MARY, crossover syndrome/mixed connective tissue disease

From the time I was five or six years old I had chronic sinus and tonsillitis. My nose would be stopped up and at times a green mucous would drain from it. When I was seven, they did a T & A and I improved.

I was an extremely hyperactive child but always exhausted trying to keep up with the other children. I was never a child that just could bounce up and be ready to go. Living on a farm you can't say you are tired. If I ran a lot or tried to play hard my side would hurt, which now, as a doctor, I know was chronic appendicitis.

In 1957, when I was twelve years old, my PE teacher could not understand why I could not keep up with the other kids. When I complained of pain, she made me run laps and then take a shower and go out in the cold weather. I would be in pain from a few minutes to a couple of hours after PE. About the middle of December that year, after being forced to run those laps, shower and go out in the cold weather with a wet head, I caught a sore throat and the flu and got very, very sick. After a few days in bed, my parents finally took me to the doctor. He said I had caught the flu and prescribed penicillin. I spent the rest of that week in bed during which time my appendix ruptured. My temperature spiked at 104 degrees and I became delirious. I was given aspirin until six o'clock the next morning, at which time my parents called the doctor. He told them to bring me in immediately and he met us at the office. He took one look at me, put his hand on my stomach and said, "I think the appendix has ruptured. She needs emergency surgery. I'll call ahead and you take her to the hospital."

I was put in the hospital with a ruptured gangrenous appendix and I had a rash all over my body from the penicillin. (All my children are allergic to penicillin). Emergency surgery was performed. I was in the hospital about 10 days and scheduled to go home when I started running a low grade temperature. Doctors were hoping the next day it would be gone, but instead it jumped so high my parents were called to come in as they were going to have to take me back to surgery. My father flew in from Kansas City. My temperature shot up to 106 by the next morning - they gave me a 4 hour ice bath. The temperature came down to 104 and they took me to surgery telling my parents they didn't know if I would make it. The surgery revealed a large abscess. They didnt even bother to sew me up. I had four tubes for drainage. Nobody thought I would make it but I did.

The drainage was green and seemed unending. I stayed in the hospital for another 2-1/2 weeks and by this time weighed just 78 pounds. I don't know what antibiotic they gave me the second time around.

I missed one whole quarter of school trying to recoup. I was fed candy bars and high caloric foods to gain my weight back. I went back to school and appeared to be fine as long as I didnt push myself too hard. If I did, I would get a sore throat and get sick.

When I was a sophomore in college I started having recurring sore throats - every two weeks. I was on erythromycin on and off for about a year and a half. This situation seemed to go away. As long as I paced myself I was okay. Then I learned that if I started to get tired, if I would go to bed I could beat a sore throat. If I didn't go to bed I would get a sore throat, sinusitis and be sick for two weeks.

I met and married my husband, a Vietnam veteran. He was sick but nobody knew what was wrong with him. They discharged him with a disability. At first they thought he had an insulin tumor among other things. After about 5 years, with him going in and out of the hospitals being told he was a psychiatric patient, we diagnosed him as polymyositis - advanced case. His was an abnormal polymyositis. He would have severe muscle pain and spasms, and destruction of the muscle replaced by scar tissue.

He would have periods when he would get a little better but he never once went into remission. He would be able to walk awhile and then be in the wheelchair, then the bed. Then it got to be long periods in the wheel chair and then he was in the bed continually. The last bedridden spell lasted a year. He was fed with a straw - just skin and bones. He was put on massive doses of steroids intermittently. And we now know he had extreme case of candida. Then his blood sugar (as an insulin diabetic) would go crazy. He died of a heart attack about 5 years after the diagnosis of polymyositis.

Approximately 18 months to 2 years after he died I started experiencing pain up and down my spine - muscle spasm and pain to the point I wore a TENS unit and could not sleep. I had always been able to sleep. Now if I slept 15 minutes I did well. If I wore the TENS unit I got a little more sleep, so I wore it 24 hours a day. I would have intermittent depression and fatigue - not the fatigue that comes from taking care of children and working. But I kept pushing. I dropped my hospital practice and just saw patients in the office so I could have time with my children. I would sleep every Saturday and Sunday afternoon. My children were instructed to answer the phone and ask if it was a medical emergency. I had to sleep and could not take calls unless it was such an emergency.

I moved to a new location which would be better for my children. At this time I went through a personal problem that turned out to be the most stressful period of my life. It was during this time I developed cancer of the breast and within six weeks of finding it in the breast it was in the scapula and then the spine and then the pelvis. This was the most aggressive cancer I had ever seen. Since I had never seen a patient that was given conventional therapy survive more than three years (except for skin cancer), I went underground for treatment. Using herbs, a modified diet, supplements and homeopathics (1987-1990), we held it at bay but it didn't get any better. I made sure to get plenty of rest and watch my diet. I never had smoked or drank.

From 1988 to 1989, I was taking a very special product called Black Gold - a black powder - and working and functioning normally.. My appetite increased - I couldn't get enough to eat. I would be full but still hungry. No one knows what this product is. The plant in Michigan where it was produced burned to the ground. One of those unexplained fires. Fortunately I had a six month back stash. I took that 4 to 5 times a day for 2 years. I started taking the powder and then it was put in capsules. I took about 50 a day. As long as I took it I was okay, but if I missed a day I was in pain again. So I managed to keep things under control but never got remission.

When I ran out of the Black Gold it was like someone flipped a switch - my color went from a normal looking color to a pasty white I lost 25 pounds and, being in tremendous pain, I began allowing myself 1 codeine tablet in the morning, 1 in the afternoon and I cried myself to sleep at night in pain. I no longer walked around the clinic - patients were brought to me.

I needed herbal help and fast. Through a contact I started on herbs from outside the country. In six months I was almost clear of the cancers. In 9 months, remission was established and I have not had any signs of that since then. Just about the time the cancer went into total remission, my legs took on a coppery tone and the skin from the knees down became very hard like a rock. The skin on my face became drawn and taut and my hands were like claws. The jaw muscles started to deteriorate. To feel anything I had to slap or hit the leg. The muscles became extremely hard and had massive atrophy. The pain was so bad I preferred to crawl rather than walk. When I did walk, it was very stiffly. Then it moved into my hands and forearms. My legs itched so bad I would claw at them.

Again I went on herbs from out of the country but, because the supply was now limited, I never went into total remission. I lost about 25% of muscle tissue in my hips, thighs, and lower legs, and my feet were also affected. I now needed a smaller shoe size and cushions in the shoes. I functioned totally normally just so long as I didn't overdo it and stayed on a modified diet.

I then discovered I had chronic fatigue syndrome and candida. Again I took herbs for this. By this time my skin softened and the color came back almost to normal. With exercise the muscle tissue increased in size other than the bottoms of my feet. As long as I stayed on the herbs I was fine but just let me stop the herbs or have a little bit of stress and I was back to square one.

April, May & June of 1997, I tried the oral Minocin, 100 mg. Monday, Wednesday and Friday, but it did nothing for me so I stopped. I might as well have been drinking water.

In November of 1997, I fell down five or six steps and hurt my foot quite badly. I had to work a convention so I took homeopathics, creams and pain medicine, but I got too tired. I came down with the flu which went into bronchitis and borderline pneumonia. At that time the problem kicked off into a full fledge attack and flare. Once again, I had marked muscle wasting of the feet, legs and the thighs. It hit my lungs. I couldn't breathe deeply and the diaphragm of my lungs hurt. My whole rib cage would hurt. The paravertebral muscles started to hurt and I started having not only spasms but the feeling of 1,000 needle pricks. My sister saw me undressed and nearly went into shock at the amount of muscle wasting from the waist down I had since she last saw me 2-1/2 months prior. It scared her. I was in pain most of the time. I had itching intermittently in my legs, arms and shoulders. The legs were the worst.

In July of 1997, I started a formula called Unique Protection. It is supposed to be for any type of arthritis. It supposedly builds up the immune system and enhances the liver. I was in pain 24 hours a day at this time. I took 2-1/2 bottles. The pain and muscle wasting stopped so I thought I had found a cure.

In October of 1997, I started having sweats during the night - sometimes my head, sometimes the whole body. I couldn't sleep again - 15 minutes a night was all I could do. I resorted to sleeping pills because I had to work. As soon as that sleeping pill wore off I was wide awake. I thought it might be hormones. I had a lot of stiffness in my hands and had developed Raynauds back in November of 1996. My feet were worse than my hands. My nerves weren't good. I decided to start natural hormones. A little didn't work so I went higher - eventually taking massive doses. The night sweats got a little better but then the pain came back December 1st like a MACK truck. I then knew it was not hormonal. I remembered my husband used to soak the bed sweating with the polymyositis. There were times we changed the bed several times a day or night.

When the pain hit, plus the sweats, and remembering my husband, I knew IT was back. Each time it comes back the flare is more vengeful. This time there was not only pain, but it affected my mind. Normally I had a tremendous memory with almost perfect recall. Now there were times I couldn't remember anything - my mind would just go blank. I couldn't remember the names of people I had known for years. I thought I was losing my mind. This was not constant - only at times, but it scared me. I knew it wasn't Alzheimers, nor was it senility. I started taking chelation thinking that would help, but it didn't. I realized then it was the collagen disease affecting my brain. I went back on the Unique Protection which decreased the pain dramatically, slowed the atrophy dramatically, and improved my breathing which had become very difficult. (The pain in my lungs felt like I had a vice around my chest with a thousand needles in the lungs.)

The end of December 1997, I decided to start oral Minocin - 100 mg. twice a week and 300 mg. in an IV once a week. The first IV left me totally exhausted for the next three days. I experienced this same exhaustion after every IV for the next two months along with depression and frequent crying. Twice I tried to take two IVs a week but I couldn't function. I was in total exhaustion and my mind was not functioning. I could do nothing but sleep after getting an IV. I was getting frightened about being able to continue practicing medicine, so much so that I started thinking about checking out nursing home insurance. I dropped back to one IV a week along with 100 mg. of the oral antibiotic twice a week.

About the end of January 1998, the pain in my diaphragm was so tremendous I had to take a narcotic. I had taken narcotics when I had two C-sections and allowed myself codeine twice a day when I had the cancer.

I have office hours Monday through Wednesday and Friday. I take an IV on Wednesday evening which leaves me totally exhausted for the next three days - making it very difficult to see patients on Friday. I have no energy at all and spend a lot of time sleeping. The first eight weeks of IVs my appetite increased tremendously - I couldn't satisfy my hunger. I have gained 12 pounds.

The insatiable hunger finally slowed, and the fatigue level improved somewhat. I was thinking clearer and the pain was dramatically better. I was sleeping without medication 50% of the time. The skin on my legs was softening again, and the muscles became softer than they had been in 7 years. The itching diminished as well. At this time I increased the IV to 600 mg.

Lung capacity is diminished and the pain comes and goes, but as I get better there is less pain. My brain is functioning better. At times I have difficulty swallowing both food and drink. The muscles of the throat spasm and food hangs up in the esophagus. I have to cough it up and try again.

Since I felt I was improving, and nothing was different at the 600 mg. level, I decided to increase my IV to 900 mg. This time the exhaustion returned to the degree my arms felt like they weighed 1,000 pounds when I was laying down. I cried for 24 hours. When I fell asleep it was as if I was drugged. The depression was unbelievable and I'm still not over the depression a week later.

I am posting my story to date in the hope it will be an encouragement to others suffering in this manner. It will be updated from time to time.

Dr. Mary Doe


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