Re: wrestling with difficult questions - , Penny, Barb

[Guest guest]

It's interesting watching us try to wrestle with these questions, I

see how the tendency is there to veer a little wide of the mark, not

in error so much as in an effort to encompass all the relevant

possibilities.

says, " Something is wrong, because antibiotic treatment has to

work, but it doesn't. " In response we widen the net, we challenge

the assumption that adequate concentrations of antibiotic medication

get where they need to go, because there are obvious possible

complications.

Coagulation issues are a major factor and we have Penny noting this

rather extreme view which is probably appropriate for at least a few

of us but I'm not sure, because it arises in the context of

osteomyelitis which I know something about because it crippled my

father as a boy and left his young, athletic body badly skewed for

life.

That is not so extreme that nothing like it ever happens to Lyme

patients, but is also hardly typical of even the more extreme

cases...then Barb says 'I hope not' and I have to agree and now we

are thinking about whether what is necessary in these extreme cases

is always or even usually SUFFICIENT and perhaps it is but perhaps

it is not, and after all I have heard encouraging things from

patients about all the anticoagulants that this extreme view

dismisses as irrelevant.

Let me just say a few more things about the questions that started

us off here, from , and how they do but also do not come to

grips with what is difficult and uncertain in Lyme treatment.

Does anyone actually doubt that IV treatment is often truncated by

inadequate insurance coverage and exhausted personal finances? Or

that sustained IV treatment is reserved for the very sickest

patients, whose bodies and nervous systems have registered so many

serious insults that the symptoms reverberate and feed off each

other's energies and are quite capable of looking you in the eye

after months of IV treatment and quipping 'look, Ma, no bugs!'

There was an article in last month's Lyme Times that described

as 'very appealing' a strategy of beginning rather than ending

treatment with IV administered antibiotics, and it is certainly

possible that we need to take the treatment strategies now reserved

for the last phase of treatment in the most serious 30% of cases and

apply it to the first phrase of treatment in a much larger

percentage of cases.

In other words, treatment may fail not because we don't have the

right ingredients but because we are chronically late in applying

them, which is of course the whole problem that Lymies take for

granted and often forget to calculate into their assessments of how

things do or don't work, that we all have to wait an ungodly long

time for some enlightened clinician to think " Lyme! " and then we

wait for a positive test result and then we wait for insurance

approvals or family support or whatever other practical needs must

be met for a treatment plan to be put into effect.

We must not, , succumb to Steere's fantasy that we live in a

world where Lyme treatment is ordinarily prompt and well-conceived

and unproblematic to obtain and received in a context free of

unreasonable stresses and sustained for as long as there is good

reason to suspect that infection persists.

We live in this world, where none of those things are ordinarily

true and results measure not just the success or failure of a

particular drug or delivery system but the entire health care

system's miserable, miserly clinical response to an undeclared

epidemic.

We must not, in other words, fall into the trap of assuming ideal

conditions and then judging the potential of treatment modalities on

that basis, when in reality the rule, not the exception, is too

little, too late.

But all this veering about, looking at things through the minds many

sets of micro and macro lenses, exchanging one set of assumptions

for another like a CD-changer to see how the same facts sound when

recited to a different tune, all of it is productive and gets us a

picture of reality that is more complete and complex than anything

we are likely to detect in the mind of the average physician.

But we should keep a sense of play about it all, even though it is

serious play, because while in discussion we may temproarily give

one or another working assumption privileged status in real life the

only thing that deserves this privilege is our own determination to

get well.

Presumably we all know this, I am not saying we don't, only that it

is good to say it out loud, so we do not frighten ourselves by

confusing dire notions that arise in the course of speculation with

hard facts that must be swallowed whole and taken to heart.

The highest authority on what the bugs can or cannot survive is of

course the bugs themselves, just as the highest authority on what we

can or cannot do to stop them is ultimately not 's speculations

or mine or Jill's or Barb's or Penny's or J's or anyone's, sure

as sh*t not Alan Steere's (may he be innoculated with Bb, locked in

a closet with the Unnameable One, and forced to live on a diet of

Benicar and his own crapulous declarations until even he can't stand

another bite of them...)

These are my thoughts, highly fallible despite the Papal pretensions

of the mind in which they swim.

God bless us, Tiny Tim. God bless us, one and all.

Scha

> > > I think the blood values would be usefull data in trying to

> > dechiper just what was causing the constant downward trend and

> > increased pain. I think others were trying to figure out the

> correct

> > panel to baseline in order to yeild usefull data about what the

> heck

> > is going on. "

> >

> >

> > Here's another consideration when taking abx and needing base

line

> > markers.

> >

> > I've been hearing recently, from outside sources, that some well

> > versed docs are saying that you can't beat a major infection

with

> an

> > INR above 3.5. That's the maximum clotting time. These docs, who

> > deal with nasty bone infections, are also saying that heparin,

> > nattokinase, lovenox, etc. will not cut it. That they do not

> > maintain consistent INR values. That if you're dealing with a

> > serious infection, you've got to be on lovenox. Possibly for

> life. :-

> > ( The point being that if we've got coagulation disorders, or

> > major coagulation problems (as many of us seem to have), no

amount

> > of abx alone is going to rid us of chronic infection. We need

> > serious blood thinning as an adjunct to therapy so we can reach

the

> > bugs where they're hiding. And the way to know whether the abx

has

> a

> > chance at working is to have our INR tested weekly while on

> > treatment.

> >

> > penny

[Guest guest]

-, As always I enjoy your writing and especially the humor.

Are you writing a book? You should be published.

Marie

-- In infections , " Schaafsma "

<compucruz@y...> wrote:

> It's interesting watching us try to wrestle with these questions, I

> see how the tendency is there to veer a little wide of the mark, not

> in error so much as in an effort to encompass all the relevant

> possibilities.

>

> says, " Something is wrong, because antibiotic treatment has to

> work, but it doesn't. " In response we widen the net, we challenge

> the assumption that adequate concentrations of antibiotic medication

> get where they need to go, because there are obvious possible

> complications.

>

> Coagulation issues are a major factor and we have Penny noting this

> rather extreme view which is probably appropriate for at least a few

> of us but I'm not sure, because it arises in the context of

> osteomyelitis which I know something about because it crippled my

> father as a boy and left his young, athletic body badly skewed for

> life.

>

> That is not so extreme that nothing like it ever happens to Lyme

> patients, but is also hardly typical of even the more extreme

> cases...then Barb says 'I hope not' and I have to agree and now we

> are thinking about whether what is necessary in these extreme cases

> is always or even usually SUFFICIENT and perhaps it is but perhaps

> it is not, and after all I have heard encouraging things from

> patients about all the anticoagulants that this extreme view

> dismisses as irrelevant.

>

> Let me just say a few more things about the questions that started

> us off here, from , and how they do but also do not come to

> grips with what is difficult and uncertain in Lyme treatment.

>

> Does anyone actually doubt that IV treatment is often truncated by

> inadequate insurance coverage and exhausted personal finances? Or

> that sustained IV treatment is reserved for the very sickest

> patients, whose bodies and nervous systems have registered so many

> serious insults that the symptoms reverberate and feed off each

> other's energies and are quite capable of looking you in the eye

> after months of IV treatment and quipping 'look, Ma, no bugs!'

>

> There was an article in last month's Lyme Times that described

> as 'very appealing' a strategy of beginning rather than ending

> treatment with IV administered antibiotics, and it is certainly

> possible that we need to take the treatment strategies now reserved

> for the last phase of treatment in the most serious 30% of cases and

> apply it to the first phrase of treatment in a much larger

> percentage of cases.

>

> In other words, treatment may fail not because we don't have the

> right ingredients but because we are chronically late in applying

> them, which is of course the whole problem that Lymies take for

> granted and often forget to calculate into their assessments of how

> things do or don't work, that we all have to wait an ungodly long

> time for some enlightened clinician to think " Lyme! " and then we

> wait for a positive test result and then we wait for insurance

> approvals or family support or whatever other practical needs must

> be met for a treatment plan to be put into effect.

>

> We must not, , succumb to Steere's fantasy that we live in a

> world where Lyme treatment is ordinarily prompt and well-conceived

> and unproblematic to obtain and received in a context free of

> unreasonable stresses and sustained for as long as there is good

> reason to suspect that infection persists.

>

> We live in this world, where none of those things are ordinarily

> true and results measure not just the success or failure of a

> particular drug or delivery system but the entire health care

> system's miserable, miserly clinical response to an undeclared

> epidemic.

>

> We must not, in other words, fall into the trap of assuming ideal

> conditions and then judging the potential of treatment modalities on

> that basis, when in reality the rule, not the exception, is too

> little, too late.

>

> But all this veering about, looking at things through the minds many

> sets of micro and macro lenses, exchanging one set of assumptions

> for another like a CD-changer to see how the same facts sound when

> recited to a different tune, all of it is productive and gets us a

> picture of reality that is more complete and complex than anything

> we are likely to detect in the mind of the average physician.

>

> But we should keep a sense of play about it all, even though it is

> serious play, because while in discussion we may temproarily give

> one or another working assumption privileged status in real life the

> only thing that deserves this privilege is our own determination to

> get well.

>

> Presumably we all know this, I am not saying we don't, only that it

> is good to say it out loud, so we do not frighten ourselves by

> confusing dire notions that arise in the course of speculation with

> hard facts that must be swallowed whole and taken to heart.

>

> The highest authority on what the bugs can or cannot survive is of

> course the bugs themselves, just as the highest authority on what we

> can or cannot do to stop them is ultimately not 's speculations

> or mine or Jill's or Barb's or Penny's or J's or anyone's, sure

> as sh*t not Alan Steere's (may he be innoculated with Bb, locked in

> a closet with the Unnameable One, and forced to live on a diet of

> Benicar and his own crapulous declarations until even he can't stand

> another bite of them...)

>

> These are my thoughts, highly fallible despite the Papal pretensions

> of the mind in which they swim.

>

> God bless us, Tiny Tim. God bless us, one and all.

>

> Scha

>

>

> > > > I think the blood values would be usefull data in trying to

> > > dechiper just what was causing the constant downward trend and

> > > increased pain. I think others were trying to figure out the

> > correct

> > > panel to baseline in order to yeild usefull data about what the

> > heck

> > > is going on. "

> > >

> > >

> > > Here's another consideration when taking abx and needing base

> line

> > > markers.

> > >

> > > I've been hearing recently, from outside sources, that some well

> > > versed docs are saying that you can't beat a major infection

> with

> > an

> > > INR above 3.5. That's the maximum clotting time. These docs, who

> > > deal with nasty bone infections, are also saying that heparin,

> > > nattokinase, lovenox, etc. will not cut it. That they do not

> > > maintain consistent INR values. That if you're dealing with a

> > > serious infection, you've got to be on lovenox. Possibly for

> > life. :-

> > > ( The point being that if we've got coagulation disorders, or

> > > major coagulation problems (as many of us seem to have), no

> amount

> > > of abx alone is going to rid us of chronic infection. We need

> > > serious blood thinning as an adjunct to therapy so we can reach

> the

> > > bugs where they're hiding. And the way to know whether the abx

> has

> > a

> > > chance at working is to have our INR tested weekly while on

> > > treatment.

> > >

> > > penny

[Guest guest]

Yeah, I hope they're not correct either. But I have to say that I

really think that those of us who've been chronically and long term

ill, have to start realizing that we probably DO have bugs in the

bone, and all those other great places they like to bore into where

treatments can't reach. I feel so certain, " in my bones " certain,

based on all the experiences I've heard and read, that one day more

and more people are going to connect chronic illness to chronic

infections of the jaws and sinuses. I'm talking about in the masses

here, not a few rare cases. I don't care if the bug is lyme or staph

or boll weevil, somehow these bugs get into places where we just

can't seem to get them out. I'm sure this penetration is due to all

kinds of physical, and environmental, and worst of all, medical-

establishment induced trauma (aka dental work). And of course

(adding insult to injury), ineptitude. sigh.

I've just watched this thing play out in so many people who've been

ill for such a long time. Everybody ends up with every diagnosis.

The young ones have a chance at recovery, sometimes simply removing

what turns out to be their rotting tonsils gives them their lives

back, but the ones like me, who've been harboring these bugs for

decades, are fighting a major uphill battle.

I'm not saying I'm giving up. I'm not. I'm always hopeful, although

admittedly tired. I'm tired of getting excited about the latest,

greatest new cure. I'm tired of talking about B-vitamins and

glutathione and magnesium amd all the other various nutrients we're

depleted of. I know they help, they plug the gap maybe, but they're

not the cure, not based on my experience or watching the tiny few

who actually get well. Still, I'm intrigued by new treatments like

IVIG, that actually increase the production of white blood cells,

and very encouraged by people as sick as Barb and Tony were, who've

apparently been able to achieve remission (but even they admit that

they are both constantly vigilant for the slightest sign of bugs re-

emerging). And they both took very agressive, unconventional, and

well researched approaches (although their research techniques may

have been very different). I, unfortunately, get swept up by the

fatigue, and lose the cognitive ability or mental energy to stay

focused on my own research and visit all the doctors I need to see.

That's why I appreciate this list so much, such sharp minds here.

I just get so frustrated going around these same circles over and

over again, since I started out. The lingo's getting a lot more

sophisticated, and we're looking much deeper, but we're still

talking about the same stuff, and I'm afraid we get ourselves so one-

tracked, that we still ignore a lot of what's right in front of our

noses (or inside our noses :-).

Anyway, forgive my rant. I've been on my butt for a month. Just

starting to feel human again, and the fire to get well is coming

back. But of course, the fire to catch up on all the things I've let

slide is coming back, too, which usually ends up with me back on my

butt.

I wish someone would break this viscious cycle since I can't seem to

stay focused enough to do it myself.

:-)

penny

> > Penny:

> > I hope they aren't correct.

> > I guess there'd be a threshold- just like everything else - I

> wonder

> > if these guys have a clue where that is (Have you seen any

studies

> on

> > abx sensitivity drop offs in thick blood?)

> >

>

[Guest guest]

Penny, I relate to what you say. HUGS, hope you soon are up and about

and ready once again to fight..

Healing Love, Marie

> > > Penny:

> > > I hope they aren't correct.

> > > I guess there'd be a threshold- just like everything else - I

> > wonder

> > > if these guys have a clue where that is (Have you seen any

> studies

> > on

> > > abx sensitivity drop offs in thick blood?)

> > >

> >