Re: Diagnosing congenital Lyme

[Guest guest]

Have you thought of giving her an antibiotic " challenge " -- then retesting? I

don't know why not to do Igenex test -- they could do the bloodtest (with more

determinative bands) and a PCR teset, which is how I was ultimately diagnosed.

Look for a Great article about Barbara Corson by betterhealthguy.com -- this

article is what led me to go back through all of my daughters' medical records

from birth and conclude that they had a ton of symptoms that all pointed to Lyme

-- thus that they probably were congenital -- thus leading to me and my husband

being tested and coming out positive.

Also, Lyme could have caused her to be a preemie.

Natasha

________________________________

From: margaret_behrns <spamneggs@...>

Sent: Thu, October 7, 2010 5:04:48 AM

Subject: [ ] Diagnosing congenital Lyme

For those of you who have kids with congenital Lyme, can you please share the

best diagnostic test to get? I suspect Lyme in my 4 year old but she's tested

negative twice on the Western Blot (but band 41 is reactive same as my first

" negative test. " We saw a LLMD in Vienna and he ran the proxy tests CD57 and C4a

and they do not indicate Lyme infection. He said not to bother with the IGenex

Western Blot or any other antibody test and instead he came up with about 5

different tests that we should do (since no one test is definitive) to the tune

of $1,200 which we just can't do. It is so frustrating that there isn't a good

test to help us know whether this bacteria is affecting my daughter. Any advice?

We've realized that a ton of her symptoms were caused by yeast and working on

that has helped a lot, and she has just been diagnosed with pancreatic

dysfunction (enyzyme are blocked or not being produced) but no cause has been

identified (ruled out Cystic Fibrosis). She's a former preemie so it is hard to

differntiate what caused what, but I suspect I've had Lyme for 20 years and

could very well have passed it along.

[Guest guest]

My 3 year old was born healthy though a few weird things happened after his

birth such as slow growth rate and head size. He has woken up once a month with

leg pain since he was born. Last week he crawled in my lap whining that his

fingers hurt. I have an appt. next week to get his bloodwork done. I

contracted Lyme possibly right before or during my pregnancy with him and didn't

know I had it until last year. I'm not sure if I'm overreacting but after

reading so many heart breaking stories I decided I didn't want to wait until he

has more symptoms.

* ´¨) ¸.• ´¸.•* ´¨)¸. •*¨)

(¸.•´ (¸ ;. •´ Tricia

________________________________

From: Natasha Moiseyev <nmoiseyev@...>

Sent: Thu, October 7, 2010 4:14:12 PM

Subject: Re: [ ] Diagnosing congenital Lyme

Have you thought of giving her an antibiotic " challenge " -- then retesting? I

don't know why not to do Igenex test -- they could do the bloodtest (with more

determinative bands) and a PCR teset, which is how I was ultimately diagnosed.

Look for a Great article about Barbara Corson by betterhealthguy.com -- this

article is what led me to go back through all of my daughters' medical records

from birth and conclude that they had a ton of symptoms that all pointed to Lyme

-- thus that they probably were congenital -- thus leading to me and my husband

being tested and coming out positive.

Also, Lyme could have caused her to be a preemie.

Natasha

________________________________

From: margaret_behrns <spamneggs@...>

Sent: Thu, October 7, 2010 5:04:48 AM

Subject: [ ] Diagnosing congenital Lyme

For those of you who have kids with congenital Lyme, can you please share the

best diagnostic test to get? I suspect Lyme in my 4 year old but she's tested

negative twice on the Western Blot (but band 41 is reactive same as my first

" negative test. " We saw a LLMD in Vienna and he ran the proxy tests CD57 and C4a

and they do not indicate Lyme infection. He said not to bother with the IGenex

Western Blot or any other antibody test and instead he came up with about 5

different tests that we should do (since no one test is definitive) to the tune

of $1,200 which we just can't do. It is so frustrating that there isn't a good

test to help us know whether this bacteria is affecting my daughter. Any advice?

We've realized that a ton of her symptoms were caused by yeast and working on

that has helped a lot, and she has just been diagnosed with pancreatic

dysfunction (enyzyme are blocked or not being produced) but no cause has been

identified (ruled out Cystic Fibrosis). She's a former preemie so it is hard to

differntiate what caused what, but I suspect I've had Lyme for 20 years and

could very well have passed it along.

[Guest guest]

Tricia -

Definitely the right move. And be sure they give you the results so you can see

if there is ANY

sign of Lyme in the test. And I strongly recommend you get the Igenex Western

Blot because of the number of Lyme-specific bands they test for -- far more than

the typical one. If he still comes out negative, keep track of every little

symptom and ask the doctor about them as they come up. It is not normal for a

child to have growing pains, actually, and certainly not for their fingers to

hurt at that age (unless smashed in doors, under people's feet, etc. ;0))

Will be thinking of you and your son in particular in the coming weeks

Natasha

________________________________

From: Tricia Soderstrom <TriciaSod@...>

Sent: Thu, October 7, 2010 2:08:10 PM

Subject: Re: [ ] Diagnosing congenital Lyme

My 3 year old was born healthy though a few weird things happened after his

birth such as slow growth rate and head size. He has woken up once a month with

leg pain since he was born. Last week he crawled in my lap whining that his

fingers hurt. I have an appt. next week to get his bloodwork done. I

contracted Lyme possibly right before or during my pregnancy with him and didn't

know I had it until last year. I'm not sure if I'm overreacting but after

reading so many heart breaking stories I decided I didn't want to wait until he

has more symptoms.

* ´¨) ¸.• ´¸.•* ´¨)¸. •*¨)

(¸.•´ (¸ ;. •´ Tricia

________________________________

From: Natasha Moiseyev <nmoiseyev@...>

Sent: Thu, October 7, 2010 4:14:12 PM

Subject: Re: [ ] Diagnosing congenital Lyme

Have you thought of giving her an antibiotic " challenge " -- then retesting? I

don't know why not to do Igenex test -- they could do the bloodtest (with more

determinative bands) and a PCR teset, which is how I was ultimately diagnosed.

Look for a Great article about Barbara Corson by betterhealthguy.com -- this

article is what led me to go back through all of my daughters' medical records

from birth and conclude that they had a ton of symptoms that all pointed to Lyme

-- thus that they probably were congenital -- thus leading to me and my husband

being tested and coming out positive.

Also, Lyme could have caused her to be a preemie.

Natasha

________________________________

From: margaret_behrns <spamneggs@...>

Sent: Thu, October 7, 2010 5:04:48 AM

Subject: [ ] Diagnosing congenital Lyme

For those of you who have kids with congenital Lyme, can you please share the

best diagnostic test to get? I suspect Lyme in my 4 year old but she's tested

negative twice on the Western Blot (but band 41 is reactive same as my first

" negative test. " We saw a LLMD in Vienna and he ran the proxy tests CD57 and C4a

and they do not indicate Lyme infection. He said not to bother with the IGenex

Western Blot or any other antibody test and instead he came up with about 5

different tests that we should do (since no one test is definitive) to the tune

of $1,200 which we just can't do. It is so frustrating that there isn't a good

test to help us know whether this bacteria is affecting my daughter. Any advice?

We've realized that a ton of her symptoms were caused by yeast and working on

that has helped a lot, and she has just been diagnosed with pancreatic

dysfunction (enyzyme are blocked or not being produced) but no cause has been

identified (ruled out Cystic Fibrosis). She's a former preemie so it is hard to

differntiate what caused what, but I suspect I've had Lyme for 20 years and

could very well have passed it along.

[Guest guest]

I was born with Lymes (also a preemie), so was my sister and I passed

it to my son. I'n my opinion.... not a doctor, but.... If you

really have it, ask yourself how can you NOT pass it to your baby??

It's in your blood, your tears, your breastmilk, your sweat, your

urine, etc. I was in the middle of my treatment when I got pregnant

with my daughter. Dr. J told me that the only way to keep it from

your fetus is to stay on antibiotics the whole pregnancy to keep your

blood clean until you deliver. I did that and she was negative at

birth! So there's your doctor's opinion, and he's the best doctor in

the country. And me as a research study to help verify it.

However, at the time my 8 year old son's first test was equivocal. So

we did the antibiotic challenge. I think it consists of 6 weeks of

doxy. If they have it you will know after 3 weeks. My son's first

symptom was that he came to me balling crying and I ran to him to see

what happened and he simply said, " I have no idea why I'm crying and

I can't stop. " He continued to be very emotional for months which

was totally not like him at ALL. We had to change our discipline with

him to very low key. He acted a little bipolar I would say and was

totally happy and normal before this trial with doxy. He became very

hard on himself. Also, he had the " permanent kind " of hearing loss and

occasionally he complained of his joints.

Then one day about 6 or 8 months into treatment his symptoms were

totally gone except the stomach pains the antibiotics were causing.

The miraculous cure... his " permanent hearing loss " was cured! The

ENT I was taking him to that thought Lymes was ridiculous was so

stumped. I laughed at him, he was not happy. His diagnosis...

" sometimes things like that just happen. " Ha, right.

Just know this. If you do the antibiotic challenge, there is no going

back. You will have to continue to treat her at that point because

you have stirred up the Lymes and if you stop treatment you will be

making it worse. So if she starts showing more symptoms you will have

your answer. If you want to test at that point for a paper answer

that's fine. But if it comes out negative again, know that she might

still have it and probably does if you had it pregnant. Not to mention

what symptoms tell you. And remember, her symptoms don't have to be

really bad like some you read about. Some people are Asymptomatic

carriers. And it's TONS better to treat as a child then to wait until

she's had it for 15 or 20 years and then try to treat it with worse

symptoms. Children have a stronger immune system and recover and

handle treatment better than adults.

Suzanne

On Oct 7, 2010, at 7:04 AM, margaret_behrns wrote:

> For those of you who have kids with congenital Lyme, can you please

> share the best diagnostic test to get? I suspect Lyme in my 4 year

> old but she's tested negative twice on the Western Blot (but band 41

> is reactive same as my first " negative test. " We saw a LLMD in

> Vienna and he ran the proxy tests CD57 and C4a and they do not

> indicate Lyme infection. He said not to bother with the IGenex

> Western Blot or any other antibody test and instead he came up with

> about 5 different tests that we should do (since no one test is

> definitive) to the tune of $1,200 which we just can't do. It is so

> frustrating that there isn't a good test to help us know whether

> this bacteria is affecting my daughter. Any advice? We've realized

> that a ton of her symptoms were caused by yeast and working on that

> has helped a lot, and she has just been diagnosed with pancreatic

> dysfunction (enyzyme are blocked or not being produced) but no cause

> has been identified (ruled out Cystic Fibrosis). She's a former

> preemie so it is hard to differntiate what caused what, but I

> suspect I've had Lyme for 20 years and could very well have passed

> it along.

>

>

>

[Guest guest]

Tricia,

Smart move on your part. My kids were originally diagnosed with CFS, for

years!! My son had been sick about 2 years when my then 3 year old

began having symptoms. Just like your little ones. It broke my heart and

I didn't know if I could go through having another sick child, but I

did. Sadly for her it took another 10 years to get the Lyme dx and start

proper treatment. If only I had known...

You are not over reacting, and I am certain you are scared wondering how

you will cope if it is Lyme, but you will. And this group will be there

when needed.

Hugs,

Z

On 10/7/2010 5:08 PM, Tricia Soderstrom wrote:

>

> My 3 year old was born healthy though a few weird things happened

> after his

> birth such as slow growth rate and head size. He has woken up once a

> month with

> leg pain since he was born. Last week he crawled in my lap whining

> that his

> fingers hurt. I have an appt. next week to get his bloodwork done. I

> contracted Lyme possibly right before or during my pregnancy with him

> and didn't

> know I had it until last year. I'm not sure if I'm overreacting but after

> reading so many heart breaking stories I decided I didn't want to wait

> until he

> has more symptoms.

>

> * ´¨) ¸.• ´¸.•* ´¨)¸. •*¨)

> (¸.•´ (¸ ;. •´ Tricia

>

>

[Guest guest]

I agree. The reason some doctors don't like IGNEX is because the

Infectious Disease naysayers ran some medical articles a few years ago

stating that IGNEX was " over-diagnosing Lymes " and they didn't know

what they were doing. In fact, IGNEX is the country's leading tick

born illness diagnostic lab in the country and the reason they get a

lot of Lyme's tests is because that is where almost all of the Lyme

Specialists send their blood!

Suzanne

On Oct 7, 2010, at 4:45 PM, Natasha Moiseyev wrote:

> Tricia -

>

> Definitely the right move. And be sure they give you the results so

> you can see

> if there is ANY

> sign of Lyme in the test. And I strongly recommend you get the

> Igenex Western

> Blot because of the number of Lyme-specific bands they test for --

> far more than

> the typical one. If he still comes out negative, keep track of every

> little

> symptom and ask the doctor about them as they come up. It is not

> normal for a

> child to have growing pains, actually, and certainly not for their

> fingers to

> hurt at that age (unless smashed in doors, under people's feet,

> etc. ;0))

>

> Will be thinking of you and your son in particular in the coming weeks

>

> Natasha

>

> ________________________________

> From: Tricia Soderstrom <TriciaSod@...>

>

> Sent: Thu, October 7, 2010 2:08:10 PM

> Subject: Re: [ ] Diagnosing congenital Lyme

>

> My 3 year old was born healthy though a few weird things happened

> after his

> birth such as slow growth rate and head size. He has woken up once a

> month with

>

> leg pain since he was born. Last week he crawled in my lap whining

> that his

> fingers hurt. I have an appt. next week to get his bloodwork done. I

> contracted Lyme possibly right before or during my pregnancy with

> him and didn't

>

> know I had it until last year. I'm not sure if I'm overreacting but

> after

> reading so many heart breaking stories I decided I didn't want to

> wait until he

> has more symptoms.

>

> * ´¨) ¸.• ´¸.•* ´¨)¸. •*¨)

> (¸.•´ (¸ ;. •´ Tricia

>

> ________________________________

> From: Natasha Moiseyev <nmoiseyev@...>

>

> Sent: Thu, October 7, 2010 4:14:12 PM

> Subject: Re: [ ] Diagnosing congenital Lyme

>

> Have you thought of giving her an antibiotic " challenge " -- then

> retesting? I

> don't know why not to do Igenex test -- they could do the bloodtest

> (with more

> determinative bands) and a PCR teset, which is how I was ultimately

> diagnosed.

>

> Look for a Great article about Barbara Corson by betterhealthguy.com

> -- this

> article is what led me to go back through all of my daughters'

> medical records

> from birth and conclude that they had a ton of symptoms that all

> pointed to Lyme

>

> -- thus that they probably were congenital -- thus leading to me and

> my husband

> being tested and coming out positive.

>

> Also, Lyme could have caused her to be a preemie.

>

> Natasha

>

> ________________________________

> From: margaret_behrns <spamneggs@...>

>

> Sent: Thu, October 7, 2010 5:04:48 AM

> Subject: [ ] Diagnosing congenital Lyme

>

> For those of you who have kids with congenital Lyme, can you please

> share the

> best diagnostic test to get? I suspect Lyme in my 4 year old but

> she's tested

> negative twice on the Western Blot (but band 41 is reactive same as

> my first

> " negative test. " We saw a LLMD in Vienna and he ran the proxy tests

> CD57 and C4a

>

> and they do not indicate Lyme infection. He said not to bother with

> the IGenex

> Western Blot or any other antibody test and instead he came up with

> about 5

> different tests that we should do (since no one test is definitive)

> to the tune

> of $1,200 which we just can't do. It is so frustrating that there

> isn't a good

> test to help us know whether this bacteria is affecting my daughter.

> Any advice?

>

> We've realized that a ton of her symptoms were caused by yeast and

> working on

> that has helped a lot, and she has just been diagnosed with pancreatic

> dysfunction (enyzyme are blocked or not being produced) but no cause

> has been

> identified (ruled out Cystic Fibrosis). She's a former preemie so it

> is hard to

> differntiate what caused what, but I suspect I've had Lyme for 20

> years and

> could very well have passed it along.

>

>

[Guest guest]

And I would add that, importantly, they have to do lab certification and

recertification procedures just like any other lab and the government keeps

recertifying them, whatever the IDSA naysayers say.

Natasha

________________________________

From: Suzanne <suzlwilliams@...>

Sent: Thu, October 7, 2010 3:26:58 PM

Subject: Re: [ ] Diagnosing congenital Lyme

I agree. The reason some doctors don't like IGNEX is because the

Infectious Disease naysayers ran some medical articles a few years ago

stating that IGNEX was " over-diagnosing Lymes " and they didn't know

what they were doing. In fact, IGNEX is the country's leading tick

born illness diagnostic lab in the country and the reason they get a

lot of Lyme's tests is because that is where almost all of the Lyme

Specialists send their blood!

Suzanne

On Oct 7, 2010, at 4:45 PM, Natasha Moiseyev wrote:

> Tricia -

>

> Definitely the right move. And be sure they give you the results so

> you can see

> if there is ANY

> sign of Lyme in the test. And I strongly recommend you get the

> Igenex Western

> Blot because of the number of Lyme-specific bands they test for --

> far more than

> the typical one. If he still comes out negative, keep track of every

> little

> symptom and ask the doctor about them as they come up. It is not

> normal for a

> child to have growing pains, actually, and certainly not for their

> fingers to

> hurt at that age (unless smashed in doors, under people's feet,

> etc. ;0))

>

> Will be thinking of you and your son in particular in the coming weeks

>

> Natasha

>

> ________________________________

> From: Tricia Soderstrom <TriciaSod@...>

>

> Sent: Thu, October 7, 2010 2:08:10 PM

> Subject: Re: [ ] Diagnosing congenital Lyme

>

> My 3 year old was born healthy though a few weird things happened

> after his

> birth such as slow growth rate and head size. He has woken up once a

> month with

>

> leg pain since he was born. Last week he crawled in my lap whining

> that his

> fingers hurt. I have an appt. next week to get his bloodwork done. I

> contracted Lyme possibly right before or during my pregnancy with

> him and didn't

>

> know I had it until last year. I'm not sure if I'm overreacting but

> after

> reading so many heart breaking stories I decided I didn't want to

> wait until he

> has more symptoms.

>

> * ´¨) ¸.• ´¸.•* ´¨)¸. •*¨)

> (¸.•´ (¸ ;. •´ Tricia

>

> ________________________________

> From: Natasha Moiseyev <nmoiseyev@...>

>

> Sent: Thu, October 7, 2010 4:14:12 PM

> Subject: Re: [ ] Diagnosing congenital Lyme

>

> Have you thought of giving her an antibiotic " challenge " -- then

> retesting? I

> don't know why not to do Igenex test -- they could do the bloodtest

> (with more

> determinative bands) and a PCR teset, which is how I was ultimately

> diagnosed.

>

> Look for a Great article about Barbara Corson by betterhealthguy.com

> -- this

> article is what led me to go back through all of my daughters'

> medical records

> from birth and conclude that they had a ton of symptoms that all

> pointed to Lyme

>

> -- thus that they probably were congenital -- thus leading to me and

> my husband

> being tested and coming out positive.

>

> Also, Lyme could have caused her to be a preemie.

>

> Natasha

>

> ________________________________

> From: margaret_behrns <spamneggs@...>

>

> Sent: Thu, October 7, 2010 5:04:48 AM

> Subject: [ ] Diagnosing congenital Lyme

>

> For those of you who have kids with congenital Lyme, can you please

> share the

> best diagnostic test to get? I suspect Lyme in my 4 year old but

> she's tested

> negative twice on the Western Blot (but band 41 is reactive same as

> my first

> " negative test. " We saw a LLMD in Vienna and he ran the proxy tests

> CD57 and C4a

>

> and they do not indicate Lyme infection. He said not to bother with

> the IGenex

> Western Blot or any other antibody test and instead he came up with

> about 5

> different tests that we should do (since no one test is definitive)

> to the tune

> of $1,200 which we just can't do. It is so frustrating that there

> isn't a good

> test to help us know whether this bacteria is affecting my daughter.

> Any advice?

>

> We've realized that a ton of her symptoms were caused by yeast and

> working on

> that has helped a lot, and she has just been diagnosed with pancreatic

> dysfunction (enyzyme are blocked or not being produced) but no cause

> has been

> identified (ruled out Cystic Fibrosis). She's a former preemie so it

> is hard to

> differntiate what caused what, but I suspect I've had Lyme for 20

> years and

> could very well have passed it along.

>

>

[Guest guest]

Thanks for all the input. The LLMD said that if she got it from me it would

never show up on any antibody test so it was a waste to do any blot. Have those

of you whose kids have congenital Lyme gotten it to show up on a blot??? If you

could please tell me how your kids were diagnosed with congenital Lyme it would

help me a lot! As for the antibiotics, here is the kicker---we can't give her

antibiotics. We would have to do some kind of herbal/whole foods/essential oil

protocol because her body can't handle it.

>

> > Tricia -

> >

> > Definitely the right move. And be sure they give you the results so

> > you can see

> > if there is ANY

> > sign of Lyme in the test. And I strongly recommend you get the

> > Igenex Western

> > Blot because of the number of Lyme-specific bands they test for --

> > far more than

> > the typical one. If he still comes out negative, keep track of every

> > little

> > symptom and ask the doctor about them as they come up. It is not

> > normal for a

> > child to have growing pains, actually, and certainly not for their

> > fingers to

> > hurt at that age (unless smashed in doors, under people's feet,

> > etc. ;0))

> >

> > Will be thinking of you and your son in particular in the coming weeks

> >

> > Natasha

> >

> > ________________________________

> > From: Tricia Soderstrom <TriciaSod@...>

> >

> > Sent: Thu, October 7, 2010 2:08:10 PM

> > Subject: Re: [ ] Diagnosing congenital Lyme

> >

> > My 3 year old was born healthy though a few weird things happened

> > after his

> > birth such as slow growth rate and head size. He has woken up once a

> > month with

> >

> > leg pain since he was born. Last week he crawled in my lap whining

> > that his

> > fingers hurt. I have an appt. next week to get his bloodwork done. I

> > contracted Lyme possibly right before or during my pregnancy with

> > him and didn't

> >

> > know I had it until last year. I'm not sure if I'm overreacting but

> > after

> > reading so many heart breaking stories I decided I didn't want to

> > wait until he

> > has more symptoms.

> >

> > * ´¨) ¸.• ´¸.•* ´¨)¸. •*¨)

> > (¸.•´ (¸ ;. •´ Tricia

> >

> > ________________________________

> > From: Natasha Moiseyev <nmoiseyev@...>

> >

> > Sent: Thu, October 7, 2010 4:14:12 PM

> > Subject: Re: [ ] Diagnosing congenital Lyme

> >

> > Have you thought of giving her an antibiotic " challenge " -- then

> > retesting? I

> > don't know why not to do Igenex test -- they could do the bloodtest

> > (with more

> > determinative bands) and a PCR teset, which is how I was ultimately

> > diagnosed.

> >

> > Look for a Great article about Barbara Corson by betterhealthguy.com

> > -- this

> > article is what led me to go back through all of my daughters'

> > medical records

> > from birth and conclude that they had a ton of symptoms that all

> > pointed to Lyme

> >

> > -- thus that they probably were congenital -- thus leading to me and

> > my husband

> > being tested and coming out positive.

> >

> > Also, Lyme could have caused her to be a preemie.

> >

> > Natasha

> >

> > ________________________________

> > From: margaret_behrns <spamneggs@...>

> >

> > Sent: Thu, October 7, 2010 5:04:48 AM

> > Subject: [ ] Diagnosing congenital Lyme

> >

> > For those of you who have kids with congenital Lyme, can you please

> > share the

> > best diagnostic test to get? I suspect Lyme in my 4 year old but

> > she's tested

> > negative twice on the Western Blot (but band 41 is reactive same as

> > my first

> > " negative test. " We saw a LLMD in Vienna and he ran the proxy tests

> > CD57 and C4a

> >

> > and they do not indicate Lyme infection. He said not to bother with

> > the IGenex

> > Western Blot or any other antibody test and instead he came up with

> > about 5

> > different tests that we should do (since no one test is definitive)

> > to the tune

> > of $1,200 which we just can't do. It is so frustrating that there

> > isn't a good

> > test to help us know whether this bacteria is affecting my daughter.

> > Any advice?

> >

> > We've realized that a ton of her symptoms were caused by yeast and

> > working on

> > that has helped a lot, and she has just been diagnosed with pancreatic

> > dysfunction (enyzyme are blocked or not being produced) but no cause

> > has been

> > identified (ruled out Cystic Fibrosis). She's a former preemie so it

> > is hard to

> > differntiate what caused what, but I suspect I've had Lyme for 20

> > years and

> > could very well have passed it along.

> >

> >

[Guest guest]

I also had undetected Lyme for probably 20+ years and I understand your

frustration with all of this. We are pretty sure my sons were both born w/ Lyme

but only one tested positive, CDC actually, (I think because he was also bitten

by a tick at about 1 yr-- so I think his body started to fight it) and my other

son tested negative. His IgM (thru IGenex) was totally negative except #41 was

IND. His IgG only showed IND on #31 and #39 with ++ on # 41. He tested + for

Bartonella though so through treatment of that he has responded to the meds and

has been clinically diagnosed w/ Lyme. I would find a dr who will test through

IGenex. Also, my CD57 was fine and did not indicated Lyme. Best wishes.

________________________________

From: margaret_behrns <spamneggs@...>

Sent: Thu, October 7, 2010 5:04:48 AM

Subject: [ ] Diagnosing congenital Lyme

For those of you who have kids with congenital Lyme, can you please share the

best diagnostic test to get? I suspect Lyme in my 4 year old but she's tested

negative twice on the Western Blot (but band 41 is reactive same as my first

" negative test. " We saw a LLMD in Vienna and he ran the proxy tests CD57 and C4a

and they do not indicate Lyme infection. He said not to bother with the IGenex

Western Blot or any other antibody test and instead he came up with about 5

different tests that we should do (since no one test is definitive) to the tune

of $1,200 which we just can't do. It is so frustrating that there isn't a good

test to help us know whether this bacteria is affecting my daughter. Any advice?

We've realized that a ton of her symptoms were caused by yeast and working on

that has helped a lot, and she has just been diagnosed with pancreatic

dysfunction (enyzyme are blocked or not being produced) but no cause has been

identified (ruled out Cystic Fibrosis). She's a former preemie so it is hard to

differntiate what caused what, but I suspect I've had Lyme for 20 years and

could very well have passed it along.

[Guest guest]

I can't comment on the congenital aspect of this topic as my children were

exposed sometime in last few years. However we tested my daughter twice through

igenix in the last 6 months and Stony Brook University once with a request from

Llmd to report on all bands and her Stonybrook test was much more indicative for

Lyme than Igenix.Not CDC positive but showed 9 reactive bands. Stonybrook is a

highly reputable lab even by the most skeptical of non-Llmd's and a bonus is

they do take many insurance plans! Just thought it might be another option for

you!

,

In , " margaret_behrns " <spamneggs@...> wrote:

>

> Thanks for all the input. The LLMD said that if she got it from me it would

never show up on any antibody test so it was a waste to do any blot. Have those

of you whose kids have congenital Lyme gotten it to show up on a blot??? If you

could please tell me how your kids were diagnosed with congenital Lyme it would

help me a lot! As for the antibiotics, here is the kicker---we can't give her

antibiotics. We would have to do some kind of herbal/whole foods/essential oil

protocol because her body can't handle it.

>

>

> >

> > > Tricia -

> > >

> > > Definitely the right move. And be sure they give you the results so

> > > you can see

> > > if there is ANY

> > > sign of Lyme in the test. And I strongly recommend you get the

> > > Igenex Western

> > > Blot because of the number of Lyme-specific bands they test for --

> > > far more than

> > > the typical one. If he still comes out negative, keep track of every

> > > little

> > > symptom and ask the doctor about them as they come up. It is not

> > > normal for a

> > > child to have growing pains, actually, and certainly not for their

> > > fingers to

> > > hurt at that age (unless smashed in doors, under people's feet,

> > > etc. ;0))

> > >

> > > Will be thinking of you and your son in particular in the coming weeks

> > >

> > > Natasha

> > >

> > > ________________________________

> > > From: Tricia Soderstrom <TriciaSod@>

> > >

> > > Sent: Thu, October 7, 2010 2:08:10 PM

> > > Subject: Re: [ ] Diagnosing congenital Lyme

> > >

> > > My 3 year old was born healthy though a few weird things happened

> > > after his

> > > birth such as slow growth rate and head size. He has woken up once a

> > > month with

> > >

> > > leg pain since he was born. Last week he crawled in my lap whining

> > > that his

> > > fingers hurt. I have an appt. next week to get his bloodwork done. I

> > > contracted Lyme possibly right before or during my pregnancy with

> > > him and didn't

> > >

> > > know I had it until last year. I'm not sure if I'm overreacting but

> > > after

> > > reading so many heart breaking stories I decided I didn't want to

> > > wait until he

> > > has more symptoms.

> > >

> > > * ´¨) ¸.• ´¸.•* ´¨)¸. •*¨)

> > > (¸.•´ (¸ ;. •´ Tricia

> > >

> > > ________________________________

> > > From: Natasha Moiseyev <nmoiseyev@>

> > >

> > > Sent: Thu, October 7, 2010 4:14:12 PM

> > > Subject: Re: [ ] Diagnosing congenital Lyme

> > >

> > > Have you thought of giving her an antibiotic " challenge " -- then

> > > retesting? I

> > > don't know why not to do Igenex test -- they could do the bloodtest

> > > (with more

> > > determinative bands) and a PCR teset, which is how I was ultimately

> > > diagnosed.

> > >

> > > Look for a Great article about Barbara Corson by betterhealthguy.com

> > > -- this

> > > article is what led me to go back through all of my daughters'

> > > medical records

> > > from birth and conclude that they had a ton of symptoms that all

> > > pointed to Lyme

> > >

> > > -- thus that they probably were congenital -- thus leading to me and

> > > my husband

> > > being tested and coming out positive.

> > >

> > > Also, Lyme could have caused her to be a preemie.

> > >

> > > Natasha

> > >

> > > ________________________________

> > > From: margaret_behrns <spamneggs@>

> > >

> > > Sent: Thu, October 7, 2010 5:04:48 AM

> > > Subject: [ ] Diagnosing congenital Lyme

> > >

> > > For those of you who have kids with congenital Lyme, can you please

> > > share the

> > > best diagnostic test to get? I suspect Lyme in my 4 year old but

> > > she's tested

> > > negative twice on the Western Blot (but band 41 is reactive same as

> > > my first

> > > " negative test. " We saw a LLMD in Vienna and he ran the proxy tests

> > > CD57 and C4a

> > >

> > > and they do not indicate Lyme infection. He said not to bother with

> > > the IGenex

> > > Western Blot or any other antibody test and instead he came up with

> > > about 5

> > > different tests that we should do (since no one test is definitive)

> > > to the tune

> > > of $1,200 which we just can't do. It is so frustrating that there

> > > isn't a good

> > > test to help us know whether this bacteria is affecting my daughter.

> > > Any advice?

> > >

> > > We've realized that a ton of her symptoms were caused by yeast and

> > > working on

> > > that has helped a lot, and she has just been diagnosed with pancreatic

> > > dysfunction (enyzyme are blocked or not being produced) but no cause

> > > has been

> > > identified (ruled out Cystic Fibrosis). She's a former preemie so it

> > > is hard to

> > > differntiate what caused what, but I suspect I've had Lyme for 20

> > > years and

> > > could very well have passed it along.

> > >

> > >

[Guest guest]

Who do you see at SB ? Do you see Dr. Beneri and Dr. Nachman in Ped. inf.

disease ? thats who we see. Also go to CT. to Dr. J and we see Dr. -Horn,

ped neuro.

>

> Thanks for all the input. The LLMD said that if she got it from me it would

never show up on any antibody test so it was a waste to do any blot. Have those

of you whose kids have congenital Lyme gotten it to show up on a blot??? If you

could please tell me how your kids were diagnosed with congenital Lyme it would

help me a lot! As for the antibiotics, here is the kicker---we can't give her

antibiotics. We would have to do some kind of herbal/whole foods/essential oil

protocol because her body can't handle it.

>

>

> >

> > > Tricia -

> > >

> > > Definitely the right move. And be sure they give you the results so 

> > > you can see

> > > if there is ANY

> > > sign of Lyme in the test. And I strongly recommend you get the 

> > > Igenex Western

> > > Blot because of the number of Lyme-specific bands they test for -- 

> > > far more than

> > > the typical one. If he still comes out negative, keep track of every 

> > > little

> > > symptom and ask the doctor about them as they come up. It is not 

> > > normal for a

> > > child to have growing pains, actually, and certainly not for their 

> > > fingers to

> > > hurt at that age (unless smashed in doors, under people's feet, 

> > > etc. ;0))

> > >

> > > Will be thinking of you and your son in particular in the coming weeks

> > >

> > > Natasha

> > >

> > > ________________________________

> > > From: Tricia Soderstrom <TriciaSod@>

> > >

> > > Sent: Thu, October 7, 2010 2:08:10 PM

> > > Subject: Re: [ ] Diagnosing congenital Lyme

> > >

> > > My 3 year old was born healthy though a few weird things happened 

> > > after his

> > > birth such as slow growth rate and head size. He has woken up once a 

> > > month with

> > >

> > > leg pain since he was born. Last week he crawled in my lap whining 

> > > that his

> > > fingers hurt. I have an appt. next week to get his bloodwork done. I

> > > contracted Lyme possibly right before or during my pregnancy with 

> > > him and didn't

> > >

> > > know I had it until last year. I'm not sure if I'm overreacting but 

> > > after

> > > reading so many heart breaking stories I decided I didn't want to 

> > > wait until he

> > > has more symptoms.

> > >

> > > * ´¨) ¸.• ´¸.•* ´¨)¸. •*¨)

> > > (¸.•´ (¸ ;. •´ Tricia

> > >

> > > ________________________________

> > > From: Natasha Moiseyev <nmoiseyev@>

> > >

> > > Sent: Thu, October 7, 2010 4:14:12 PM

> > > Subject: Re: [ ] Diagnosing congenital Lyme

> > >

> > > Have you thought of giving her an antibiotic " challenge " -- then 

> > > retesting? I

> > > don't know why not to do Igenex test -- they could do the bloodtest 

> > > (with more

> > > determinative bands) and a PCR teset, which is how I was ultimately 

> > > diagnosed.

> > >

> > > Look for a Great article about Barbara Corson by betterhealthguy.com 

> > > -- this

> > > article is what led me to go back through all of my daughters' 

> > > medical records

> > > from birth and conclude that they had a ton of symptoms that all 

> > > pointed to Lyme

> > >

> > > -- thus that they probably were congenital -- thus leading to me and 

> > > my husband

> > > being tested and coming out positive.

> > >

> > > Also, Lyme could have caused her to be a preemie.

> > >

> > > Natasha

> > >

> > > ________________________________

> > > From: margaret_behrns <spamneggs@>

> > >

> > > Sent: Thu, October 7, 2010 5:04:48 AM

> > > Subject: [ ] Diagnosing congenital Lyme

> > >

> > > For those of you who have kids with congenital Lyme, can you please 

> > > share the

> > > best diagnostic test to get? I suspect Lyme in my 4 year old but 

> > > she's tested

> > > negative twice on the Western Blot (but band 41 is reactive same as 

> > > my first

> > > " negative test. " We saw a LLMD in Vienna and he ran the proxy tests 

> > > CD57 and C4a

> > >

> > > and they do not indicate Lyme infection. He said not to bother with 

> > > the IGenex

> > > Western Blot or any other antibody test and instead he came up with 

> > > about 5

> > > different tests that we should do (since no one test is definitive) 

> > > to the tune

> > > of $1,200 which we just can't do. It is so frustrating that there 

> > > isn't a good

> > > test to help us know whether this bacteria is affecting my daughter. 

> > > Any advice?

> > >

> > > We've realized that a ton of her symptoms were caused by yeast and 

> > > working on

> > > that has helped a lot, and she has just been diagnosed with pancreatic

> > > dysfunction (enyzyme are blocked or not being produced) but no cause 

> > > has been

> > > identified (ruled out Cystic Fibrosis). She's a former preemie so it 

> > > is hard to

> > > differntiate what caused what, but I suspect I've had Lyme for 20 

> > > years and

> > > could very well have passed it along.

> > >

> > >

[Guest guest]

We took our daughter to Dr. when she was two because she became

very ill with a very high fever and then developed severe swelling on

the side of her face. We took her to the ER and they gave her IV

rocephin but didn't have a real diagnosis for us. They said to get her

IM rocephin the next two days at her ped office. The morning after the

IV treatment, she was totally fine like magic. Hubby and I (both loooong

term Lyme patients) immediately made an appt with Dr. for her.

About six months prior to this, my daughter was showing signs of Autism

and at the same time she got sick, we had her evaluated for speech

delay, motor issues and Autism. She was diagnosed PDD-NOS (Autism) and

started therapies. I didn't know right away that she could have Lyme

induced Autism but that is exactly what it was. Her western blot and

other tests were unremarkable (I'd never heard that wb's for congenital

lyme were useless... that's interesting) but the antibiotics had her

making huge leaps / improvements with her Autism! The therapists were

all stunned. Increases in speech, then surges in social interaction...

She is now very high functioning diagnosed with Asperger Syndrome (a

type of Autism).

I think Dr. had to just diagnose based on the initial symptoms and

the Autism and, of course, my history of very late stage Lyme. I treated

while pregnant but relapsed badly in my third trimester which is when I

think she was infected. Placenta, cord blood and later urine testing

were all Igenex and negative for Lyme. Dr. said I should have also

tested for Bartonella b/c that probably would have come back positive...

Btw, we recently saw Dr. Ken Bock, and excellent biomedical Autism doc

and he said that yes, it makes sense that she is a case of Lyme induced

Autism especially because she is completely unvaccinated (I became

severely ill by a vaccine as an adult when I didn't know I had Lyme so

there was no way I was giving a possibly infected baby one when she was

born... then the more I learned, the more I wouldn't give even a healthy

baby one!).

Jen

Lymie Parents and 5yo Lymie/Aspie

On 10/8/2010 5:16 PM, margaret_behrns wrote:

>

> Thanks for all the input. The LLMD said that if she got it from me it

> would never show up on any antibody test so it was a waste to do any

> blot. Have those of you whose kids have congenital Lyme gotten it to

> show up on a blot??? If you could please tell me how your kids were

> diagnosed with congenital Lyme it would help me a lot! As for the

> antibiotics, here is the kicker---we can't give her antibiotics. We

> would have to do some kind of herbal/whole foods/essential oil

> protocol because her body can't handle it.

>

[Guest guest]

Hi Jen thank you so much for your story, I'm so sorry your little girl has it.

I've been on the LIA boards a little bit and think is wonderful that a lot of

families are unraveling their mysteries and making ground. We just made an

appointment with a nutritionist in VA who takes pin prick of blood and looks at

them under dark field microscope. She can't rule out Lyme and she can't tell you

which strain you have (did you see scientists just broke the Genome code--13

variations of Lyme bacteria and I think CDC blots only test for 2, Igenex only

for 3) but she can tell you if you have spirochetes or not within one hour. That

will help me decide whether to keep looking for the tests that can diagnose her.

What do you make of this initial approach? Because of her other conditions, we

can't do the abx. so we will be looking hard for someone who can treat her

naturally.

> >

> > Thanks for all the input. The LLMD said that if she got it from me it

> > would never show up on any antibody test so it was a waste to do any

> > blot. Have those of you whose kids have congenital Lyme gotten it to

> > show up on a blot??? If you could please tell me how your kids were

> > diagnosed with congenital Lyme it would help me a lot! As for the

> > antibiotics, here is the kicker---we can't give her antibiotics. We

> > would have to do some kind of herbal/whole foods/essential oil

> > protocol because her body can't handle it.

> >

>

>

>

>

[Guest guest]

Both of my teenage boys have congenital Lyme. Both had lab work through IGeneX.

My youngest who is very sick had many positive bands on IgG and IgM but not CDC

positive. My oldest had only a couple of barely positive bands but were the

specific ones to borrelia. He has started doxy and it is believed that he will

show more positive after a month or so.

I just finished watching Pamela Wintraub's speech at the NIH conference. It is

availble online. She was fantastic but even better were the comments from people

afterwards and she addressed some questions. I hardly ever cry but I teared up a

couple of times. I think it was just hearing other live humans speak about their

families effected by Lyme. It is so hard when it is more than one person being

treated.

Today I was trained how to administer IV antibiotics. I feel such a sense of

relief today that my youngest may be better by spring.

Wishing everyone wellness,

Kari

> >

> > Thanks for all the input. The LLMD said that if she got it from me it

> > would never show up on any antibody test so it was a waste to do any

> > blot. Have those of you whose kids have congenital Lyme gotten it to

> > show up on a blot??? If you could please tell me how your kids were

> > diagnosed with congenital Lyme it would help me a lot! As for the

> > antibiotics, here is the kicker---we can't give her antibiotics. We

> > would have to do some kind of herbal/whole foods/essential oil

> > protocol because her body can't handle it.

> >

>

>

>

>

[Guest guest]

I'm looking to eventually treat our daughter naturally if I can find a

protocol that is strong enough to keep her at least stable where she is.

Many patients have recommended Buhner's protocol and there is a

group for it. I'm trying to read his book Healing Lyme right now to see

how it works. There are many natural antibiotics, in fact many are also

antiviral and antifungal!

Jen

Lymie parents, 5yo Lymie/Aspie

On 10/16/2010 8:11 AM, margaret_behrns wrote:

>

> Hi Jen thank you so much for your story, I'm so sorry your little girl

> has it. I've been on the LIA boards a little bit and think is

> wonderful that a lot of families are unraveling their mysteries and

> making ground. We just made an appointment with a nutritionist in VA

> who takes pin prick of blood and looks at them under dark field

> microscope. She can't rule out Lyme and she can't tell you which

> strain you have (did you see scientists just broke the Genome code--13

> variations of Lyme bacteria and I think CDC blots only test for 2,

> Igenex only for 3) but she can tell you if you have spirochetes or not

> within one hour. That will help me decide whether to keep looking for

> the tests that can diagnose her. What do you make of this initial

> approach? Because of her other conditions, we can't do the abx. so we

> will be looking hard for someone who can treat her naturally.

>

[Guest guest]

Many blessing to you - we took natural supplements for over two years and it

kept the girls lyme in ck mostly - but now can not afford them anymore and the

lyme is taking over....so keeping it in ck is good in my opinion but you need to

control it and not just keep it under control.......should of spent the money on

abx treatment the way I see it........but everyone is different......good

luck....bless you

________________________________

From: <jenuhferr@...>

Sent: Mon, October 25, 2010 2:07:30 PM

Subject: Re: [ ] Re: Diagnosing congenital Lyme

 

I'm looking to eventually treat our daughter naturally if I can find a

protocol that is strong enough to keep her at least stable where she is.

Many patients have recommended Buhner's protocol and there is a

group for it. I'm trying to read his book Healing Lyme right now to see

how it works. There are many natural antibiotics, in fact many are also

antiviral and antifungal!

Jen

Lymie parents, 5yo Lymie/Aspie

On 10/16/2010 8:11 AM, margaret_behrns wrote:

>

> Hi Jen thank you so much for your story, I'm so sorry your little girl

> has it. I've been on the LIA boards a little bit and think is

> wonderful that a lot of families are unraveling their mysteries and

> making ground. We just made an appointment with a nutritionist in VA

> who takes pin prick of blood and looks at them under dark field

> microscope. She can't rule out Lyme and she can't tell you which

> strain you have (did you see scientists just broke the Genome code--13

> variations of Lyme bacteria and I think CDC blots only test for 2,

> Igenex only for 3) but she can tell you if you have spirochetes or not

> within one hour. That will help me decide whether to keep looking for

> the tests that can diagnose her. What do you make of this initial

> approach? Because of her other conditions, we can't do the abx. so we

> will be looking hard for someone who can treat her naturally.

>

[Guest guest]

My sister went the natural route as she could not tolerate the anx

treatment. She went to a nutritionist for help and she got much

better. Her diet is very restricted and does things like special

smoothies in the am with certain ingredients to keep her system

balanced and then took certain herbs to treat the spirochetes.

I also know that chinese medicine works great too if you can find a

really good herbal specialist that can treat your lymes with raw

herbs. The tea tastes gross but it's worth every drop when it makes

you feel better. Just know that it takes months of treatment to see

results just like the anx. And they can also treat your herx's.

Suzanne

On Oct 25, 2010, at 2:07 PM, wrote:

> I'm looking to eventually treat our daughter naturally if I can find a

> protocol that is strong enough to keep her at least stable where she

> is.

> Many patients have recommended Buhner's protocol and there is a

> group for it. I'm trying to read his book Healing Lyme right now to

> see

> how it works. There are many natural antibiotics, in fact many are

> also

> antiviral and antifungal!

>

> Jen

> Lymie parents, 5yo Lymie/Aspie

>

> On 10/16/2010 8:11 AM, margaret_behrns wrote:

> >

> > Hi Jen thank you so much for your story, I'm so sorry your little

> girl

> > has it. I've been on the LIA boards a little bit and think is

> > wonderful that a lot of families are unraveling their mysteries and

> > making ground. We just made an appointment with a nutritionist in VA

> > who takes pin prick of blood and looks at them under dark field

> > microscope. She can't rule out Lyme and she can't tell you which

> > strain you have (did you see scientists just broke the Genome

> code--13

> > variations of Lyme bacteria and I think CDC blots only test for 2,

> > Igenex only for 3) but she can tell you if you have spirochetes or

> not

> > within one hour. That will help me decide whether to keep looking

> for

> > the tests that can diagnose her. What do you make of this initial

> > approach? Because of her other conditions, we can't do the abx. so

> we

> > will be looking hard for someone who can treat her naturally.

> >

>

>