but I couldn't swallow it. The throat was already small

and stiff from the arthritis, and dry from the Sjogren's. Add that problem to

the drainage from the allergies and I found myself unable to eat most foods. The

thick mucus would stick in the upper part of the throat and nothing would go

down but liquids. It was cooked cereals for breakfast, soups for lunch and I put

my dinners in the blender with water and drank them. I tried to explain this to

my doctor. He ordered a barium swallow. The young, inexperienced people giving

the test gave me foods I had no difficulty swallowing such as different

thickness' of pudding. I never heard the

results. It was a very frustrating experience and I decided to just drop the

issue since nothing could be done anyway. It was also about this time hard

nodules were discovered in the left axillary. A biopsy was performed and the

nodes were found benign. It was decided they were the result of the rheumatoid

arthritis. I had yearly mammograms for a time and they showed no change. By

this time I had lost most of my strength. My shoulders and knees were getting

worse as were the allergies and drainage. My rheumatologist kept pushing

methotrexate which I refused. I finally let him inject the right shoulder with

cortisone, but it didn't help. In Feb. 1989, a friend introduced me to Dr.

McPherson Brown's book THE ROAD BACK.* I read that book through at one

sitting and then re-read it. Finally, here was a man who understood exactly what

I was going through. I knew I had to get to Arlington, Va. I was able to get an

appointment in July 1989. In the meantime I had an

appointment with my rheumatologist. I asked him if he had heard of Dr. Brown

and his use of antibiotics in the treatment of rheumatoid arthritis. He said he

had but the treatment had not gone through a normal double-blind study. In a

subsequent visit he said I didn't have to go to Arlington - he would prescribe

the tetracycline for me. But when I said I wanted to take it exactly as Dr.

Brown outlined, he told me he couldn't do that. When I asked why, he said it

hadn't been approved by the College of Rheumatology. Ridiculous! Doctors all

over the country were using the protocol. The antibiotic treatment was safe and

effective. What the rheumatologists have been passing off to patients is toxic

and only masks the symptoms. He did agree to monitor me while on the treatment.

Dr. Brown died in April of 1989, so I saw Dr. Cap Oliver, a rheumatologist who

had taken over Dr. Brown's patients. I had four days of intravenous therapy. The

first day it was 900 mg. Cleocin, then 1200

mg of Cleocin each of the next three days. I was then to take 250 mg.

tetracycline twice a day Monday, Wednesday & Friday and 1200 mg. of clindamycin

intravenously every other week. Later I switched to 100 mg. of Minocin Mon.,

Wed., & Fri. in place of the tetracycline when I learned Minocin was thought to

be more effective. I was told it would take 2-1/2 to 3 years to turn around and

up to 5 years for remission. As mentioned in the book, I had a horrible

Jarisch-Herxheimer reaction which lasted many months. Both the arthritis and the

polymyositis flared. Three nodules appeared on my left ear and one on my right,

and for the third time I again found myself incapacitated. I was so weak I

couldn't lift a sheet to cover myself. I had to be bathed and dressed. I

couldn't even go to the bathroom myself. The joints and muscles were flaring out

of control. Everything seemed to be getting worse. Many people give up at this

point, but Dr. Brown had said this was a sure sign the

medication was working. You could expect to get worse before you got better. I

was committed for the long haul. I certainly couldn't get much worse and there

was no alternative, but it was imperative that the polymyositis be brought under

control. My rheumatologist wanted me to start a high dose of prednisone but

refused to treat me unless I stopped the tetracycline. But the tetracycline was

working so why would I want to stop? That was the end of that relationship! I

called Dr. Oliver, but he didn't have much experience in this area so asked me

what I wanted to do. I had already decided I would take only the amount of

prednisone necessary to keep the CPK on the high side of normal until the

antibiotics kicked in. CPK is an enzyme the body releases when a muscle is

injured. The severity of the damage is measured by the amount of the enzyme

released. Dr. Harold , who did research with Dr. Brown for 37 years,

agreed with this plan, and said I could reasonably

expect the tetracycline to " kick in " and put the polymyositis in remission. I

found a doctor who let me use his lab to check the CPK every six weeks. After

several unsuccessful attempts, on June 20, 1990 I was finally able to start

reducing the prednisone. The polymyositis eventually went into remission, but

the Minocin kept aggravating the arthritis which kept the joints painful and

stiff. There were days when I was so fatigued I did absolutely nothing. This

would last until somewhere between 1 and 3 PM in the afternoon. Then it would be

over. It was like turning a light switch on. One minute I couldn't drag myself

to do anything, and the next I was able to function again. During this time my

shoulders worsened. The doctor thought I had tendonitis along with the

rheumatoid arthritis. I could not lay in bed, but had to sit propped on the

couch or in a recliner. The arms had to hang down or the pain was excruciating.

This went on for several months. Around the end of

December 1990, seventeen months after starting treatment, I began to experience

several days in a row with no pain and less stiffness. I could bathe and dress

without help and gradually experienced improvement in strength and energy. By

May 6, 1991, all symptoms of the disease had left. I was able to reach up into

the first shelf of the cupboard again. The nodules had disappeared. I could work

in the kitchen with very little help. All during this time, I ate a fairly

healthy diet, took CoQ10 and a good vitamin/mineral supplement, along with a

thymus extract now called Thymuplex. I stopped the IVs on my own in November

1991. While the symptoms left at 22 months, it took 4-1/2 years for the blood

tests to return to normal. I should have stayed on the IVs until blood tests

were all normal. I kept a daily diary until the symptoms left, .and charted my

progress monthly. You can lay those charts out and visually see my progress.

May 6, 1992, I had joint replacement

surgery on my left hand and, at the same time, further repairs to two toes.

This time I did not suffer flares of the RA or the polymyositis. The diseases

were under control. In February 1994, I was diagnosed with lymphomatoid

papulosis. The oncologist didn't know if the Minocin was a contributing factor

so I stopped taking it. (I now know that was not the cause.) I began taking the

Essiac herbs three times a day and applying it to the lesions. I made further

changes in my diet and added pycnogenol to my list of supplements. Within four

weeks, the lesions began to disappear. I still take the Essiac once a day as a

preventative. At this time I was functioning quite well. I could do all but

the heavy housework. I was able to walk two to three miles a day with my

husband. In September of 1994, we moved to Texas to be near our children and

grandchildren. Even with all that stress there was no flare of either disease.

(I was still off the Minocin.) January 1995, I began

caring for a 46 year old lady with scleroderma who found the antibiotic therapy

too late. She was totally incapacitated and on oxygen 24 hours a day. I was

completely relieved of duties at home to care for this lady and did not feel the

least bit stressed out. However, when she died in May, I went into a flare that

destroyed almost all of the little cartilage that was left in my feet. In

addition, the tendons and ligaments no longer held the bones in place and I lost

the arch in my right foot. Just getting up on my feet caused excruciating pain -

sometimes so intense I would fall back into the chair. Walking was very painful

and difficult. I went back on oral and IV therapy and after a time went into

remission again, but the pain in my feet remained. In September 1996, an

orthopedic surgeon prescribed a brace for my left foot to try to fuse the talus

and the navicular bones. I was in that brace for 9-1/2 months. In July of

1997, I learned about prolotherapy, a

treatment that could actually cause cartilage to grow, and restore tendons and

ligaments. The doctor who perfected the therapy was now practicing in Ensenada,

Baja California in Mexico - Dr. Milne J. Ongley, a British trained physician in

orthopedic medicine. His skill in the use of this therapy is unparalleled

anywhere in the world. August 4, 1997, my husband and I traveled to Ensenada.

We were there for seven weeks. Dr. Ongley treated my neck, back, hips and feet.

The very first day Dr. Ongley broke up all the scar tissue and some of the

calcification in my feet. When I got off the table, that excruciating pain was

gone. He was able to restore 90% of the range of motion in my neck, and full

range of motion in my back and hips. I am able to do things I haven't done in 20

years such as reaching up to wash the back of my neck, stand to take a shower,

sweep with a broom, turn around and get on my knees in the moving car to reach

something in the back seat, etc. I am

walking better and can stand on my toes again. My feet are more stable allowing

me to climb the two step stool in my kitchen without fear of falling. The

proliferant continues working for up to nine months providing I exercise

faithfully. I still have some pain in my feet but this should improve as I

exercise. If you have suffered joint damage, I strongly urge you to talk to

Dr. Ongley before considering surgery. He may be reached by calling

1-619-468-0055 Mondays or Tuesdays only from 8 to 5 PM PCT. It's been 25 years

since I first came down with RA. I give thanks for the support of a wonderful,

loving and caring husband and family. There were some very long periods of time

my husband had to assume all of my responsibilities as well as his own. He did

it graciously, and being a perfectionist he did it well. Our faith in God has

sustained us all of these years. What a consolation it has been to know He never

permits his children to suffer more than they can bear. For

years I waited expectantly hoping for a miracle of healing but God had another

plan. Because of His plan (and with the help of a wonderful lady in Australia,

Adlard) the website http://www.rheumatic.org came into being. Chris

designed the beautiful web page and we work together to keep it updated. Her

son, Steve, carries the page on the internet and has provided a mailing list

where patients can receive information, support and encouragement 24 hours of

the day. hosts this online support group. Now people all over the world

are learning there is hope for them as well. ETHEL SNOOKS, Plano, Texas

You can reach me at emsnooks@... Note: Ethel tested positive for

mycoplasma pneumoniae, mycoplasma salivarium and mycoplasma fermentans (n

Whitaker, M.D., wrote an article in his April 1995 " Health and Healing "

newsletter on the antibiotic therapy, featuring the story of Ethel Snooks'

success with the treatment.) *This book has been updated. It is called " The

Arthritis Breakthrough " or " The new Arthritis Breakthrough " .

---------------------------------

Please click here to go back to the Medical Histories page.

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imgList.length); for ( var i = 0; i mumpup2000 <leoniecent@...>

wrote:

hello, can someone point me to the AP testimonials website address ?

i've lost track of it.

thanks,

leonie

[Guest guest]

guess this didn't work. I will send you the e-mail address.

Eva

mumpup2000 <leoniecent@...> wrote:

hello, can someone point me to the AP testimonials website address ?

i've lost track of it.

thanks,

leonie

[Guest guest]

Leonie,

here we go. I found it on my bookmarks but couldn't remember exactly how to

get there but now I have.

on the web type in " Dr McPherson Brown " enter

when it comes up click on the 4th line " Antibiotics to treat Rheumatic

Diseases "

once that comes up there are some side bulletins, click on " Medical Histories "

this should do it, lots of people on there. hope this is what you are looking

for.

Eva

mumpup2000 <leoniecent@...> wrote:

hello, can someone point me to the AP testimonials website address ?

i've lost track of it.

thanks,

leonie

[Guest guest]

Hi group,

The testimonials page is part of rheumatic.org - just go to

http://rheumatic.org and look at the left hand menu where it says 'Medical

Histories'.

Chris.

> Leonie,

> here we go. I found it on my bookmarks but couldn't remember exactly how to

get there but now I have.

> on the web type in " Dr McPherson Brown " enter

> when it comes up click on the 4th line " Antibiotics to treat Rheumatic

Diseases "

> once that comes up there are some side bulletins, click on " Medical

Histories "

> this should do it, lots of people on there. hope this is what you are

looking for.

>

> Eva

>

> mumpup2000 <leoniecent@...> wrote:

> hello, can someone point me to the AP testimonials website address ?

> i've lost track of it.

> thanks,

> leonie