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.

@rupert

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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Maybe go back to one of the docs that diagnosed osteomyelitis for treatment?
Understand that they will want to start with Augmentin or Penicillin unless they have done a culture to identify a specific bacteria.

Also, often when treating infections, there is a treatment protocol called "step up" where they try drugs in a certain order, and if you refuse what they offer, they may decide not to treat you. This is to keep the strongest drugs "in reserve" for the most resistant infections, as superbugs due to indiscriminately used antibiotics are getting tougher all the time.

There may also be something else in your health history that makes the reluctant to give it such as reaction to another antibiotic, kidney or liver issues, or diabetes or something else.

SO what is the bottom line? Getting care is a two-way street. If you want to beat this thing, whatever it is, the doctors expect you to work with them – sometimes that means starting with their recommended treatment .and moving on if it doesn't work. And not going out on your own and adding other drugs to the regimen…

Are you willing to go back to one of the original doctor s who diagnosed that and try.?
Wouldn't that be better than continuing to suffer year after year?

Sue

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@sueinmn

Maybe go back to one of the docs that diagnosed osteomyelitis for treatment?
Understand that they will want to start with Augmentin or Penicillin unless they have done a culture to identify a specific bacteria.

Also, often when treating infections, there is a treatment protocol called "step up" where they try drugs in a certain order, and if you refuse what they offer, they may decide not to treat you. This is to keep the strongest drugs "in reserve" for the most resistant infections, as superbugs due to indiscriminately used antibiotics are getting tougher all the time.

There may also be something else in your health history that makes the reluctant to give it such as reaction to another antibiotic, kidney or liver issues, or diabetes or something else.

SO what is the bottom line? Getting care is a two-way street. If you want to beat this thing, whatever it is, the doctors expect you to work with them – sometimes that means starting with their recommended treatment .and moving on if it doesn't work. And not going out on your own and adding other drugs to the regimen…

Are you willing to go back to one of the original doctor s who diagnosed that and try.?
Wouldn't that be better than continuing to suffer year after year?

Sue

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Sue,
The doctor you are communicating with is not being truthful with you. He has indicated more than once I can not see another doctor where he works. I have enough information to have him charged with a felony. Another doctor I talked to says he should be charged criminally for what he has done to me. Actinomycetes bacteria has been cultered and symptoms match. I was getting better being treated with ceftriaxone by my ENT doctor 2 months ago before the bad doctor stopped treatment and chewed on my ENT doctor. I have spent more than a 1000 hours
researching actinomycosis and I know that is what I have. My PCP has actinomycosis written in
my health records and has told me if he would sign for IV antibiotic treatment he could but that
requires an infectious disease doctor to sign.

REPLY
@rupert

Sue,
The doctor you are communicating with is not being truthful with you. He has indicated more than once I can not see another doctor where he works. I have enough information to have him charged with a felony. Another doctor I talked to says he should be charged criminally for what he has done to me. Actinomycetes bacteria has been cultered and symptoms match. I was getting better being treated with ceftriaxone by my ENT doctor 2 months ago before the bad doctor stopped treatment and chewed on my ENT doctor. I have spent more than a 1000 hours
researching actinomycosis and I know that is what I have. My PCP has actinomycosis written in
my health records and has told me if he would sign for IV antibiotic treatment he could but that
requires an infectious disease doctor to sign.

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I am confused when you say "The doctor you are communicating with is not being truthful with you.." I haven't been in contact with any docs about your illness. I was just speaking from my own experience with medication protocols.

I guess at this point your choices to secure treatment are to find a completely new provider in a different practice and start the diagnostic process over again, or go back to the original provider, and start the therapy he recommends, stepping it up when it doesn't work.

Have you considered changing physicians and provider groups?

REPLY
@sueinmn

I am confused when you say "The doctor you are communicating with is not being truthful with you.." I haven't been in contact with any docs about your illness. I was just speaking from my own experience with medication protocols.

I guess at this point your choices to secure treatment are to find a completely new provider in a different practice and start the diagnostic process over again, or go back to the original provider, and start the therapy he recommends, stepping it up when it doesn't work.

Have you considered changing physicians and provider groups?

Jump to this post

Dear Sue,
Whoever told you I could go back to same doctor for help is lieing. I have text from bad doctor
indicating he does not want me to see any doctor at UofU. He has tried to pin "mental disorder" on me which my PCP laughs at. Unfortuneatley can't go to St Lukes in Boise he has muddied the waters there too according to my advocate. I don't have a mental disorder but I am sure he is
still promoting that if you called him.

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@rupert

Dear Sue,
Whoever told you I could go back to same doctor for help is lieing. I have text from bad doctor
indicating he does not want me to see any doctor at UofU. He has tried to pin "mental disorder" on me which my PCP laughs at. Unfortuneatley can't go to St Lukes in Boise he has muddied the waters there too according to my advocate. I don't have a mental disorder but I am sure he is
still promoting that if you called him.

Jump to this post

Hi Rupert, I see that you have been getting a lot of support and suggestions from a fellow patient and member of this online patient community, Mayo Clinic Connect.

Mayo Clinic Connect is an online community where patients and caregivers share their experiences, find support and exchange information with each other. We are not medical professionals. And members certainly do not have access to patient records and we do not call doctors on your behalf.

Should you wish to consult with a medical professional at Mayo Clinic, you can self-refer by contacting the Appointment Request office. Click this link to get the contact information: https://www.mayoclinic.org/appointments

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Because the bad doctor put "mental disorder" in my records all of the infectious disease doctors I had a referral for refused to see me also neurologist refused to see me for same reason.

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Has anyone ever dealt with Actinomyces type of infection and if so, how long did it take to be completely cured without any reoccurring infections.

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@baranups401

Has anyone ever dealt with Actinomyces type of infection and if so, how long did it take to be completely cured without any reoccurring infections.

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Hello @baranups401 and welcome to Mayo Clinic Connect. I actually found a previous discussion on this topic so you will notice I have moved your post.

Do you personally have this type of infection? If so, how long have you had it and have you sought care?

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I do have this and am struggling with it again. I had a PICC line in to treat it with 24/7 antibiotics and once the 8 weeks was up, they removed the line. I got it again in the same wound and am just defeated.

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