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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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12/30/2008 01:46 AM

Alon
Alon
 
Posts: 1802
Admin
I'm an Advocate

Hi ,

I'm Alon, nice to meet you all Wink

I'm in charge of all the technical stuff around the site and the support group.

If you have any problem, want to ask a technical question or would like to suggest a new addition to the Actinomycosis group - please contact me (via PM).

I hope to CU here a lot.

Sincerely,

Alon

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06/03/2009 06:29 PM  Top

Kissmebaby
KissmebabyPosts: 198
Member

Alon

Are you diagnosed with Actinomycosis? There aren't many of us are there?


07/01/2009 04:35 PM  Top

Doctorblue
Doctorblue
 
Posts: 15
New Member

Kissmebaby, This is Doctorblue. Yes, I have an official diagnosis of actinomycosis based upon my a case I put together and presented to an infectious diseases doctor using the test results amassed from seeing numerous non-helpful specialists and my research. Now, I just need to find a physician who has the capacity to provide me with the intravenous treatment treatment protocol for the disease calls for. It's a long story.

Anyway, at my request, Roy and Alon put this forum together so that I might meet others afflicted with actinomycosis. We are said to be a rare bird. That makes me feel special in a sordid sort of way.


Previous discussions I participated in:
Actinomycosis
Hi! Seeking All The Help You Can Give...

08/02/2009 08:33 AM  Top

Kissmebaby
KissmebabyPosts: 198
Member

There you are!!!!!!!!!!!!!

I know you posted a couple years ago. WHAT IT UP?

I am TOTALLY DR. BLUE. I have been outcast. My doctor system of 22 years has not only failed me but refuses to see me anymore. I have to start over.

How did you contract Actinomycosis? I have Triglycerides, Eosinophils and now Lymphocytes OFF the charts. I have swabs with: positive for 'flora growth' and 'active/reactive inflammatory changes.' DAH! No one here seems to know what Actinomycosis is. After they all looked it up LMAO, 1/2 said I was crazy (and they didn't want to see me again) and the other 1/2 (scientifically) said if it were, YOU WOULD BE DEAD ALREADY. Lovely.


08/02/2009 08:42 AM  Top

Kissmebaby
KissmebabyPosts: 198
Member

I can't believe you finally got this. Isn't Actinomycosis a 'piece of work?' What a bummer. I got mine from 100+ sandfly bites in Belize 11/05 (who went to emergency for bug bites-DUH-isn't hindsite wonderful). Then, in 05/07 I had a bad dental procedure injury to the jaw (I think that is when it crossed planes-only YOU would understand that). Now, it is in my body cavity and lungs. My ENT has worked on my sinuses great...now it is worse everywhere else.

Hay, have you heard what makes it worse. I've heard: sugar, estrogen, soy...steroids? I have been on steroid treatment forever because of the sinuses.


08/02/2009 10:25 AM  Top

Doctorblue
Doctorblue
 
Posts: 15
New Member

Kissmebaby, Your email provides me so much reassurance. It's nearly impossible to find anyone or any doctor in the U.S. familiar with actinomycosis in order to get treatment.

How do you know you got it from sandfly bites? I have bug bite scars all around my ankles and suspected this was at least a partial cause of my troubles but never could confirm.

From the literature, I found that you get co-infections from actinomycosis, particularly candida albicans and viral infections. The same thing happens with other illnesses like lyme because once the immune system becomes compromised, you become more susceptible to catching bugs. I know candida, a fungal infection that also infects the gut and lungs, thrives on sugar, estrogen, steroids...not sure about soy. It seems all the things doctors prescribed to try to quell the symptoms of idiopathic ailments you complained of were actually causing you to get worse. It's no wonder now that they don't or won't acknowledge that gut fungal infections even exist -- at least the horde of doctors I saw.

I'm having difficulty finding an infectious diseases doctor familiar with abdominal actinomycosis. Do you have someone I might contact even if he is far away?


Previous discussions I participated in:
Actinomycosis
Hi! Seeking All The Help You Can Give...

08/02/2009 10:28 AM  Top

Doctorblue
Doctorblue
 
Posts: 15
New Member

Kissmebaby, Alon is MDJunction's technical support guy. He is not a member of this support forum per se.

Previous discussions I participated in:
Actinomycosis
Hi! Seeking All The Help You Can Give...

08/02/2009 12:08 PM  Top

Kissmebaby
KissmebabyPosts: 198
Member

So far no luck with a doctor. My Homeopathic is working on a contact here in Orange County, CA. He says a friend of his barely picked-up a dead bird by the wing to throw away. His insurance only covered a tiny hospital here: Chapman Medical Center, Chapman Ave, Orange (been there many times). He said they called in an infectious disease and the next thing you know, he is in the hospital for a month. Sounds like exactly what we need.
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