By: Drs. Stan and Doris Lefkowitz (credentials below)
Because of an unusual series of events, we have found that the prescription drug Cardizem ameliorates and possibly reverses certain symptoms associated with FSH dystrophy. We do not know if it affects any of the other types of dystrophy, nor do we know if it will have the same effect in other FSHD patients.
The following is the schedule, which we are using:
Everyone started at 15 mg a day of Cardizem (diltiazem) 2X a day for 3-4 days. Not one of the 6 patients on the drug, so far, has had any trouble, but the prescribing doctor likes to play it safe by starting with a very low dose.
At any rate, after a few days, the dosage was increased to 15 mg 3X day. After that, it was 30 mg 2X a day. Finally, it was increased to 30mg 3X a day and have stayed at that dosage. No one seemed to notice any differences in energy until 45 or 60 mg/day. Also, we found that if they took calcium supplements or had a lot of calcium in their diets, the effect of the Cardizem was diminished or negated.
After all of us had seen some success with the Cardizem, everyone added nutritional supplements to their diet. In particular, they added Ambrotose and Empact. The latter contains creatine that has been reported in several recent scientific papers to help people with neuromuscular disease. When either the Cardizem or the nutritional supplements were used alone, the progress was slow. However, when the Cardizem and nutritional supplements were taken together, improvement was rapid. Everyone using the combination of Cardizem and nutritional supplements said that they felt better than when they were on the Cardizem alone or the nutritional supplements alone.
Both my brother and our son are now constantly "going." The main statement we hear is that with the nutritional supplement added they have much more energy and that changes are occurring more rapidly. Concerning the nutritional supplements, a mixture of equal amounts of Ambrotose and Empact was made. Of this mixture, 2 tablespoons 2-3 times a day are taken.
There was a study published in 1993, which utilized dystrophic hamsters. In this study 3 different calcium channel blockers were employed. Of the three, only Cardizem worked. Animals, which were given Cardizem, did as well as normal control animals. Although this study lends some support to the use of Cardizem, it should be noted that this study was done with a model which more closely resembles Duchenne muscular dystrophy.
We hope that this information will be of use. Please contact us, if you have any other questions.
Drs. Stan and Doris Lefkowitz
Stanley S. Lefkowitz, PhD
Professor of Microbiology and Immunology
Texas Tech School Medicine
Lubbock TX 79430
Dr. Stanley Lefkowitz received his B.S. from the University of Miami and his Ph.D. from the University of Maryland in 1960. He then spent the next 3 years on a NIH postdoctoral fellowship at Variety Childrens Research Foundation in Miami in viral oncology. He accepted the position of Assistant Professor of Microbiology at the Medical College of Georgia. After 7 years and promotion to Associate Professor, he moved to Lubbock TX in 1972 and became one of the first faculty of the Texas Tech School of Medicine. He was subsequently promoted to professor. He is actively involved in research and has over 180 scientific abstracts and publications. During his sojourn at Texas Tech, he held a number of major administrative appointments including Associate Dean of the Graduate School, Coordinator of Research, and Acting Chairman of the Department of Microbiology and Immunology. In addition to the above he is a Fellow of the American Academy of Microbiology and is a Diplomate of the American Academy of Microbiology and is Board Certified in Clinical Virology. He is the virology consultant for Stedmans Medical Dictionary. He is currently on leave from Texas Tech School of Medicine.
Doris L. Lefkowitz PhD
Associate Clinical Professor of Microbiology
University of South Florida
College of Medicine
Tampa, Fl 33612-4799
Dr. Doris Lefkowitz received her B.S. degree from the University of Miami, Florida. She taught science and mathematics in high schools in Miami and Atlanta. She received a National Science Foundation Grant to pursue graduate studies in mathematics. After 1 year of study, she realized that microbiology was more dynamic and exciting. At this juncture, she switched her major to medical microbiology. Both her M.S. degree and her Ph.D. were from Texas Tech School of Medicine, the latter of which was awarded in 1986. Shortly thereafter she was appointed Assistant Professor of Biological Sciences at Texas Tech University. She has received numerous awards including the New Faculty Award by the ex-Students Association and Professor of the Year in 1996. Because of the latter she was honored with a brick carrying her name in the Arts and Sciences Garden. She was also appointed a charter member of the Texas Tech Teaching Academy, an honor for all outstanding teachers. She has been a reviewer for several immunology textbooks and has been invited to present her research at national and international meetings. To her credit, she has over 100 scientific abstracts and publications. She is also the immunology consultant for Stedmans Medical Dictionary.
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