actinomycosis

Posted by kat1890 @kat1890, Jul 26, 2011

Does anyone know anything about this? Also, is there a doctor at Mayo-Jacksonville FL who can treat it? Daughter has been sick for 2 years and doctor after doctor has not been able to tell her what is wrong. One of the doctors in Atlanta mentioned this but did not say that this is what she is suffering from.

Interested in more discussions like this? Go to the Infectious Diseases group.

It’s a systemic mycoses( involvement of deep tissue and organs) caused by fungus-like bacteria. The clinical picture is a chronic suppurative and granulomatous disease, wooden or lumpy lesions, and multiple draining sinuses (cervicofacial, thoracic, abdominal). I assume a culture was performed which confirmed the docs’ diagnosis. Usually the drug of choice if culture identifies as Actinomyces israelii is Penicillin G or Tetracycline. As a clinical microbiologist please check with your physician for laboratory testing ( anaerobic culture ) if one has not been performed. Good luck!

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@uvea10

It’s a systemic mycoses( involvement of deep tissue and organs) caused by fungus-like bacteria. The clinical picture is a chronic suppurative and granulomatous disease, wooden or lumpy lesions, and multiple draining sinuses (cervicofacial, thoracic, abdominal). I assume a culture was performed which confirmed the docs’ diagnosis. Usually the drug of choice if culture identifies as Actinomyces israelii is Penicillin G or Tetracycline. As a clinical microbiologist please check with your physician for laboratory testing ( anaerobic culture ) if one has not been performed. Good luck!

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thank you for your reply. She has been to numerous doctors, most of whom tell her that it is all in her head. However, she has numerous weeping lesions, drainage from every opening in her body and has facial bone decay. She has seen an infectious disease doctor in Chattanooga whom seems to be the only one interested in her. She has her second appointment with him in 3 more weeks. Dr. Holland from Washington DC called her after he had reviewed some of her medical records and lab reports. He seemed to be concern that the cultures performed were dismissed and no treatment was begun. He stated that he would contact her doctors to determine their plan of treatment and to offer any assistance they needed. We are still waiting. In the meantime, she still has a fever, lots of pain, lots of drainage and no hope.

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@uvea10

It’s a systemic mycoses( involvement of deep tissue and organs) caused by fungus-like bacteria. The clinical picture is a chronic suppurative and granulomatous disease, wooden or lumpy lesions, and multiple draining sinuses (cervicofacial, thoracic, abdominal). I assume a culture was performed which confirmed the docs’ diagnosis. Usually the drug of choice if culture identifies as Actinomyces israelii is Penicillin G or Tetracycline. As a clinical microbiologist please check with your physician for laboratory testing ( anaerobic culture ) if one has not been performed. Good luck!

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Wow! I’m shocked to hear that the docs are dismissing her symptoms especially if she is experiencing drainage. Since you mentioned facial bone decay it sounds more like Cervicofacial actionomycosis. Does she have any infected teeth? What did her X-rays reveal? I guess I’m just shocked that you have not received better treatment for your daughter since actinomycosis can spread to any part of the body. Please ask to see all lab reports on your daughter to make sure cultures were performed. Although actionomycosi may be confused with bacterial infections the microbiologist shouldl know to look for the characteristic granules that can be seen in the pus or exudate from lesions which can help distinguish Actionomycces israelii along with the morphology of the colonies. Sorry to keep asking questions, I’m just very confused by the lack of concern you are receiving.

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@uvea10

It’s a systemic mycoses( involvement of deep tissue and organs) caused by fungus-like bacteria. The clinical picture is a chronic suppurative and granulomatous disease, wooden or lumpy lesions, and multiple draining sinuses (cervicofacial, thoracic, abdominal). I assume a culture was performed which confirmed the docs’ diagnosis. Usually the drug of choice if culture identifies as Actinomyces israelii is Penicillin G or Tetracycline. As a clinical microbiologist please check with your physician for laboratory testing ( anaerobic culture ) if one has not been performed. Good luck!

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I’m shocked too! I worked at the local hospital and I couldn’t believe that she was being dismissed with all the symptoms and drainage. The local doctors have dismissed it all saying that the lesions are from drug abuse, she is making herself this sick trying to get pain medications. Even though all the drug screens have been and will continue to be negative, the doctors all said the same thing. It’s a psychological illness – you just believe that you are this sick and your body is reacting to it. This is not a illness that all of sudden has come upon her. She has been seeking treatment for 4+ years. The last 9-14 months have been the worse. Her teeth are perfect, no gum disease at all. In fact, the oral surgeon pulled a tooth 10 days ago, he took bone sample(s) and tissue sample(s). He noted the granules on his record. He did not want to take it out, but the bone has wasted away. We have been waiting on the final lab results. She has seen a number of doctors here in Dalton, Atlanta, Villa Rica, Chattanooga, Calhoun, Nashville and also numerous er docs. This includes OB/GYN, internal medicine, general, dentists, ENT,, well, you get the picture. Our best and maybe last hope is this Dr. Holland from Washington and an infectious disease doctor in Chattanooga. If these two don’t or won’t do something, then I’m afraid she will just give up. She has all of her records, labs included from all the places she has been. She has done extensive research on this and is convinced that it has invaded her entire body and all organs. And she believes that it all came about from a cat scratch and the soil. The doctor in Atlanta changed his mind about a diagnosis. He didn’t think that it could be this bad and he wasn’t sure he could give a diagnosis of this since so many others had dismissed it. The infectious disease doctor in chattanooga told her to stop taking all antibiotics until he could see her in 4 weeks. X-rays are revealing massive bone loss. Thank you for questions. It’s nice to know that someone else cares.

REPLY
@uvea10

It’s a systemic mycoses( involvement of deep tissue and organs) caused by fungus-like bacteria. The clinical picture is a chronic suppurative and granulomatous disease, wooden or lumpy lesions, and multiple draining sinuses (cervicofacial, thoracic, abdominal). I assume a culture was performed which confirmed the docs’ diagnosis. Usually the drug of choice if culture identifies as Actinomyces israelii is Penicillin G or Tetracycline. As a clinical microbiologist please check with your physician for laboratory testing ( anaerobic culture ) if one has not been performed. Good luck!

Jump to this post

I’m shocked too! I worked at the local hospital and I couldn’t believe that she was being dismissed with all the symptoms and drainage. The local doctors have dismissed it all saying that the lesions are from drug abuse, she is making herself this sick trying to get pain medications. Even though all the drug screens have been and will continue to be negative, the doctors all said the same thing. It’s a psychological illness – you just believe that you are this sick and your body is reacting to it. This is not a illness that all of sudden has come upon her. She has been seeking treatment for 4+ years. The last 9-14 months have been the worse. Her teeth are perfect, no gum disease at all. In fact, the oral surgeon pulled a tooth 10 days ago, he took bone sample(s) and tissue sample(s). He noted the granules on his record. He did not want to take it out, but the bone has wasted away. We have been waiting on the final lab results. She has seen a number of doctors here in Dalton, Atlanta, Villa Rica, Chattanooga, Calhoun, Nashville and also numerous er docs. This includes OB/GYN, internal medicine, general, dentists, ENT,, well, you get the picture. Our best and maybe last hope is this Dr. Holland from Washington and an infectious disease doctor in Chattanooga. If these two don’t or won’t do something, then I’m afraid she will just give up. She has all of her records, labs included from all the places she has been. She has done extensive research on this and is convinced that it has invaded her entire body and all organs. And she believes that it all came about from a cat scratch and the soil. The doctor in Atlanta changed his mind about a diagnosis. He didn’t think that it could be this bad and he wasn’t sure he could give a diagnosis of this since so many others had dismissed it. The infectious disease doctor in chattanooga told her to stop taking all antibiotics until he could see her in 4 weeks. X-rays are revealing massive bone loss. Thank you for questions. It’s nice to know that someone else cares.

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I think I have actinomycosis since 1997 and my treatment is being blocked by an infectious disease doctor who thinks
I have a mental disorder which is not true. When the oral surgeon said I had osteomyelitis and needed intravenous
antibiotics the infectious disease doctor offered only Augmentin even though I told him that amoxicillian was no longer
effective. The infection has since moved to the brain area and I now feel irritation around my right eye. My PCP doctor
has given prescription for oral but cannot not authorize intravenous. Recieved rocephin intravenous from ENT treating ear infection for 2 weeks and my pain level went from 8.5 down 3 before infectious disease doctor blocked further treatment. Had a lumbar puncture when the needle relieved pressure my non-stop headache went away until the next morning. Too much data to write it all here.

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@rupert

I think I have actinomycosis since 1997 and my treatment is being blocked by an infectious disease doctor who thinks
I have a mental disorder which is not true. When the oral surgeon said I had osteomyelitis and needed intravenous
antibiotics the infectious disease doctor offered only Augmentin even though I told him that amoxicillian was no longer
effective. The infection has since moved to the brain area and I now feel irritation around my right eye. My PCP doctor
has given prescription for oral but cannot not authorize intravenous. Recieved rocephin intravenous from ENT treating ear infection for 2 weeks and my pain level went from 8.5 down 3 before infectious disease doctor blocked further treatment. Had a lumbar puncture when the needle relieved pressure my non-stop headache went away until the next morning. Too much data to write it all here.

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Welcome to Mayo Connect, a place for people to share their experiences regarding their health with others in similar situations. We are not medical practitioners, and cannot offer diagnosis, only support

Over 20 years is a long time to have an infection, you must have seen a lot of doctors and had a lot of tests during that time. It must be very frustrating to never get an answer. Have you been ill this entire time?

What led you to believe you have actinomycosis, which is very rare? Has it ever been suggested by one of your providers, or have you had tissue cultured to test for it?
Sue

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Yes I have seen a lot of doctors who seem to disbelieve me when I tell them my symptoms and yes I have been suffering for 24 years. My sternum has been so painful for the last year that I live 24-7 with an ice pack on it. When I received the rocephin treatment I was able to remove the ice pack for a few days. I had been having a urine stream problem and the rocephin cleared that up too but now the urine stream problem is coming back. Saw a urologist a couple days ago to see if he could do a biopsy on my prostrate but he refused this is the response I usually get, he did offer treatment for the urine stream issue which I am pursuing but I know it will not fix an infection. There was a time a few years ago when my prostrate hurt a lot now it hurts just a little Asked an ENT doctor if he could needle biopsy my right ear that has hurt since 2015 but he refused. He also did a sphenoidotomy in 2019 to allow sinuses to drain and he is the one who provided 2 weeks of rocephin treatment before he was shut down by the infectious disease doctor. He said after he talked to the infectious disease doctor that I was a hypochondriac and that the pain in my ear was now caused by TMJ not true I have been evaluated by a TMJ specialist who indicated I do not have a TMJ issue. My ENT doctor has helped me more than any other doctor with my condition and I think he wanted to help me more but he was over ruled by the infectious disease doctor.
Actinomycetes bacteria was cultured from an abscess on my jaw in October of 2020. A pathologist that examined bone samples wrote "The clinical diagnosis is osteomyelitis" and his description of what he saw matched a description of actinomycetes. I have had other biopsies that were negative but it is hard to culture when I have been off and on oral antibiotics.
My previous PCP has actinomycosis of mandible in his records but it is actually the right maxilla and he would only prescribe Augmentin which was worthless until I added another antibiotic on my own to enhance it after researching online which combinations were effective against actinomycosis. In some cases I had to back down the dosages because of diarrhea. I did not want to get C-diff and as a result was able to push the infection back some but not cure it.
Last year I got the last of my hernia mesh removed because from research I had found that
the mesh created an environment for a biofilm to exist making it almost impossible to get rid of an infection with antibiotics. Wished I had known at that time what type of bacteria I was dealing with
because I would have asked for longer culture time on the material that was removed because they typically only culture 2-5 days and actinomycetes requires a minimum of 10 days and 20 days is preferred because of the slow growth rate. I have gone back to the surgeon that removed the
last of the hernia meshes to see if she could do a biopsy in the area where the mesh was removed that is still sore but she said she could not justify it. She did order a MRI on my sternum but could
not identify a target to biopsy.
There are certain antibiotics that are known to not be effective against actinomycosis and from
my personal experiences they do not help with my condition either.
This last year I have experienced pain in the following areas. Right maxilla has felt like it was on fire when I have stopped taking oral antibiotics. Right ear hurts non-stop and left ear hurts less. I don't think there is a problem with left ear the ENT doctor indicated that pain in the right ear can
cause the left ear to hurt. Sternum hurts non-stop with varying pain levels. Right and left groin
areas hurt with more pain on right side which seems to be spreading more to the right. Lymph
nodes under arm pits hurt most of the time. There is a spot on the right side of my abdominal
area that I think is a lymph node that is painful when it is swollen but the swelling comes and goes.
Pelvis sometimes hurts like something is attacking the bone both sides. About 6 months ago
the brain area on the right side started hurting non-stop along with area around right eye. I think the headache pain is caused by pressure. The headache pain went away until the next day after I had a lumbar puncture done. Acute attacks happen periodically where jaw, throat and sternum hurt so much all I can do is lay down and wait for it to pass. The attacks can last from a couple of minutes to a half hour.
I have not been able to see another infectious disease doctor or a neurologist in Idaho because the infectious disease doctor I was seeing put "mental disorder" in my file and places I had a referral for refused to see me based on my medical record. According to my advocate that entry has recently been removed but I need to verify.
My background I used to repair refrigerator sized super computers and design circuit boards all self taught. A few years ago I was offered a job repairing MRI's but had to turn it down because of
my health. I have spent more than 1000 hours researching actinomycosis and think I know more about it than most doctors I have seen. I sent this twice not sure first reply went through.

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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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@sueinmn

Welcome to Mayo Connect, a place for people to share their experiences regarding their health with others in similar situations. We are not medical practitioners, and cannot offer diagnosis, only support

Over 20 years is a long time to have an infection, you must have seen a lot of doctors and had a lot of tests during that time. It must be very frustrating to never get an answer. Have you been ill this entire time?

What led you to believe you have actinomycosis, which is very rare? Has it ever been suggested by one of your providers, or have you had tissue cultured to test for it?
Sue

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Actually about 6 years ago I went to ER to your facility in Phoenix for some of the symptoms.
I have forgotten what they were then as the disease has progressed it has affected different parts
of the body. I have notes I have written through the years of how I was feeling at different times.
Is there a number I can call to get a copy of my records?
Thank You,
Bart

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@rupert

Actually about 6 years ago I went to ER to your facility in Phoenix for some of the symptoms.
I have forgotten what they were then as the disease has progressed it has affected different parts
of the body. I have notes I have written through the years of how I was feeling at different times.
Is there a number I can call to get a copy of my records?
Thank You,
Bart

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Hello Bart, You can get the information you need for requesting your records here: mayoclinic.org/patient-visitor-guide/arizona/resources

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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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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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