Re: [Lyme-aid] Please Help: Newbie Question re Tests

[Guest guest]

lynn.....

first of all( oldies know what i will say next....) LYME IS A CLINICAL

DIAGNOSES..

BY SYMPTOMS

.... blood and urine testing are in the range of at best 50-60%

accurate....with th luat (if done right ) one of the better tests but still

not reliable.....this is one thing we are trying to get ...accurate testing

......many of us have suffered needlessly due to docs who wanted high pos.

tests to treat......

i am on ssd for lyme since 1996 due to the fact i can no longer work ......i

was diagnosed (finally) with lyme 11 years ago......was symptomatic for lyme

2 years prior nut could not get a dx....so i have had lyme 13 years.....years

ago they thought that everyone with lyme had a " bullseye " only half

do......my 7yo daughter has lyme dx'ed right away....due to aperfect

bullseye....

to this day my testing (blood/urine) is so erratic that i refuse to go thru

anymore....waste of money me and my doc and the government know what i

have....test scores mean nothing to me......what does meen something is how i

feel.....usually like crap........hope this helps.......if ur doctor wants

numerous pos. tests......personally i would find a lllmd who will dx u

clincally as is called for with this disease.....

Reid

[Guest guest]

real quick note on the LUAT...my eldest son 17 next week,...was bit when he

was in 2nd grade and we can track a pattern of problems ever since....finally

got a WB on him...only two bands positive...any other doctor would have said

no lyme no way...thank god i took him to a lyme literate pedi...because we

can CLEARLY track years of symptoms...anyway he has been on Ceftin and Biaxin

for quite a few months now and the difference in how he is ..is just

astounding...he feels it too...mentally and physically

my sons single LUAT was 160ish...my daughter 86ish....my little son 0, 73,

100 (got wise to the lab screwing up and only sending out one sample)

Reid is def right..Lyme is a clinical diagnosis and I am so glad I finally

knew better than to accept a neg WB as no lyme which too many people may do

or let their doctors tell them b4 they know better...b

[Guest guest]

Lynn,

In very early Lyme, and -- more importantly -- in later stages of

disseminated Lyme, the body may not be producing antibodies to the Bb

spirochete.

Bb is a very slippery and sneaky organism and seems to be able to hide from

the immune system in many cases.

In my case I was negative on the ELISA and LUAT but positive on the PCR

(which detects the DNA of the spirochete).

Lyme is a clinical diagnosis. The tests are notoriously innacurate. That

means you can be negative on all the tests, but if you have the symptoms and

the chance of having been exposed (that is, the clinical picture is

consistent with Lyme Disease), a diagnosis is warranted and treatment

necessary.

See Dr. Burrascano's guidelines at http://www.lymenet.org/

Good luck,

Ken

[Lyme-aid] Please Help: Newbie Question re Tests

> From: " L Gehrmann " <airship5@...>

>

> What might cause a person's Lyme Urine ANTIGEN Test (IGeneX)

> to be positive (over 100 ng/mL) (anything over 32 ng/mL is

> considered positive) - while the Lyme Disease ANTIBODIES Test

> () is negative?

>

> The doc says a positive antigen test doesn't necessarily mean a

> person has Lyme Disease. Other conditions, such as autoimmune

> disorders, can cause the Lyme antigen to be elevated.

>

> Can anyone suggest some specific conditions or infections

> (or whatever) that can cause the Lyme antigen test to be positive

> in absence of actual Lyme Disease?

>

> Thanks for any help.

>

> Lynn

>

>

>

>

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[Guest guest]

Hi Lovette

Will you be at the conference in Ct this weekend? I am packing to go now.

Bev

[Guest guest]

RE: LUAT - Dr. Nick of Igenex Labs is speaking at the symposium

in Gettysburg on April 8th with a 45 minute slide presentation. I think

all of us are eager to hear how the LUAT and Igenex Labs differs in its

approach to testing and what it all means!!

Lovette

[Guest guest]

Lynn,

I agree with everything everybody else has said in regard to your question.

But was confused on one count. I have always known that the WB's, 's &

PCR's are notoriously inaccurate. And the LUAT has not been officially

approved yet. But I know tests such as the ANA (for Lupus) can cross react

with the Bb antibodies, but the LUAT checks for antigen. I wasn't aware

anything could cross react with the antigen, thus making this test a little

more reliable. Of course, just because I've haven't heard anything that

cross reacts with the antigen, doesn't mean it can't. But Lyme is still,

first and foremost a Clinical Diagnosis. It might help to document your

symptoms, and check out Dr. B's site for a symptom list. If you have trouble

finding it, let me know, I have a copy of it saved in word. Good luck.

Vicki, Md

>From: " L Gehrmann " <airship5@...>

>

>What might cause a person's Lyme Urine ANTIGEN Test (IGeneX)

>to be positive (over 100 ng/mL) (anything over 32 ng/mL is

>considered positive) - while the Lyme Disease ANTIBODIES Test

>() is negative?

>

>The doc says a positive antigen test doesn't necessarily mean a

>person has Lyme Disease. Other conditions, such as autoimmune

>disorders, can cause the Lyme antigen to be elevated.

>

>Can anyone suggest some specific conditions or infections

>(or whatever) that can cause the Lyme antigen test to be positive

>in absence of actual Lyme Disease?

>

>Thanks for any help.

>

>Lynn

[Guest guest]

Hi Lynn,

Welcome to Lyme-aid, I never had a LUAT test done, and don't even know if

they are a valid or reliable test. Many members on this list will certainly

be able to help you there. Perhaps if you fill us in on your Lyme history

we will better be able to help you.

Welcome hugs,

Marta

>From: " L Gehrmann " <airship5@...>

>

>What might cause a person's Lyme Urine ANTIGEN Test (IGeneX)

>to be positive (over 100 ng/mL) (anything over 32 ng/mL is

>considered positive) - while the Lyme Disease ANTIBODIES Test

>() is negative?

>

>The doc says a positive antigen test doesn't necessarily mean a

>person has Lyme Disease. Other conditions, such as autoimmune

>disorders, can cause the Lyme antigen to be elevated.

>

>Can anyone suggest some specific conditions or infections

>(or whatever) that can cause the Lyme antigen test to be positive

>in absence of actual Lyme Disease?

>

>Thanks for any help.

>

>Lynn

[Guest guest]

B56G@... wrote:

>

> From: B56G@...

>

> Hi Lovette

>

> Will you be at the conference in Ct this weekend? I am packing to go now.

> Bev

>

Yes - See you tomorrow nite!

Lovette