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Hi, a friend of mine have this problem with limb muscle weakness and difficulties with swallowing. After seeing a doctor, he`s been diagnosed with Oculopharyngeal muscular dystrophy. Now, H heard about some antibiotic called doxycycline and I was wondering does anybody know if it`s some sort of a cure for OPMD?

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Hi, heard about doxycycline, but for now it`s just a hope for persons with OPMD. Doxycycline (which treat infections) has so far shown well in treating mice with diseases like OPMD. I read about researchers who treated mice with fewer abnormal clumps in muscle cells, and they lost fewer cells. But, translation from mice to humans (when it comes to studing drugs) is not so straightforward, and represents only a first step. But it sure gives some hope to persons with OPMD – perhaps doxycycline, or something linked to it, will show well in treating that disease.
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I was diagnosed with FSHD and scleroderma (symptoms began on the same day) five years ago.  I opted to be treated for scleroderma with doxycycline (150 mg/1X M-W-F).  Although going to physical therapy for eight months, there had been no improvement.  Two weeks after starting on doxycycline, my shoulder muscles began functioning.  In the last five years, I've had deterioration, but I can also do more than I could seven years ago -- before I was diagnosed.

At that time, I was also advised to seek a second opinion from the head of Rheumatology at our university medical center.  He told me that as my scleroderma improved from the antibiotic, so would my FSHD.  I asked why he said that and he told me that they had another patient with my diagnosis, and that person was seeing improvement with both diseases.

I do have neck involvement. I had been doing physical therapy for that for nearly a year when my rheumatologist prescribed oral clindamyacin for the scleroderma, a two week regimen.  I could not tolerate the oral clindamyacin (150 mg/2X), and quit after twelve days.  Two days later all the 'atrophied' ligaments and muscles in my neck were functioning.  Since then, I have been able to have IV clindamyacin once, and was able to take oral clindamyacin once other time.  Both times, I improved.  

It is difficult to find doctors who will prescribe clindamyacin. I've talked to doctors who know antibiotics have a positive effect on MD, but decline to prescribe them saying, "its not in the scope of my practice/what we do here."

From what I have read, mycoplasma bacteria is a factor in scleroderma, and has been found in the DNA of colon and breast cancers, and more than forty other diseases.  Low dose doxycycline is effective on mycoplasma. I think clindamyacin is as well.

There is no clincal trial of antibiotics for MD that I know of, nor do I believe that any pharmaceutical company sees established, generic antibiotics for MD as a profit center.  I just know this improvement has been my experience.

To be clear, I am not saying that antibiotics are a cure for MD, but that it does seem to slow down or mitigate the deterioration in a way that allows for slower deterioration or for mildly impaired muscles to recover function.  For those of us who do not look at MD as a research project, but who live with it 24/7 this is important and significant.

I have learned of one more (a third person) who has improved her MD with antibiotics, but I have yet to meet her.

Another option is to look for a Lyme literate doctor in your area, and see if they would advise/support comprehensive testing for Lyme bacteria and treating you. You might be able to be treated with the same medication and supplement support and get what you need that way. 

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