nature of a herx - BP

[Guest guest]

--- In infections , " Barb Peck "

<egroups1bp@y...> wrote [iN PART]:

> IMO, A true Herx does not go on for days and days and days.

>

> So if the trend is downward day after day, and if you feel bad

enough

> to get into bed .. i.e. you can't function, then back off the

dose

> or stop and recover.

>

> Lyme will still be there to fight another day when you fell

better.

>

> Barb

Barb,

First, thanks for your input to a prior query of mine re: Mg &

cyclines; I appreciate it.

As for your thoughts on " a true herx, " when on antibiotics (any

type, cyclines, cephalosporins pre-allergy development, vancomycin,

primaxin) I go downhill THE ENTIRE TIME I am on them. My course of

treatment ends when I am so weak and sick that the docs stop the

meds (I am usually quite ill when I begin). This has occurred

whether the dose is constant or pulsed, near-homeopathic in dosage

or not, coupled with low dose, ADT steroids or not (those measures

usually just increase the duration that I can stay on the meds).

Subsequent to that, I slowly get better and stronger, surpassing the

point at which I started (which isn't saying much) and eventually

getting very very well, near normal from a point of being bedridden

(frank meningitis and cardiac symptoms predominating) immediately

prior to treatment.

Is this a " herx? " I don't know; certainly not in the sense

originally documented in the literature, but then neither is most of

the " herxes " that folks with Lyme/other illnesses refer to. Do I

have the same adverse reaction to all antibiotics? Possible I

suppose, but unlikely. Any thoughts on this? I'm about to embark

on a course of antibiotics as I am now bedridden-ill with all these

stupid horrible symptoms and I'm approaching it with great

trepidation given the above scenario.

Anyway, I know this reaction to antibiotics is in the minority, but

it is a consistent and replicable (unfortunately!) data point that

must be accounted for. I'm curious what you and others make of it.

[Guest guest]

It sounds like your Doc takes you off meds when you get to a point

where you can't function... and that it's a fairly slow descent..

In my humble opinion, that is not a true herx - Herx is the WHOLE

body's systemic immune response immediate to the release of

endotoxins given off by the death gram negative bacteria when they

encounter killing consentrations of a lethal abx.

The literature specifically " The Journal of Antimicrobial

Chemotherapy " has shown that the CHOICE of abx can either reduce

or increase the amount of endotoxin release as Gneg bacteria die.

Do any docs use this info when prescribing? Probably not, cuz it's

research, but hopefully they're aware of it.

Some abx can dual function as an immune modulator- or other

modulators can be used.

There is no doubt though, that while on abx (for Lyme anyway) that

a person can experience 'fash-back symptoms' or current symptoms can

be worsened, but I do not think this is a systemic herx - it' more

like flaring- similar to what happens to an RA person when specific

joints flare- they get alot of localized pain- and it may be

debiliating, but it's not a systemic immune response.

Think of it this way - a person can be chronically inflammed

throughout, but also have 'hot spots' or 'latent areas' of localized

inflammation- maybe where a bacterial colony takes up residence-

and these can flare pretty easily.

I guess people just use the words herx to describe multiple

conditions for lack of a better term for what we go thru when we feel

bad. I'm just such a stickler on defnitions I guess.

I think if I were bed ridden when starting a course of abx, and I

knew I would worsen while on them, I'd have a baseline CBC and blood

chemistry and Candida panel, then have it repeated when it got so bad

I couldn't stand it and the Doc pulled me off the meds. 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. It all

seems to be such a blind crap shoot.

Of course I could be totally off the wall- and the term herx will be

redefined and used as an umbrella term for alot of subset pain -

Untill that happens, it'll remian my pet peeve and I'll stic to the

classical definition.

Barb

> --- In infections , " Barb Peck "

> <egroups1bp@y...> wrote [iN PART]:

> > IMO, A true Herx does not go on for days and days and days.

> >

> > So if the trend is downward day after day, and if you feel bad

> enough

> > to get into bed .. i.e. you can't function, then back off the

> dose

> > or stop and recover.

> >

> > Lyme will still be there to fight another day when you fell

> better.

> >

> > Barb

>

> Barb,

>

> First, thanks for your input to a prior query of mine re: Mg &

> cyclines; I appreciate it.

>

> As for your thoughts on " a true herx, " when on antibiotics (any

> type, cyclines, cephalosporins pre-allergy development, vancomycin,

> primaxin) I go downhill THE ENTIRE TIME I am on them. My course of

> treatment ends when I am so weak and sick that the docs stop the

> meds (I am usually quite ill when I begin). This has occurred

> whether the dose is constant or pulsed, near-homeopathic in dosage

> or not, coupled with low dose, ADT steroids or not (those measures

> usually just increase the duration that I can stay on the meds).

>

> Subsequent to that, I slowly get better and stronger, surpassing

the

> point at which I started (which isn't saying much) and eventually

> getting very very well, near normal from a point of being bedridden

> (frank meningitis and cardiac symptoms predominating) immediately

> prior to treatment.

>

> Is this a " herx? " I don't know; certainly not in the sense

> originally documented in the literature, but then neither is most

of

> the " herxes " that folks with Lyme/other illnesses refer to. Do I

> have the same adverse reaction to all antibiotics? Possible I

> suppose, but unlikely. Any thoughts on this? I'm about to embark

> on a course of antibiotics as I am now bedridden-ill with all these

> stupid horrible symptoms and I'm approaching it with great

> trepidation given the above scenario.

>

> Anyway, I know this reaction to antibiotics is in the minority, but

> it is a consistent and replicable (unfortunately!) data point that

> must be accounted for. I'm curious what you and others make of it.

[Guest guest]

I agree with you, Barb. Especially about the need to use labwork to

try and determine what is happening during cycles of symptom

exacerbation.

DM, what were you like before you started abx? Did your symptoms

cycle? Were you in a steady decline?

> > --- In infections , " Barb Peck "

> > <egroups1bp@y...> wrote [iN PART]:

> > > IMO, A true Herx does not go on for days and days and days.

> > >

> > > So if the trend is downward day after day, and if you feel bad

> > enough

> > > to get into bed .. i.e. you can't function, then back off the

> > dose

> > > or stop and recover.

> > >

> > > Lyme will still be there to fight another day when you fell

> > better.

> > >

> > > Barb

> >

> > Barb,

> >

> > First, thanks for your input to a prior query of mine re: Mg &

> > cyclines; I appreciate it.

> >

> > As for your thoughts on " a true herx, " when on antibiotics (any

> > type, cyclines, cephalosporins pre-allergy development,

vancomycin,

> > primaxin) I go downhill THE ENTIRE TIME I am on them. My course

of

> > treatment ends when I am so weak and sick that the docs stop the

> > meds (I am usually quite ill when I begin). This has occurred

> > whether the dose is constant or pulsed, near-homeopathic in

dosage

> > or not, coupled with low dose, ADT steroids or not (those

measures

> > usually just increase the duration that I can stay on the meds).

> >

> > Subsequent to that, I slowly get better and stronger, surpassing

> the

> > point at which I started (which isn't saying much) and

eventually

> > getting very very well, near normal from a point of being

bedridden

> > (frank meningitis and cardiac symptoms predominating)

immediately

> > prior to treatment.

> >

> > Is this a " herx? " I don't know; certainly not in the sense

> > originally documented in the literature, but then neither is

most

> of

> > the " herxes " that folks with Lyme/other illnesses refer to. Do

I

> > have the same adverse reaction to all antibiotics? Possible I

> > suppose, but unlikely. Any thoughts on this? I'm about to

embark

> > on a course of antibiotics as I am now bedridden-ill with all

these

> > stupid horrible symptoms and I'm approaching it with great

> > trepidation given the above scenario.

> >

> > Anyway, I know this reaction to antibiotics is in the minority,

but

> > it is a consistent and replicable (unfortunately!) data point

that

> > must be accounted for. I'm curious what you and others make of

it.

[Guest guest]

In short, I agree with you both (Barb & ) that what I'm

experiencing is not a herx. I too refer to it as a flare,

exacerbation, etc, b/c it doesn't fit the classic J-H symptoms. I

just wanted to hear what your impression was particularly given the

colloquial use of the term " herx. "

In the past, I have been followed closely with bloodwork (while on

IV) and there's not been any consistent change at least in what was

measured (further evidence of non-herx). Now, with a new doc,

doesn't seem like there will be much bloodwork in the future while

I'm on treatment.

Prior to treatment (to answer 's query), my symptoms fluctuate

somewhat but in no cyclical pattern other than a major exacerbation

immediately prior to my period and for a few days into it. And I

cycle within a day, but that's it. From a larger time frame

perspective (the year & a half I've been ill), it has been an

overall decline in health with an increase in the number of

symptoms, the body systems affected, and severity of said symptoms.

On the other hand, once I'm treated for a period of time and have

slowly recovered (a year minimum recovery time), I am much better

and that " remission " is sustained for 1.5-5 years at a time (no

treatment).

While on abx, I eventually " collect " every symptom I've had and they

increase in severity the entire time. What a weird reaction. As I

said, it happens with every abx I've tried which, without having yet

seen the research you reference Barb, makes me suspect that the

difference in endotoxin release as a function of the abx is not

playing a sufficient role in my case.

It is a curious (and uncommon as far as I can ascertain) reaction

that I as of yet don't understand the basis for. More importantly,

for pure creature comfort, I'd love to figure out anything that

might alleviate or at least diminish the severity.

> > > --- In infections , " Barb Peck "

> > > <egroups1bp@y...> wrote [iN PART]:

> > > > IMO, A true Herx does not go on for days and days and days.

> > > >

> > > > So if the trend is downward day after day, and if you feel

bad

> > > enough

> > > > to get into bed .. i.e. you can't function, then back off

the

> > > dose

> > > > or stop and recover.

> > > >

> > > > Lyme will still be there to fight another day when you fell

> > > better.

> > > >

> > > > Barb

> > >

> > > Barb,

> > >

> > > First, thanks for your input to a prior query of mine re: Mg &

> > > cyclines; I appreciate it.

> > >

> > > As for your thoughts on " a true herx, " when on antibiotics

(any

> > > type, cyclines, cephalosporins pre-allergy development,

> vancomycin,

> > > primaxin) I go downhill THE ENTIRE TIME I am on them. My

course

> of

> > > treatment ends when I am so weak and sick that the docs stop

the

> > > meds (I am usually quite ill when I begin). This has occurred

> > > whether the dose is constant or pulsed, near-homeopathic in

> dosage

> > > or not, coupled with low dose, ADT steroids or not (those

> measures

> > > usually just increase the duration that I can stay on the

meds).

> > >

> > > Subsequent to that, I slowly get better and stronger,

surpassing

> > the

> > > point at which I started (which isn't saying much) and

> eventually

> > > getting very very well, near normal from a point of being

> bedridden

> > > (frank meningitis and cardiac symptoms predominating)

> immediately

> > > prior to treatment.

> > >

> > > Is this a " herx? " I don't know; certainly not in the sense

> > > originally documented in the literature, but then neither is

> most

> > of

> > > the " herxes " that folks with Lyme/other illnesses refer to.

Do

> I

> > > have the same adverse reaction to all antibiotics? Possible I

> > > suppose, but unlikely. Any thoughts on this? I'm about to

> embark

> > > on a course of antibiotics as I am now bedridden-ill with all

> these

> > > stupid horrible symptoms and I'm approaching it with great

> > > trepidation given the above scenario.

> > >

> > > Anyway, I know this reaction to antibiotics is in the

minority,

> but

> > > it is a consistent and replicable (unfortunately!) data point

> that

> > > must be accounted for. I'm curious what you and others make

of

> it.

[Guest guest]

" Barb Peck " <egroups1bp@y...> wrote:

> 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]

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?)

In my case I know I had rouleau, and aggregated RBCs, and I never

never bruised. But it wasn't so thick that blood couldn't be drawn

into a tube like some here.

And my abx worked.

I know a couple of heart patients on Coumadin for life... and oh God

I just can't imagine doing that for life. A good bump, and you can

bleed internally.

I know someone else right now taking blood thinning injections (I

think it's lovenox @ 100 per injection) and he's got a PICC and

receiving IV abx 2X per day for a systemic acute infection (StrepA)

and things aren't going so well.

They do not think they can keep it undercontrol unles they find the

seat of the infection (and they've had his blood thinned for at least

6 weeks now... course finding a clot in his left leg had the most to

do with taking a thinner it..) So it's not working for acute Strep A.

Barb

> > 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]

Hiya, Just wanted to note that we have a harmony of the s on

this question, J's very concise summary hitting all the notes I

might have dithered on about for several paragraphs.

When the s are aligned, it's always a comfort to me.

S.

> > 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

>

>

>

>

>

>

>

>

>

>

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