introducing myself

[Guest guest]

Welcome Robin! I sounds as if we had similar Christmases, that was around the

time my daughter (now 5) began having obsessions and was diagnosed. I'm glad

your girl is doing better now.

Kathy R. in Indiana

Introducing myself

Hi everyone,

I have been observing this list for quite some time but haven't introduced

myself until now. I am the mother of a three and half year old daughter who was

diagnosed with OCD around Xmas time. As she is so young and we are so new at it

I haven't felt as though I had much to offer to this list until now. Her primary

issues are clothing sensitivity. I suspect that her OCD is pandas related but

who knows for sure. She has never had strep throat before but from the article

on PANDAs posted to this list it sounds as though it is a strong possibility.

She is doing well right now THANK GOD!! I am watching to see if with the

triggers for her next episode is linked to illness. We have been in a slow

improvement period since her last episode which came on four days into a virus

with fever. It came on fast and furiously. When it is bad life halts as she can

not tolerate clothing at all including panties. She also is frightened of having

bowel movements and is bothered by perspiration and is generally uncomfortable

with anything she views as wet. We have had some luck with a kind of modified

cbt where she calls her OCD miss picky pants and she tries to boss her back. It

is slow and painful but she is highly functioning right now and we are hoping to

start her in part time preschool this summer. I also live in dread of the next

episode but am thinking that if illness is truly the trigger I can at least be

thankful that she is a healthy kid and doesn't get sick real often. I am sure

preschool can change this. Anyway, for now a wordy and yet vague introduction of

my daughter and myself. PS we are also in Hawaii.

Aloha, Robin

[Guest guest]

Hi RobinŠ

It's interesting how those " positive " stressors like X-mas bring on an OCD

episode. Kelsey's OCD came to stay right around her 7th birthday in March.

Glad things are betterŠ

in S.D.

[Guest guest]

Hi. Robin, Welcome .I don't know how long you have been out there.My

granddaughter has ocd and the clothing sensitivity problems.e is going to be

6 the end of May, she started right after she turned 4 with the underpants.Let

me know if you already know about e so I don't repeat everything again. If

you don't know about her I'll forward you some letters.I only know of one other

little girl who has the same symptoms as e,and they live in GA. Most

everyone else has other symptoms beside the clothes. I'm so happy your daughter

is doing so well at this time.e is having such a hard time with all

clothing. God Bless, Beth in IN.

Introducing myself

Hi everyone,

I have been observing this list for quite some time but haven't introduced

myself until now. I am the mother of a three and half year old daughter who was

diagnosed with OCD around Xmas time. As she is so young and we are so new at it

I haven't felt as though I had much to offer to this list until now. Her primary

issues are clothing sensitivity. I suspect that her OCD is pandas related but

who knows for sure. She has never had strep throat before but from the article

on PANDAs posted to this list it sounds as though it is a strong possibility.

She is doing well right now THANK GOD!! I am watching to see if with the

triggers for her next episode is linked to illness. We have been in a slow

improvement period since her last episode which came on four days into a virus

with fever. It came on fast and furiously. When it is bad life halts as she can

not tolerate clothing at all including panties. She also is frightened of having

bowel movements and is bothered by perspiration and is generally uncomfortable

with anything she views as wet. We have had some luck with a kind of modified

cbt where she calls her OCD miss picky pants and she tries to boss her back. It

is slow and painful but she is highly functioning right now and we are hoping to

start her in part time preschool this summer. I also live in dread of the next

episode but am thinking that if illness is truly the trigger I can at least be

thankful that she is a healthy kid and doesn't get sick real often. I am sure

preschool can change this. Anyway, for now a wordy and yet vague introduction of

my daughter and myself. PS we are also in Hawaii.

Aloha, Robin

[Guest guest]

In a message dated 5/28/00 12:16:56 AM Eastern Daylight Time,

aisha@... writes:

<<Lights - cant cope I live in a dark little room, sound - forget it! (Which

is *THE* worst thing for me as I am a musician)

How the hell do you manage to get to the grocery store? Are you able to

drive? You sound way to ill to be doing such things! >>

<<<<<<<<

Oh no!! I will never give up my independence as long as I can possibly find

ways around it. Hell, I even took a 7 week driving trip ALONE last fall, and

4 weeks the year before. I just factor in all the crap and nothing is carved

in stone. It is wonderful to have the freedom even if others shudder.

I was talking about it to some friends and I said the worst that could happen

would be that I would have to come home. A friend corrected and said " Or you

could die " and I agreed and said that still wouldn't be the worst. The worst

would be to die without ever trying to do the things I want to do. I saw the

ocean for the first time, I drove through the Northeast in the fall.

I broke my jaw when I fell at Gettysburg - but hell, I was at Gettysburg. If

I had listened to people, I would NEVER have seen that incredible place. So

I dealt with the broken jaw.

I go grocery shopping once a month. In the middle of the night, and when I

am feeling fairly good. We always have a well stocked cupboard and freezer

so that I can be flexible. I sometimes go to the store at other times if I

am feeling good on a given day.

BTW - the no loud noises and no music are particularly painful for me as

well. I have been around music all my life, and I sing. Not really

professionally, but I did get paid to sing at weddings and funerals and such,

as well as singing solos and duets with my dad at church, since I was a very

young girl. So not being able to listen to music and not being able to sing

are very painful.

<<<<<<<<<<<<<<

<< Ewwwwww that sounds really horrid. You must keep us informed as to when

you are there and when you are out, or we will all worry about you... It

sounds really nasty. I read your profile that was sent (thought I'd replied

to it but I don't remember) and you said you were waiting for a heart

transplant? That must be terrifying.

>>

<<<<<<<<<<<<<<

Nope not the heart transplant - not me. Not a candidate due to the other

issues.

The " stabbing " as I refer to this thing, is nasty, but it is one of the rare

medical procedures that offers almost instant relief from the symptoms and

that is what makes it worth doing.

<<<<<<<<<<<<

Yeah ~ there is always that balance of positive and negative hey... sometimes

though, I wonder what it must be like to be one of the " normals " although I

don't think I'd ever fit into that category!!

<<<<<<<<<<

Since I have dealt with the IHSS since I was 10, migraines since 12 and some

very serious injuries as well (I broke my neck at age 13). I have no concept

of what " normal " is. My sister has never been in the hospital or sick with

anything except the normal kinds of colds and such. Neither one of us can

imagine being in the others shoes.

There is more - but we will discuss the other stuff later. When something

bugs me I will mention it.

Thanks for the welcome. Most people don't know what dealing with a chronic

illness is like, or dealing with more than one. So it feels good to find a

place to give and receive that kind of support.

Jo

[Guest guest]

Hi Jo!

WELCOME!!!

"It is hard to deal with lots of things, it seems so unfair and frightening at times."

*hug* Yes.... it is horrible....

"but the migraines are the worst."

I totally relate. We have quite a few migrainers on the list too... and they are so debilitating.

"I am on disability and no longer live any semblance of a normal life."

Understand sweetie... we call everyone (as in the general public) the "normals."

"I can not make plans in advance without an alternative. I attended my son's wedding but I was so very drugged I have no recollection whatsoever."

*nods and hugs*

I don't remember my own wedding for the exact same reason. Isn't it just horrible. Lights - cant cope I live in a dark little room, sound - forget it! (Which is *THE* worst thing for me as I am a musician)

How the hell do you manage to get to the grocery store? Are you able to drive? You sound way to ill to be doing such things!

"Next week I will be having a pericardiocentesis to remove the excess fluid in the pericardial sac surrounding my heart."

Ewwwwww that sounds really horrid. You must keep us informed as to when you are there and when you are out, or we will all worry about you... It sounds really nasty. I read your profile that was sent (thought I'd replied to it but I don't remember) and you said you were waiting for a heart transplant? That must be terrifying.

"Okay, life could be worse."

Yeah ~ there is always that balance of positive and negative hey... sometimes though, I wonder what it must be like to be one of the "normals" although I don't think I'd ever fit into that category!!

Wonderful to meet you. Please feel free to write as much as you want, jump into any conversation, vent, bitch, curse, send jokes... we are here for you always. Welcome to the family!

Love Aisha.

*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Believe that there's a light at the end of the tunnel.Believe that you may be that light for someone else.- Kobi Yamada*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=* Aisha ElderwynICQ 55461955aisha@...http://www.elderwyn.com/aishaMailing list: AishaElderwyn-subscribeegroupsBeing Sick:

[Guest guest]

Welcome to our unusually painful but helpful family. Hope you feel at home

as much as the rest of us do. I am glad to meet you but sorry it has to be

because we are both in pain. If there is ever anything I can do to help you

please feel free to let me know. I am always around here somewhere.

Tina1

>From: TediBrLuv@...

>Reply-egroups

>egroups

>Subject: Introducing myself

>Date: Sat, 27 May 2000 23:57:57 EDT

>

>Hello Everyone,

>

>since I responded to the plea for Monkey Bread, I decided I might as well

>jump in and introduce myself.

>

>My name is Jo. I am 50 years old and I live in Minnesota. I am divorced

>with

>2 married sons and 2 grandkids. My brother lives with me and has joint

>custody of his 2 children so I get to do a surrogate mom thing 1/2 time.

>They are good kids and for the most part are helpful and don't make too

>much

>work for me.

>I have numerous health issues, as most everyone on the list seems to as

>well.

> It is hard to deal with lots of things, it seems so unfair and

>frightening

>at times.

>I have Idiopathic Hypertrophic SubAortic Stenosis (IHSS for short). I have

>mitral valve prolapse, a bigeminal heart rhythm and severe arrythmia. I

>have

>had one major stroke, at the age of 42, and several small ones. Diabetes

>diagnosed 10 years ago. And the worst is probably Chronic Intractable

>Migraine. I can deal with the other issues, although the IHSS is

>troublesome, but the migraines are the worst. Over four years of never

>being

>without a migraine, some days making me totally non-functioning.

>I am on disability and no longer live any semblance of a normal life. I

>can

>not make plans in advance without an alternative. I attended my son's

>wedding but I was so very drugged I have no recollection whatsoever. I

>miss

>most holidays and family events because noise triggers the migraine, and

>that

>noise can be more than 2 people talking. I can not go to church as the

>organ

>music is intolerable, as is the singing and even the general noise of the

>congregation. I go grocery shopping at 2:00 AM because the store is quiet.

>But I must wear dark glasses because the lights are too bright.

>Amazingly I do have a great relationship with a wonderful man who is ever

>so

>loving and patient and when I have good days he helps me enjoy them, always

>finding quiet restaurants and parks for us to go to.

>Next week I will be having a pericardiocentesis to remove the excess fluid

>in

>the pericardial sac surrounding my heart. He will bethere with me and it

>will help, but it is a nasty and uncomfortable procedure which I hate with

>a

>passion. But after it is done I will be able to lie flat in bed again, and

>breathe better. So it is worth it.

>

>Okay, life could be worse. When I feel good I enjoy traveling and I have a

>passion for history and genealogy. I am always thankful that I have good

>days and make the most of them.

>

>Jo

________________________________________________________________________

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[Guest guest]

Hello,

My name is Crystal and I just joined the list yesterday and have spent the

morning reading your posts. I think I've found a very wonderful and

supportive group!

I have a 4 1/2 year old daughter that has OCD. We do not have a formal

diagnosis yet but family history and day-to-day living is indication enough.

She started her ritualistic behavior and horrible separation anxiety when

she was around age 2. We took her to a behavioral therapist recommended by

our pediatrician and they were little to no help at all. They told us they

couldn't make a diagnosis of OCD until she was older and told us to work on

the separation anxiety with play therapy. We did and that symptom is much

better but has been replaced with other symptoms.

Her symptoms are saying certain phrases many times during the day and we are

to respond in a certain way or she will meltdown. This has been really

difficult for me because I know in my heart that I shouldn't be going along

with the rituals but she seems so anxious if I don't that I feel like I'm

torturing her. She will only eat about 4 things and they have to be exactly

a certain way or she will vomit them up or just meltdown to keep from eating

them. She also stares at her hands for some reason.

Since she is so young, her problems haven't been that noticeable to the

outside world until now. Playing with other children is becoming difficult

because they don't know how to respond to her ritualistic phrases and she

gets upset with them and won't play with them anymore. Someone in a post I

read this morning talked about " cocooning " with her family. That is what I'm

doing because I can't stand to watch this behavior and then watch her try

desperately to control it in front of people, fail, and then become

embarrassed. I breaks my heart. She is very intelligent and understands that

her behavior is odd.

I didn't mean to go on this long so I'll close by saying that I've ordered

Dr. Chansky's book and had it shipped next day air. I am hoping this will

help me figure out the right thing to do for my child. In the meantime, I'm

glad that I've found this list and I'm sure I'll learn a lot from all of

you.

Thanks,

Crystal

[Guest guest]

RE: Introducing myself

> -------------------------- eGroups

Sponsor -------------------------~-~>

> Visit ibelieve.com today and get a FREE portrait at Olan Mills!

> 1/7800/17/_/531051/_/969026831/

> ---------------------------------------------------------------------_

->

>

> Hello,

>

> My name is Crystal and I just joined the list yesterday and have spent

the

> morning reading your posts. I think I've found a very wonderful and

> supportive group!

>

> I have a 4 1/2 year old daughter that has OCD. We do not have a formal

> diagnosis yet but family history and day-to-day living is indication

enough.

> She started her ritualistic behavior and horrible separation anxiety

when

> she was around age 2. We took her to a behavioral therapist

recommended by

> our pediatrician and they were little to no help at all. They told us

they

> couldn't make a diagnosis of OCD until she was older and told us to

work on

> the separation anxiety with play therapy. We did and that symptom is

much

> better but has been replaced with other symptoms.

>

> Her symptoms are saying certain phrases many times during the day and

we are

> to respond in a certain way or she will meltdown. This has been really

> difficult for me because I know in my heart that I shouldn't be going

along

> with the rituals but she seems so anxious if I don't that I feel like

I'm

> torturing her. She will only eat about 4 things and they have to be

exactly

> a certain way or she will vomit them up or just meltdown to keep from

eating

> them. She also stares at her hands for some reason.

>

> Since she is so young, her problems haven't been that noticeable to

the

> outside world until now. Playing with other children is becoming

difficult

> because they don't know how to respond to her ritualistic phrases and

she

> gets upset with them and won't play with them anymore. Someone in a

post I

> read this morning talked about " cocooning " with her family. That is

what I'm

> doing because I can't stand to watch this behavior and then watch her

try

> desperately to control it in front of people, fail, and then become

> embarrassed. I breaks my heart. She is very intelligent and

understands that

> her behavior is odd.

>

Crystal,

I usually don't have much to offer on the handling of OCD behaviours

because I am new to this and my son displays different behaviours to

most on this list. However, as my son is very gifted (and 10) he knows

the compulsions are irrational (excepting the morality/confession

issues) . He tends to use a sense of humour with himself though so it

doesn't upset him. He has probably got this approach from me as I deal

with many of his oddities with humour. This requires the ability to

place oneself outside of a situation though so is developmentally

related. I have used humour for years (before I had any idea that my

son's behaviours were relted to a disorder) and he can laugh at himself.

It helps diffuse the embarrassment I feel when he does something odd in

public. I don't want to say anything specific as it might not suit your

daughters age or symptoms but it could be something for the long term if

not the present.

Good luck

Rosie

>

>

>

> You may subscribe to the OCD-L by emailing listserv@... .

In the body of your message write: subscribe OCD-L your name. You may

subscribe to the Parents of Adults with OCD List at

parentsofadultswithOCD . You may access

the files, links, and archives for our list at

. Our list advisors are

Tamar Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list

moderators are Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses,

Roman, and Jackie Stout. Subscription issues, problems, or

suggestions may be addressed to Louis Harkins, list owner, at

harkins@... .

>

>

>

[Guest guest]

Hi Crystal,

It sounds to me like you need to see a different behavioral therapist. I'm new to this myself and started my son with medication and have a first behavioral therapy appt next week. But the things you're describing about your daughter sound just like my son and there is no question he has OCD. He's 9 and I wish we would have realized it sooner. I have been reading Dr. Chansky's book and it's fabulous but I don't feel I can do it alone.

I think professional help is essential so my advice is to try another doctor.

Terry

RE: Introducing myself

Hello,My name is Crystal and I just joined the list yesterday and have spent themorning reading your posts. I think I've found a very wonderful andsupportive group!I have a 4 1/2 year old daughter that has OCD. We do not have a formaldiagnosis yet but family history and day-to-day living is indication enough.She started her ritualistic behavior and horrible separation anxiety whenshe was around age 2. We took her to a behavioral therapist recommended byour pediatrician and they were little to no help at all. They told us theycouldn't make a diagnosis of OCD until she was older and told us to work onthe separation anxiety with play therapy. We did and that symptom is muchbetter but has been replaced with other symptoms.Her symptoms are saying certain phrases many times during the day and we areto respond in a certain way or she will meltdown. This has been reallydifficult for me because I know in my heart that I shouldn't be going alongwith the rituals but she seems so anxious if I don't that I feel like I'mtorturing her. She will only eat about 4 things and they have to be exactlya certain way or she will vomit them up or just meltdown to keep from eatingthem. She also stares at her hands for some reason.Since she is so young, her problems haven't been that noticeable to theoutside world until now. Playing with other children is becoming difficultbecause they don't know how to respond to her ritualistic phrases and shegets upset with them and won't play with them anymore. Someone in a post Iread this morning talked about "cocooning" with her family. That is what I'mdoing because I can't stand to watch this behavior and then watch her trydesperately to control it in front of people, fail, and then becomeembarrassed. I breaks my heart. She is very intelligent and understands thather behavior is odd.I didn't mean to go on this long so I'll close by saying that I've orderedDr. Chansky's book and had it shipped next day air. I am hoping this willhelp me figure out the right thing to do for my child. In the meantime, I'mglad that I've found this list and I'm sure I'll learn a lot from all ofyou.Thanks,CrystalYou may subscribe to the OCD-L by emailing listserv@... . In the body of your message write: subscribe OCD-L your name. You may subscribe to the Parents of Adults with OCD List at parentsofadultswithOCD . You may access the files, links, and archives for our list at . Our list advisors are Tamar Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list moderators are Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Roman, and Jackie Stout. Subscription issues, problems, or suggestions may be addressed to Louis Harkins, list owner, at harkins@... .

[Guest guest]

Welcome Crystal,

You are fortunate that your daughter has been diagnosed and is getting

attention at such a young age!! You are wise to have recognized that not

all behavioural therapists know how to work with ocd clients in an efficient

way.

I live in a house of people with ocd and rituals used to be so ordinary

around here that no one knew they were rituals!! We now work on identifying

an OCD symptoms, externalizing it, and not providing it with the expected

response.

When I hear reasurrance seeking questions, or any anxiety around

responses, I answer once, and then remind the person they have heard it. For

example, if someone asks: What are tomorrows plans? I answer them once. The

next time they ask, I have them tell me what I said, and after that, I

remind them that they already know. I might not even answer the first or

second time if hte question is riduculous or none of their business!!

For reactions by me to fit a compulsion (being asked: Are you sure? for

example) I have learned to do the same as above. I will answer: Yes, I am

sure! But I have learned also to answer in a most ridiculous way

(Paradoxical answer). If I'm asked: Is there something coming out of the

plug? I am more likely to answer: Yes - purple turtles with sunglasses on!

This is definatly not the answer I was expected to give! In the beginning

the kids do get anxious, but in a short time they have learned that its an

OCD question and I dont answer to OCD!

My youngest, Ziv, is 11. She loves to vomit when anxious. First thing I

say to her is " BREATH " ! " Whose in charge? You or nasty ocd? " " Its ok to

worry - but lets not get too involved here! " I distract her and move her on

to reaching her goal (like going to school on time!). Your daughter has

selected 4 foods. You can explain to her that together you are going to add

one more thing, but she has to make the decision on what it will be. You may

be able to guide her choice to something nutritional, but that depends on

you and her! Once she has made a choice on her next food, you can ask her

how often she can eat it? Every meal? Once a day? How much can she eat?

etc..... slowly introduce her to the power of choice she has over what she

eats.

Having ocd is a power stuggle with your thoughts. Your daughter will grow

to understand that she can control these urges to do or not do things. There

are several childrens books that she may enjoy reading with you ( " Up and

Down the Worry Hill, A Children's Book about OBsessive-Compuslive Disorder

and its Treatment " by Aureen Pinto Wagner, Ph.D; " Blink Blink, Clop Clop:

Why Do We Do Things We Can't Stop? An OCD Storybook " , by E. Katia Mritz,

Ph.D. and Jablonsky; etc.).

Dont forget to take care of yourself!!! wendy in canada

_________________________________________________________________________

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[Guest guest]

Dear ph,

I have been in this group on and off for over a year now. Our daughter has

been diagnosed with OCD and is just beginning to acknowledge its toll on her

life (and ours as well!). I don't have any advice for you, but I just wanted

to let you know I was moved by your introduction and share your feelings of

helplessness in the face of such a ferocious affliction. And yes, there is

hope.

Regards,

[Guest guest]

Hi ph, welcome to the group!! Im sure you will find it to be an

incredible source of information, support and comfort. My daughter is 10 1/2

and diag with ocd at age 8.

Take care,

Nikki in Orlando

[Guest guest]

Dear ph, welcome!

Take a deep breath and let it out slowly. If there is a group of

supportive parents with practical advice, this is it!

Before I forget, I want to pass on the info for the " Obsessive Compulsive

Information and Support Centre, Inc. " located in Winnipeg, Manitoba. Their

telephone number is 204-772-6979, fax: 204-654-1578.

Marie Anne Reeves is the contact person I know there. She is an active

member of the OCD-L, our 'sister' list, and has tried every treatment for

ocd available to her! She regularly attends conferences with her devoted

husband, . Her email is: reeves@...

You mention many important influences in 's treatment. Recognizing

your own abilities and strengths, in my opinion, is a good conduit for

finding the best treatment. Personally, I was in a deep depression long

before anyone else here was diagnosed. It was my access to professionals

that have helped me find treatment options and educate myself on what we all

needed. During times when I dont know what to do, where to get services,

etc. I have discussed options with professionals that treat adults.

I was a social work student when I diagnosed my son, Tom, now 17, with

ocd... and interviewed various Ph.D's for treatment. Most told me meds and

that's all. My research told me that Cognitive Behavioural Therapy was the

first line of treatment for children - he was 12 yrs old at the time. I did

finally find someone, but as Tom's depression become worse, so did his ocd.

Once he became actively suicidal, we ended up accessing a psychiatrist at

the Children's Hospital of Eastern Ontario, who was willing to work in a

team with me. This doctor also diagnosed my two daughters, Adi almost 15,

and Ziv,11, with ocd and depression. Today they are both subclinical, btw!

Their dad has the same diagnosis. Remember you are the consumer, if you dont

like the way the hospital or present professionals are dealing with -

find others!

You dont mention what treatment, other than meds, your son is receiving.

Is he getting any therapy? When the school suggested that 's

emotional maturity is interfering with his learning, what did they expect

you to do about it? I'm guessing that he has had a full psycho-assessment??

Have you read info about children with bi-polar disorder? I'm sure there are

parents here who can give you web sites with basic diagnostic information.

ph, you sound tired. Are you taking care of yourself? Can the school

board or hospital supply you with a case manager/social worker to help with

and your family? Perhaps you need to stress that you need the extra

support too?? Please let us/me know if there is any way we can help.

take care, wendy, in canada (ottawa)

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[Guest guest]

what do the enzymes do?

--- Tania & <fe38@...> wrote:

> Hi, my name is Emma. I'm a 36 year old who has had

> CFS for 3 years. It started with an acute case of

> mono. Prior to CFS I was a vibrant go-getter,

> playing racquet ball 3 times a week and working as a

> nurse on a pediatric ICU. After about 3 months of

> unrelenting symptoms I began looking into natural

> alternatives for treatment. I was very skeptical

> first because it was antithetical to my western

> medicine training. I " m now a believer. My

> infectious disease doc (who does not treat me, just

> plays liaison between myself and the insurance

> company) tells me that my (although still not

> complete) is in the top 2% of the more than 200

> patients he's seen with CFS. I owe this recovery to

> all the reading I've done and to finding a couple

> really good docs that practice natural medicine.

> I'm excited to share what has worked for me and what

> I've discovered in the reading I've done, and am

> excited to hear what other people know and have

> tried. I believe that I could be within months of

> even a cure! Time will tell. At the very least,

> I'm much better than I was. When I was at my

> sickest I was basically bedridden. My mom helped me

> maintain the house, did my grocery shopping, etc.

> My recovery has been long with many ups and downs

> including 2 relapses. However, I no longer need to

> have my mom do my shopping or use a motorized cart

> or a wheelchair.

> I'm on multiple supplements to detoxify that are

> definitely working, and, as of the last week am

> taking enzymes that are allowing me to be off the

> gluten free casein free diet that I've been on for

> the last 1 1/2 years for leaky jut. I still can't

> believe that I can eat anything I want and not

> suffer the consequences, AND have my gut heal!! I'm

> also being treated for candidiasis with diflucan,

> and have dove tailed that treatment with taking

> colloidal silver which hopefully will keep the yeast

> out of my system. I know someone who cured herself

> of candidiasis with colloidal silver and

> lactobacillus. If anyone's interested let me know.

> If you choose to try colloidal silver it's important

> that you get high quality product. For the research

> I found that tells you how to intelligently choose a

> brand go to www.silver-colloids.com The brand that

> I found that fits the criteria of the research is

> from www.utopiasilver.com I'm sure that there are

> others out there. This is just the brand of which

> I'm aware.

> For the enzymes that I'm taking try

> www.houstonni.com. They're developed by Dr Devin

> Houston - a biochemist - specifically for people

> with leaky gut to help heal the gut and allow people

> to go off their very restrictive GFCF diets. It

> doesn't work for everyone, but it's miraculous for

> many. For more information check out the

> egroup .

> Anyway, I hope I didn't go on too long. I'm just

> excited about the progress I'm making and want to

> share hope with others!!

>

>

> [Non-text portions of this message have been

> removed]

>

>

> This list is intended for patients to share personal

> experiences with each other, not to give medical

> advice. If you are interested in any treatment

> discussed here, please consult your doctor.

>

>

[Guest guest]

By all means, fill us in.

A dietician just told me to start stuffing myself with Silymarin and Siberian

Ginseng. She laughed when I told her I was hestitant because I've started

Guaifenesin - she obviously doesn't know why so many FMers are succeeding with

" cough medicine. " (It may do little for my immune system, but only one month

into it, and it appears at this point to be working as advertised on the

muscles.) I would have to give it up to take herbs, but diluted homeopathics

might be OK. I was on ginseng capsules for a little bit; not sure if that's

what revved my adrenals up, because I didn't notice 'til well after I stopped

taking it and had left the winter doldrums of the east coast.

I did at one point wipe out C. Albicans with a combo of Diflucan and something

called SF722. However, in going off the diflucan, the SF wasn't enough to keep

another C. species from growing to a +4. Sporanox was eventually needed, and

gratefully received; even my liver was begging for the stuff. (That was a

kinesiology test - talk about an education in natural medicine, it blew me away.

I would've never believed it if it hadn't been done on me.)

- CDN

Tania & wrote:

> Hi, my name is Emma. I'm a 36 year old who has had CFS for 3 years. It

started with an acute case of mono. Prior to CFS I was a vibrant go-getter,

playing racquet ball 3 times a week and working as a nurse on a pediatric ICU.

After about 3 months of unrelenting symptoms I began looking into natural

alternatives for treatment. I was very skeptical first because it was

antithetical to my western medicine training. I " m now a believer. My

infectious disease doc (who does not treat me, just plays liaison between myself

and the insurance company) tells me that my (although still not complete) is in

the top 2% of the more than 200 patients he's seen with CFS. I owe this

recovery to all the reading I've done and to finding a couple really good docs

that practice natural medicine. I'm excited to share what has worked for me and

what I've discovered in the reading I've done, and am excited to hear what other

people know and have tried. I believe that I could be within months of even

> a cure! Time will tell. At the very least, I'm much better than I was. When

I was at my sickest I was basically bedridden. My mom helped me maintain the

house, did my grocery shopping, etc. My recovery has been long with many ups

and downs including 2 relapses. However, I no longer need to have my mom do my

shopping or use a motorized cart or a wheelchair.

> I'm on multiple supplements to detoxify that are definitely working, and, as

of the last week am taking enzymes that are allowing me to be off the gluten

free casein free diet that I've been on for the last 1 1/2 years for leaky jut.

I still can't believe that I can eat anything I want and not suffer the

consequences, AND have my gut heal!! I'm also being treated for candidiasis

with diflucan, and have dove tailed that treatment with taking colloidal silver

which hopefully will keep the yeast out of my system. I know someone who cured

herself of candidiasis with colloidal silver and lactobacillus. If anyone's

interested let me know. If you choose to try colloidal silver it's important

that you get high quality product. For the research I found that tells you how

to intelligently choose a brand go to www.silver-colloids.com The brand that I

found that fits the criteria of the research is from www.utopiasilver.com I'm

sure that there are others out there. This is just the

> brand of which I'm aware.

> For the enzymes that I'm taking try www.houstonni.com. They're developed by

Dr Devin Houston - a biochemist - specifically for people with leaky gut to help

heal the gut and allow people to go off their very restrictive GFCF diets. It

doesn't work for everyone, but it's miraculous for many. For more information

check out the egroup .

> Anyway, I hope I didn't go on too long. I'm just excited about the progress

I'm making and want to share hope with others!!

>

>

[Guest guest]

It's still too early to tell if the colloidal silver is going to help keep the

yeast at bay. There is a very sobering website on mercury toxicity and amalgam

removal and illness such as we are experiencing. The website is

http://www.web-light.nl/AMALGAM/EN/SCIENCE/bernie_science.html

I'm in the process of having all the mercury taken out of my mouth. The more

reading I do the more I'm convinced that this is my problem. I got sick with

this @!# one month after I had a huge filling put into my mouth. According to

the literature, the symptoms of your illness worsen for about 2 weeks after

amalgam removal due to the amount of exposure experienced as a result of the

removal process. This is exactly what is happening to me. I've had the first

of 4 sessions to remove the mercury, and I'm knocked flat. I think this speaks

to the fact that I'm on the right track.

Just having amalgams removed, however, is not enough. You must be chelated to

remove all the mercury that's in your system. This can be done either with oral

supplements or with a doc who does IV chelation. It's also EXTREMELY important

to find a dentist who knows and respects the extreme toxicity of mercury and is

very careful when removing it. Otherwise you will be exposed to a much larger

quantity of mercury and could do some damage to your body.

Apparently, the reason not everyone reacts so adversely to mercury is due to

genetics. There is evidence that illnesses and conditions like allergies,

asthma, CFS, FM, autism, lupus, parkinson's etc run in families that are more

sensitive to the damage mercury can do. Mercury is suspected to be the root of

all these conditions. Check out the website above for LOTS MORE information.

Emma

Re: Introducing myself

By all means, fill us in.

A dietician just told me to start stuffing myself with Silymarin and Siberian

Ginseng. She laughed when I told her I was hestitant because I've started

Guaifenesin - she obviously doesn't know why so many FMers are succeeding with

" cough medicine. " (It may do little for my immune system, but only one month

into it, and it appears at this point to be working as advertised on the

muscles.) I would have to give it up to take herbs, but diluted homeopathics

might be OK. I was on ginseng capsules for a little bit; not sure if that's

what revved my adrenals up, because I didn't notice 'til well after I stopped

taking it and had left the winter doldrums of the east coast.

I did at one point wipe out C. Albicans with a combo of Diflucan and something

called SF722. However, in going off the diflucan, the SF wasn't enough to keep

another C. species from growing to a +4. Sporanox was eventually needed, and

gratefully received; even my liver was begging for the stuff. (That was a

kinesiology test - talk about an education in natural medicine, it blew me away.

I would've never believed it if it hadn't been done on me.)

- CDN

Tania & wrote:

> Hi, my name is Emma. I'm a 36 year old who has had CFS for 3 years. It

started with an acute case of mono. Prior to CFS I was a vibrant go-getter,

playing racquet ball 3 times a week and working as a nurse on a pediatric ICU.

After about 3 months of unrelenting symptoms I began looking into natural

alternatives for treatment. I was very skeptical first because it was

antithetical to my western medicine training. I " m now a believer. My

infectious disease doc (who does not treat me, just plays liaison between myself

and the insurance company) tells me that my (although still not complete) is in

the top 2% of the more than 200 patients he's seen with CFS. I owe this

recovery to all the reading I've done and to finding a couple really good docs

that practice natural medicine. I'm excited to share what has worked for me and

what I've discovered in the reading I've done, and am excited to hear what other

people know and have tried. I believe that I could be within months of even

> a cure! Time will tell. At the very least, I'm much better than I was.

When I was at my sickest I was basically bedridden. My mom helped me maintain

the house, did my grocery shopping, etc. My recovery has been long with many

ups and downs including 2 relapses. However, I no longer need to have my mom do

my shopping or use a motorized cart or a wheelchair.

> I'm on multiple supplements to detoxify that are definitely working, and,

as of the last week am taking enzymes that are allowing me to be off the gluten

free casein free diet that I've been on for the last 1 1/2 years for leaky jut.

I still can't believe that I can eat anything I want and not suffer the

consequences, AND have my gut heal!! I'm also being treated for candidiasis

with diflucan, and have dove tailed that treatment with taking colloidal silver

which hopefully will keep the yeast out of my system. I know someone who cured

herself of candidiasis with colloidal silver and lactobacillus. If anyone's

interested let me know. If you choose to try colloidal silver it's important

that you get high quality product. For the research I found that tells you how

to intelligently choose a brand go to www.silver-colloids.com The brand that I

found that fits the criteria of the research is from www.utopiasilver.com I'm

sure that there are others out there. This is just the

> brand of which I'm aware.

> For the enzymes that I'm taking try www.houstonni.com. They're developed

by Dr Devin Houston - a biochemist - specifically for people with leaky gut to

help heal the gut and allow people to go off their very restrictive GFCF diets.

It doesn't work for everyone, but it's miraculous for many. For more

information check out the egroup .

> Anyway, I hope I didn't go on too long. I'm just excited about the

progress I'm making and want to share hope with others!!

>

>

[Guest guest]

Hi,

I wanted to ask how severe you food sensitivities are or have been.

Do you have an increased pulse when you eat a food that your

sensitive to as a symptom? Are you sure the enzymes are responsible

for your ability to now eat these foods? Many times you can just

stop eating the food(s) you're sensitive to for a while and this will

allow you to introduce them back into your diet. Had you tried any

other types of enzymes before you tried the peptizyde? Keep us

posted on your results. Thanks

Tania and wrote:

> I'm on multiple supplements to detoxify that are definitely

working, and, as of the last week am taking enzymes that are allowing

me to be off the gluten free casein free diet that I've been on for

the last 1 1/2 years for leaky jut. I still can't believe that I can

eat anything I want and not suffer the consequences, AND have my gut

heal!!

[Guest guest]

I can't say that my pulse noticibly increases when I eat foods I'm sensitive to.

What does happen is

1.. bloating

2.. headache

3.. dizziness

4.. diarrhea

5.. food cravings

6.. mood swings

7.. increased mental cloudiness

8.. increased fatigue

9.. decreased stamina

10.. Nasal congestion

I know that my being able to eat the foods that I'm sensitive to is not because

I've been off them for awhile because if I slip up and forget to take the

enzymes when I eat all the symptoms of the sensitivities revisit. It's

definitely the enzymes.

No, I've never taken any other enzymes before. You might want to visit the

egroup to get more information. Many mothers of autistic

children who are on VERY STRINGENT DIETS are now able to eat more foods, no

react to them, and improve their leaky guts and behavioral problems.

Besides being able to eat the foods that I haven't been able to eat (except

for occassional dietary infractions every 1-3 weeks), I'm finally relaxed,

sleeping well, and no more food cravings. These enzymes don't help everyone

though. According to Dr Houston ( the creator of these enzymes) for

approximately every 50 people with leaky gut that they help, there are 2 people

that they don't help. These enzymes will help only if the specific protein that

you react to is gluten and/or casein. The easiest way to tell if these are the

proteins that give you problems is to try the enzymes and see if they help.

A typical response to first taking the enzymes (It happened to me) is to

actually have an increase of diarrhea for the first few days. This is the

enzymes actually clearing out your gut of undigested debris. Afterward stools

return to normal (or become normal if they haven't been normal).

I'm sorry for going on so long about this. I'm just really excited at how

well they're working for me and the hope they are giving me about my gut

actually healing. It's so nice to finally be able to eat a piece of pizza ( I

had some tonight) and know that the next day I'm not going to feel lousy.

Re: Introducing myself

Hi,

I wanted to ask how severe you food sensitivities are or have been.

Do you have an increased pulse when you eat a food that your

sensitive to as a symptom? Are you sure the enzymes are responsible

for your ability to now eat these foods? Many times you can just

stop eating the food(s) you're sensitive to for a while and this will

allow you to introduce them back into your diet. Had you tried any

other types of enzymes before you tried the peptizyde? Keep us

posted on your results. Thanks

Tania and wrote:

> I'm on multiple supplements to detoxify that are definitely

working, and, as of the last week am taking enzymes that are allowing

me to be off the gluten free casein free diet that I've been on for

the last 1 1/2 years for leaky jut. I still can't believe that I can

eat anything I want and not suffer the consequences, AND have my gut

heal!!

[Guest guest]

Hi,

I just recently visited the egroup but after reading

several posts became turned off to the fact that the list is run and

ownded by Dr. Houston, the creator and marketer of these enzymes.

The list seems strongly biased toward his enzymes. There are many

different enzymes out there used to treat leaky gut and other

digestive problems. Last I heard, Cheney was recommending Inflazyme,

Similase, or Ultrazyme along with Betaine. I've heard from other

sources that a new formulation EnzymeAid is pretty strong. Which is

best is what I'm trying to figure out. I suffer from leaky gut and

food sensitivities. I have gotten a little improvement using

Wobenzyme and would like to know if anyone out there suffering from

either of the above has gotten significant improvement using enzymes

and if so which brand or kind. I hope this information will be

helpful to others as well but feel free to backchannel me. Kindiest

regards,

Tania & wrote:

> No, I've never taken any other enzymes before. You might want to

visit the egroup to get more information.

Many mothers of autistic children who are on VERY STRINGENT DIETS are

now able to eat more foods, no react to them, and improve their leaky

guts and behavioral problems.

[Guest guest]

Yes, Dr Houston created the board. However, he is more than

eager to discuss other manufacurer's products. He has made it clear that his

mission is to help people with leaky gut and food sensitivities in any way he

can. I hope you don't decide to rule his product out simply because he started

that board. The enthusiasm among parents and myself after using his enzymes is

sincere. Who wouldn't be excited at being able to eat the foods that have been

taboo for so long, while simultaneously healing their gut? Don't mistake

genuine enthusiasm for a product that actually works for slanted dishonest

commercialism. I would'nt want you to miss out on a chance to heal!

Re: Introducing myself

Hi,

I just recently visited the egroup but after reading

several posts became turned off to the fact that the list is run and

ownded by Dr. Houston, the creator and marketer of these enzymes.

The list seems strongly biased toward his enzymes. There are many

different enzymes out there used to treat leaky gut and other

digestive problems. Last I heard, Cheney was recommending Inflazyme,

Similase, or Ultrazyme along with Betaine. I've heard from other

sources that a new formulation EnzymeAid is pretty strong. Which is

best is what I'm trying to figure out. I suffer from leaky gut and

food sensitivities. I have gotten a little improvement using

Wobenzyme and would like to know if anyone out there suffering from

either of the above has gotten significant improvement using enzymes

and if so which brand or kind. I hope this information will be

helpful to others as well but feel free to backchannel me. Kindiest

regards,

Tania & wrote:

> No, I've never taken any other enzymes before. You might want to

visit the egroup to get more information.

Many mothers of autistic children who are on VERY STRINGENT DIETS are

now able to eat more foods, no react to them, and improve their leaky

guts and behavioral problems.

[Guest guest]

Last I heard, Cheney was recommending Inflazyme,

Similase, or Ultrazyme along with Betaine. I've heard from other sources

that a new formulation EnzymeAid is pretty strong.....I have gotten a little

improvement using

Wobenzyme and would like to know if anyone out there suffering from either

of the above has gotten significant improvement using enzymes and if so

which brand or kind....

I am very intolerant of any plant enzymes I have tried, and finally

connected that information with my mold allergy testing - I am very allergic

to any kind of mold or fungi, including aspergillus, which any plant enzyme

that I've tried and gotten worse with invariably has to some degree been

derived from. Because of my mold allergies, Dr. Cheney has suggested that I

stick with Ultrazyme, although he clearly likes plant enzymes better. The

Ultrazyme has helped a lot, I believe. Though I still have some bloating

after meals, I rarely have any belching or gas, or other food associated

problems that aren't allergic in nature. I have lots of food allergies, but

can't stay away from the numerous numbers of foods to which I am allergic or

I would weigh even less than I do now. But the allergic symptoms I generally

recognize readily enough. (I develop breathing difficulties or fall asleep

on the spot for about 30 minutes). Except on rare occasions, the hives after

I eat have also disappeared. I do take Betaine with my meals also, per

Cheney's recommendations. As expensive as enzymes have become, if they are

plant based I stay away. have thrown too many bottles out, so for those of

you with difficulties with enzymes, you might want to consider your mold

allergy status, or your candida status. Candida is a fungus, to which I am

allergic to as well as crawling with.

Donna in NC

[Guest guest]

At 10:33 AM 7/3/01 -0700, you wrote:

>Hello everyone,

>

>My name is Aimee, I'm 32, living in California with my (hm. what to call

>

>I think we've pretty much decided not to vaccinate . I cancelled her

>two-month appointment the other day. All they would do is weigh her (hello,

>she's got big rolls of sweet baby fat, she's gaining weight just fine) and

>try to talk me into letting them jab her, so I thought I'd save my $10 and

>the trouble of taking her out in this heat in our un-air-conditioned car!

>I'm really doubting all these well-baby visits are necessary anyway. I saw

>the other day that there are about 10 recommended well-baby visits in the

>first two years. I don't really understand why a healthy baby needs to see

>the doctor so much except I noticed the well-baby schedule and the

>vaccination schedule are suspiciously similar.

Yes.......and on the autism list we have a sad (but true) joke that goes:

What is a well baby visit?It's where you take a well baby into the doctor,

the baby gets his shots, and is never well again!!!

[Guest guest]

Welcome Aimee, just in case you haven't seen the following sources for a

doctor search, here they are:

www.ACAM.org

www.alternativemedicine.com

www.healthy.net

www.healthmall.com

ask for referrals at health food stores and direct entry midwives

call Mothering Magazine - they have a database of such docs recommended by

their readers

Kathleen

In a message dated 7/3/2001 7:29:06 PM Central Daylight Time,

aimee@... writes:

> Hello everyone,

>

> My name is Aimee, I'm 32, living in California with my (hm. what to call

> him now, we're not married but we have a baby, i used to just say my

> boyfriend, but that sounds so silly now we're parents *grin*) SO, Ed, and

> our 8 week-old daughter .

>

> I think we've pretty much decided not to vaccinate . I cancelled her

> two-month appointment the other day. All they would do is weigh her (hello,

> she's got big rolls of sweet baby fat, she's gaining weight just fine) and

> try to talk me into letting them jab her, so I thought I'd save my $10 and

> the trouble of taking her out in this heat in our un-air-conditioned car!

> I'm really doubting all these well-baby visits are necessary anyway. I saw

> the other day that there are about 10 recommended well-baby visits in the

> first two years. I don't really understand why a healthy baby needs to see

> the doctor so much except I noticed the well-baby schedule and the

> vaccination schedule are suspiciously similar.

>

> I'm wondering if anyone knows of a non-vaxing pediatrician (or general

> family) or one who is at least sympathetic/supportive in our area? We live

> in San , we could drive a bit for the right doctor, though. Or, maybe

> just advice on how to FIND such a doctor?

>

> Thanks, and Happy Tuesday!

>

> peace,

> Aimee

>

>

>

>

>

>

[Guest guest]

In a message dated 7/3/01 5:29:03 PM Pacific Daylight Time,

aimee@... writes:

> I'm wondering if anyone knows of a non-vaxing pediatrician (or general

> family) or one who is at least sympathetic/supportive in our area? We live

> in San , we could drive a bit for the right doctor, though. Or, maybe

> just advice on how to FIND such a doctor?

>

> Thanks, and Happy Tuesday!

>

> peace,

> Aimee

>

>

>

>

>

>

HI Aimee,

I live in San Diego, I'm not sure how far away you are from here. I have an

almost 2 year old little boy who has been to a " regular " doctor only twice -

there really is no need to go. I have taken him to see a Homeopath up in

Escondido a few times, and he did see a midwife for his weigh ins when he was

really little.

If Escondido is not to far - let me know and I'll give you the homeopaths

details, his name is Mann and he is wonderful.....

Chelly

San Diego, CA

Mommy to Trenton 8/19/99 - No Shots!

" Time may be a great healer, but it's a lousy beautician. "

[Guest guest]

Chelly wrote:

> HI Aimee,

> I live in San Diego, I'm not sure how far away you are from here.

Thank you so much Chelly. San is pretty far, near San Francisco. But

we're planning to move to Southern Calif. in the next year, probably to

Temecula, which I think is fairly close. If we do, I'll definitely look up

Dr. Mann.

peace,

Aimee