Re: What is penicillin VK doing?

[Guest guest]

Geez a

That is such a wank of a theory..Your 3 grams of penicillin are

fixing your glutamate toxicity????Imagine the hospitals that are time

and time again using 20 grams of IV penicillin every day to fix

meningitis(penicillin is a major drug used in treating meningitis and

the preffered treatment)..what, they have all got it wrong? there

supposedly fixing glutamate toxicity?

a you really need a shrink at this time if your believing your

meningitis type symptoms are all about glutamate.

tony

>

> Tony and Matt,

>

> So far since I started the penicillin VK on Tuesday morning and

took 3 grams

> a day my head ache decreased amazingly even on Tuesday. This would

SEEM to

> be the effect of reducing glutamate as I doubt there would be a

bacteria

> die-off that quickly. But I am just speculating. This is the first

time in

> 16 months I have strung 5 days of almost headache free time

together.

>

> I upped the Lyrica on Thursday night to 150 mg, but the headache

had already

> cleared for 2 days prior to that. Thursday evening it got somewhat

bad

> again, thus I decided to increase the Lyrica. I've been on 75 mg of

Lyrica

> every 12 hours, but this did NOT relieve the headache, only

temporarily

> cleared the symptoms until the Lyrica wore off, and some days it

didn't even

> do that - bad days.

>

> a

>

> Matt

> I realised along time ago that the literature, that your so big on,

> isn't worth the paper it's written on most of the time.I can't

> really see anyone putting in penicillin and it having a reduction

in

> toxicity not an effect on the trillion organisms that are part of

the

> human body.

>

[Guest guest]

a, Haven't you ever had a sinus infection before? If you take the right abx it knocks the infection back fast and your symptoms, which usually include headache, disappear almost immediately! This happens to all kinds of infections, kids with ear infections, sinus infections, it happens to everybody. The trick, especially with us, is clearing the entrenched infection for good rather than just knocking it back. pennya Carnes <pj7@...> wrote: Tony and Matt, So far since I started the penicillin VK on Tuesday morning and took 3 grams a day my head ache decreased amazingly even on Tuesday. This would SEEM to be the effect of reducing glutamate as I doubt there would be a bacteria die-off that quickly. But I am just speculating. This is the first time in 16 months I have strung 5 days of almost headache free time together. I upped the Lyrica on Thursday night to 150 mg, but the headache had already cleared for 2 days prior to that. Thursday evening it got

somewhat bad again, thus I decided to increase the Lyrica. I've been on 75 mg of Lyrica every 12 hours, but this did NOT relieve the headache, only temporarily cleared the symptoms until the Lyrica wore off, and some days it didn't even do that - bad days. a MattI realised along time ago that the literature, that your so big on, isn't worth the paper it's written on most of the time.I can't really see anyone putting in penicillin and it having a reduction in toxicity not an effect on the trillion organisms that are part of the human body.

[Guest guest]

Hi Penny,

Actually, no, I have never had a serious sinus infection. I had never

taken any antibiotics for anything except a breast infection when I

was breastfeeding my kids. I only started taking antibiotics in 1996

after I was diagnosed with mycoplasma. I know that the professional

singers I used to sing with would go from SC to New York city to a

specialist who would prescribe 4 weeks of antibiotics for their sinus

infections. They liked this guy because his protocol actually cured

the sinus trouble. Currently for the past 16 months I have no signs of

any sinus trouble. I did have thrush at the time my throat was injured

by the laryngoscope or whatever you call it.

a

>

> a,

>

> Haven't you ever had a sinus infection before? If you take the

right abx it knocks the infection back fast and your symptoms, which

usually include headache, disappear almost immediately! This happens

to all kinds of infections, kids with ear infections, sinus

infections, it happens to everybody. The trick, especially with us,

is clearing the entrenched infection for good rather than just

knocking it back.

>

> penny

>

[Guest guest]

I thought people did not get immediate relief from symptoms on an

antibiotic. I am talking about relief in 2 hours, not 24. Of

course " people " assume their improvement is due to the antibiotic

killing germs. Only scientists question this assumption. Matt

Phagelod made a good point: if the penicillin VK is reducing

glutamate levels in the brain IT WILL ONLY WORK FOR ABOUT 2 WEEKS.

I've been tested by lumbar puncture for every bacteria mentioned in

your research article below. IT'S NOT THAT I DON'T THINK THIS IS AN

OCCULT INFECTION I DON'T HAVE A LAB IN MY BASEMENT TO GROW CULTURES.

I JUST HAD 10 VIALS OF BLOOD DRAWN THIS MORNING TO TEST FOR MORE

INFECTIONS.

Besides, I don't even have a basement. Nobody in Vegas wants to dig

out the rock to build one, just like no one here is willing to grow

cultures for obscure bacteria in people's spinal fluid.

a Carnes

relatively headache free and brainfog free for NOW.

> So, okay, that's great. But do you understand my point? If you get

immediate relief of symptoms that's a typical & common reaction to an

antibiotic knocking an infection way back. People who get this kind

of relief assume just that, not that it's some kind of glutamate

thing.

>

> I have a hard time following your logic. You have so many

screaming signs of a chronic sinus infection and yet you always seem

to try to find some other answer for it. I just don't get it.

>

> Maybe this will get your attention... if you have an infection of

the small sphenoid sinus in the back of your head near your pituitary

gland and it goes untreated for a long time, it can kill you.

>

> Here's something else to ponder. The dural venous (cranial)

sinuses are found between layers of dura mater in the brain. If they

become septic you will most likely die; if the infection just lays

low, who knows how many weird diseases might be created? One that

comes to mind, cerebal palsy...

>

> Septic thrombosis of the dural venous sinuses. Southwick FS,

EP Jr, Swartz MN.

> From 1940 to 1984, 19 cases of septic dural-sinus thrombosis have

been diagnosed at the Massachusetts General Hospital, and some 136

cases have been reported from other institutions. Septic thrombosis

most frequently involves the cavernous sinuses (96 cases). Facial or

sphenoid air sinus infection often precede cavernous-sinus disease.

In addition to the classical signs of proptosis, chemosis, and

oculomotor paralysis, isolated sixth-nerve palsy and hypo- or

hyperesthesia of the fifth nerve may be found. The major pathogens

associated with cavernous-sinus infection include Staphylococcus

aureus, other gram-positive organisms, and anaerobes. Septic lateral-

sinus thrombosis (64 cases) is almost exclusively a complication of

otitis media and/or mastoid infection. Organisms causing this

infection include Proteus species, Escherichia coli, S. aureus, and

anaerobes. Septic thrombosis of the superior sagittal sinus (23

cases) most frequently accompanies bacterial meningitis or

> air sinus infection. Causative organisms include Streptococcus

pneumoniae, S. aureus, other streptococci, and Klebsiella species.

Because septic dural-sinus thrombosis is rare, this disease is

frequently misdiagnosed. Evaluation should include lumbar puncture,

air sinus films, and computed tomographic scan with contrast. Other

helpful diagnostic tests may include carotid angiography, and dynamic

brain scan. Orbital venography is the most definitive study in cases

of chronic cavernous-sinus thrombosis. Therapy should include

intravenous antibiotics and early surgical drainage of purulent

exudate in the air sinuses or mastoid regions. Retrospective analysis

suggests that treatment with heparin may reduce mortality in

carefully selected cases of septic cavernous-sinus thrombosis.

Anticoagulation is not recommended in other forms of septic dural-

sinus thrombosis. Mortality in the antibiotic-era remains high,

particularly in patients with septic thrombosis of the cavernous

> (30%) and superior sagittal (78%) sinuses.

> PMID: 3512953 [PubMed - indexed for MEDLINE]

>

> http://www.ncbi.nlm.nih.gov/sites/entrez?

cmd=Retrieve & db=PubMed & list_uids=3512953 & dopt=AbstractPlus

>

[Guest guest]

Penny

Remember that it's not the one bacteria that is causing the problem,

it's the switching them all on and off in harmony is what these drugs

can also achieve....But a only had thrush which is also another

guess.. thrush and pseudonomas are really only discovered in lab

tests ..

I would also think that any Infectious disease doctor would throw you

out his office if you tried telling him to give you penicillin for

glutamate toxicity..I'm sure it wouyld affect bacterial toxicity a

whole lot more when succesfully treating bugs..Remember it's the

toxins that hurt you not the bugs..

> I thought people did not get immediate relief from

symptoms on an

> antibiotic. I am talking about relief in 2 hours, not 24. Of

> course " people " assume their improvement is due to the antibiotic

> killing germs. Only scientists question this assumption. Matt

> Phagelod made a good point: if the penicillin VK is reducing

> glutamate levels in the brain IT WILL ONLY WORK FOR ABOUT 2 WEEKS.

>

> I've been tested by lumbar puncture for every bacteria mentioned in

> your research article below. IT'S NOT THAT I DON'T THINK THIS IS AN

> OCCULT INFECTION I DON'T HAVE A LAB IN MY BASEMENT TO GROW

CULTURES.

> I JUST HAD 10 VIALS OF BLOOD DRAWN THIS MORNING TO TEST FOR MORE

> INFECTIONS.

>

> Besides, I don't even have a basement. Nobody in Vegas wants to dig

> out the rock to build one, just like no one here is willing to grow

> cultures for obscure bacteria in people's spinal fluid.

>

> a Carnes

> relatively headache free and brainfog free for NOW.

>

> > So, okay, that's great. But do you understand my point? If you

get

> immediate relief of symptoms that's a typical & common reaction to

an

> antibiotic knocking an infection way back. People who get this kind

> of relief assume just that, not that it's some kind of glutamate

> thing.

> >

> > I have a hard time following your logic. You have so many

> screaming signs of a chronic sinus infection and yet you always

seem

> to try to find some other answer for it. I just don't get it.

> >

> > Maybe this will get your attention... if you have an infection of

> the small sphenoid sinus in the back of your head near your

pituitary

> gland and it goes untreated for a long time, it can kill you.

> >

> > Here's something else to ponder. The dural venous (cranial)

> sinuses are found between layers of dura mater in the brain. If

they

> become septic you will most likely die; if the infection just lays

> low, who knows how many weird diseases might be created? One that

> comes to mind, cerebal palsy...

> >

> > Septic thrombosis of the dural venous sinuses. Southwick FS,

> EP Jr, Swartz MN.

> > From 1940 to 1984, 19 cases of septic dural-sinus thrombosis have

> been diagnosed at the Massachusetts General Hospital, and some 136

> cases have been reported from other institutions. Septic thrombosis

> most frequently involves the cavernous sinuses (96 cases). Facial

or

> sphenoid air sinus infection often precede cavernous-sinus disease.

> In addition to the classical signs of proptosis, chemosis, and

> oculomotor paralysis, isolated sixth-nerve palsy and hypo- or

> hyperesthesia of the fifth nerve may be found. The major pathogens

> associated with cavernous-sinus infection include Staphylococcus

> aureus, other gram-positive organisms, and anaerobes. Septic

lateral-

> sinus thrombosis (64 cases) is almost exclusively a complication of

> otitis media and/or mastoid infection. Organisms causing this

> infection include Proteus species, Escherichia coli, S. aureus, and

> anaerobes. Septic thrombosis of the superior sagittal sinus (23

> cases) most frequently accompanies bacterial meningitis or

> > air sinus infection. Causative organisms include Streptococcus

> pneumoniae, S. aureus, other streptococci, and Klebsiella species.

> Because septic dural-sinus thrombosis is rare, this disease is

> frequently misdiagnosed. Evaluation should include lumbar puncture,

> air sinus films, and computed tomographic scan with contrast. Other

> helpful diagnostic tests may include carotid angiography, and

dynamic

> brain scan. Orbital venography is the most definitive study in

cases

> of chronic cavernous-sinus thrombosis. Therapy should include

> intravenous antibiotics and early surgical drainage of purulent

> exudate in the air sinuses or mastoid regions. Retrospective

analysis

> suggests that treatment with heparin may reduce mortality in

> carefully selected cases of septic cavernous-sinus thrombosis.

> Anticoagulation is not recommended in other forms of septic dural-

> sinus thrombosis. Mortality in the antibiotic-era remains high,

> particularly in patients with septic thrombosis of the cavernous

> > (30%) and superior sagittal (78%) sinuses.

> > PMID: 3512953 [PubMed - indexed for MEDLINE]

> >

> > http://www.ncbi.nlm.nih.gov/sites/entrez?

> cmd=Retrieve & db=PubMed & list_uids=3512953 & dopt=AbstractPlus

> >

>

[Guest guest]

My two kids literally never had an ear infection in their lives. My

doc back then used to tell me he had never seen such healthy kids -

strange that one of them now tests positive for Lyme, and we don't

know about the other.

But back to the penicillin - I'm not the one who figured I was not

infected anymore. But it does seem odd to have the headache clear up

in about 2 hours. I could see 24 hrs, but not two. But then the whole

reason I asked for penicillin was because my headache had cleared up

on a lower dose of it in about 5-7 days before.

No, I did not ask for penicillin to reduce glutamate. I asked for it

because it seemed to be the only thing that cleared the headaches in

the past 16 months. The infectious disease doctor refused to

prescribe it without knowing that I was infected with anything. So I

just got a refill on the stuff I already had and increased the dose.

a

>

> I'm surprised. You've never had a child with an ear infection who

is almost immediately better when given amoxycillin? You have a child

screaming in pain all day and 2 hours after taking a pill, they're

playing like they were never sick. I'm not disputing that glutamate

could be involved somehow, but it seems you're always looking for the

exotic answer rather than the obvious. Maybe your headache's gone

because you're taking penicillin. And if you don't take enough or mix

it with another abx, then in a couple of weeks or a couple of months,

you may very well see the symptoms return. That's what abx resistance

does.

>

> I've got a worker here right now who has an obvious sinus

infection going on. And a massive headache. He want's to " work the

virus out of his system " and not take any meds. I can guarantee you

that if he took the right abx, he'd be feeling a thousand percent

better in a few hours. But if he's lucky, this will take days to

start to improve, and by the looks of it we could be talking weeks. I

just hope he does eventually clear it somehow. Not do what I did 20

years ago and ignore it until it " went away " .

>

> penny

>

> pjeanneus <pj7@...> wrote:

> I thought people did not get immediate relief from

symptoms on an

> antibiotic. I am talking about relief in 2 hours, not 24. Of

> course " people " assume their improvement is due to the antibiotic

> killing germs. Only scientists question this assumption. Matt

> Phagelod made a good point: if the penicillin VK is reducing

> glutamate levels in the brain IT WILL ONLY WORK FOR ABOUT 2 WEEKS.

>

> I've been tested by lumbar puncture for every bacteria mentioned in

> your research article below. IT'S NOT THAT I DON'T THINK THIS IS AN

> OCCULT INFECTION I DON'T HAVE A LAB IN MY BASEMENT TO GROW

CULTURES.

> I JUST HAD 10 VIALS OF BLOOD DRAWN THIS MORNING TO TEST FOR MORE

> INFECTIONS.

>

> Besides, I don't even have a basement. Nobody in Vegas wants to dig

> out the rock to build one, just like no one here is willing to grow

> cultures for obscure bacteria in people's spinal fluid.

>

> a Carnes

[Guest guest]

Tony, for what it is worth let me just correct a few things. I never

thought all I had was thrush. No one gets vestibular nerve damage,

nystagmus, and eventually disturbed vision from thrush that cleared up

in a few days.

I had a big fight with the infectious disease specialist because I

tried to convince him I had some sort of chronic infection. He refused

to prescribe the penicillin VK. I never suggested it would lower

glutamate. I might suggest this to a neurologist but not an infectious

disease specialist. Besides I didn't know it at the time.

But let me try to figure out what you are suggesting here. Are you

saying that the reason my headache disappeared in about 2 hours was

because the penicillin VK turned all the infections off at once,

stopping them from producing any toxins, thus I felt good and normal

for the first time in months - since the last time I took penicillin

VK which took about 5 days to kick in at all?

I think it makes more sense that a higher dose of penicillin lowered

glutamate levels quickly making me feel better and that I probably

will gradually get the headache back even on penicillin as the

glutamate levels slowly rise again.

Meanwhile at that point I will double my dose of Lyrica because I

simply cannot live with this level of pain and brain dysfunction

anymore. It is too hard not being able to argue with you. I miss that

so much.

a

>

> Penny

> Remember that it's not the one bacteria that is causing the problem,

> it's the switching them all on and off in harmony is what these

drugs

> can also achieve....But a only had thrush which is also another

> guess.. thrush and pseudonomas are really only discovered in lab

> tests ..

> I would also think that any Infectious disease doctor would throw

you

> out his office if you tried telling him to give you penicillin for

> glutamate toxicity..I'm sure it wouyld affect bacterial toxicity a

> whole lot more when succesfully treating bugs..Remember it's the

> toxins that hurt you not the bugs..

[Guest guest]

a

Do you not understand that in meningitis, or in your case meningitis

LIKE SYMPTOMS, higher doses of penicillin are used to attack the HUGE

INFECTION. You have just taken an amount closer to what's expected in

a serious infection and your noticing higher improvement, then you

through in some sh..t about glutamate levels..You really are a pain

in the backside with the logic you keep throwing up?

In medical circles if you don't go into a doctor with a very clear

scientific angle- you should only expect failure IMO..Some paper,that

points to some glutamate level reduction...ain't good science to a

medical person who treats people with massive headache, light

intolerance, neck stiffness, lumbar punctures with higher doses of

drugs like penicillin..

I think another point that we have to make for the UMPTEENTH time

for everyone else's sake- is that you should know before hand the

crap you'll be dealt up if you don't do your homework with doctors...

>

> Tony, for what it is worth let me just correct a few things. I

never

> thought all I had was thrush. No one gets vestibular nerve damage,

> nystagmus, and eventually disturbed vision from thrush that cleared

up

> in a few days.

>

> I had a big fight with the infectious disease specialist because I

> tried to convince him I had some sort of chronic infection. He

refused

> to prescribe the penicillin VK. I never suggested it would lower

> glutamate. I might suggest this to a neurologist but not an

infectious

> disease specialist. Besides I didn't know it at the time.

>

> But let me try to figure out what you are suggesting here. Are you

> saying that the reason my headache disappeared in about 2 hours was

> because the penicillin VK turned all the infections off at once,

> stopping them from producing any toxins, thus I felt good and

normal

> for the first time in months - since the last time I took

penicillin

> VK which took about 5 days to kick in at all?

>

> I think it makes more sense that a higher dose of penicillin

lowered

> glutamate levels quickly making me feel better and that I probably

> will gradually get the headache back even on penicillin as the

> glutamate levels slowly rise again.

>

> Meanwhile at that point I will double my dose of Lyrica because I

> simply cannot live with this level of pain and brain dysfunction

> anymore. It is too hard not being able to argue with you. I miss

that

> so much.

>

> a

>

>

> >

> > Penny

> > Remember that it's not the one bacteria that is causing the

problem,

> > it's the switching them all on and off in harmony is what these

> drugs

> > can also achieve....But a only had thrush which is also

another

> > guess.. thrush and pseudonomas are really only discovered in

lab

> > tests ..

> > I would also think that any Infectious disease doctor would throw

> you

> > out his office if you tried telling him to give you penicillin

for

> > glutamate toxicity..I'm sure it wouyld affect bacterial toxicity

a

> > whole lot more when succesfully treating bugs..Remember it's the

> > toxins that hurt you not the bugs..

>

[Guest guest]

******When a drug works for you, build on that, don't ignore it

because of some preconditioned notions you have about your illness.***

Penny it doesn't get any clearer than that.

Thanks Tony

>

> Tony and Matt,

>

> So far since I started the penicillin VK on Tuesday morning and

took 3 grams

> a day my head ache decreased amazingly even on Tuesday. This would

SEEM to

> be the effect of reducing glutamate as I doubt there would be a

bacteria

> die-off that quickly. But I am just speculating. This is the first

time in

> 16 months I have strung 5 days of almost headache free time

together.

>

> I upped the Lyrica on Thursday night to 150 mg, but the headache

had already

> cleared for 2 days prior to that. Thursday evening it got somewhat

bad

> again, thus I decided to increase the Lyrica. I've been on 75 mg of

Lyrica

> every 12 hours, but this did NOT relieve the headache, only

temporarily

> cleared the symptoms until the Lyrica wore off, and some days it

didn't even

> do that - bad days.

>

> a

>

> Matt

> I realised along time ago that the literature, that your so big on,

> isn't worth the paper it's written on most of the time.I can't

> really see anyone putting in penicillin and it having a reduction

in

> toxicity not an effect on the trillion organisms that are part of

the

> human body.

>

[Guest guest]

Tony and Penny,

You are the ones who have preconditioned notions about my illness. I

am beginning to realize that my illness may or may not be ongoing

infection.

In any case I will be thrilled if the penicillin VK at 3 grams a day

works. I seriously doubt it will. At least my doubt will remove the

placebo effect.

If the penicillin does not work I will up the dose of Lyrica I am on.

You seem to think I have options. I do not. I have no infectious

disease specialist I can afford to see, and I am not at all certain

this situation fits the infection scenario anyway. I saw a highly

recommended neuro-opthamologist who treats Lyme patients agressively.

I tend to think he is right that I need to be looking at other

possibilities besides infection.

So I shall continue another couple of weeks and see where the road

leads without any preconditioned notions attached.

a Carnes

>

> ******When a drug works for you, build on that, don't ignore it

> because of some preconditioned notions you have about your

illness.***

> Penny it doesn't get any clearer than that.

> Thanks Tony

>

>

>

>

> >

> > Tony and Matt,

> >

> > So far since I started the penicillin VK on Tuesday morning and

> took 3 grams

> > a day my head ache decreased amazingly even on Tuesday. This

would

> SEEM to

> > be the effect of reducing glutamate as I doubt there would be a

> bacteria

> > die-off that quickly. But I am just speculating. This is the

first

> time in

> > 16 months I have strung 5 days of almost headache free time

> together.

> >

> > I upped the Lyrica on Thursday night to 150 mg, but the headache

> had already

> > cleared for 2 days prior to that. Thursday evening it got

somewhat

> bad

> > again, thus I decided to increase the Lyrica. I've been on 75 mg

of

> Lyrica

> > every 12 hours, but this did NOT relieve the headache, only

> temporarily

> > cleared the symptoms until the Lyrica wore off, and some days it

> didn't even

> > do that - bad days.

> >

> > a

> >

> > Matt

> > I realised along time ago that the literature, that your so big

on,

> > isn't worth the paper it's written on most of the time.I can't

> > really see anyone putting in penicillin and it having a reduction

> in

> > toxicity not an effect on the trillion organisms that are part of

> the

> > human body.

> >

>

[Guest guest]

a

Once again you've thrown the baby out with the bath

water..Fevereshly we emphasised how important carefull scanning for

infection was and everything else wasn't going to deliver, but more

importantly! waste your time... not to mention get you offside with

all your follow up appointments as your scans are all clear

supposedly..

Now we have another farce that see's your efforts going into

believing some medical paper on glutamate toxicity and peniciliin's

affects on it..which by the way is totally against the grain of

everything we've understood and fought for in these

conditions..Again today chatting with another lyme person, the hard

drug protocols over many months have seen her friends go into

remission from your style of symptoms..I don't know if you read that

well with your rose coloured glasses ?

tony

> > >

> > > Tony and Matt,

> > >

> > > So far since I started the penicillin VK on Tuesday morning and

> > took 3 grams

> > > a day my head ache decreased amazingly even on Tuesday. This

> would

> > SEEM to

> > > be the effect of reducing glutamate as I doubt there would be a

> > bacteria

> > > die-off that quickly. But I am just speculating. This is the

> first

> > time in

> > > 16 months I have strung 5 days of almost headache free time

> > together.

> > >

> > > I upped the Lyrica on Thursday night to 150 mg, but the

headache

> > had already

> > > cleared for 2 days prior to that. Thursday evening it got

> somewhat

> > bad

> > > again, thus I decided to increase the Lyrica. I've been on 75

mg

> of

> > Lyrica

> > > every 12 hours, but this did NOT relieve the headache, only

> > temporarily

> > > cleared the symptoms until the Lyrica wore off, and some days

it

> > didn't even

> > > do that - bad days.

> > >

> > > a

> > >

> > > Matt

> > > I realised along time ago that the literature, that your so big

> on,

> > > isn't worth the paper it's written on most of the time.I can't

> > > really see anyone putting in penicillin and it having a

reduction

> > in

> > > toxicity not an effect on the trillion organisms that are part

of

> > the

> > > human body.

> > >

> >

>

[Guest guest]

Penny, I appreciate you and Tony. I really do. But I don't think I

have exactly the same situation as you. I realize you have clear

evidence of sinus infection and dental problems. I don't fit that

category. I think you should respect my judgement of my own head and

face including the fact that I have seen some of the better doctors in

the US when they take Medicare and my insurance.

I also have a good local doctor who will give me the antibiotics I

request. That's why I can take the penicillin VK at high dose for long

periods of time. That still doesn't mean I should.

I keep asking my same basic questions, not to be told that I am not

seeing what is right in front of me or between my two ears, but

because you and Tony have not given me enough reason for me to be

convinced it is infection. If the headache does not come back in

another 2 weeks I will figure it is treating infection, especially if

I can discontinue the Lyrica. We shall see.

I like you guys because you are forthright and honest. But I wish you

would respect my opinion as well.

You know that whatever list you get on and ask the same question you

will get their pet answer. You do realize your pet answer (which may

be correct - who knows) is infection.

I admit I don't know and still have a headache, well, I did until one

week ago. I don't care what the penicillin is fixing. I just hope it

keeps on working.

a

>

> Fine, a, but you keep asking the questions, and we keep trying

to answer based on our experience with people and situations exactly

like yours. You're not going to get me to wildly speculate when

there's an avenue right in front of you that should be considered

seriously, imo. It doesn't matter how much we put in front of you, or

what your body tells you, you keep looking for another way. It's

obvious from your responses and your questions that you don't really

pay any attention to what we've tried to share with you regarding

infection and inflammation and how to cope. But hey, it's your road to

travel. I wish you the best.

>

> penny

>

> p.s. I don't have my own personal infectious disease specialist

either. But I somehow manage to get the abx I need to keep my nastiest

symptoms in check, and to make my constant migraines almost non

existent. But what do I know?

[Guest guest]

Tony, you are not listening to what I am writing. Maybe I should

write louder. This past year I don't have anything like the years of

Lyme. My headache is NOT a classic Lyme headache. I have no other

symptoms of cfs or Lyme. The rare times the headache goes away I can

think clearly and exercise - days like today!

I never said my headache is caused by raised glutamate levels. What I

said was that I am a good guinea pig to see if the headache is

infection or a glutamate/GABA imbalance. Hey, the imbalance is most

likely caused by infection.In either case the penicillin is a good

experiment.

But I don't have other options left. None. All I can do is take the

penicillin VK at high dose for a few weeks and see what happens.

As I just wrote Penny, I think it will be rather clear that it was

infection IF I can maintain no headache while on the penicillin and

IF I can lower the Lyrica and get off it.

There is always the possibility that the headache will return even if

the cause is infection because the penicillin will not kill the

infection or it will mutate.

So what kind of scan should I get? The ones at the Amen CLinic where

I would spend a few thousand dollars I don't have for sinus symptoms

I don't have and for dental problems I don't have?

a

>

> a

> Once again you've thrown the baby out with the bath

> water..Fevereshly we emphasised how important carefull scanning

for

> infection was and everything else wasn't going to deliver, but more

> importantly! waste your time... not to mention get you offside

with

> all your follow up appointments as your scans are all clear

> supposedly..

> Now we have another farce that see's your efforts going into

> believing some medical paper on glutamate toxicity and peniciliin's

> affects on it..which by the way is totally against the grain of

> everything we've understood and fought for in these

> conditions..Again today chatting with another lyme person, the hard

> drug protocols over many months have seen her friends go into

> remission from your style of symptoms..I don't know if you read

that

> well with your rose coloured glasses ?

> tony

[Guest guest]

a

You just went thru the system for the past year and a bit and didn't

heed any advice..You went out and did things the guaranteed to fail,

spastic way. You've finally been spat out the other end, NON THE

WISER, as we kept warning..BUT NA you kept telling us how you were

hitting the high end of doctor shopping and they'd do there

thing..Well you finally arrived at the other end and you've actually

establsihed in your medical records, thru all these experts, a

situation that says patient PAULA CARNES fruit loop..years earlier my

doctor gave me a request for a scan, to which I asked- Sam are we

going to get a result from this or is this just one of those going

thru the motions scans..He already knows the outcome, as he's

experienced hundreds before, so I didn't bother...

You know the other surprising part is that you fit clearly with many

on the lyme forum and you sit there like a stunned mullet and claim

this is not part of your lyme..You even mentioned on another forum

your ilness started out as mono, something associated with your

mouth and throat..

So next time your doctor sends you off for a scan, make sure that

it's WORTH HAVING, save yourself some unnecessary X rays.

>

> Tony, you are not listening to what I am writing. Maybe I should

> write louder. This past year I don't have anything like the years

of

> Lyme. My headache is NOT a classic Lyme headache. I have no other

> symptoms of cfs or Lyme. The rare times the headache goes away I

can

> think clearly and exercise - days like today!

>

> I never said my headache is caused by raised glutamate levels. What

I

> said was that I am a good guinea pig to see if the headache is

> infection or a glutamate/GABA imbalance. Hey, the imbalance is most

> likely caused by infection.In either case the penicillin is a good

> experiment.

>

> But I don't have other options left. None. All I can do is take the

> penicillin VK at high dose for a few weeks and see what happens.

>

> As I just wrote Penny, I think it will be rather clear that it was

> infection IF I can maintain no headache while on the penicillin and

> IF I can lower the Lyrica and get off it.

>

> There is always the possibility that the headache will return even

if

> the cause is infection because the penicillin will not kill the

> infection or it will mutate.

>

> So what kind of scan should I get? The ones at the Amen CLinic

where

> I would spend a few thousand dollars I don't have for sinus

symptoms

> I don't have and for dental problems I don't have?

>

> a

>

>

> >

> > a

> > Once again you've thrown the baby out with the bath

> > water..Fevereshly we emphasised how important carefull scanning

> for

> > infection was and everything else wasn't going to deliver, but

more

> > importantly! waste your time... not to mention get you offside

> with

> > all your follow up appointments as your scans are all clear

> > supposedly..

> > Now we have another farce that see's your efforts going into

> > believing some medical paper on glutamate toxicity and

peniciliin's

> > affects on it..which by the way is totally against the grain of

> > everything we've understood and fought for in these

> > conditions..Again today chatting with another lyme person, the

hard

> > drug protocols over many months have seen her friends go into

> > remission from your style of symptoms..I don't know if you read

> that

> > well with your rose coloured glasses ?

> > tony

>

[Guest guest]

Hi guys, esp. Tony and Penny. I am getting tired of a " bashing " .

For whatever reasons, I would guess humility, she does not come across

on this list as being the smart researcher she really is. I've known

her on lists for many years and she has been one of my gurus. If she

is doing or suggesting something, then I have put faith in her

opinions and experiences. She has helped me a lot!!! Nothing is ever

cut and dried. What works for one may not be the be all, end all for

everyone. And we are all SO different. While I really appreciate this

list, sometimes it just deteriorates to judgment and disrespect. So

FWIW, respectfully, Hope

[Guest guest]

But Hope,

a hits the list constantly for advice..And the most important

aspect IMO, is time and time again we warn people don't just go thru

the rigmarol of testing standard style, change it up, otherwise you'll

be non the wiser..A year and a bit later PAula is non the wiser and all

her testing only stands to get her into trouble with future

appointments..She's possably being passed off as a fruit cake by the

specialists she is currently doing the rounds with..

Hope, this is something we've observed on many, many, occasions on many

forums over the last few years, so we STRONGLY FEEL this advice needs

to be out there- wether it's paula or anyone else..

So if you want a soft touch maybe this is the wrong list..we just want

people to get the REAL FACTS behind this disease and it's mainly

between the ears when it's scanned correctly..

I don't know if you also noticed- I was the idiot that kept telling her

to do a decent dose of penicillin a year earlier..the only relief that

PAula seems to have had is from my meager advice....Had she had a scan

to support the infection and damage.. she possably would have been

treated appropriately- which may have meant a combo of drugs with a

decent dose of penicillin targeting the problem, not stabbing in the

dark.

>

> Hi guys, esp. Tony and Penny. I am getting tired of a " bashing " .

> For whatever reasons, I would guess humility, she does not come across

> on this list as being the smart researcher she really is. I've known

> her on lists for many years and she has been one of my gurus. If she

> is doing or suggesting something, then I have put faith in her

> opinions and experiences. She has helped me a lot!!! Nothing is ever

> cut and dried. What works for one may not be the be all, end all for

> everyone. And we are all SO different. While I really appreciate this

> list, sometimes it just deteriorates to judgment and disrespect. So

> FWIW, respectfully, Hope

>

[Guest guest]

Hello Hope,

Thanks so much for your encouragement. The past seven days is the

first time in 17 months that I have been able to think. And now that I

am thinking I realize that I have had to see a lot of doctors and talk

with a lot of experts in order to sort out my situation.

One thing that stands out is this, " Listen to the patient. "

Penny and Tony DO NOT KNOW what my head feels like or how it is

different from 12 years ago or even five years ago. They have no idea

about my symptoms of sinus or tooth infection - NONE.

I am sure I had an infection, perhaps it was never effectively

treated. I have no idea what the infection was/is. I doubt it was

borrelia or mycoplasma. It may have involved EBV.

I don't know if the penicillin VK is working because it is killing

germs or reducing glutamate. NO ONE KNOWS THAT, CERTAINLY NOT TONY OR

PENNY.

I hope it is apparent that my brain is currently working as opposed to

being brain dead and desperate the past months.

AGain, thanks for your encouragement. HOPE you are doing well.

a

>

> Hi guys, esp. Tony and Penny. I am getting tired of a " bashing " .

> For whatever reasons, I would guess humility, she does not come

across

> on this list as being the smart researcher she really is. I've known

> her on lists for many years and she has been one of my gurus. If she

> is doing or suggesting something, then I have put faith in her

> opinions and experiences. She has helped me a lot!!! Nothing is ever

> cut and dried. What works for one may not be the be all, end all for

> everyone. And we are all SO different. While I really appreciate this

> list, sometimes it just deteriorates to judgment and disrespect. So

> FWIW, respectfully, Hope

>

[Guest guest]

a

Unfortunately some of my frustration is directed at you..the other

frustration is that you'll end up like everyone else, non the wiser,

without a leg to stand on during any appointment- as you've

observed..So regardless what you feel, it is a huge problem for many

with these ilnesses if we don't shine some light whenever an

oppurtunity arises..and as I warned 6months to a year earlier the

path you chose left you up shit creek without a paddle....

>

> Hello Hope,

> Thanks so much for your encouragement. The past seven days is the

> first time in 17 months that I have been able to think. And now

that I

> am thinking I realize that I have had to see a lot of doctors and

talk

> with a lot of experts in order to sort out my situation.

>

> One thing that stands out is this, " Listen to the patient. "

>

> Penny and Tony DO NOT KNOW what my head feels like or how it is

> different from 12 years ago or even five years ago. They have no

idea

> about my symptoms of sinus or tooth infection - NONE.

>

> I am sure I had an infection, perhaps it was never effectively

> treated. I have no idea what the infection was/is. I doubt it was

> borrelia or mycoplasma. It may have involved EBV.

>

> I don't know if the penicillin VK is working because it is killing

> germs or reducing glutamate. NO ONE KNOWS THAT, CERTAINLY NOT TONY

OR

> PENNY.

>

> I hope it is apparent that my brain is currently working as opposed

to

> being brain dead and desperate the past months.

>

> AGain, thanks for your encouragement. HOPE you are doing well.

>

> a

>

>

> >

> > Hi guys, esp. Tony and Penny. I am getting tired of

a " bashing " .

> > For whatever reasons, I would guess humility, she does not come

> across

> > on this list as being the smart researcher she really is. I've

known

> > her on lists for many years and she has been one of my gurus. If

she

> > is doing or suggesting something, then I have put faith in her

> > opinions and experiences. She has helped me a lot!!! Nothing is

ever

> > cut and dried. What works for one may not be the be all, end all

for

> > everyone. And we are all SO different. While I really appreciate

this

> > list, sometimes it just deteriorates to judgment and disrespect.

So

> > FWIW, respectfully, Hope

> >

>