Re: Further thoughts on Herxing and such

June 25, 2006

Well put, Carole. So I have to ask, why

does Jelly feel so bad on such a LOW dose?

It seems to me that a simple experiment

would be to raise the dose and see if she feels better on a higher dose, say 25

mg every other day, or even 100 mg every other day. IF the problem is

minocycline she should feel a LOT worse on a higher dose. If the problem is that

the very low dose is actually killing more bacteria then she should kill less

on the higher dose and FEEL BETTER.

Does this make sense, Jelly? So do you

want to risk it????

Is there another possibility? What if

Jelly is cutting up a coated pill and then absorbing a LOT

of minocycline very quickly?

a

Hello Jelly and all,

Have been following your posts on Magnesium and Herxing. Why has the

concept of Herxing become such an important topic in our fight against

infections, I ask myself? I know when I was having such horrible

reactions on Minocycline, I needed to find something that would help me

answer the question " Should I continue, reduce the dose, stop? " With

so

little to go on, Herxing became a tempting " explanation " and a

potential

" friend " in my ongoing battle against what I suspect is a chronic

infection.

But here's the rub, at least for me. A clear definition of what is and

is not a Herxheimer reaction is seriously lacking. It seems just too

vague to be truly useful as a diagnostic and treatment tool, at least

for me. I am becoming very sceptical, not only of the use of the Herxing

paradigm, but also of what I might awkwardly coin as " medical

metaphoring " , certain leaps of reasoning that laypersons such as I

make

when trying to translate symptoms into medical/scientific concepts. I

experience some symptom, I want to understand what it is and I latch on

to something I read and only partly understand. I do hate not knowing, I

hate that I sometimes lead myself down dark alleys for lack of

knowledge. And yet, I am stuck in this situation. I have no answers,

just a reasonably good mind (still), determination and the chance via

this forum and others to be in contact with others who know more than I.

Sorry if this post is a downer to some. Jelly, I certainly am not in a

position to say whether yea or nay you are truly Herxing from abx or

supplements. Wish I could help. All I have is a doubting mind. I do

hope that you find the information you need to continue your fight.

Ponderously,

Carole

June 25, 2006

a,

Is there no test that could indicate the level of killing or a drop

in inflammation, SED rate (though this seems to be unreliable at

least in CFS), some indirect measurement that could be taken on a

day with a low dose and on another day with a higher dose to see

their relative effect ?

Carole

--- In infections , " a Carnes " <

> Well put, Carole. So I have to ask, why does Jelly feel so bad on

such a LOW dose?

> It seems to me that a simple experiment would be to raise the dose

and see if she feels better on a higher dose, say 25 mg every other

day, or even 100 mg every other day. IF the problem is minocycline

she should feel a LOT worse on a higher dose. If the problem is that

the very low dose is actually killing more bacteria then she should

kill less on the higher dose and FEEL BETTER.

June 25, 2006

To Carole and a.....First Carole, your post is not at all

discouraging to me, but it appears to be discouraging to you,

actually not knowing what is happening. That in part is why it would

be nice to know if you were actually herxing....for all the reasons

you listed below. Herxing is tough, even worse if there is no light

at the end of the tunnel.

Herxing is a tool that the majority of our doctors use when treating

these stealth like pathogens. Better then half the time, no test

says, yes, you have Lyme, or yes, you have Mycoplasma or even YES

you have Staph. All these bugs have the same flu like symptoms and

the testing on ALL of them sucks. So, doctors often treat

emperically. It, looks like Lyme, so lets take the leap, give you

the ABX, and see what happens. If absoulutely nothing happens with

any of the ABX used in treating Lyme, it would be expected that Lyme

isn't your problem....right? Not 100% assured, but you might then

move on to another bug, and see what happens there.

What they are generally hoping for is some sort of adverse reaction,

not an allergy type reaction, but one described in the description

of a herx. IF that happens a Lyme doctor will be encouraged that you

are on the right trail. As Barb states, there are some who don't

have a herx rection and still get better, but that is not the norm

of what is expected.

Another indication as to whether or not you are herxing might be,

what happens down the road, when you stop ABX or when you stop

herxing. Is there imrovement? I'm not just talking about relief from

the herx, but was there any reduction even in a small way of your

previous symptoms? Are your joints better, is there less brain fog,

are you sleeping better, more energy, etc. Symptoms may return, does

that mean you were not herxing, not necessarily, but that is a whole

nother discussion. Getting sick again is no proof that you were

never herxing, just proof that this stuff is hard to kill, in fact

it will never be gone, relapse is a real possibility, but so is long

term remission, so focus on that.

There is a far greater majority out there that belive herxing

happens all of the time, some here do not. Which way you lean, only

matters to you. Getting well is the key. If you take ABX, feel

crappy, and then get better, you can call it whatever you want, a

reaction, a herx, a herx, a reaction, just get well.

a, I have already done that experiment, not intentionally, but

the result would be the same. The 200 mgs of Doxy, put me in the

hospital for the afternoon. It took 8 days at max dose, but then it

hit me like a freight train. Symptoms were identical to what is

described in the herx info. Some here agree, that was likely a herx,

because dose was high enough to kill in vitro.

After researching the RBF, I decided to pulse at lower doses. 50

mgs, is where I started. Reaction was IDENTICAL symptom wise, only

to a lessor degree. Still way more then I was comfortable

tolerating. I have never allowed myself to be bed ridden with this

illness, and I don't want to start now. 50 mgs, forces me to bed.

So, I thought I would start at the bottom and work my way up, like

many others do at the RBF and Rhuematic Support. People there DO use

doses less then 100 mgs. Spoke to one lady recently, who has been on

25 mgs, for years, and it took her for ever to get there, very slow

progress, but she has a life now. There are others that I also

talked to recently and many in the past. Approx. 3 mgs. gives me the

identical reaction as 200 mgs a day of Doxy only to a much lesssor

degree (mino has far better penetration then Doxy, may be a

factor??). It was barely tolerable while still trying living my

life, but symptoms do lessen, and I am able to increase the dose.

Many before have had the same experience, I am far from alone.

The time release pill, sorry, don't take them. Not even time release

capsules. What I take is a little capsule that can be pulled open

with a yellow powder in it. I have been assured the powder is mixed

very thoroughly in large vats and then poured into the individual

capsules, so getting an area of just filler in one and straight mino

in another capsule I make, wouldn't happen.

For the experiment to turn out has you say it might, seems like that

would only be true if you believe TM's theory about Mino all

together, and I don't. I asked him this question once, but as usual

he had no answer. I asked, if the lower doses are best for killing,

and you should feel better on a larger dose due to being out of the

killing zone...... then WHY would you ramp up as he perscribes to

higher doses as opposed to ramping down, deeper into the killing

zone? If you can eventually tolerate more of a die off, then why go

up, not down?

Maybe you understand the reasoning for going up instead of down.

>

> Well put, Carole. So I have to ask, why does Jelly feel so bad on

such a LOW

> dose?

>

> It seems to me that a simple experiment would be to raise the dose

and see

> if she feels better on a higher dose, say 25 mg every other day,

or even 100

> mg every other day. IF the problem is minocycline she should feel

a LOT

> worse on a higher dose. If the problem is that the very low dose

is actually

> killing more bacteria then she should kill less on the higher dose

and FEEL

> BETTER.

>

> Does this make sense, Jelly? So do you want to risk it????

>

> Is there another possibility? What if Jelly is cutting up a coated

pill and

> then absorbing a LOT of minocycline very quickly?

>

> a

>

> Hello Jelly and all,

>

> Have been following your posts on Magnesium and Herxing. Why has

the

> concept of Herxing become such an important topic in our fight

against

> infections, I ask myself? I know when I was having such horrible

> reactions on Minocycline, I needed to find something that would

help me

> answer the question " Should I continue, reduce the dose, stop? "

With so

> little to go on, Herxing became a tempting " explanation " and a

potential

> " friend " in my ongoing battle against what I suspect is a chronic

> infection.

>

> But here's the rub, at least for me. A clear definition of what is

and

> is not a Herxheimer reaction is seriously lacking. It seems just

too

> vague to be truly useful as a diagnostic and treatment tool, at

least

> for me. I am becoming very sceptical, not only of the use of the

Herxing

> paradigm, but also of what I might awkwardly coin as " medical

> metaphoring " , certain leaps of reasoning that laypersons such as I

make

> when trying to translate symptoms into medical/scientific

concepts. I

> experience some symptom, I want to understand what it is and I

latch on

> to something I read and only partly understand. I do hate not

knowing, I

> hate that I sometimes lead myself down dark alleys for lack of

> knowledge. And yet, I am stuck in this situation. I have no

answers,

> just a reasonably good mind (still), determination and the chance

via

> this forum and others to be in contact with others who know more

than I.

>

> Sorry if this post is a downer to some. Jelly, I certainly am not

in a

> position to say whether yea or nay you are truly Herxing from abx

or

> supplements. Wish I could help. All I have is a doubting mind. I do

> hope that you find the information you need to continue your fight.

>

> Ponderously,

>

> Carole

>

June 25, 2006

Carole, when I see my doc next time which should be in a few weeks,

I will ask him to test my SED rate. My SED rate is usually always

normal, but I will have him see what it looks like while

herxing/reacting to the low dose Mino. Not sure that it will prove

anything one way or the other, but it will be intersting since being

on ABX is the ONLY time I ever experience anything that " visibly "

appears to be inflammation.

>

> a,

>

> Is there no test that could indicate the level of killing or a

drop

> in inflammation, SED rate (though this seems to be unreliable at

> least in CFS), some indirect measurement that could be taken on a

> day with a low dose and on another day with a higher dose to see

> their relative effect ?

>

> Carole

>

> --- In infections , " a Carnes " <

> > Well put, Carole. So I have to ask, why does Jelly feel so bad

on

> such a LOW dose?

>

> > It seems to me that a simple experiment would be to raise the

dose

> and see if she feels better on a higher dose, say 25 mg every

other

> day, or even 100 mg every other day. IF the problem is minocycline

> she should feel a LOT worse on a higher dose. If the problem is

that

> the very low dose is actually killing more bacteria then she

should

> kill less on the higher dose and FEEL BETTER.

>

June 26, 2006

Good question. Andy seemed to think

that Lida Mattman’s lab had some way to do that. Ray Stricker thinks CD

57 correlates with the chance of relapse. But relapse is different from how

sick you feel. My son’s CD 57 level is very low, but he feels great. All

we can figure is that eventually he is going to get symptoms again. My CD 57

level is nice and normal, but I don’t always feel so hot. If these tests

aren’t so accurate over time, I doubt there will be anything day to day –

at least not now. Jelly could just experiment though in which case she might

know more than she knows now, or maybe not. LOL

a

a,

Is there no test that could indicate the level of killing or a drop

in inflammation, SED rate (though this seems to be unreliable at

least in CFS), some indirect measurement that could be taken on a

day with a low dose and on another day with a higher dose to see

their relative effect ?

Carole

--- In infections ,

" a Carnes " <

> Well put, Carole. So I have to ask, why does Jelly feel so bad on

such a LOW dose?

> It seems to me that a simple experiment would be to raise the dose

and see if she feels better on a higher dose, say 25 mg every other

day, or even 100 mg every other day. IF the problem is minocycline

she should feel a LOT worse on a higher dose. If the problem is that

the very low dose is actually killing more bacteria then she should

kill less on the higher dose and FEEL BETTER.

June 26, 2006

Carol

The most important thing for all of us is -what is occuring -IS IT A

FRIEND OR FOE.My tip on the subject is with chronic infections and

most importantly toxic infections mobilising toxins that hurt you

are FOES.When your mobilising the processes that made you ill in the

first place you may be doing more harm than good IMO. In a major

disseminated infection the micro circulation usually explodes

violently under the skin(petechia I think is the name)- this is

basically an ACUTE exacerbation of infecion.With our CHRONIC

exacerbation I'm sure these types of reactions are what is at the

heart of the cardio-vascular complaints that are a common thread on

many forums.Also the fact that no-one gets well-THAT I CAN SEE FROM

THESE REACTIONS MAKES ME WONDER WHY WE GRASP THEM WITH BOTH HANDS.

>

> Hello Jelly and all,

>

> Have been following your posts on Magnesium and Herxing. Why has

the

> concept of Herxing become such an important topic in our fight

against

> infections, I ask myself? I know when I was having such horrible

> reactions on Minocycline, I needed to find something that would

help me

> answer the question " Should I continue, reduce the dose, stop? "

With so

> little to go on, Herxing became a tempting " explanation " and a

potential

> " friend " in my ongoing battle against what I suspect is a chronic

> infection.

>

> But here's the rub, at least for me. A clear definition of what is

and

> is not a Herxheimer reaction is seriously lacking. It seems just

too

> vague to be truly useful as a diagnostic and treatment tool, at

least

> for me. I am becoming very sceptical, not only of the use of the

Herxing

> paradigm, but also of what I might awkwardly coin as " medical

> metaphoring " , certain leaps of reasoning that laypersons such as I

make

> when trying to translate symptoms into medical/scientific

concepts. I

> experience some symptom, I want to understand what it is and I

latch on

> to something I read and only partly understand. I do hate not

knowing, I

> hate that I sometimes lead myself down dark alleys for lack of

> knowledge. And yet, I am stuck in this situation. I have no

answers,

> just a reasonably good mind (still), determination and the chance

via

> this forum and others to be in contact with others who know more

than I.

>

> Sorry if this post is a downer to some. Jelly, I certainly am not

in a

> position to say whether yea or nay you are truly Herxing from abx

or

> supplements. Wish I could help. All I have is a doubting mind. I

do

> hope that you find the information you need to continue your fight.

>

> Ponderously,

>

> Carole

>

June 26, 2006

Greetings,

I suspect that I will be having to tread the abx road again in the near

future, although I seem to be actually in some kind of remission. Is

this " remission " due to the abx (2 months mino), the Recup or the wind

blowing in the trees? Were my bad symptoms while on Mino due to Herxing?

No clear answers for me at this time, though I do hear what you are

saying, Jelly, about some docs looking for that type of reaction to

guide treatment, as I hear Tony's warnings.

With no clear answers, I remain wary of the " getting worse before

getting better " thinking ... it has the potential of being a very risky

kind of positive feedback situation, what " should " be interpreted as

signs for stopping are instead used as signs of encouragement to go on.

Friend or foe? That is indeed the question.

Carole

--- In infections , " jellybelly92008 "

<herranenb@...>

> To Carole and a.....First Carole, your post is not at all

discouraging to me, but it appears to be discouraging to you, actually

not knowing what is happening. That in part is why it would be nice to

know if you were actually herxing....for all the reasons you listed

below. Herxing is tough, even worse if there is no light at the end of

the tunnel.

>

> Herxing is a tool that the majority of our doctors use when treating

these stealth like pathogens. Better then half the time, no test says,

yes, you have Lyme, or yes, you have Mycoplasma or even YES you have

Staph. All these bugs have the same flu like symptoms and the testing

on ALL of them sucks. So, doctors often treat emperically. It, looks

like Lyme, so lets take the leap, give you the ABX, and see what

happens. If absoulutely nothing happens with any of the ABX used in

treating Lyme, it would be expected that Lyme isn't your

problem....right? Not 100% assured, but you might then move on to

another bug, and see what happens there.

>

> What they are generally hoping for is some sort of adverse reaction,

not an allergy type reaction, but one described in the description of a

herx. IF that happens a Lyme doctor will be encouraged that you are on

the right trail. As Barb states, there are some who don't have a herx

rection and still get better, but that is not the norm of what is

expected.

>

> Another indication as to whether or not you are herxing might be, what

happens down the road, when you stop ABX or when you stop herxing. Is

there imrovement? ...

June 26, 2006

Carole, maybe the Recup will be the magic

fix. I am doing great on it.

a

Greetings,

I suspect that I will be having to tread the abx road again in the near

future, although I seem to be actually in some kind of remission. Is

this " remission " due to the abx (2 months mino), the Recup or the

wind

blowing in the trees? Were my bad symptoms while on Mino

due to Herxing?

No clear answers for me at this time, though I do hear what you are

saying, Jelly, about some docs looking for that type of reaction to

guide treatment, as I hear Tony's warnings.

With no clear answers, I remain wary of the " getting worse before

getting better " thinking ... it has the potential of being a very risky

kind of positive feedback situation, what " should " be interpreted as

signs for stopping are instead used as signs of encouragement to go on.

Friend or foe? That is indeed the question.

Carole

--- In infections ,

" jellybelly92008 "

<herranenb@...>

> To Carole and a.....First Carole, your post is not at all

discouraging to me, but it appears to be discouraging to you, actually

not knowing what is happening. That in part is why it would be nice to

know if you were actually herxing....for all the reasons you listed

below. Herxing is tough, even worse if there is no light at the end of

the tunnel.

>

> Herxing is a tool that the majority of our doctors use when treating

these stealth like pathogens. Better then half the time, no test says,

yes, you have Lyme, or yes, you have Mycoplasma or even YES you have

Staph. All these bugs have the same flu like symptoms and the testing

on ALL of them sucks. So, doctors often treat emperically. It, looks

like Lyme, so lets take the leap, give you the ABX, and see what

happens. If absoulutely nothing happens with any of the ABX used in

treating Lyme, it would be expected that Lyme isn't your

problem....right? Not 100% assured, but you might then move on to

another bug, and see what happens there.

>

> What they are generally hoping for is some sort of adverse reaction,

not an allergy type reaction, but one described in the description of a

herx. IF that happens a Lyme doctor will be encouraged that you are on

the right trail. As Barb states, there are some who don't have a herx

rection and still get better, but that is not the norm of what is

expected.

>

> Another indication as to whether or not you are herxing might be, what

happens down the road, when you stop ABX or when you stop herxing. Is

there imrovement? ...

June 26, 2006

Jelly, if you can tolerate the dose you are

on of minocycline then stick with it. I think there is a big difference between

200 mg a day of doxy for 8 days and raising the level of minocycline from 4 mg

to 25mg or even 100 every other day. I think 25 or 100 mg every other day would

be very different from high dose minocycline every day. The theory is that at a

very low dose you are getting constant killing of bacteria and die-off. At very

high dose you are eventually going to get the same, and it won’t be

pleasant. So something in between is the goal. Is this true? Who knows.

I am glad you are not taking a coated

timed release pill.

I don’t know if minocycline is going

to work. You and I have already said that the sooner you can ADD Zithromax the

better. But I really don’t have a problem with what you are doing. It

didn’t work for me, but I know of quite a few patients doing well on these

low dose antibiotics. Also, I have a great deal of respect for the few doctors

I know who continue trying this protocol on patients.

a

To Carole and a.....First Carole, your post is not

at all