Re: not trusting the tests

[Guest guest]

Bosik uses german western blot, I have the number of it too and its

identification and he also uses inhouse ragent, his own western blot. Maybe its

ame WB blot which they use in Koeln. I can find it and sent it to you to check.

HUlinska laso developed her won WB tests which are sensitive to czech

substrains. I was OspA posiv'tive there, she told me over the phone that I may

have borrelia but the tests for doctor is borderline, that means negative

despite the fact that specific antigen s are positive.

But I see its same in Dutch. same verywhere. At least Germans are a bit ahead.

M

________________________________

From: knot_weed <tek0nik@...>

Sent: Fri, March 11, 2011 10:16:43 PM

Subject: [ ] not trusting the tests

>

> Czech doctors do not trust Bozsiks tests and Dual Dur so for them nothing is

P.S.: that doesn't say anything about the quality of the tests. We have the same

issue in Netherlands with the tests from the well known (and VERY reliable) lab

in Cologne, Labor Koeln. This lab was started by Prof. Ackermann, who did much

of the first discoveries around Borrelia and Lyme in Europe; they are very

experienced.

Many Dutch doctors say 'everyone tests positive with this lab' which is plain

wrong (I know many people who tested negative there ...). They prefer to trust

their own pathetic tests that are totally worthless. And btw, most of

these doctors are totally unable to read a Western Blot test. Even if it is

positive they might say there is no infection.

And with the Dutch CDC we have similar problems. I'm sure they know the tests

are unreliable, even their own research shows it. But they don't want to admit

that in public. So the best they can do to keep the situation under control is

say that tests from other (mostly foreign) labs are unreliable.

[Guest guest]

,

I can tell you that we are no further in the USA.

We have to drive 2 1/2 hrs. north to see our Lyme Doctor.

They give tests here and you can't even get into an Infectious Disease

Doctor to get a Western Blot, unless you test positive on the test,

which almost never happens, unless you were just biten by a tick and

actually have the tick in hand or have the rash.

Very frustrating!!

We have a major hospital here, but because our doctors don't believe in

chronic lyme, we had to drive 4 1/2 hrs. north to get my husbands

picc line in.

It is just ridiculous and we are just starting to talk about doing a Class

Action Suit.

Not sure how to start it, but feel we need to ruffle some feathers so people

can start getting treatment.

This is a very intelligent bacteria and hard enough to get rid of even if we

had the support of our doctors, but then when we don't, it just seems

impossible to deal with this disease!

I will send you the information on IgeneX, but I do think you will need a

doctor to take your blood and send it, they need a doctor's order I think

and then they will fax the doctor with the results.

Hoping you have a good day.

Dixie

On Fri, Mar 11, 2011 at 3:25 PM, martin spimr <spimar75@...> wrote:

>

>

>

>

> Bosik uses german western blot, I have the number of it too and its

> identification and he also uses inhouse ragent, his own western blot. Maybe

> its

> ame WB blot which they use in Koeln. I can find it and sent it to you to

> check.

> HUlinska laso developed her won WB tests which are sensitive to czech

> substrains. I was OspA posiv'tive there, she told me over the phone that I

> may

> have borrelia but the tests for doctor is borderline, that means negative

> despite the fact that specific antigen s are positive.

> But I see its same in Dutch. same verywhere. At least Germans are a bit

> ahead.

> M

>

> ________________________________

> From: knot_weed <tek0nik@...>

>

> Sent: Fri, March 11, 2011 10:16:43 PM

> Subject: [ ] not trusting the tests

>

>

> >

>

> > Czech doctors do not trust Bozsiks tests and Dual Dur so for them nothing

> is

>

> P.S.: that doesn't say anything about the quality of the tests. We have the

> same

> issue in Netherlands with the tests from the well known (and VERY reliable)

> lab

> in Cologne, Labor Koeln. This lab was started by Prof. Ackermann, who did

> much

> of the first discoveries around Borrelia and Lyme in Europe; they are very

> experienced.

>

> Many Dutch doctors say 'everyone tests positive with this lab' which is

> plain

> wrong (I know many people who tested negative there ...). They prefer to

> trust

> their own pathetic tests that are totally worthless. And btw, most of

>

> these doctors are totally unable to read a Western Blot test. Even if it is

>

> positive they might say there is no infection.

>

> And with the Dutch CDC we have similar problems. I'm sure they know the

> tests

> are unreliable, even their own research shows it. But they don't want to

> admit

> that in public. So the best they can do to keep the situation under control

> is

> say that tests from other (mostly foreign) labs are unreliable.

>

>

[Guest guest]

Hi Dixie, its same everywhere. Wa just recently got a law that in case of

negative Elsisa but unclear dg. or having specific klinical manifestation of

lyme, WB blot should be our right and indicated...

But not many doctors know on this.

BUt in general not even a single doctor who knows about lyme and is willing to

risk his career and treat with longterm ATB protcol. BUt taht Augsburg clinic is

some 4 hours drive from Prague :-)

MAybe leave Igenex, it would be very complicated and it seems much easier to

send the blood to Coeln then.

Today is not bad, but far to be good...

I am having some kind of mood disorder or depression from all of this...

And maybe thinking too much..

TAke care and thanx.

m

________________________________

From: dixieleeo tds.net <dixieleeo@...>

Sent: Sun, March 13, 2011 2:34:32 PM

Subject: Re: [ ] not trusting the tests

,

I can tell you that we are no further in the USA.

We have to drive 2 1/2 hrs. north to see our Lyme Doctor.

They give tests here and you can't even get into an Infectious Disease

Doctor to get a Western Blot, unless you test positive on the test,

which almost never happens, unless you were just biten by a tick and

actually have the tick in hand or have the rash.

Very frustrating!!

We have a major hospital here, but because our doctors don't believe in

chronic lyme, we had to drive 4 1/2 hrs. north to get my husbands

picc line in.

It is just ridiculous and we are just starting to talk about doing a Class

Action Suit.

Not sure how to start it, but feel we need to ruffle some feathers so people

can start getting treatment.

This is a very intelligent bacteria and hard enough to get rid of even if we

had the support of our doctors, but then when we don't, it just seems

impossible to deal with this disease!

I will send you the information on IgeneX, but I do think you will need a

doctor to take your blood and send it, they need a doctor's order I think

and then they will fax the doctor with the results.

Hoping you have a good day.

Dixie

On Fri, Mar 11, 2011 at 3:25 PM, martin spimr <spimar75@...> wrote:

>

>

>

>

> Bosik uses german western blot, I have the number of it too and its

> identification and he also uses inhouse ragent, his own western blot. Maybe

> its

> ame WB blot which they use in Koeln. I can find it and sent it to you to

> check.

> HUlinska laso developed her won WB tests which are sensitive to czech

> substrains. I was OspA posiv'tive there, she told me over the phone that I

> may

> have borrelia but the tests for doctor is borderline, that means negative

> despite the fact that specific antigen s are positive.

> But I see its same in Dutch. same verywhere. At least Germans are a bit

> ahead.

> M

>

> ________________________________

> From: knot_weed <tek0nik@...>

>

> Sent: Fri, March 11, 2011 10:16:43 PM

> Subject: [ ] not trusting the tests

>

>

> >

>

> > Czech doctors do not trust Bozsiks tests and Dual Dur so for them nothing

> is

>

> P.S.: that doesn't say anything about the quality of the tests. We have the

> same

> issue in Netherlands with the tests from the well known (and VERY reliable)

> lab

> in Cologne, Labor Koeln. This lab was started by Prof. Ackermann, who did

> much

> of the first discoveries around Borrelia and Lyme in Europe; they are very

> experienced.

>

> Many Dutch doctors say 'everyone tests positive with this lab' which is

> plain

> wrong (I know many people who tested negative there ...). They prefer to

> trust

> their own pathetic tests that are totally worthless. And btw, most of

>

> these doctors are totally unable to read a Western Blot test. Even if it is

>

> positive they might say there is no infection.

>

> And with the Dutch CDC we have similar problems. I'm sure they know the

> tests

> are unreliable, even their own research shows it. But they don't want to

> admit

> that in public. So the best they can do to keep the situation under control

> is

> say that tests from other (mostly foreign) labs are unreliable.

>

>

[Guest guest]

The ELISA seems to be the gateway test--and very unreliable. Many labs in the

U.S,. for example Labcorp, won't do both at the same time, even if the MD orders

both to be done. I went to Quest (which was out-of-network for me) and they

agreed to do the ELISA & Western Blot at the same time.

A good LLMD will give you a trial of antibiotics even if the tests are

negative--if other causes have been ruled out. You'll either start feeling

better, or, if you're beyond the acute stage, probably a lot worse. I had a

hellish 6 week herx, just from a month of Doxycycline 100 mg 2x/day. When I

found an LLMD he switched me to Amoxicillin, which I did better on--until I

plateaued after 3 months.

I've now put myself on Buhner's protocol (about 5 weeks). Symptoms have flared

which I take as a good sign. Have to keep at the detox.

Kim

[ ] not trusting the tests

>

>

> >

>

> > Czech doctors do not trust Bozsiks tests and Dual Dur so for them nothing

> is

>

> P.S.: that doesn't say anything about the quality of the tests. We have the

> same

> issue in Netherlands with the tests from the well known (and VERY reliable)

> lab

> in Cologne, Labor Koeln. This lab was started by Prof. Ackermann, who did

> much

> of the first discoveries around Borrelia and Lyme in Europe; they are very

> experienced.

>

> Many Dutch doctors say 'everyone tests positive with this lab' which is

> plain

> wrong (I know many people who tested negative there ...). They prefer to

> trust

> their own pathetic tests that are totally worthless. And btw, most of

>

> these doctors are totally unable to read a Western Blot test. Even if it is

>

> positive they might say there is no infection.

>

> And with the Dutch CDC we have similar problems. I'm sure they know the

> tests

> are unreliable, even their own research shows it. But they don't want to

> admit

> that in public. So the best they can do to keep the situation under control

> is

> say that tests from other (mostly foreign) labs are unreliable.

>

>

[Guest guest]

Why won't they do ELISA and western blot at the same time?

>

>

>

>

> Bosik uses german western blot, I have the number of it too and its

> identification and he also uses inhouse ragent, his own western blot. Maybe

> its

> ame WB blot which they use in Koeln. I can find it and sent it to you to

> check.

> HUlinska laso developed her won WB tests which are sensitive to czech

> substrains. I was OspA posiv'tive there, she told me over the phone that I

> may

> have borrelia but the tests for doctor is borderline, that means negative

> despite the fact that specific antigen s are positive.

> But I see its same in Dutch. same verywhere. At least Germans are a bit

> ahead.

> M

>

> ________________________________

> From: knot_weed <tek0nik@...>

>

> Sent: Fri, March 11, 2011 10:16:43 PM

> Subject: [ ] not trusting the tests

>

>

> >

>

> > Czech doctors do not trust Bozsiks tests and Dual Dur so for them nothing

> is

>

> P.S.: that doesn't say anything about the quality of the tests. We have the

> same

> issue in Netherlands with the tests from the well known (and VERY reliable)

> lab

> in Cologne, Labor Koeln. This lab was started by Prof. Ackermann, who did

> much

> of the first discoveries around Borrelia and Lyme in Europe; they are very

> experienced.

>

> Many Dutch doctors say 'everyone tests positive with this lab' which is

> plain

> wrong (I know many people who tested negative there ...). They prefer to

> trust

> their own pathetic tests that are totally worthless. And btw, most of

>

> these doctors are totally unable to read a Western Blot test. Even if it is

>

> positive they might say there is no infection.

>

> And with the Dutch CDC we have similar problems. I'm sure they know the

> tests

> are unreliable, even their own research shows it. But they don't want to

> admit

> that in public. So the best they can do to keep the situation under control

> is

> say that tests from other (mostly foreign) labs are unreliable.

>

>

[Guest guest]

I don't know why. Perhaps it has something to do with CDC & IDSA guidelines.

It was weird going to Labcorp with an order for both tests from my LLMD and

having the tech say we can't do both tests at the same time. Yet Quest did, no

questions asked. So maybe it has to do with insurance.

None of the current tests are very accurate. I know someone who tested

negative 3 times over a 18 yr period while suffering from a " mysterious

progressive neurological disease " --he finally tested positive for Lyme & Babesia

on the 4th test. He is fairly disabled and is not going to take antibiotics.

He says he wants to stay " out of the system. " I think he's found a good LL

Naturpath.

[ ] not trusting the tests

>

>

> >

>

> > Czech doctors do not trust Bozsiks tests and Dual Dur so for them nothing

> is

>

> P.S.: that doesn't say anything about the quality of the tests. We have the

> same

> issue in Netherlands with the tests from the well known (and VERY reliable)

> lab

> in Cologne, Labor Koeln. This lab was started by Prof. Ackermann, who did

> much

> of the first discoveries around Borrelia and Lyme in Europe; they are very

> experienced.

>

> Many Dutch doctors say 'everyone tests positive with this lab' which is

> plain

> wrong (I know many people who tested negative there ...). They prefer to

> trust

> their own pathetic tests that are totally worthless. And btw, most of

>

> these doctors are totally unable to read a Western Blot test. Even if it is

>

> positive they might say there is no infection.

>

> And with the Dutch CDC we have similar problems. I'm sure they know the

> tests

> are unreliable, even their own research shows it. But they don't want to

> admit

> that in public. So the best they can do to keep the situation under control

> is

> say that tests from other (mostly foreign) labs are unreliable.

>

>

[Guest guest]

>

> This is a very intelligent bacteria and hard enough to get rid of even if we

> had the support of our doctors, but then when we don't, it just seems

> impossible to deal with this disease!

I don't think Bb is very 'intelligent' or necessarily 'evil' for that matter. It

is very adaptable, can quickly respond to changing conditions (you could say it

is evolutionary intelligent, but the same goes for some simple viruses).

People sometimes claim Borrelia has many genes, but in fact it is at the very

low end of the scale in nature; only some mycoplasma's and most viruses have

less genetic material. Bb is fully dependent on its host (us) to survive, that

is why it doesn't want to leave and will fight you if you try to get rid of it.

In most animals Bb causes hardly any harm, we (and rhesus monkeys) are the

exception to the rule. As long as doctors don't recognize how serious the

problem is, we won't get any further. Because of their clueless and sometimes

evil attitude towards Lyme, there hasn't been any progress in treatment over the

last 20 years or so.

[Guest guest]

>

> Hi Dixie, its same everywhere. Wa just recently got a law that in case of

> negative Elsisa but unclear dg. or having specific klinical manifestation of

> lyme, WB blot should be our right and indicated...

very interesting; I would like to have that here as well. Most of the chronic

patients that I know initially had negative but (later on) positive WB. I

think discarding the and using WB instead would be a good step forward -

until we have something better, because you can be infected and still have

negative WB.

> But not many doctors know on this.

> BUt in general not even a single doctor who knows about lyme and is willing to

> risk his career and treat with longterm ATB protcol. BUt taht Augsburg clinic

is

> some 4 hours drive from Prague :-)

Augsburg too is under attack from the authorities I have heard, mostly because

of their longterm treatments. We see this same problem almost everywhere in the

US and Europe.

[Guest guest]

>

> Why won't they do ELISA and western blot at the same time?

it's all about money. An costs about 2.5 euro, a Western Blot about 12

euro (it takes more time from the lab workers). So they first do an , and

only if that is positive you can get a Western Blot - and that is only because

they hope the Western Blot will 'prove' that the positive is a 'false

positive' so they don't have to treat you.

There is no proof that this IDSA 'two-step protocol' makes any sense, but

despite that it is used all over the world. Its only 'value' is eliminating as

much patients as possible.

Another factor is patents: some of the IDSA guys and Yale get money from every

Lyme test. In Europe you can see that some countries force people to use a

patented lyme test from their own country (all of them variations of the basic

Lyme ). They do this even if their 'native' test is even worse than the

average (e.g. Denmark has a terrible quality ). Often this is

recommended by the same scientists / doctors who hold the patent for that test,

so they can make loads of money.

[Guest guest]

Knotweed,

You are absolutely right.

I heard that one person on the IDSA actually has the patent for the

test in the US.

Surprise, Surprise!!!

On Mon, Mar 14, 2011 at 3:00 AM, knot_weed <tek0nik@...> wrote:

>

>

>

>

>

> >

> > Why won't they do ELISA and western blot at the same time?

>

> it's all about money. An costs about 2.5 euro, a Western Blot about

> 12 euro (it takes more time from the lab workers). So they first do an

> , and only if that is positive you can get a Western Blot - and that is

> only because they hope the Western Blot will 'prove' that the positive

> is a 'false positive' so they don't have to treat you.

>

> There is no proof that this IDSA 'two-step protocol' makes any sense, but

> despite that it is used all over the world. Its only 'value' is eliminating

> as much patients as possible.

>

> Another factor is patents: some of the IDSA guys and Yale get money from

> every Lyme test. In Europe you can see that some countries force

> people to use a patented lyme test from their own country (all of them

> variations of the basic Lyme ). They do this even if their 'native'

> test is even worse than the average (e.g. Denmark has a terrible

> quality ). Often this is recommended by the same scientists / doctors

> who hold the patent for that test, so they can make loads of money.

>

>

>

[Guest guest]

Dogs and horses suffer harm from Bb.

In most animals Bb causes hardly any harm, we (and rhesus monkeys) are the

exception to the rule. As long as doctors don't recognize how serious the

problem is, we won't get any further. Because of their clueless and sometimes

evil attitude towards Lyme, there hasn't been any progress in treatment over the

last 20 years or so.

[Guest guest]

>

> Dogs and horses suffer harm from Bb.

yes, but less severe than humans. Many dogs in my countyr have asymptomatic Lyme

(e.g. anti-Bb antibodies in the blood but no symptoms). Neuroborreliosis and

related symptoms seems to be specific to humans and rhesus monkeys. Other

mammals can get symptoms like arthritis but most of them seem to be relatively

little affected.

I wonder if it is coincidence that domesticated animals are more sensitive. From

what I know wild deer don't have real lyme problems, and for rodents you have to

use specially bred rats that are prone to certain disease symptoms.

[Guest guest]

HOW NICE TO COMMUNICATE!!!

My information, after living in a highly endemic Lyme tick area for 12 years

with dogs and cats is this: Yes Cats get Lyme and it can hurt them -seems

like it can take a period of years with them... BUT apparently their major

presentation is arthritic and psychological. My own cats have a limp, and

are sometimes VERY aggressive. I know that they are Lyme positive by the

SNAP tests used for dogs. One was treated, the other no-- but I mean to

treat her v. soon. (Different country, lapses of time and convincing vet to

do the test)

I had to educate my Vet as he believed that Cats did not suffer or " catch'

Lyme. They do. But it seems that (anecdotally) they do not get as sick as

dogs.

DOG ALERT: Dogs that have Lyme can become VERY ILL in a short period. KIDNEY

disease is the most common manifestation of Tick Borne exposure/disease, and

DOGS CAN DIE OF THIS IN A V. SHORT PERIOD OF TIME.

NEVER hesitate to get your DOG to a Vet if you know it has been bitten., And

ask the Vet about Tick Repellents and research them yourself. Dogs can die

of Tick Diseases...all the best, good luck

On Mon, Mar 14, 2011 at 11:16 AM, knot_weed <tek0nik@...> wrote:

>

>

>

>

>

> >

> > Dogs and horses suffer harm from Bb.

>

> yes, but less severe than humans. Many dogs in my countyr have asymptomatic

> Lyme (e.g. anti-Bb antibodies in the blood but no symptoms).

> Neuroborreliosis and related symptoms seems to be specific to humans and

> rhesus monkeys. Other mammals can get symptoms like arthritis but most of

> them seem to be relatively little affected.

>

> I wonder if it is coincidence that domesticated animals are more sensitive.

> From what I know wild deer don't have real lyme problems, and for rodents

> you have to use specially bred rats that are prone to certain disease

> symptoms.

>

>

>

[Guest guest]

>

>

> DOG ALERT: Dogs that have Lyme can become VERY ILL in a short period. KIDNEY

> disease is the most common manifestation of Tick Borne exposure/disease, and

> DOGS CAN DIE OF THIS IN A V. SHORT PERIOD OF TIME.

I have heard this, but I wonder if this is caused by (undiagnosed) Babesia

instead of Borrelia? In some areas over 90% of dogs show anti-Bb antibodies,

while almost all of them are perfectly healthy. Just a small percentage gets

really ill from Borrelia.

Becoming very ill in a short time does not sind like Borrelia in general, but is

more typical of some Babesia and other tick coinfections.

[Guest guest]

>

QUOTE:> " Becoming very ill in a short time does not sind like Borrelia in

general, but is more typical of some Babesia and other tick coinfections.I

wonder if this is caused by (undiagnosed) Babesia instead of Borrelia? In some

areas over 90% of dogs show anti-Bb antibodies, while almost all of them are

perfectly healthy. Just a small percentage gets really ill from Borrelia. " END

QUOTE from other writer.

My response: OK -

It is sooo important to get correct info out when we write. I mean this is not a

science forum, but there is too much MIS- information out there in the Medical

Community - mis-information that hurts people who suffer from tick born diseases

- that I feel we owe it to the community to be as accurate as possible.

Guess we have to get quite specific here. When you say " in some areas " what

areas are you talking about? And not to put you on the defensive (my intention

is to get the correct info out here for all to share) where did you get the " 90%

" you refer to as a stat on dogs not getting " really ill " from Borrelia.? Where

are these dogs? Who wrote the stat?

1) Bb mutates rapidly. The Borellia strain most " generally " found in Europe

(btw- this too is different in say Ireland vs Poland - different strains in

different places) has quite different manifestations in both humans and in

animals. There are, at this writing over 300 KNOWN strains of Borrelia. Ticks

also vary in the pathogens they carry. In a recent example, an associate of mine

picked 42 ticks from ONE bird and examined them all for B. Burgdoferi and the

other common co-infections. Out of the 42, 21 carried the common N. American

strain of Borrelia - i.e. Burgdorferi, whilst 10 of the ticks from this one bird

also carried various co-paths, I do not have my notes to give the specifics. No,

you cannot say with certainty that Babs is the fast moving pathogen causing the

kidney failure in dogs. Most vets do not test for co-infections in animals, so,

is this relevant?

It is impossible to generalize on this. That is why I usually will say: Tick

Born Illness as opposed to " Lyme. "

It is not just Lyme we are dealing with, as you have pointed out.

It is not important how long a dog might remain asymptomatic-or which pathogen

causes the damage? Kidney disease is a serious and fast moving, often difficult

to treat disease in dogs.

If they are known to carry Borrelia, (and who knows what other tick born

disease/co-infection) then we must be constantly VIGILANT, watch them carefully,

not take the asymptomatic picture in stride.

That was my original point, though poorly stated. BE WATCHFUL if you know an

animal is infected.

My daughter is in the same boat! She is for the most part asymptomatic. But I

have to watch her ever so carefully - she has elevated inflammation markers for

instance. This is not a healthy thing for a young child to have.

And certainly it is a problem and a serious one for horses, for it is a possible

harbinger of connective tissue problems. (And of heart disease in humans.)

Meanwhile, I will treat my cat, because we just do not know enough about long

term effects to let it ride.

Hope I clarified what I was trying to say before.

All the best.

> >

> >

> > DOG ALERT: Dogs that have Lyme can become VERY ILL in a short period. KIDNEY

> > disease is the most common manifestation of Tick Borne exposure/disease, and

> > DOGS CAN DIE OF THIS IN A V. SHORT PERIOD OF TIME.

>

> I have heard this, but I wonder if this is caused by (undiagnosed) Babesia

instead of Borrelia? In some areas over 90% of dogs show anti-Bb antibodies,

while almost all of them are perfectly healthy. Just a small percentage gets

really ill from Borrelia.

>

> Becoming very ill in a short time does not sind like Borrelia in general, but

is more typical of some Babesia and other tick coinfections.

>

[Guest guest]

>

>

> Guess we have to get quite specific here. When you say " in some areas " what

areas are you talking about? And not to put you on the defensive (my intention

is to get the correct info out here for all to share) where did you get the " 90%

" you refer to as a stat on dogs not getting " really ill " from Borrelia.? Where

are these dogs? Who wrote the stat?

This comes from a Dutch vet who is also involved in human lyme research (his

father is a medical microbiologist). They have written several publications

about this. Data about sensitivity of dogs to Borrelia also comes from the

articles of Staubinger and co, who investigated this for different kinds of

dogs.

Data like this is gathered in many EU countries at least. I think testing for

tick infections in dogs is probably more reliable than for humans (especially

for the coinfections, there are some tests available in the open market).

The reason I made my comment is: dogs with Babs infection can get ill very

quickly and can die within a week (some kinds of dog are more sensitive). I have

never heard such a thing when it comes to Borrelia; direct death resulting from

Borrelia infection is very rare (less than a few %) both in dogs and humans and

nevere 'acute' AFAIK.

With suspected Babs it is important to act FAST.