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Hi listmates,

Finally took the time to download and read Dr. Burrascano's " Lyme Protocol. "

I'm wondering if anyone here has tried the pulse or combination therapy

(either/or) and how effective it has been. I'm also wondering (maybe

ignorance is bliss here...) if my friend is suffering from the erythema

migrans or possibly the babesiosis (protozoa.) Wondering then if this is

the case, and she is NOT carrying " lyme " or a ba terial (or viral?)parasitic

disease, if she should NOT be doing the couse of antibiotics that she is on

, but instead be on the stuff that's specifically for PROTOZOA. will the

other stuff she takes: Zithro, etc. not " touch " the protozoa. help! What

is being used to " attack " the protozoa? Anyone know?

Thanks!

(not an expert, just a concerned friend.)

Mel

(mom to 4)

Re: [Lyme-aid] Lyme testing

>From: mimianne@...

>

>yes, but the md's say we are all crazy, therefor the crazy xperts must be

>right and we are all crazy, and i am referring to all the crazy people on

>this list, the one's which think they have this crazy lyme disease, big ol'

>crazy bugger thing which has made me CRAZY. Take that BRAIN FOG!! you go

>marta!!!

>

>>From: " J & M McCoy " <mlmccoy@...>

>>

>>Hi ,

>> If you are crazy, then we all are crazy on this list! And we could not

>>all be crazy, so you must not be crazy.....how's that for logic? LOL!

>>Hugs,

>>Marta

>>

>>

>>>From: mimianne@...

>>>

>>>you always make me feel better marta. bring me back my sanity and remind

>>me

>>>that i am not crazy, i am not crazy!!!

>>>

>>

>>

>>------------------------------------------------------------------------

>>With more than 20 million e-mails exchanged daily...

>>

>>...ONElist is home to the liveliest discussions on the Internet!

>>------------------------------------------------------------------------

>>Please send privately messages unrelated to lyme.

>>/archives.cgi/

>>/archives.cgi/Lyme-Docs

>>Email: -subscribeonelist

>>You may substitute " unsubscribe " , " digest " , or " normal " for

>>the word " subscribe " ( " normal " is the opposite of " digest " )

>>

>>

>MimiAnne's Specialty Coffee

> (540) 980-6464

> 93 W. Main Street

> Pulaski, VA 24301

>

>

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  • 3 weeks later...
Guest guest

What is the best testing to have done and what lab to get diag. for Lyme???? I

had told a friend about the new Lyme test coming out and a friend of hers and

her doc want to know whats the best and

most accurate test available now? Would appreciate all input, so I can share

with theml

THANKS! Marcia

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  • 1 month later...
Guest guest

,

Lyme disease is always a clinical diagnosis, that means the disease is

diagnosed on symptoms and your reaction to antibiotic treatment. PCR

testing is no more reliable than a Western Blot or an ELISA blood test. I

had blood PCR testing, was negative, yet I had a known tick bite, bullseye

rash, and was incredibly sick. Even the LUAT is not 100% reliable, but I

understand they do it over a three day period in order to try to get the

best reading. Also, never forget that the lab results are only as good as

the lab technician, and he/she is working hard trying to get as many tests

read in an hour as possible in order to hold on to his job. Please stop

relying on tests, and listen to your body, if you respond to antibiotic

treatment, either by herxing, or improving while on them, you have Lyme

disease.

Hugs,

Marta

-

>From: ne Kieffer <theocean@...>

>

>I don't understand...I tested positive for LUAT and then they used that

>same urine that they did the LUAT for did the PCR test and I tested

>negative for the PCR test?? Does this make sense? Does this mean I am

>negative for Lyme? Which test do I believe the LUAT or the PCR and why

>did one come out neg and the other pos if the same urine sample was

>used???? So confused....

>

>

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In a message dated 6/8/1999 7:37:53 PM Eastern Daylight Time,

mimianne@... writes:

> From: mimianne@...

>

> you always make me feel better marta. bring me back my sanity and remind

me

> that i am not crazy, i am not crazy!!!

>

>

Hello mimianne:

Marta is the best for lifting spirits!!!

And.....YOU ARE NOT CRAZY....YOU JUST HAVE LYME!!!

hugs,

Fransea

NJ Seashore Lymie

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Guest guest

you always make me feel better marta. bring me back my sanity and remind me

that i am not crazy, i am not crazy!!!

>From: " J & M McCoy " <mlmccoy@...>

>

>,

> Lyme disease is always a clinical diagnosis, that means the disease is

>diagnosed on symptoms and your reaction to antibiotic treatment. PCR

>testing is no more reliable than a Western Blot or an ELISA blood test. I

>had blood PCR testing, was negative, yet I had a known tick bite, bullseye

>rash, and was incredibly sick. Even the LUAT is not 100% reliable, but I

>understand they do it over a three day period in order to try to get the

>best reading. Also, never forget that the lab results are only as good as

>the lab technician, and he/she is working hard trying to get as many tests

>read in an hour as possible in order to hold on to his job. Please stop

>relying on tests, and listen to your body, if you respond to antibiotic

>treatment, either by herxing, or improving while on them, you have Lyme

>disease.

>Hugs,

>Marta

>-

>

>>From: ne Kieffer <theocean@...>

>>

>>I don't understand...I tested positive for LUAT and then they used that

>>same urine that they did the LUAT for did the PCR test and I tested

>>negative for the PCR test?? Does this make sense? Does this mean I am

>>negative for Lyme? Which test do I believe the LUAT or the PCR and why

>>did one come out neg and the other pos if the same urine sample was

>>used???? So confused....

>>

>>

>

>

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>

>Deadline is June 19. Join now to win $5000 for your charity of choice.

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>Please send privately messages unrelated to lyme.

>/archives.cgi/

>/archives.cgi/Lyme-Docs

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>You may substitute " unsubscribe " , " digest " , or " normal " for

>the word " subscribe " ( " normal " is the opposite of " digest " )

>

>

MimiAnne's Specialty Coffee

(540) 980-6464

93 W. Main Street

Pulaski, VA 24301

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Guest guest

Hi ,

If you are crazy, then we all are crazy on this list! And we could not

all be crazy, so you must not be crazy.....how's that for logic? LOL!

Hugs,

Marta

>From: mimianne@...

>

>you always make me feel better marta. bring me back my sanity and remind

me

>that i am not crazy, i am not crazy!!!

>

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Guest guest

i don't know. one day i think, i just have rheumatoid arthritis, one day i

think i have lyme! it is so difficult. abx not helping yet! but i really

do think md's make it much worse on us. making us think we are NUTS for

ever even thinking we POSSIBLY have lyme's!

>From: SEAFRAN731@...

>

>In a message dated 6/8/1999 7:37:53 PM Eastern Daylight Time,

>mimianne@... writes:

>

>> From: mimianne@...

>>

>> you always make me feel better marta. bring me back my sanity and remind

>me

>> that i am not crazy, i am not crazy!!!

>>

>>

>Hello mimianne:

>Marta is the best for lifting spirits!!!

>

>And.....YOU ARE NOT CRAZY....YOU JUST HAVE LYME!!!

>

>hugs,

>Fransea

>NJ Seashore Lymie

>

>------------------------------------------------------------------------

>How has ONElist changed your life?

>Share your story with us at

>------------------------------------------------------------------------

>Please send privately messages unrelated to lyme.

>/archives.cgi/

>/archives.cgi/Lyme-Docs

>Email: -subscribeonelist

>You may substitute " unsubscribe " , " digest " , or " normal " for

>the word " subscribe " ( " normal " is the opposite of " digest " )

>

>

MimiAnne's Specialty Coffee

(540) 980-6464

93 W. Main Street

Pulaski, VA 24301

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Guest guest

Mepron, unfortunately. I am taking it now, along with Zithro. It is vile

stuff. Also, not apparently working for me. Everyone else I've known who's

been on this combo for babesia had a kick-ass herx. I'm the *lucky* one who

doesn't herx from anything.

In a message dated 6/9/99 8:02:33 PM Eastern Daylight Time,

bizimom4@... writes:

> What is being used to " attack " the protozoa? Anyone know?

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Guest guest

Hi Mel,

I tried the Pulse therapy and it didn't work for me. But it may have been

my strain of Bb. When I went on Zithromax full time that is when thing got

better.

Connie, MI

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Guest guest

yes, but the md's say we are all crazy, therefor the crazy xperts must be

right and we are all crazy, and i am referring to all the crazy people on

this list, the one's which think they have this crazy lyme disease, big ol'

crazy bugger thing which has made me CRAZY. Take that BRAIN FOG!! you go

marta!!!

>From: " J & M McCoy " <mlmccoy@...>

>

>Hi ,

> If you are crazy, then we all are crazy on this list! And we could not

>all be crazy, so you must not be crazy.....how's that for logic? LOL!

>Hugs,

>Marta

>

>

>>From: mimianne@...

>>

>>you always make me feel better marta. bring me back my sanity and remind

>me

>>that i am not crazy, i am not crazy!!!

>>

>

>

>------------------------------------------------------------------------

>With more than 20 million e-mails exchanged daily...

>

>...ONElist is home to the liveliest discussions on the Internet!

>------------------------------------------------------------------------

>Please send privately messages unrelated to lyme.

>/archives.cgi/

>/archives.cgi/Lyme-Docs

>Email: -subscribeonelist

>You may substitute " unsubscribe " , " digest " , or " normal " for

>the word " subscribe " ( " normal " is the opposite of " digest " )

>

>

MimiAnne's Specialty Coffee

(540) 980-6464

93 W. Main Street

Pulaski, VA 24301

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  • 1 year later...
Guest guest

ann,

lyme testing both blood and urnine testing are still not very accurate ...at

a talk that was held in gettysburg pa the head of a lab that many consider to

be one of the best lyme testing facilities....admitted that the test are only

68% accurate.....LYME DISEASE IS A CLINICAL DIAGNOSES....it is diagnosed thru

symptoms and the discpounting of other possibole causes to those

symptoms.......for more information and a complete symptom list go the

www.lymealliance.org

www.lyme.org

for a site from the testing lab i was talking about go to

www.igenex.com

there is much information on the tests at that site......personally that is

the only lab i would recomend to do the testing.......do not let a doctor

discount that u have lyme due to a negative test though......hang around here

and u will get a lyme education thats for sure...along with caring and

sharing.....

Reid

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I appreciate all the info everyone has sent me about lyme testing.

There is an awful lot of info to digest. Reid, thanks for the lab name.

My doctor uses that lab for allergy testing already, so I am sure he

will be in agreement to use it. Annucia

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  • 5 years later...
Guest guest

>

> Re the Western Blot test, if someone has a positive reaction to

the

> IgM, but a negative result to the IgG, does that person have Lyme

> disease?

------reply ------

heres my interpretation of stuff ive read:

yours is the million dollar question. the medical community is split

on their opinions.

classic teaching in medical school says your tests more likely

represent a " false positive " . llmd's say they have many patients

with histories and symptoms consistent with lymes, who improve with

lymes treatments, but who have test results, that if interpreted in

the classical sense (strict definitions), are negative.

cfsguy

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Another person suggested that this is where Lyme doctors split.

However, even the CDC states that Lyme is a clinical diagnosis.

Going by blood tests alone is not the correct way.

I was IGM positive (CDC and IgeneX criteria) and IGG negative.

However, I had been sick for 8 years already. Many doctors believe

that the IGG can go negative after the disease is chronic and that

the IGM can go up and down depending on the cycles of the disease(s).

In my opinion only - I would disagree with the internist especially

if the other clinical symptoms are present.

I had a rheumatologist look at my blood results (IGM and IGG from

IgeneX), order another kind of test (which was negative) and then

pronounce it all in my head. I am currently being treated for Lyme

by an LLMD (who said I definitely have Lyme and Bartonella) and I'm

getting better.

Check out Burrascano's Guidelines and see how close you come to

meeting the criteria for having Lyme.

Unfortunately, one must really be an advocate for yourself in this

(and many other) disease. I would ask the infectious disease doctor

why he refusing to repeat the test if the lab is suggesting it - that

is, if you would like it repeated.

hang in there,

Robin

>

> Re the Western Blot test, if someone has a positive reaction to the

> IgM, but a negative result to the IgG, does that person have Lyme

> disease?

>

> Also, my Lyme disease Serology showed Reactive. Is this the ELISA

> test?

>

> The infectious disease doctor, who ordered these tests, says it's

> Lyme, but my internist disagrees. He says that I'd also have an

IgG

> if it was Lyme. The lab where the test was done says that the test

> had a low optical band and that it should be repeated, but the

> infectious disease doctor refused to retest. My internist ordered

> some Lyme blood tests for different bands (I don't think that they

> were ELISA or Western blot), but they all came up negative.

>

> These tests was done almost 3 years after I brushed up against some

> Canadian deer.

>

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Guest guest

that really because some Dr. refuse to believe that lyme can cause so much

problem and they have the (I know it all problem ). sorry for your problems.

Bud

listenswithcare <listenswithcare@...> wrote: Another person suggested

that this is where Lyme doctors split.

However, even the CDC states that Lyme is a clinical diagnosis.

Going by blood tests alone is not the correct way.

I was IGM positive (CDC and IgeneX criteria) and IGG negative.

However, I had been sick for 8 years already. Many doctors believe

that the IGG can go negative after the disease is chronic and that

the IGM can go up and down depending on the cycles of the disease(s).

In my opinion only - I would disagree with the internist especially

if the other clinical symptoms are present.

I had a rheumatologist look at my blood results (IGM and IGG from

IgeneX), order another kind of test (which was negative) and then

pronounce it all in my head. I am currently being treated for Lyme

by an LLMD (who said I definitely have Lyme and Bartonella) and I'm

getting better.

Check out Burrascano's Guidelines and see how close you come to

meeting the criteria for having Lyme.

Unfortunately, one must really be an advocate for yourself in this

(and many other) disease. I would ask the infectious disease doctor

why he refusing to repeat the test if the lab is suggesting it - that

is, if you would like it repeated.

hang in there,

Robin

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  • 11 months later...
Guest guest

Would the new lyme disease test come back negative if you are on

steroids? I've been on Prednisone for 10.5 years! I have also been on

doxy for about 10 years. Would that also affect the results of the new

lyme test?

I first got sick in 1990 and after 18 months of being sick, I finally

tested positive (Western Blot) for lyme. I had IV antiobiotics for

about 3 months and then oral for about another year. My joints got

better but not much else. Drs then said I had CFIDS, fibro, and later

UCTD. I've also been told along the way that I have lupus and

Sjogren's. Sometimes I don't know what to believe because my blood work

in the beginning was low positive or borderline with lupus and I do have

many lupus symptoms. For the past fwe years my blood work has been

normal wrt lupus. I would love to know if lyme could still be a

factor. My drs say no but I know that they don't have all the answers.

I would love to get off the prednisone but last time I tried, I passed

out and was told I have secondary adrenal insufficiency. My main

question though is would the new lyme test be accurate if someone is

taking prednisone and also been on doxy for so long.

Thanks!

Carol E from NY

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Guest guest

Carol,

I don't know about the Lymes test but I do take an OTC for adrenals.

There is also a book about adrenal problems and how to get them back in

shape. After I had to big surgeries and lots of emotional stressors I took

it for about a year and I felt so much better. I also take it when I think I

feel I need it now. In the last month I have has MS symptoms and I am using

it to see if its the adrenals instead. If you want more info let me know.

cooky

rheumatic Lyme Testing

Would the new lyme disease test come back negative if you are on

steroids? I've been on Prednisone for 10.5 years! I have also been on

doxy for about 10 years. Would that also affect the results of the new

lyme test?

I first got sick in 1990 and after 18 months of being sick, I finally

tested positive (Western Blot) for lyme. I had IV antiobiotics for

about 3 months and then oral for about another year. My joints got

better but not much else. Drs then said I had CFIDS, fibro, and later

UCTD. I've also been told along the way that I have lupus and

Sjogren's. Sometimes I don't know what to believe because my blood work

in the beginning was low positive or borderline with lupus and I do have

many lupus symptoms. For the past fwe years my blood work has been

normal wrt lupus. I would love to know if lyme could still be a

factor. My drs say no but I know that they don't have all the answers.

I would love to get off the prednisone but last time I tried, I passed

out and was told I have secondary adrenal insufficiency. My main

question though is would the new lyme test be accurate if someone is

taking prednisone and also been on doxy for so long.

Thanks!

Carol E from NY

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Guest guest

>

> Carol,

>

> I don't know about the Lymes test but I do take an OTC for adrenals.

>

> There is also a book about adrenal problems and how to get them

back in

> shape. After I had to big surgeries and lots of emotional stressors

I took

> it for about a year and I felt so much better. I also take it when

I think I

> feel I need it now. In the last month I have has MS symptoms and I

am using

> it to see if its the adrenals instead. If you want more info let me

know.

>

> cooky

>

>

>

> rheumatic Lyme Testing

>

>

> Would the new lyme disease test come back negative if you are on

> steroids? I've been on Prednisone for 10.5 years! I have also been

on

> doxy for about 10 years. Would that also affect the results of the

new

> lyme test?

>

> I first got sick in 1990 and after 18 months of being sick, I

finally

> tested positive (Western Blot) for lyme. I had IV antiobiotics for

> about 3 months and then oral for about another year. My joints got

> better but not much else. Drs then said I had CFIDS, fibro, and

later

> UCTD. I've also been told along the way that I have lupus and

> Sjogren's. Sometimes I don't know what to believe because my blood

work

> in the beginning was low positive or borderline with lupus and I do

have

> many lupus symptoms. For the past fwe years my blood work has been

> normal wrt lupus. I would love to know if lyme could still be a

> factor. My drs say no but I know that they don't have all the

answers.

> I would love to get off the prednisone but last time I tried, I

passed

> out and was told I have secondary adrenal insufficiency. My main

> question though is would the new lyme test be accurate if someone is

> taking prednisone and also been on doxy for so long.

> Thanks!

> Carol E from NY

>

>

>

>

>

>

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Guest guest

>

> Carol,

>

> I don't know about the Lymes test but I do take an OTC for adrenals.

>

> There is also a book about adrenal problems and how to get them

back in

> shape. After I had to big surgeries and lots of emotional stressors

I took

> it for about a year and I felt so much better. I also take it when

I think I

> feel I need it now. In the last month I have has MS symptoms and I

am using

> it to see if its the adrenals instead. If you want more info let me

know.

>

> cooky

>

>

>

> rheumatic Lyme Testing

>

>

> Would the new lyme disease test come back negative if you are on

> steroids? I've been on Prednisone for 10.5 years! I have also been

on

> doxy for about 10 years. Would that also affect the results of the

new

> lyme test?

>

> I first got sick in 1990 and after 18 months of being sick, I

finally

> tested positive (Western Blot) for lyme. I had IV antiobiotics for

> about 3 months and then oral for about another year. My joints got

> better but not much else. Drs then said I had CFIDS, fibro, and

later

> UCTD. I've also been told along the way that I have lupus and

> Sjogren's. Sometimes I don't know what to believe because my blood

work

> in the beginning was low positive or borderline with lupus and I do

have

> many lupus symptoms. For the past fwe years my blood work has been

> normal wrt lupus. I would love to know if lyme could still be a

> factor. My drs say no but I know that they don't have all the

answers.

> I would love to get off the prednisone but last time I tried, I

passed

> out and was told I have secondary adrenal insufficiency. My main

> question though is would the new lyme test be accurate if someone is

> taking prednisone and also been on doxy for so long.

> Thanks!

> Carol E from NY

>

>

>

>

>

>

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Guest guest

Cooky, Adrenal insufficiency is unfortunately common in most of us

with Immune dysfunction. I also take a product from an ND that has

helped with the adrenal fatigue. I'm still fatigued but not as bad.

Other areas of the endocrine system need to be addressed in most of

us. As the Pituitary which is the main brain for our endocrine

(hormone) system is to sick to send out the message to the other

systems to produce the needed hormones. Therefore, many of us are

defficient in Thyroid hormone. We usually suffer inability to convert

T-4 into T3 but some of us have auto Immune Thyroiditis. Estrogen and

Testostrone Imbalance and the Mitochrondial is lacking the ability to

produce ATP which is the energy source in the CREBS cycle that gives

us energy. therefore, many of us are tired for a very good reason.

Carol

>

> Carol,

>

> I don't know about the Lymes test but I do take an OTC for adrenals.

>

> There is also a book about adrenal problems and how to get them

back in

> shape. After I had to big surgeries and lots of emotional stressors

I took

> it for about a year and I felt so much better. I also take it when

I think I

> feel I need it now. In the last month I have has MS symptoms and I

am using

> it to see if its the adrenals instead. If you want more info let me

know.

>

> cooky

>

>

>

> rheumatic Lyme Testing

>

>

> Would the new lyme disease test come back negative if you are on

> steroids? I've been on Prednisone for 10.5 years! I have also been

on

> doxy for about 10 years. Would that also affect the results of the

new

> lyme test?

>

> I first got sick in 1990 and after 18 months of being sick, I

finally

> tested positive (Western Blot) for lyme. I had IV antiobiotics for

> about 3 months and then oral for about another year. My joints got

> better but not much else. Drs then said I had CFIDS, fibro, and

later

> UCTD. I've also been told along the way that I have lupus and

> Sjogren's. Sometimes I don't know what to believe because my blood

work

> in the beginning was low positive or borderline with lupus and I do

have

> many lupus symptoms. For the past fwe years my blood work has been

> normal wrt lupus. I would love to know if lyme could still be a

> factor. My drs say no but I know that they don't have all the

answers.

> I would love to get off the prednisone but last time I tried, I

passed

> out and was told I have secondary adrenal insufficiency. My main

> question though is would the new lyme test be accurate if someone is

> taking prednisone and also been on doxy for so long.

> Thanks!

> Carol E from NY

>

>

>

>

>

>

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Guest guest

Carol E from NY, Steroid use can lower the ability to produce

antibody but it doesn't always effect the ability to get a positive

on an ANTIGEN test, as you are looking fo rthe organism itself andnot

the body's ability to produce antibody. The steroids do put the

Spirochete that causes Lyme into the Cyst stage but the Flo cytometer

used by Central Florida Research is supposed to pick up the various

plemorphic stages of the organism. It could affect the test due to

the long term treatment with the steroids but if you are still

symptomatic, your chances are much better with this test than any

other. Carol

>

> Would the new lyme disease test come back negative if you are on

> steroids? I've been on Prednisone for 10.5 years! I have also

been on

> doxy for about 10 years. Would that also affect the results of the

new

> lyme test?

>

> I first got sick in 1990 and after 18 months of being sick, I

finally

> tested positive (Western Blot) for lyme. I had IV antiobiotics for

> about 3 months and then oral for about another year. My joints got

> better but not much else. Drs then said I had CFIDS, fibro, and

later

> UCTD. I've also been told along the way that I have lupus and

> Sjogren's. Sometimes I don't know what to believe because my blood

work

> in the beginning was low positive or borderline with lupus and I do

have

> many lupus symptoms. For the past fwe years my blood work has been

> normal wrt lupus. I would love to know if lyme could still be a

> factor. My drs say no but I know that they don't have all the

answers.

> I would love to get off the prednisone but last time I tried, I

passed

> out and was told I have secondary adrenal insufficiency. My main

> question though is would the new lyme test be accurate if someone

is

> taking prednisone and also been on doxy for so long.

> Thanks!

> Carol E from NY

>

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  • 1 year later...

Has anyone had this particular test run?

Kenda

> Anne

> There is a new web site www.mylymelab.com that is very informative

> and they will have a forum up soon that will deal with tests. If you go

> to the site the testing page will have good information for you. Hope

> this will be of soom help.

>

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Kenda

I was told about this site by a friend four weeks ago. I went to

the site and read every page. Before I did not have a very good

understanding between an antiboty or antigen test or how they worked.

Such as the effects of antibiotics on tests. By the information I

learned from the site I was able to make an informed desision on what

test to do. I had the CFR's antigen test done. I think it is the best

test there is at this time, being able to track your treatment to see

if it is working is just one of the things that sold me on the test. I

called the lad and talked to a man named Tom before I had the test

done. He will talk to you about the test. The # is (863-287-8163)

Mention the site to him.

Hope this helps you

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