Re: gestational Lyme disease

March 31, 2011

Step one, before you even go here, is to make sure that you get a *proper* Lyme

test.

Your doctors probably gave her the ELISA/Western blot 1-2 combo. That's a

neutered test that does not test for the most definitive Lyme proteins (for old

political reasons that are a decade out of date). It notoriously misses anywhere

from a third to half of all true Lyme cases -- you're almost better off throwing

darts at the wall.

What you want is the full-spectrum test offered by Igenex Labs in Palo Alto, CA.

Most MDs will not order this; and your insurance almost certainly will not pay

for it. But in the presence of these other symptoms, you cannot dismiss Lyme as

a possible cause until your daughter has had this test.

At this stage, you need to find a Lyme-literate MD (LLMD) in your area, and

proceed in that direction. If you had to fight that hard for a single course of

antibiotics, you're almost certainly not going to get your doctors to cooperate

with the program of long-term antibiotics that will be necessary of your

daughter's Igenex test comes back positive. (If she's had it her whole life,

even if she got it by being bit as a baby, the long experience of this list is

that it's going to take a lot more than a month of doxy to shake it.) An LLMD

will get you the Igenex test, and will also ensure you get the kind of treatment

that will also get rid of the Lyme.

I'm sorry if all of this is a bit overwhelming. If it is Lyme, you're entering

one of the most controversial disease landscapes in the country, and your usual

MDs will not be much help.

Sara

On Mar 29, 2011, at 2:34 29PM, JoAnn wrote:

> Hello,

> I am new here.

>

> My husband had Lyme in 2008 and now my 2 year old daughter had second degree

> heart block and we have been told that the most common cause is Lyme disease

> (or maternal Lupus which I am negative for), but she is seronegative on

> multiple tests. Since we live in a Lyme infested area I literally beg 5

> different MD's for antibiotics and after 3 weeks I was finally successful in

> obtaining a prescription for her. I am so totally stressed out over this.

>

> So on to my question:

> Can anyone point me to literature that discusses gestational Lyme disease.

> I am interested in weather children born to mothers who have Lyme test

> negative because they picked it up during gestation, or are all these

> children testing positive. How do they fair with treatment??

>

> Thank you for any information you can send me,

> Thanks!

>

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

>

> Lyme Disease News continually updated from thousands of sources around the

> net: http://www.topix.net/health/lyme-disease

>

> MedWorm: The latest items on: Lyme Disease

> http://tinyurl.com/23dgy8

>

March 31, 2011

Where do u live??

On Wed Mar 30th, 2011 9:32 PM CDT Sara wrote:

>Step one, before you even go here, is to make sure that you get a *proper* Lyme

test.

>

>Your doctors probably gave her the ELISA/Western blot 1-2 combo. That's a

neutered test that does not test for the most definitive Lyme proteins (for old

political reasons that are a decade out of date). It notoriously misses anywhere

from a third to half of all true Lyme cases -- you're almost better off throwing

darts at the wall.

>

>What you want is the full-spectrum test offered by Igenex Labs in Palo Alto,

CA. Most MDs will not order this; and your insurance almost certainly will not

pay for it. But in the presence of these other symptoms, you cannot dismiss Lyme

as a possible cause until your daughter has had this test.

>

>At this stage, you need to find a Lyme-literate MD (LLMD) in your area, and

proceed in that direction. If you had to fight that hard for a single course of

antibiotics, you're almost certainly not going to get your doctors to cooperate

with the program of long-term antibiotics that will be necessary of your

daughter's Igenex test comes back positive. (If she's had it her whole life,

even if she got it by being bit as a baby, the long experience of this list is

that it's going to take a lot more than a month of doxy to shake it.) An LLMD

will get you the Igenex test, and will also ensure you get the kind of treatment

that will also get rid of the Lyme.

>

>I'm sorry if all of this is a bit overwhelming. If it is Lyme, you're entering

one of the most controversial disease landscapes in the country, and your usual

MDs will not be much help.

>

>Sara

>

>On Mar 29, 2011, at 2:34 29PM, JoAnn wrote:

>

>> Hello,

>> I am new here.

>>

>> My husband had Lyme in 2008 and now my 2 year old daughter had second degree

>> heart block and we have been told that the most common cause is Lyme disease

>> (or maternal Lupus which I am negative for), but she is seronegative on

>> multiple tests. Since we live in a Lyme infested area I literally beg 5

>> different MD's for antibiotics and after 3 weeks I was finally successful in

>> obtaining a prescription for her. I am so totally stressed out over this.

>>

>> So on to my question:

>> Can anyone point me to literature that discusses gestational Lyme disease.

>> I am interested in weather children born to mothers who have Lyme test

>> negative because they picked it up during gestation, or are all these

>> children testing positive. How do they fair with treatment??

>>

>> Thank you for any information you can send me,

>> Thanks!

>>

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

>>

>> Lyme Disease News continually updated from thousands of sources around the

>> net: http://www.topix.net/health/lyme-disease

>>

>> MedWorm: The latest items on: Lyme Disease

>> http://tinyurl.com/23dgy8

>>

March 31, 2011

The more important question is: Where do you live?

We don't give out the names of our doctors on-list, but if you tell us where you

are, someone in your area can point you in the right direction.

On Mar 30, 2011, at 7:47 36PM, Diane Biel wrote:

> Where do u live??

>

> On Wed Mar 30th, 2011 9:32 PM CDT Sara wrote:

>

>> Step one, before you even go here, is to make sure that you get a *proper*

Lyme test.

>>

>> Your doctors probably gave her the ELISA/Western blot 1-2 combo. That's a

neutered test that does not test for the most definitive Lyme proteins (for old

political reasons that are a decade out of date). It notoriously misses anywhere

from a third to half of all true Lyme cases -- you're almost better off throwing

darts at the wall.

>>

>> What you want is the full-spectrum test offered by Igenex Labs in Palo Alto,

CA. Most MDs will not order this; and your insurance almost certainly will not

pay for it. But in the presence of these other symptoms, you cannot dismiss Lyme

as a possible cause until your daughter has had this test.

>>

>> At this stage, you need to find a Lyme-literate MD (LLMD) in your area, and

proceed in that direction. If you had to fight that hard for a single course of

antibiotics, you're almost certainly not going to get your doctors to cooperate

with the program of long-term antibiotics that will be necessary of your

daughter's Igenex test comes back positive. (If she's had it her whole life,

even if she got it by being bit as a baby, the long experience of this list is

that it's going to take a lot more than a month of doxy to shake it.) An LLMD

will get you the Igenex test, and will also ensure you get the kind of treatment

that will also get rid of the Lyme.

>>

>> I'm sorry if all of this is a bit overwhelming. If it is Lyme, you're

entering one of the most controversial disease landscapes in the country, and

your usual MDs will not be much help.

>>

>> Sara

>>

>> On Mar 29, 2011, at 2:34 29PM, JoAnn wrote:

>>

>>> Hello,

>>> I am new here.

>>>

>>> My husband had Lyme in 2008 and now my 2 year old daughter had second degree

>>> heart block and we have been told that the most common cause is Lyme disease

>>> (or maternal Lupus which I am negative for), but she is seronegative on

>>> multiple tests. Since we live in a Lyme infested area I literally beg 5

>>> different MD's for antibiotics and after 3 weeks I was finally successful in

>>> obtaining a prescription for her. I am so totally stressed out over this.

>>>

>>> So on to my question:

>>> Can anyone point me to literature that discusses gestational Lyme disease.

>>> I am interested in weather children born to mothers who have Lyme test

>>> negative because they picked it up during gestation, or are all these

>>> children testing positive. How do they fair with treatment??

>>>

>>> Thank you for any information you can send me,

>>> Thanks!

>>>

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

>>>

>>> Lyme Disease News continually updated from thousands of sources around the

>>> net: http://www.topix.net/health/lyme-disease

>>>

>>> MedWorm: The latest items on: Lyme Disease

>>> http://tinyurl.com/23dgy8

>>>

March 31, 2011

My whole family is CDC positive at Quest and many others here in FL are also pos

there and at LabCorp.Â Medicare is now paying for Igenex, so if you have that

you canÂ go right to them.Â I would test for co=infections as well.Â One woman

here was neg for lyme but pos for Rocky Mt. spotted fever and her IDSA doc

treated her forÂ both and even found Typhus.Â We have seen 5 LLMD's and many ID

docs who do believe in the chronicity of lyme and I know Neurologists,

Immunologists, Endocrinologists,Â Gastroenterologists, who also treat lyme in

conjunction with LLMD's and others.Â Not one doc I took my daughter to thought

of Brucella and she is IgM pos 5 times for that.....do your research and use as

many physicians as you can get to analyze this as well and enlist them.Â I have

been very successful in getting many non-LLMD's to pay attention to lyme. Not

every one can afford LLMD fees here in Fl and we need to recruit all docs to

understand lyme in every

State.Â All the best, Dolores

> Hello,

> I am new here.

>

> My husband had Lyme in 2008 and now my 2 year old daughter had second degree

> heart block and we have been told that the most common cause is Lyme disease

> (or maternal Lupus which I am negative for), but she is seronegative on

> multiple tests. Since we live in a Lyme infested area I literally beg 5

> different MD's for antibiotics and after 3 weeks I was finally successful in

> obtaining a prescription for her. I am so totally stressed out over this.

>

> So on to my question:

> Can anyone point me to literature that discusses gestational Lyme disease.

> I am interested in weather children born to mothers who have Lyme test

> negative because they picked it up during gestation, or are all these

> children testing positive. How do they fair with treatment??

>

> Thank you for any information you can send me,

> Thanks!

>

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

>

> Lyme Disease News continually updated from thousands of sources around the

> net: http://www.topix.net/health/lyme-disease

>

> MedWorm: The latest items on: Lyme Disease

> http://tinyurl.com/23dgy8

>

March 31, 2011

We live in Middletown Pennsylvania, near Media, it is a very woodsy suburban

area, where almost all of our neighbors have had Lyme and some have had to

fight for years to get treatment.

I would appreciate any and all feedback from the group, and I thank you all

in advance for you input.

I have received a list of names form of physicians from Turn the corner. But

many of them are far from us so any suggestions are welcome. I know some of

you have had success with the holistic health practitioners, but I am only

interested in seeing Medical Doctors (no offence to anyone who has chosen

that path) Are there any actual infectious disease specialist that are

considered Lyme literate???

It is amazing how the MD here have dug there heals in with us. I had the

infectious disease specialist at CHOP (who had denied us treatment) totally

lose it with me on the phone the other day when he discovered that we had

obtained antibiotic. He found out because CHOP uses electronic charts. He

insinuated that we were mistreating our child because we were determined to

find out what is the cause of her problem through further testing. He was

hoping mad. Egotistical. And boy do I have some other choice words to call

him that I will reframe from posting.

Please tell me since she has started the antibiotics, is there any point in

me having the Igenex test done??? Would it still show she is infected??? If

yes you have just given me my next mission.

I just pray she gets better, I am totally losing my mind over this.

Joann

From: [mailto: ] On Behalf

Of Diane Biel

Sent: Wednesday, March 30, 2011 10:48 PM

lyme-aid

Subject: Re: [ ] gestational Lyme disease

Where do u live??

On Wed Mar 30th, 2011 9:32 PM CDT Sara wrote:

>Step one, before you even go here, is to make sure that you get a *proper*

Lyme test.

>

>Your doctors probably gave her the ELISA/Western blot 1-2 combo. That's a

neutered test that does not test for the most definitive Lyme proteins (for

old political reasons that are a decade out of date). It notoriously misses

anywhere from a third to half of all true Lyme cases -- you're almost better

off throwing darts at the wall.

>

>What you want is the full-spectrum test offered by Igenex Labs in Palo

Alto, CA. Most MDs will not order this; and your insurance almost certainly

will not pay for it. But in the presence of these other symptoms, you cannot

dismiss Lyme as a possible cause until your daughter has had this test.

>

>At this stage, you need to find a Lyme-literate MD (LLMD) in your area, and

proceed in that direction. If you had to fight that hard for a single course

of antibiotics, you're almost certainly not going to get your doctors to

cooperate with the program of long-term antibiotics that will be necessary

of your daughter's Igenex test comes back positive. (If she's had it her

whole life, even if she got it by being bit as a baby, the long experience

of this list is that it's going to take a lot more than a month of doxy to

shake it.) An LLMD will get you the Igenex test, and will also ensure you

get the kind of treatment that will also get rid of the Lyme.

>

>I'm sorry if all of this is a bit overwhelming. If it is Lyme, you're

entering one of the most controversial disease landscapes in the country,

and your usual MDs will not be much help.

>

>Sara

>

>On Mar 29, 2011, at 2:34 29PM, JoAnn wrote:

>

>> Hello,

>> I am new here.

>>

>> My husband had Lyme in 2008 and now my 2 year old daughter had second

degree

>> heart block and we have been told that the most common cause is Lyme

disease

>> (or maternal Lupus which I am negative for), but she is seronegative on

>> multiple tests. Since we live in a Lyme infested area I literally beg 5

>> different MD's for antibiotics and after 3 weeks I was finally successful

in

>> obtaining a prescription for her. I am so totally stressed out over this.

>>

>> So on to my question:

>> Can anyone point me to literature that discusses gestational Lyme

disease.

>> I am interested in weather children born to mothers who have Lyme test

>> negative because they picked it up during gestation, or are all these

>> children testing positive. How do they fair with treatment??

>>

>> Thank you for any information you can send me,

>> Thanks!

>>

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

>>

>> Lyme Disease News continually updated from thousands of sources around

the

>> net: http://www.topix.net/health/lyme-disease

>>

>> MedWorm: The latest items on: Lyme Disease

>> http://tinyurl.com/23dgy8

>>

March 31, 2011

Has anyone used the Colombia University Medical Center Lyme and tick born

disease research center????

http://columbia-lyme.org/index.html

Jo

April 1, 2011

Unfortunately, the reaction you got from your ID specialist is pretty much what

you can expect from all ID specialists. That field has its own theory of the

disease, which was locked down over 20 years ago and has not been revised since,

even though reams of new data are now available. The doctors who wrote the ISDA

guidelines have been successfully sued for financial conflict of interest, so

it's no secret to anyone what's being protected here. So no: you will not find

members of the ISDA who are what we would consider Lyme-literate.

That said, your instinct to go with a licensed MD is one that I would support:

I'm wonky that way, too. In treating Lyme, you're looking for someone affiliated

with ILADS, and has taken their training and certification. Perhaps someone on

the list can point you to a doctor in the Middletown area. Many of us do go

pretty far afield for treatment by an ILADS doctor (for me, it was a three-hour

drive each way, across an international border), so that will not,

unfortunately, be an unusual experience.

Some LLMDs will send you the Igenex test kit in the mail before your

appointment, and allow you to get the draw done at a local lab. The results are

sent to the doctor in a week or two, so the doc will have it in hand at your

first visit. There's some legal risk to this -- ordering a test for a patient

you haven't seen can count as " treatment, " and doctors have been prosecuted for

it -- so some doctors won't do it, but it can make that first visit more

productive in terms of both time and money to have that in hand if you're coming

in from a distance.

Some doctors actually like to start some antibiotic treatment before sending for

the test, because it will make the bugs show up better on the test. So, no,

you're probably not hurting anything by starting the antibiotics now, as long as

you get her tested in the next couple months.

To bring yourself up to speed, check out Pamela Weintraub's excellent book,

" Cure Unknown, " and also the film " Under Our Skin. " These may be available at

your local library.

On Mar 31, 2011, at 6:22 25AM, JoAnn wrote:

> We live in Middletown Pennsylvania, near Media, it is a very woodsy suburban

> area, where almost all of our neighbors have had Lyme and some have had to

> fight for years to get treatment.

> I would appreciate any and all feedback from the group, and I thank you all

> in advance for you input.

>

> I have received a list of names form of physicians from Turn the corner. But

> many of them are far from us so any suggestions are welcome. I know some of

> you have had success with the holistic health practitioners, but I am only

> interested in seeing Medical Doctors (no offence to anyone who has chosen

> that path) Are there any actual infectious disease specialist that are

> considered Lyme literate???

>

> It is amazing how the MD here have dug there heals in with us. I had the

> infectious disease specialist at CHOP (who had denied us treatment) totally

> lose it with me on the phone the other day when he discovered that we had

> obtained antibiotic. He found out because CHOP uses electronic charts. He

> insinuated that we were mistreating our child because we were determined to

> find out what is the cause of her problem through further testing. He was

> hoping mad. Egotistical. And boy do I have some other choice words to call

> him that I will reframe from posting.

>

> Please tell me since she has started the antibiotics, is there any point in

> me having the Igenex test done??? Would it still show she is infected??? If

> yes you have just given me my next mission.

>

> I just pray she gets better, I am totally losing my mind over this.

>

> Joann

>

> From: [mailto: ] On Behalf

> Of Diane Biel

> Sent: Wednesday, March 30, 2011 10:48 PM

> lyme-aid

> Subject: Re: [ ] gestational Lyme disease

>

> Where do u live??

>

> On Wed Mar 30th, 2011 9:32 PM CDT Sara wrote:

>

>> Step one, before you even go here, is to make sure that you get a *proper*

> Lyme test.

>>

>> Your doctors probably gave her the ELISA/Western blot 1-2 combo. That's a

> neutered test that does not test for the most definitive Lyme proteins (for

> old political reasons that are a decade out of date). It notoriously misses

> anywhere from a third to half of all true Lyme cases -- you're almost better

> off throwing darts at the wall.

>>

>> What you want is the full-spectrum test offered by Igenex Labs in Palo

> Alto, CA. Most MDs will not order this; and your insurance almost certainly

> will not pay for it. But in the presence of these other symptoms, you cannot

> dismiss Lyme as a possible cause until your daughter has had this test.

>>

>> At this stage, you need to find a Lyme-literate MD (LLMD) in your area, and

> proceed in that direction. If you had to fight that hard for a single course

> of antibiotics, you're almost certainly not going to get your doctors to

> cooperate with the program of long-term antibiotics that will be necessary

> of your daughter's Igenex test comes back positive. (If she's had it her

> whole life, even if she got it by being bit as a baby, the long experience

> of this list is that it's going to take a lot more than a month of doxy to

> shake it.) An LLMD will get you the Igenex test, and will also ensure you

> get the kind of treatment that will also get rid of the Lyme.

>>

>> I'm sorry if all of this is a bit overwhelming. If it is Lyme, you're

> entering one of the most controversial disease landscapes in the country,

> and your usual MDs will not be much help.

>>

>> Sara

>>

>> On Mar 29, 2011, at 2:34 29PM, JoAnn wrote:

>>

>>> Hello,

>>> I am new here.

>>>

>>> My husband had Lyme in 2008 and now my 2 year old daughter had second

> degree

>>> heart block and we have been told that the most common cause is Lyme

> disease

>>> (or maternal Lupus which I am negative for), but she is seronegative on

>>> multiple tests. Since we live in a Lyme infested area I literally beg 5

>>> different MD's for antibiotics and after 3 weeks I was finally successful

> in

>>> obtaining a prescription for her. I am so totally stressed out over this.

>>>

>>> So on to my question:

>>> Can anyone point me to literature that discusses gestational Lyme

> disease.

>>> I am interested in weather children born to mothers who have Lyme test

>>> negative because they picked it up during gestation, or are all these

>>> children testing positive. How do they fair with treatment??

>>>

>>> Thank you for any information you can send me,

>>> Thanks!

>>>

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

>>>

>>> Lyme Disease News continually updated from thousands of sources around

> the

>>> net: http://www.topix.net/health/lyme-disease

>>>

>>> MedWorm: The latest items on: Lyme Disease

>>> http://tinyurl.com/23dgy8

>>>

April 1, 2011

There is an excellent group in Chester County lymepamail@.... Ask them

whom to contact.

Sent from my Verizon Wireless BlackBerry

Re: [ ] gestational Lyme disease