Re: Accuracy of bartonella testing?

[Guest guest]

I did the IgeneX test and the western blot and I believe there's an ELISA and all we're inconclusive. According to Eva Sapi at the University of New Haven, and others, the problem is there are a lot more bands (strains) than these tests are looking for. I just went to see Dr. B in CA and did a newer test (just because I want proof) that actually cultures the Lyme that you have. That test was $600. We also did another test however for only $225 that will identify co-infections conclusively and it definitely tests for bartonella and other co-infections. IT's actually a test the vets use and she said that since they have been freely treating for so long, they are YEARS ahead of us in this area. Debbie

-- Accuracy of bartonella testing?

Hi everyone,My son's LLMD is recommending a bartonella blood test, but I'm wondering about its accuracy (or lack therof)? For those who have had a blood test for bartonella (through IgeneX or Fry labs), what was the result? Did you test positive, negative, or was it inconclusive? Thanks! (Gavin's mom)

[Guest guest]

We tested positive via Fry Labs in both manners that they test. They do

a visual test and an antibody test. I can't remember if we used other

labs before them. I chose Fry Labs because I searched the forums and

such, trying to learn which lab was the best. I found that many stated

that choosing a good lab was important because they tested negative at

first, and then subsequent testing showed they had it. I really felt a

strong need to know, so I paid the cash for Fry Labs. But, if your doc

is willing to order testing from Fry Labs even if prior Bartonella

testing comes back negative, it might be worth trying cheaper testing

first that your insurance is willing to pay for upfront. I think my

insurance reimbursed me about half for the Fry Labs testing. At the

time, Fry Labs didn't take insurance, and they might still not. I

haven't checked in a while. Fry Labs had this deal where they tested

for several tickborne infections for a reduced packaged price; plus,

they give you this really cool large glossy picture of your blood with

arrows pointing to the Bartonella.

Love and prayers,

Heidi N

Hi everyone,

My son's LLMD is recommending a bartonella blood test, but I'm wondering

about its accuracy (or lack therof)? For those who have had a blood test

for bartonella (through IgeneX or Fry labs), what was the result? Did

you test positive, negative, or was it inconclusive?

Thanks!

(Gavin's mom)

[Guest guest]

I did this test (the photo) a number of years ago for my son and it came back positive forBLO. What are they calling it these days? Do they have further testing to determine whatit is/was? How is it treated? We never did anything at the time because there was norecommendation on a good treatment option.JSent from my iPad

We tested positive via Fry Labs in both manners that they test. They do

a visual test and an antibody test. I can't remember if we used other

labs before them. I chose Fry Labs because I searched the forums and

such, trying to learn which lab was the best. I found that many stated

that choosing a good lab was important because they tested negative at

first, and then subsequent testing showed they had it. I really felt a

strong need to know, so I paid the cash for Fry Labs. But, if your doc

is willing to order testing from Fry Labs even if prior Bartonella

testing comes back negative, it might be worth trying cheaper testing

first that your insurance is willing to pay for upfront. I think my

insurance reimbursed me about half for the Fry Labs testing. At the

time, Fry Labs didn't take insurance, and they might still not. I

haven't checked in a while. Fry Labs had this deal where they tested

for several tickborne infections for a reduced packaged price; plus,

they give you this really cool large glossy picture of your blood with

arrows pointing to the Bartonella.

Love and prayers,

Heidi N

Hi everyone,

My son's LLMD is recommending a bartonella blood test, but I'm wondering

about its accuracy (or lack therof)? For those who have had a blood test

for bartonella (through IgeneX or Fry labs), what was the result? Did

you test positive, negative, or was it inconclusive?

Thanks!

(Gavin's mom)

[Guest guest]

I was wondering the same as our Dr wants the testing on our son who had an inconclusive Igenex test. He has the full clinical presentation as Im sure he contracted lyme and coninfections congenitally. He is not currently being treated so Im wondering if he needs to be in order to get a positive Fry labs result. Id hate to waste another $500..

Im curious if you did Igenex testing as well Heidi, and if it was pos or not? Also, what other less expensive lab tests would you recommend having first: ELISA? others?

thanks!

To: BorreliaMultipleInfectionsAndAutism Sent: Tue, February 7, 2012 6:07:53 AMSubject: Re: Accuracy of bartonella testing?

We tested positive via Fry Labs in both manners that they test. They do a visual test and an antibody test. I can't remember if we used other labs before them. I chose Fry Labs because I searched the forums and such, trying to learn which lab was the best. I found that many stated that choosing a good lab was important because they tested negative at first, and then subsequent testing showed they had it. I really felt a strong need to know, so I paid the cash for Fry Labs. But, if your doc is willing to order testing from Fry Labs even if prior Bartonella testing comes back negative, it might be worth trying cheaper testing first that your insurance is willing to pay for upfront. I think my insurance reimbursed me about half for the Fry Labs testing. At the time, Fry Labs didn't take insurance, and they might still not. I haven't checked in a while. Fry Labs had this deal where they tested for

several tickborne infections for a reduced packaged price; plus, they give you this really cool large glossy picture of your blood with arrows pointing to the Bartonella.Love and prayers,Heidi NHi everyone,My son's LLMD is recommending a bartonella blood test, but I'm wondering about its accuracy (or lack therof)? For those who have had a blood test for bartonella (through IgeneX or Fry labs), what was the result? Did you test positive, negative, or was it inconclusive?Thanks! (Gavin's mom)

[Guest guest]

Debbie

Could you please share the name of the test.

Accuracy of bartonella testing?

Hi everyone,My son's LLMD is recommending a bartonella blood test, but I'm wondering about its accuracy (or lack therof)? For those who have had a blood test for bartonella (through IgeneX or Fry labs), what was the result? Did you test positive, negative, or was it inconclusive? Thanks! (Gavin's mom)

[Guest guest]

We were negative on basic Igenex, but positive babesia with what I believe was PCR. It was around $1,600.Keena

I was wondering the same as our Dr wants the testing on our son who had an inconclusive Igenex test. He has the full clinical presentation as Im sure he contracted lyme and coninfections congenitally. He is not currently being treated so Im wondering if he needs to be in order to get a positive Fry labs result. Id hate to waste another $500..

Im curious if you did Igenex testing as well Heidi, and if it was pos or not? Also, what other less expensive lab tests would you recommend having first: ELISA? others?

thanks!

To: BorreliaMultipleInfectionsAndAutism Sent: Tue, February 7, 2012 6:07:53 AMSubject: Re: Accuracy of bartonella testing?

We tested positive via Fry Labs in both manners that they test. They do a visual test and an antibody test. I can't remember if we used other labs before them. I chose Fry Labs because I searched the forums and such, trying to learn which lab was the best. I found that many stated that choosing a good lab was important because they tested negative at first, and then subsequent testing showed they had it. I really felt a strong need to know, so I paid the cash for Fry Labs. But, if your doc is willing to order testing from Fry Labs even if prior Bartonella testing comes back negative, it might be worth trying cheaper testing first that your insurance is willing to pay for upfront. I think my insurance reimbursed me about half for the Fry Labs testing. At the time, Fry Labs didn't take insurance, and they might still not. I haven't checked in a while. Fry Labs had this deal where they tested for

several tickborne infections for a reduced packaged price; plus, they give you this really cool large glossy picture of your blood with arrows pointing to the Bartonella.Love and prayers,Heidi NHi everyone,My son's LLMD is recommending a bartonella blood test, but I'm wondering about its accuracy (or lack therof)? For those who have had a blood test for bartonella (through IgeneX or Fry labs), what was the result? Did you test positive, negative, or was it inconclusive?Thanks! (Gavin's mom)

[Guest guest]

I came back positive for it Igenex, daughter came back negative (but has it.)

>

> Hi everyone,

>

> My son's LLMD is recommending a bartonella blood test, but I'm wondering about

its accuracy (or lack therof)? For those who have had a blood test for

bartonella (through IgeneX or Fry labs), what was the result? Did you test

positive, negative, or was it inconclusive?

>

> Thanks!

> (Gavin's mom)

>

[Guest guest]

Could people who are working with a good LLMD email me off-list with recommendations? We are in KY but will travel if we need to. I just want someone who is really good. Thanks - Ruth Sent from my iPhone

We tested positive via Fry Labs in both manners that they test. They do

a visual test and an antibody test. I can't remember if we used other

labs before them. I chose Fry Labs because I searched the forums and

such, trying to learn which lab was the best. I found that many stated

that choosing a good lab was important because they tested negative at

first, and then subsequent testing showed they had it. I really felt a

strong need to know, so I paid the cash for Fry Labs. But, if your doc

is willing to order testing from Fry Labs even if prior Bartonella

testing comes back negative, it might be worth trying cheaper testing

first that your insurance is willing to pay for upfront. I think my

insurance reimbursed me about half for the Fry Labs testing. At the

time, Fry Labs didn't take insurance, and they might still not. I

haven't checked in a while. Fry Labs had this deal where they tested

for several tickborne infections for a reduced packaged price; plus,

they give you this really cool large glossy picture of your blood with

arrows pointing to the Bartonella.

Love and prayers,

Heidi N

Hi everyone,

My son's LLMD is recommending a bartonella blood test, but I'm wondering

about its accuracy (or lack therof)? For those who have had a blood test

for bartonella (through IgeneX or Fry labs), what was the result? Did

you test positive, negative, or was it inconclusive?

Thanks!

(Gavin's mom)

[Guest guest]

I am thinking that BLO meant to say it could be Bartonella or something

similar. Call the lab and ask them. The antibody test is more

specific. I did ask the lab lady if she thought the smear or the

antigen test was better. She said that it appeared to her that people

are slightly more likely to show antibodies, but that some do show only

antibodies or only have BLO in the smear, indicating that testing is

still not always likely to detect Bartonella when it is there.

Love and prayers,

Heidi N

I did this test (the photo) a number of years ago for my son and it came

back positive for

BLO. What are they calling it these days? Do they have further testing

to determine what

it is/was? How is it treated? We never did anything at the time because

there was no

recommendation on a good treatment option.

J

[Guest guest]

I didn't use Igenex for coinfections. I did test positive for

Bartonella and Babesia via Fry. I never did have the famous night

sweats supposedly seen with Babesia, but I did get the air hunger,

which is a freaky feeling that you can't breathe even though you can

(it's not hyperventilation nor a panic attack). I guess the oxygen

is getting to your body, but not your head, and current medical

testing usually just does the finger thing to see if your body is

oxygenated. From the forum posts, it appears that Fry labs is the

favorite for coinfections, and Igenex is the favorite for Lyme.

But, there are some new things going on, with Fry now testing for

Lyme, and some new labs supposedly very accurate. Last time I

checked the Lyme forums, these tests weren't being used enough by

people who post about their results from them, so I can't verify

their accuracy via word-of-mouth. There is one person who has

constantly claimed for years that a particular lab is great (not a

member of this forum), but I don't agree. I have learned to make

sure several people have had success. Often insurance will only pay

for screening types of tests, so you kind of have to just take what

you get. Our screening tests were a waste of time and the

insurance's money. I wish the insurance companies would figure out

that by paying for substandard testing and such, they end up paying

more money in the long run with people ending up being much more ill

from undetected and under-treated conditions.

I have heard differing opinions about ELISA, PCR, Western

Blot, so I don't know. Each doc has their own way of

testing/diagnosing. Picking a good doc is key. I actually only

tested so I could tell my family and others that I have proof that

infections are behind my family's symptoms, so I could persuade them

to believe that infections are a very real problem.

Love and prayers,

Heidi N

I was wondering the same as our Dr wants the testing on our

son who had

an inconclusive Igenex test. He has the full clinical presentation

as Im sure he

contracted lyme and coninfections congenitally. He is not currently

being

treated so Im wondering if he needs to be in order to get a positive

Fry labs

result. Id hate to waste another $500..

Im curious if you did Igenex testing as well Heidi, and if it was

pos or not?

Also, what other less expensive lab tests would you recommend having

first:

ELISA? others?

thanks!

[Guest guest]

BLO refers to Bartonella Like Organism. It seems to be in the general Bartonella family, but not one of the species or strains known to infect humans, for which there are tests. Treating for Bartonella usually helps, though it may require a combination of antibiotics. Anne Mears, RN, MSN/IHmcfighter@... From: BorreliaMultipleInfectionsAndAutism [mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of fight4thekidsSent: Wednesday, February 08, 2012 7:12 AMTo: BorreliaMultipleInfectionsAndAutism Subject: Re: Accuracy of bartonella testing? I am thinking that BLO meant to say it could be Bartonella or something similar. Call the lab and ask them. The antibody test is more specific. I did ask the lab lady if she thought the smear or the antigen test was better. She said that it appeared to her that people are slightly more likely to show antibodies, but that some do show only antibodies or only have BLO in the smear, indicating that testing is still not always likely to detect Bartonella when it is there.Love and prayers,Heidi NI did this test (the photo) a number of years ago for my son and it came back positive forBLO. What are they calling it these days? Do they have further testing to determine whatit is/was? How is it treated? We never did anything at the time because there was norecommendation on a good treatment option.J