Hi i'm new here

[Guest guest]

> She has been on SCD for about 8 weeks and that is helping a lot.

> However, we are struggling a lot with constipation,

Constipation ideas

http://www.danasview.net/constip.htm

>>reflux

This is commonly caused by food intolerance.

and

> sleeping.

This is commonly caused by phenol intolerance or yeast overgrowth.

Since you are doing SCD, first consider phenol intolerance

http://www.danasview.net/phenol.htm

>>I am nervous about trying enzymes because she reacts to

> EVERYTHING!!!!!

Start with low dose of the SCD version of HNI enzymes, see if that helps

http://www.houstonni.com/

Dana

[Guest guest]

>

> Dana,

> Thank you for responding. My daughter is not eating any high phenol

foods, she is only on pears, chicken, avocados and squash because she

is so reactive to foods.

Avocados and certain varieties of squash are high phenol.

> I can't seem to find a vitamin C that is buffered with something

other than calcium carbonate

Try TwinLabs Allergy C, which might help even if unbuffered.

>>She is currently on 500mg of magnesium glycinate.

Try increasing this, maybe to 800mg.

> Which is the SCD version enzyme at Houston Nutraceuticals?

The version without rice bran

http://www.houstonni.com/

Dana

[Guest guest]

Hello and welcome to the group! I hope someone in the group more

qualified than me will give you their opinion, but for what it's

worth here's mine....

I would not be afraid to try the LDN. For one thing, it is a tiny

dose. Your ND may view it much like a homeopathic remedy,

prescribing a small dose to encourage your body to balance itself.

I am glad he/she is forward-thinking enough to suggest you try LDN!

I believe that you will benefit from it. I realize you've been

through so much that you're a little confused and aren't sure what's

causing what, but the LDN will help to balance and strengthen your

immune system, which could have a profound effect on any of those

things you listed. My daughter has MS and does have the

numbness/tingling, but it is my understanding that those can be

symptoms of other conditions as well. I truly hope you don't have

MS, but it often takes awhile to get a diagnosis, so you never know.

I'm wondering if your ND has ever mentioned trying natural

hormones. That's another subject, though. I say go for it on the

LDN and I wish you all the best.

Beach

[Guest guest]

>

> Hello and welcome to the group! I hope someone in the group more

> qualified than me will give you their opinion, but for what it's

> worth here's mine....

>

> I would not be afraid to try the LDN. For one thing, it is a tiny

> dose. Your ND may view it much like a homeopathic remedy,

> prescribing a small dose to encourage your body to balance itself.

> I am glad he/she is forward-thinking enough to suggest you try

LDN!

> I believe that you will benefit from it. I realize you've been

> through so much that you're a little confused and aren't sure

what's

> causing what, but the LDN will help to balance and strengthen your

> immune system, which could have a profound effect on any of those

> things you listed. My daughter has MS and does have the

> numbness/tingling, but it is my understanding that those can be

> symptoms of other conditions as well. I truly hope you don't have

> MS, but it often takes awhile to get a diagnosis, so you never know.

>

> I'm wondering if your ND has ever mentioned trying natural

> hormones. That's another subject, though. I say go for it on the

> LDN and I wish you all the best.

> Beach

>

I think one of the reasons she is trying the LDN is that I can't even

seem to tolerate natural hormones. My adrenals are extremely

exhausted and I've become so sensitive to everything. I am picking

up my RX tomorrow but I'm hoping for more feedback. I've had

symptoms resmebling MS, Lupus and Fibromyalgia for several years but

all tests always come out very clear. Thank you so much for the

feedback.

How long does it take to have a diagnosis of MS? I have had several

brain MRI's that are always completely normal...not a lesion in sight.

My symptoms also resemble Lyme disease. It's been a mystery for

quite some time and it is affecting me psychologically now. No

doctor can find a reason for the lasting and very disturbing

situation I've gone through.

Does LDN help with extreme tinnitus?

Thanks so much,

Turtleshoes

[Guest guest]

Hello again,

I still would encourage you to have confidence in trying the LDN.

One thing I think would help you not only organize your thoughts but

also communicate more clearly with the docs is to get a pocket

planner and jot down a few notes every day on how you feel. Don't

just include symptoms, though those are important. Also note things

that seem better, etc. Keep track of when you start the LDN and

what dose you're on, too. It's sometimes difficult to see progress

clearly day to day and having a " snapshot " view can be helpful in

letting you see how things are going over a longer period.

It's hard to make a blanket statement and say that LDN helps

tinnitus when you don't know the cause. Tinnitus can have many

causes, one being anxiety! So, I say try to relax, eat well, keep a

journal of your symptoms, meds, changes, etc., and see what

happens. If you do have an autoimmune thing going on then you're

definitely on the right track with the LDN. Don't give up getting

this thing figured out - try another doctor/specialist and keep

trying if you're not being given the attention you need. I wish you

all the best.

Beach

[Guest guest]

Turtleshoes,

I have brain lesions and had an awful lot of MS symptoms, so much

that a friend with MS and my drs. thought I was in denial (lots of

drs). Well, not everything fell under that heading. Anyway, I have

since seen a LLMD and tested thru IGeneX, and diagnosed with Lyme and

all my symptoms and all my diagnoses do fall under that heading.

I learned about the LLMD, IGeneX, and lots of Lyme info from my

friend with MS who happened to find out after I was diag with Lyme,

that she actually has Lyme.

jan

>

>

> I think one of the reasons she is trying the LDN is that I can't

even

> seem to tolerate natural hormones. My adrenals are extremely

> exhausted and I've become so sensitive to everything. I am picking

> up my RX tomorrow but I'm hoping for more feedback. I've had

> symptoms resmebling MS, Lupus and Fibromyalgia for several years

but

> all tests always come out very clear. Thank you so much for the

> feedback.

>

> How long does it take to have a diagnosis of MS? I have had

several

> brain MRI's that are always completely normal...not a lesion in

sight.

> My symptoms also resemble Lyme disease. It's been a mystery for

> quite some time and it is affecting me psychologically now. No

> doctor can find a reason for the lasting and very disturbing

> situation I've gone through.

>

> Does LDN help with extreme tinnitus?

>

> Thanks so much,

> Turtleshoes

>

[Guest guest]

Sorry to hear that you do not know for sure in time they will figure it outturtleshoes41 <turtleshoes41@...> wrote: Hello,My ND just prescribed me LDN for severe pain and tingling of no cause. I've been to several neurologists and have had MRI's, CAT scans and blood work to determine if I have any autoimmune disorder. They cannot find anything. I've also had Nerve Conduction Studies...EEG's all coming out normal.I've been through a benzodiazepine withdrwal and currently going through another withdrawal. These symptoms started with a cold turkey withdrawal I had a year and a half ago, along with Tinnitus and muscle twitching.I am wondering, since I am always fatigued and have had a bad

bout with Epstien Barr virus about 15 years ago, if LDN will help me with these problems. I've been reading about numbness and am wondering if this just happens with MS patients.I am doing a slow taper off of klonopin and it's getting worse daily.I'm sorry if I sound ignorant but I don't know much about this and would like all the info I can get before starting this medication.I am 5 feet tall and about 108 pounds. I've been rx'd 3mg at bedtime from my local compounding pharmacy. I'm a little scared right now to put something new into my body.I had a complete hysterectomy about 3 1/2 years ago and about 3 months after that is when all my problems started which I think were side effects or nerve damage from other medications.Can LDN help me?ThanksTurtleshoes------------------------------------

[Guest guest]

My daughter is almost 5 years old and has autism/apraxia. She is taking

fish oil omega 369 1/2 tsp twice a day, but i hear about vitamin E and

havent tried that does anyone know if i need to order this online? I

hear about vitamin K helping as well? Does anyone know all the

supplements to help with apraxia and dosage? We only see a

developmental pedi which checks my daughters zinc/copper levels that

was it so i was wondering what else i can give her to help? I noticed a

lot of change in her speech when giving her vitamin c and zinc

prescribed from her dev pedi. Any help i appreciate and nice to meet

all of you.

[Guest guest]

Well I am not surprised. People don't seem to like to talk much

about there own strengths and weaknesses. You might like to talk to a therapist,

they would allow you to talk about this subject.

I found that was the only place I could really talk over issues

about my life too. It really helped. Because this was a need I had

to talk about my daughter's Asperger and to talk about my social

anxiety. And to talk about how these issues affected out lives.

Once you have this need met to talk about your DX it may not

be necessary to tell people of it.

I use to feel resentful that my family didn't want to help

me talk over all the issues I had to deal with my daughter

but now I don't care. I have our therapist and this group.

Pam

aniu

>

> Hi. I'm new on this group. I am 49 & only learned I have Asperger's 2 years

ago. Sometimes when I tell people this they don't believe me. I have a " standard

response " of " that's because we try so hard to act like we don't have it. " I'm

tired of that response though... any ideas? At first I wouldn't tell anyone &

didn't want to talk about it. Now I just wish when I did they'd even care to

understand it a little bit. Oh well. Thanks for being here.

>

[Guest guest]

It is frustrating as a parent too. Many times we would get the response, "But he looks so normal." I know these people are trying to be nice but it stings a little. Be proud of your diversity.

From: sybeve <sybeve@...> Sent: Monday, September 28, 2009 3:12:13 PMSubject: ( ) Hi I'm new here

Hi. I'm new on this group. I am 49 & only learned I have Asperger's 2 years ago. Sometimes when I tell people this they don't believe me. I have a "standard response" of "that's because we try so hard to act like we don't have it." I'm tired of that response though... any ideas? At first I wouldn't tell anyone & didn't want to talk about it. Now I just wish when I did they'd even care to understand it a little bit. Oh well. Thanks for being here.

[Guest guest]

Personally, I think there are times when it is very appropriate to tell

others about one's AS. And every parent on this list should be grateful

for every AS adult who " comes out " to others, as it paves the road for

their children, for future acceptance and understanding.

Of course you won't tell everyone you meet that you have AS, and I

imagine that you don't. But, sometimes it comes up. And sometimes it's

even necessary to tell someone, to explain one's behavior, or

difference.

And, I get that response ALL the time. People want to deny what they

can't see, or don't understand. A therapist gave me an excellent

response just the other day. She questioned whether the same person who

was doubting my AS would also doubt someone else's Cancer diagnosis, or

Diabetes diagnosis, just because they couldn't see any outward signs at

that particular moment.

In other words, just because symptomology is not currently present, it

does not mean that a diagnosis is inaccurate. And, just because a

support or " treatment " for a diagnosis is successful, it doesn't mean

that the diagnosis is inaccurate. That's like saying to someone who

wears eyeglasses, " well, it seems to me that your vision is perfectly

fine - I mean, you can see to get around and everything. "

So, by all means, tell people that need to know. Please speak up for our

children who are coming behind you. The world NEEDS to know about

Asperger's Syndrome and what it looks like. They need to know that the

" perfectly normal " looking person that they know *just might* have AS.

Sara, diagnosed AS at age 42

> >

> > Hi. I'm new on this group. I am 49 & only learned I have Asperger's

2 years ago. Sometimes when I tell people this they don't believe me. I

have a " standard response " of " that's because we try so hard to act like

we don't have it. " I'm tired of that response though... any ideas? At

first I wouldn't tell anyone & didn't want to talk about it. Now I just

wish when I did they'd even care to understand it a little bit. Oh well.

Thanks for being here.

> >

>

[Guest guest]

Welcome to the group!! You brought a ray of hope for us parents. How did you feel about the dx? I may not give you much of advise as my ds is only 17 and was dx w/ AS just a couple mo ago. I am just curious how you've dealt w/ it all these years, w/o accomodations at school / college? and if you are now holding down a job? how has that been for you?? Sorry for the ??? but curious parents wants to know as majority of us here have kids still in the early yrs all thru teen yrs. Thanx.

From: sybeve <sybeve@...> Sent: Monday, September 28, 2009 2:12:13 PMSubject: ( ) Hi I'm new here

Hi. I'm new on this group. I am 49 & only learned I have Asperger's 2 years ago. Sometimes when I tell people this they don't believe me. I have a "standard response" of "that's because we try so hard to act like we don't have it." I'm tired of that response though... any ideas? At first I wouldn't tell anyone & didn't want to talk about it. Now I just wish when I did they'd even care to understand it a little bit. Oh well. Thanks for being here.

[Guest guest]

Most people don't go around announcing their disability to others. If

people are close enough to warrant an explanation, then they should be

understanding (i.e. friends already). I don't know how to make people

want to know more about something. That has to come from them. I

think it would happen if that other person were a close friend.

 Roxanna

" The only thing necessary for the triumph of evil is for good men to do

nothing. " E. Burke

( ) Hi I'm new here

Hi. I'm new on this group. I am 49 & only learned I have Asperger's 2

years ago. Sometimes when I tell people this they don't believe me. I

have a " standard response " of " that's because we try so hard to act

like we don't have it. " I'm tired of that response though... any ideas?

At first I wouldn't tell anyone & didn't want to talk about it. Now I

just wish when I did they'd even care to understand it a little bit. Oh

well. Thanks for being here.

[Guest guest]

I don't have an " official " diagnosis yet. It's very difficult in the area I live

in, but I'm hopeful. It will be like the " frosting on the cake " of my own

validation!

How I've dealt with it could fill a book I suppose. I always felt " odd " & was

treated like I was " weird. " I spent a lot of time alone with books about

whatever I was interested in at the time. I have had jobs, but the emotional

part of dealing with people has been very difficult. I know I've read in many

places that Aspies don't react/feel like others, but I ascribe to an article I

read recently

(

http://www.thedailybeast.com/blogs-and-stories/2009-05-11/a-radical-new-autism-t\

heory/ )

as this does describe me.

I didn't notice until I was in my mid-twenties that I had a problem with eye

contact & interrupting people & then going on & on(because it was then I joined

a church & wanted to be more 'congenial' etc. when getting to know people)and so

I began to " train myself " in these 2 areas, and while both still do not come

" automatically " to me (I have to consciously remind myself every single time; if

I don't I just go back to how I always was) but doing this reminding has helped

me in conversations.

I still hate " small talk " and it annoys me; seems so trivial & pointless, and so

there too, I remind myself it isn't trivial to them, but still I 'endure' it!

LOL

Sense of humor helps. I did 1 yr. of tech college; it was intense & became the

obsession of the time! I've worked & these jobs too at the time became " the

obsession of the hour " also. The longest I held a job was 7 years. I don't have

to work now & have a very loving, supportive husband who is yes - VERY patient!

LOL

I also have PMDD & wondered just the other day if it was not just " AS Enhanced

PMS " ?! LOL

I love that you asked me questions because like I said before, NT's just look at

you & say " you don't SEEM like you have that. " One of them was the mom of an

Autistic (not AS) son who said she has a cousin or nephew w/AS... that's when I

coined my phrase " that's because we work so hard to act like we don't. "

Today I'm taking that well. I try so hard to " let go " of things that annoy...

that's hard, but it helps to try.

Thanks 4 asking. -Melodie

>

> Welcome to the group!! You brought a ray of hope for us parents.  How did you

feel about the dx? I may not give you much of advise as my ds is only 17 and was

dx w/ AS just a couple mo ago.  I am just curious how you've dealt w/ it all

these years, w/o accomodations at school / college?  and if you are now holding

down a job?  how has that been for you?? Sorry for the ??? but curious parents

wants to know as majority of us here have kids still in the early yrs all thru

teen yrs.  Thanx.

>

>

>

>

> ________________________________

> From: sybeve <sybeve@...>

>

> Sent: Monday, September 28, 2009 2:12:13 PM

> Subject: ( ) Hi I'm new here

>

>  

> Hi. I'm new on this group. I am 49 & only learned I have Asperger's 2 years

ago. Sometimes when I tell people this they don't believe me. I have a " standard

response " of " that's because we try so hard to act like we don't have it. " I'm

tired of that response though... any ideas? At first I wouldn't tell anyone &

didn't want to talk about it. Now I just wish when I did they'd even care to

understand it a little bit. Oh well. Thanks for being here.

>

[Guest guest]

Hi Robin. Yes, I was very glad to know. How I learned of this was when I was

looking for info about rocking behavior because my grandson had always done

that. I started researching online & one thing I started reading about was

Asperger's Syndrome. The more I read (he has meltdowns/obsessions too) the more

I kept saying " that's like me! " & " that's how I was! " Then I took out every book

at the library on it & kept reading online. (My Aspie folder in my favorites is

the biggest!) I took online tests and am trying to find a Dr. where I live for

" official " diagnosis. Wow, yes, it was about the most validating thing that's

ever happened to me! It explains my feeling of being " odd " all my life! thanks

for asking... Melodie

>

>

> From: sybeve <sybeve@...>

> Subject: ( ) Hi I'm new here

>

> Date: Monday, September 28, 2009, 4:12 PM

>

>

>  

>

>

>

> Hi. I'm new on this group. I am 49 & only learned I have Asperger's 2 years

ago. Sometimes when I tell people this they don't believe me. I have a " standard

response " of " that's because we try so hard to act like we don't have it. " I'm

tired of that response though... any ideas? At first I wouldn't tell anyone &

didn't want to talk about it. Now I just wish when I did they'd even care to

understand it a little bit. Oh well. Thanks for being here.

>

[Guest guest]

Hi,

I'm 37 and only realised after my son had problems. Hit me like a ton of lead, this was the reason I had spent my school days on the outside looking in and when I start a new job I am very quiet for the first couple of weeks til I have observed everybody, I also unintentionally copy mannerisms. I am married, have a full time job, all the normal things.

I think there are a few of us out there.

Lor B

From: Pamela <susanonderko@...>Subject: ( ) Re: Hi I'm new here Date: Tuesday, 29 September, 2009, 4:07 PM

Well I am not surprised. People don't seem to like to talk much about there own strengths and weaknesses. You might like to talk to a therapist, they would allow you to talk about this subject.I found that was the only place I could really talk over issuesabout my life too. It really helped. Because this was a need I hadto talk about my daughter's Asperger and to talk about my socialanxiety. And to talk about how these issues affected out lives.Once you have this need met to talk about your DX it may notbe necessary to tell people of it. I use to feel resentful that my family didn't want to helpme talk over all the issues I had to deal with my daughterbut now I don't care. I have our therapist and this group.Pam aniu >> Hi. I'm new on this group. I am 49 & only learned I have Asperger's 2 years ago. Sometimes when I tell people this they don't believe me. I have a "standard response" of "that's because we try so hard to act like we don't have it." I'm tired of that response though... any ideas? At first I wouldn't tell anyone & didn't want to talk about it. Now I just wish when I did they'd even care to understand it a little bit. Oh well. Thanks for being here.>

[Guest guest]

You speak for me there, Lor B.....

anna--- Den fre 2009-10-02 skrev Lorraine son <lorrainedavidson12@...>:

Från: Lorraine son <lorrainedavidson12@...>Ämne: Re: ( ) Re: Hi I'm new hereTill: Datum: fredag 2 oktober 2009 12.20

Hi,

I'm 37 and only realised after my son had problems. Hit me like a ton of lead, this was the reason I had spent my school days on the outside looking in and when I start a new job I am very quiet for the first couple of weeks til I have observed everybody, I also unintentionally copy mannerisms. I am married, have a full time job, all the normal things.

I think there are a few of us out there.

Lor B

From: Pamela <susanonderko>Subject: ( ) Re: Hi I'm new here Date: Tuesday, 29 September, 2009, 4:07 PM

Well I am not surprised. People don't seem to like to talk much about there own strengths and weaknesses. You might like to talk to a therapist, they would allow you to talk about this subject.I found that was the only place I could really talk over issuesabout my life too. It really helped. Because this was a need I hadto talk about my daughter's Asperger and to talk about my socialanxiety. And to talk about how these issues affected out lives.Once you have this need met to talk about your DX it may notbe necessary to tell people of it. I use to feel resentful that my family didn't want to helpme talk over all the issues I had to deal with my daughterbut now I don't care. I have our therapist and this group.Pam aniu >> Hi. I'm new on this group. I am 49 & only learned I have Asperger's 2 years ago. Sometimes when I tell people this they don't believe me. I have a "standard response" of "that's because we try so hard to act like we don't have it." I'm tired of that response though... any ideas? At first I wouldn't tell anyone & didn't want to talk about it. Now I just wish when I did they'd even care to understand it a little bit. Oh well. Thanks for being here.>

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