Re: Penny - actinomycosis

[Guest guest]

, although I suspect this is a more common bug than realized, I only know a few people personally who have gotten the dx (sample needs special handling). The people I know who've beaten it are few, and their treatment was prolonged i.v. abx (multiple therapy) based on constant culturing under the supervision of an infectious disease doc. One of these patients is a doctor herself. She even managed to keep her teeth, with additional work, which is pretty astounding. She's been well for years now, but still only considers herself in remission. Another friend's actino problem has gotten so bad, that she's now trying to find surgeons who specialize in facial & jaw reconstruction before going after it again because her docs have told her that her face will most likely be badly deformed if they surgically remove the affected areas. She doesn't have a lot of jaw or teeth left at this point, primarily due to too much

surgery and no abx coverage by NICO docs who caused the actino to spread and create more fistulas, but surgery is still necessary as she's been on constant abx, both pill and i.v. The abx holds the bugs at bay but are not curing her. Of course, different docs have different surgical approaches and techniques, and disagree on how successful the outcome might be so she's still trying to decide which direction to take. If she hadn't had all the NICO surgery, and had just had her root canaled teeth and implant removed, she would probably not be in such a serious predicament right now. She would probably still be sick, but wouldn't be worrying about her face collapsing on top of everything else. Bad surgerical treatment or even trauma can cause the disease to progress more rapidly, whereas left alone, the body can wall the bugs off to some degree. I think the result is

that many people have these undetected festering infections and are chronically ill as a result. But because they are normally slow growing with no overt symptoms, they only experience the effects of the infection's toxins, without realizing what's causing them. penny <usenethod@...> wrote: What have you heard about treatment outcomes for this? How long is

successful therapy and how common is unsuccessful therapy?

[Guest guest]

I had a parotid gland cyst removed 1 year ago, because

of actinomycos. 10 years ago I had the sinus

operation, but there was no follow up and it spread to

my parotid gland, had it out ,no follow up. In this

past year the infection has spread, throughout my

sinuses and down my cheeks. On my own for the past 10

months i have following the Strattion protocol, plus

Pen VK 500mg 4 times daily for the actinomycosis. And

this last 6 months I have used nystatin oral, with a

eye dropper around my teeth to try and save them. I

have seen several doctors about this, and I have a

sense that they know what it is, but without good

insurance or lots of money, they will not treat you.

I don't mean to be so blunt, but feel like I have

little time to waste. Seems like the infection is

getting into the glands below my jaw bone, and they

are much more trouble. jimd

--- Penny Houle <pennyhoule@...> wrote:

> , although I suspect this is a more common bug

> than realized, I only know a few people personally

> who have gotten the dx (sample needs special

> handling). The people I know who've beaten it are

> few, and their treatment was prolonged i.v. abx

> (multiple therapy) based on constant culturing under

> the supervision of an infectious disease doc. One of

> these patients is a doctor herself. She even

> managed to keep her teeth, with additional work,

> which is pretty astounding. She's been well for

> years now, but still only considers herself in

> remission.

>

> Another friend's actino problem has gotten so bad,

> that she's now trying to find surgeons who

> specialize in facial & jaw reconstruction before

> going after it again because her docs have told her

> that her face will most likely be badly deformed if

> they surgically remove the affected areas. She

> doesn't have a lot of jaw or teeth left at this

> point, primarily due to too much surgery and no abx

> coverage by NICO docs who caused the actino to

> spread and create more fistulas, but surgery is

> still necessary as she's been on constant abx, both

> pill and i.v. The abx holds the bugs at bay but are

> not curing her. Of course, different docs have

> different surgical approaches and techniques, and

> disagree on how successful the outcome might be so

> she's still trying to decide which direction to

> take.

>

> If she hadn't had all the NICO surgery, and had

> just had her root canaled teeth and implant removed,

> she would probably not be in such a serious

> predicament right now. She would probably still be

> sick, but wouldn't be worrying about her face

> collapsing on top of everything else. Bad surgerical

> treatment or even trauma can cause the disease to

> progress more rapidly, whereas left alone, the body

> can wall the bugs off to some degree. I think the

> result is that many people have these undetected

> festering infections and are chronically ill as a

> result. But because they are normally slow growing

> with no overt symptoms, they only experience the

> effects of the infection's toxins, without realizing

> what's causing them.

>

> penny

>

>

>

>

>

>

>

>

> <usenethod@...> wrote:

> What have you heard about treatment

> outcomes for this? How long is

> successful therapy and how common is unsuccessful

> therapy?

>

>

>

>

>

__________________________________________________

[Guest guest]

Jim, :-( That's a very good, yet deeply disturbing, account of what this bacteria is doing to people. While docs turn a blind eye. Makes me sick. The Nystatin eye dropper idea is a great one. Need to remember that. penny jim davis <jimd85379@...> wrote: I had a parotid gland cyst removed 1 year ago, becauseof actinomycos. 10 years ago I had the sinusoperation, but

there was no follow up and it spread tomy parotid gland, had it out ,no follow up. In thispast year the infection has spread, throughout mysinuses and down my cheeks. On my own for the past 10months i have following the Strattion protocol, plusPen VK 500mg 4 times daily for the actinomycosis. Andthis last 6 months I have used nystatin oral, with aeye dropper around my teeth to try and save them. Ihave seen several doctors about this, and I have asense that they know what it is, but without goodinsurance or lots of money, they will not treat you. I don't mean to be so blunt, but feel like I havelittle time to waste. Seems like the infection isgetting into the glands below my jaw bone, and theyare much more trouble. jimd--- Penny Houle <pennyhoule > wrote:> , although I suspect this is a more common bug> than realized, I only

know a few people personally> who have gotten the dx (sample needs special> handling). The people I know who've beaten it are> few, and their treatment was prolonged i.v. abx> (multiple therapy) based on constant culturing under> the supervision of an infectious disease doc. One of> these patients is a doctor herself. She even> managed to keep her teeth, with additional work,> which is pretty astounding. She's been well for> years now, but still only considers herself in> remission.> > Another friend's actino problem has gotten so bad,> that she's now trying to find surgeons who> specialize in facial & jaw reconstruction before> going after it again because her docs have told her> that her face will most likely be badly deformed if> they surgically remove the affected areas. She> doesn't have a lot of jaw or teeth left at this> point,

primarily due to too much surgery and no abx> coverage by NICO docs who caused the actino to> spread and create more fistulas, but surgery is> still necessary as she's been on constant abx, both> pill and i.v. The abx holds the bugs at bay but are> not curing her. Of course, different docs have> different surgical approaches and techniques, and> disagree on how successful the outcome might be so> she's still trying to decide which direction to> take. > > If she hadn't had all the NICO surgery, and had> just had her root canaled teeth and implant removed,> she would probably not be in such a serious> predicament right now. She would probably still be> sick, but wouldn't be worrying about her face> collapsing on top of everything else. Bad surgerical> treatment or even trauma can cause the disease to> progress more rapidly, whereas left alone, the

body> can wall the bugs off to some degree. I think the> result is that many people have these undetected> festering infections and are chronically ill as a> result. But because they are normally slow growing> with no overt symptoms, they only experience the> effects of the infection's toxins, without realizing> what's causing them.> > penny> > > > > > > > > <usenethod > wrote:> What have you heard about treatment> outcomes for this? How long is > successful therapy and how common is unsuccessful> therapy?> > > > > __________________________________________________