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Hi Larkspurmr.....

Welcome to the group! I have a son who will turn 14 this month..... he has OCD

(as well as a bowl full of

the alphabet soup), and he is dealing with the same issues that your son has

been dealing with. He has been

unable to go to school for over a year now. I would be interested to know more

about the clinic that you

brought your son to.

Did you live nearby, or did you have to stay there for a month? Was your son in

inpatient treatment?

We are considering this option for our son and I would love to know everything

that you can share to

help us with our decision.

You see..... you already have a lot to share..... I hope that we can offer you

support and info. as well.

Take care and welcome again!

mary from La.

ps Feel free to email me privately.... : )

larkspurmr@... wrote:

> From: larkspurmr@...

>

> This is my first time here. I have a 14 yr. old son with OCD. He was

diagnosed at 7. He is doing much better now but it has been a long, hard

struggle for him. When he was first diagnosed, he was not able to leave the

house and had to be schooled at home. Even that was a struggle for him. He

couldn't touch the books and would have to wash many times. He also did

checking, hoarding, magical thinking and scrupulosity. After two wrong

diagnosis (separation anxiety and school phobia), he was diagnosed with OCD and

we started him on medication. This helped somewhat but it was still difficult

for him to go to school or leave the house; but at least he seemed to get some

relief from the constant torment. We tried many different therapists who

supposedly specialized in OCD but nothing seemed to help and the therapy with

those doctors actually seemed to make him more anxious. When he was 9, we found

a support group and that seemed to help him at least to know that he was not

alone.

> But school and the actual ocd thoughts and compulsions were still getting in

the way of his everyday life. He avoided many things. After many horrific

experiences with different therapists, I started inquiring about intensive

exposure response programs. When he was 11, we went to Dr. Foa's intensive

program for one month. There, we met the therapist that worked with my son and

was able to connect with him and push through the resistance that other

therapists could not. She truly knew what OCD was and understood it completely.

My son saw this immediately. In the past he would tell us that we were wasting

our money because the therapists were not helping him. They worked on

contamination issues, hoarding and magical thinking. His whole life has changed

since this therapy and none of the things he worked on have returned. He is

now in school for almost a full day and is able to even have sleepovers at

friends houses. Normal things for most kids but we think they are the

> greatest things in the world! I'm glad to have found this board and hope I

didn't write too much.

>

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

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Welcome! And thank you for sharing your inspiring success story. I am in the

process of finding a new doc for my 12 yr old daughter (she's been diagnosed

with ocd since age 9 but only takes meds, no CBT yet) and reading about your

experience is very helpful.

Do you think your son could explain what made the difference for him in terms of

therapists? It seems like the old ones were working on the right things but not

in the right way. I will be interviewing the new doc next week - do you have

any suggestions for specific questions I should ask?

It's great that your son's life changed so dramatically for the better.

Sleepovers and returning to school are big accomplishments. You must be proud

of him! Glad you're here.

Dana in NC

larkspurmr@... wrote:

> From: larkspurmr@...

>

> This is my first time here. I have a 14 yr. old son with OCD. He was

diagnosed at 7. He is doing much better now but it has been a long, hard

struggle for him. When he was first diagnosed, he was not able to leave the

house and had to be schooled at home. Even that was a struggle for him. He

couldn't touch the books and would have to wash many times. He also did

checking, hoarding, magical thinking and scrupulosity. After two wrong

diagnosis (separation anxiety and school phobia), he was diagnosed with OCD and

we started him on medication. This helped somewhat but it was still difficult

for him to go to school or leave the house; but at least he seemed to get some

relief from the constant torment. We tried many different therapists who

supposedly specialized in OCD but nothing seemed to help and the therapy with

those doctors actually seemed to make him more anxious. When he was 9, we found

a support group and that seemed to help him at least to know that he was not

alone.

> But school and the actual ocd thoughts and compulsions were still getting in

the way of his everyday life. He avoided many things. After many horrific

experiences with different therapists, I started inquiring about intensive

exposure response programs. When he was 11, we went to Dr. Foa's intensive

program for one month. There, we met the therapist that worked with my son and

was able to connect with him and push through the resistance that other

therapists could not. She truly knew what OCD was and understood it completely.

My son saw this immediately. In the past he would tell us that we were wasting

our money because the therapists were not helping him. They worked on

contamination issues, hoarding and magical thinking. His whole life has changed

since this therapy and none of the things he worked on have returned. He is

now in school for almost a full day and is able to even have sleepovers at

friends houses. Normal things for most kids but we think they are the

> greatest things in the world! I'm glad to have found this board and hope I

didn't write too much.

>

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

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It is so encouraging to hear success stories! Thanks for writing.

Judy

larkspurmr@... wrote:

>

> From: larkspurmr@...

>

> This is my first time here. I have a 14 yr. old son with OCD. He was

> diagnosed at 7. He is doing much better now but it has been a long,

> hard struggle for him. When he was first diagnosed, he was not able

> to leave the house and had to be schooled at home. Even that was a

> struggle for him. He couldn't touch the books and would have to wash

> many times. He also did checking, hoarding, magical thinking and

> scrupulosity. After two wrong diagnosis (separation anxiety and

> school phobia), he was diagnosed with OCD and we started him on

> medication. This helped somewhat but it was still difficult for him

> to go to school or leave the house; but at least he seemed to get some

> relief from the constant torment. We tried many different therapists

> who supposedly specialized in OCD but nothing seemed to help and the

> therapy with those doctors actually seemed to make him more anxious.

> When he was 9, we found a support group and that seemed to help him at

> least to know that he was not alone. But school and the actual ocd

> thoughts and compulsions were still getting in the way of his everyday

> life. He avoided many things. After many horrific experiences with

> different therapists, I started inquiring about intensive exposure

> response programs. When he was 11, we went to Dr. Foa's intensive

> program for one month. There, we met the therapist that worked with

> my son and was able to connect with him and push through the

> resistance that other therapists could not. She truly knew what OCD

> was and understood it completely. My son saw this immediately. In

> the past he would tell us that we were wasting our money because the

> therapists were not helping him. They worked on contamination issues,

> hoarding and magical thinking. His whole life has changed since this

> therapy and none of the things he worked on have returned. He is now

> in school for almost a full day and is able to even have sleepovers at

> friends h! ! ouses. Normal things for most kids but we think they are

> the greatest things in the world! I'm glad to have found this board

> and hope I didn't write too much.

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

> [

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Hi!

Welcome to the list!! I just found this list about a month ago. And I

have to say I have been so glad that I did. There is lots of help and

support to be found here.

Thanks so much for sharing your son's story with us. It is so

encouraging to hear stories like his. I am so happy for y'all.

My son is 8 and was just diagnosed last month with OCD. He is mainly a

washer. We have just started meds with him. He has seen his therapist

only 3 times so we haven't been at this very long yet.

Please tell us more about the clinic your son went to. Where was it

located etc.??

Glad to meet ya!

in Louisiana

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  • 3 months later...
Guest guest

Tami,

I am glad to see you writing again. I was on vacation and decided to

read a few posts when I found out that your body decided to fight you. I was

so concerned. Everybody in my family was praying for you. I went back to

where I was reading email the next day and read more about you. I was

relieved to hear that things were better than what they had been.

I just want you to know that I have been thinking of you. I have missed

your wonderful posts. Now, don't overdo it by posting too much. Like I have

said before, a little Tami Light is a whole lot better than no Tami Light at

all. I am glad to feel your radiance again!

Get better soon!

Shanni

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Guest guest

Glad to hear you're doing better Tami. Was so surprised to see a post from you :-) Keep on taking good care of yourself and by the grace of God you'll be back here full time again :-) God bless you and your sweet little family.

{{{HUGS}}},Bonnie

**********************************************With God, ALL things are possible.**********************************************

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Guest guest

Tami, how wonderful to hear that you are getting well. I have to say

that your spirit is so positive during all of this. So glad that

your family is doing well too. Now get off this computer and go rest!

> What a wonderful and extremely warm May we are having here lately!

I

> have been reading the posts, not receiving any mail, but reading

the

> from the site and was so touched to see a question raised in regard

> to my welfare. I am so pleased to report that I am doing better.

> Today, it was necessary that I under go another minor surgery, and

am

> very glad to have that past me.

>

> My heart is still a cause of major concern, since the entire first

> surgery has been considered invalid, due to some major errors on

the

> part of the team preforming the angiogram and angioplasty.

> Unfortuneatly, I am bound to the bed, for the majority of the days,

> but have found that the wonders and healing power of oxygen can

most

> definately cross over any such bounderies!

>

> I am so very sorry to have been forced to abandoned ship in this

time

> of many leaving. It was never my intention to cast such a burden

on

> the rest of you faithful listers, sometimes things happen though,

> that are beyond our control.

>

> It is so fabulous to have the benefit of learning such a marvelous

> means of exercise and toning, that it can even be extremely

effective

> done from the bed is extrodinary! It amazes me to see my body

> remaining so very lean and trim, when it is nearly impossible for

me

> to walk farther than to the next room. Gals, this program really

> does work, we must remember not to give up and to continue to

breath,

> even when we don't feel like it. No, let me change that,

especially

> when we don't feel like it!

>

> I will try to post again soon, and please know that I have thought

> about you all and this list very often. Also, the children are

doing

> well and progressing with amazing ease, through the various trials

> that life has set before them, as well as us all. My son is

> performing with such beauty and skill as he endevours to perfect

the

> martials arts and my daughter is growing more and more beautiful by

> the day, both inside and out. My incredible husband has been there

> every step of the way for me and has yet to complain or leave my

side

> if I should need him there. What wonderful gifts I have been

blessed

> with, both with my children and husband.

>

> Well, that's about all for now. Please know that all is well and I

> truly believe myself to be among the most fortunate and fulfilled

> people alive. Life is great, remember to go out and live it to

it's

> fullest, sharing a smile along the way!

>

> Sincerely,

> Tami

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Guest guest

Hi Tami,

It is good to hear from you but please do get some rest! We will be

here when you are ready to come back. Your body needs time to heal.

Our prayers are with you still :-).

Michele

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Guest guest

Oh Tami, how good it is to hear from you. And don't think for a minute that

you let anyone down or jumped ship. You are very much in all our prayers

and our only hope is for you to get your health back. We miss you teribly

but want you to think of yourself for a change and build your strength up.

God bless you and your wonderful family.

Saying hello

> What a wonderful and extremely warm May we are having here lately! I

> have been reading the posts, not receiving any mail, but reading the

> from the site and was so touched to see a question raised in regard

> to my welfare. I am so pleased to report that I am doing better.

> Today, it was necessary that I under go another minor surgery, and am

> very glad to have that past me.

>

> My heart is still a cause of major concern, since the entire first

> surgery has been considered invalid, due to some major errors on the

> part of the team preforming the angiogram and angioplasty.

> Unfortuneatly, I am bound to the bed, for the majority of the days,

> but have found that the wonders and healing power of oxygen can most

> definately cross over any such bounderies!

>

> I am so very sorry to have been forced to abandoned ship in this time

> of many leaving. It was never my intention to cast such a burden on

> the rest of you faithful listers, sometimes things happen though,

> that are beyond our control.

>

> It is so fabulous to have the benefit of learning such a marvelous

> means of exercise and toning, that it can even be extremely effective

> done from the bed is extrodinary! It amazes me to see my body

> remaining so very lean and trim, when it is nearly impossible for me

> to walk farther than to the next room. Gals, this program really

> does work, we must remember not to give up and to continue to breath,

> even when we don't feel like it. No, let me change that, especially

> when we don't feel like it!

>

> I will try to post again soon, and please know that I have thought

> about you all and this list very often. Also, the children are doing

> well and progressing with amazing ease, through the various trials

> that life has set before them, as well as us all. My son is

> performing with such beauty and skill as he endevours to perfect the

> martials arts and my daughter is growing more and more beautiful by

> the day, both inside and out. My incredible husband has been there

> every step of the way for me and has yet to complain or leave my side

> if I should need him there. What wonderful gifts I have been blessed

> with, both with my children and husband.

>

> Well, that's about all for now. Please know that all is well and I

> truly believe myself to be among the most fortunate and fulfilled

> people alive. Life is great, remember to go out and live it to it's

> fullest, sharing a smile along the way!

>

> Sincerely,

> Tami

>

>

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

> Best friends, most artistic, class clown Find 'em here:

> 1/4054/1/_/812636/_/959063489/

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

>

> Please use our list bookstore In Association with Amazon.com If you are

looking for anything, please click on this link first! Thanks!

http://www.amazon.com/exec/obidos/redirect-home/karmasrecommerea

>

> If you choose to read the messages from the web, then you might be

interested in getting paid to do it.

http://www.alladvantage.com/go.asp?refid=ICA-586

>

>

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  • 2 years later...

Hi Karyn,

I too, have a 2 yo daughter with asd. Maybe you could list some of your

daughters symptoms so we could offer some suggestions. Olivia is in IEP

right now, twice a week. We are currently focusing on brushing to lessen

her sensory issues. Also working on muscle tone as she's still not

walking but scootches on her bum to get around. Welcome aboard.

Rhonda

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> Hi

is 2, will be 3 end of December. She was the perfect typical developing

little angel, until around 10-11 months old. She started getting sick, had

several ear infections,rounds and rounds of anti-biotics,chronic sinus probs,

etc. I I have since learned that her old ped vaccinated her while she still had

snti-biotics in her system!!!! I have also learned a great deal as far as what

all else went wrong in the poor kids life with all this stuff. She is nonverbal,

doesn't point, no way of making contact and doesn't like to. I quit my job last

month, before I quit I went on Rimlands site, and took the ATEC questionaire.

She scored a whopping 137. Since that time I have made it my mission to attack

the problems that she has and I can honestly say it's working. In the month that

I have been at home, we have implemented the GF/CF diet, started working on

healing her gut and getting rid of yeasties, buggies, etc., ST, OT, and a home

based ABA program. In one month she retested and scored a 73. We have a long way

to go, but she is making progress everyday. That's where we are, and I guess I

just wanted more feedback from those who have female children w/ASD. Everyone I

know has a son, and most people on listserves that I'm a member of have sons. At

some point the issues that we deal with will be different than it will be

dealing with a boy. Just wanted to be able to have my hands in the cookie jar,

so that I will get a little more than the crumbs. So to speak!!!! Thanks.

Karyn

> From: rhonda m pineau <scottron2@...>

> Date: 2002/11/20 Wed AM 09:11:19 EST

> Autism_in_Girls

> Subject: Re: Saying " Hello "

>

>

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Welcome Karyn and Debi

My name is Tracey and I have two daughters. Our oldest is Coral (nt),

she is 12 and our youngest is Skylar age 10 and she was diagnosed as

autistic and the age of 3. This is a great list full of support and

advice. Its nice to have you with us.

Tracey

kleslie74 wrote:

> Hi!

>

> My name is Karyn and I am a mother to a 2 yr old daughter with Autism

> Spectrum Disorder. Right now, I am in the process of trying to

> gather information on this disorder and decide what therapies would

> best help her. I am leaning towards ABA, but am still open to any

> suggestions or input any of you may have.

>

> Thanks in advance!

>

> Karyn

>

>

>

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Karyn,

I very much recommend you also join the enzyme group. This is the most

informative group I've come across so far. The people are extremely

patient and unbelievable knowledgeable. I would also check out Andy

Cutler's leaky gut protocol at www.kirkmanlabs.com sounds like your

little one would apply to this study. Here's the enzyme group address:

autism treatment@groups

They have been so helpful for us. As for ABA, my OT also thinks this

might be a bit too much for such young children.

Good luck to you. Rhonda

PS- As for the gf diet, please read the 7 month report on the enzymes

group. Some people (lots in fact) seem to be able to toss the diet with

the use of digestive enzymes. Not all, mind you, but enough that it's

worth a try.

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You are definately starting off on the right track... starting early and

exploring the different types of interventions and educational approaches is

a smart thing.... sometimes the diets work....other times they have no

effect....alot of parents try DMG first.,... it helps some kids makes other

crawl the walls... The best advice I can give is to keep looking for

information online...you'll get alot.... and try different approaches for

education.....no one approach is 'right' for all kids with ASD's. Stay on

top of the Schools....learn IDEA...and be prepared to make a firm stance on

your educational requests.....Good luck to you.... I look forward to

hearing more from you !

Mike

*********************************************

The Office Of Advocacy for Autistic Children

*********************************************

----- We Need Your help to stay open -------

**********************************************

E. ,

Reg. U.S. Civil Rights Lobbyist

Dir, OAAC Dir, C.O.P.S. <inquire about this>

Lil Mikey's Daddy

============================

" We Speak for those who can not, we will fight relentlessly for the Civil

Rights of all Children....disabled or not .. Globally "

============================

Contact Mike for free online advocacy here at this email address or

call if you need immediate assistance at 808-845-7841 in Honolulu at my

home office.......1659 Meyers Street Monolulu, HI 96819(send any

doc's/donations here please)....... We offer parents up to 1 hour of free

teleconference or phone advice. Due to increasing costs and lack of outside

funding/donations(if you can send us either long distance phone cards or a

small monetary donation to help cover office supplies and other costs..we

would realy appreciate it), we are now asking for a min. donation of

$300.00 to cover the costs of initiating the case and preparing the due

process documents/discovery... for cases that go beyond the need of a phone

conference or teleconferece with the district and require more than 1 hour

of teleconference time, we ask for a donation based on the current

situation. This is to cover the cost only... of the services we provide...

we are a not for profit entity and work for children, not money. For

informal help you can also call , our Chicago area rep at 217-586-7504,

for free phone advocacy anytime. In person professional advocacy available

on a case by case basis nationwide. We will be partnering up with a new

attorney soon here in Hawaii where our office will be located, until then

please call me at the 808 # if you need to....

don't hesitate.

" Peace to the Children "

- Mike

-----------------------

>From: " kleslie74 " <kleslie74@...>

>Reply-Autism_in_Girls

>Autism_in_Girls

>Subject: Saying " Hello "

>Date: Wed, 20 Nov 2002 05:07:40 -0000

>

>Hi!

>

>My name is Karyn and I am a mother to a 2 yr old daughter with Autism

>Spectrum Disorder. Right now, I am in the process of trying to

>gather information on this disorder and decide what therapies would

>best help her. I am leaning towards ABA, but am still open to any

>suggestions or input any of you may have.

>

>Thanks in advance!

>

>Karyn

>

_________________________________________________________________

Tired of spam? Get advanced junk mail protection with MSN 8.

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Karyn,

Hello !! My name is . I have 5 children (ages 14-19mos). My 4yr old

daughter is autistic. We got her diagnosis @ 22mos. We have been doing

ABAwith her since she was 2 1/2yrs old. We have recently increased her ABA

hours to 25hrs in addition to getting speech, ot, music therapy & equistran

therapy. She also attends a school that is geared for autistic children. The

school has typical developmental peers as role models. We love the school

because it provides the school environment & social skills that our home

based ABA program cannot. We have noticed alot of improvements since we

started the ABA. We have less behavioral problems when its time for her to

work now compared to where she was when we started the program. In the past

few months, her rate of mastering as rapidly taken off. It used to take her

couple of weeks before she would learn a new program but now its taking her

just a couple of days. Now don't get me wrong, we still have alot of days

where she doesn't want to work or that we don't have her attention span. But

the way I look at my daughter's therapies is that every therapy is one link

to a chain & without every link the chain wouldn't be as strong.

Saying " Hello "

> Hi!

>

> My name is Karyn and I am a mother to a 2 yr old daughter with Autism

> Spectrum Disorder. Right now, I am in the process of trying to

> gather information on this disorder and decide what therapies would

> best help her. I am leaning towards ABA, but am still open to any

> suggestions or input any of you may have.

>

> Thanks in advance!

>

> Karyn

>

>

>

>

>

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Karyn, I have a 3 yr old autistic daughter. We found that the

gluten/casein free diet made a tremendous difference in her. In fact,

she was non-verbal and within a week of removing dairy she said her

first word she didn't lose, within 2 months she had over a 100 word

vocab. We also do Super Nu-Thera and zinc vitamins from

www.kirkmanlabs.com Discrete trials seems to be the way to go to

teach Allie, but until we got her biological issues taken care of it

didn't help much. Now she learns very quickly with discrete trials.

One example was her occupational therapist trying to teach her to

ride a trike. After two months of no success (I thought she was using

discrete trials all along!) she took a d.t. seminar and within two

weeks Allie was pedaling up and down the hallway.

The final thing we have done for Allie is a tiny amount of paxil. She

became very obsessive and anxious after a long period of development.

For her these were debilitating. The paxil has taken the edges off in

a big way and help her to function MUCH better. I'm also going to

chelate in the next few months, still educating myself on that.

HTH,

Debi

> Hi!

>

> My name is Karyn and I am a mother to a 2 yr old daughter with

Autism

> Spectrum Disorder. Right now, I am in the process of trying to

> gather information on this disorder and decide what therapies would

> best help her. I am leaning towards ABA, but am still open to any

> suggestions or input any of you may have.

>

> Thanks in advance!

>

> Karyn

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Rhonda, Allie didn't walk until about 17 mos, but after that she

still preferred the floor and would crawl or scoot down steps at 22

mos. She also had very low muscle tone, but for Allie it seemed to be

very vestibular. She also from birth would cry when she was placed on

a changing table or diaper deck and prefered lying on the floor than

being held. We found the therapy swing to have a major impact on her.

When she first began we had to wrap her in her favorite quilt, play

Accapella CD (very calming music), turn off the florescent lights,

and I had to stay where she could see me (she still screamed the

first few visits). We had occupational therapy 2 times/week, but my

hubbie built a platform swing that we hang in our den. There were

days that it seemed as if we were swinging all day long, but it made

a huge difference in her. She hardly needs it at 3 yrs 4 mos, but

it's an attraction for family/friends' kids who visit, lol.

hope I've helped!

Debi

> Hi Karyn,

> I too, have a 2 yo daughter with asd. Maybe you could list some of

your

> daughters symptoms so we could offer some suggestions. Olivia is

in IEP

> right now, twice a week. We are currently focusing on brushing to

lessen

> her sensory issues. Also working on muscle tone as she's still not

> walking but scootches on her bum to get around. Welcome aboard.

> Rhonda

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  • 2 years later...
Guest guest

Hello Everyone,

It's been a while since I posted and I wanted to welcome our new members!

Sounds like lots of fun being had out there learning how to Lifelift.

Someone asked about the various Body Wrap products used on the breasts for

reduction. I am very large breasted; I think by the age of 12 I was already a C

Cup and they kept on growing. I do use all of Rashelle's body wrap products

and will notice that my breasts don't feel quite as heavy as they used to. And

the products do seem to help firm them a little too. As I lose weight;

eventually the breast will get a bit smaller; but I do stay in the same cup

size. Bonnie, you mentioned breast reduction; my little sister had that done a

few years ago and she too said it was the best thing she did for herself; she is

short and small framed and just couldn't hold them up any longer. LOL

Thankfully, I'm taller and large framed so I carry my breasts better than she

did.

Someone asked about the Body Wrap products; how long they last, etc. That

definately varies as to how often you use the products. When I'm able, I use

them daily and they last about a month. I do use them from my face on down to

the top of my feet. I never wrap my body when I use the products; so I cannot

compare the difference in the inch loss. I love the convenience of using these

products when getting dressed for the day; throw on support pantihose under my

clothes and that keeps me warm and helps the product penetrate as well. I also

sometimes use the product and then dress normally. No matter how you choose to

use them; they are wonderful; all of them! As for the Comfrey Gel; this

stuff is amazing. It helps wish skin rashes; and I have an allergy to the sun;

any part of my body that is exposed to the sun gets an awful looking bumpy rash;

I now use the Comfrey Gel on that and it helps the healing be a lot quicker.

As for it being moisturizing; since it's

Aloe vera I would assume it is; but Rashelle would be the one to answer that.

I hope everyone is doing well and I will check in again hopefully sooner than

later. : )

Take care all,

Wanda.

http://www.lifelift.net/cgi-bin/affiliates/clickthru.cgi?id=WinWithLifeLift

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  • 9 months later...
Guest guest

HI SWEETIE.. EVERYONE say hi to Colleen,, she is one of the good ppl out there,, IM so glad you came to the room,, you will like everyone in here..Its been a little slow lately but it will pick up,, so give it plenty of time,, and Liz will pop in soon to say hi,, You can reach me via email anytime too,, you know that! hugs jax"last.colleen" <last.colleen@...> wrote: Hi to all, I am Colleen and have come in upon the advice of Jackie (who is one of my heroes)Telling me that the people here are kind and "true". is in that "hero" category as they got me through tx last year. So hello to all.I hope to pass on the support to anyone who needs it as I know how badly I did when I was filled with fears and bad information when I first

entered rooms like this in need of information and support. Sincerely, Colleen Jackie

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Guest guest

Welcome Colleen! So nice to meet you. You

are very welcome here!

anne

(moderator and Mother Hen)

From:

Hepatitis C

[mailto:Hepatitis C ] On

Behalf Of last.colleen

Sent: Wednesday, 5 April 2006 1:22

PM

To:

Hepatitis C

Subject:

Saying Hello

Hi to all, I am Colleen and have come in upon the advice of Jackie

(who is one of my heroes)Telling me that the

people here are kind

and " true " . is in that

" hero " category as they got me

through tx last year. So hello to all.I hope to

pass on the support to

anyone who needs it as I know how badly I did when

I was filled with

fears and bad information when I first entered

rooms like this in need

of information and support. Sincerely,

Colleen

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Guest guest

Welcome Colleen, I am super glad that Jackie invited you here. Yes Jackie and are my heroes too. As many of the members here are. You will come to appreciate and love them as much as I do. We are truly blessed to have members that are so wonderful and helpful to all that enter. Thank you for joining and I hope this is a beginning of a wonderful friendship with all the members here. Love Janet "last.colleen" <last.colleen@...> wrote: Hi to all, I am Colleen and have come in upon the advice of Jackie (who is one of my heroes)Telling me that the people here are kind and "true". is

in that "hero" category as they got me through tx last year. So hello to all.I hope to pass on the support to anyone who needs it as I know how badly I did when I was filled with fears and bad information when I first entered rooms like this in need of information and support. Sincerely, Colleen There are souls in this world which have the gift of finding joy everywhere and of leaving it behind them when they go." -Frederick Faber

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Guest guest

HI honey welcome to the group !! Glad to see you ..

Saying Hello

Hi to all, I am Colleen and have come in upon the advice of Jackie (who is one of my heroes)Telling me that the people here are kind and "true". is in that "hero" category as they got me through tx last year. So hello to all.I hope to pass on the support to anyone who needs it as I know how badly I did when I was filled with fears and bad information when I first entered rooms like this in need of information and support. Sincerely, Colleen

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Guest guest

>

> Welcome Colleen...how'd your tx go?

>

>

>

Hi , I was txed for 6 months,finishing Nov.30.Unfortunately, I

have a HUGE amount of unHEP related other medical problems which did

really came out while I was treating. I did find that it wasn't 1/2

as bad as I was expecting though.I do think a big part of that was

due to the great support I had at home and online and trying my best

to remain positive in attitude as much as possible.I think fear

and " expecting " everything to be bad makes it far worse for many

people.Yes, I was very sick and had so many nasty sides but to me it

was just a small part of the big picture and I think because I am

used to illness I was able to endure it easier than some others are.

I am very happy to say, I did clear and to date, remain so. My

biggest complaint was that most doctors do not tell what to expect

both during and post tx. I am still having some vision problems and

some agoraphobia but each day I feel it easing more and more.I

really think there should be more info given by the doctors so we

are not freaked out when some of the stranger sides show up but I

was very lucky to have online friends and between us we came up with

some pretty good solutions to some problems the doctotrs were

useless with.

Are you txing now/have txed or will be in the future?

Thank you for asking and I hope to hear how you are doing in your

journey as well.

Sincerley, Colleen

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  • 5 years later...

Hi,

I'm a newcomer to this forum, and I believe its usual to give a little

information about one's thyroidal issues .

Im 55 and live in Ireland and have been diagnosed hypothyroidal for about 4

years, but have been in trouble probably for 17 years. Looking back, I put the

tiredness and other symptoms down to having small kids, general stressful life

changes and getting older. By the time I was diagnosed I was having problems

standing up and/or walking and was thought to have some sort of neurological

disorder - MS or motor neurone. The diagnosis of hypo was seen as being a

side-issue to the other problems (the GP prescribed 50mcg levo, rising to 100mcg

eventually). Scans showed no signs of MS but the neurologist felt that I could

be in the early stages of Motor Neurone and that a wait and see approach was the

only route open to me - so I did what I could to make myself safe. I didn't go

out without my husband, I made sure that wherever I went I didn't have to

negotiate stairs or deal with crowds and I prepared to end up in a wheelchair -

I actually would have welcomed that as at least I couldn't fall over! I then

began to have panic attacks and this was kind of rock-bottom for me. I had been

searching the internet for help but had been looking at neurological issues and

hadn't found anything which confirmed, to my mind, that my problems were

neurological. My feeling had been from the early stages of the balance issues

that there was a strong emotional component to the problems (adrenals). I work

as a psychotherapist so I would think that wouldn't I! I started to look at

sites for thyroid sufferers and found that a lot of my balance symptoms could be

attributed to the under active thyroid - muscles locking up, myasthenia. But the

levo wasn't helping much, I was less tired but started to get chest pains on

exercising. I asked my GP to send me for tests on my adrenals as it seemed that

my panic attacks and dizziness were related to some sort of fatigue, which she

duly did, but those tests came back negative. They did tell me that my iron was

'quite' low but as noone made a fuss about it I didn't bother either. I

introduced Magnesium and B12 and felt much better very quickly, the muscle

cramps went. I then asked my GP to prescribe armour for me as I had read good

things about it. she knew nothing about it but the local pharmacist was already

supplying armour to people in the area so she was willing to give me the

prescription and I started taking it. Again I experienced a big improvement

across the board but was still apt to get anxious and panicky and had balance

problems. I also strated taking iron supplements and realised that when I took

iron I felt much better - less gasping for air, no asthma, more energy.

I eventually contacted Dr P in September this year and he told me to get Adrenal

support and Progesterone along with the Armour and various vits and mins. The

difference the introduction of those two made was miraculous really. I am 85%

better but am now introducing T3 as I cannot get my Armour dose above 2 grains

without chest pains. I feel tired/sleepy, lacking in physical vitality and am

very overweight but things are good. I am looking for a little help with the T3

(I have ordered 's book but won't have it for another week). Dr P

told me to cut the Armour to 1.5 grains and taking initially 10mcg T3 and over

the next couple of weeks to raise the T3 to 20mcg and lower the armour. Now I

realise that this is going to be a 'suck it and see' exercise and I'm fine with

that, but I am feeling a little woosy with the T3. I started taking it

yesterday so initially I had 1 grain of armour and then 10mcg T3. I didn't take

any more armour yesterday as I ws feeling a bit jittery and hot. Today I have

taken just the 10mcg T3 and no armour yet and I feel woosy and hottish. I need

to add that for years now I have hardly sweated or felt hungry so the hot

feeling may be actually normal and I tend not to eat much in the morning, as I

don't feel hungry. Anyway, sorry for blathering on. It has been very useful

for me to write this as I can see my progression to relative wellness pretty

clearly and I hope I haven't put you all to sleep but any suggestions as to a

sensible protocol for the T3 and Armour combination would be very welcome and I

am looking for an iron supplement which works well and a reputable (and cheap)

supplier of good vits and mins. The iron supplement which I found worked best

for me was Lennons irondrops - ferric citrate - it is from South Africa and is a

kind of old fashioned remedy for low iron, and I wondered if anyone else has

heard of it and whether it is obtainable in uk/Europe?

I will stop now.

Thanks for reading

Finola

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