Re: I.V. antibiotic balls. Big improvement!

April 12, 2003

In a message dated 4/12/03 12:42:42 PM Pacific Daylight Time,

pennyhoule@... writes:

> automatic

> pumps which determines the delivery rate through small plastic tubes

> that connect them to your picc line. The whole thing fits in my

> pocket. Not only do I feel better with a slower delivery, I'm not

> tied to the i.v. pole at home when I need to be doing other things.

>

> The second link is one that my friend gave me. I think his pharmacy

> uses those.

>

> http://www.opitsourcebook.com/baxter.html

>

> http://www.i-flowcorp.com/3_PRODUCTS/IV_DELIVERY_SYSTEMS/eclipse.html

>

> penny

>

Penny, such good news and thank you for sharing it with us. When you first

told us you were going back on IV's I was a little worried because of the

H*ll you went through when you were on them before. Now, I am glad because

it seems you are not suffering so much because of these new " balls " . I am so

happy. Now, are you on oral cipro still even though you started on IV doxy

and I think even IV cipro..right? Man, you are getting the full

treatment...in the nose, IV, and orally. When your dealing with staph I

guess its the only way to go though...FULL FORCE.

April 13, 2003

Hi Penny, you sure have a lot of stuff you are doing to kill everything.

You are bound to win the " battles of the staphs " this way. That is also good

your daughter is getting treated, that way you won't be tossing the staph

back and forth to each other.

I am not sure if this is even possible but are the vitamin C infusions going

into your PICC or do you have to get a separate injection for that?

Did your friend who saw the doctor who had the same stuff going on happen to

tell you what the doctor did to get better and what antibiotics she put into

the IV to help get her better? Finding out that information would be really

helpful. Especially since she's someone who has already been through it.

I am hanging in there. I am hoping to start my IV in the next week to two

weeks. I think I will look into the " balls " you mentioned. They seem much

easier.

In a message dated 4/12/03 6:25:12 PM Pacific Daylight Time,

pennyhoule@... writes:

> Hi ,

>

> It's too soon to tell yet if I'll be able to tolerate the doxy. But I

> realize now that the other drugs, which are hard for many people

> anyway, should have been administered over a much greater length of

> time. Of course the i.v. home care people never said a thing.

>

> I'm currently on oral cipro, which I feel really good on, and the

> nebulizer cipro (inhalation) which is harsh on the throat. I'm also

> nebulizing the imipenim which seems to work well. And am now starting

> the i.v. doxy. The pseudomonas is not stoppable with one drug alone,

> and that's what I'm dealing with at the moment, plus I'm sure there's

> still lots of staph hiding in less obvious places. My sinuses are

> obviously infected now, so weird since I never had the symptoms

> before. They're not strong symptoms, but I definitely feel pressure

> in them, so the abx are activating things. I just hope I can clear

> them without surgery.

>

> I'm also getting vitamin C infusions along with large amounts of

> magnesium/calcium and b vitamins. These really seem to be helping.

>

> I'm also trying to support my immune system as much as possible, and

> create a hostile environment for the bad bacteria. Am taking things

> like EDTA to help the abx penetrate the bacteria cell wall. I'm also

> taking this new MSP-12000 (a type of colloidal silver) along with the

> saline solution in my nasal irrigator (hydropulse). So I'm attacking

> on all fronts. At the moment I'm feeling quite a bit improved, but

> this is one heck of a roller coaster, and I know I'm nowhere near

> clear of this infection. Amazing, when you consider how many abx I'm

> on. My friend saw a local doctor the other day, who had the same

> stuff going on, and she was on I.V. abx for 3 years before she had

> full remission. She absolutely believes that staph was her problem.

>

> Thanks for the good wishes.

>

> How are you doing?

>

> penny

>

April 13, 2003

Hi ,

It's too soon to tell yet if I'll be able to tolerate the doxy. But I

realize now that the other drugs, which are hard for many people

anyway, should have been administered over a much greater length of

time. Of course the i.v. home care people never said a thing.

I'm currently on oral cipro, which I feel really good on, and the

nebulizer cipro (inhalation) which is harsh on the throat. I'm also

nebulizing the imipenim which seems to work well. And am now starting

the i.v. doxy. The pseudomonas is not stoppable with one drug alone,

and that's what I'm dealing with at the moment, plus I'm sure there's

still lots of staph hiding in less obvious places. My sinuses are

obviously infected now, so weird since I never had the symptoms

before. They're not strong symptoms, but I definitely feel pressure

in them, so the abx are activating things. I just hope I can clear

them without surgery.

I'm also getting vitamin C infusions along with large amounts of

magnesium/calcium and b vitamins. These really seem to be helping.

I'm also trying to support my immune system as much as possible, and

create a hostile environment for the bad bacteria. Am taking things

like EDTA to help the abx penetrate the bacteria cell wall. I'm also

taking this new MSP-12000 (a type of colloidal silver) along with the

saline solution in my nasal irrigator (hydropulse). So I'm attacking

on all fronts. At the moment I'm feeling quite a bit improved, but

this is one heck of a roller coaster, and I know I'm nowhere near

clear of this infection. Amazing, when you consider how many abx I'm

on. My friend saw a local doctor the other day, who had the same

stuff going on, and she was on I.V. abx for 3 years before she had

full remission. She absolutely believes that staph was her problem.

Thanks for the good wishes.

How are you doing?

penny

> In a message dated 4/12/03 12:42:42 PM Pacific Daylight Time,

> pennyhoule@y... writes:

>

> > automatic

> > pumps which determines the delivery rate through small plastic

tubes

> > that connect them to your picc line. The whole thing fits in my

> > pocket. Not only do I feel better with a slower delivery, I'm not

> > tied to the i.v. pole at home when I need to be doing other

things.

> >

> > The second link is one that my friend gave me. I think his

pharmacy

> > uses those.

> >

> > http://www.opitsourcebook.com/baxter.html

> >

> > http://www.i-

flowcorp.com/3_PRODUCTS/IV_DELIVERY_SYSTEMS/eclipse.html

> >

> > penny

> >

>

> Penny, such good news and thank you for sharing it with us. When

you first

> told us you were going back on IV's I was a little worried because

of the

> H*ll you went through when you were on them before. Now, I am glad

because

> it seems you are not suffering so much because of these

new " balls " . I am so

> happy. Now, are you on oral cipro still even though you started on

IV doxy

> and I think even IV cipro..right? Man, you are getting the full

> treatment...in the nose, IV, and orally. When your dealing with

staph I

> guess its the only way to go though...FULL FORCE.

>

April 13, 2003

,

The doctor had some infected teeth removed by an oral surgeon, but

still has a mouthful of root canals. Then an I.D. doctor just kept

testing her for the organisms, and changed abx as needed.

I'm probably going to talk to her this week, for more details. But

each person is so different. I find it encouraging, though, that she

did not have to radically debride her jaw to get better.

This abx routine is not an easy ride. Depending on how late you get

started treating it, it can take a long time. I do believe that as we

get stronger, we can start relying on natural means more, to get our

body's more in balance and resistant to the bad bugs.

The C infusion does go into my picc line. It's great, goes in about 3

or 4 times as fast as a regular infusion.

penny

> Hi Penny, you sure have a lot of stuff you are doing to kill

everything.

> You are bound to win the " battles of the staphs " this way. That is

also good

> your daughter is getting treated, that way you won't be tossing the

staph

> back and forth to each other.

>

> I am not sure if this is even possible but are the vitamin C

infusions going

> into your PICC or do you have to get a separate injection for that?

>

> Did your friend who saw the doctor who had the same stuff going on

happen to

> tell you what the doctor did to get better and what antibiotics she

put into

> the IV to help get her better? Finding out that information would

be really

> helpful. Especially since she's someone who has already been

through it.

>

> I am hanging in there. I am hoping to start my IV in the next week

to two

> weeks. I think I will look into the " balls " you mentioned. They

seem much

> easier.

>

> In a message dated 4/12/03 6:25:12 PM Pacific Daylight Time,

> pennyhoule@y... writes:

>

> > Hi ,

> >

> > It's too soon to tell yet if I'll be able to tolerate the doxy.

But I

> > realize now that the other drugs, which are hard for many people

> > anyway, should have been administered over a much greater length

of

> > time. Of course the i.v. home care people never said a thing.

> >

> > I'm currently on oral cipro, which I feel really good on, and the

> > nebulizer cipro (inhalation) which is harsh on the throat. I'm

also

> > nebulizing the imipenim which seems to work well. And am now

starting

> > the i.v. doxy. The pseudomonas is not stoppable with one drug

alone,

> > and that's what I'm dealing with at the moment, plus I'm sure

there's

> > still lots of staph hiding in less obvious places. My sinuses are

> > obviously infected now, so weird since I never had the symptoms

> > before. They're not strong symptoms, but I definitely feel

pressure

> > in them, so the abx are activating things. I just hope I can

clear

> > them without surgery.

> >

> > I'm also getting vitamin C infusions along with large amounts of

> > magnesium/calcium and b vitamins. These really seem to be helping.

> >

> > I'm also trying to support my immune system as much as possible,

and

> > create a hostile environment for the bad bacteria. Am taking

things

> > like EDTA to help the abx penetrate the bacteria cell wall. I'm

also

> > taking this new MSP-12000 (a type of colloidal silver) along with

the

> > saline solution in my nasal irrigator (hydropulse). So I'm

attacking

> > on all fronts. At the moment I'm feeling quite a bit improved,

but

> > this is one heck of a roller coaster, and I know I'm nowhere near

> > clear of this infection. Amazing, when you consider how many abx

I'm

> > on. My friend saw a local doctor the other day, who had the same

> > stuff going on, and she was on I.V. abx for 3 years before she

had

> > full remission. She absolutely believes that staph was her

problem.

> >

> > Thanks for the good wishes.

> >

> > How are you doing?

> >

> > penny

> >

>

April 15, 2003

I wouldn't get your hopes up so much. Yes, many of us have sinus

problems/infections but that doesn't mean our main problem is the sinus

infections. The symptoms can come from intracellular bacteria for example, such

as chlamydia pneumonia which is the most suspect, and also mycoplasmas. In

other words, if you are looking for something to treat that might make you feel

better, and the sinuses are bothering you, then that makes sense. But I

personally don't see the value in being identified as " chronic sinusitis "

because the treatment is unlike to solve the underlying cause. Unless of course

a person doesn't actually have CFS and their problems are all caused by a sinus

infection. That certainly wouldn't be someone like me who has had numerous

viral and bacterial infections identified, problems with blood flow in my brain,

abnormal brain waves, cognitive problems, immune problems, orthostatic

hypotension, thyroid problems, etc. This all in addition to the sinus problems.

Thanks,

Doris

----- Original Message -----

I know a few PWC's ( excluding Penny, 3 out of 3 in

fact) who have CT scans done which show an inflammation of the sinus

lining but no osteomyelitis, implying infection in the lining. This is

an interesting line of action because we then no longer have the

wastebin diagnosis of CFS/ME, but can then MAYBE be defined with a

diagnosis of chronic sinusitis or rhinosinusitis, both of which have

known treatment paths... Dave

April 15, 2003

Hi Doris,

The sinuses and the mouth are probably the biggest repository's of

bacteria in the body, and if you're colonized, that's a good starting

place for infection to settle. Other people may have it settled in

the teeth or jaw. Even the organs (thyroid) near the mouth and

sinuses. Personally, I feel mine has moved from my sinuses, jaw,

thyroid into my neck and shoulders. I'm currently having my neck and

shoulders worked on by a chiropractic orthopedist, because they're

causing me extreme pain. The reason? Extremely tight muscles. Why

would muscles be this tight? One possible reason: The release of

toxins, which are known to affect the muscles. Fortunately, he's

loosening the area up and I'm improving quite a bit. Can actually use

my left arm again.

Anyway, back to sinus infections. My doctor friend's infection went

through the sinus wall (osteomyelitis) and into his brain, where it

caused seizures, and the seizures caused his premature death. Treat

the organisms creating this problem, very possibly will help with the

other organisms you mention as well. Since Coagulase Negative STaph

and Staph Aureus are so difficult to treat, treating them is a good

starting point. It's really frustrating that people are looking for

mysteriours bacteria when we've got a huge problem with Staph right

in front of our faces. Any good infectious disease doc will tell you

that any organism, if it becomes colonized and haemolytic, can make

you really sick. The australian researchers, and now Shoemaker are

saying that this colonization, the biofilm around the bacteria, and

the toxins being released are the real problem. Simple nasal swabs

can give us the evidence we need to try treatments and see if we

respond, the way I respond to Cipro.

It's interesting that they don't have these staph problems in Russia.

You know why? Because they don't use antibiotics, and they haven't

created these abx resistant monsters. They use phage therapy. I just

wish they'd find a phage for staph, but of course, they don't need to

because staph's not a problem for them! If I get well, I may have to

move to Russia!

penny

> I wouldn't get your hopes up so much. Yes, many of us have sinus

problems/infections but that doesn't mean our main problem is the

sinus infections. The symptoms can come from intracellular bacteria

for example, such as chlamydia pneumonia which is the most suspect,

and also mycoplasmas. In other words, if you are looking for

something to treat that might make you feel better, and the sinuses

are bothering you, then that makes sense. But I personally don't see

the value in being identified as " chronic sinusitis " because the

treatment is unlike to solve the underlying cause. Unless of course

a person doesn't actually have CFS and their problems are all caused

by a sinus infection. That certainly wouldn't be someone like me who

has had numerous viral and bacterial infections identified, problems

with blood flow in my brain, abnormal brain waves, cognitive

problems, immune problems, orthostatic hypotension, thyroid problems,

etc. This all in addition to the sinus problems.

> Thanks,

> Doris

> ----- Original Message -----

> I know a few PWC's ( excluding Penny, 3 out of 3 in

> fact) who have CT scans done which show an inflammation of the

sinus

> lining but no osteomyelitis, implying infection in the lining.

This is

> an interesting line of action because we then no longer have the

> wastebin diagnosis of CFS/ME, but can then MAYBE be defined with

a

> diagnosis of chronic sinusitis or rhinosinusitis, both of which

have

> known treatment paths... Dave

>

April 15, 2003

I wasn't trying to make any point to you. In fact, you make my point. You are

not being treated for " chronic sinusitis " , you are treating staph as the

underlying cause. Which was the point I was trying to make.

But as far as staph, I am watching your results closely. So far it is simple,

why staph and not something else? We have talked about this before I think.

There are at least 20 viable theories and I can't try them all. I improved on

doxycycline and not on some other antibiotics so that is what I continue to

take.

Thanks,

Doris

----- Original Message -----

From: penny