Re: Looking for THINKERS and I know you are here

June 10, 2006

Still Penny, this doesn't explain why I am doing so well. If I have

been infected as long as I have, (and we are talking at least 38

years), my load could be huge, then even at the low dose, and if we

are talking about killing off only the weaker organisms, this would

still be a herx. Otherwise what is it? We can't just say it's not a

herx, because it doesn't fit into the accepted box we have been

given so far. I am well, most others who take massive ABX aren't

even close yet....so what happened? Come on guys, foil thinking caps

needed.

We have specialists now, but treatment isn't working for everyone.

Massive ABX aren't getting everyone well. So we need to keep

looking. Is there something elusively different about little old me

or is there something to low dose ABX?

What really got me thinking about this even though, I have wondered

for a couple of years now is my mom. When she was tested for Lyme at

Igenex, she came back negative. I don't mean just a little negative,

but she wasn't showing antibodies for anything, nothing! She was

started on amoxy and after about 2 months she was retested and

WHALAH! she was not only positive, but she was now CDC positive. Her

immune system started producing what was needed to fight these

infections. She wasn't just producing little bits of antibodies now,

but ++ & +++ all over the place, where there had been nothing.

Amoxy isn't even close to one of the supposed better drugs. She has

severe neuropathy in her feet. Doc could stick a pin right through

her foot and she felt nothing. Within a couple of weeks with amoxy

she started regaining sensation in her feet.

Her herx symptoms were just like mine. I also herx in the same way

on Diflucan, my daughter herxes in the exact same way on it and

Mino. If we aren't herxing, then what the heck can we call it?

Herxing preceeds getting well, right?

>

> Real minocycline is actually made of tiny balls. I've heard people

say that they actually count these tiny balls under a magnifying

glass to split the doses, and I've also heard others say that there

can be accuracy problems even with this method.

>

> I think Barb has a valid point. Especially if you truly believe

3 mgs has some kind of effect, then 4 mgs is a substantially larger

dose.

>

> Maybe the tiny dose is enough to stir up your organisms'

defenses causing an immune system activation? I don't see how 3 mgs

can possibly be doing much on its own. Not against the resistant

levels of the bacteria we're dealing with. I doubt if you're

experiencing a " herx " in its true definition, which would mean

causing enough of an organism die-off to cause a reaction to the

toxins being released to make you feel sick. The misuse of this

word, I think, to include any crummy feelings, is causing all kinds

of problems for people with infections.

>

> penny

>

June 11, 2006

On Jun 10, 2006, at 5:12 PM, Penny Houle wrote:Tony, I still do not see how you can support this view about fat cells. I probably have no fat cells at all! Well, I know that's not possible, but even when I was pregnant I had no visible fat at all, and the baby was BIG! It certainly didn't keep me from getting sick.- Kate

June 11, 2006

What really got me thinking about this even though, I have wondered for a couple of years now is my mom. When she was tested for Lyme at Igenex, she came back negative. I don't mean just a little negative, but she wasn't showing antibodies for anything, nothing! She was started on amoxy and after about 2 months she was retested and WHALAH! she was not only positive, but she was now CDC positive. Her immune system started producing what was needed to fight these infections. She wasn't just producing little bits of antibodies now, but ++ & +++ all over the place, where there had been nothing.Amoxy isn't even close to one of the supposed better drugs. She has severe neuropathy in her feet. Doc could stick a pin right through her foot and she felt nothing. Within a couple of weeks with amoxy she started regaining sensation in her feet.Her herx symptoms were just like mine. I also herx in the same way on Diflucan, my daughter herxes in the exact same way on it and Mino. If we aren't herxing, then what the heck can we call it? Herxing preceeds getting well, right? .Wow, you two are strange and lucky! Nothing like that happens with my son and I. In fact, he tested positive for Lyme before abx but not after (symptoms still about the same).- Kate

June 11, 2006

Then when a person has strep throat or an ear infection or bronchitis and they start a course of antibiotics, why do they immediately feel better instead of worse? The commonly used herx theory would have them flattened and very toxic, since their bacterial loads are high and the kill-off rapid. I don't care what we call it, how about reaction to treatment? All I know is, the term herx has a very specific meaning which is being ignored. Any crummy feeling during treatment is not the definition of herx. I hear of people herxing on just about everything, including whey protein. It's ridiculous. And it's dangerous, because when people feel worse on a treatment, they may mistakenly assume it means they're getting better. The worse and more prolonged their suffering, the better they're getting? People are reading it this way and may overlook truly negative reactions to an ineffective treatment. penny jellybelly92008 <herranenb@...> wrote: Still Penny, this doesn't explain why I am doing so well. If I have been infected as long as I have, (and we are talking at least 38 years), my load could be huge, then even at the low dose, and if we are talking about killing off only the weaker organisms, this would still be a herx. Otherwise what is it? We can't just say it's not a herx, because it doesn't fit into the accepted box we have been given so far. I am well, most others who take massive ABX

aren't even close yet....so what happened? Come on guys, foil thinking caps needed. We have specialists now, but treatment isn't working for everyone. Massive ABX aren't getting everyone well. So we need to keep looking. Is there something elusively different about little old me or is there something to low dose ABX?What really got me thinking about this even though, I have wondered for a couple of years now is my mom. When she was tested for Lyme at Igenex, she came back negative. I don't mean just a little negative, but she wasn't showing antibodies for anything, nothing! She was started on amoxy and after about 2 months she was retested and WHALAH! she was not only positive, but she was now CDC positive. Her immune system started producing what was needed to fight these infections. She wasn't just producing little bits of antibodies now, but ++ & +++ all over the place, where there had been

nothing.Amoxy isn't even close to one of the supposed better drugs. She has severe neuropathy in her feet. Doc could stick a pin right through her foot and she felt nothing. Within a couple of weeks with amoxy she started regaining sensation in her feet.Her herx symptoms were just like mine. I also herx in the same way on Diflucan, my daughter herxes in the exact same way on it and Mino. If we aren't herxing, then what the heck can we call it? Herxing preceeds getting well, right? >> Real minocycline is actually made of tiny balls. I've heard people say that they actually count these tiny balls under a magnifying glass to split the doses, and I've also heard others say that there can be accuracy problems even with this

method.> > I think Barb has a valid point. Especially if you truly believe 3 mgs has some kind of effect, then 4 mgs is a substantially larger dose.> > Maybe the tiny dose is enough to stir up your organisms' defenses causing an immune system activation? I don't see how 3 mgs can possibly be doing much on its own. Not against the resistant levels of the bacteria we're dealing with. I doubt if you're experiencing a "herx" in its true definition, which would mean causing enough of an organism die-off to cause a reaction to the toxins being released to make you feel sick. The misuse of this word, I think, to include any crummy feelings, is causing all kinds of problems for people with infections.> > penny>

June 11, 2006

On Sat, Jun 10, 2006 at 05:04:59PM -0000, jellybelly92008 wrote:

>Wow Norman, I can't believe you went to all that trouble, but you

>have proved that splitting can be done. Your way is far more precise

>then mine, which just means eyeballing while dumping it into new

>capsules. Thanks for sharing those pictures, awesome!

It didn't take much time; and I've found it easier than debating

theoretically whether something like that is possible. Besides, I was

suggesting that you try dividing the capsules up even finer than you are

now, and I wanted to see how hard that might be.

I neglected to mention why one might do such an experiment, though. If

what is going on is what I suggested (bacteria waking up and shutting

down with each dose), then doing things as you are has a couple of

drawbacks. First, it allows some time for the bacteria to grow. If

three of them grow for every four you kill, then you're making progress,

but with four times the amount of herxing you would have under an ideal

system. Second, with low doses, there may be parts of the body where the

level doesn't get high enough to be lethal (although minocycline is

pretty good that way). Those would serve as reservoirs of infection, so

that you might never completely clear the stuff.

Of course that would eventually mean having to find a method of killing

the bacteria in their shut-down state. Nitroimidazoles, as per the

protocols for chlamydia pneumoniae, would be a reasonable thing to try at

that point, as they're also effective against the cyst form of

borrelliae.

--

Norman Yarvin http://yarchive.net

June 11, 2006

Penny

It's based on just commonsense cardiovascular health.. I tend to

think we are subject to the same rules as the rest of the community

as far as health issues go.I think diabetes is an inflammatory

disease that flares and receedes with the fat- normally significant

is the way the fat is deposited as well.

I also noticed that when I stayed off the cadburies and watched the

calories and got the stomach flat the inflammation discomfort

disappeared.In my own case having being diagnosed with fatty liver

may also see me with fatty heart, kidney's and other organs that

may need a break. The fact that the fat is being deposited there

may mean I'm being protected..

I think the fact that you also have someone like jelly explaining

her story and being so thin and a good responder to therapy turning

her health around easier than others- it's just fuel for thought and

shouldn't be discounted IMO.

The fact that she also tells the story about her lips constantly

shedding, I would think it wise for her to not discount staph

exfoliating toxins playing a role in her health issues.

> > > >

> > > > Hi, been awhile, but I have been thinking and I was finally

> able

> > to

> > > > form enough of a thought to pose a question. I have been

> > diagnosed

> > > > with Lyme and I already knew that I had Myco Fermentans. Was

> > > > infected with the Lyme at least 38 years ago.

> > > >

> > > > I have always been curious as to why I have achieved such a

> high

> > > > state of remission, yet I take nano doses of Minocycline,

like

> 3

> > > > mgs. every other day. The sole reason I take such small

doses

> is

> > I

> > > > can't stand herxing, and so I take only what I need to, in

> order

> > to

> > > > bring on a tolerable herx. And I do herx herx at this low of

a

> > > dose,

> > > > makes me real cranky.

> > > >

> > > > I have read that Mino some how prevents replication and I

also

> > read

> > > > somewhere that it prevents Mycoplasma from re-entering new

> > healthy

> > > > cells once they have used another cell up. This leaves them

> > exposed

> > > > and without a cell wall. One of two things happens, they die

> of

> > > > their own accord or they are now visible to our own immune

> > system,

> > > > both of which seem like real good things.

> > > >

> > > > I am not the only one that very low dose mino ellicits a

> > response

> > > > and others are making some serious headway. Thing is, this

> flies

> > in

> > > > the face of all we are being told which is, massive ABX are

a

> > must.

> > > >

> > > > So I posed a questioned on the Lyme board and some of you

may

> > have

> > > > already seen it. I know that there are some REALLY smart

> people

> > > that

> > > > frequent this board and was hoping that some of you may be

> able

> > to

> > > > add to the discussion, which so far has no real explanation

as

> > to

> > > > why this might work.

> > > >

> > > > I would love it if you are up to the challenge to take a

look

> at

> > > the

> > > > discussion and offer what you can. We already know what the

> Lyme

> > > > specialists say, so not really looking for that. This is one

> of

> > > > those times when we need to think outside the box yet again.

> > > > Thinking outside the box is what some of you do best here,

so

> > that

> > > > is why I am here and asking.

> > > >

> > > > Here is a link to the discussion:

> > > > http://flash.lymenet.org/ubb/ultimatebb.php?

> > > > ubb=get_topic;f=1;t=044540

> > > >

> > >

> >

>

June 11, 2006

Jelly:

My reponses preceeded with *********

>

> Oh, one other thing Barb. What if mino doesn't kill the bacteria or

> whatever. Problem with survial of the fitist wouldn't be a problem

> if it was now the immune system that was actually killing. What if

> it causes another reaction that leaves them more vulnearble?

********* my WBC profile periodically over a 20 year period was

spiking as high as 16 to 18,000. Now that's an immune system that

looks like it's responding.. but my Lymphocytes were under range,

even with the over-all WBC so terrible high (and I was sick as a dog).

And I know now (but not then) that Lyme has mechanisms to supress

Lymphocytes... so part of my immune system WAS trying to fight, but

the arm of the immune system that I needed was dis-armed by the major

pathogen in my body... I don't think low dose abx would have put a

dent in my spirochete load- or made them vunerable enough for my

immune system to kill them- not without the lymphocytes.

> Am I the only one who read the stuff about Mino locking out

> Mycoplasma so that they are exposed to the immmune system? I could

> just kick myself for not putting that where I could find it. I know

> that I didn't get that from Marshall. I remember talking about it

> way back on Immune Support.

*********** M thinks the immune system is the big gun- as do I..

we don't disagree there.. we just diagree as to how to get the big

gun in working order. His original " cohort " which includes himself,

took very high doses of several abx, before they settled on the low

dose regime and went public.

If the immune system, or part of it is supressed, then the normally

benign mycoplasmas ( of which there are hundreds of species- and we

live with all of them) may be able to take over and cause problems..

with a working competant immune system- it will balance them out.

Barb

June 11, 2006

>

> Still Penny, this doesn't explain why I am doing so well. If I have

> been infected as long as I have, (and we are talking at least 38

> years), my load could be huge, then even at the low dose, and if we

> are talking about killing off only the weaker organisms, this would

> still be a herx.

**** Killing gram positive organisms is not a herx. Holding in check,

or in colony form - as is done in cystic fibrosis, with low dose zith

is not a herx.

>Otherwise what is it? We can't just say it's not a

> herx, because it doesn't fit into the accepted box we have been

> given so far.

******* Well, we can say that, because herx is a rare event, elicited

by only certain bacteria when they die, with known immune responses,

that can be measured (if one were to draw blood while it was

happeneing- as has done in relapsing fever and syphylis)

I am well, most others who take massive ABX aren't

> even close yet....so what happened? Come on guys, foil thinking

caps

> needed.

*********** I'm not sure you can say " most others on massive abx

don't get better " . ALot of the Lyme patients I PERSONALLY know have

gotten better on long term large doses. But there is a percentage of

people who don't.. and there are many theroies out there whay they

don't. SOme think it's beaucse they are so inflammed, they need an

immune modulator to reduce the inflammation before abx can work- or

they are immunosuppressed for some reason, or their own genetics

(i.e. tissue type and post Lyme syndrome). Many of the people on

these lists are the ones that aren't getting better. There are

plenty that no longer post because they are better, and no longer

frequent these lists.

>

> We have specialists now, but treatment isn't working for everyone.

> Massive ABX aren't getting everyone well. So we need to keep

> looking. Is there something elusively different about little old me

> or is there something to low dose ABX?

************** I've given my opinion previously about low dose abx.

>

> What really got me thinking about this even though, I have wondered

> for a couple of years now is my mom. When she was tested for Lyme

at

> Igenex, she came back negative. I don't mean just a little

negative,

> but she wasn't showing antibodies for anything, nothing! She was

> started on amoxy and after about 2 months she was retested and

> WHALAH! she was not only positive, but she was now CDC positive.

******** This is not uncommon at all. Lyme doesn't live in the blood,

and the test are on serum or whole blood. The organism have to be

killed inorder to be driven into the blood (or their DNA driven into

the blood) for the immune system to make antibodies.. and Ignex

western blot measures ANTIBODIES (unless it's PCR, then it measures

DNA).

> immune system started producing what was needed to fight these

> infections. She wasn't just producing little bits of antibodies

now,

> but ++ & +++ all over the place, where there had been nothing.

>

> Amoxy isn't even close to one of the supposed better drugs.

*********** AMoxy, especially if the dose is high enough is an

excellent Lyme drug (where are you getting this info?)

She has

> severe neuropathy in her feet. Doc could stick a pin right through

> her foot and she felt nothing. Within a couple of weeks with amoxy

> she started regaining sensation in her feet.

>

> Her herx symptoms were just like mine. I also herx in the same way

> on Diflucan, my daughter herxes in the exact same way on it and

> Mino.

If we aren't herxing, then what the heck can we call it?

> Herxing preceeds getting well, right?

>

************ You are using the word herx to describe a reaction of

unknown cause... Herx is an immune state- measurable. I'd like to

call the reaction you're referring to , anything but a herx.

Barb

June 11, 2006

Kate

I just made a comment on why jelly responded to her therapy possably

nicer than most. I also feel that tying in commonsense good health

practises is an important requirement as it's clearly obvious that

inflammation is at the heart of diabetes and they control it and often

avoid it by practising fat management-remember it's the fat around the

middle that plays a crucial role in this. Also there's a very strong

correlation between longevity and good health and a lean body mass.

Many starved people from world war 2 enjoyed good health and often

lived to over 100. plus all the studies in the last 10 or 20 years

support a lean diet for longevity..you then have someone that does a

few treatments and hits the mark nicer than most so you put your spin

on why u think it's happening.

> >

> > Tony, I still do not see how you can support this view about fat

> > cells.

>

> I probably have no fat cells at all! Well, I know that's not

> possible, but even when I was pregnant I had no visible fat at all,

> and the baby was BIG! It certainly didn't keep me from getting sick.

>

> - Kate

>

June 11, 2006

Jelly you are not alone with low dos abx and getting better after being

ill for a long time.

I use tetracycline 125 mg on M,W,F

Using high doses got my controll system in some kind of uncontrolled

way of working.

With low dose it's gets better(more predicted) controll, more stable

and pain free, better blood values(more main stream)

It started like this

After 4 massive abx my MD wanted me of abx for at least 3 month to let

the body to clear toxins.

I get better during a massive abx and worse after number of weeks, new

abx -better, worse, repeated 4 times.

This changes can't be of good for the body to get a stable way of working.

I new from MP that some people had trouble with lower doses so i started

from high dose and cutting that in half and

stopping when I reached a point when i got reactions connected to the

intake of abx.

My massive tectracline was 4x2x250 mg/day

500 mg a day

250 mg a day

125 mg a day

125mg on even days and i got same reaktions. This was Jan 2004

I have later learned that the body needs a break, now i use Mon,wed, Fri.

I have been ligthsensitive long before taking any abx, My brain fog left

when i started using 2% NoIR in oct 2003.

Today (Jun 2006) I'm starting to alternate between using and not using

NoIR.

The 10% NoIR gets to DARK for me to see. When I get painn in the head I

but on darker glasses and the pain is reduced.

I suspect that our unstable controll system(endocrine, neuro, immun) is

part of hour reduced function and by stablize it and gradually improve

functionallity it should be possible to change the way of system working.

Pain is neuroendocrine, neurogical and immun system influense.

Using low dose abx seem to stablize the system and maybe restores the

system.

Tactics will need to be changed, as one tactice will not be enough to

reach a 'cure'.

My first step i to give my body the best chances by feeling and function

well. And then improve this.

Soo far I'm reaching my goals and it's going slow. There is a work range

with a left limit and a rigth limit.

Left limit is no pain. Rigth limit is pain and body stops to work. left

limit will give long term problems.

In between and I am feeling OK, going outside of the limits and the body

chrashes. When doing to much the rigth limit is fast reahed.

In the begining staying in bed was to much.

The limits are movable.

Leaving bed tok almost a year, I still must rest frequantly but i don't

need to rest every half hour

once a day is OK.

Free of using pain meds and muscle relaxing.

.........

Relaxed body with less lockedup joints, ribs and neck.

I working on the neurlogical parts like eyes, hearing, speech, memory

/Per

June 11, 2006

Tony said: Also there's a very strong correlation between longevity and good health and a lean body mass. Many starved people from world war 2 enjoyed good health and often lived to over 100. plus all the studies in the last 10 or 20 years support a lean diet for longevity...Oh boy, maybe I can extend my suffering another 50+ years!So far, the only advantage seems to be that my GP obviously prefers skinny people. Not that it gets me anywhere.... But seriously, everyone always thinks I am so trim and healthy and athletic, when really I am just starved and my body can't put on any weight for some mysterious reason.- Kate

June 11, 2006

kATE

All that said there's just strong correlation on good fats, bad

fats, where you carry your fats that play into the equation of how

your respond to therapy and just general recovery, we can also add

the old age issue into the equation... Basically just harping a

little to possably exp;lain why I respond better or worse than

someone else when doing therpies.

>

> Tony said:

> > Also there's a very strong

> > correlation between longevity and good health and a lean body

mass.

> > Many starved people from world war 2 enjoyed good health and

often

> > lived to over 100. plus all the studies in the last 10 or 20

years

> > support a lean diet for longevity..

> >

> > .

>

> Oh boy, maybe I can extend my suffering another 50+ years!

>

> So far, the only advantage seems to be that my GP obviously

prefers

> skinny people. Not that it gets me anywhere.... But seriously,

> everyone always thinks I am so trim and healthy and athletic,

when

> really I am just starved and my body can't put on any weight for

some

> mysterious reason.

>

> - Kate

>

June 12, 2006

So what is the specific meaning of a herx? I was of the

understanding that it is a worsening of symptoms due to die off of

organisms that do not belong, causing a toxic situation. The higher

the pathogen load, the higher the toxic reaction and worsening of

your regular symptoms will be.

Don't most bactria have cell walls? That is what I have understood

in the past to be the reason that ABX work diferently on these

organisms, I also thought that generally most ABX do something to

that cell wall causing the bacteria to die.

In the case of Mycoplasma they don't have a cell wall in the first

place so ABX that work in that way aren't going to really effect

them are they?

I still am not hearing what I am looking for in regards to protien

synthisis inhibitors. What EXACTLY does that mean for the

bacteria " like " critter? I hear that it interferes with their

reproductive abilities, but how? I was under the impression that

they reproduce inside of cells, is that right? So with protien

synthisis being inhibited " does that prevent them from re-entering

cells to reproduce " , where they are left out in the cold without a

home, to make it simple. Since they don't have cell walls, can they

survive outside of other cells or will they die of their own accord

being homeless and exposed to the elements. If that was the case,

they would be open for attack by our own immune system and there

seems like no better way to kill these little suckers then with the

immune system.

When I hear of people feeling better on massive ABX, only to flair a

few days or maybe if their a lucky a few months later I wonder this.

These organisms are survivalists, they can literally change in

seconds to evade what they see as the enemy. IF you take massive

amounts of ABX they just roll into a cyst where the vast majority of

ABX are useless. They stay there until the danger is past and then

they just come right back out. Ya, there are the cyst busters, but

they can be horrible. Can you imagine me, who has been infected for

nearly 40 years, sending all these little guys into cyst forms with

massive ABX and then being hit with Flagyl????? Bazzillions of cysts

being exploded at once, I shudder to think what that would do to

me!!!!

I am asking that we view these bugs as different from other

bacteria, most of them aren't the same. If they are different

enough, do they react differently to ABX then the other Joe's. What

we read and it looks like ALL of the material supporting massive ABX

is based on true bacterias. Ones that have cell walls. Is there data

on exactly how cell wall deificient bacteria are afectd, and

erradicated. What EXACTLY is the chain of events that cause their

death? I am really sorry if you guys have already explained this and

I am missing it. One week of whatever this is due to ABX and I can't

remember where I put my " thinking cap " :}

> >

> > Real minocycline is actually made of tiny balls. I've heard

people

> say that they actually count these tiny balls under a magnifying

> glass to split the doses, and I've also heard others say that

there

> can be accuracy problems even with this method.

> >

> > I think Barb has a valid point. Especially if you truly believe

> 3 mgs has some kind of effect, then 4 mgs is a substantially

larger

> dose.

> >

> > Maybe the tiny dose is enough to stir up your organisms'

> defenses causing an immune system activation? I don't see how 3

mgs

> can possibly be doing much on its own. Not against the resistant

> levels of the bacteria we're dealing with. I doubt if you're

> experiencing a " herx " in its true definition, which would mean

> causing enough of an organism die-off to cause a reaction to the

> toxins being released to make you feel sick. The misuse of this

> word, I think, to include any crummy feelings, is causing all

kinds

> of problems for people with infections.

> >

> > penny

> >

>

June 12, 2006