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Hello -

I'm still waiting to hear from Hopkins (1 month now). While I

was hospitalized two weeks ago, they did another MRI on me which showed

that I do have a chiari, and Lord knows I have enough of the symptoms,

just can't get the doctors to listen.

Edith

KY

On Thu, 12 Apr 2001 10:10:54 -0700 (PDT) Jarrett

writes:

> Hello everyone,

>

> Is it just my imagination or are there a lot of us

> sceduled for surgery in the next few weeks?

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Howdy and Everyone,

I am awaiting surgery scheduled for May 16th at 9:00am at Columbia

Regional Hospital with Dr. Oro' in Columbia, Missouri. Good Luck

to all us soon to be ZIPPERHEADS!!!!!

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hi mary,

i'm having surgery may 29th in columbia, missouri with

dr. oro. it does seem to be a lot of people having surgery coming up. maybe it's

spring fever. take care care.

tina in north carolina

(unknown)

Hello Everyone

Is it just my imagination or are there a lot of us set

for surgery in the next few weeks? Maybe its because

mine is set for 4/20 and I'm pretty much focused on

it.

I'm being done at U of P by Dr. Sutton in

Philadelphia. Who else is soon to be done? Where?

When? Who's doing it?

Please know I am not being nosey, just curious as to

who I'll be sharing this experience with.

in Pa.

__________________________________________________

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HI !

I am also having my surgery this month, on the 23rd. I live in Columbus,

Ohio and am having the surgery at Grant Hospital. My nsg's name is Dr.

Larry Armstrong. In my opinion he has got to be one of the best around.

Not just with chiari but just a good person. I guess I have to say he's a

good surgeon.......what else would I say about someone who is going to cut

my head open! LOL

Good luck with your surgery!

Bridget

ACM1 6mm

Surgery set for April 23rd

(unknown)

>Hello Everyone

>Is it just my imagination or are there a lot of us set

>for surgery in the next few weeks? Maybe its because

>mine is set for 4/20 and I'm pretty much focused on

>it.

>I'm being done at U of P by Dr. Sutton in

>Philadelphia. Who else is soon to be done? Where?

>When? Who's doing it?

>

>Please know I am not being nosey, just curious as to

>who I'll be sharing this experience with.

>

> in Pa.

>

>

>__________________________________________________

>

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Hi Bridget!

I am really surprised to find two people from Ohio this week on this site.

I am so happy that this site exists, as I have been diagnosed with a

" :moderate " Chiari 1 Malformation the week before Christmas, and of course,

had never heard of Chiair Malformations. Chip's web site was so educational

for me. Because of web sites like this, I can honestly say that I

understand exactly what Chiari is, but won't know how bad mine is until I

see the nsg on July 2, 2001. I am still in the process of seeing a nsg,

which will now be at the Cleveland Clinic. His name is Dr. Benzel

and he is one of two experts listed there, in the area of Chiari

Malformations. The other Doctor is for children.

I live in Kingston, Ohio, which is approximately 50 miles south of Columbus.

Good luck with both your surgery and 's. Please keep me informed.

Have a great Easter!

Patty

cydrus@...

How did you find your doctor and how many surgery's has he performed?

(unknown)

>

>

> >Hello Everyone

> >Is it just my imagination or are there a lot of us set

> >for surgery in the next few weeks? Maybe its because

> >mine is set for 4/20 and I'm pretty much focused on

> >it.

> >I'm being done at U of P by Dr. Sutton in

> >Philadelphia. Who else is soon to be done? Where?

> >When? Who's doing it?

> >

> >Please know I am not being nosey, just curious as to

> >who I'll be sharing this experience with.

> >

> > in Pa.

> >

> >

> >__________________________________________________

> >

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Hi everyone,

I am also awaiting surgery - May 31 at 9:30am with Dr. Behrmann at Orlando

Regional Medical Center in Orlando, FL. There do seem to be a number of us

having surgery in the next couple of months!!

Anita in Orlando

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  • 2 years later...
Guest guest

Hi there and welcome !! I'm a newbie to this group too, only a week here now and I've found this to be the most friendly and welcoming place ever and the folks here - the best!! You have a shoulder (dozens) and ears, we're here for you!

I can relate to the clotting side of life only too well, first clot which became a PE at age 22 (1985) and just 3 years ago I was diagnosed as a Thrombophiliac, problems continued and I was recently put in the classification of APC-R (activated Protein C Resistance) which could still be attributed to FVL (don't know yet, I see the hemotologist next week), same day I find out about the APC-R I find out (officially) I have secondary Raynaud's Phenomena (which was only found due to extra blood work and symptoms thanks to an astute specialist) and the verdict on Lupus is still coming. Which comes first - the chicken or the egg? heh, that's what has me curious I don't know which has caused what or if they all occured together. for me though the APCR side of it is hereditary and I'm on thinners for life <sigh>.

So girl, if there is anything you want to know or would like to share, I'm sure someone here can help you in one degree or another, either with personal experience or via links and damned good advise once again hon, welcome and remember you aren't alone - get your family to read the posts here too, you'll find it'll help them ... my daughter reads (and giggles at times) over my shoulder but leaves the receiving of all the emails to me, she says - why double up? - typical teen

cheers and hugs from the Land of Oz - Rita

> Hi there. I want to say thank you for the warm welcome and let you know a little about myself. Well I am 19 turning 20 in August and live in upstate/western NY. I was diagnosed in June 2001 with SLE. I had spent the previous 3-4 months thinking that I was insane because they couldn't find anything wrong with me. I lost the use of my arms and legs at times but was determined to get an answer. I went to a Rhumetologist and he told me that it was Lupus. That my ANA and Sed rates showed it. I was shocked and started crying. Over the past 2 years now I have also been diagnosed with Fibromayalgia, Bi Polar, and a mild case of Carpel Tunnel. The reason I found the Lupies website is because I was researching blood clots in people with Lupus. I just

recently found out I have a blood clot from my knee down, which was misdiagnosed as a flare-up at first. I am now on blood thinners and just finished a round of Lovenox shots 2x's a day. I have missed 2 weeks of work and am going crazy laying in> bed all day. My family, my mom in particular, has been terrific but they just don't understand. I have these days that it just seems pointless to get out of bed because I know what joint aches and pains are to come. I guess I wanted to join Lupies is to have a shoulder to cry on from someone who can better understand my pain. So thank you for welcoming me to your group and hope to hear from you soon.>

Yahoo! Mobile

- Check compose your email via SMS on your Telstra or Vodafone mobile.

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  • 3 weeks later...
Guest guest

Welcome Ellen, I hope you enjoy this group as much as I have.

and too all the others who have joined in the past week or two. love Carol

(unknown)

Hi my name is Ellen M or most people just call me LUV.... I have had sle lupus sence the begening of 1998, but I showed many signs long before then. I had a really bad stroke in may of 1998 which took me 2 years to learn how to fully walk again ( at the age of 37). I still suffer from right sided weakness from it. I now suffer from seizures, small TA's, asthyma, shortness of breath, constant leg cramps, constant swelling, sleep apnea, and depression. I am 42 but I often feel like im 82. I am presently taking 17 different meds on a daily basis. I often try to get my doc to take me off of some but he says i need them all. I would love to be able to get off of some of the meds cause i fear that some of my problems are from the meds and not the lupus, but I dont know where to begain. Well I guess thats enough about me. Thank you all for allowing me into your group.Have a super day, LUV ---<---<---{@}

Protect your PC - Click here for McAfee.com VirusScan Online "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

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  • 5 years later...

Hi Akiba! Omg! I am so sorry this is happening. I dont know anyone out

there but just wanted to say im sorry and im praying for you guys. Does

he know someone out there or do you think he could be going somewere

else and just stopping there? I hope not. This is so wrong of him. Did

you speak to him? We are all here for you,on your side in every way. I

wish I could help somehow but please know you never leave my thoughts

and im always praying for you.

lots of luv

cassy

(unknown)

Ok, I am so upset I am shaking. Rob has left his

lover and moved to Hagerstown. If you know anyone in the

Hagerstown/Falling waters/sburg area that I can hole up with for a

few weeks (I can put stuff in storage) PLEASE call me I

should be able to afford a place within a few weeks but for right now I

have to get down there and reclaim my son!!   ~*~ Akiba~*~

~*~Pragmatic Visionary~*~ My husband left me for another psychic I

really should have seen that coming.

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Fortunately, I DO know people there. Lots of them. I have emails and IM's and phone calls out to everyone I can think of...it will be ok...it HAS to be!! Hugs Akiba -- (unknown)Ok, I am so upset I am shaking. Rob has left his lover and moved to Hagerstown. If you know anyone in the Hagerstown/Falling waters/sburg area that I can hole up with for a few weeks (I can put stuff in storage) PLEASE call me I should be able to afford a place within a few weeks but for right now I have to get down there and reclaim my son!!   ~*~ Akiba~*~ ~*~Pragmatic Visionary~*~ My husband left me for another psychic I really should have seen that coming.

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  • 4 months later...
Guest guest
http://en.wikipedia.org/wiki/Kawasaki_disease   Check out this site, Val.It's so great to see you back again! Sorry you are in a flare, hun.You take care sweetie! love, Kate (unknown)To: mserslife > Hello all,<br>>  The past two days have been very hectic around here. My > daughter and her children have been here most of the time. Now, > I'm a little frightened, because my daughter had to take her > youngest (age 2) to the doctor. He came over here with little > bumps all over his torso that looked like, what appeared to be > chicken pox. Now, we have found out that it's not chicken pox, > but Kawasaki disease. Although, he is being treated and taking > meds for his fever, I am afraid of what might happen to me, > having been exposed. I haven't heard of this effecting adults. > My concern in due to the fact that I have MS and my immune > system is out of whack, especially right now. I am having a > flare-up.>  If any of you can give me information to releive my mind, I'd > surely appreciate it.>  > Love and blessings...> Val> > > >   > MS and BPD Awareness> valsafemail@... > Woomail.com/Val  >  > > >
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Don’t know diddly

about Kawasaki, but I know when my son had meningitis, I had to take a course of

preventative antibiotics. Should you call your doc and ask about something

similar?

Fell better soon…

T

in WY

" You get a wonderful view from the point of no return... "

http://practical-blackwork.blogspot.com

http://www.flickr.com/photos/liadains_fancies

(unknown)

Hello all,

The past two days have been very hectic around here.

My daughter and her children have been here most of the time. Now, I'm a

little frightened, because my daughter had to take her youngest (age 2) to

the doctor. He came over here with little bumps all over his torso that

looked like, what appeared to be chicken pox. Now, we have found out that

it's not chicken pox, but Kawasaki disease. Although, he is being treated and

taking meds for his fever, I am afraid of what might happen to me, having

been exposed. I haven't heard of this effecting adults. My concern

in due to the fact that I have MS and my immune system is out of whack,

especially right now. I am having a flare-up.

If any of you can give me information to releive my

mind, I'd surely appreciate it.

Love and blessings...

Val

MS and BPD Awareness

valsafemail@...

Woomail.com/Val

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Thanks Kate,

It's good to see you too. Being around sick children always makes me nervous. Seems like they're always carrying something, and I'm the target. I'm not around my family often, but it seems like when I am, that's usually when they're sick. I'm going to have to have a talk with my daughter and ask her to please make sure her kids are clean and healthy when they come to visit. Of course with her BPD, I'm sure she's going to take complete offense and make it seem that I don't want her and her kids around. LOL

Love and Blessings...

Val

MS and BPD Awareness

valsafemail@...

Woomail.com/Val

Subject: Re: (unknown)To: MSersLife Date: Thursday, March 12, 2009, 10:18 PM

http://en.wikipedia .org/wiki/ Kawasaki_ disease

Check out this site, Val.

It's so great to see you back again! Sorry you are in a flare, hun.

You take care sweetie! love, Kate (unknown)To: mserslife@yahoogrou ps.com> Hello all,<br>> The past two days have been very hectic around here. My > daughter and her children have been here most of the time. Now, > I'm a little frightened, because my daughter had to take her > youngest (age 2) to the doctor. He came over here with little > bumps all over his torso that looked like, what appeared to be > chicken pox. Now, we have found out that it's not chicken pox, > but Kawasaki disease. Although, he is being treated and taking > meds for his fever, I am afraid of what might happen to me, > having been exposed. I haven't heard of this effecting adults. > My concern in due

to the fact that I have MS and my immune > system is out of whack, especially right now. I am having a > flare-up.> If any of you can give me information to releive my mind, I'd > surely appreciate it.> > Love and blessings...> Val> > > > > MS and BPD Awareness> valsafemail@ woomail.com > Woomail.com/ Val > > > >

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Hi ,

I think I'm just going read up on this and see what I find. If I start getting sick, I'll be giving the Dr. a call. For now, I'm just not going to claim anything. :o)

Love and blessings,

Val

MS and BPD Awareness

valsafemail@...

Woomail.com/Val

Subject: RE: (unknown)To: MSersLife Date: Thursday, March 12, 2009, 11:18 PM

Don’t know diddly about Kawasaki, but I know when my son had meningitis, I had to take a course of preventative antibiotics. Should you call your doc and ask about something similar?

Fell better soon…

T

in WY"You get a wonderful view from the point of no return..."http://practical- blackwork. blogspot. comhttp://www.flickr. com/photos/ liadains_ fancies

(unknown)

Hello all,

The past two days have been very hectic around here. My daughter and her children have been here most of the time. Now, I'm a little frightened, because my daughter had to take her youngest (age 2) to the doctor. He came over here with little bumps all over his torso that looked like, what appeared to be chicken pox. Now, we have found out that it's not chicken pox, but Kawasaki disease. Although, he is being treated and taking meds for his fever, I am afraid of what might happen to me, having been exposed. I haven't heard of this effecting adults. My concern in due to the fact that I have MS and my immune system is out of whack, especially right now. I am having a flare-up.

If any of you can give me information to releive my mind, I'd surely appreciate it.

Love and blessings...

Val

MS and BPD Awareness

valsafemail@ woomail.com

Woomail.com/ Val

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Hiya Val,     When I was younger (19), I was dx'd as BPD. I KNOWwhat you mean about how your daughter may take the comment about her kids. Don't make it about her kids,make it about you, ok? Say, I really need to stay well, soI need to stay away from kids and people who are sickor unwell. This way perhaps she won't personalize it toomuch, as that is when the BPD rears it's ugly head. Weget all 'black and white" about things, and think every-one hates us, and our kids...been there, done that...You take care of you, Val. blessings and love,Kate (unknown)> To: mserslife@yahoogrou ps.com> > > Hello all,>  The past two days have been very hectic > around here. My > > daughter and her children have been here most of the time. > Now, > > I'm a little frightened, because my daughter had to take her > > youngest (age 2) to the doctor. He came over here with little > > bumps all over his torso that looked like, what appeared to be > > chicken pox. Now, we have found out that it's not chicken pox, > > but Kawasaki disease. Although, he is being treated and taking > > meds for his fever, I am afraid of what might happen to me, > > having been exposed. I haven't heard of this effecting adults. > > My concern in due to the fact that I have MS and my immune > > system is out of whack, especially right now. I am having a > > flare-up.> >  If any of you can give me information to releive my mind, I'd > > surely appreciate it.> >  > > Love and blessings...> > Val> > > > > > > >   > > MS and BPD Awareness> > valsafemail@ woomail.com > > Woomail.com/ Val  > >  > > > > > > > > > > > > > > > > > > > > > >

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Guest guest

I feel your dilemma - you really want to stay well - but you don't

want to get your daughter mad at you. I agree keep it simple and stay

with " I " statements.

Good Luck

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Guest guest

Thanks Kate!

It's really nice to know someone who knows what I'm talking about. is in denial at this time. Even though she's been diagnosed with BPD, she keeps saying she never was. I know she was, because I was there. The good news is, she has a therapist that goes to her house once a week and spends about an hour with her. She also has to check in with her psych once a month to have her meds monitored. I'll tell ya. As bad as she is with her meds, I am so thankful that she's at least taking them, because she's a thousand times worse without them..

I joined a group several months ago for parents who have children with BPD. I haven't been to it since my 'puter went on the blink. I need to get back on there, I suppose. I'm trying to set an example for my kids. You know, get involved and learn about health issues that effect our loved ones? In all the years that I've had MS, no one in my family has taken the time to find out what it is. And when I tell them anything, they are so indifferent. Maybe when they see that I'm interested in their issues, they just might show a little interest in mine. Of course, I'm not going to hold my breath. LOL

Well, I'll close for now. Again, thank you so much for your input. I really do appreciate it.

Love and blessings...

Val

MS and BPD Awareness

valsafemail@...

Woomail.com/Val

> > > From: katelloydkidz@ optonline. net > Subject: Re: (unknown)> To: MSersLife@yahoogrou ps.com> Date: Thursday, March 12, 2009, 10:18 PM> > > > > > > http://en.wikipedia .org/wiki/ Kawasaki_ disease> Check out this site, Val.> It's so great to see you back again! Sorry you are in a flare, hun.> You take care sweetie! love, Kate> > (unknown)> To: mserslife@yahoogrou ps.com> > > Hello all,> The past two days have been very hectic >

around here. My > > daughter and her children have been here most of the time. > Now, > > I'm a little frightened, because my daughter had to take her > > youngest (age 2) to the doctor. He came over here with little > > bumps all over his torso that looked like, what appeared to be > > chicken pox. Now, we have found out that it's not chicken pox, > > but Kawasaki disease. Although, he is being treated and taking > > meds for his fever, I am afraid of what might happen to me, > > having been exposed. I haven't heard of this effecting adults. > > My concern in due to the fact that I have MS and my immune > > system is out of whack, especially right now. I am having a > > flare-up.> > If any of you can give me information to releive my mind, I'd > > surely appreciate it.> > > > Love

and blessings...> > Val> > > > > > > > > > MS and BPD Awareness> > valsafemail@ woomail.com > > Woomail.com/ Val > > > > > > > > > > > > > > > > > > > > > > > >

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Thanks. I think you're right.

Love and blessings...

Val

MS and BPD Awareness

valsafemail@...

Woomail.com/Val

Subject: Re: (unknown)To: MSersLife Date: Friday, March 13, 2009, 12:16 PM

I feel your dilemma - you really want to stay well - but you don't want to get your daughter mad at you. I agree keep it simple and stay with "I" statements.Good Luck

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Take care Val, don't feel bad for taking care of yourself. I worry

every time my kids get sick.

Jolie

> Thanks. I think you're right.

>

> Love and blessings...

> Val

>

>

>

>

> MS and BPD Awareness

> valsafemail@...

> Woomail.com/Val

>

>

>

>

>

>

> Subject: Re: (unknown)

> To: MSersLife

> Date: Friday, March 13, 2009, 12:16 PM

>

>

>

>

>

>

>

> I feel your dilemma - you really want to stay well - but you don't

> want to get your daughter mad at you. I agree keep it simple and stay

> with " I " statements.

>

> Good Luck

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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  • 2 months later...
Guest guest

Got it.

Love,

n

To: ; candykane64@...; hollyhollyo36@...; Jackie H ; ; mserslife Sent: Monday, June 8, 2009 12:26:43 PMSubject: (unknown)

  ~*~ Akiba~*~

~*~Pragmatic Visionary~*~

The World revolves aroung the Sun

My World revolves around My Son

When I grow up I want to be a philanthropist

Beautiful Salt lamps and Salt products:

http://www.affiliat es-natural- salt-lamps. com/pages/ 156.php

Giving Up ChocolateI was walking down the street when I was accosted by a particularly dirty and shabby-looking homeless woman who asked me for a couple of dollars for dinner. I took out my wallet, got out ten dollars and asked, 'If I give you this money, will you buy chocolate with it instead of dinner?' 'No, I had to stop eating chocolate years ago', the homeless woman told me.'Will you use it to go shopping instead of buying food?' I asked.'No, I don't waste time shopping,' the homeless woman said. 'I need to spend all my time trying to stay alive.''Will you spend this on a beauty salon instead of food?' I asked.'Are you NUTS!' replied the homeless woman. I haven't had my hair done in 20 years!''Well, I said, 'I'm not

going to give you the money. Instead, I'm going to take you out for dinner with my husband and me tonight.'The homeless Woman was shocked. 'Won't your husband be furious with you for doing that? I know I'm dirty, and I probably smell pretty disgusting.' I said, 'That's okay. It's important for him to see what a woman looks like after she has given up shopping, hair appointments, and chocolate.' I just know you're laughing!

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ROFLMHO! (unknown)To: , candykane64@..., hollyhollyo36@..., Jackie H , Katt , , , mserslife > > > > > > > > > > >   ~*~ Akiba~*~ > > ~*~Pragmatic Visionary~*~> > The World revolves aroung the Sun> > My World revolves around My Son> > When I grow up I want to be a philanthropist> > Beautiful Salt lamps and Salt products:> > http://www.affiliates-natural-salt-lamps.com/pages/156.php> > > > > > Giving Up Chocolate> > > > I was walking down the street when I was accosted by a > particularly dirty> and shabby-looking homeless woman who asked me for a couple of > dollars for> dinner. > > > > I took out my wallet, got out ten dollars and asked, 'If I give > you this> money, will you buy chocolate with it instead of dinner?' > > > > 'No, I had to stop eating chocolate years ago', the homeless > woman told me.> > > > 'Will you use it to go shopping instead of buying food?' I asked.> > > > 'No, I don't waste time shopping,' the homeless woman said. 'I > need to spend> all my time trying to stay alive.'> > > > 'Will you spend this on a beauty salon instead of food?' I asked.> > > > 'Are you NUTS!' replied the homeless woman. I haven't had my > hair done in 20> years!'> > > > 'Well, I said, 'I'm not going to give you the money. Instead, > I'm going to> take you out for dinner with my husband and me tonight.'> > > > The homeless Woman was shocked. 'Won't your husband be furious > with you for> doing that? I know I'm dirty, and I probably smell pretty > disgusting.' > > > > I said, 'That's okay. It's important for him to see what a woman > looks like> after she has given up shopping, hair appointments, and > chocolate.' > > > > I just know you're laughing!> > > > > > > > > > > > > > > > > > > > >

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  • 1 year later...

Interesting you say that as the Amish are known not to vaccinate http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5530a1.htmThere was some controversy after Olmstead book that things have changed with the Amish etc (as he alleges a low autism and low vaccination rate in the Amish) regarding vaccination but I would be curious if anybody knows a more recent update on thisTo: mb12 valtrex Sent: Mon, September 20, 2010 12:23:05 PMSubject: (unknown)

I would love to read that book. I have read a few other things online by Olmstead, I believe he is the one that talks about the rate of Autism being almost nonexistent among Amish communities.

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I watched a special the other week on "The Amish Way of Life" and they still don't vaccinate, don't use our medicine, don't do health care or Medicare. They handle all that, including birthing in their community.nancy j

working towards recovery

searching for a cureSubject: Re: (unknown)To: mb12 valtrex Date: Monday, September 20, 2010, 3:52 PM

Interesting you say that as the Amish are known not to vaccinate http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5530a1.htmThere was some controversy after Olmstead book that things have changed with the Amish etc (as he alleges a low autism and low vaccination rate in the Amish) regarding vaccination but I would be curious if anybody knows a more recent update on thisFrom: sarah soriano

To: mb12 valtrex Sent: Mon, September 20, 2010 12:23:05 PMSubject: (unknown)

I would love to read that book. I have read a few other things online by Olmstead, I believe he is the one that talks about the rate of Autism being almost nonexistent among Amish communities.

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Thanks Cheryl.

What are AC counting rules?

Attached a diff file. Hope you can read it.

He is so high in so many things.

Does getting the minerals in control help with ASD.

I am so new to all of this, I have not clue.

Thanks

My son's lead seems to be way to high.

Who should I contact medically apart from my DAN.

Not able to reach my DAN. I have attached my son's report.

Can someone throw some ideas?

Thanks

1 of 1 Photo(s)

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Thanks Cheryl.

What are AC counting rules?

Attached a diff file. Hope you can read it.

He is so high in so many things.

Does getting the minerals in control help with ASD.

I am so new to all of this, I have not clue.

Thanks

My son's lead seems to be way to high.

Who should I contact medically apart from my DAN.

Not able to reach my DAN. I have attached my son's report.

Can someone throw some ideas?

Thanks

1 of 1 Photo(s)

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