Re: understanding Penny's point...THANKS, DM!

[Guest guest]

I have been watching the board when I can, and felt very frustrated

that I am not well enough to engage Penny's recent posts, which

bothered me for exactly the same reasons you mention here.

Anyone who has even a passing acquaintance with Lyme disease knows

that the curse hanging over this disease is too LITTLE focused

attention and effort, not too MUCH.

Penny knows I have a very high regard for her, so this is really a

criticism of the rhetoric she's using, not her. But if the rhetoric

does not change, I won't be returning to this list when I am well

enough to do so.

As list owner, Penny sets the tone, and I won't come to a site where

people who don't have a Lyme diagnosis or even positive serology

feel free to make Steeere-like declarations about how the whole

concern with Lyme disease is overblown.

It's unacceptable, regardless of my affection and esteem for the

author, because it invites more of the same from others, whose

disclaimers I am less likely to regard as sincere.

So thank you, DM, for asking for clarification on these critical

points. I hope that Penny will provide it to you, and develop

rhetorical strategies that do not make patients like me feel they

have no place any longer on this list.

> --- In infections , " penny "

> <pennyhoule@y...> wrote [iN PART]:

> > I've ALWAYS, for years, been concerned that people might get too

> > fixated on one organism while letting others get by them. I was

> just

> > happy though, that people at least started accepting the premise

> > that infection might be the cause of these chronic illnesses,

and

> > that people were recognizing the similarities between other

> chronic

> > illnesses, like CFS, FMS RA, lyme disease, etc. and how they all

> > respond to abx treatment.

>

> *****If you are saying that all chronic illnesses are not caused

by

> Bb and that people should be looking at other organisms, I

couldn't

> agree with you more!!! However, if what you are saying (which is

> what it sounded like in the post, and to what I was responding),

> that symptoms in people WITH KNOWN Bb infections should be looking

> to different organisms to explain symptoms, that is the part I

> disagree with you on. Do you mean the former????

>

>

> > But since everyone's so blinded by the " lyme light " most people

> > aren't even interested in looking at the research, let alone get

> > tested, for the other, more common, infectious bugs, or in

looking

> > at how they're negatively affecting our health. I was ecstatic

> when

> > Dr. Shoemaker came out saying that if you don't treat the staph

> (or

> > the mold) first, you're not going to get the lyme.

>

> *****If only so many people were doing research on Bb!!! I guess

I

> don't know who the " everyone " is to whom you refer. I do know

there

> are a few studies here and there about Bb & AD, ALS, and MS, but

not

> very many at all. Even the (solid) research on Bb is relatively

> sparse... Perhaps you could elaborate on 'since everyone's so

> blinded by the " lyme light " ' -- it seems like this means something

> very concrete to you and I'm interested in knowing what it is.

>

>

> > I just keep bringing it up as a reminder, the sole voice in the

> > wilderness, because nobody else does. I was talking infection on

> the

> > CFS/FMS boards years ago and getting criticized heavily for it

> > (while Tony was being banned).

>

> *****Who is this Tony person that you've referred to twice (last

> post too)?

>

>

> > Also, I HAVE had many SMOKY MOUNTAIN tests done, I'm not sure

why

> > you'd assume I haven't?

>

> *****I assumed you hadn't had such a GI test because you were

saying

> that Nystatin might kill yeast and other pathogens that might be

> lurking in the gut. Given the " might " (or whatever actual word

was

> used, just the lack of definitive data), it sounded like (A) you

> didn't know what GI pathogens you had, nor ( what treatments

they

> would respond to. For those who don't know, the Smoky Mountain

(or

> some such named lab that I can't recall completely) assesses the

> pathogens in your GI system (yeast, parasites, bacteria, both know

> and possible pathogens) and also provides a sensitivity test if

> pathogens are identified (for example, one bacteria that I tested

> postive for also included an ABX sensitivity chart and indicated

> that the bug was sensitive to mino, cipro & bactrum, but resistent

> to amoxicillin, ceftin, and something else).

[Guest guest]

, I simply ask you, when does conviction become dogma? Why

ignore everything else to support only your view? Does this kind of

behavior sound at all familiar to you? Why is it assumed that if I

mention that other organisms might be involved in our illness and

should be investigated too, that I'm ANTI-LYME? I'm not, I'm pro-

getting well!

And that means looking at the big picture. The big picture includes

lyme, but isn't exclusive to lyme. And believe me lyme gets LOTS of

press compared to CFS. LOTS of air time. But if I bring up the

possibility of another organism, i.e. the New Castle team's research

showing that STAPH is the cause of CFS, it's ignored or shot down

(because it is perceived as an attack on lyme). No one's interested

in the fact that other organisms make people really sick too, and

because of that kind of single minded approach, people who might be

helped by other avenues of information can't even hear it. They're

either conditioned not to, or not allowed to, because everything

contrary to the party line is perceived as an attack on lyme. Have

you ever even ever bothered to look at other boards that deal with

other chronic infections? To compare the similarities in symptoms

and treatments to ours? There's lots to learn from these other

people. That's why I visited lyme boards when no one would consider

CFS a bacterial illness.

If you think the lymies have it bad for not being taken seriously,

try getting a plain old CFS dx or an " autoimmune " dx where NOTHING

you experience is taken seriously, and your treatment plan is maybe

an anti-depressant and a couple of shrugged shoulders. As far as I'm

concerned, Lymies are light years ahead of PW/CFS. I was ecstatic

that you've got doctors willing to treat, and a good number of

people who ARE convinced that Lyme is a bacterial illness that

should be treated with ABX. How many CFS doctors will even go there?

There are a lot of people here who are sick who do NOT have lyme

dx's, can't afford lyme dx's, and they need to be encouraged to look

for any source of infection. They need some kind of DX to get ANY

abx. There are also people here whoDO have lyme dx's and it's

possible (actually, likely) that they have other sources of

infection as well, but they're not looking. My good friend has lyme

and chronic osteomyelitis and rotten sinuses, along with a few other

nasty conditions. She's got a fantastic team of doctors. She's on

i.v. abx and IVIGG. Which illness do you think they're going after

the hardest? It's not the lyme, although they're watching that as

well. It's the Chronic osteomyeltis and the sinus infections. If it

were me, I'd want to know as many of my enemies as possible.

penny

p.s. I have rotten sinuses and chronic osteomyelitis too, and I

truly believe there are huge numbers of us out there. I will keep

bringing it up until the discrimination against patients with THOSE

illnesses has stopped, just as you have fought to stop

discrimination against people with lyme.

> > --- In infections , " penny "

> > <pennyhoule@y...> wrote [iN PART]:

> > > I've ALWAYS, for years, been concerned that people might get

too

> > > fixated on one organism while letting others get by them. I

was

> > just

> > > happy though, that people at least started accepting the

premise

> > > that infection might be the cause of these chronic illnesses,

> and

> > > that people were recognizing the similarities between other

> > chronic

> > > illnesses, like CFS, FMS RA, lyme disease, etc. and how they

all

> > > respond to abx treatment.

> >

> > *****If you are saying that all chronic illnesses are not caused

> by

> > Bb and that people should be looking at other organisms, I

> couldn't

> > agree with you more!!! However, if what you are saying (which

is

> > what it sounded like in the post, and to what I was responding),

> > that symptoms in people WITH KNOWN Bb infections should be

looking

> > to different organisms to explain symptoms, that is the part I

> > disagree with you on. Do you mean the former????

> >

> >

> > > But since everyone's so blinded by the " lyme light " most

people

> > > aren't even interested in looking at the research, let alone

get

> > > tested, for the other, more common, infectious bugs, or in

> looking

> > > at how they're negatively affecting our health. I was ecstatic

> > when

> > > Dr. Shoemaker came out saying that if you don't treat the

staph

> > (or

> > > the mold) first, you're not going to get the lyme.

> >

> > *****If only so many people were doing research on Bb!!! I

guess

> I

> > don't know who the " everyone " is to whom you refer. I do know

> there

> > are a few studies here and there about Bb & AD, ALS, and MS, but

> not

> > very many at all. Even the (solid) research on Bb is relatively

> > sparse... Perhaps you could elaborate on 'since everyone's so

> > blinded by the " lyme light " ' -- it seems like this means

something

> > very concrete to you and I'm interested in knowing what it is.

> >

> >

> > > I just keep bringing it up as a reminder, the sole voice in

the

> > > wilderness, because nobody else does. I was talking infection

on

> > the

> > > CFS/FMS boards years ago and getting criticized heavily for it

> > > (while Tony was being banned).

> >

> > *****Who is this Tony person that you've referred to twice (last

> > post too)?

> >

> >

> > > Also, I HAVE had many SMOKY MOUNTAIN tests done, I'm not sure

> why

> > > you'd assume I haven't?

> >

> > *****I assumed you hadn't had such a GI test because you were

> saying

> > that Nystatin might kill yeast and other pathogens that might be

> > lurking in the gut. Given the " might " (or whatever actual word

> was

> > used, just the lack of definitive data), it sounded like (A) you

> > didn't know what GI pathogens you had, nor ( what treatments

> they

> > would respond to. For those who don't know, the Smoky Mountain

> (or

> > some such named lab that I can't recall completely) assesses the

> > pathogens in your GI system (yeast, parasites, bacteria, both

know

> > and possible pathogens) and also provides a sensitivity test if

> > pathogens are identified (for example, one bacteria that I

tested

> > postive for also included an ABX sensitivity chart and indicated

> > that the bug was sensitive to mino, cipro & bactrum, but

resistent

> > to amoxicillin, ceftin, and something else).

[Guest guest]

I appreciate you taking the time to respond, Penny.

I still have no idea why you're saying any of this. I have never

seen discrimination on this list against people with sinus

infections or non-Lyme diagnoses. Perhaps I'm just blind to my role

as oppressor of non-Lymies, but I really don't see it or believe it

occurs.

What I do see is that if you or Tony post about some-non Lyme

bacteria, or Jaep posts about yeast, or someone else posts

about CFS, or I post about Lyme what everyone else does is respond

to those posts that seem relevant to their interests.

What would it take for you not to feel discriminated against? Must

Lymies prove their lack of bigotry by failing to talk about their

primary diagnosis, or talking more than they have any natural urge

to about root canals?

I just don't get what you're asking for, and I do kind of resent

having this charge leveled when its not clear who you're leveling at

or what they accused is supposed to have done.

> > > --- In infections , " penny "

> > > <pennyhoule@y...> wrote [iN PART]:

> > > > I've ALWAYS, for years, been concerned that people might get

> too

> > > > fixated on one organism while letting others get by them. I

> was

> > > just

> > > > happy though, that people at least started accepting the

> premise

> > > > that infection might be the cause of these chronic

illnesses,

> > and

> > > > that people were recognizing the similarities between other

> > > chronic

> > > > illnesses, like CFS, FMS RA, lyme disease, etc. and how they

> all

> > > > respond to abx treatment.

> > >

> > > *****If you are saying that all chronic illnesses are not

caused

> > by

> > > Bb and that people should be looking at other organisms, I

> > couldn't

> > > agree with you more!!! However, if what you are saying (which

> is

> > > what it sounded like in the post, and to what I was

responding),

> > > that symptoms in people WITH KNOWN Bb infections should be

> looking

> > > to different organisms to explain symptoms, that is the part I

> > > disagree with you on. Do you mean the former????

> > >

> > >

> > > > But since everyone's so blinded by the " lyme light " most

> people

> > > > aren't even interested in looking at the research, let alone

> get

> > > > tested, for the other, more common, infectious bugs, or in

> > looking

> > > > at how they're negatively affecting our health. I was

ecstatic

> > > when

> > > > Dr. Shoemaker came out saying that if you don't treat the

> staph

> > > (or

> > > > the mold) first, you're not going to get the lyme.

> > >

> > > *****If only so many people were doing research on Bb!!! I

> guess

> > I

> > > don't know who the " everyone " is to whom you refer. I do know

> > there

> > > are a few studies here and there about Bb & AD, ALS, and MS,

but

> > not

> > > very many at all. Even the (solid) research on Bb is

relatively

> > > sparse... Perhaps you could elaborate on 'since everyone's so

> > > blinded by the " lyme light " ' -- it seems like this means

> something

> > > very concrete to you and I'm interested in knowing what it is.

> > >

> > >

> > > > I just keep bringing it up as a reminder, the sole voice in

> the

> > > > wilderness, because nobody else does. I was talking

infection

> on

> > > the

> > > > CFS/FMS boards years ago and getting criticized heavily for

it

> > > > (while Tony was being banned).

> > >

> > > *****Who is this Tony person that you've referred to twice

(last

> > > post too)?

> > >

> > >

> > > > Also, I HAVE had many SMOKY MOUNTAIN tests done, I'm not

sure

> > why

> > > > you'd assume I haven't?

> > >

> > > *****I assumed you hadn't had such a GI test because you were

> > saying

> > > that Nystatin might kill yeast and other pathogens that might

be

> > > lurking in the gut. Given the " might " (or whatever actual

word

> > was

> > > used, just the lack of definitive data), it sounded like (A)

you

> > > didn't know what GI pathogens you had, nor ( what treatments

> > they

> > > would respond to. For those who don't know, the Smoky

Mountain

> > (or

> > > some such named lab that I can't recall completely) assesses

the

> > > pathogens in your GI system (yeast, parasites, bacteria, both

> know

> > > and possible pathogens) and also provides a sensitivity test

if

> > > pathogens are identified (for example, one bacteria that I

> tested

> > > postive for also included an ABX sensitivity chart and

indicated

> > > that the bug was sensitive to mino, cipro & bactrum, but

> resistent

> > > to amoxicillin, ceftin, and something else).

[Guest guest]

, you just said you were going to leave the list if the

discussion basically doesn't go the way you want it to.

I want anyone who thinks they're dealing with infection or

inflammation, of any kind, to be able to participate in this list

whether they're dx'd with lyme or not.

Those who have the lyme dx are at least lucky to have a dx. A lot of

people with CFS/ME don't have anything solid at all, so we need to

be able to talk about ALL the possible kinds of infections, all the

ways to get dx'd and treated, which means if someone brings up an

alternative to lyme as a cause of symptoms that most of us share, it

shouldn't be perceived as an attack on someone else's lyme dx. Such

questions or ruminations shouldn't be jumped on as an anti-lyme

agenda. Didn't you just compare me to Steere in your recent post?

We need to work together, not get bogged down in who's dx is the

worst, or which organism is supreme and which one is being " dissed " .

That means not getting defensive when a question is raised which

might poke at the status quo.

I've visited lots of boards with people just as sick as you are,

with all the same symptoms and more, who have different dxs. Or no

dx's. People who are on ventilators while also fighting massive,

lifelong, chronic sinus infections. But nobody's looking at the

sinus infection.

It doesn't help to have such serious infections dismissed as

inconsequential (by the medical community) or less important than

other illnesses (by peers) to these people who are really suffering

and looking for some kind of relief with serious treatment. It's the

vigorous questioning of the status quo that might lead us to new

answers or at least lead someone to a treatment they hadn't had

access to before.

We can't do that if everyone's not given a chance to share their own

experiences and hypotheses so that we can see how all the pieces fit

into the bigger picture of chronic infection and chronic illness.

I'd like to see us get back to discussing the research, posting our

own experiences with various protocols, and keeping open minds,

remembering that we don't have the answers yet, nobody's got

the " cure " and nothing's predetermined. That even includes keeping

an open mind about what's being promoted at marshallprotocol.com. I

mean seriously, if ANYONE were entitled to be biased against that

topic, it would be me, considering I was sued over it, but I'm

determined to keep an open mind anyway, at least when it comes to

looking at its various components and how they work or don't work.

That's what I'm looking for on this list. Open minds. Agreeable

disagreement. Vigorous discussion, while remembering that no

diagnosis or treatment is " precious " .

penny

> > > > --- In infections , " penny "

> > > > <pennyhoule@y...> wrote [iN PART]:

> > > > > I've ALWAYS, for years, been concerned that people might

get

> > too

> > > > > fixated on one organism while letting others get by them.

I

> > was

> > > > just

> > > > > happy though, that people at least started accepting the

> > premise

> > > > > that infection might be the cause of these chronic

> illnesses,

> > > and

> > > > > that people were recognizing the similarities between

other

> > > > chronic

> > > > > illnesses, like CFS, FMS RA, lyme disease, etc. and how

they

> > all

> > > > > respond to abx treatment.

> > > >

> > > > *****If you are saying that all chronic illnesses are not

> caused

> > > by

> > > > Bb and that people should be looking at other organisms, I

> > > couldn't

> > > > agree with you more!!! However, if what you are saying

(which

> > is

> > > > what it sounded like in the post, and to what I was

> responding),

> > > > that symptoms in people WITH KNOWN Bb infections should be

> > looking

> > > > to different organisms to explain symptoms, that is the part

I

> > > > disagree with you on. Do you mean the former????

> > > >

> > > >

> > > > > But since everyone's so blinded by the " lyme light " most

> > people

> > > > > aren't even interested in looking at the research, let

alone

> > get

> > > > > tested, for the other, more common, infectious bugs, or in

> > > looking

> > > > > at how they're negatively affecting our health. I was

> ecstatic

> > > > when

> > > > > Dr. Shoemaker came out saying that if you don't treat the

> > staph

> > > > (or

> > > > > the mold) first, you're not going to get the lyme.

> > > >

> > > > *****If only so many people were doing research on Bb!!! I

> > guess

> > > I

> > > > don't know who the " everyone " is to whom you refer. I do

know

> > > there

> > > > are a few studies here and there about Bb & AD, ALS, and MS,

> but

> > > not

> > > > very many at all. Even the (solid) research on Bb is

> relatively

> > > > sparse... Perhaps you could elaborate on 'since everyone's

so

> > > > blinded by the " lyme light " ' -- it seems like this means

> > something

> > > > very concrete to you and I'm interested in knowing what it

is.

> > > >

> > > >

> > > > > I just keep bringing it up as a reminder, the sole voice

in

> > the

> > > > > wilderness, because nobody else does. I was talking

> infection

> > on

> > > > the

> > > > > CFS/FMS boards years ago and getting criticized heavily

for

> it

> > > > > (while Tony was being banned).

> > > >

> > > > *****Who is this Tony person that you've referred to twice

> (last

> > > > post too)?

> > > >

> > > >

> > > > > Also, I HAVE had many SMOKY MOUNTAIN tests done, I'm not

> sure

> > > why

> > > > > you'd assume I haven't?

> > > >

> > > > *****I assumed you hadn't had such a GI test because you

were

> > > saying

> > > > that Nystatin might kill yeast and other pathogens that

might

> be

> > > > lurking in the gut. Given the " might " (or whatever actual

> word

> > > was

> > > > used, just the lack of definitive data), it sounded like (A)

> you

> > > > didn't know what GI pathogens you had, nor ( what

treatments

> > > they

> > > > would respond to. For those who don't know, the Smoky

> Mountain

> > > (or

> > > > some such named lab that I can't recall completely) assesses

> the

> > > > pathogens in your GI system (yeast, parasites, bacteria,

both

> > know

> > > > and possible pathogens) and also provides a sensitivity test

> if

> > > > pathogens are identified (for example, one bacteria that I

> > tested

> > > > postive for also included an ABX sensitivity chart and

> indicated

> > > > that the bug was sensitive to mino, cipro & bactrum, but

> > resistent

> > > > to amoxicillin, ceftin, and something else).

[Guest guest]

OK, Penny, you win. I can't possibly keep up with the non-response

responses you keep posting to what was a simple and very reasonable

request. So by all means, assert your rights by trivializing other

people's illnesses. Hopefully, I & I will survive your need to make

light of a diagnosis you don't have.

You know damn well no one has prevented you or anyone else here from

talking about non-Lyme infection. You invent oppressors so you can

feel justified making comments like this. Go for it.

I'll be going myself.

> > > > > --- In infections , " penny "

> > > > > <pennyhoule@y...> wrote [iN PART]:

> > > > > > I've ALWAYS, for years, been concerned that people might

> get

> > > too

> > > > > > fixated on one organism while letting others get by

them.

> I

> > > was

> > > > > just

> > > > > > happy though, that people at least started accepting the

> > > premise

> > > > > > that infection might be the cause of these chronic

> > illnesses,

> > > > and

> > > > > > that people were recognizing the similarities between

> other

> > > > > chronic

> > > > > > illnesses, like CFS, FMS RA, lyme disease, etc. and how

> they

> > > all

> > > > > > respond to abx treatment.

> > > > >

> > > > > *****If you are saying that all chronic illnesses are not

> > caused

> > > > by

> > > > > Bb and that people should be looking at other organisms, I

> > > > couldn't

> > > > > agree with you more!!! However, if what you are saying

> (which

> > > is

> > > > > what it sounded like in the post, and to what I was

> > responding),

> > > > > that symptoms in people WITH KNOWN Bb infections should be

> > > looking

> > > > > to different organisms to explain symptoms, that is the

part

> I

> > > > > disagree with you on. Do you mean the former????

> > > > >

> > > > >

> > > > > > But since everyone's so blinded by the " lyme light " most

> > > people

> > > > > > aren't even interested in looking at the research, let

> alone

> > > get

> > > > > > tested, for the other, more common, infectious bugs, or

in

> > > > looking

> > > > > > at how they're negatively affecting our health. I was

> > ecstatic

> > > > > when

> > > > > > Dr. Shoemaker came out saying that if you don't treat

the

> > > staph

> > > > > (or

> > > > > > the mold) first, you're not going to get the lyme.

> > > > >

> > > > > *****If only so many people were doing research on Bb!!!

I

> > > guess

> > > > I

> > > > > don't know who the " everyone " is to whom you refer. I do

> know

> > > > there

> > > > > are a few studies here and there about Bb & AD, ALS, and

MS,

> > but

> > > > not

> > > > > very many at all. Even the (solid) research on Bb is

> > relatively

> > > > > sparse... Perhaps you could elaborate on 'since

everyone's

> so

> > > > > blinded by the " lyme light " ' -- it seems like this means

> > > something

> > > > > very concrete to you and I'm interested in knowing what it

> is.

> > > > >

> > > > >

> > > > > > I just keep bringing it up as a reminder, the sole voice

> in

> > > the

> > > > > > wilderness, because nobody else does. I was talking

> > infection

> > > on

> > > > > the

> > > > > > CFS/FMS boards years ago and getting criticized heavily

> for

> > it

> > > > > > (while Tony was being banned).

> > > > >

> > > > > *****Who is this Tony person that you've referred to twice

> > (last

> > > > > post too)?

> > > > >

> > > > >

> > > > > > Also, I HAVE had many SMOKY MOUNTAIN tests done, I'm not

> > sure

> > > > why

> > > > > > you'd assume I haven't?

> > > > >

> > > > > *****I assumed you hadn't had such a GI test because you

> were

> > > > saying

> > > > > that Nystatin might kill yeast and other pathogens that

> might

> > be

> > > > > lurking in the gut. Given the " might " (or whatever actual

> > word

> > > > was

> > > > > used, just the lack of definitive data), it sounded like

(A)

> > you

> > > > > didn't know what GI pathogens you had, nor ( what

> treatments

> > > > they

> > > > > would respond to. For those who don't know, the Smoky

> > Mountain

> > > > (or

> > > > > some such named lab that I can't recall completely)

assesses

> > the

> > > > > pathogens in your GI system (yeast, parasites, bacteria,

> both

> > > know

> > > > > and possible pathogens) and also provides a sensitivity

test

> > if

> > > > > pathogens are identified (for example, one bacteria that I

> > > tested

> > > > > postive for also included an ABX sensitivity chart and

> > indicated

> > > > > that the bug was sensitive to mino, cipro & bactrum, but

> > > resistent

> > > > > to amoxicillin, ceftin, and something else).

[Guest guest]

, I've written you privately. There is nothing to win here,

except our battle against this disease.

And just to clarify, I in no way mean to trivialize anyone's

illness. After having it done to me for years, why would I do it to

someone else?

I am simply requesting that people keep open minds, remembering that

there are numerous topics that fall under 'infection and

inflammation' and that nothing should be considered a sacred cow.

penny

> OK, Penny, you win. I can't possibly keep up with the non-response

> responses you keep posting to what was a simple and very

reasonable

> request. So by all means, assert your rights by trivializing other

> people's illnesses. Hopefully, I & I will survive your need to

make

> light of a diagnosis you don't have.

>