Pennyhoule, need your help about actinomycosis

[Guest guest]

Hi Penny,

I wrote u a long email describing my situation and I'm not sure if you

got it or not. So I saved it on my email. I wanted to cut and paste it

here but my comp is not working well... I really need your advice as I

am very sick and have some questions. Please email me bunnylyz@...

thanks soo much, your help is appreciated

sincerely,

Lynn

[Guest guest]

oops meant bunnylyz@...

[Guest guest]

Hi Lynn,

I haven't had time to answer your email yet (yes I received it).

I've just recently heard from the person who got her actino dx'd at

the Mayo Clinic (I've forwarded your email to her).

Here's the problem. As you know, it's extremely difficult to find

docs who'll treat this problem. My friend had an intern in another

state send her to the Mayo for the test. The docs at the Mayo do not

like dealing with these jaw infections because the success rate is

so low, but they did the test reluctantly and the test came back

positive for actino.

My friend told me that you need to do 2 things. And it's not

necessary to go to the Mayo Clinic. First find an internist or some

saavy doctor who understands that you've got a major infection

causing you so much unbelievable suffering since childhood (how they

can't see this, after what you've described, is unbelievable), and

convince this doc to send the request to culture actinomyces to a

teaching hospital lab (along with cultures of any other organisms

that shouldn't be there). Those guys can usually culture it because

they know HOW to culture it. Even hospital labs are often clueless.

The teaching hospital lab can give you the specific instructions to

prevent the specimen from being destroyed (time, air, temp, etc.).

But first, my friend also said that you need to contact Dr. Glueck

(I think he's in Cincinatti - do a google search) and get yourself

tested for blood clotting disorders. He's one of the foremost

experts on coagulation and clotting disorders. She said that in

cases like yours where you've done so badly after surgery and

respond only minimally to the abx, that you've probably got reduced

blood flow to the region of the infection due to clotting issues, so

that the antibiotics are not really getting there, allowing the

bacteria to flourish in your jaw (resulting in that horribly swollen

face you've had for years now). Getting a report from Dr. Gleuck,

will give you a lot more credibility when dealing with these other

docs. Getting positive cultures for bacteria in your jaw will also

give you more credibility. If you can prove you have chronic

osteomyelitis or even osteonecrosis of the jaw, your insurance will

have to be much more responsive in paying for treatments.

This is really an outrage. You are barely even an adult at 18. I

can't believe they've allowed you to suffer like this for all these

years, a small child allowed to suffer with so much pain is

incomprehensible. I know you're sick, but you have to educate

yourself, arm yourself with studies and friends and family, and go

in there demanding that they get you better. Tell them you don't

want any more excuses. That you deserve to be well, and you no

longer will settle for medical incompetence! That your entire life

is before you, and you'd like to start living it finally. You're

much too young to let these guys let you fall by the way side. If

this infection goes unchecked, things will only get worse. Believe

me, I know from experience.

Okay, I hope this helps a little. I know it's hard, but this is what

we're all go through, trying to find just one sympathetic doctor

who's willing to put in the time it takes to help us get well, and

starting from there. Most doctors aren't that compassionate,

unfortunately. I strongly recommend taking a strong person in there

with you, and whatever you do, know what you want and stay on that

point. Don't let them distract you, or talk about too many issues.

Tell them you want cultures, and you want coagulation studies, and

based on those findings you want the PROPER treatment, no more

guesswork!!!!

Best of luck,

penny

> Hi Penny,

> I wrote u a long email describing my situation and I'm not sure if

you

> got it or not. So I saved it on my email. I wanted to cut and

paste it

> here but my comp is not working well... I really need your advice

as I

> am very sick and have some questions. Please email me bunnylyz@a...

> thanks soo much, your help is appreciated

> sincerely,

> Lynn

[Guest guest]

Lynn,

I just want to add that you don't need to be demanding with Gleuck.

He understands this stuff, and is very nice. I really think you

should make an appointment with him for the blood studies,

independent of any other doctor. If he tests you positive for

clotting disorders, getting you on a blood thinner will allow those

abx that are minimally helping you, do a better job.

You should also know that staph aureus and actinomyces are the two

most common bugs that infect bone. If your docs absolutely refuse to

culture these bugs (i.e. take a bone biopsy or some other kind of

sample) you can show them articles which point to these organisms

infecting bone, and show them the most successful drugs used against

these organisms. At least this way, if they guess on treatment,

they'll have a much better shot at getting the right drug. You can

also try to convince your docs to do a nasal swab for bacteria, and

if any of the bugs in your nose test resistant to various

antibiotics, there's a darn good chance the ones in your bone will

be resistant as well. So that also helps you determine which

antibiotic to choose. No point in taking ones that are ineffective,

and will just make your organisms stronger.

One last thing. Your doc should tell the lab not to throw out any

organisms that are considered " normal flora " like staph aureus,

because staph aureus in your bone is not normal at all. Neither is

strep, which is another bug that infects bone. Tell him they need to

keep growing these bugs for at least a week or so, some are very

slow growing, and test these organisms for drug resistance

(sensitivities). This will save you a lot of unsuccessful antibiotic

therapy. When I first got my culture ressults, I was shocked to find

out that my organisms were already resistant to 12 of the 14

aantibiotics they tested. So most of the drugs docs gave me for

sinus infections, etc., were completely useless.

I know it's a lot to take in. Keep reading and educating yourself.

This is a really good site and there are some good forums on

osteomyelitis and osteonecrosis too, that you can check. You've got

to do everything right if you want to get well. There's no easy or

short term fix. You're looking at long term treatment, which your

doc needs to understand as well. Two weeks of antibiotics is NOT an

option.

penny

> > Hi Penny,

> > I wrote u a long email describing my situation and I'm not sure

if

> you

> > got it or not. So I saved it on my email. I wanted to cut and

> paste it

> > here but my comp is not working well... I really need your

advice

> as I

> > am very sick and have some questions. Please email me

bunnylyz@a...

> > thanks soo much, your help is appreciated

> > sincerely,

> > Lynn

[Guest guest]

One last thing. You should really try to find some amazing imaging

expert to do some CT scans of the areas where you first had that

abcess when you were 8, and also any areas that are especially

painful now. They may be able to see more clearly where the problem

is originating, and it will be more evidence for you to receive

treatment. But you don't want to have any more surgery, not without

the proper blood thinners (if needed), and cultures and

sensitivities to guide your treatment choices.

penny

> > Hi Penny,

> > I wrote u a long email describing my situation and I'm not sure

if

> you

> > got it or not. So I saved it on my email. I wanted to cut and

> paste it

> > here but my comp is not working well... I really need your

advice

> as I

> > am very sick and have some questions. Please email me

bunnylyz@a...

> > thanks soo much, your help is appreciated

> > sincerely,

> > Lynn

[Guest guest]

>

> Hi Penny thanks soo much for your response.

I am so worried about this unsolved problem I Ihaven't had much sleep

for the past several nights. How can I possibly find a competent and

sympathetic doctor? My mom believe's it's impossible to find and

culture and feels hopeless and helpless reflecting that back on me.

If only your friend would know of a good doctor I would travel.

The swelling is even now sooo chronic that no one believes me, they

just think that's my " special face " ...There's no current vivible lump

or anything, just one blown up ballon after ten years and the past 2

years ACUTE.I am soo terrified and worried, what if it's not actino,

but another bacteria from the extraction ..this is like finding a

needle in a haysack. Luckily I have my lyme results so maybe I'll do

penicillin G anyways ..?? Bottom line though, I don't know what

condition my face is in. Good scans? What kind of scans will tell me?

Cat scans? Could you ask your friend to email me? I just really need

all the help and afvice out there. This just seems impossible, like a

dead end and my condition's only worsening and I'm afraid that after 10

years of this I won't be able to take much more. i think the abx just

stops it from entering my brain at this point, one day off and ..Penny

also, since I don't currently have the characteristic pus, what will

they do? I just feel burning fluid dripping down my cheeks and jaw and

sometimes it feels like it will break through my ears but never does. I

never had sinus problems really, just the swelling, more ear infections

constantly. It spread from my jaw up around the ears I believe to the

cheek bones. I really don't know what to do. So would I have to give a

bone sample? If so I have my upper Wisdom teeth left. I have a strnge

story to tell you about my wisdom teeth. I already told you how the

toxins whent out through the open holes and then after my face whent

down like a popped ballon and then swelled back up after the holes

closed only to be nearly dying? Well, I have my extracted bottom WS in

a box saved and well I took a look at them a few months ago when

cleaning my drawer. They look like an ancient mummie's teeth, they are

black and crumbly: it seems as if whatever bacteria present on my teeth

reacted with oxygen or somehting for that characteriatic color to arise.

Would they be able to detect actino on them still? I am too scared to

bet my upper ones out after my experience. So Scans, what else? Does

your friend have burnt hair from the toxins? I described the feeling of

mathces, perhaps hair microbiology will be able to say what toxins are

harming me.. Maybe if sulfur is a key factor, then that may help?

> What other tests? I don't belive I will find anyone that can help me

here without connections as I would get from you and your friend. I saw

365 docs last year only to be annoyed and humiliated by their ignorance

until i got my ++lyme reasults to prove them wrong. There is no way

anyone will belive a teenager when it comes to her face- nope!!!They

go, body image, well I'm slowly slippin away, some bod image..

please email me and advise me some more. Myabe I will travel but will

gewt good scans menatime. I need to get this solved this month!

thanks soo much,

sincerely,

Lynn

[Guest guest]

--Also, could u let me know how your friend's doing?

penicillin G is the drug of choice correct? macrolides like biaxin

won't really help for actino, only for lyme right? Maybe I just haven't

been on the right meds!! your friend had the fistula so it was easier,

what will I do???Oh boy!

thanks

Lynn

[Guest guest]

Lynn

Who's your best dr. at this point? Are they all not helpfull? I

would without a moment's hesitation go and get a swab done of the

area 'even around the wisdom site to get an idea of what's there'--

You basically want to know if you have staph areus or heavy growths

of any staphs.Pseudonomads also springs to mind. What generally can

happen is that you get a strong bacteria that kills of all competing

species and this culture may start to unravell the kind of organisms

your dealing with.

This culture is very important- your doctor has to write up nothing

to be dicounted as normal flora we need all the facts of the

culture.Actino is something you'll also get done down the track but

simple cultures are available seven days a week and you can never do

enough to discover what is going on.As you are experiencing this

ilness at a young age your immune system is kicking in big time so

you really have a wonderfull prognosis.That swelling normally no

longer occurs in the 40 plus age group we are like burn't out by

this stage in our lives.

>

> >

> > Hi Penny thanks soo much for your response.

> I am so worried about this unsolved problem I Ihaven't had much

sleep

> for the past several nights. How can I possibly find a competent

and

> sympathetic doctor? My mom believe's it's impossible to find and

> culture and feels hopeless and helpless reflecting that back on me.

> If only your friend would know of a good doctor I would travel.

> The swelling is even now sooo chronic that no one believes me,

they

> just think that's my " special face " ...There's no current vivible

lump

> or anything, just one blown up ballon after ten years and the past

2

> years ACUTE.I am soo terrified and worried, what if it's not

actino,

> but another bacteria from the extraction ..this is like finding a

> needle in a haysack. Luckily I have my lyme results so maybe I'll

do

> penicillin G anyways ..?? Bottom line though, I don't know what

> condition my face is in. Good scans? What kind of scans will tell

me?

> Cat scans? Could you ask your friend to email me? I just really

need

> all the help and afvice out there. This just seems impossible,

like a

> dead end and my condition's only worsening and I'm afraid that

after 10

> years of this I won't be able to take much more. i think the abx

just

> stops it from entering my brain at this point, one day off

and ..Penny

> also, since I don't currently have the characteristic pus, what

will

> they do? I just feel burning fluid dripping down my cheeks and

jaw and

> sometimes it feels like it will break through my ears but never

does. I

> never had sinus problems really, just the swelling, more ear

infections

> constantly. It spread from my jaw up around the ears I believe to

the

> cheek bones. I really don't know what to do. So would I have to

give a

> bone sample? If so I have my upper Wisdom teeth left. I have a

strnge

> story to tell you about my wisdom teeth. I already told you how

the

> toxins whent out through the open holes and then after my face

whent

> down like a popped ballon and then swelled back up after the holes

> closed only to be nearly dying? Well, I have my extracted bottom

WS in

> a box saved and well I took a look at them a few months ago when

> cleaning my drawer. They look like an ancient mummie's teeth, they

are

> black and crumbly: it seems as if whatever bacteria present on my

teeth

> reacted with oxygen or somehting for that characteriatic color to

arise.

> Would they be able to detect actino on them still? I am too scared

to

> bet my upper ones out after my experience. So Scans, what else?

Does

> your friend have burnt hair from the toxins? I described the

feeling of

> mathces, perhaps hair microbiology will be able to say what toxins

are

> harming me.. Maybe if sulfur is a key factor, then that may help?

> > What other tests? I don't belive I will find anyone that can

help me

> here without connections as I would get from you and your friend.

I saw

> 365 docs last year only to be annoyed and humiliated by their

ignorance

> until i got my ++lyme reasults to prove them wrong. There is no

way

> anyone will belive a teenager when it comes to her face- nope!!!

They

> go, body image, well I'm slowly slippin away, some bod image..

> please email me and advise me some more. Myabe I will travel but

will

> gewt good scans menatime. I need to get this solved this month!

> thanks soo much,

> sincerely,

> Lynn

[Guest guest]

Hi Lynn,

I sympathize, but I just don't have any specific answers. I can't

even find doctors who know how to deal with this. Not all in one

town. My friend, even as well versed as she is, who has an amazing

way with getting docs to help her, is still struggling (due to

having so much bone in her face eaten away). She's currently very

ill, on i.v. antibiotics and I don't know if she can contact you or

not. I sent her your email.

We're all struggling, trying to find decent doctors. You've just got

to take it one step at a time. For instance, see Gleuck and get

tested for the clotting disorders. This will be a big step in the

right direction for getting better treatment. Then find a doc who

will work with you in trying to treat the infection properly, by

getting good cultures. You probably have co-infections. Most of us

do. You've got to go after the ones causing the most damage. We know

staph aureus is the number one bacteria involved in bone infections,

and that Actinomyces worm holes it's way through the bone, --very

damaging. It's a step by step process. But each step can help you

feel better. At one point I thought I was dying. Couldn't get out of

bed. The right antibiotic gave me the will to live again, and I

started a slow process of trying to get well, with numerous ups and

downs.

I know you're desperate, but there's no other way. How's your

energy? If you've got any energy at all, then this is the time to

really get some doctors on your side. Do you have any photos of your

face when the swelling went down right after the extraction? If the

swelling goes down again, be sure to get photos.

I'm VERY happy that you still have those old wisdom teeth. This is

fantastic. They won't test for any organisms at this point, but they

can definitely still be tested for ostenecrosis, which sounds like a

sure bet if they turned black and crumbled. That's what

osteonecrosis is, dead bone, and that's what's happening inside your

head as a result of the infection. It's causing the bone to die.

Osteonecrosis also stops blood flow, so the remaining tooth that's

affected can't live. Do a search for Dr. Beauquot. He's another

great doc, very helpful and willing to talk to you, who's remarkably

talented when it comes to dxing osteoncrosis in teeth. You can send

him some of that old tooth, and he can give you a dx. That's a good

starting point. Combine that with the blood clotting tests and

you've got a lot more ammunition for these doctors, and you can

demand they not put you off!

Whatever you do, it's wise to not pursue or talk about NICO with any

legitimate doctor, because they will not work with you at all. Only

the NICO " quacks " will be eager to " help " you, but from my

experience, they make things far worse, surgery without antibiotics,

cutting away too much bone (debriding) and not using hyperbaric

oxygen or anything that would be considered standard in any other

bone infection in your body. IMO, you should stay away from

the " NICO " docs, which you'll probably come across in your research.

Lynn, I wish I had some answers, but you can go to forum after

forum, and see so many people in the same spot. Trying to find a

team of doctors to help them, and not make them worse. If I had all

the perfect doctors lined up, I can guarantee I wouldn't be sick

anymore. Either that, or I'd know there's no cure at all. The point

is, we're still looking for those perfect doctors too. This is a

very difficult disease to treat.

You can tell your mom that figuring out what is wrong is the first,

most important step in your healing process. Giving up hope will not

help you get better. And don't let doctors tell you that it's

your " special face " when you know better. Don't take any of their

superior bull. Tell them their " special faces " look just like butts,

because they've had them stuck up there so long. grrrr. :-(

You've really got to demand help. And find ways to prove that you

should get the treatment you want. That means a lot of research and

study that supports your own situation.

penny

>

> >

> > Hi Penny thanks soo much for your response.

> I am so worried about this unsolved problem I Ihaven't had much

sleep

> for the past several nights. How can I possibly find a competent

and

> sympathetic doctor? My mom believe's it's impossible to find and

> culture and feels hopeless and helpless reflecting that back on me.

> If only your friend would know of a good doctor I would travel.

> The swelling is even now sooo chronic that no one believes me,

they

> just think that's my " special face " ...There's no current vivible

lump

> or anything, just one blown up ballon after ten years and the past

2

> years ACUTE.I am soo terrified and worried, what if it's not

actino,

> but another bacteria from the extraction ..this is like finding a

> needle in a haysack. Luckily I have my lyme results so maybe I'll

do

> penicillin G anyways ..?? Bottom line though, I don't know what

> condition my face is in. Good scans? What kind of scans will tell

me?

> Cat scans? Could you ask your friend to email me? I just really

need

> all the help and afvice out there. This just seems impossible,

like a

> dead end and my condition's only worsening and I'm afraid that

after 10

> years of this I won't be able to take much more. i think the abx

just

> stops it from entering my brain at this point, one day off

and ..Penny

> also, since I don't currently have the characteristic pus, what

will

> they do? I just feel burning fluid dripping down my cheeks and

jaw and

> sometimes it feels like it will break through my ears but never

does. I

> never had sinus problems really, just the swelling, more ear

infections

> constantly. It spread from my jaw up around the ears I believe to

the

> cheek bones. I really don't know what to do. So would I have to

give a

> bone sample? If so I have my upper Wisdom teeth left. I have a

strnge

> story to tell you about my wisdom teeth. I already told you how

the

> toxins whent out through the open holes and then after my face

whent

> down like a popped ballon and then swelled back up after the holes

> closed only to be nearly dying? Well, I have my extracted bottom

WS in

> a box saved and well I took a look at them a few months ago when

> cleaning my drawer. They look like an ancient mummie's teeth, they

are

> black and crumbly: it seems as if whatever bacteria present on my

teeth

> reacted with oxygen or somehting for that characteriatic color to

arise.

> Would they be able to detect actino on them still? I am too scared

to

> bet my upper ones out after my experience. So Scans, what else?

Does

> your friend have burnt hair from the toxins? I described the

feeling of

> mathces, perhaps hair microbiology will be able to say what toxins

are

> harming me.. Maybe if sulfur is a key factor, then that may help?

> > What other tests? I don't belive I will find anyone that can

help me

> here without connections as I would get from you and your friend.

I saw

> 365 docs last year only to be annoyed and humiliated by their

ignorance

> until i got my ++lyme reasults to prove them wrong. There is no

way

> anyone will belive a teenager when it comes to her face- nope!!!

They

> go, body image, well I'm slowly slippin away, some bod image..

> please email me and advise me some more. Myabe I will travel but

will

> gewt good scans menatime. I need to get this solved this month!

> thanks soo much,

> sincerely,

> Lynn