Re: Still hoping for clarification, Q's unanswered - PENNY.

[Guest guest]

Unfortunately, Pennys been around (ie sick) since EBV was the big news

in CFS. While I personally know nothing about EBV infection as such, I

do know sociologically that no one pays it any mind anymore. So Pennys

a sceptic, having seen alot of things come and go.

Heres what she might ask you: if EBV antibody titers often go up in

CFS/whatever, why not also borrelia antigen titers or borrelia

antibody? How are borreliae so dissimilar from EBV?

Its a question I think I could answer pretty convincingly, but not

absolutely so. Its a question to which many observations and figures

are relevant - animal models, epidemiology, erythema migrans (which

can be reproduced in macaques), this paper, that paper. One relevant

figure would be the number of asymptomatic Bb sensu lato infections. I

have sources saying asymptomatic infection is very rare, and others

saying its commoner than symptomatic infection. I havent looked into

the gritty of these sources yet to see what I think. But questions

like this add up to real complexity in interpreting whats going on.

Hence, views at variance.

Discussing/debating such things can be very fruitful, but is unlikely

to be so unless the arguments stick close to observations - ie

citation of data, acceptable to all, in support of assertions.

<spam-barb@c...> wrote:

> Well, these seemed like reasonable questions, so I am going to try

> again.... I'll even pare it down to the two most crucial

> questions....

>

> 1. In your statement regarding the focus of research ( & " everyone " )

> being on Bb, are you saying (A)that all chronic illnesses are not

> caused by Bb (how can this not be true?); (B)people WITH KNOWN Bb

> infections should be looking to other organisms to explain their

> symptoms; or © both of the above?

>

> 2. You said, " ...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'm wondering who is the everyone and where is the copious, solid Bb

> related research? And how & when did Bb research begin to displace

> research on other infectious agents?

>

> (well, I'm going to add a q too!) If your goal is to have a forum

> in which all infections are discussed, why are you dissing Bb?

> While it is one of many infectious agents, I fail to understand your

> desire to minimize it... It seems like you are boxing with shadows

> and I don't understand why...

>

[Guest guest]

Durameter,

For the last time. I am in no way " dissing " lyme or anyone's

illness. I don't know anything for sure about this illness. I just

know my own experience and pay close attention to others who have

the same symptoms, regardless of their dx, and watch how they

respond to treatment.

I do know that if we focus too narrowly, we may be missing very

important information that could help a whole lot of people. But it

won't happen if we can't get anyone in our chronic pwc/a-cid group

to even acknowledge that there may be other factors involved. When

we hear about someone responding a certain way to a drug, or even

recovering, we should not just dismiss it if it doesn't seem to fit

the prevalent paradigm. We should be looking at what they did, or

why they got the results they did (or didn't get as the case may be)

rather than telling them they can't possibly be right or they don't

really know what they're talking about.

Regarding your multiple choice quesiton. I can't answer it because

there aren't enough multiple choice answers, indicating you really

DON'T understand what I " m saying. I'm not really sure you want to

understand, and that's why I don't really feel like pursuing a

dialogue. I don't have the energy to waste on arguing, or trying to

explain myself repeatedly, because what I've said so far had been

misconstrued anyway, and I'm not up for it. Life's far too short to

spend arguing.

I have been feeling 100% improved the last couple of days. I'm not

going to waste this precious new-found energy arguing over

semantics, or anything that's not going to benfit others.

The ONLY reason this list exists is to find answers. Emotional

disagreements, and personal agendas (I'm not accusing YOU of this)

are a waste of time and aren't welcome here.

This board is really unique. There are so many other boards in

existence for support or emotional venting.

Let's try to get back to the matter at hand. Which is figuring out

how to get well.

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

> 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

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

> >

> >

> > > But . 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]

Sometimes these dicussions are like being on a merry-go-round.

The way I interpret what penny is saying is that there alot of sick

people (who may or may not test positive for lyme) that go thru Lyme

therapy and don't get better. So for the ones that don't get better,

and don't have positive (lyme) tests, then maybe they should look for

another pathogen.

Dura- I don't think you are in that category- cuz from your data, you

look like a clear cut case of Lyme... my case is also clear cut NOW

after 27 years of being fogged in.

You and I are both positive responders to treatment (even though

relapases may occur).. but there are others who are non-responders and

stay debilitated, or at a low functioning level, seemingly no matter

how much abx they take.

I've been tested for several pathogens other than Lyme.

Oh- sigh - then we have to go around on testing again.

So I think it's normal to have these lists get testy from time to

time because there are so many issues.

Barb

> > Well, these seemed like reasonable questions, so I am going to

try

> > again.... I'll even pare it down to the two most crucial

> > questions....

> >

> > 1. In your statement regarding the focus of research

( & " everyone " )

> > being on Bb, are you saying (A)that all chronic illnesses are not

> > caused by Bb (how can this not be true?); (B)people WITH KNOWN Bb

> > infections should be looking to other organisms to explain their

> > symptoms; or © both of the above?

> >

> > 2. You said, " ...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'm wondering who is the everyone and where is the copious, solid

Bb

> > related research? And how & when did Bb research begin to

displace

> > research on other infectious agents?

> >

> > (well, I'm going to add a q too!) If your goal is to have a

forum

> > in which all infections are discussed, why are you dissing Bb?

> > While it is one of many infectious agents, I fail to understand

your

> > desire to minimize it... It seems like you are boxing with

shadows

> > and I don't understand why...

> >