Re: Mircroscopy and other tests for borrelia, babesia etc

[Guest guest]

> ,

> I have discussed the other tests with the ILADS MDs. Fry Lab in

> sdale was recommended to me by an expert MD whose name I will

> not mention. In my experience IgeneX remains top on the list for tick

> borne testing. But, as I am sure you know, certainly not my opinion

> nor that of the ILADS doctors, means the medical establishment takes

> any of this seriously.

Well, my vague understanding is that Igenex is willing to interpret

rather lighter bands than other labs are, or else make what they are

doing more sensitive in some way. They state that they do negative

control Western blots with healthy blood, and those are totally blank,

or at least distinguishable from the ones they class as positive. But

if they don't publish (even self-publish) what they are doing and what

the sample results look like, what do I know about what they are doing?

And how do I know they aren't picking up some nonspecific antibodies

on their blots, which are present in CFS patients, but not in

healthies, because of CFSers' general immunoactivation status? I would

like to see them take 5 or 7 other microbes and compare the CFS blots

to control blots. How do I know I don't have light Western blot bands

right now for everything I've ever been exposed to, because my

inflammatory status gets my old dormant memory B cells excited enough

to produce a little antibody?

> Just an example - I have basically the same symptoms - vestibular

> neuronitis as President Bush's diagnosis. The docs know we both

> have/had a borrelia infection. We both had a bull's eye rash. Does

> anyone therefore assume the vestibular inflammation is CAUSED by

> borrelia? OF COURSE NOT. Hello!

Well, that's very plausible, but it takes a statistical association

over many, many cases to make hay. At least some people claim that

that association isn't there. That doesn't mean they are necessarily

right.

[Guest guest]

ERic,

Let me backtrack and keep things simple. I'm not trying to diagnose

myself by comparing myself to Bush. My case is simple. I have a

positive western blot from IgeneX. My husband and son do also. We all

have a positive urine antigen with a reverse western blot on that. We

have borrelia period, case closed. Next question, do I have babesia?

Next, question, is my current headache of 14 months caused by

borrelia, babesia, something else? So now I am thinking I should get

the babesia microscopy test done at Fry Lab, not IgeneX. No lyme doc

thought I should waste my time getting a babesia test done at IgeneX

since there is only one babesia test and there are at least 17

strains. The reason they think I have babesia is because I do so well

on Zithromax. But at this point I don't do well on Zithromax, so I

think Fry sounds good, if expensive, and then maybe go back to either

Zithromax and Mepron or try the Marshall Protocol again IF it isn't

babesia. Now it's not so simple, is it? Too bad I am not Bush.

a

>

> > ,

> > I have discussed the other tests with the ILADS MDs. Fry Lab in

> > sdale was recommended to me by an expert MD whose name I

will

> > not mention. In my experience IgeneX remains top on the list for

tick

> > borne testing. But, as I am sure you know, certainly not my

opinion

> > nor that of the ILADS doctors, means the medical establishment

takes

> > any of this seriously.

>

> Well, my vague understanding is that Igenex is willing to interpret

> rather lighter bands than other labs are, or else make what they are

> doing more sensitive in some way. They state that they do negative

> control Western blots with healthy blood, and those are totally

blank,

> or at least distinguishable from the ones they class as positive.

But

> if they don't publish (even self-publish) what they are doing and

what

> the sample results look like, what do I know about what they are

doing?

>

> And how do I know they aren't picking up some nonspecific antibodies

> on their blots, which are present in CFS patients, but not in

> healthies, because of CFSers' general immunoactivation status? I

would

> like to see them take 5 or 7 other microbes and compare the CFS

blots

> to control blots. How do I know I don't have light Western blot

bands

> right now for everything I've ever been exposed to, because my

> inflammatory status gets my old dormant memory B cells excited

enough

> to produce a little antibody?

>

>

> > Just an example - I have basically the same symptoms - vestibular

> > neuronitis as President Bush's diagnosis. The docs know we both

> > have/had a borrelia infection. We both had a bull's eye rash.

Does

> > anyone therefore assume the vestibular inflammation is CAUSED by

> > borrelia? OF COURSE NOT. Hello!

>

> Well, that's very plausible, but it takes a statistical association

> over many, many cases to make hay. At least some people claim that

> that association isn't there. That doesn't mean they are necessarily

> right.

>

[Guest guest]

> Let me backtrack and keep things simple. I'm not trying to diagnose

> myself by comparing myself to Bush.

Well, I know. I just always think in terms of whether something can be

established as fact, or not. As in, with 90-99% confidence. But I

realize that when we make treatment decisions we often rely on

statements we accept with 60%, or even 25% confidence (often a complex

network of such statements).

> The reason they think I have babesia is because I do so well on

Zithromax.

How sound can that deduction be, considering borrelia is exquisitely

sensitive to zith?

> My case is simple. I have a positive western blot from IgeneX. My

husband and son do also. We all have a positive urine antigen with a

reverse western blot on that. We have borrelia period, case closed.

Well, that reverse WB is an interesting result. Borrelia *could*

infect benignly (not that that means you shouldn't try to kill it

anyway, in case it is harming you). Therefore it would be even more

interesting a result if the positive reverse WB correlated well with

CFS. Sounds like Igenex is trying to do just that:

" [Q.] Why don't we find Lyme antigen studies published in the

mainstream scientific journals?

" Lyme is a political " hot potato " and editors must unfortunately make

tough decisions that usually follow the academic mainstream. We have

tried unsuccessfully and will continue to submit studies. Currently we

have a seven-center study underway regarding Lyme symptoms and the

detection of antigen in urine. This study will be submitted for

publication. "

Well, their claim about the climate is not totally unbelievable,

considering that papers on lyme are likely to be sent to Steere, etc,

for review. But anything would be better than nothing. Some people

actually do assume that anything published in The Journal That No One

Reads must be crap, but lots of people don't. And there are journals

now like PLoS One that are not reviewed for anything other than

methodological logic. In fact I don't know if their review is even

sent to peers in the field or just done in house. At worst, you could

self-publish it on the internet, even though that makes you look a bit

roguish. At least people could read it, ja? Or start/run your own

journal like what's-his-name apparently does/did (or something like

that; I don't really know exactly how that worked).

Even once you show that positivity correlates with symptoms, how much

of a possibility cross-reactivity could be - ie other non-Bb antigens

that could get in there and give a false positive - I'm not really

certain. It depends a lot whether you use monocolonal or polyclonal

antibodies. If the same sample were positive using 4 or 5 different

monoclonals, I think that would give very high confidence that you

have the genuine Bb.

[Guest guest]

That's part of the whole testing mess. I think every lab might have

their own intensity criteria...

and in some labs- like MAYO the inensity measurement can be a hair

under meeting criteria and they call it a 'negative band'... where as

IGENEX has an equivocal intensity range.. THAT's the big difference..

Barb

>

> > ,

> > I have discussed the other tests with the ILADS MDs. Fry Lab in

> > sdale was recommended to me by an expert MD whose name I

will

> > not mention. In my experience IgeneX remains top on the list for

tick

> > borne testing. But, as I am sure you know, certainly not my

opinion

> > nor that of the ILADS doctors, means the medical establishment

takes

> > any of this seriously.

>

> Well, my vague understanding is that Igenex is willing to interpret

> rather lighter bands than other labs are, or else make what they are

> doing more sensitive in some way. They state that they do negative

> control Western blots with healthy blood, and those are totally

blank,

> or at least distinguishable from the ones they class as positive.

But

> if they don't publish (even self-publish) what they are doing and

what

> the sample results look like, what do I know about what they are

doing?

>

> And how do I know they aren't picking up some nonspecific antibodies

> on their blots, which are present in CFS patients, but not in

> healthies, because of CFSers' general immunoactivation status? I

would

> like to see them take 5 or 7 other microbes and compare the CFS

blots

> to control blots. How do I know I don't have light Western blot

bands

> right now for everything I've ever been exposed to, because my

> inflammatory status gets my old dormant memory B cells excited

enough

> to produce a little antibody?

>

>

> > Just an example - I have basically the same symptoms - vestibular

> > neuronitis as President Bush's diagnosis. The docs know we both

> > have/had a borrelia infection. We both had a bull's eye rash.

Does

> > anyone therefore assume the vestibular inflammation is CAUSED by

> > borrelia? OF COURSE NOT. Hello!

>

> Well, that's very plausible, but it takes a statistical association

> over many, many cases to make hay. At least some people claim that

> that association isn't there. That doesn't mean they are necessarily

> right.

>

[Guest guest]

,

I don't think Zithromax is considered the first choice to treat

borrelia. It plus Mepron is a top choice for babesia. We all in my

family had Lyme symptoms and all our symptoms cleared with antibiotic

treatment. My husband and I both do very well on Zithromax which

again makes sense assuming we would most likely be infected with the

same bacteria.

I have wondered for a few years now why IgeneX testing is not

respected by the mainstream. I came into the Lyme area only in the

past 4 years, so I don't know all the machinations that have gone on.

I do think once you get a few positive western blot bands and a

positive urine antigen that is also positive in a reverse western

blot you are at pretty high odds that you have borrelia. Furthermore,

all three of us in my family had repeated tick bites in the same back

yard. Our other son is probably also infected, but he has not been

sick yet and has not been interested to be tested. I respect that. I

also am concerned for him. The older brother did not show signs of

illness until he was about 30 years old.

I think you might find it interesting to call IgeneX and discuss your

questions with Dr. Shah (not sure exactly how to spell her name).

a

>

>

> > Let me backtrack and keep things simple. I'm not trying to

diagnose

> > myself by comparing myself to Bush.

>

> Well, I know. I just always think in terms of whether something can

be

> established as fact, or not. As in, with 90-99% confidence. But I

> realize that when we make treatment decisions we often rely on

> statements we accept with 60%, or even 25% confidence (often a

complex

> network of such statements).

>

>

> > The reason they think I have babesia is because I do so well on

> Zithromax.

>

> How sound can that deduction be, considering borrelia is exquisitely

> sensitive to zith?

>

>

> > My case is simple. I have a positive western blot from IgeneX. My

> husband and son do also. We all have a positive urine antigen with a

> reverse western blot on that. We have borrelia period, case closed.

>

> Well, that reverse WB is an interesting result. Borrelia *could*

> infect benignly (not that that means you shouldn't try to kill it

> anyway, in case it is harming you). Therefore it would be even more

> interesting a result if the positive reverse WB correlated well with

> CFS. Sounds like Igenex is trying to do just that:

>

> " [Q.] Why don't we find Lyme antigen studies published in the

> mainstream scientific journals?

>

> " Lyme is a political " hot potato " and editors must unfortunately

make

> tough decisions that usually follow the academic mainstream. We have

> tried unsuccessfully and will continue to submit studies. Currently

we

> have a seven-center study underway regarding Lyme symptoms and the

> detection of antigen in urine. This study will be submitted for

> publication. "

>

> Well, their claim about the climate is not totally unbelievable,

> considering that papers on lyme are likely to be sent to Steere,

etc,

> for review. But anything would be better than nothing. Some people

> actually do assume that anything published in The Journal That No

One

> Reads must be crap, but lots of people don't. And there are journals

> now like PLoS One that are not reviewed for anything other than

> methodological logic. In fact I don't know if their review is even

> sent to peers in the field or just done in house. At worst, you

could

> self-publish it on the internet, even though that makes you look a

bit

> roguish. At least people could read it, ja? Or start/run your own

> journal like what's-his-name apparently does/did (or something like

> that; I don't really know exactly how that worked).

>

> Even once you show that positivity correlates with symptoms, how

much

> of a possibility cross-reactivity could be - ie other non-Bb

antigens

> that could get in there and give a false positive - I'm not really

> certain. It depends a lot whether you use monocolonal or polyclonal

> antibodies. If the same sample were positive using 4 or 5 different

> monoclonals, I think that would give very high confidence that you

> have the genuine Bb.

>

[Guest guest]

a, I have a friend who spoke with the top guy at Igenex a few years back and he told her (at that time) that all of their tests come back positive. While that might make fans out of a lot of sick people, I think that's where the lack of respect in the medical community originated. It was right around then that Igenex started getting a whole lot of criticism for exactly that, no? And since then, haven't they reported more varied results? That shift is also going to make people doubt the results. I can say in their defense that I was one of their more recent testees and I basically tested negative, except for 2 equivocal bands. Some doctors would say that means I could still have lyme. I'm skeptical, especially considering I insisted on being tested 17 years ago when I was having symptoms that could be attributed to a tick

bite, and that test also came back negative. You know that if tested, something like 85% of the population would test positive for Herpes, right? And yet 85% of the people do not experience Herpes outbreaks. This could be happening with Lyme testing as well. It's the same argument used against Staph and other organisms. That almost everyone carries them, but not everybody's sick from them. While Herpes gets credit for making some people chronically symptomatic, staph gets no credit whatsoever. (exceptions being osteomyelitis where it rots your bones, or sepsis, where it kills you, or chronic skin infections. Other than those, staph is a "benign" organism. lol!). The big difference for me between lyme type organisms and staph type organisms is that you can easily get a sample of your

staph organisms, culture them and then do a therapeutic probe with the drugs they're sensitive to. If you feel a whole lot better with treatment, then that's a pretty good indication that a staph infection is making you sick. Most likely it's staph, or possibly some other organism that's also sensitive to the same drugs. Whereas with Lyme, if you do or don't respond to an abx, there's no sure way to know if it's a real lyme bug you're dealing with or some other bug you're completely clueless about. When bugs are identified correctly and cultured however, you've got a much better chance of treating precisely and successfully. Tony was extremely ill. He treated aggressively based on what he saw working against the staph in his petri dish. As a result of his testing and treatment, staph no longer grows profusely in his petri dish. He's no longer

symptomatic either. That's a pretty cut-and-dried illustration of cause and effect, or in his case, cause and cure. But that result, and others like it, are still not good enough for the medical community. So it's no wonder Igenex testing for Lyme isn't good enough either. penny pjeanneus <pj7@...> wrote: ,I don't think Zithromax is

considered the first choice to treat borrelia. It plus Mepron is a top choice for babesia. We all in my family had Lyme symptoms and all our symptoms cleared with antibiotic treatment. My husband and I both do very well on Zithromax which again makes sense assuming we would most likely be infected with the same bacteria.I have wondered for a few years now why IgeneX testing is not respected by the mainstream. I came into the Lyme area only in the past 4 years, so I don't know all the machinations that have gone on. I do think once you get a few positive western blot bands and a positive urine antigen that is also positive in a reverse western blot you are at pretty high odds that you have borrelia. Furthermore, all three of us in my family had repeated tick bites in the same back yard. Our other son is probably also infected, but he has not been sick yet and has not been interested to be tested. I respect that. I

also am concerned for him. The older brother did not show signs of illness until he was about 30 years old.I think you might find it interesting to call IgeneX and discuss your questions with Dr. Shah (not sure exactly how to spell her name). a>> > > Let me backtrack and keep things simple. I'm not trying to diagnose > > myself by comparing myself to Bush. > > Well, I know. I just always think in terms of whether something can be> established as fact, or not. As in, with 90-99% confidence. But I> realize that when we make treatment decisions we often rely on> statements we accept with 60%, or even 25% confidence (often a complex> network of such statements).> > > > The reason they think I have babesia is because I do so well on> Zithromax. > > How sound can that deduction be, considering borrelia is

exquisitely> sensitive to zith? > > > > My case is simple. I have a positive western blot from IgeneX. My> husband and son do also. We all have a positive urine antigen with a> reverse western blot on that. We have borrelia period, case closed. > > Well, that reverse WB is an interesting result. Borrelia *could*> infect benignly (not that that means you shouldn't try to kill it> anyway, in case it is harming you). Therefore it would be even more> interesting a result if the positive reverse WB correlated well with> CFS. Sounds like Igenex is trying to do just that:> > "[Q.] Why don't we find Lyme antigen studies published in the> mainstream scientific journals?> > "Lyme is a political "hot potato" and editors must unfortunately make> tough decisions that usually follow the academic mainstream. We have> tried unsuccessfully and will

continue to submit studies. Currently we> have a seven-center study underway regarding Lyme symptoms and the> detection of antigen in urine. This study will be submitted for> publication."> > Well, their claim about the climate is not totally unbelievable,> considering that papers on lyme are likely to be sent to Steere, etc,> for review. But anything would be better than nothing. Some people> actually do assume that anything published in The Journal That No One> Reads must be crap, but lots of people don't. And there are journals> now like PLoS One that are not reviewed for anything other than> methodological logic. In fact I don't know if their review is even> sent to peers in the field or just done in house. At worst, you could> self-publish it on the internet, even though that makes you look a bit> roguish. At least people could read it, ja? Or

start/run your own> journal like what's-his-name apparently does/did (or something like> that; I don't really know exactly how that worked).> > Even once you show that positivity correlates with symptoms, how much> of a possibility cross-reactivity could be - ie other non-Bb antigens> that could get in there and give a false positive - I'm not really> certain. It depends a lot whether you use monocolonal or polyclonal> antibodies. If the same sample were positive using 4 or 5 different> monoclonals, I think that would give very high confidence that you> have the genuine Bb.>

[Guest guest]

Penny, you and I are not disagreeing. I was describing the three

specific cases in my family. All of us were given three tests at

Igenex, not just western blots. We all have several positive bands

and we all have positive urine antigen. Not all cases are so

obviously borrelia. But then considering we all had lots of tick

bites in the same neighborhood you would expect we would all be

infecfed if one of us was. We also all respond to treatment even

though our sypmtoms are not the same - again what one would expect

with neuro infection from a spirochete.

The other side of this whole question of how much cfs/fms is actually

Lyme is the reality that Lyme patients who are clearly infected with

borrelia also tend to be infected with babesia, ehrlichia,

mycoplasmas, viruses, bartonella and MRSA - not to mention genetic

inability to handle toxic mold.

My personal concern and major decision at this point is whether to

shell out the money to get tested for babesia at this Fry Lab. I

think I will do it. Of course, I will share here whatever I learn.

a

>

> a,

>

> I have a friend who spoke with the top guy at Igenex a few years

back and he told her (at that time) that all of their tests come back

positive. While that might make fans out of a lot of sick people, I

think that's where the lack of respect in the medical community

originated.

>

> It was right around then that Igenex started getting a whole lot

of criticism for exactly that, no? And since then, haven't they

reported more varied results? That shift is also going to make people

doubt the results.

>

> I can say in their defense that I was one of their more recent

testees and I basically tested negative, except for 2 equivocal

bands. Some doctors would say that means I could still have lyme. I'm

skeptical, especially considering I insisted on being tested 17 years

ago when I was having symptoms that could be attributed to a tick

bite, and that test also came back negative.

>

> You know that if tested, something like 85% of the population

would test positive for Herpes, right? And yet 85% of the people do

not experience Herpes outbreaks. This could be happening with Lyme

testing as well.

>

> It's the same argument used against Staph and other organisms.

That almost everyone carries them, but not everybody's sick from

them. While Herpes gets credit for making some people chronically

symptomatic, staph gets no credit whatsoever. (exceptions being

osteomyelitis where it rots your bones, or sepsis, where it kills

you, or chronic skin infections. Other than those, staph is

a " benign " organism. lol!).

>

> The big difference for me between lyme type organisms and staph

type organisms is that you can easily get a sample of your staph

organisms, culture them and then do a therapeutic probe with the

drugs they're sensitive to. If you feel a whole lot better with

treatment, then that's a pretty good indication that a staph

infection is making you sick. Most likely it's staph, or possibly

some other organism that's also sensitive to the same drugs. Whereas

with Lyme, if you do or don't respond to an abx, there's no sure way

to know if it's a real lyme bug you're dealing with or some other bug

you're completely clueless about. When bugs are identified correctly

and cultured however, you've got a much better chance of treating

precisely and successfully.

>

> Tony was extremely ill. He treated aggressively based on what he

saw working against the staph in his petri dish. As a result of his

testing and treatment, staph no longer grows profusely in his petri

dish. He's no longer symptomatic either. That's a pretty cut-and-

dried illustration of cause and effect, or in his case, cause and

cure.

>

> But that result, and others like it, are still not good enough

for the medical community. So it's no wonder Igenex testing for Lyme

isn't good enough either.

>

> penny

>

>

>

>

>

>

> pjeanneus <pj7@...> wrote:

> ,

> I don't think Zithromax is considered the first choice to treat

> borrelia. It plus Mepron is a top choice for babesia. We all in my

> family had Lyme symptoms and all our symptoms cleared with

antibiotic

> treatment. My husband and I both do very well on Zithromax which

> again makes sense assuming we would most likely be infected with

the

> same bacteria.

>

> I have wondered for a few years now why IgeneX testing is not

> respected by the mainstream. I came into the Lyme area only in the

> past 4 years, so I don't know all the machinations that have gone

on.

> I do think once you get a few positive western blot bands and a

> positive urine antigen that is also positive in a reverse western

> blot you are at pretty high odds that you have borrelia.

Furthermore,

> all three of us in my family had repeated tick bites in the same

back

> yard. Our other son is probably also infected, but he has not been

> sick yet and has not been interested to be tested. I respect that.

I

> also am concerned for him. The older brother did not show signs of

> illness until he was about 30 years old.

>

> I think you might find it interesting to call IgeneX and discuss

your

> questions with Dr. Shah (not sure exactly how to spell her name).

>

> a

>

> >

> >

> > > Let me backtrack and keep things simple. I'm not trying to

> diagnose

> > > myself by comparing myself to Bush.

> >

> > Well, I know. I just always think in terms of whether something

can

> be

> > established as fact, or not. As in, with 90-99% confidence. But I

> > realize that when we make treatment decisions we often rely on

> > statements we accept with 60%, or even 25% confidence (often a

> complex

> > network of such statements).

> >

> >

> > > The reason they think I have babesia is because I do so well on

> > Zithromax.

> >

> > How sound can that deduction be, considering borrelia is

exquisitely

> > sensitive to zith?

> >

> >

> > > My case is simple. I have a positive western blot from IgeneX.

My

> > husband and son do also. We all have a positive urine antigen

with a

> > reverse western blot on that. We have borrelia period, case

closed.

> >

> > Well, that reverse WB is an interesting result. Borrelia *could*

> > infect benignly (not that that means you shouldn't try to kill it

> > anyway, in case it is harming you). Therefore it would be even

more

> > interesting a result if the positive reverse WB correlated well

with

> > CFS. Sounds like Igenex is trying to do just that:

> >

> > " [Q.] Why don't we find Lyme antigen studies published in the

> > mainstream scientific journals?

> >

> > " Lyme is a political " hot potato " and editors must unfortunately

> make

> > tough decisions that usually follow the academic mainstream. We

have

> > tried unsuccessfully and will continue to submit studies.

Currently

> we

> > have a seven-center study underway regarding Lyme symptoms and the

> > detection of antigen in urine. This study will be submitted for

> > publication. "

> >

> > Well, their claim about the climate is not totally unbelievable,

> > considering that papers on lyme are likely to be sent to Steere,

> etc,

> > for review. But anything would be better than nothing. Some people

> > actually do assume that anything published in The Journal That No

> One

> > Reads must be crap, but lots of people don't. And there are

journals

> > now like PLoS One that are not reviewed for anything other than

> > methodological logic. In fact I don't know if their review is even

> > sent to peers in the field or just done in house. At worst, you

> could

> > self-publish it on the internet, even though that makes you look

a

> bit

> > roguish. At least people could read it, ja? Or start/run your own

> > journal like what's-his-name apparently does/did (or something

like

> > that; I don't really know exactly how that worked).

> >

> > Even once you show that positivity correlates with symptoms, how

> much

> > of a possibility cross-reactivity could be - ie other non-Bb

> antigens

> > that could get in there and give a false positive - I'm not really

> > certain. It depends a lot whether you use monocolonal or

polyclonal

> > antibodies. If the same sample were positive using 4 or 5

different

> > monoclonals, I think that would give very high confidence that you

> > have the genuine Bb.

> >

>

[Guest guest]

> That's part of the whole testing mess. I think every lab might have

> their own intensity criteria...

>

> and in some labs- like MAYO the inensity measurement can be a hair

> under meeting criteria and they call it a 'negative band'... where as

> IGENEX has an equivocal intensity range.. THAT's the big difference..

Right, exactly. It's different from what everyone else is doing, so it

raises certain questions, such as, might this sort of faint reactivity

be present in inflammatory patients against many different pathogens.

[Guest guest]

But my point is, and I think 's as well, is that just because you have a positive test doesn't necessarily mean it's what's making you sick. This is why the medical community isn't quick to jump on the band wagon (no pun intended). I don't want to discount any test results, because it could be a major clue, or the actual cause of illness, but I think it's good to always keep in the back of your mind that it could also be a red herring. penny pjeanneus <pj7@...> wrote: Penny, you and I are not disagreeing. I was describing the three specific cases in my family. All of us were given three tests at Igenex, not just western blots. We all have several positive bands and we all have positive urine antigen. Not all cases are so obviously borrelia. But then considering we all had lots of tick bites in the same neighborhood you would expect we would all be infecfed if one of us was. We also all respond to treatment even though our sypmtoms are not the same - again what one would expect with neuro infection from a spirochete. The other side of this whole question of how much cfs/fms is actually Lyme is the reality that Lyme patients who are clearly infected with borrelia also tend to be infected with babesia, ehrlichia, mycoplasmas, viruses, bartonella and MRSA - not to mention genetic inability

to handle toxic mold.My personal concern and major decision at this point is whether to shell out the money to get tested for babesia at this Fry Lab. I think I will do it. Of course, I will share here whatever I learn.a>> a, > > I have a friend who spoke with the top guy at Igenex a few years back and he told her (at that time) that all of their tests come back positive. While that might make fans out of a lot of sick people, I think that's where the lack of respect in the medical community originated. > > It was right around then that Igenex started getting a whole lot of criticism for exactly that, no? And since then, haven't they reported more varied results? That shift is also going to make people doubt the results. > > I can say in their defense that I was one of their more recent testees and I basically tested negative, except for 2 equivocal

bands. Some doctors would say that means I could still have lyme. I'm skeptical, especially considering I insisted on being tested 17 years ago when I was having symptoms that could be attributed to a tick bite, and that test also came back negative.> > You know that if tested, something like 85% of the population would test positive for Herpes, right? And yet 85% of the people do not experience Herpes outbreaks. This could be happening with Lyme testing as well. > > It's the same argument used against Staph and other organisms. That almost everyone carries them, but not everybody's sick from them. While Herpes gets credit for making some people chronically symptomatic, staph gets no credit whatsoever. (exceptions being osteomyelitis where it rots your bones, or sepsis, where it kills you, or chronic skin infections. Other than those, staph is a "benign" organism. lol!).> > The

big difference for me between lyme type organisms and staph type organisms is that you can easily get a sample of your staph organisms, culture them and then do a therapeutic probe with the drugs they're sensitive to. If you feel a whole lot better with treatment, then that's a pretty good indication that a staph infection is making you sick. Most likely it's staph, or possibly some other organism that's also sensitive to the same drugs. Whereas with Lyme, if you do or don't respond to an abx, there's no sure way to know if it's a real lyme bug you're dealing with or some other bug you're completely clueless about. When bugs are identified correctly and cultured however, you've got a much better chance of treating precisely and successfully.> > Tony was extremely ill. He treated aggressively based on what he saw working against the staph in his petri dish. As a result of his testing and treatment, staph no

longer grows profusely in his petri dish. He's no longer symptomatic either. That's a pretty cut-and-dried illustration of cause and effect, or in his case, cause and cure. > > But that result, and others like it, are still not good enough for the medical community. So it's no wonder Igenex testing for Lyme isn't good enough either.> > penny> > > > > > > pjeanneus <pj7@...> wrote:> ,> I don't think Zithromax is considered the first choice to treat > borrelia. It plus Mepron is a top choice for babesia. We all in my > family had Lyme symptoms and all our symptoms cleared with antibiotic > treatment. My husband and I both do very well on Zithromax which > again makes sense assuming we would most likely be infected with the > same bacteria.> > I have wondered for a few years now why IgeneX testing is

not > respected by the mainstream. I came into the Lyme area only in the > past 4 years, so I don't know all the machinations that have gone on. > I do think once you get a few positive western blot bands and a > positive urine antigen that is also positive in a reverse western > blot you are at pretty high odds that you have borrelia. Furthermore, > all three of us in my family had repeated tick bites in the same back > yard. Our other son is probably also infected, but he has not been > sick yet and has not been interested to be tested. I respect that. I > also am concerned for him. The older brother did not show signs of > illness until he was about 30 years old.> > I think you might find it interesting to call IgeneX and discuss your > questions with Dr. Shah (not sure exactly how to spell her name). > > a> > >> >

> > > Let me backtrack and keep things simple. I'm not trying to > diagnose > > > myself by comparing myself to Bush. > > > > Well, I know. I just always think in terms of whether something can > be> > established as fact, or not. As in, with 90-99% confidence. But I> > realize that when we make treatment decisions we often rely on> > statements we accept with 60%, or even 25% confidence (often a > complex> > network of such statements).> > > > > > > The reason they think I have babesia is because I do so well on> > Zithromax. > > > > How sound can that deduction be, considering borrelia is exquisitely> > sensitive to zith? > > > > > > > My case is simple. I have a positive western blot from IgeneX. My> > husband and son do also. We all have

a positive urine antigen with a> > reverse western blot on that. We have borrelia period, case closed. > > > > Well, that reverse WB is an interesting result. Borrelia *could*> > infect benignly (not that that means you shouldn't try to kill it> > anyway, in case it is harming you). Therefore it would be even more> > interesting a result if the positive reverse WB correlated well with> > CFS. Sounds like Igenex is trying to do just that:> > > > "[Q.] Why don't we find Lyme antigen studies published in the> > mainstream scientific journals?> > > > "Lyme is a political "hot potato" and editors must unfortunately > make> > tough decisions that usually follow the academic mainstream. We have> > tried unsuccessfully and will continue to submit studies. Currently > we> > have a seven-center

study underway regarding Lyme symptoms and the> > detection of antigen in urine. This study will be submitted for> > publication."> > > > Well, their claim about the climate is not totally unbelievable,> > considering that papers on lyme are likely to be sent to Steere, > etc,> > for review. But anything would be better than nothing. Some people> > actually do assume that anything published in The Journal That No > One> > Reads must be crap, but lots of people don't. And there are journals> > now like PLoS One that are not reviewed for anything other than> > methodological logic. In fact I don't know if their review is even> > sent to peers in the field or just done in house. At worst, you > could> > self-publish it on the internet, even though that makes you look a > bit> > roguish. At least people could

read it, ja? Or start/run your own> > journal like what's-his-name apparently does/did (or something like> > that; I don't really know exactly how that worked).> > > > Even once you show that positivity correlates with symptoms, how > much> > of a possibility cross-reactivity could be - ie other non-Bb > antigens> > that could get in there and give a false positive - I'm not really> > certain. It depends a lot whether you use monocolonal or polyclonal> > antibodies. If the same sample were positive using 4 or 5 different> > monoclonals, I think that would give very high confidence that you> > have the genuine Bb.> >>

[Guest guest]

OK- No- You're not understanding the point I was trying to make.

In all tests- there are raw data that is interpreted to 'some'

criteria to be deemed either positive or negative- either in or out

of range.

Igenex reports the 'raw' data to the physician - THAT's the

difference. Mayo tests show the bands that are 'faint'i.e that don't

reach their intensity criteria - but they won't tell you what they

are..

That's why Igenex is open to so much critism -

What your talking about is called specificity - how specific to the

particular pathogen is the test- can there be cross reactivity??

Then there's sensitivity- how sensitive is the test? If a test has

low sensitivity but very high specificity and you test positive -

then you probably have what they say you have... (you always have a

much greater change to test false negative with this type)

If a test is extremely sensitive but not very specific- then who

knows what you have even if you test positive..(False positives is

common here).

Tehn throw in the 'criteria' - like you have to have 5 out of 10

bands positive- and you get the picture..

In a disease like Malaria- they STILL look at viable organisms in

blood.. they don't even have a Western Blot for Malaria- nor do they

count any anybody titers- they go by organisms present and symptoms.

Testing just sucks for Lyme. And I know from experience- You can have

Lyme and have it mis-dxed as various things... then be treated

totally wrong & probably make things much worse and muddy the

diagnostic waters even more.

Barb

PS- I'll interpret the raw data thankyouverymuch myself... if I could

get StoneyBrook to release their raw data I'da hate my test done

there... but no one wants to release raw data becuase it's opne to

interpretation! Now we're going around the Rosie!!

>

>

>

>

>

> > That's part of the whole testing mess. I think every lab might

have

> > their own intensity criteria...

> >

> > and in some labs- like MAYO the inensity measurement can be a

hair

> > under meeting criteria and they call it a 'negative band'...

where as

> > IGENEX has an equivocal intensity range.. THAT's the big

difference..

>

>

> Right, exactly. It's different from what everyone else is doing, so

it

> raises certain questions, such as, might this sort of faint

reactivity

> be present in inflammatory patients against many different

pathogens.

>

[Guest guest]

Ah- but what's the quality of the testing - see my other note on

sensitivity & specificity...

WHen you talk about culturing a bacteris & running an abx sensitivity

test on the organism- I agree 100% - you've ID the bad guy and found

the right weapon...

With some occult bugs you just can't do that - if they aren't in the

blood or mucous- what do you do? Guess. That's what they all do (

Drs. that is).

Barb

> > ,

> > I don't think Zithromax is considered the first choice to treat

> > borrelia. It plus Mepron is a top choice for babesia. We all in

my

> > family had Lyme symptoms and all our symptoms cleared with

> antibiotic

> > treatment. My husband and I both do very well on Zithromax which

> > again makes sense assuming we would most likely be infected with

> the

> > same bacteria.

> >

> > I have wondered for a few years now why IgeneX testing is not

> > respected by the mainstream. I came into the Lyme area only in

the

> > past 4 years, so I don't know all the machinations that have gone

> on.

> > I do think once you get a few positive western blot bands and a

> > positive urine antigen that is also positive in a reverse western

> > blot you are at pretty high odds that you have borrelia.

> Furthermore,

> > all three of us in my family had repeated tick bites in the same

> back

> > yard. Our other son is probably also infected, but he has not

been

> > sick yet and has not been interested to be tested. I respect

that.

> I

> > also am concerned for him. The older brother did not show signs

of

> > illness until he was about 30 years old.

> >

> > I think you might find it interesting to call IgeneX and discuss

> your

> > questions with Dr. Shah (not sure exactly how to spell her name).

> >

> > a

> >

> > >

> > >

> > > > Let me backtrack and keep things simple. I'm not trying to

> > diagnose

> > > > myself by comparing myself to Bush.

> > >

> > > Well, I know. I just always think in terms of whether something

> can

> > be

> > > established as fact, or not. As in, with 90-99% confidence. But

I

> > > realize that when we make treatment decisions we often rely on

> > > statements we accept with 60%, or even 25% confidence (often a

> > complex

> > > network of such statements).

> > >

> > >

> > > > The reason they think I have babesia is because I do so well

on

> > > Zithromax.

> > >

> > > How sound can that deduction be, considering borrelia is

> exquisitely

> > > sensitive to zith?

> > >

> > >

> > > > My case is simple. I have a positive western blot from

IgeneX.

> My

> > > husband and son do also. We all have a positive urine antigen

> with a

> > > reverse western blot on that. We have borrelia period, case

> closed.

> > >

> > > Well, that reverse WB is an interesting result. Borrelia *could*

> > > infect benignly (not that that means you shouldn't try to kill

it

> > > anyway, in case it is harming you). Therefore it would be even

> more

> > > interesting a result if the positive reverse WB correlated well

> with

> > > CFS. Sounds like Igenex is trying to do just that:

> > >

> > > " [Q.] Why don't we find Lyme antigen studies published in the

> > > mainstream scientific journals?

> > >

> > > " Lyme is a political " hot potato " and editors must

unfortunately

> > make

> > > tough decisions that usually follow the academic mainstream. We

> have

> > > tried unsuccessfully and will continue to submit studies.

> Currently

> > we

> > > have a seven-center study underway regarding Lyme symptoms and

the

> > > detection of antigen in urine. This study will be submitted for

> > > publication. "

> > >

> > > Well, their claim about the climate is not totally unbelievable,

> > > considering that papers on lyme are likely to be sent to

Steere,

> > etc,

> > > for review. But anything would be better than nothing. Some

people

> > > actually do assume that anything published in The Journal That

No

> > One

> > > Reads must be crap, but lots of people don't. And there are

> journals

> > > now like PLoS One that are not reviewed for anything other than

> > > methodological logic. In fact I don't know if their review is

even

> > > sent to peers in the field or just done in house. At worst, you

> > could

> > > self-publish it on the internet, even though that makes you

look

> a

> > bit

> > > roguish. At least people could read it, ja? Or start/run your

own

> > > journal like what's-his-name apparently does/did (or something

> like

> > > that; I don't really know exactly how that worked).

> > >

> > > Even once you show that positivity correlates with symptoms,

how

> > much

> > > of a possibility cross-reactivity could be - ie other non-Bb

> > antigens

> > > that could get in there and give a false positive - I'm not

really

> > > certain. It depends a lot whether you use monocolonal or

> polyclonal

> > > antibodies. If the same sample were positive using 4 or 5

> different

> > > monoclonals, I think that would give very high confidence that

you

> > > have the genuine Bb.

> > >

> >

>

[Guest guest]

Yeah, a lot of guesswork, even with testing. I just wish everyone could have a wide range of testing done to rule things in and out, and then like you say, it would be easier to interpret all the data and come up with some kind of logical hypothesis for treatment. As it is, it's like we know there's a fire that needs to be put out and we're just picking up random buckets and throwing whatever's in them on the fire. Could be water, could be oil, we don't know. penny Barb Peck <egroups1bp@...> wrote: Ah- but what's the quality of the testing - see my other note on sensitivity & specificity...WHen you talk about culturing a bacteris & running an abx sensitivity test on the organism- I agree 100% - you've ID the bad guy and found the right weapon...With some occult bugs you just can't do that - if they aren't in the blood or mucous- what do you do? Guess. That's what they all do ( Drs. that is).Barb> > ,> > I don't think Zithromax is considered the first choice to treat > > borrelia. It plus Mepron is a top choice for babesia. We all in my > > family had Lyme symptoms and all our symptoms cleared with > antibiotic > > treatment. My husband and I both do very well on Zithromax which > > again makes sense assuming we would most likely be infected with > the > > same bacteria.> > > > I have wondered for a few years now why IgeneX testing is not > > respected by the mainstream. I came into the Lyme area only in the > > past 4 years, so I don't know all the machinations that have gone > on.

> > I do think once you get a few positive western blot bands and a > > positive urine antigen that is also positive in a reverse western > > blot you are at pretty high odds that you have borrelia. > Furthermore, > > all three of us in my family had repeated tick bites in the same > back > > yard. Our other son is probably also infected, but he has not been > > sick yet and has not been interested to be tested. I respect that. > I > > also am concerned for him. The older brother did not show signs of > > illness until he was about 30 years old.> > > > I think you might find it interesting to call IgeneX and discuss > your > > questions with Dr. Shah (not sure exactly how to spell her name). > > > > a> > > > >> > > > > > > Let me backtrack and keep

things simple. I'm not trying to > > diagnose > > > > myself by comparing myself to Bush. > > > > > > Well, I know. I just always think in terms of whether something > can > > be> > > established as fact, or not. As in, with 90-99% confidence. But I> > > realize that when we make treatment decisions we often rely on> > > statements we accept with 60%, or even 25% confidence (often a > > complex> > > network of such statements).> > > > > > > > > > The reason they think I have babesia is because I do so well on> > > Zithromax. > > > > > > How sound can that deduction be, considering borrelia is > exquisitely> > > sensitive to zith? > > > > > > > > > > My case is simple. I have a positive western

blot from IgeneX. > My> > > husband and son do also. We all have a positive urine antigen > with a> > > reverse western blot on that. We have borrelia period, case > closed. > > > > > > Well, that reverse WB is an interesting result. Borrelia *could*> > > infect benignly (not that that means you shouldn't try to kill it> > > anyway, in case it is harming you). Therefore it would be even > more> > > interesting a result if the positive reverse WB correlated well > with> > > CFS. Sounds like Igenex is trying to do just that:> > > > > > "[Q.] Why don't we find Lyme antigen studies published in the> > > mainstream scientific journals?> > > > > > "Lyme is a political "hot potato" and editors must unfortunately > > make> > > tough decisions

that usually follow the academic mainstream. We > have> > > tried unsuccessfully and will continue to submit studies. > Currently > > we> > > have a seven-center study underway regarding Lyme symptoms and the> > > detection of antigen in urine. This study will be submitted for> > > publication."> > > > > > Well, their claim about the climate is not totally unbelievable,> > > considering that papers on lyme are likely to be sent to Steere, > > etc,> > > for review. But anything would be better than nothing. Some people> > > actually do assume that anything published in The Journal That No > > One> > > Reads must be crap, but lots of people don't. And there are > journals> > > now like PLoS One that are not reviewed for anything other than> > >

methodological logic. In fact I don't know if their review is even> > > sent to peers in the field or just done in house. At worst, you > > could> > > self-publish it on the internet, even though that makes you look > a > > bit> > > roguish. At least people could read it, ja? Or start/run your own> > > journal like what's-his-name apparently does/did (or something > like> > > that; I don't really know exactly how that worked).> > > > > > Even once you show that positivity correlates with symptoms, how > > much> > > of a possibility cross-reactivity could be - ie other non-Bb > > antigens> > > that could get in there and give a false positive - I'm not really> > > certain. It depends a lot whether you use monocolonal or > polyclonal> > > antibodies. If

the same sample were positive using 4 or 5 > different> > > monoclonals, I think that would give very high confidence that you> > > have the genuine Bb.> > >> >>

[Guest guest]

Barb

This isn't science anymore...You have people with decent microscopes

filming spirochetes on a daily basis, aka Dr , so everything

Igenex does is a freakin waste of money...The only thing that needs

establishing, IN A GOOD SCIENCE sort of way, is that your actually

observing Borrelia, not the spriochetes just about everyone has in

there mouths.

Are people that stupid that they can't see that someone making

millions of dollars from testing for bands ain't really interested in

the truth.Imagine if They filmed your spirochetes and made sure they

were borrelia- there business model would suffer, all the expensive

crap there doing under the heading of suppsoed good science would

become useless..You would never fail in front of congress with a

video of spirochetes in your blood, then isolated and confirmed

borrelia- would you?

The other biggy is that you have millions of people in the big city

suffering without a ground swell from the poeple on the front

lines.THIS PART IS WERE IT ALL FALLS APART, IN EVERYONE " S BIG PICTURE

OF LYME DISEASE IMO..It's like people complaining they have shrapnell

wounds and they haven't been anywhere near Iraq..

> >

> >

> >

> >

> >

> > > That's part of the whole testing mess. I think every lab might

> have

> > > their own intensity criteria...

> > >

> > > and in some labs- like MAYO the inensity measurement can be a

> hair

> > > under meeting criteria and they call it a 'negative band'...

> where as

> > > IGENEX has an equivocal intensity range.. THAT's the big

> difference..

> >

> >

> > Right, exactly. It's different from what everyone else is doing,

so

> it

> > raises certain questions, such as, might this sort of faint

> reactivity

> > be present in inflammatory patients against many different

> pathogens.

> >

>

[Guest guest]

You make several good points... and here they are with my comments:

TONY SAID: The only thing that needs

> establishing, IN A GOOD SCIENCE sort of way, is that your actually

> observing Borrelia, not the spriochetes just about everyone has in

> there mouths.

Barb replies:

EXACTLY.. and how do you propose we do that???? The Bradford people

are already out there with their 25,000 dollar scopes MIS-identifying

things (I know becuase I had it done and I- a Lay person - knew more

than the " DR " behind the scope.). And isn't that what Bowen is

SUPPOSED to be doing??

Tony Said:

> Are people that stupid that they can't see that someone making

> millions of dollars from testing for bands ain't really interested

in

> the truth.

Barb Replies:

Well yes- people are that stupid. Remember who was voted in as

President and Vice president - and how silent the country is even

when it's obvious we're in the process of going down the sh*tter...

and we want is entertainment - not the truth..

So yah- people are that stupid.

>

> Barb

> This isn't science anymore...You have people with decent

microscopes

[Guest guest]

Barb

the commonsense part of the science equation still hasn't been

satisfied. You've also got to get around the part that see's these

forums, lyme/cfs, being occupied by 4 woman to every man..Malaria or

many other ilness ain't driven the same way- so you really need to go

back

and understand what types of things can drive these diseases...IMO

I'm comfortable that hormones drive the bugs and I could possably

tinker with this theory if I could get the hormones...

Again any court presented with this stuff would have to find the

medical establishment NOT GUILTY of not taking this up, when the

science really isn't stacking up...

tony

> >

> > Barb

> > This isn't science anymore...You have people with decent

> microscopes

>

[Guest guest]

> OK- No- You're not understanding the point I was trying to make.

OK, I'll try to read you really carefully.

> In all tests- there are raw data that is interpreted to 'some'

> criteria to be deemed either positive or negative- either in or out

> of range.

>

> Igenex reports the 'raw' data to the physician - THAT's the

> difference. Mayo tests show the bands that are 'faint'i.e that don't

> reach their intensity criteria - but they won't tell you what they

> are..

Well, rawer yet would be a photo of the blot.

> That's why Igenex is open to so much critism -

Isn't there another reason too - that their results tend to be more

positive than other labs' results (I am not 100% certain of this)?

> What your talking about is called specificity - how specific to the

> particular pathogen is the test- can there be cross reactivity??

>

> Then there's sensitivity- how sensitive is the test? If a test has

> low sensitivity but very high specificity and you test positive -

> then you probably have what they say you have... (you always have a

> much greater change to test false negative with this type)

>

> If a test is extremely sensitive but not very specific- then who

> knows what you have even if you test positive..(False positives is

> common here).

I see the distinction... but even if all CFS are positive (largely

because of faint bands) and all normals are negative (thus 100%

sensitivity and 100% specificity), how do I know that's because of

active Bb infection? Perhaps that would be true for a lot of different

microbes, just because CFS patients have chronically active immune

systems.

I'm not 100% confident that this concern of mine is well-precedented

as a dead-serious concern. It's just something that comes to mind.

There is at least some precedent. Here's a PDF concerning

false-positive serologies for HIV, CMV, and other viruses in SLE:

http://lup.sagepub.com/cgi/reprint/7/1/61

This is a little unfair, because SLE is (probably) a Th2 disease in

which it is often felt that there is some hyperactivity of B cells

which might be absent in Th1 immune diseases. (Even if SLE actually

does not have a Th2 pathogenesis, it certainly does have more Th2

abnormalities than most other immune diseases.) However,

false-positive syphilis serology occurs not only in lupus but also in

RA, which has fewer serologic abnormalities (though I admit the

rheumatoid factor antibody is frequently present):

" 1. Diseases which produce acute biologic false-positive VDRL

[syphilis] results (i.e. positive during the course of illness):

Various febrile illnesses

Immunizations

Pregnancy and aging may also cause false positives

2. Diseases which produce chronic false positive VDRL results

(positive indefinitely):

collagen diseases, especially lupus erythematosus and rheumatoid

arthritis

leprosy

treponematoses, especially yaws and pinta. "

Finally,

" Summary Three patients are reported with false positive

enzyme-linked immunosorbent assay (ELISA) for IgG antibodies against

Borrelia burgdorferi, respectively associated with undifferentiated

connective tissue disease or systemic lupus erythematosus. These cases

further document that Lyme serology should be interpreted with caution

and within the clinical context. "

I utterly admit and underline that these patients are just like you,

Barb. Though I'm not actually certain whether you actually met the Am

Col of Rheum criteria for SLE or discoid lupus. And of course you

remitted on abx after long-term treatment. So perhaps their " false

positive " serologies are not false. On the other hand it has to be

considered that they could be.

I don't really know how common any of these false / possibly false

positivities are. That's a key question which I probably don't have

enough interest to dig into myself.

Now, what the traditionalists like Steere have to do is a lot simpler.

They can compare to a gold standard, like people with EM. Anyone who

is, quantitatively, as seropositive as an EM patient, and has some

reasonable symptoms, must be infected or at least exposed. So there's

less complexity to that than there is in figuring out what's up with

low-titer seropositivities.

Finally, I have a question. Are healthies on the street *completely*

unreactive on a lyme WB, or do they have trace bands? If they do, it's

pretty easy to argue that nonspecific B cell stimulation due to

inflammatory disease should amplify their bands somewhat. If their

lyme WBs are usually absolutely blank, then it's harder to argue that

inflammatory disease would cause them to " sprout " some faint anti-Bb

bands. Which scenario is the case, I really don't know, but it's

probably in the literature somewhere.

I guess that, considering how I have more questions than answers, my

tone in discussing IGeneX was more critical than I can really justify.

Still, I do have the questions.

I guess, to be perfectly transparent, I was somewhat turned off when I

saw someone on lymenet, *apparently* someone from high up at IGeneX,

thanking everyone for participating in some lyme-political campaign

and " standing up for our view of the disease " or some words to that

effect. I understand there's a very concrete, perhaps sometimes

life-and-death need to stand up politically, but at the same time

science needs to be detached and scientific controversies need to be

addressed through the scientific community. I guess IGeneX and Bowen

know what they have tried to do on that scientific front, but I don't,

so it's all too easy for me to get frustrated, perhaps without mugh

justification. I don't know whether IGeneX, or anyone in particular,

supported it, but I think this whole business of getting IDSA

investigated is probably quite excessive and silly and may well impede

the resolution of these things in the scientific community. And that

resolution is what really matters. Only the scientific community can

repletely demonstrate whether the pathogeneses we are interested are

correct, and if so, get billions and billions of dollars spent to

advance therapy. Otherwise we are going nowhere. Current antibacterial

therapies are pretty poor overall, though probably at the same time

well worth attempting for many or most people in our situation. It's

very frustrating when you read the old, very old Miklossy papers on Bb

in Alzheimer's and realize how this whole thing has just been bogged

down in stalemate and stigma for decades. Only a shift in scientific

consensus will ever really change things, and it can happen, and most

scientists are open-minded on the whole, once there is something to

really grab on to.

> Tehn throw in the 'criteria' - like you have to have 5 out of 10

> bands positive- and you get the picture..

>

> In a disease like Malaria- they STILL look at viable organisms in

> blood.. they don't even have a Western Blot for Malaria- nor do they

> count any anybody titers- they go by organisms present and symptoms.

>

> Testing just sucks for Lyme. And I know from experience- You can have

> Lyme and have it mis-dxed as various things... then be treated

> totally wrong & probably make things much worse and muddy the

> diagnostic waters even more.

>

> Barb

> PS- I'll interpret the raw data thankyouverymuch myself... if I could

> get StoneyBrook to release their raw data I'da hate my test done

> there... but no one wants to release raw data becuase it's opne to

> interpretation! Now we're going around the Rosie!!

>

>

> >

> >

> >

> >

> >

> > > That's part of the whole testing mess. I think every lab might

> have

> > > their own intensity criteria...

> > >

> > > and in some labs- like MAYO the inensity measurement can be a

> hair

> > > under meeting criteria and they call it a 'negative band'...

> where as

> > > IGENEX has an equivocal intensity range.. THAT's the big

> difference..

> >

> >

> > Right, exactly. It's different from what everyone else is doing, so

> it

> > raises certain questions, such as, might this sort of faint

> reactivity

> > be present in inflammatory patients against many different

> pathogens.

[Guest guest]

> This isn't science anymore...You have people with decent microscopes

> filming spirochetes on a daily basis, aka Dr , so everything

> Igenex does is a freakin waste of money...

That needs to be proved with fluorescent Ab, in my opinion, like

Bowen. But someone else needs to confirm Bowen's work, cause that's

how science works.

> Are people that stupid that they can't see that someone making

> millions of dollars from testing for bands ain't really interested in

> the truth.

Well, that's *possible*, but there's no serious evidence of that.

> Imagine if They filmed your spirochetes and made sure they

> were borrelia- there business model would suffer, all the expensive

> crap there doing under the heading of suppsoed good science would

> become useless..You would never fail in front of congress with a

> video of spirochetes in your blood, then isolated and confirmed

> borrelia- would you?

Bingo, that's exactly what I said to Dr Jemsek in email when he was

facing some medical board. I don't get why no one takes the Bowen

assay and runs with it, if the thing is really kosher. Antibody

cross-reactivity does occur and could impact that evidence, but there

are easy ways of strengthening that evidence.

[Guest guest]

I said:

> Bingo, that's exactly what I said to Dr Jemsek in email when he was

> facing some medical board. I don't get why no one takes the Bowen

> assay and runs with it, if the thing is really kosher. Antibody

> cross-reactivity does occur and could impact that evidence, but there

> are easy ways of strengthening that evidence.

To elaborate - my real point here, as I always mention, is that the

Bowen thing might well be a lot *easier* and more reproducible than

stuff that has been done in the past by Miklossy, Mattman, and others,

which has been disconfirmed. Lots of stuff is hard to reproduce. If

you're trying to break into mainstream with a concept that the

mainstream perceives as whoa totally cheesy, then it really, really

helps to have the most reproducible demonstration you can get. You

could really go places....

But I've seen sooooo much unreproducible/contradictory/untrue stuff

published in almost every sub-subfield of biology, that I'm not going

to accept that the Bowen stuff is true/reproducible on the basis of

one lab's work. So ILADS, where art thou? Rich people? Someone?

Anyone? With several thousand dollars worth of equipment, the truth

can be had. And why shouldn't it be demonstrated mano a mano when

these ILADS doctors get called in for nonconformance? And if no one

will publish it, why shouldn't it be set up as a floor demonstration

at the IDSA conference? Why shouldn't someone drive over to NAIAD and

just show them? There has to be some way to get this done by hook or

crook, if the Bowen stuff is accurate. There is a certain amount of

closed-mindedness but 10,000 different scientists are not ALL going to

refuse to look down a microscope. I know there are lots of receptive

minds out there.

[Guest guest]

Tony,

On the topic of common sense, women's symptoms may be more

debilitating, but that doesn't mean men are not infected at equal

rates. I say this because my husband and son are both infected with

borrelia but have never exhibited the severe level of symptoms I have,

or at least not for as long as I have.

If you compare borreliosis to tetiary syphillis - first of all not

everyone infected with syphillis gets tertiary syphillis, and second,

the symptoms are called the great masquarade because they vary from

person to person. I think borreliosis is exactly like this. We really

don't know how many people are infected and then labeled with

various " autoimmune " disease labels or other...

Then you have the problem of co-infections. It may be that women tend

to get more infections over time, and this may relate to hormonal

issues or even pregnancy which suppresses the immune system in some

ways.

a

>

> Barb

> the commonsense part of the science equation still hasn't been

> satisfied. You've also got to get around the part that see's these

> forums, lyme/cfs, being occupied by 4 woman to every man..Malaria or

> many other ilness ain't driven the same way- so you really need to

go

> back

> and understand what types of things can drive these diseases...IMO

> I'm comfortable that hormones drive the bugs and I could possably

> tinker with this theory if I could get the hormones...

> Again any court presented with this stuff would have to find the

> medical establishment NOT GUILTY of not taking this up, when the

> science really isn't stacking up...

> tony

>

[Guest guest]

,

You are oversimplifying the situation Jemsek was in, as I suspect you

know. His main downfall was that a patient given IV antibiotics died.

Personally I don't think this was his fault. The NC medical board took

this up as a crusade against diagnosing and treating Lyme disease in

the south. Jemsek was the sacrificial lamb. At this point in history

would Jemsek been able to protect himself by using Bowen as an

agrument for anything? NO!

It is despicable what has happened to Jemsek. He is respected

throughout the world as an AIDS specialist, but the medical powers

that be are just NUTS when it comes to the reality of tick borne

infections - especially in the south of the US. My own family members

are victims of this disgraceful stupidity.

a Carnes

> Bingo, that's exactly what I said to Dr Jemsek in email when he was

> facing some medical board. I don't get why no one takes the Bowen

> assay and runs with it, if the thing is really kosher. Antibody

> cross-reactivity does occur and could impact that evidence, but there

> are easy ways of strengthening that evidence.

>

[Guest guest]

Sex differences are not unknown in infection:

SEX DIFFERENCES IN SUSCEPTIBILITY TO INFECTIONS -- Washburn et al ...

Sex differences in vulnerability to infectious diseases have been

defined by a search of the world's literature and a study of the s

Hopkins Hospital ...

pediatrics.aappublications.org/cgi/content/abstract/35/1/57 - Similar

pages

They are also well known in idiopathic immune diseases. Most are are

female dominated but some are not (at least one of the axial

arthritides is male dominated).

Generally, females are seen as more immunocompetant. Why this should

be, I don't know.

>

> Tony,

> On the topic of common sense, women's symptoms may be more

> debilitating, but that doesn't mean men are not infected at equal

> rates. I say this because my husband and son are both infected with

> borrelia but have never exhibited the severe level of symptoms I have,

> or at least not for as long as I have.

>

> If you compare borreliosis to tetiary syphillis - first of all not

> everyone infected with syphillis gets tertiary syphillis, and second,

> the symptoms are called the great masquarade because they vary from

> person to person. I think borreliosis is exactly like this. We really

> don't know how many people are infected and then labeled with

> various " autoimmune " disease labels or other...

>

> Then you have the problem of co-infections. It may be that women tend

> to get more infections over time, and this may relate to hormonal

> issues or even pregnancy which suppresses the immune system in some

> ways.

>

> a

>

>

> >

> > Barb

> > the commonsense part of the science equation still hasn't been

> > satisfied. You've also got to get around the part that see's these

> > forums, lyme/cfs, being occupied by 4 woman to every man..Malaria or

> > many other ilness ain't driven the same way- so you really need to

> go

> > back

> > and understand what types of things can drive these diseases...IMO

> > I'm comfortable that hormones drive the bugs and I could possably

> > tinker with this theory if I could get the hormones...

> > Again any court presented with this stuff would have to find the

> > medical establishment NOT GUILTY of not taking this up, when the

> > science really isn't stacking up...

> > tony

> >

>

[Guest guest]

On Mon, Aug 13, 2007 at 06:28:54PM -0000, wrote:

>Finally, I have a question. Are healthies on the street *completely*

>unreactive on a lyme WB, or do they have trace bands?

I was told by my neurologist, as regards a certain band on the Western

Blot for Lyme (I forget which), that a third of the general population

are reactive in that band.

I had another look at the IDSA position statement [orthodox medicine]

recently. It does allow for the possibility that " post-Lyme syndrome "

might be caused by some bacteria other than Borrelia burgdorferi. It's

just a single sentence, obviously put in so that if they ever have to,

they can point to it and say " See, we allowed for that possibility " .

They don't draw any conclusions from it, or say anything like " Until the

nature of these possible bacteria is elucidated, empirical antibiotic

treatment might be appropriate " , but they _have_ covered their asses on

this one.

--

Norman Yarvin http://yarchive.net

[Guest guest]

I have to agree that hormones

play a role in here someplace. I don't think it's an accident that my

wife took a very sharp left turn for the worse exactly two months after

her last period. It would be interesting to track the health of women

with CFS/ME, Fibro, MCS, etc. before and after their menses stopped.

I'm willing to bet that profound changes (either for better or worse)

are not uncommon. I wonder if anyone has bothered to look at this

angle.

Many CFS/ME patients cannot tolerate HGH when administered. It causes

a huge "crash", whereas in "normies" it typically improves well-being.

Also, one often hears of women whose CFS/ME symptoms greatly improve

during pregnancy, then revert afterwards.

--Bob

pjeanneus wrote:

Tony,

On the topic of common sense, women's symptoms may be more

debilitating, but that doesn't mean men are not infected at equal

rates. I say this because my husband and son are both infected with

borrelia but have never exhibited the severe level of symptoms I have,

or at least not for as long as I have.

If you compare borreliosis to tetiary syphillis - first of all not

everyone infected with syphillis gets tertiary syphillis, and second,

the symptoms are called the great masquarade because they vary from

person to person. I think borreliosis is exactly like this. We really

don't know how many people are infected and then labeled with

various "autoimmune" disease labels or other...

Then you have the problem of co-infections. It may be that women tend

to get more infections over time, and this may relate to hormonal

issues or even pregnancy which suppresses the immune system in some

ways.

a

>

> Barb

> the commonsense part of the science equation still hasn't been

> satisfied. You've also got to get around the part that see's these

> forums, lyme/cfs, being occupied by 4 woman to every man..Malaria

or

> many other ilness ain't driven the same way- so you really need to

go

> back

> and understand what types of things can drive these diseases...IMO

> I'm comfortable that hormones drive the bugs and I could possably

> tinker with this theory if I could get the hormones...

> Again any court presented with this stuff would have to find the

> medical establishment NOT GUILTY of not taking this up, when the

> science really isn't stacking up...

> tony

>

[Guest guest]

> ,

> You are oversimplifying the situation Jemsek was in, as I suspect you

> know. His main downfall was that a patient given IV antibiotics died.

> Personally I don't think this was his fault. The NC medical board took

> this up as a crusade against diagnosing and treating Lyme disease in

> the south. Jemsek was the sacrificial lamb. At this point in history

> would Jemsek been able to protect himself by using Bowen as an

> agrument for anything? NO!

I don't know anything about the death, but honestly I don't see how I

am oversimplifying. Many, many patients are killed, harmed, or

impoverished by medical treatments of all kinds. This risk is accepted

when it can be established that the average expected benefits exceded

the average expected risks and expense.

The guys who went after Jemsek alleged there was no compelling

evidence that the benefit of abx should be expected to be greater than

the risk of abx.

If you can prove your blood is crawling with bacteria, it's compelling

evidence for treatment abx. Therefore I maintain that this whole

affair is surreal, if indeed the Bowen thing is correct and reproducible.

Anyway, I agree that what happened to Jemsek is sad and wrong. There

is some evidence for his side. Thus, whether or not one agrees there

is enough evidence out there that insurance firms should be legally

compelled to pay for ILADS treatment, at least everyone should all

agree that ILADS treatment ought to be tolerable for those who want

it. Patients should simply be advised that ILADS treatment is

currently out of the mainstream. Then they won't be surprised to learn

that later on down the line, as some of Jemsek's patients claimed to be.

> It is despicable what has happened to Jemsek. He is respected

> throughout the world as an AIDS specialist, but the medical powers

> that be are just NUTS when it comes to the reality of tick borne

> infections - especially in the south of the US. My own family members

> are victims of this disgraceful stupidity.

>

> a Carnes

>

>

> > Bingo, that's exactly what I said to Dr Jemsek in email when he was

> > facing some medical board. I don't get why no one takes the Bowen

> > assay and runs with it, if the thing is really kosher. Antibody

> > cross-reactivity does occur and could impact that evidence, but there

> > are easy ways of strengthening that evidence.

> >

>

[Guest guest]

> >Finally, I have a question. Are healthies on the street *completely*

> >unreactive on a lyme WB, or do they have trace bands?

>

> I was told by my neurologist, as regards a certain band on the Western

> Blot for Lyme (I forget which), that a third of the general population

> are reactive in that band.

Could be the flagellin one. I think that one is highly cross-reactive

with the flagellins of many other bacterial taxa.