antibiotics and CFs

[Guest guest]

Dave wrote:

> a point which I consider is most important about getting

>abx to treat us. We must get the bacteria identified completely and

>abx sensitivities done to see which abx will kill the bacteria.

While I agree with the intention, my point is exactly the opposite - there

are a HUGE number of bugs that aren't even recognised yet, or that tests

are non-existent or unreliable. The chances are that CFS/Lyme patients are

infected by one OR MORE bugs -- that they couldn't identify accurately even

if they wanted to, let alone do sensitivity tests for. Almost by

definition we are infected by a mysterious bug, otherwise it would not have

eluded us and our doctors and treatment for all the time we have been

sick. (I subscribe to the infection theory for most of us, if not all).

Don't believe me? Just look at good old helicobacter pylori - one of the

most common and damaging bugs imaginable. Not recognised at all until the

1980's yet having caused HUGE amounts of disease and distress. Still hard

to get sensitivity tests for, because it lives in your stomach and you need

a gastroscopy to get to it, and the bugs are a bit hard to grow

outside. We only know about it at all because of the massive local damage

it can do - as peptic ulcers. But it also causes a lot of systemic damage

and interferes with the immune system -- if it only did this and not also

the local, easily identified ulcers, we would still not know about this

particular bactaeria. How many other bugs are there hiding in other harder

to reach places that don't cause nice ulcers but devastate the immune

system? How would we possibly know about them if they live quietly in the

knees or big toe or brain or in one type of our immune cells -- and cause

no obvious damage there? Think about the difficulty researchers have had

in identifying borrelia (Lyme) or amny other Lyme-like coinfections, or

mycoplasmas or various strange viruses --- and the fact that there are

still no good tests for any of these, despite the claims.

It's a risk either way. If you wait until all your bugs are identifiable,

you may be waiting till after your death -- after years of an unpleasant,

unsatisfying unhealthy life. If you start treating on supposition, you

definitely might breed resistance, or cause sequesterisation (i.e. bugs

hiding in more and more difficult to reach places) or transition to another

more durable form (like spirochetal cysts) until the abx is gone.

You win some, you lose some. We sufferers of " chronic disease of the

mysterious types " just lose more than most. We have to be more aggressive

in our thinking therefore, perhaps.

n

[Guest guest]

n, I disagree. You can culture many bugs that aren't currently

being cultured (see Shoemaker's latest work re: coagulase negative

staph as well as the Australian research on the same subject) and

even if you don't identify the specific strain, you can still see if

it's toxic and do sensitivities. This is easy if the culture is

handled properly (meaning proper agar medium, etc.). Once you know

which antibiotics the pathogen are sensitive to, you've got a

fighting chance at beating it. This is far preferable to throwing

broad spectrum treatments at bugs, allowing them to get stronger,

which is the approach currently being used. We need to get this

horrible way of thinking reversed, and get back to some good basic

pathology. The kind the russians do on every patient before ever

prescribing an antibiotic. The people I know who are getting better,

actually, the ONLY people, are on long term antibiotics, which are

specifically targeting their pathogens, based on known sensitivies

which were found in the petri dish. We all need this same basic level

of care. Vets do it for birds and cats and dogs, but we, as humans

can't get it. Probably because simple cultures and sensitivities

don't haul in the big bucks, like expensive ct scans, and

colonoscopies, etc.

Sigh.

Check out Shoemaker's work at the stealth virus group (regarding

neurotoxins and coagulase negative staph). Then ask him or some other

intelligent doctor to order a nasal swab from Esoterix labs and see

what you find. If you start treating staph, any other bugs are

probably going to be handled along the way. Staph is one tough bug,

but we can beat it, as long as we fight smart.

penny

> > a point which I consider is most important about getting

> >abx to treat us. We must get the bacteria identified completely and

> >abx sensitivities done to see which abx will kill the bacteria.

>

> While I agree with the intention, my point is exactly the opposite -

there

> are a HUGE number of bugs that aren't even recognised yet, or that

tests

> are non-existent or unreliable. The chances are that CFS/Lyme

patients are

> infected by one OR MORE bugs -- that they couldn't identify

accurately even

> if they wanted to, let alone do sensitivity tests for. Almost by

> definition we are infected by a mysterious bug, otherwise it would

not have

> eluded us and our doctors and treatment for all the time we have

been

> sick. (I subscribe to the infection theory for most of us, if not

all).

>

> Don't believe me? Just look at good old helicobacter pylori - one

of the

> most common and damaging bugs imaginable. Not recognised at all

until the

> 1980's yet having caused HUGE amounts of disease and distress.

Still hard

> to get sensitivity tests for, because it lives in your stomach and

you need

> a gastroscopy to get to it, and the bugs are a bit hard to grow

> outside. We only know about it at all because of the massive local

damage

> it can do - as peptic ulcers. But it also causes a lot of systemic

damage

> and interferes with the immune system -- if it only did this and

not also

> the local, easily identified ulcers, we would still not know about

this

> particular bactaeria. How many other bugs are there hiding in

other harder

> to reach places that don't cause nice ulcers but devastate the

immune

> system? How would we possibly know about them if they live quietly

in the

> knees or big toe or brain or in one type of our immune cells -- and

cause

> no obvious damage there? Think about the difficulty researchers

have had

> in identifying borrelia (Lyme) or amny other Lyme-like

coinfections, or

> mycoplasmas or various strange viruses --- and the fact that there

are

> still no good tests for any of these, despite the claims.

>

> It's a risk either way. If you wait until all your bugs are

identifiable,

> you may be waiting till after your death -- after years of an

unpleasant,

> unsatisfying unhealthy life. If you start treating on

supposition, you

> definitely might breed resistance, or cause sequesterisation (i.e.

bugs

> hiding in more and more difficult to reach places) or transition to

another

> more durable form (like spirochetal cysts) until the abx is gone.

>

> You win some, you lose some. We sufferers of " chronic disease of

the

> mysterious types " just lose more than most. We have to be more

aggressive

> in our thinking therefore, perhaps.

>

> n

[Guest guest]

Another thing people don't understand about antibiotics is this: It's

not the bacteria that cause our symptoms, it's the toxins they

produce. And the toxins are antibacterial in themselves, meaning one

bacteria's toxins will overpower and suppress another bacteria. One

reason people feel sick on some antibiotics, is because if you don't

know which pathogens you're dealing with, you may weaken one just

enough to allow another one to kick up and produce new toxins which

are really going to make you feel lousy.

They haven't created over 100 different antibiotics because they were

bored. They created them to deal with different bacteria, and

different strains. We've got at least a 100 chances at beating these

things. It makes me really mad that doctors use guesswork, to try to

control the most adaptable life forms on the planet. Bacteria.

Gotta start getting smart with this stuff, as a very few people are

beginning to.

I'd suggest everyone look at this seriously. And consider how you

hear case after case after case where people like Dave and I have

felt better on several weeks of antibiotics. It should at least be

looked at seriously, don't you think?

has information about bacterial infections at the

mycoplasma group, and the stealth virus group. I suggest you check

this stuff out, and at least get a sense of the possibilities

regarding a bacterial cause of CFS.

penny

> >

> > Hello! I am trying once again to get some more clarity about the

> function

> > of antibiotics in relation to CFS. More than a year ago I was

giving

> a

> > long-term antibiotics treatment, over a few months, and in that

> period I

> > improved singificantly. I don't know if it was because of the

> antibiotics

> > or whether it was a correlation. But I do find it interesting,

> because I

> > think I have had a CFS relapse because of an infection.

> >

> > I have read some of Nicolson's comments on antibiotics.

Accordining

> to my

> > father seems to claim that everyone improves with antibiotics

> treatment.

> > Is this true, and can this really be the case. Nicolson also

> suggests that

> > one can get really ill in the beginning of the antibiotics

> treatment. One

> > thing that can happen is for instance headaches, due to

reparations

> in the

> > brain. I have tried antibiotics for about 4 weeks now recently,

and

> I felt

> > worse, then took a break and seemed to be getting better. But I

> don't

> > really feel well, and wonder if the antibiotics can do harm, or

> whether it

> > is just the initial reaction that Nicolson talks about. Any

> comments?

> >

> > I know that both Nicolson and Meirleir recommends long-term

> antibiotics

> > for many patients, but as has been discussed on the list this

> treatment is

> > not without side-effects, so it would be good to see if anyone

had

> any

> > opinions.

> >

> > Best wishes,

> > s

[Guest guest]

Well we need to agree to differ! I agree - again - with the intent, but

how many people have successfully isolated and cultured borrelia

burgdorferi from a patient? Or how many mycoplasmas are recoverable and

culturable? Or chlamydias lurking, for example, in the heart? Or

rickettsias in chronic cases? It just aint that easy. You can't even FIND

most of the bugs I am alarmed about - the best you ever get are PCR

detectable fragments, or antibodies. But they are there, and causing

pathology. And what about many of the viruses, especially the

intracellular ones?

Staph is a doddle compared to " stealthy " bugs. It - even Shoemaker's bug -

is located conveniently for swabbing, there's lots of it, it is

identifiable and it is growable easily enough if you put your mind to it.

But true there are many culturable bugs, so of course it would be better to

culture and sensitivity test these before treatment. But there are also

those that we can't find and/or don't know how to culture reliably

yet. Lots of them, and these are generally the ones we are concerned

about, as I said last post, because IF they were findable and cuturable

then they are not usually still a mystery and causing

undiscovered/unresolvable disease.

I also agree that for many better understood and more accessible bugs,

doctors are guilty in not culturing as the normal process, but they are

also constrained by their own ideas about best practice and

cost/benefits. In many cases it is more cost effective to treat

" blindly " . Trouble is they extend this mentality into genuinely

difficult areas where sensitivity tests would be very useful, without

differentiation, IMO.

n

At 18:08 06/01/03, you wrote:

>n, I disagree. You can culture many bugs that aren't currently

>being cultured (see Shoemaker's latest work re: coagulase negative

>staph as well as the Australian research on the same subject) and

>even if you don't identify the specific strain, you can still see if

>it's toxic and do sensitivities. This is easy if the culture is

>handled properly (meaning proper agar medium, etc.). Once you know

>which antibiotics the pathogen are sensitive to, you've got a

>fighting chance at beating it. This is far preferable to throwing

>broad spectrum treatments at bugs, allowing them to get stronger,

>which is the approach currently being used. We need to get this

>horrible way of thinking reversed, and get back to some good basic

>pathology. The kind the russians do on every patient before ever

>prescribing an antibiotic. The people I know who are getting better,

>actually, the ONLY people, are on long term antibiotics, which are

>specifically targeting their pathogens, based on known sensitivies

>which were found in the petri dish. We all need this same basic level

>of care. Vets do it for birds and cats and dogs, but we, as humans

>can't get it. Probably because simple cultures and sensitivities

>don't haul in the big bucks, like expensive ct scans, and

>colonoscopies, etc.

>

>Sigh.

>

>Check out Shoemaker's work at the stealth virus group (regarding

>neurotoxins and coagulase negative staph). Then ask him or some other

>intelligent doctor to order a nasal swab from Esoterix labs and see

>what you find. If you start treating staph, any other bugs are

>probably going to be handled along the way. Staph is one tough bug,

>but we can beat it, as long as we fight smart.

>

>penny

>

>

>

> > > a point which I consider is most important about getting

> > >abx to treat us. We must get the bacteria identified completely and

> > >abx sensitivities done to see which abx will kill the bacteria.

> >

> > While I agree with the intention, my point is exactly the opposite -

> there

> > are a HUGE number of bugs that aren't even recognised yet, or that

>tests

> > are non-existent or unreliable. The chances are that CFS/Lyme

>patients are

> > infected by one OR MORE bugs -- that they couldn't identify

>accurately even

> > if they wanted to, let alone do sensitivity tests for. Almost by

> > definition we are infected by a mysterious bug, otherwise it would

>not have

> > eluded us and our doctors and treatment for all the time we have

>been

> > sick. (I subscribe to the infection theory for most of us, if not

>all).

> >

> > Don't believe me? Just look at good old helicobacter pylori - one

>of the

> > most common and damaging bugs imaginable. Not recognised at all

>until the

> > 1980's yet having caused HUGE amounts of disease and distress.

>Still hard

> > to get sensitivity tests for, because it lives in your stomach and

>you need

> > a gastroscopy to get to it, and the bugs are a bit hard to grow

> > outside. We only know about it at all because of the massive local

>damage

> > it can do - as peptic ulcers. But it also causes a lot of systemic

>damage

> > and interferes with the immune system -- if it only did this and

>not also

> > the local, easily identified ulcers, we would still not know about

>this

> > particular bactaeria. How many other bugs are there hiding in

>other harder

> > to reach places that don't cause nice ulcers but devastate the

>immune

> > system? How would we possibly know about them if they live quietly

>in the

> > knees or big toe or brain or in one type of our immune cells -- and

>cause

> > no obvious damage there? Think about the difficulty researchers

>have had

> > in identifying borrelia (Lyme) or amny other Lyme-like

>coinfections, or

> > mycoplasmas or various strange viruses --- and the fact that there

>are

> > still no good tests for any of these, despite the claims.

> >

> > It's a risk either way. If you wait until all your bugs are

>identifiable,

> > you may be waiting till after your death -- after years of an

>unpleasant,

> > unsatisfying unhealthy life. If you start treating on

>supposition, you

> > definitely might breed resistance, or cause sequesterisation (i.e.

>bugs

> > hiding in more and more difficult to reach places) or transition to

>another

> > more durable form (like spirochetal cysts) until the abx is gone.

> >

> > You win some, you lose some. We sufferers of " chronic disease of

>the

> > mysterious types " just lose more than most. We have to be more

>aggressive

> > in our thinking therefore, perhaps.

> >

> > n

>

>

>This list is intended for patients to share personal experiences with each

>other, not to give medical advice. If you are interested in any treatment

>discussed here, please consult your doctor.

>

>

[Guest guest]

Hi n

I think that the points that have been reaised by yourself and Penny

are valid in their own scenarios. If you want to treat by using broad

spectrum abx to kill unknown bugs as well, then your scenario is the

valid one. If you suspect a specific group of bugs, as Penny does,

then a more concise way of diagnosis and treatment is the way to go.

I myself have gone thru the process of trying to eliminate other

problems from the overall picture of my health. I have tested negative

for mycoplasma DNA, BB DNA, HCV DNA, EBV DNA, CMV DNA, HHV6 DNA. I had

a remission from an abx which is sensitive to staph infections. I have

shown something anomalous floating around in my blood. Low-doses of

cholestryamine has helped, but not high dose. Gram stain has come back

negative, but standard 7-day culturing as per Tarello has come back

positive (still waiting for final analysis on this). Hence I am

looking towards a possible l-form staph infection. L-forms by their

definition will be slow growing because of their lack of an outer cell

wall to draw in nutrition. As you correctly point out the discovery of

h-pylori by long culturing shows a positive result; the same analogy

can be drawn between gram stains which are grown in a growth medium

for 2 days then cultured for 3 days which came out negative for me, as

opposed to culturing directly for 7 days which was positive.

Thanks for your input on the whole idea of abx and cfs.

Dave

> > a point which I consider is most important about getting

> >abx to treat us. We must get the bacteria identified completely and

> >abx sensitivities done to see which abx will kill the bacteria.

>

> While I agree with the intention, my point is exactly the opposite -

there

> are a HUGE number of bugs that aren't even recognised yet, or that

tests

> are non-existent or unreliable. The chances are that CFS/Lyme

patients are

> infected by one OR MORE bugs -- that they couldn't identify

accurately even

> if they wanted to, let alone do sensitivity tests for. Almost by

> definition we are infected by a mysterious bug, otherwise it would

not have

> eluded us and our doctors and treatment for all the time we have

been

> sick. (I subscribe to the infection theory for most of us, if not

all).

>

> Don't believe me? Just look at good old helicobacter pylori - one

of the

> most common and damaging bugs imaginable. Not recognised at all

until the

> 1980's yet having caused HUGE amounts of disease and distress.

Still hard

> to get sensitivity tests for, because it lives in your stomach and

you need

> a gastroscopy to get to it, and the bugs are a bit hard to grow

> outside. We only know about it at all because of the massive local

damage

> it can do - as peptic ulcers. But it also causes a lot of systemic

damage

> and interferes with the immune system -- if it only did this and not

also

> the local, easily identified ulcers, we would still not know about

this

> particular bactaeria. How many other bugs are there hiding in other

harder

> to reach places that don't cause nice ulcers but devastate the

immune

> system? How would we possibly know about them if they live quietly

in the

> knees or big toe or brain or in one type of our immune cells -- and

cause

> no obvious damage there? Think about the difficulty researchers

have had

> in identifying borrelia (Lyme) or amny other Lyme-like coinfections,

or

> mycoplasmas or various strange viruses --- and the fact that there

are

> still no good tests for any of these, despite the claims.

>

> It's a risk either way. If you wait until all your bugs are

identifiable,

> you may be waiting till after your death -- after years of an

unpleasant,

> unsatisfying unhealthy life. If you start treating on supposition,

you

> definitely might breed resistance, or cause sequesterisation (i.e.

bugs

> hiding in more and more difficult to reach places) or transition to

another

> more durable form (like spirochetal cysts) until the abx is gone.

>

> You win some, you lose some. We sufferers of " chronic disease of

the

> mysterious types " just lose more than most. We have to be more

aggressive

> in our thinking therefore, perhaps.

>

> n

[Guest guest]

Dave wrote:

I have tested negative

> for mycoplasma DNA, BB DNA, HCV DNA, EBV DNA, CMV DNA, HHV6 DNA. I had

> a remission from an abx which is sensitive to staph infections.

Dave, the PCRs being used these days for mycoplasmas are probably not too

accurate. The two west coast labs seem to be using a test where one blood

sample is used to add primers for more than one mycoplasma. (I don't know

what the New Jersey lab is doing.) It is not clear whether this is as

accurate as one blood sample plus ONE primer for ONE mycoplasma strain at a

time. As to the tick borne pathogens, where were you tested? My best guess

is that Igenex is the best lab.

a Carnes