Re: official diagnosis- a story l have to share..

December 19, 2009

Marguerite,Let me first of all, congratulate you for being such a loving, persistent, intelligent mom and getting good results with your kid. I am on american soil right now and just met a friend of my sister's (45yo woman) whose clinical tests were all +++ for lyme. She is very disappointed because the diagnose has only been good for one thing: people at work calling her "a tale teller", "trying to get retirement, cuz she is lazy", etc... :-( my heart is broken from hearing her story, how her eyes pour tears when she now tells me how she drags herself to work everyday plagued by exhaustion and pain (apparently the sickness has attacked her musculo-skeletical system directly). I know this doesn't seem to address your question whether getting an official diagnosis for your little boy could be helpful or not, in my opinion, you have to get the support of an MD who is on the big leagues and whose opinion won't get refuted so easily. I would also try to handle it discreetly, our kids not only suffer enough discrimination due to autistic behaviors, people is often so ignorant that they think lyme can be transmitted from our kids while playing w others. I think Heidi's suggestion about getting an official diagnosis which is "accepted" by insurances, people, etc could be more helpful for the future. Can you believe when this friend tried to explain to her boss about her medical condition he said: "stop telling me gipsy tales and remember there is a lot of work to get done before l re-arrange your contract for next year!"-----conclusion: one more example of how an official diagnose has only made the road much more difficult...With blessings,IsaPS: our friend didn't know that there are options to treat lyme others than ABX, as she said good bye she was happy and had a new ray of hope :-) made my good deed of the day!Enviado desde mi oficina móvil BlackBerry® de TelcelDate: Thu, 17 Dec 2009 15:38:37 -0500To: <BorreliaMultipleInfectionsAndAutism >Subject: official diagnosis A few more questions for those of you with experience in thesanctioned and non-sanctioned medical community. Is getting an officialdiagnosis helpful or no different when selecting intervention methods? I believe my 2 year old son is moderately autistic, mildlyretarded, and likely infected with Lyme. The doctors had concerns abouthis development from the day he was born. This was due to a large number(and types) of birthmarks and the size of his head (off the chart huge). His development is closely watched by CHKD, a large reputable children’shospital in VA. They are doing a bunch of genetic work and monitoring suchas MRIs and Ultrasounds (which to me is almost pointless because it hasexplained nothing). My son started receiving PT at 11 months due to gross motordelay. When his MCHAT indicated serious concerns with autism symptoms wealso started therapy with an educational specialist and OT. I changedhis diet over 8 months ago (GFCF and now specific carb diet). Because of myresearch of his behavioral symptoms (and in agreement with his therapists) that’show I’ve concluded autism and MR. We are now working with a DANdoctor who provides excellent blood work tests and supplements. I’mcurrently investigating the Son-rise program for intervention with socialintegration problems. Also 8 months ago we started working with anothernutritionist who conducted a live blood analysis. What she saw in hisblood was the same as other clients of hers who tested positive for Lyme. His Western Blot test came back negative, but positive on the K41 band (we allknow how reliable the WB test is). Our hypothesis (nutritionist and me) ishe was infected by me during pregnancy. We can’t figure any otherpossibilities. If I have Lyme I am asymptomatic. However, I had tons oftick bites as a child and teen who lived in the countryside. So we think this bacteria could have been the trigger for acascade of events leading to birthmarks (affected by nerve development), lowmuscle tone, head size off the chart, and autistic behaviors. We’vebeen working on his biological issues for a number of months now (detox, diet,nutrition) but just starting on the journey of “attacking” thebacteria. Our first Zyto scan is in two weeks and I hope it will providemore insight. Good news – We are seeing positive results from ourefforts. Our kid is steadily improving and I have hopes for a significantrecovery. Back to the original question – is getting an officialdiagnosis of autism/MR and Lyme disease of any value? From what I’veheard, the officiators (MDs) of the prognoses rarely provide help or insight. Plus I’m tired of visiting more doctors and we don’t have abottomless bank account. Thanks for reading this… Marguerite

December 19, 2009

Thank you Heidi and Isa for your terrific advice. I’ll

keep looking for a doctor who will take the Lyme symptoms seriously. There is

an MD here in Hampton Roads who specifically treats kids with Lyme.

Unfortunately she booked for the next two years… I’ll also look

into getting Roman’s Autism diagnoses. I think I’m mentally ready

to handle it. Whew, life is always interesting…

From: BorreliaMultipleInfectionsAndAutism

[mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of isaguzmandiaz2@...

Sent: Saturday, December 19, 2009 6:40 AM

To: BorreliaMultipleInfectionsAndAutism

Subject: Re: official diagnosis- a

story l have to share..

Marguerite,

Let me first of all, congratulate you for being such a loving, persistent,

intelligent mom and getting good results with your kid. I am on american soil

right now and just met a friend of my sister's (45yo woman) whose clinical

tests were all +++ for lyme. She is very disappointed because the diagnose has

only been good for one thing: people at work calling her " a tale teller " ,

" trying to get retirement, cuz she is lazy " , etc... :-( my heart is

broken from hearing her story, how her eyes pour tears when she now tells me

how she drags herself to work everyday plagued by exhaustion and pain

(apparently the sickness has attacked her musculo-skeletical system directly).

I know this doesn't seem to address your question whether getting an official

diagnosis for your little boy could be helpful or not, in my opinion, you have

to get the support of an MD who is on the big leagues and whose opinion won't

get refuted so easily. I would also try to handle it discreetly, our kids not

only suffer enough discrimination due to autistic behaviors, people is often so

ignorant that they think lyme can be transmitted from our kids while playing w

others. I think Heidi's suggestion about getting an official diagnosis which is

" accepted " by insurances, people, etc could be more helpful for the

future. Can you believe when this friend tried to explain to her boss about her

medical condition he said: " stop telling me gipsy tales and remember there

is a lot of work to get done before l re-arrange your contract for next

year! " -----conclusion: one more example of how an official diagnose has

only made the road much more difficult...

With blessings,

Isa

PS: our friend didn't know that there are options to treat lyme others than

ABX, as she said good bye she was happy and had a new ray of hope :-) made my

good deed of the day!

Enviado desde mi oficina móvil BlackBerry® de Telcel

Date: Thu, 17 Dec 2009 15:38:37 -0500

To: <BorreliaMultipleInfectionsAndAutism >

Subject:

official diagnosis

A

few more questions for those of you with experience in the sanctioned and

non-sanctioned medical community. Is getting an official diagnosis

helpful or no different when selecting intervention methods?

I

believe my 2 year old son is moderately autistic, mildly retarded, and likely

infected with Lyme. The doctors had concerns about his development

from the day he was born. This was due to a large number (and types) of

birthmarks and the size of his head (off the chart huge). His

development is closely watched by CHKD, a large reputable children’s

hospital in VA. They are doing a bunch of genetic work and monitoring

such as MRIs and Ultrasounds (which to me is almost pointless because it has

explained nothing).

My

son started receiving PT at 11 months due to gross motor delay. When his

MCHAT indicated serious concerns with autism symptoms we also started therapy

with an educational specialist and OT. I changed his diet over 8

months ago (GFCF and now specific carb diet). Because of my research of

his behavioral symptoms (and in agreement with his therapists) that’s how

I’ve concluded autism and MR. We are now working with a DAN doctor

who provides excellent blood work tests and supplements. I’m

currently investigating the Son-rise program for intervention with social

integration problems.

Also

8 months ago we started working with another nutritionist who conducted a live

blood analysis. What she saw in his blood was the same as other clients

of hers who tested positive for Lyme. His Western Blot test came back

negative, but positive on the K41 band (we all know how reliable the WB test

is). Our hypothesis (nutritionist and me) is he was infected by me during

pregnancy. We can’t figure any other possibilities. If I have Lyme I am

asymptomatic. However, I had tons of tick bites as a child and teen who

lived in the countryside.

So

we think this bacteria could have been the trigger for a cascade of events

leading to birthmarks (affected by nerve development), low muscle tone, head

size off the chart, and autistic behaviors. We’ve been working on

his biological issues for a number of months now (detox, diet, nutrition) but

just starting on the journey of “attacking” the bacteria. Our

first Zyto scan is in two weeks and I hope it will provide more insight.

Good

news – We are seeing positive results from our efforts. Our kid is

steadily improving and I have hopes for a significant recovery.

Back

to the original question – is getting an official diagnosis of autism/MR

and Lyme disease of any value? From what I’ve heard, the officiators

(MDs) of the prognoses rarely provide help or insight. Plus I’m

tired of visiting more doctors and we don’t have a bottomless bank

account.

Thanks

for reading this…

Marguerite

December 19, 2009

I agree with both Heidi & Isa. People are so inclined to brush off undocumented

diagnosis....but don't stop at the diagnosis. Put it in the positive, not the

negative they will leave you with. Get the ASD diagnosis documented then move

beyond it with the knowledge this group shares. As you move forward with your

parental love & persistenace (many times you can not share that with anyone but

this & like groups, including friends & family...they'll just knock what you are

doing...but your persistance to see you & your child do better will move you

beyond the diagnosis). Stepping outside the standard critism, learning to just

brush it off and give yourself & others the grace to move on dispite your

difference will be the foundation of your healing.

Just want to take the opportunity to share what I have just been through with my

own family. They have not believed in what we are doing...it came to a head

recently when my dad (whom I love, but is VERY allopathic) confronted me about

my irresponible parenting for not vaccinating with the flu/swine flu....). I've

learned to keep my mouth shut because I've learned it's more healthy to me than

arguing with people that will never listen to the alternatives....I choose my

battles and the energy they steal from me. Recognising these is huge to

me...these confrontations steal energy from you & your healing. You come to a

point that you recognise that you will not always change some peoples minds and

you learn to discern what flushes your " toilet " (drains you & the crap) and what

fills your " tank " (fills you up with cleaner things)....so to say.

Just to let you know....my dad & I are still brushing our crumbs under the rug,

as i try to maintain what I feel is best for my child (his remarkable recovery

shows to everyone...some just say he's growing up because they CHOOSE not to see

this healing is more than just " growing out of it " & dwell on the negative that

they still see. But out of the Love & Respect I try to maintain to keep my

surrounding relationships healthy.

Christian Content Disclaimer.

The below has Christian Content. If this offends, do not read Further as the

balance is personal & Christian based:

Just to share the latest exchange....in hopes that it will help some of you

dealing with family differences this season. I've been working on heritage

scrapbooks. Every year for Christmas I spend many hours doing Heritage pages for

family Christmas presents. It's a lower cost, higher effort way for me to build

family Heritage. I started my dad's side this year (only remaining parent on

both sides of the family)....so we've been working extra on family stuff

together.

He sent me a note and at the end it said, " We may not always agree, but just

want you to know that you're still my daughter & I love you. Dad "

An excerpt to what I just sent him back:

" Thank you also for your note, parental caring & love for me and my family. I

agree that we don't agree with everything, and that's ok. We do agree in the

most important things in life. I value the Love we share for God our Heavenly

Father, his Son Jesus Christ, and our respect and desire to follow His Word the

Holy Bible. Following this is our Love for our families. With our sharing these

two things, Grace for everything else less important will carry our families

Love & Unity for the important things into eternity were we will no longer

struggle with the hardships of this life. "

If your family does not believe in God...remove the God part and go straight to

GRACE FOR EVERYTHING ELSE....as this statement can be very healing as you move

outside the differences into caring for the whole person.

Wishing you Many Christmas Blessings!!!

Rita

>

> Marguerite,

> Let me first of all, congratulate you for being such a loving, persistent,

intelligent mom and getting good results with your kid. I am on american soil

right now and just met a friend of my sister's (45yo woman) whose clinical tests

were all +++ for lyme. She is very disappointed because the diagnose has only

been good for one thing: people at work calling her " a tale teller " , " trying to

get retirement, cuz she is lazy " , etc... :-( my heart is broken from hearing

her story, how her eyes pour tears when she now tells me how she drags herself

to work everyday plagued by exhaustion and pain (apparently the sickness has

attacked her musculo-skeletical system directly). I know this doesn't seem to

address your question whether getting an official diagnosis for your little boy

could be helpful or not, in my opinion, you have to get the support of an MD who

is on the big leagues and whose opinion won't get refuted so easily. I would

also try to handle it discreetly, our kids not only suffer enough

discrimination due to autistic behaviors, people is often so ignorant that they

think lyme can be transmitted from our kids while playing w others. I think

Heidi's suggestion about getting an official diagnosis which is " accepted " by

insurances, people, etc could be more helpful for the future. Can you believe

when this friend tried to explain to her boss about her medical condition he

said: " stop telling me gipsy tales and remember there is a lot of work to get

done before l re-arrange your contract for next year! " -----conclusion: one more

example of how an official diagnose has only made the road much more

difficult...

> With blessings,

> Isa

> PS: our friend didn't know that there are options to treat lyme others than

ABX, as she said good bye she was happy and had a new ray of hope :-) made my

good deed of the day!

> Enviado desde mi oficina móvil BlackBerry® de Telcel

>

> official diagnosis

>

> A few more questions for those of you with experience in the sanctioned and

> non-sanctioned medical community. Is getting an official diagnosis helpful

> or no different when selecting intervention methods?

>

> I believe my 2 year old son is moderately autistic, mildly retarded, and

> likely infected with Lyme. The doctors had concerns about his development

> from the day he was born. This was due to a large number (and types) of

> birthmarks and the size of his head (off the chart huge). His development

> is closely watched by CHKD, a large reputable children's hospital in VA.

> They are doing a bunch of genetic work and monitoring such as MRIs and

> Ultrasounds (which to me is almost pointless because it has explained

> nothing).

>

> My son started receiving PT at 11 months due to gross motor delay. When his

> MCHAT indicated serious concerns with autism symptoms we also started

> therapy with an educational specialist and OT. I changed his diet over 8

> months ago (GFCF and now specific carb diet). Because of my research of his

> behavioral symptoms (and in agreement with his therapists) that's how I've

> concluded autism and MR. We are now working with a DAN doctor who provides

> excellent blood work tests and supplements. I'm currently investigating the

> Son-rise program for intervention with social integration problems.

>

> Also 8 months ago we started working with another nutritionist who conducted

> a live blood analysis. What she saw in his blood was the same as other

> clients of hers who tested positive for Lyme. His Western Blot test came

> back negative, but positive on the K41 band (we all know how reliable the WB

> test is). Our hypothesis (nutritionist and me) is he was infected by me

> during pregnancy. We can't figure any other possibilities. If I have Lyme I

> am asymptomatic. However, I had tons of tick bites as a child and teen who

> lived in the countryside.

>

> So we think this bacteria could have been the trigger for a cascade of

> events leading to birthmarks (affected by nerve development), low muscle

> tone, head size off the chart, and autistic behaviors. We've been working

> on his biological issues for a number of months now (detox, diet, nutrition)

> but just starting on the journey of " attacking " the bacteria. Our first

> Zyto scan is in two weeks and I hope it will provide more insight.

>

> Good news - We are seeing positive results from our efforts. Our kid is

> steadily improving and I have hopes for a significant recovery.

>

> Back to the original question - is getting an official diagnosis of

> autism/MR and Lyme disease of any value? From what I've heard, the

> officiators (MDs) of the prognoses rarely provide help or insight. Plus I'm

> tired of visiting more doctors and we don't have a bottomless bank account.

>

> Thanks for reading this.

>

> Marguerite

>

December 19, 2009

Hi Rita,

Thanks for the advice (both parts). I have the good fortune of

very supportive parents when it comes to alternative medicine. My husband

actually says, “you are acting like your mom”. He’s

basically saying I’m going off the deep end. He’s a bit wary but

hasn’t stopped me from doing what I felt was important.

My dad was diagnosed with fibrosis in the lungs a couple of

years ago. They said he had about a year to live and nothing could be done

about it. The fibrosis would continue expanding. (It was the main cause of

his mother’s death about five years ago.) Anyway, he and mom worked with

a DO in FL that reversed the condition.

They conducted a bio-frequency scan (not sure which kind) and

then treated the condition with another frequency tool. Forgive my ignorance on

the technical explanation…the treatment machine destroyed the invading

parasite in the lung by zapping it with its own resonance frequency. Apparently

the death of one bacteria just exposed more, so they had to be “zapped”

too. He had a number of treatments performed over 3 days and then returned

home with supplemental support.

My dad was using a oxygen machine a few times and day and had no

energy or brain power to do anything. Now he’s starting to feel normal

again physically and mentally. No oxygen or having to pace himself, etc…

Scans show the fibrosis has dissipated extensively (if not completely, can’t

remember). So he’s not going to die, from fibrosis that is.

I say all this because mom really wants me to take my son to see

this doctor. Apparently he’s treated lyme and kids with autism with

positive results. Not sure if its kids with both.

I’ll admit I’m hesitant. If this machine can really

target and kill the Borrelia on the spot, then how to we manage the huge toxic

load?

If anyone has heard of this treatment before or has some

insight, I’d be very interested.

Marguerite

From:

BorreliaMultipleInfectionsAndAutism

[mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of childbalance

Sent: Saturday, December 19, 2009 3:36 PM

To: BorreliaMultipleInfectionsAndAutism

Subject: Re: official diagnosis- a

story l have to share..

I agree with both Heidi & Isa. People are

so inclined to brush off undocumented diagnosis....but don't stop at the

diagnosis. Put it in the positive, not the negative they will leave you with.

Get the ASD diagnosis documented then move beyond it with the knowledge this

group shares. As you move forward with your parental love & persistenace (many

times you can not share that with anyone but this & like groups, including

friends & family...they'll just knock what you are doing...but your

persistance to see you & your child do better will move you beyond the

diagnosis). Stepping outside the standard critism, learning to just brush it

off and give yourself & others the grace to move on dispite your difference

will be the foundation of your healing.

Just want to take the opportunity to share what I have just been through with

my own family. They have not believed in what we are doing...it came to a head

recently when my dad (whom I love, but is VERY allopathic) confronted me about

my irresponible parenting for not vaccinating with the flu/swine flu....). I've

learned to keep my mouth shut because I've learned it's more healthy to me than

arguing with people that will never listen to the alternatives....I choose my

battles and the energy they steal from me. Recognising these is huge to

me...these confrontations steal energy from you & your healing. You come to

a point that you recognise that you will not always change some peoples minds

and you learn to discern what flushes your " toilet " (drains you &

the crap) and what fills your " tank " (fills you up with cleaner

things)....so to say.

Just to let you know....my dad & I are still brushing our crumbs under the

rug, as i try to maintain what I feel is best for my child (his remarkable

recovery shows to everyone...some just say he's growing up because they CHOOSE

not to see this healing is more than just " growing out of it " &

dwell on the negative that they still see. But out of the Love & Respect I

try to maintain to keep my surrounding relationships healthy.

Christian Content Disclaimer.

The below has Christian Content. If this offends, do not read Further as the

balance is personal & Christian based:

Just to share the latest exchange....in hopes that it will help some of you

dealing with family differences this season. I've been working on heritage

scrapbooks. Every year for Christmas I spend many hours doing Heritage pages

for family Christmas presents. It's a lower cost, higher effort way for me to

build family Heritage. I started my dad's side this year (only remaining parent

on both sides of the family)....so we've been working extra on family stuff together.

He sent me a note and at the end it said, " We may not always agree, but

just want you to know that you're still my daughter & I love you. Dad "

An excerpt to what I just sent him back:

" Thank you also for your note, parental caring & love for me and my

family. I agree that we don't agree with everything, and that's ok. We do agree

in the most important things in life. I value the Love we share for God our

Heavenly Father, his Son Jesus Christ, and our respect and desire to follow His

Word the Holy Bible. Following this is our Love for our families. With our

sharing these two things, Grace for everything else less important will carry

our families Love & Unity for the important things into eternity were we

will no longer struggle with the hardships of this life. "

If your family does not believe in God...remove the God part and go straight to

GRACE FOR EVERYTHING ELSE....as this statement can be very healing as you move

outside the differences into caring for the whole person.

Wishing you Many Christmas Blessings!!!

Rita

>

> Marguerite,

> Let me first of all, congratulate you for being such a loving, persistent,

intelligent mom and getting good results with your kid. I am on american soil

right now and just met a friend of my sister's (45yo woman) whose clinical

tests were all +++ for lyme. She is very disappointed because the diagnose has

only been good for one thing: people at work calling her " a tale

teller " , " trying to get retirement, cuz she is lazy " , etc... :-(

my heart is broken from hearing her story, how her eyes pour tears when she now

tells me how she drags herself to work everyday plagued by exhaustion and pain