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kat1890 (@kat1890)

actinomycosis

Infectious Diseases | Last Active: Apr 30 8:48am | Replies (21)

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@sueinmn

That's a very long and comprehensive description of what you have been dealing with.

After reading about actinomycosis briefly, I can see that it is very rare, the estimate is that it affects around 1000 people in the US. I am not surprised doctors are unfamiliar with it. What I still don't understand is how you concluded that is your infection, as many other organisms can cause osreomyelitis, and the bone biopsy didn't identify typical actinomycosis factors.

I suggest that your best option is to find a large multi-disciplinary medical center where they can evaluate you.
Sue

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Replies to "That's a very long and comprehensive description of what you have been dealing with. After reading..."

Went to University of Utah facility that is where infectious disease doctor resides that has blocked my treatment he also would not allow me to see another doctor there without signing some psychiatric form where they can search my home. I use marijauna for the pain. It is hard just to find a lab that can culture actinomycetes. Mycoplasmas was another possibiliy but culture came back negative. Antibiotics that are known to not work match, requires long term antibiotics treatment to
just to push symptoms back a little. Rocephin is known to be effective and it is. I have MRI's that
show lesions in brain that were not there a year ago and there are clusters that I believe may form
an abscess later that have been looked at as ischemic disease but lesions from both look the same. The bottom line 3 doctors indicated osteomyelitis which standard treatment is intravenous
antibiotics and the infectious disease refused to properly treat and only offered Augmentin even though I told him that amoxicillin did not help anymore. The bug had built up a resistance to
amoxicillin after 20 plus years. Doctors won't do cultures I ask for. Starting to think I need to go to another country for treatment.

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