Re: Test Interpretation assistance requested......

[Guest guest]

hi, igenex is the only lab that can be trusted. the tests are very unreliable

anyway, but a positve western blot indicates nothing but lyme, there would be no

other infection to give you a positive result. hope this helps, kurt

CC <cobchc@...> wrote: Hi all...thanks for all your great

posts...I know there are some

real knowledgeable folks on here and I was hoping to get your

assistance in interpreting some of my confusing test results.

I recently tested positive on an IgeneX IgG Western Blot test for

Lyme. My CD57 count from Lab Corps is 225. I have some muscle

weakness and some depression. My LLMD wants me to undergo a long

progam of Minicin/Benicar for about a year. He advises me that I

will still test positive for Lyme after a year of anti-biotics. All

of this sounds very suspect. Some physicians have advised me that

IGenex specializes in getting positive test results and that the Lab

cannot be trusted. Instead I should focus on the CD 57 count which

would indicate I am not suffering from chronic lyme. My doctor

advised that without treatment...I run the risk of developing

chronic lyme down the road....

Can any other condition trigger a positive Western Blot for

Lyme....Thanks all and God Bless!

[Guest guest]

Thanks Kurt....would you pursue a controversial long term anti-

biotic program based on this test?? My research, and even the test

itself indicates that false positives are possible due to HSV

infection, past mono or Epstien Barr infections etc. Burrascano

says that people with normal Cd-57 counts are probably sick with

something other than lyme.....my only sympoms are some transient

muscle aches and some transient depression/anxiety....I don't know

how you all cope with the complete uncertainty surrounding this

speculative illness....

Hi all...thanks for all your great

posts...I know there are some

> real knowledgeable folks on here and I was hoping to get your

> assistance in interpreting some of my confusing test results.

>

> I recently tested positive on an IgeneX IgG Western Blot test for

> Lyme. My CD57 count from Lab Corps is 225. I have some muscle

> weakness and some depression. My LLMD wants me to undergo a long

> progam of Minicin/Benicar for about a year. He advises me that I

> will still test positive for Lyme after a year of anti-biotics.

All

> of this sounds very suspect. Some physicians have advised me that

> IGenex specializes in getting positive test results and that the

Lab

> cannot be trusted. Instead I should focus on the CD 57 count which

> would indicate I am not suffering from chronic lyme. My doctor

> advised that without treatment...I run the risk of developing

> chronic lyme down the road....

>

> Can any other condition trigger a positive Western Blot for

> Lyme....Thanks all and God Bless!

>

>

>

>

>

>

>

[Guest guest]

Thanks to a primary dr. I had years ago he made me a skeptic about

IGeneX and LLMD's. I think the explanation is that it's epidemic,

but because of the CDC and their criteria for reporting Lyme, most

aren't getting reported. Bowen is another good lab, I hear their

test, Q-rrib (?) actually looks for the parachete, not the antibodies

like IGeneX.

At the www.CanLyme site you can read various articles, many from drs.

and about how the tests are miserable failures and that most of the

labs have gotten failing grades, too.

I don't know about the other things in your post.

jan

>

> Hi all...thanks for all your great posts...I know there are some

> real knowledgeable folks on here and I was hoping to get your

> assistance in interpreting some of my confusing test results.

>

> I recently tested positive on an IgeneX IgG Western Blot test for

> Lyme. My CD57 count from Lab Corps is 225. I have some muscle

> weakness and some depression. My LLMD wants me to undergo a long

> progam of Minicin/Benicar for about a year. He advises me that I

> will still test positive for Lyme after a year of anti-biotics.

All

> of this sounds very suspect. Some physicians have advised me that

> IGenex specializes in getting positive test results and that the

Lab

> cannot be trusted. Instead I should focus on the CD 57 count which

> would indicate I am not suffering from chronic lyme. My doctor

> advised that without treatment...I run the risk of developing

> chronic lyme down the road....

>

> Can any other condition trigger a positive Western Blot for

> Lyme....Thanks all and God Bless!

>

[Guest guest]

Well, I see my Lyme brain turned a spirochete into a parachete. LOL

Stinking Lyme brain!

jan

>

> Thanks to a primary dr. I had years ago he made me a skeptic about

> IGeneX and LLMD's. I think the explanation is that it's epidemic,

> but because of the CDC and their criteria for reporting Lyme, most

> aren't getting reported. Bowen is another good lab, I hear their

> test, Q-rrib (?) actually looks for the parachete, not the

antibodies

> like IGeneX.

>

> At the www.CanLyme site you can read various articles, many from

drs.

> and about how the tests are miserable failures and that most of the

> labs have gotten failing grades, too.

>

> I don't know about the other things in your post.

>

> jan

[Guest guest]

I think I would concentrate on the great CD-57 count. You have a good

immune system at work. What other reasons does the doctor suspect Lyme?

At 02:19 PM 1/19/2007, you wrote:

>Hi all...thanks for all your great posts...I know there are some

>real knowledgeable folks on here and I was hoping to get your

>assistance in interpreting some of my confusing test results.

>

>I recently tested positive on an IgeneX IgG Western Blot test for

>Lyme. My CD57 count from Lab Corps is 225. I have some muscle

>weakness and some depression. My LLMD wants me to undergo a long

>progam of Minicin/Benicar for about a year. He advises me that I

>will still test positive for Lyme after a year of anti-biotics. All

>of this sounds very suspect. Some physicians have advised me that

>IGenex specializes in getting positive test results and that the Lab

>cannot be trusted. Instead I should focus on the CD 57 count which

>would indicate I am not suffering from chronic lyme. My doctor

>advised that without treatment...I run the risk of developing

>chronic lyme down the road....

>

>Can any other condition trigger a positive Western Blot for

>Lyme....Thanks all and God Bless!

>

>

[Guest guest]

I agree the tests are not accurate, my LLMD which is very good, says the

co-infection tests are even less reliable than the BB and the Bowen looks

for the antigens in your blood, the spirochete, and yes the do have

negative tests.

At 06:35 PM 1/19/2007, you wrote:

>Thanks to a primary dr. I had years ago he made me a skeptic about

>IGeneX and LLMD's. I think the explanation is that it's epidemic,

>but because of the CDC and their criteria for reporting Lyme, most

>aren't getting reported. Bowen is another good lab, I hear their

>test, Q-rrib (?) actually looks for the parachete, not the antibodies

>like IGeneX.

>

>At the www.CanLyme site you can read various articles, many from drs.

>and about how the tests are miserable failures and that most of the

>labs have gotten failing grades, too.

>

>I don't know about the other things in your post.

>

>jan

>

>

> >

> > Hi all...thanks for all your great posts...I know there are some

> > real knowledgeable folks on here and I was hoping to get your

> > assistance in interpreting some of my confusing test results.

> >

> > I recently tested positive on an IgeneX IgG Western Blot test for

> > Lyme. My CD57 count from Lab Corps is 225. I have some muscle

> > weakness and some depression. My LLMD wants me to undergo a long

> > progam of Minicin/Benicar for about a year. He advises me that I

> > will still test positive for Lyme after a year of anti-biotics.

>All

> > of this sounds very suspect. Some physicians have advised me that

> > IGenex specializes in getting positive test results and that the

>Lab

> > cannot be trusted. Instead I should focus on the CD 57 count which

> > would indicate I am not suffering from chronic lyme. My doctor

> > advised that without treatment...I run the risk of developing

> > chronic lyme down the road....

> >

> > Can any other condition trigger a positive Western Blot for

> > Lyme....Thanks all and God Bless!

> >

>

>

[Guest guest]

Hi, CC,

Some of the bands on the western blot will be positive for infections other than

Borrelia - gum disease, for one. But IGeneX would not consider those to

indicate a positive result unless there were also positive bands that are

Borrelia-specific.

IGeneX is a very, very good lab, one of very few licensed by the state of New

York, and with very, very high test scores. Labs are given random samples to

run, and graded on their ability to correctly identify pathogens. IGeneX has

the highest scores out there - in the 98th percentile. They are GOOD.

But the tests are not going to be 100% accurate because we do not yet have

completely reliable tests. Your positive western blot results only tell you

that you have been exposed, and you have made antibodies. They do not say that

you definitely have an active infection. That determination can only be made by

evaluating your symptoms. Or you can do a PCR - preferably following an

antibiotic challenge, to see if actual spirochetes show up in your urine.

The muscle weakness and depression may be due to another cause. Have you ruled

out other, more mainstream diseases? It is also possible that, if you do have

Lyme, the CD-57 will fall over time. It will still be high in a more

recently-acquired infection.

Sorry there is no definite answer. I agree that I wouldn't be in a hurry to do

a year of antibiotics without more compelling evidence. Perhaps going the

Buhner route would be prudent? Or starting with Salt/C? Heat therapy? Then

re-test in a few months?

Best of luck in your healing, whatever you decide.

D.

CC <cobchc@...> wrote: Hi all...thanks for all your great posts...I know

there are some

real knowledgeable folks on here and I was hoping to get your

assistance in interpreting some of my confusing test results.

I recently tested positive on an IgeneX IgG Western Blot test for

Lyme. My CD57 count from Lab Corps is 225. I have some muscle

weakness and some depression. My LLMD wants me to undergo a long

progam of Minicin/Benicar for about a year. He advises me that I

will still test positive for Lyme after a year of anti-biotics. All

of this sounds very suspect. Some physicians have advised me that

IGenex specializes in getting positive test results and that the Lab

cannot be trusted. Instead I should focus on the CD 57 count which

would indicate I am not suffering from chronic lyme. My doctor

advised that without treatment...I run the risk of developing

chronic lyme down the road....

Can any other condition trigger a positive Western Blot for

Lyme....Thanks all and God Bless!

For free up to date information about Lyme disease and the known

co-infections delivered to your email address see:

Robynns_Lyme_List/

[Guest guest]

Thanks ...I have noticed that your responses are some of the

most valuable on the board...is there any chance I could chat with

you offline? My experience is that us sick folks are a lot more

knowledgable than most docs....and we don't have any incentive to

mislead or fabricate stuff....I have had zero exposure to ticks

recently and have not had any flu like symptoms since 1992. In the

summer of 1983 I had ticks crawling all over me while in the

military....but I never got sick from it. My high CD-57 count would

lead me to beleive that the Western blot is wrong or my immune system

has defeated Lyme. The doctor says I would show antibodies to Lyme

for life even if I treated lyme successfully with abx...so having

antibodies alone doesn't mean to much I think...in any event...feel

free to email off the board if you like....if not thanks anyway for

your many great posts!!

>

> Hi, CC,

>

> Some of the bands on the western blot will be positive for

infections other than Borrelia - gum disease, for one. But IGeneX

would not consider those to indicate a positive result unless there

were also positive bands that are Borrelia-specific.

>

> IGeneX is a very, very good lab, one of very few licensed by the

state of New York, and with very, very high test scores. Labs are

given random samples to run, and graded on their ability to correctly

identify pathogens. IGeneX has the highest scores out there - in

the 98th percentile. They are GOOD.

>

> But the tests are not going to be 100% accurate because we do not

yet have completely reliable tests. Your positive western blot

results only tell you that you have been exposed, and you have made

antibodies. They do not say that you definitely have an active

infection. That determination can only be made by evaluating your

symptoms. Or you can do a PCR - preferably following an antibiotic

challenge, to see if actual spirochetes show up in your urine.

>

> The muscle weakness and depression may be due to another cause.

Have you ruled out other, more mainstream diseases? It is also

possible that, if you do have Lyme, the CD-57 will fall over time.

It will still be high in a more recently-acquired infection.

>

[Guest guest]

Does anyone know much about testing cerebrospinal fluid for Lyme? I was

under the impression that it is the most accurate, although most invasive, way

to test. It seems it would be well worth it when blood tests are not

definitive but symptoms are present.

Patti

[Guest guest]

I concur, excellent advice.

At 11:14 PM 1/19/2007, you wrote:

>Hi, CC,

>

>Some of the bands on the western blot will be positive for infections

>other than Borrelia - gum disease, for one. But IGeneX would not consider

>those to indicate a positive result unless there were also positive bands

>that are Borrelia-specific.

>

>IGeneX is a very, very good lab, one of very few licensed by the state of

>New York, and with very, very high test scores. Labs are given random

>samples to run, and graded on their ability to correctly identify

>pathogens. IGeneX has the highest scores out there - in the 98th

>percentile. They are GOOD.

>

>But the tests are not going to be 100% accurate because we do not yet have

>completely reliable tests. Your positive western blot results only tell

>you that you have been exposed, and you have made antibodies. They do not

>say that you definitely have an active infection. That determination can

>only be made by evaluating your symptoms. Or you can do a PCR - preferably

>following an antibiotic challenge, to see if actual spirochetes show up in

>your urine.

>

>The muscle weakness and depression may be due to another cause. Have you

>ruled out other, more mainstream diseases? It is also possible that, if

>you do have Lyme, the CD-57 will fall over time. It will still be high in

>a more recently-acquired infection.

>

>Sorry there is no definite answer. I agree that I wouldn't be in a hurry

>to do a year of antibiotics without more compelling evidence. Perhaps

>going the Buhner route would be prudent? Or starting with Salt/C? Heat

>therapy? Then re-test in a few months?

>

>Best of luck in your healing, whatever you decide.

>

> D.

>

>CC <<mailto:cobchc%40>cobchc@...> wrote: Hi all...thanks

>for all your great posts...I know there are some

>real knowledgeable folks on here and I was hoping to get your

>assistance in interpreting some of my confusing test results.

>

>I recently tested positive on an IgeneX IgG Western Blot test for

>Lyme. My CD57 count from Lab Corps is 225. I have some muscle

>weakness and some depression. My LLMD wants me to undergo a long

>progam of Minicin/Benicar for about a year. He advises me that I

>will still test positive for Lyme after a year of anti-biotics. All

>of this sounds very suspect. Some physicians have advised me that

>IGenex specializes in getting positive test results and that the Lab

>cannot be trusted. Instead I should focus on the CD 57 count which

>would indicate I am not suffering from chronic lyme. My doctor

>advised that without treatment...I run the risk of developing

>chronic lyme down the road....

>

>Can any other condition trigger a positive Western Blot for

>Lyme....Thanks all and God Bless!

>

>For free up to date information about Lyme disease and the known

>co-infections delivered to your email address see:

><Robynns_Lyme_List/>http://health.groups.y\

ahoo.com/group/Robynns_Lyme_List/

>

>

[Guest guest]

My LLMD says mine being normal and the fact of nightsweats makes her

think coinfection of bartonella or babesia. I will try to remember

what you said about it to mention it to her.

I am probably repeating myself and I apologize, but I belong to

several groups where Lyme is the main topic or has become a hot topic.

jan

>

> Thanks Kurt....would you pursue a controversial long term anti-

> biotic program based on this test?? My research, and even the test

> itself indicates that false positives are possible due to HSV

> infection, past mono or Epstien Barr infections etc. Burrascano

> says that people with normal Cd-57 counts are probably sick with

> something other than lyme.....my only sympoms are some transient

> muscle aches and some transient depression/anxiety....I don't know

> how you all cope with the complete uncertainty surrounding this

> speculative illness....

[Guest guest]

hi cc, now that i know whats going on i probably wouldnt pursue long term abx. i

would personally use the natural approaches. have you joined lymestrategies? i

wouldnt let the disease, even if you consider it speculative, keep running its

horrid little course. kurt.

CC <cobchc@...> wrote: Thanks Kurt....would you pursue a

controversial long term anti-

biotic program based on this test?? My research, and even the test

itself indicates that false positives are possible due to HSV

infection, past mono or Epstien Barr infections etc. Burrascano

says that people with normal Cd-57 counts are probably sick with

something other than lyme.....my only sympoms are some transient

muscle aches and some transient depression/anxiety....I don't know

how you all cope with the complete uncertainty surrounding this

speculative illness....

Hi all...thanks for all your great

posts...I know there are some

> real knowledgeable folks on here and I was hoping to get your

> assistance in interpreting some of my confusing test results.

>

> I recently tested positive on an IgeneX IgG Western Blot test for

> Lyme. My CD57 count from Lab Corps is 225. I have some muscle

> weakness and some depression. My LLMD wants me to undergo a long

> progam of Minicin/Benicar for about a year. He advises me that I

> will still test positive for Lyme after a year of anti-biotics.

All

> of this sounds very suspect. Some physicians have advised me that

> IGenex specializes in getting positive test results and that the

Lab

> cannot be trusted. Instead I should focus on the CD 57 count which

> would indicate I am not suffering from chronic lyme. My doctor

> advised that without treatment...I run the risk of developing

> chronic lyme down the road....

>

> Can any other condition trigger a positive Western Blot for

> Lyme....Thanks all and God Bless!

>

>

>

>

>

>

>

[Guest guest]

Hi, CC,

There are many here who know more than I do. I've only been at this for a year

or so.

I'd be happy to talk to you - just not sure how much help I can be. None of us

can be certain of a diagnosis. We just do the best we can with the information

we have. I'm at nancy@... ('cause I do equine massage therapy, as well

as human).

Remind me of your symptoms - was it depression and tingling/numbness in your

arms? Is it the same on both sides? Any neck pain or stiffness? Swollen

glands? Any increase in clumsiness? Dropping things? Sometimes saying the

wrong word, or forgetting names? Ears ringing at all? Migraines?

When I get someone like you on my table, I might suspect Lyme, but I push that

to the back of my mind and work assuming simple nerve entrapment from skeletal

mal-alignment or muscle hypertonicity. Usually I can get it corrected. But if

it comes back, or is accompanied by other Lyme symptoms, I encourage them to get

it checked out, and I refer them to my LLMD. Then I shut up about it.

Most don't follow up, and I'm fine with that. I feel obligated to provide

information, but I am not invested in what people do with that information.

That said, have you tried seeing a clinical massage therapist, or PT, or

chiropractor for the physical symptoms? Might be worth a try. There might be a

simple mechanical reason, correctable by some focused deep tissue work and a

conscious change in posture. Ya never know.

D.

CC <cobchc@...> wrote: Thanks ...I have noticed that your responses

are some of the

most valuable on the board...is there any chance I could chat with

you offline? My experience is that us sick folks are a lot more

knowledgable than most docs....and we don't have any incentive to

mislead or fabricate stuff....I have had zero exposure to ticks

recently and have not had any flu like symptoms since 1992. In the

summer of 1983 I had ticks crawling all over me while in the

military....but I never got sick from it. My high CD-57 count would

lead me to beleive that the Western blot is wrong or my immune system

has defeated Lyme. The doctor says I would show antibodies to Lyme

for life even if I treated lyme successfully with abx...so having

antibodies alone doesn't mean to much I think...in any event...feel

free to email off the board if you like....if not thanks anyway for

your many great posts!!

>

> Hi, CC,

>

> Some of the bands on the western blot will be positive for

infections other than Borrelia - gum disease, for one. But IGeneX

would not consider those to indicate a positive result unless there

were also positive bands that are Borrelia-specific.

>

> IGeneX is a very, very good lab, one of very few licensed by the

state of New York, and with very, very high test scores. Labs are

given random samples to run, and graded on their ability to correctly

identify pathogens. IGeneX has the highest scores out there - in

the 98th percentile. They are GOOD.

>

> But the tests are not going to be 100% accurate because we do not

yet have completely reliable tests. Your positive western blot

results only tell you that you have been exposed, and you have made

antibodies. They do not say that you definitely have an active

infection. That determination can only be made by evaluating your

symptoms. Or you can do a PCR - preferably following an antibiotic

challenge, to see if actual spirochetes show up in your urine.

>

> The muscle weakness and depression may be due to another cause.

Have you ruled out other, more mainstream diseases? It is also

possible that, if you do have Lyme, the CD-57 will fall over time.

It will still be high in a more recently-acquired infection.

>

For free up to date information about Lyme disease and the known

co-infections delivered to your email address see:

Robynns_Lyme_List/