Re: Can lyme be transferred by family contact? (was adopted sib tests positive)

[Guest guest]

I would not rule out casual contact. So many of my son's therapists

have sick kids too and I think they are picking up infections working

with sick kids.

Caryn

> >

> > :

> >

> > Mainstream doctors and lyme doctors do not agree on things. We

> have lyme

> > doctors because there is a need for them since mainstream doctors

> are not

> > treating lyme patients in a satisfactory manner. It's ok to use

> two doctors as

> > long as you inform both of them what all treatments your children

> are under.

> > They can work together. If you use the Washington doctors, they

> know about

> > autism and lyme, so you may only need one doctor then. There

> seems to be a lot

> > of politics, insurance, and all kinds of strange things

happening

> to lyme

> > doctors. There are many books out there on it and lawsuits, on

> lyme docs and

> > on organizations that are going after lyme doctors, so generally

> lyme doctors'

> > names or doctors who treat lyme in general are not mentioned on

> forums,

> > except for initials. This is to protect them since we depend

upon

> them so much

> > and something very strange is going on with lyme. Like I said

> there are many

> > books out about it and many organizations are approaching

Congress

> about the

> > situation.

> >

> > I do have an adopted daughter, but she came with all of her

> symptoms and

> > diagnoses. She is much better now. Her symptoms were so severe

> that they were

> > going to put her into inpatient treatment, long-term for

> behavioral reasons.

> > I was their last resort. If anything, I think she gave us some

> things

> > because two in my house developed new behavioral issues since

her

> adoption, which

> > was about 2 years ago. She is now 6. Her behaviors were such

> that you had

> > to see it to believe it, but many of us on these forums have

seen

> a lot.

> >

> > Being that die-off from lyme treatments is so stressful on one's

> body, I

> > think it is good to get the digestion running good. Many report

> dumping metals

> > when treating for lyme, so a good digestive system will help

keep

> those loose

> > metals from recirculating. Ridding lyme also depends highly on

> the body's

> > health, so it may require fixing the body first or

> simultaneously. There is

> > no perfect way at this time, so choose whatever you feel is best

> for your

> > family based on what you believe in, have access to, can afford,

> can support,

> > etc.

> >

> > Love and prayers,

> >

> > Heidi N

> >

> >

> >

> > Heidi and Jill,

> >

> > Thank you both for your detailed and insightful comments! I do

> know

> > the lovely red ribbon story from CHina, and do think Abby was

> meant

> > to be with us, but can't help feeling guilty to think we may

have

> > infected her with lyme.

> >

> > We don't know anything about her birth family and very little

> about

> > her first year in China. She was in an orphanage that was poor,

> but

> > caring. She never was breastfed. It's very likely that she, like

> > most orphans in China, was fed melamime-tainted infant formula

> (One

> > girl in our adoption group has developed kidney stones.) We do

> know

> > she has two copies of a gluten sensitivty gene (but these genes

> are

> > very common, I understand). Sortly after we got home, I asked my

> > older daughter's DAN doctor to run some screening tests on Abby

> adn

> > we were suprised to find she had low cysteine, which I always

> thought

> > to be a marker for autism risk, and some very low levels of lead

> in

> > her blood. So yes, she was probably was vulnerable form the

> > outset. Still, she was a happy, healthy baby when we brought her

> > home, and something happened to trigger illness.

> >

> > Heidi, I thought I saw on an old post that you have an adopted

> child

> > as well as several biolgoical children and all had lyme. DId I

> read

> > this correctly? Do you think they contracted it from one another?

> >

> > My husband is the only one in our family who tests clearly

> negative

> > for lyme on the Western blot. I'm wondering if I have lyme, and

> may

> > have given it to my children, why I didn't give it to him as

well?

> >

> > Now that I've had a chance to ramble on about my global fears

(and

> > thank you, Heidi and Jill fo adressing them so knowledgably and

> > eloquently!)eloquently!)<WBR>, here are some more pra

> >

> > Our DAN doc says he sees a lot of ASD kids with positive IgMs

and

> > negative IgGs on the Western blot. I still don't understand how

> the

> > IgG could be negative, unless it is a brand new infection. Can

we

> > be sure that it is reallly lyme? I'm hearing my HMO docs on the

> > one hand say it's NOT lyme if there's a negative ELISA, and the

> lyme

> > docs saying it IS lyme if there is a positive Western blot, and

our

> > DAN doc sayign MAYBE it's lyme. Could it be some different

> pathogen

> > that mimics lyme on the Western blot, hence explaining the

> negative

> > ELISAs?

> >

> > Abby has an appointment with a lyme doctor (Dr. Marty Ross in

> > Seattle) on Friday. He treats with long-term antibiotics. We

> > also are hoping to get into see Klinghart or Amy Derkson, who

> treat

> > with herbal antimicrobials. How do we decide which route to go?

> >

> > Out DAN doc mentioned a test called 30/31 (?) to confirm lyme.

DO

> > you know anythign about that test?

> >

> > Our Dan doc recommended first treating Abbys gut issues (h.

> pylori,

> > candida and Klebsiella) with a combo of gentamyain,

meteobenzoate

> > (s/), bismtuh and amphoterican B, while we are waiting to see

him

> > later this month and do the confirmatory test for lyme. Is it

> > better to treat these other gut bugs first, or should we treat

for

> > lyme first, or do all at the same time?

> >

> > I expect the lyme doc will order tests for the co-infections.

Are

> > there any other tests we should request? Any specific questions

we

> > should ask the lyme doc?

> >

> > I'm wondering too what to do too about my older daughter, the

one

> > with ASD (Apsergers), whose WEstern blot was equivocal, even

after

> an

> > antibiotic challenge. I'm supposing she has lyme, but we can't

> > prove it. The lyme doc was willing to treat her with long-term

> > antibiotics, but our DAN doctor recommended against it when her

> > clostridia markers started going sky high. We didn't see much

> > improvment from the relatively short time (maybe a few months,

I'd

> > have to go back and check my records) she was on the lyme

> > antibiotic. Yet after we went off it, she eventually began to

> > regress (perhaps because we had expanded her diet somewhat,

going

> > from SCD to a low starch, low sugar GFCF). Two years ago she was

> > close to recovery. Now she is having sensory issues, restless

body

> > (ADHD type behavior), and other focus problems at school. THings

> > really got bad for her after her bout of viral meningitis this

> > summer. HBOT has helped some, but not enough to turn her around.

> > Should we try again treating her with antibiotics? What about

> using

> > several at once--one for lyme, one for the clostridia, etc? I'm

> > supposing I should go back to SCD for my older daughter, but

it's

> so

> > much harder as she gets older, especially now that my younger

one

> > reacts to nuts and is GFCF (so it's tempting to make the same

> foods

> > for both of them).

> >

> > I look forwrd to being part of this group.

> >

> >

> >

> >

> > **************Make your life easier with all your friends, email,

> and

> > favorite sites in one place. Try it now.

> > (http://www.aol.com/?optin=new-

> dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010)

> >

>

[Guest guest]

I know an awful lot of therapists with sick kids too.

> > >

> > > :

> > >

> > > Mainstream doctors and lyme doctors do not agree on things. We

> > have lyme

> > > doctors because there is a need for them since mainstream

doctors

> > are not

> > > treating lyme patients in a satisfactory manner. It's ok to

use

> > two doctors as

> > > long as you inform both of them what all treatments your

children

> > are under.

> > > They can work together. If you use the Washington doctors,

they

> > know about

> > > autism and lyme, so you may only need one doctor then. There

> > seems to be a lot

> > > of politics, insurance, and all kinds of strange things

> happening

> > to lyme

> > > doctors. There are many books out there on it and lawsuits,

on

> > lyme docs and

> > > on organizations that are going after lyme doctors, so

generally

> > lyme doctors'

> > > names or doctors who treat lyme in general are not mentioned

on

> > forums,

> > > except for initials. This is to protect them since we depend

> upon

> > them so much

> > > and something very strange is going on with lyme. Like I said

> > there are many

> > > books out about it and many organizations are approaching

> Congress

> > about the

> > > situation.

> > >

> > > I do have an adopted daughter, but she came with all of her

> > symptoms and

> > > diagnoses. She is much better now. Her symptoms were so

severe

> > that they were

> > > going to put her into inpatient treatment, long-term for

> > behavioral reasons.

> > > I was their last resort. If anything, I think she gave us

some

> > things

> > > because two in my house developed new behavioral issues since

> her

> > adoption, which

> > > was about 2 years ago. She is now 6. Her behaviors were such

> > that you had

> > > to see it to believe it, but many of us on these forums have

> seen

> > a lot.

> > >

> > > Being that die-off from lyme treatments is so stressful on

one's

> > body, I

> > > think it is good to get the digestion running good. Many

report

> > dumping metals

> > > when treating for lyme, so a good digestive system will help

> keep

> > those loose

> > > metals from recirculating. Ridding lyme also depends highly

on

> > the body's

> > > health, so it may require fixing the body first or

> > simultaneously. There is

> > > no perfect way at this time, so choose whatever you feel is

best

> > for your

> > > family based on what you believe in, have access to, can

afford,

> > can support,

> > > etc.

> > >

> > > Love and prayers,

> > >

> > > Heidi N

> > >

> > >

> > >

> > > Heidi and Jill,

> > >

> > > Thank you both for your detailed and insightful comments! I do

> > know

> > > the lovely red ribbon story from CHina, and do think Abby was

> > meant

> > > to be with us, but can't help feeling guilty to think we may

> have

> > > infected her with lyme.

> > >

> > > We don't know anything about her birth family and very little

> > about

> > > her first year in China. She was in an orphanage that was

poor,

> > but

> > > caring. She never was breastfed. It's very likely that she,

like

> > > most orphans in China, was fed melamime-tainted infant formula

> > (One

> > > girl in our adoption group has developed kidney stones.) We do

> > know

> > > she has two copies of a gluten sensitivty gene (but these genes

> > are

> > > very common, I understand). Sortly after we got home, I asked

my

> > > older daughter's DAN doctor to run some screening tests on

Abby

> > adn

> > > we were suprised to find she had low cysteine, which I always

> > thought

> > > to be a marker for autism risk, and some very low levels of

lead

> > in

> > > her blood. So yes, she was probably was vulnerable form the

> > > outset. Still, she was a happy, healthy baby when we brought

her

> > > home, and something happened to trigger illness.

> > >

> > > Heidi, I thought I saw on an old post that you have an adopted

> > child

> > > as well as several biolgoical children and all had lyme. DId I

> > read

> > > this correctly? Do you think they contracted it from one

another?

> > >

> > > My husband is the only one in our family who tests clearly

> > negative

> > > for lyme on the Western blot. I'm wondering if I have lyme,

and

> > may

> > > have given it to my children, why I didn't give it to him as

> well?

> > >

> > > Now that I've had a chance to ramble on about my global fears

> (and

> > > thank you, Heidi and Jill fo adressing them so knowledgably

and

> > > eloquently!)eloquently!)<WBR>, here are some more pra

> > >

> > > Our DAN doc says he sees a lot of ASD kids with positive IgMs

> and

> > > negative IgGs on the Western blot. I still don't understand

how

> > the

> > > IgG could be negative, unless it is a brand new infection. Can

> we

> > > be sure that it is reallly lyme? I'm hearing my HMO docs on

the

> > > one hand say it's NOT lyme if there's a negative ELISA, and the

> > lyme

> > > docs saying it IS lyme if there is a positive Western blot, and

> our

> > > DAN doc sayign MAYBE it's lyme. Could it be some different

> > pathogen

> > > that mimics lyme on the Western blot, hence explaining the

> > negative

> > > ELISAs?

> > >

> > > Abby has an appointment with a lyme doctor (Dr. Marty Ross in

> > > Seattle) on Friday. He treats with long-term antibiotics. We

> > > also are hoping to get into see Klinghart or Amy Derkson, who

> > treat

> > > with herbal antimicrobials. How do we decide which route to go?

> > >

> > > Out DAN doc mentioned a test called 30/31 (?) to confirm lyme.

> DO

> > > you know anythign about that test?

> > >

> > > Our Dan doc recommended first treating Abbys gut issues (h.

> > pylori,

> > > candida and Klebsiella) with a combo of gentamyain,

> meteobenzoate

> > > (s/), bismtuh and amphoterican B, while we are waiting to see

> him

> > > later this month and do the confirmatory test for lyme. Is it

> > > better to treat these other gut bugs first, or should we treat

> for

> > > lyme first, or do all at the same time?

> > >

> > > I expect the lyme doc will order tests for the co-infections.

> Are

> > > there any other tests we should request? Any specific questions

> we

> > > should ask the lyme doc?

> > >

> > > I'm wondering too what to do too about my older daughter, the

> one

> > > with ASD (Apsergers), whose WEstern blot was equivocal, even

> after

> > an

> > > antibiotic challenge. I'm supposing she has lyme, but we can't

> > > prove it. The lyme doc was willing to treat her with long-term

> > > antibiotics, but our DAN doctor recommended against it when

her

> > > clostridia markers started going sky high. We didn't see much

> > > improvment from the relatively short time (maybe a few months,

> I'd

> > > have to go back and check my records) she was on the lyme

> > > antibiotic. Yet after we went off it, she eventually began to

> > > regress (perhaps because we had expanded her diet somewhat,

> going

> > > from SCD to a low starch, low sugar GFCF). Two years ago she

was

> > > close to recovery. Now she is having sensory issues, restless

> body

> > > (ADHD type behavior), and other focus problems at school.

THings

> > > really got bad for her after her bout of viral meningitis this

> > > summer. HBOT has helped some, but not enough to turn her

around.

> > > Should we try again treating her with antibiotics? What about

> > using

> > > several at once--one for lyme, one for the clostridia, etc?

I'm

> > > supposing I should go back to SCD for my older daughter, but

> it's

> > so

> > > much harder as she gets older, especially now that my younger

> one

> > > reacts to nuts and is GFCF (so it's tempting to make the same

> > foods

> > > for both of them).

> > >

> > > I look forwrd to being part of this group.

> > >

> > >

> > >

> > >

> > > **************Make your life easier with all your friends,

email,

> > and

> > > favorite sites in one place. Try it now.

> > > (http://www.aol.com/?optin=new-

> > dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010)

> > >

> >

>