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. Thomas 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 Clark, 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, Chris 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. Chris 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@bellsouth.net

Note: Ethel tested positive for mycoplasma pneumoniae, mycoplasma salivarium and mycoplasma fermentans

(Julian 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".


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