Re: New to the group - positive Borrelia culture

[Guest guest]

In my opinion, it is the best around, since it looks for the organism instead of just looking for the immune response. Anne Mears, RN, MSN/IHmcfighter@... From: BorreliaMultipleInfectionsAndAutism [mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of mygrosnerSent: Tuesday, July 31, 2012 10:04 PMTo: BorreliaMultipleInfectionsAndAutism Subject: New to the group - positive Borrelia culture Hi everyone,I'm relatively new to the group (been a member for awhile but never posted until now). I have almost 7 year old who is seemingly becoming more autistic each year despite all treatments so far so I began the process of ruling things out. Lyme was big on my list since it seemed he wasn't responding to things we felt he should have.Our LLMD, Dr. B in Southern California, ran a series of test and he came back positive for the Borrelia Culture from Advanced Labs. The other PCR tests were negative though. Dr. B said this was definitely Lyme. My other DAN doctor is very skeptical of this lab. However, I've read from other Lyme groups that this new Borrelia culture could be considered the new " gold " standard for testing Lyme due to its accuracy.Well, Dr. B said in addition to cooling down his GI system with natural anti-inflammatories, she wanted to start my son on Cholestyramine before moving onto Alinia.I've read many posts about Cholestyramine and they generally seem positive (I was kind of nervous when she said it was a chelating agent for biotoxins!).Do you guys feels the Advanced Labs culture test is a good valid test? I'd love for my DAN doctor to be on the same page as us by reducing his skepticism.Thanks so much!nne

[Guest guest]

Thanks for your reply Anne! I'm hoping to get a copy of the images of those

nasty little spirochetes so I can show my DAN doctor...I'm just wondering if

there's any information/documentation out there that may also be convincing to

show him also.

nne

>

> In my opinion, it is the best around, since it looks for the organism

> instead of just looking for the immune response.

>

>

>

> Anne Mears, RN, MSN/IH

>

> mcfighter@...

>

>

>

> From: BorreliaMultipleInfectionsAndAutism

> [mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of

> mygrosner

> Sent: Tuesday, July 31, 2012 10:04 PM

> To: BorreliaMultipleInfectionsAndAutism

> Subject: New to the group - positive

> Borrelia culture

>

>

>

>

>

> Hi everyone,

> I'm relatively new to the group (been a member for awhile but never posted

> until now). I have almost 7 year old who is seemingly becoming more autistic

> each year despite all treatments so far so I began the process of ruling

> things out. Lyme was big on my list since it seemed he wasn't responding to

> things we felt he should have.

>

> Our LLMD, Dr. B in Southern California, ran a series of test and he came

> back positive for the Borrelia Culture from Advanced Labs. The other PCR

> tests were negative though. Dr. B said this was definitely Lyme. My other

> DAN doctor is very skeptical of this lab. However, I've read from other Lyme

> groups that this new Borrelia culture could be considered the new " gold "

> standard for testing Lyme due to its accuracy.

>

> Well, Dr. B said in addition to cooling down his GI system with natural

> anti-inflammatories, she wanted to start my son on Cholestyramine before

> moving onto Alinia.

>

> I've read many posts about Cholestyramine and they generally seem positive

> (I was kind of nervous when she said it was a chelating agent for

> biotoxins!).

>

> Do you guys feels the Advanced Labs culture test is a good valid test? I'd

> love for my DAN doctor to be on the same page as us by reducing his

> skepticism.

>

> Thanks so much!

> nne

>

[Guest guest]

Just in case he is concerned about lab contamination, I have heard from Dr. B in NY (who works closely with this lab to develop the culture), that they are finding many different strains of Bb bacteria. This would not happen if it were lab contamination. If contamination occurred, all cultures would have the same strain. Nothing has been published as yet, but they are working on at least one study to be published. It just takes time to get the research done, then get it written and past peer-review. Anne Mears, RN, MSN/IHmcfighter@... From: BorreliaMultipleInfectionsAndAutism [mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of mygrosnerSent: Wednesday, August 01, 2012 9:14 AMTo: BorreliaMultipleInfectionsAndAutism Subject: Re: New to the group - positive Borrelia culture Thanks for your reply Anne! I'm hoping to get a copy of the images of those nasty little spirochetes so I can show my DAN doctor...I'm just wondering if there's any information/documentation out there that may also be convincing to show him also.nne>> In my opinion, it is the best around, since it looks for the organism> instead of just looking for the immune response.> > > > Anne Mears, RN, MSN/IH> > mcfighter@...> > > > From: BorreliaMultipleInfectionsAndAutism > [mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of> mygrosner> Sent: Tuesday, July 31, 2012 10:04 PM> To: BorreliaMultipleInfectionsAndAutism > Subject: New to the group - positive> Borrelia culture> > > > > > Hi everyone,> I'm relatively new to the group (been a member for awhile but never posted> until now). I have almost 7 year old who is seemingly becoming more autistic> each year despite all treatments so far so I began the process of ruling> things out. Lyme was big on my list since it seemed he wasn't responding to> things we felt he should have.> > Our LLMD, Dr. B in Southern California, ran a series of test and he came> back positive for the Borrelia Culture from Advanced Labs. The other PCR> tests were negative though. Dr. B said this was definitely Lyme. My other> DAN doctor is very skeptical of this lab. However, I've read from other Lyme> groups that this new Borrelia culture could be considered the new " gold " > standard for testing Lyme due to its accuracy.> > Well, Dr. B said in addition to cooling down his GI system with natural> anti-inflammatories, she wanted to start my son on Cholestyramine before> moving onto Alinia.> > I've read many posts about Cholestyramine and they generally seem positive> (I was kind of nervous when she said it was a chelating agent for> biotoxins!).> > Do you guys feels the Advanced Labs culture test is a good valid test? I'd> love for my DAN doctor to be on the same page as us by reducing his> skepticism.> > Thanks so much!> nne>

[Guest guest]

We also used Advanced Labs and got a positive borrelia culture. My son (severe apraxia) is almost 4. I am wondering if I should test myself and my younger daughter as well. We have all tested negative on all other lyme tests but my son's borrelia culture came back positive. He has never had a bite, rash or any other signs of lyme that we know of (he is essentially nonverbal). I really hope this test is correct!!! We just started treating with biaxin.

Just in case he is concerned about lab contamination, I have heard from Dr. B in NY (who works closely with this lab to develop the culture), that they are finding many different strains of Bb bacteria. This would not happen if it were lab contamination. If contamination occurred, all cultures would have the same strain. Nothing has been published as yet, but they are working on at least one study to be published. It just takes time to get the research done, then get it written and past peer-review. Anne Mears, RN, MSN/IHmcfighter@... From: BorreliaMultipleInfectionsAndAutism [mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of mygrosnerSent: Wednesday, August 01, 2012 9:14 AMTo: BorreliaMultipleInfectionsAndAutism Subject: Re: New to the group - positive Borrelia culture Thanks for your reply Anne! I'm hoping to get a copy of the images of those nasty little spirochetes so I can show my DAN doctor...I'm just wondering if there's any information/documentation out there that may also be convincing to show him also.nne>> In my opinion, it is the best around, since it looks for the organism> instead of just looking for the immune response.> > > > Anne Mears, RN, MSN/IH> > mcfighter@...> > > > From: BorreliaMultipleInfectionsAndAutism > [mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of> mygrosner> Sent: Tuesday, July 31, 2012 10:04 PM> To: BorreliaMultipleInfectionsAndAutism > Subject: New to the group - positive> Borrelia culture> > > > > > Hi everyone,> I'm relatively new to the group (been a member for awhile but never posted> until now). I have almost 7 year old who is seemingly becoming more autistic> each year despite all treatments so far so I began the process of ruling> things out. Lyme was big on my list since it seemed he wasn't responding to> things we felt he should have.> > Our LLMD, Dr. B in Southern California, ran a series of test and he came> back positive for the Borrelia Culture from Advanced Labs. The other PCR> tests were negative though. Dr. B said this was definitely Lyme. My other> DAN doctor is very skeptical of this lab. However, I've read from other Lyme> groups that this new Borrelia culture could be considered the new "gold"> standard for testing Lyme due to its accuracy.> > Well, Dr. B said in addition to cooling down his GI system with natural> anti-inflammatories, she wanted to start my son on Cholestyramine before> moving onto Alinia.> > I've read many posts about Cholestyramine and they generally seem positive> (I was kind of nervous when she said it was a chelating agent for> biotoxins!).> > Do you guys feels the Advanced Labs culture test is a good valid test? I'd> love for my DAN doctor to be on the same page as us by reducing his> skepticism.> > Thanks so much!> nne>

[Guest guest]

nne

My Dermatologist has advanced Lyme's and has been to multiple doctors across the USA. I just saw him last week and the Borrelia Culture is definetly the gold standard now for testing for Lyme's superior to anything else in his opinion. There is also a Bartonella culture that is also very accurate. Both of these are very expensive tests. I believe he said $600 each.

New to the group - positive Borrelia culture

Hi everyone,I'm relatively new to the group (been a member for awhile but never posted until now). I have almost 7 year old who is seemingly becoming more autistic each year despite all treatments so far so I began the process of ruling things out. Lyme was big on my list since it seemed he wasn't responding to things we felt he should have.Our LLMD, Dr. B in Southern California, ran a series of test and he came back positive for the Borrelia Culture from Advanced Labs. The other PCR tests were negative though. Dr. B said this was definitely Lyme. My other DAN doctor is very skeptical of this lab. However, I've read from other Lyme groups that this new Borrelia culture could be considered the new "gold" standard for testing Lyme due to its accuracy.Well, Dr. B said in addition to cooling down his GI system with natural anti-inflammatories, she wanted to start my son on Cholestyramine before moving onto Alinia.I've read many posts about Cholestyramine and they generally seem positive (I was kind of nervous when she said it was a chelating agent for biotoxins!).Do you guys feels the Advanced Labs culture test is a good valid test? I'd love for my DAN doctor to be on the same page as us by reducing his skepticism.Thanks so much!nne