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Actinomycosis Support Group
A community of patients, family members and friends dedicated to dealing with Actinomycosis, together.
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02/15/2010 09:15 AM
bonbon62
Posts: 2
New Member

I am thrilled to have found this website. I was diagnosed with actinomycosis in the bone of my face. I have had some surgery and may be needing more. I am trying to find a doctor for a second opinion. It is very difficult to find a doctor that has treated this disease in the bone. Does anyone know of a doctor in the Oklahoma or Texas area? I am allergic to penicillin and the tetracycline. I would appreciate any information.

Post edited by: bonbon62, at: 02/15/2010 09:19 AM

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02/25/2010 05:29 PM  Top
Doctorblue
Doctorblue
 
Posts: 15
New Member

Bonbon62, thanks for posting, however, don't think we're going to be of much assistance. I live in the Washington, DC area in Northern Virginia. I had one heck of a time trying to find an infectious diseases doctor who even believes that people in developed nations still contract actinomycosis. It took me about a year to find him. And while he prescribed oral penicillin for me, he failed to take into account that once a patient's immune system is weakened by such illnesses, it's natural to contract what I call synergistic or accompanying infections of other pathogens that help the Actinomyces thrive. These include Candida, staph among other bacteria and fungi. From my research and personal experience, all pathogens need to be identified and treated together to eradicate the Actinomyces. As you know, actino in the bone is difficult to reach and therefore difficult to treat. I feel for you. I know the University of Virginia has an infectious diseases doctor familiar with cervicofacial actinomycosis, but that won't help unless you are willing to travel. I found that most of the doctors familiar with disease are research doctors who don't see patients and will only consult other doctors. The problem I had is that my doctors all felt they didn't need another doctor's help. They weren't open to changing their opinions about whether actino even exists in the U.S. or whether they should be concerned about treating the illness. That's why I became disabled in my middle ages. Who diagnosed you? Would that doctor be willing to consult with a research doctor known for his work with actino? If yes, I can at least pass along a research doctor contact for your doctor.

12/01/2011 04:46 PM  Top
bonbon62
Posts: 2
New Member

Thank you for your input. I took penicillin thru my veins for several months and then took an oral antibiotic for a year and I was allergic to both. They finally had to stop both of them. I am not on meds now and that is a great cpncern. I wonder if the disease is ravaging away at my body without my knowledge. I guess time will tell. I am thankful for this support group. Best regards and good health.

bonbon62

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