During the past year I've saved the obituaries of several prominent people, not to be morbid, but to illustrate a point. These people all had money and prestige. They could obtain the best medical care available anywhere. They had another thing in common - all died in their 60's of complications of rheumatoid arthritis. I hope to avoid that. I'm not afraid to die, but I'd like to avoid long years of suffering needlessly from RA.
I'm a third generation Southern Californian, raised near the beach and used to an active life. Our greatest joy is a day at the beach with our children and grandchildren. I had no concept of how this disease was going to impact my life when I was diagnosed in November 1994. It seemed to strike very suddenly after a mild flu. My hands and feet began to swell. Even my liver enzymes were elevated. They asked if I drank much alcohol. Hardly ever. Soon RA crept into almost every joint in my body - even my jaws. The pain in my knees and shoulders was excruciating. My illness transitioned me from being vertical to horizontal.
Our internist's sad eyes told the story. He said most people get somewhat better eventually. He referred me to Dr. Powell, a rheumatologist, who he said was a good man and brilliant. Because my liver was affected they only gave me NSAIDS. Before the RA I had been exhausted, with dry hair and dry eyes, and my hands were sensitive to cold. Now my rheumatoid factor climbed to 468 and my SED rate 100+. I've always been healthy, but when I do get sick, I often get really sick. This was the worst. I know my husband was frightened for both of us. He cared for my every need tenderly - my heart goes out to all who don't have that support. Our relationship became totally platonic, but he never treated me as less of a wife and lover.
One night my hand swelled up like a baseball. I wound up in ER where the doctor gave me two very strong shots of an antibiotic because he thought I might have a joint infection. When I awoke a few hours later, I had hardly any pain. I couldn't forget that an antibiotic brought relief. Did I have an infection? "No, it must have released endorphins," Dr. Powell said. I just 'thought' I was better? That day my devotional was Jeremiah 31:4. "I will raise you up, you will be rebuilt, you will go out once more and dance with your tambourines". I do have a tambourine that I've had since I was about three years old. My husband said, "See, God will not abandon you." I cried, I hurt, but I didn't give up looking for God's help. My faith was not in the doctors alone.
Around bedtime January 2, 1995, I was in such pain I could not go to sleep, so I picked up the newspaper to read. On the inside of the front page was an article about a government study using antibiotics for RA. I began to drag this clipping to doctors appointments. Dr. Powell said he had 'better medicine' and smiled. He later told me, "You've got RA and you're not going to get rid of it." It was like a slap.
My internist and the liver doctor are interested, a little. They said if an antibiotic would work, it would be better than the side effects of the drugs I am headed for as soon as my liver permits. I called U.C.L.A. Medical Center and made an appointment with Dr. Harold Paulus -he knows about the MIRA study results published in early January 1995. I can't get in until March.
Mid January 1995 - I'm going to have to quit driving. I'm a menace - my hands and shoulders are so weak and sore and I can't turn my neck. But I stop at the library and get several big books on RA and one little book I hardly noticed. I read the big books - the future looks awful in all of them. Deal with the pain, keep moving, toxic drugs and surgery. The night before the library books go back, I can hardly bend down to reach in the bag. My hands are so stiff I can only grasp the little book, "The Road Back". After ten minutes I tell my husband, "This tells us all about that antibiotic therapy." He takes the book, reads it and calls the National Hospital the next day. They have been using antibiotics for 30 years and helping thousands of RA victims. They have three referrals in Southern California and we choose Dr. Al Franco in Riverside, only an hour from our home. Peru would not have been too far!
I go to my appointment with Dr. Powell and he said I must start Plaquenil. I said to him, "I've asked you about antibiotics during the last three visits." He seems irritated. He asks if I've read something by Dr. Brown. "Yes," I say. Well, Dr. Powell was trained at George Washington Medical School. Dr. Brown was his Dean of Medicine. He knows all about antibiotics for RA. They thought Dr. Brown was a quack and laughed at him. But, maybe he was on to something - and if I want antibiotics he will give them to me. By now I'm so bad I can't even crawl up on the table without help. Why did he wait so long? I was asking for an approved treatment that was less toxic, and that could have been started immediately when I requested. Dr. Powell had been offering toxic chemicals that can do as much damage as the disease.
So I am in the hands of a brilliant doctor who is familiar with the treatment I am interested in, and he wouldn't even answer my questions. He just smiled and said he had better medicine. Better for him or me? I felt so betrayed.
In my newspaper clipping on the MIRA study, it said 50% of patients on Minocin were 50% better in 48 weeks. However, the rest of the people treated with it were at least 25% better, and they had RA an average of eight years. So where will you be next year if you don't try antibiotics? Will you be any better? Are you going to trust a doctor that tells you the same thing I was told?
February 1995 - We went to meet Dr. Franco. We hoped it wouldn't be a dead end. We liked him immediately. He was kind but he didn't give false hope. He said my immune system was 54 and maybe it would work, maybe it wouldn't. A rigorous exam and lots of blood work. No medication until the results are in about a month.
We decided to go to Dr. Paulus at U.C.L.A. since we had an appointment. He was very thorough and offered to put me on Minocin. However, as we were leaving, he mentioned that he hadn't told any of his patients about Minocin - but he had one woman on another antibiotic. She went to a dermatologist for acne and after that doctor put her on tetracycline she no longer had RA! Then why not offer it to some of his patients who might not be doing well on other drugs? I hear now he is doing some Minocin treatment. I feel especially sorry that no one at the large children's hospital in our area is informing parents of this approach. The toxic medications can do great damage to children. We think we are very fortunate to have Dr. Franco around. He doesn't offer miracles, but he does offer hope.
When we returned to Dr. Franco, I didn't test positive for anything like strep or mycoplasma, but my rheumatoid factor was 468 and my SED rate 100+. I went home with a prescription for Minocin to be taken 100 mg. 2 times a day - Monday, Wednesday and Friday. The first month I started to sleep better, and the pain was less in my jaws. That was mid March 1995. By June I was able to help our daughter a little with her wedding and started driving again. I met her at the florist and went to see her dress. I got a new hair cut. Dr. Franco lets me take 7 mg. of prednisone on the big day. I never had any before - bless that terrible drug.
In July, Dr. Franco is going abroad. He takes me off Relafin (NSAID) and I feel more comfortable on 3-1/2 mg. of prednisone a day. I'm able to go to the beach and sit under the umbrella a few times and the nodes on my elbows get smaller. I can reach up to adjust the shower. My hair looks less dry. My rheumatoid factor and SED rate drop a bit. I still hurt a lot, and have many rough days, but I am improved. I would probably feel better on the Plaquenil, but would the disease be lessening at all?
I actually spoke with a woman from the Arthritis Foundation who was very interested in this treatment personally. She agreed rheumatologists don't like Minocin because it doesn't require a specialist. It is certainly preferable to find a specialist, I feel. My own internist now feels my progress is 'remarkable' and he will certainly inform his own patients about it. He would like to try it on the next patient like me that he encounters. That probably makes the rheumatologists very uncomfortable. Perhaps much of the case load would never reach them with a safer more effective medication. I don't care what decisions people make about their medication, but they should have the right to know about this option. Recently a friend gave up on antibiotics after a few slow months. She changed doctors, started methotrexate and did really well for four months. Then she declined rapidly. Her doctor says she needs to increase the methotrexate. When she asked about her rheumatoid factor and SED rate, he said they had no bearing on his treatment.
A lot of people suggested home remedies. I started informing myself about nutrition when my kids were babies. I raised them with Adele Davis in one hand and a food processor in the other. We never ate 'fast food' at our house. We grew or bought organic produce - even raised livestock. Our kids were in 4-H. I doubt if home remedies or nutrition would have been enough to halt my illness alone. When I was stable enough this fall, I went to a clinic near San Diego where further testing revealed I'm extremely sensitive to gluten in grains. Now the only grains I eat are brown rice and corn products. I also tested positive for intestinal parasites (probably from all our times in Mexico). The clindamycin IVs I started in January of 1996, and the clindamycin shots I take now have helped that problem. Right now I'm not eating any fruit or sugars, and in a short time I'm going to take a drug similar to flagyl to try to rid myself of the parasites. Dr. Franco has been supportive of this.
Some flashbacks: I remember a few months after starting Minocin being in a car and looking down at my hands and the color was normal - not sickly mottled purple.
January 1996 - I got a big boost when I began a series of clindamycin IVs every fifth week. A little achy by the end of a week, but then progress came quickly. Now I take a shot every other week. After I was on Minocin a month, and did well, we increased to taking it seven days a week. Now I do four days a week. I'm down to 1 mg. of prednisone every other day. I'd quit altogether but I get really tired. I know I may be on this the rest of my life.
Dr. Franco is starting to say I won't always have symptoms. I have very little damage. My right ankle turns in a little - the arthritic 'roll' - I can spot it on others. My right fingers swan a bit, but I can do almost everything okay. I can't get down on my hands and knees - the front of my knees are still a bit stiff. Hopefully that will improve. It's very important with three grandchildren. I can walk a couple of blocks with no problem, then I need to rest my knees about 5 minutes. I have lots of pretty shoes I couldn't bear to give away. Maybe I'll have to sometime. I can wear a low heel now.
January 1997 - We went to a fancy New Year's dinner dance at my husband's new golf club. I looked normal and felt glamorous. People don't notice I have any physical problem. I'm fortunate I was able to begin treatment after only four months of RA. It hit me suddenly, and I have responded to treatment well. They say if your disease began slowly it may leave more slowly, but you will be getting better instead of worse.
This is not the first medical challenge I've been involved in. A few years ago the Edison company put a power station behind our son's home while his wife was pregnant. One of their neighbors, an engineer, helped me become informed about the possible health impact of electro-magnetic radiation, especially on children. It was a five year process, but the power station closed. It taught me prayer, perseverance and personal inquiry can lead to results. My Dad, a medical attorney, was a great help. He is 80 and still practices.
I'm not intimidated or ready to take a doctor as the final word on something. I think it is very important to follow their instructions when they are treating you, but you don't have to quit searching. They can't keep up with everything. We are finding many doctors here are interested in this therapy and grateful for well written valid information. I know several people here whose own doctors are now giving them appropriate antibiotics for various rheumatoid diseases, but I'm glad I was able to go to a doctor with a background in this treatment. Intuition and experience can be critical to success - so you don't give up. I hope this will encourage you on your journey to better health, and I do believe God can help us all. After all, do you think all of this was just coincidence?
Linda Primrose - February 1997
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