Am I Well? Question to the Group

[Guest guest]

I am trying to figure out if I may be well, with only nerve/tissue

damage left behind after the infection.

The focal infection was in my sinuses, eyes, septum, ears, and jaw.

It has now been 32 months. I had severe CFS with toxic malaise for

approximately 22 months. Multiple tissue (from sinus surgery) and

phlem cultures never grew cell wall organisms with the exception of

epidermidis (coag neg. staph). I had lots of vancomycin, ceftriaxon,

empenem, ampicillin/clauv. acid, and clindamycin IV's to take care

of the coag neg staph or any other cw organisms. I was however myco

positive (blood test), with high antibody titers, but PCR negative

as I was on abx.

Toxic malaise has been really going away the last few months. I have

been on flagyl, macrolides and tetracyclines for the last 16 months

(approximately in that order). I have also done some pulsing. With

the last 3 months of doxy, I have noticed that the toxic malaise has

gone from about 20% of it's greatest intensity to almost zero (with

the exception of a very subtle wave during a stressful moment, ie.

noise, excitement, etc.). I still get tired fast with excertion vs.

tired all the time. I am having near normal moments with the

exception of local pain in my head at all the focal points. I wonder

(and this is my question), might the bugs be dead or very near

death, leaving behind a lot of damage (thus the local pain) that

will possibly take a long long time to go away, or, is the local

pain likely cwd that are still there?? Does anyone have any

experience with this phase of the disease process? Any insight or

opinions would be greatly appreciated. I am trying to figure out

what tone to set for my next doctor appt. in 16 days.

Thanks,

[Guest guest]

The syphilis spirochete not uncommonly persists after antibiotic

treatment, but for unknown reasons the persisters rarely cause new

lesions. Yet tertiary lesions may persist in the CNS (elsewhere?), and

they may represent permanent damage. But tertiary syphilis causes

necrotizing granulomas - microscopic foci of tissue death. Most

infections dont seem to do this, as far as I know. Sarc causes

*non*-necrotizing granulomas only, as far as I know.

Congratulations on your improvement.

Personally, I would lean towards thinking organisms are still in

there. But I dont know what I would study to find out. I've heard that

when neurological problems heal they do so very slowly, but I myself

dont know.

Getting tired with exertion could be mild microvascular inflammation,

or neurogenic, or could be a metabolic deficit, or maybe something

else?

Personally, I'd probably keep on bombin.

<drgaftop@y...> wrote:

> I am trying to figure out if I may be well, with only nerve/tissue

> damage left behind after the infection.

>

> The focal infection was in my sinuses, eyes, septum, ears, and jaw.

> It has now been 32 months. I had severe CFS with toxic malaise for

> approximately 22 months. Multiple tissue (from sinus surgery) and

> phlem cultures never grew cell wall organisms with the exception of

> epidermidis (coag neg. staph). I had lots of vancomycin, ceftriaxon,

> empenem, ampicillin/clauv. acid, and clindamycin IV's to take care

> of the coag neg staph or any other cw organisms. I was however myco

> positive (blood test), with high antibody titers, but PCR negative

> as I was on abx.

>

> Toxic malaise has been really going away the last few months. I have

> been on flagyl, macrolides and tetracyclines for the last 16 months

> (approximately in that order). I have also done some pulsing. With

> the last 3 months of doxy, I have noticed that the toxic malaise has

> gone from about 20% of it's greatest intensity to almost zero (with

> the exception of a very subtle wave during a stressful moment, ie.

> noise, excitement, etc.). I still get tired fast with excertion vs.

> tired all the time. I am having near normal moments with the

> exception of local pain in my head at all the focal points. I wonder

> (and this is my question), might the bugs be dead or very near

> death, leaving behind a lot of damage (thus the local pain) that

> will possibly take a long long time to go away, or, is the local

> pain likely cwd that are still there?? Does anyone have any

> experience with this phase of the disease process? Any insight or

> opinions would be greatly appreciated. I am trying to figure out

> what tone to set for my next doctor appt. in 16 days.

>

> Thanks,

[Guest guest]

Wow, , it's wonderful to hear of your progress.

I have 2 suggestions.

First suggestion: Do not stop treatment yet! (I made the mistake of

stopping too early, because I just got sick of it, and I was feeling

pretty good).

Second suggestion: Do any of your mild symptoms improve if you take

abx? If you haven't tried, you might want to do some abx probes. If

you feel any kind of reaction, then it's a sign that you've still

got a ways to go.

My guess is you're not out of the woods yet, but you're definitely

getting closer to seeing the light of day. You could also try some

anti-inflammatories and see if you're dealing with an over active

inflammatory response. I don't think we know for sure yet whether

the inflammatory cascade can get stuck in the " on " position,

regardless of our disease state or not, but what I hear from the

people who experience a lot of pain, it's usually relieved while

they're on an effective abx. Especially dental pain. This is the

case for me, although abx never resolved the body pain or migraines.

I'm taking Benicar for that.

If it were me, I would tell my doc that I've seen too many people

relapse to give the bugs a chance to regain their footing now. I

think it's okay to give your body a break now and then, but believe

me, the bugs come back stronger than ever if you let them. Even Barb

and Tony, who feel fantastic, are very vigilant and if there are any

signs of symptoms, they go on the offensive. You probably need at

the very least, even if symptom free, to stay on some kind of

maintenance dose for a while?

I have a couple of questions for you. One, did you have any kind of

surgery for your dental/sinus infections? Were your abx chosen based

on your organisms' abx sensitivities? And could you please tell me

who your doctors are? You can back channel me if you need to protect

their privacy.

Very happy to hear you're improving so much. You've made my day!

penny

> I am trying to figure out if I may be well, with only nerve/tissue

> damage left behind after the infection.

>

> The focal infection was in my sinuses, eyes, septum, ears, and

jaw.

> It has now been 32 months. I had severe CFS with toxic malaise for

> approximately 22 months. Multiple tissue (from sinus surgery) and

> phlem cultures never grew cell wall organisms with the exception

of

> epidermidis (coag neg. staph). I had lots of vancomycin,

ceftriaxon,

> empenem, ampicillin/clauv. acid, and clindamycin IV's to take care

> of the coag neg staph or any other cw organisms. I was however

myco

> positive (blood test), with high antibody titers, but PCR negative

> as I was on abx.

>

> Toxic malaise has been really going away the last few months. I

have

> been on flagyl, macrolides and tetracyclines for the last 16

months

> (approximately in that order). I have also done some pulsing. With

> the last 3 months of doxy, I have noticed that the toxic malaise

has

> gone from about 20% of it's greatest intensity to almost zero

(with

> the exception of a very subtle wave during a stressful moment, ie.

> noise, excitement, etc.). I still get tired fast with excertion

vs.

> tired all the time. I am having near normal moments with the

> exception of local pain in my head at all the focal points. I

wonder

> (and this is my question), might the bugs be dead or very near

> death, leaving behind a lot of damage (thus the local pain) that

> will possibly take a long long time to go away, or, is the local

> pain likely cwd that are still there?? Does anyone have any

> experience with this phase of the disease process? Any insight or

> opinions would be greatly appreciated. I am trying to figure out

> what tone to set for my next doctor appt. in 16 days.

>

> Thanks,

[Guest guest]

:

The body is an amazing peice of work. It can do some incredible

repairs.

It certainly sounds like your health is heading in the right

direction, and I'm happy for you.

Your localized pain may well be part of the healing process, I

guess time will tell on that account. That question may be answered

(if you continue to improve) over the next several weeks untill your

appointment.

You may ask your Doc. if it just takes time for

your high titers to fall- it takes some time for these antibodies to

die out after the infection is gone.

You may have seen some other posters mention that after they

went off their abx, the trend continued in the right direction

and they felt better and better.

I know that my friend who had an unspecified infection on her

(atrificial) heart valves (and had a 35% chance of dying) was very

worried when she went off her IV abx. But she did not relapse.

And that was last summer, and she's still fine.

Keep us posted.

Barb

> I am trying to figure out if I may be well, with only nerve/tissue

> damage left behind after the infection.

>

> The focal infection was in my sinuses, eyes, septum, ears, and jaw.

> It has now been 32 months. I had severe CFS with toxic malaise for

> approximately 22 months. Multiple tissue (from sinus surgery) and

> phlem cultures never grew cell wall organisms with the exception of

> epidermidis (coag neg. staph). I had lots of vancomycin,

ceftriaxon,

> empenem, ampicillin/clauv. acid, and clindamycin IV's to take care

> of the coag neg staph or any other cw organisms. I was however myco

> positive (blood test), with high antibody titers, but PCR negative

> as I was on abx.

>

> Toxic malaise has been really going away the last few months. I

have

> been on flagyl, macrolides and tetracyclines for the last 16 months

> (approximately in that order). I have also done some pulsing. With

> the last 3 months of doxy, I have noticed that the toxic malaise

has

> gone from about 20% of it's greatest intensity to almost zero (with

> the exception of a very subtle wave during a stressful moment, ie.

> noise, excitement, etc.). I still get tired fast with excertion vs.

> tired all the time. I am having near normal moments with the

> exception of local pain in my head at all the focal points. I

wonder

> (and this is my question), might the bugs be dead or very near

> death, leaving behind a lot of damage (thus the local pain) that

> will possibly take a long long time to go away, or, is the local

> pain likely cwd that are still there?? Does anyone have any

> experience with this phase of the disease process? Any insight or

> opinions would be greatly appreciated. I am trying to figure out

> what tone to set for my next doctor appt. in 16 days.

>

> Thanks,

[Guest guest]

You definately still have some bugs there and the coag neg staph on

it's own is your biggest culprit IMO. The staph is that TOXIC it

really uses up the co2 environment to full advantage to blow away

any competing microbes.The roof of your mouth may have pseudonomads

still. I find there's no coag neg staph were the environmment

favours pseudonomads.But at least you brought some idea of what it's

taken to get you back a long ways.

tony

> > I am trying to figure out if I may be well, with only

nerve/tissue

> > damage left behind after the infection.

> >

> > The focal infection was in my sinuses, eyes, septum, ears, and

> jaw.

> > It has now been 32 months. I had severe CFS with toxic malaise

for

> > approximately 22 months. Multiple tissue (from sinus surgery)

and

> > phlem cultures never grew cell wall organisms with the exception

> of

> > epidermidis (coag neg. staph). I had lots of vancomycin,

> ceftriaxon,

> > empenem, ampicillin/clauv. acid, and clindamycin IV's to take

care

> > of the coag neg staph or any other cw organisms. I was however

> myco

> > positive (blood test), with high antibody titers, but PCR

negative

> > as I was on abx.

> >

> > Toxic malaise has been really going away the last few months. I

> have

> > been on flagyl, macrolides and tetracyclines for the last 16

> months

> > (approximately in that order). I have also done some pulsing.

With

> > the last 3 months of doxy, I have noticed that the toxic malaise

> has

> > gone from about 20% of it's greatest intensity to almost zero

> (with

> > the exception of a very subtle wave during a stressful moment,

ie.

> > noise, excitement, etc.). I still get tired fast with excertion

> vs.

> > tired all the time. I am having near normal moments with the

> > exception of local pain in my head at all the focal points. I

> wonder

> > (and this is my question), might the bugs be dead or very near

> > death, leaving behind a lot of damage (thus the local pain) that

> > will possibly take a long long time to go away, or, is the local

> > pain likely cwd that are still there?? Does anyone have any

> > experience with this phase of the disease process? Any insight

or

> > opinions would be greatly appreciated. I am trying to figure out

> > what tone to set for my next doctor appt. in 16 days.

> >

> > Thanks,

[Guest guest]

,

Having a positive antibody titer for Mycos after ABX is very good.

It was exactly what I was telling Tony. Negative PCR, and positive

antibodies. Possibly the ABX exposed your immune sytem to the Mycos

where it then built up the arsenal of antibodies needed to destroy

it. Part of the problem with Mycos is that they aren't usually

where your immune sytem can get to them, hence you generally have

negative antibodies results.

The long course of ABX likely flushed them out of hiding by making

it impossible for them to re-enter new cells once they had used the

previous host up. In the open, your immune system could see them.

Very cool. A good sign.

I have been dealing with 2 Mycos and likely other bugs, but have

been using ABX for a few years on and off. I actually run a low

grade fever now, rather then a sub normal one. That particular part

of the immune system now knows it has something to fight. I am now

very well myself. No matter how good you feel though, never let your

guard down again. Mycos will never be gone. They may be dormant, but

always ready to explode on to the scene if they have the oppurtunity.

> I am trying to figure out if I may be well, with only nerve/tissue

> damage left behind after the infection.

>

> The focal infection was in my sinuses, eyes, septum, ears, and

jaw.

> It has now been 32 months. I had severe CFS with toxic malaise for

> approximately 22 months. Multiple tissue (from sinus surgery) and

> phlem cultures never grew cell wall organisms with the exception

of

> epidermidis (coag neg. staph). I had lots of vancomycin,

ceftriaxon,

> empenem, ampicillin/clauv. acid, and clindamycin IV's to take care

> of the coag neg staph or any other cw organisms. I was however

myco

> positive (blood test), with high antibody titers, but PCR negative

> as I was on abx.

>

> Toxic malaise has been really going away the last few months. I

have

> been on flagyl, macrolides and tetracyclines for the last 16

months

> (approximately in that order). I have also done some pulsing. With

> the last 3 months of doxy, I have noticed that the toxic malaise

has

> gone from about 20% of it's greatest intensity to almost zero

(with

> the exception of a very subtle wave during a stressful moment, ie.

> noise, excitement, etc.). I still get tired fast with excertion

vs.

> tired all the time. I am having near normal moments with the

> exception of local pain in my head at all the focal points. I

wonder

> (and this is my question), might the bugs be dead or very near

> death, leaving behind a lot of damage (thus the local pain) that

> will possibly take a long long time to go away, or, is the local

> pain likely cwd that are still there?? Does anyone have any

> experience with this phase of the disease process? Any insight or

> opinions would be greatly appreciated. I am trying to figure out

> what tone to set for my next doctor appt. in 16 days.

>

> Thanks,

[Guest guest]

Thanks all for the replies.

Penny, It all got out of control with the first sinus surgery. Had

another sinus surgery as well, but I don't think it was necessary.

The ent did said he saw no necrosis. The iv's were based on the coag

neg staph and another time capnocytophagia, though my docs knew that

was " just a way they could legitimately put me on the iv's " . I

responded some on the clinda, and after all the others did no good,

I pretty much figured out by reading that I had CWD, did some

testing of my own with abx, and started seeking docs that would go

along with my theory. The high dose flagyl treatment was the first

time I noticed a reduction in CFS (2000mg doses). As far as anti-

inflammatories, I have been taking 10000 to 12000 gdu of bromelain

for the last 3 months. Also taking 975 mg aspirin with doxy in the

morning. I have also been taking transfer factors for the last 5

months and samento for about 2 months, but don't feel like the

samento is doing anything.

> > I am trying to figure out if I may be well, with only

nerve/tissue

> > damage left behind after the infection.

> >

> > The focal infection was in my sinuses, eyes, septum, ears, and

> jaw.

> > It has now been 32 months. I had severe CFS with toxic malaise

for

> > approximately 22 months. Multiple tissue (from sinus surgery)

and

> > phlem cultures never grew cell wall organisms with the exception

> of

> > epidermidis (coag neg. staph). I had lots of vancomycin,

> ceftriaxon,

> > empenem, ampicillin/clauv. acid, and clindamycin IV's to take

care

> > of the coag neg staph or any other cw organisms. I was however

> myco

> > positive (blood test), with high antibody titers, but PCR

negative

> > as I was on abx.

> >

> > Toxic malaise has been really going away the last few months. I

> have

> > been on flagyl, macrolides and tetracyclines for the last 16

> months

> > (approximately in that order). I have also done some pulsing.

With

> > the last 3 months of doxy, I have noticed that the toxic malaise

> has

> > gone from about 20% of it's greatest intensity to almost zero

> (with

> > the exception of a very subtle wave during a stressful moment,

ie.

> > noise, excitement, etc.). I still get tired fast with excertion

> vs.

> > tired all the time. I am having near normal moments with the

> > exception of local pain in my head at all the focal points. I

> wonder

> > (and this is my question), might the bugs be dead or very near

> > death, leaving behind a lot of damage (thus the local pain) that

> > will possibly take a long long time to go away, or, is the local

> > pain likely cwd that are still there?? Does anyone have any

> > experience with this phase of the disease process? Any insight

or

> > opinions would be greatly appreciated. I am trying to figure out

> > what tone to set for my next doctor appt. in 16 days.

> >

> > Thanks,

[Guest guest]

I also have taken glutathione/atp shots for about 8 or 9 months.

> > I am trying to figure out if I may be well, with only

nerve/tissue

> > damage left behind after the infection.

> >

> > The focal infection was in my sinuses, eyes, septum, ears, and

> jaw.

> > It has now been 32 months. I had severe CFS with toxic malaise

for

> > approximately 22 months. Multiple tissue (from sinus surgery)

and

> > phlem cultures never grew cell wall organisms with the exception

> of

> > epidermidis (coag neg. staph). I had lots of vancomycin,

> ceftriaxon,

> > empenem, ampicillin/clauv. acid, and clindamycin IV's to take

care

> > of the coag neg staph or any other cw organisms. I was however

> myco

> > positive (blood test), with high antibody titers, but PCR

negative

> > as I was on abx.

> >

> > Toxic malaise has been really going away the last few months. I

> have

> > been on flagyl, macrolides and tetracyclines for the last 16

> months

> > (approximately in that order). I have also done some pulsing.

With

> > the last 3 months of doxy, I have noticed that the toxic malaise

> has

> > gone from about 20% of it's greatest intensity to almost zero

> (with

> > the exception of a very subtle wave during a stressful moment,

ie.

> > noise, excitement, etc.). I still get tired fast with excertion

> vs.

> > tired all the time. I am having near normal moments with the

> > exception of local pain in my head at all the focal points. I

> wonder

> > (and this is my question), might the bugs be dead or very near

> > death, leaving behind a lot of damage (thus the local pain) that

> > will possibly take a long long time to go away, or, is the local

> > pain likely cwd that are still there?? Does anyone have any

> > experience with this phase of the disease process? Any insight

or

> > opinions would be greatly appreciated. I am trying to figure out

> > what tone to set for my next doctor appt. in 16 days.

> >

> > Thanks,

[Guest guest]

The coag neg staph was only positive on cultures from phlem. All of

the tissue cultures were negative. One can only conclude therefore

that systemically I was coag neg staph negative. My infection is

systemic, therefore the culprit was indeed cwd (no cw organisms grew

and I would only respond to psi abx. And, I had a lot of cultures

and none of them grew Pseudomonas, a very easy organism to grow. I

have a tendency to trust the testing that WAS performed. The problem

is getting them performed. Like I was myco pos., but it did not show

up until I found a doctor that actually believed it could be the

cause of my disease or that it even existed as a formidable pathogen

in disease process at all.

> > > I am trying to figure out if I may be well, with only

> nerve/tissue

> > > damage left behind after the infection.

> > >

> > > The focal infection was in my sinuses, eyes, septum, ears, and

> > jaw.

> > > It has now been 32 months. I had severe CFS with toxic malaise

> for

> > > approximately 22 months. Multiple tissue (from sinus surgery)

> and

> > > phlem cultures never grew cell wall organisms with the

exception

> > of

> > > epidermidis (coag neg. staph). I had lots of vancomycin,

> > ceftriaxon,

> > > empenem, ampicillin/clauv. acid, and clindamycin IV's to take

> care

> > > of the coag neg staph or any other cw organisms. I was however

> > myco

> > > positive (blood test), with high antibody titers, but PCR

> negative

> > > as I was on abx.

> > >

> > > Toxic malaise has been really going away the last few months.

I

> > have

> > > been on flagyl, macrolides and tetracyclines for the last 16

> > months

> > > (approximately in that order). I have also done some pulsing.

> With

> > > the last 3 months of doxy, I have noticed that the toxic

malaise

> > has

> > > gone from about 20% of it's greatest intensity to almost zero

> > (with

> > > the exception of a very subtle wave during a stressful moment,

> ie.

> > > noise, excitement, etc.). I still get tired fast with

excertion

> > vs.

> > > tired all the time. I am having near normal moments with the

> > > exception of local pain in my head at all the focal points. I

> > wonder

> > > (and this is my question), might the bugs be dead or very near

> > > death, leaving behind a lot of damage (thus the local pain)

that

> > > will possibly take a long long time to go away, or, is the

local

> > > pain likely cwd that are still there?? Does anyone have any

> > > experience with this phase of the disease process? Any insight

> or

> > > opinions would be greatly appreciated. I am trying to figure

out

> > > what tone to set for my next doctor appt. in 16 days.

> > >

> > > Thanks,

[Guest guest]

Thanks for the information. I'm really bummed though, I was hoping

to completely eradicate them.

> > I am trying to figure out if I may be well, with only

nerve/tissue

> > damage left behind after the infection.

> >

> > The focal infection was in my sinuses, eyes, septum, ears, and

> jaw.

> > It has now been 32 months. I had severe CFS with toxic malaise

for

> > approximately 22 months. Multiple tissue (from sinus surgery)

and

> > phlem cultures never grew cell wall organisms with the exception

> of

> > epidermidis (coag neg. staph). I had lots of vancomycin,

> ceftriaxon,

> > empenem, ampicillin/clauv. acid, and clindamycin IV's to take

care

> > of the coag neg staph or any other cw organisms. I was however

> myco

> > positive (blood test), with high antibody titers, but PCR

negative

> > as I was on abx.

> >

> > Toxic malaise has been really going away the last few months. I

> have

> > been on flagyl, macrolides and tetracyclines for the last 16

> months

> > (approximately in that order). I have also done some pulsing.

With

> > the last 3 months of doxy, I have noticed that the toxic malaise

> has

> > gone from about 20% of it's greatest intensity to almost zero

> (with

> > the exception of a very subtle wave during a stressful moment,

ie.

> > noise, excitement, etc.). I still get tired fast with excertion

> vs.

> > tired all the time. I am having near normal moments with the

> > exception of local pain in my head at all the focal points. I

> wonder

> > (and this is my question), might the bugs be dead or very near

> > death, leaving behind a lot of damage (thus the local pain) that

> > will possibly take a long long time to go away, or, is the local

> > pain likely cwd that are still there?? Does anyone have any

> > experience with this phase of the disease process? Any insight

or

> > opinions would be greatly appreciated. I am trying to figure out

> > what tone to set for my next doctor appt. in 16 days.

> >

> > Thanks,

[Guest guest]

DAvid

I have been down this path 100 plus times with people

s cultures. When you use vanco it's good for a week it tells you on

the vials the instructions are clear when attacking coag neg staph

use gentamicin, rifampin it fails on it's own.

Actually my friend that drops in occasionally was givem vanco

recently and I already knew from her cultures this therapy won't

bare fruit and it has made her worse.

I would watch my coag neg sinus swab growth before deciding on

chasing a dead duck diagnosis.doxy and tetracycline and mino alway's

kill coag neg staph although they never really eradicate the

problem... So you may be confused with thinking your fixing cell

wall deficient forms. The other myth is that when I do swabs I

nnever bother to stain them until I grow bacteria because early in

the piece I discovered nothing shows until a cell wall develops.

Also david labs need a little direction as the criteria they work

with ain't good for autoimmune ilnesses.Also a heart surgeon doctor

a frioend visited recently mentioned this without being queried when

he said most labs don't get it they throw out coag neg staph. when

lab work was brought up.

> > > > I am trying to figure out if I may be well, with only

> > nerve/tissue

> > > > damage left behind after the infection.

> > > >

> > > > The focal infection was in my sinuses, eyes, septum, ears,

and

> > > jaw.

> > > > It has now been 32 months. I had severe CFS with toxic

malaise

> > for

> > > > approximately 22 months. Multiple tissue (from sinus

surgery)

> > and

> > > > phlem cultures never grew cell wall organisms with the

> exception

> > > of

> > > > epidermidis (coag neg. staph). I had lots of vancomycin,

> > > ceftriaxon,

> > > > empenem, ampicillin/clauv. acid, and clindamycin IV's to

take

> > care

> > > > of the coag neg staph or any other cw organisms. I was

however

> > > myco

> > > > positive (blood test), with high antibody titers, but PCR

> > negative

> > > > as I was on abx.

> > > >

> > > > Toxic malaise has been really going away the last few

months.

> I

> > > have

> > > > been on flagyl, macrolides and tetracyclines for the last 16

> > > months

> > > > (approximately in that order). I have also done some

pulsing.

> > With

> > > > the last 3 months of doxy, I have noticed that the toxic

> malaise

> > > has

> > > > gone from about 20% of it's greatest intensity to almost

zero

> > > (with

> > > > the exception of a very subtle wave during a stressful

moment,

> > ie.

> > > > noise, excitement, etc.). I still get tired fast with

> excertion

> > > vs.

> > > > tired all the time. I am having near normal moments with the

> > > > exception of local pain in my head at all the focal points.

I

> > > wonder

> > > > (and this is my question), might the bugs be dead or very

near

> > > > death, leaving behind a lot of damage (thus the local pain)

> that

> > > > will possibly take a long long time to go away, or, is the

> local

> > > > pain likely cwd that are still there?? Does anyone have any

> > > > experience with this phase of the disease process? Any

insight

> > or

> > > > opinions would be greatly appreciated. I am trying to figure

> out

> > > > what tone to set for my next doctor appt. in 16 days.

> > > >

> > > > Thanks,

[Guest guest]

Interesting possibility. What about vanco and unasyn or vanco and

empenem as dual therapy?

> > > > > I am trying to figure out if I may be well, with only

> > > nerve/tissue

> > > > > damage left behind after the infection.

> > > > >

> > > > > The focal infection was in my sinuses, eyes, septum, ears,

> and

> > > > jaw.

> > > > > It has now been 32 months. I had severe CFS with toxic

> malaise

> > > for

> > > > > approximately 22 months. Multiple tissue (from sinus

> surgery)

> > > and

> > > > > phlem cultures never grew cell wall organisms with the

> > exception

> > > > of

> > > > > epidermidis (coag neg. staph). I had lots of vancomycin,

> > > > ceftriaxon,

> > > > > empenem, ampicillin/clauv. acid, and clindamycin IV's to

> take

> > > care

> > > > > of the coag neg staph or any other cw organisms. I was

> however

> > > > myco

> > > > > positive (blood test), with high antibody titers, but PCR

> > > negative

> > > > > as I was on abx.

> > > > >

> > > > > Toxic malaise has been really going away the last few

> months.

> > I

> > > > have

> > > > > been on flagyl, macrolides and tetracyclines for the last

16

> > > > months

> > > > > (approximately in that order). I have also done some

> pulsing.

> > > With

> > > > > the last 3 months of doxy, I have noticed that the toxic

> > malaise

> > > > has

> > > > > gone from about 20% of it's greatest intensity to almost

> zero

> > > > (with

> > > > > the exception of a very subtle wave during a stressful

> moment,

> > > ie.

> > > > > noise, excitement, etc.). I still get tired fast with

> > excertion

> > > > vs.

> > > > > tired all the time. I am having near normal moments with

the

> > > > > exception of local pain in my head at all the focal

points.

> I

> > > > wonder

> > > > > (and this is my question), might the bugs be dead or very

> near

> > > > > death, leaving behind a lot of damage (thus the local

pain)

> > that

> > > > > will possibly take a long long time to go away, or, is the

> > local

> > > > > pain likely cwd that are still there?? Does anyone have

any

> > > > > experience with this phase of the disease process? Any

> insight

> > > or

> > > > > opinions would be greatly appreciated. I am trying to

figure

> > out

> > > > > what tone to set for my next doctor appt. in 16 days.

> > > > >

> > > > > Thanks,

[Guest guest]

I would use culture swabs, sinus, and watch for antimicrobial

patterns and also watch for growth, you would be silly to pull up

therapy if your having heavy growth coag neg staph. The combo's are

definately something to consider because myself and tarello know

full well that vanco isn't going to fix this. The other problem is

the literature on my vials made it clear cut another area of pub med

that would lead you astray is believeing that vanco can cut thru

sinus bacteria. I feel penny knows enough people that have been on

vanco, it definately wins votes with many, but doesn't complete the

job.

> > > > > > I am trying to figure out if I may be well, with only

> > > > nerve/tissue

> > > > > > damage left behind after the infection.

> > > > > >

> > > > > > The focal infection was in my sinuses, eyes, septum,

ears,

> > and

> > > > > jaw.

> > > > > > It has now been 32 months. I had severe CFS with toxic

> > malaise

> > > > for

> > > > > > approximately 22 months. Multiple tissue (from sinus

> > surgery)

> > > > and

> > > > > > phlem cultures never grew cell wall organisms with the

> > > exception

> > > > > of

> > > > > > epidermidis (coag neg. staph). I had lots of vancomycin,

> > > > > ceftriaxon,

> > > > > > empenem, ampicillin/clauv. acid, and clindamycin IV's to

> > take

> > > > care

> > > > > > of the coag neg staph or any other cw organisms. I was

> > however

> > > > > myco

> > > > > > positive (blood test), with high antibody titers, but

PCR

> > > > negative

> > > > > > as I was on abx.

> > > > > >

> > > > > > Toxic malaise has been really going away the last few

> > months.

> > > I

> > > > > have

> > > > > > been on flagyl, macrolides and tetracyclines for the

last

> 16

> > > > > months

> > > > > > (approximately in that order). I have also done some

> > pulsing.

> > > > With

> > > > > > the last 3 months of doxy, I have noticed that the toxic

> > > malaise

> > > > > has

> > > > > > gone from about 20% of it's greatest intensity to almost

> > zero

> > > > > (with

> > > > > > the exception of a very subtle wave during a stressful

> > moment,

> > > > ie.

> > > > > > noise, excitement, etc.). I still get tired fast with

> > > excertion

> > > > > vs.

> > > > > > tired all the time. I am having near normal moments with

> the

> > > > > > exception of local pain in my head at all the focal

> points.

> > I

> > > > > wonder

> > > > > > (and this is my question), might the bugs be dead or

very

> > near

> > > > > > death, leaving behind a lot of damage (thus the local

> pain)

> > > that

> > > > > > will possibly take a long long time to go away, or, is

the

> > > local

> > > > > > pain likely cwd that are still there?? Does anyone have

> any

> > > > > > experience with this phase of the disease process? Any

> > insight

> > > > or

> > > > > > opinions would be greatly appreciated. I am trying to

> figure

> > > out

> > > > > > what tone to set for my next doctor appt. in 16 days.

> > > > > >

> > > > > > Thanks,