Newbie

[Guest guest]

Meg,

I do not want to argue your Drs feelings but I know if I am stressed I

hurt and all I want to do is take a pain pill and sleep.You are not whining,

that is what this group is all about, understanding how each others and be

here to support one another. I was kinda forced to take long term disability

but I am getting used to being off work and trying to come up with things

that keep me busy. Is something to think about. I actually have started to

think my boss made me do this out of ccaring for me and not just wanting to

get my sick behind outta there..

Heidi M

On 1/7/08, megsbyte <megsbyte@...> wrote:

>

> Heidi,

> Ok, this is going to take some doing, but I have an hour commute

> each way and since I work for the government, nothing but stress. Is

> stress a component of RA or does it make things worse? My doc didn't

> seem to think stress had any impact. Sorry if I sound like I'm

> whining, but I'm starting to think I'll have to go on disability if I

> can't get this under control.

>

> Meg in MO

>

>

> > >

> > > Hi all,

> > > Have just joined this group looking for information on RA. I've

> been

> > > diagnosted since August and am on methotrexate. Some days I feel

> fine,

> > > then others I feel like I can bearly move. This past weekend was

> > > terrible. The pain is mostly in my hands, feet and knees, but

> over the

> > > weekend it seemed as though my back was involved too. I now feel

> as

> > > though my feet are made of glass and are breaking with every move.

> > > I've also developed a rash. My husband has been wonderful, but I

> miss

> > > being able to move freely. Any suggestions would be greatly

> > > appreciated.

> > >

> > > Meg in MO

> > >

> > >

> > >

> >

> >

> >

[Guest guest]

Hi Meg, I imagine stress, like all things, makes everything worse. It's

impossible to be without stress entirely, but I think there are times that it's

more intense than others, and that might lead to a flare. I first became

symptomatic with RA when I was proposing my dissertation. It simmered for a few

years after that while I was on high dose NSAIDs. Then I had two major

(federal) job changes and two moves that took us from the west coast to the east

coast, and that led to the flare that prompted diagnosis. Now I know that

exercise, rest, and healthy emotional expression are important in managing my

RA. Disability is always an option, and for some, a necessity, but for me I am

determined to always work in some capacity. I define myself by the work that I

do and to give that up would mean that RA would have won. My favorite prof in

college died of RA and continued to teach despite being in what must have been

horrible pain. I offer my work

during any flares to his memory. Good luck and I hope you feel better, Kate F

[ ] Re: Newbie

Heidi,

Ok, this is going to take some doing, but I have an hour commute

each way and since I work for the government, nothing but stress. Is

stress a component of RA or does it make things worse? My doc didn't

seem to think stress had any impact. Sorry if I sound like I'm

whining, but I'm starting to think I'll have to go on disability if I

can't get this under control.

Meg in MO

> >

> > Hi all,

> > Have just joined this group looking for information on RA. I've

been

> > diagnosted since August and am on methotrexate. Some days I feel

fine,

> > then others I feel like I can bearly move. This past weekend was

> > terrible. The pain is mostly in my hands, feet and knees, but

over the

> > weekend it seemed as though my back was involved too. I now feel

as

> > though my feet are made of glass and are breaking with every move.

> > I've also developed a rash. My husband has been wonderful, but I

miss

> > being able to move freely. Any suggestions would be greatly

> > appreciated.

> >

> > Meg in MO

> >

> >

> >

>

>

>

[Guest guest]

Hi Meg!

I have FMS and RA and anytime I am under stress my

health takes a beating. Unfortunately, I also suffer

from anxiety. A few things I have found to help with

stress are music therapy (any kind you like

particularly relaxing), taking deep breaths a few

times a day, and relaxation tapes.

--- megsbyte <megsbyte@...> wrote:

> Heidi,

> Ok, this is going to take some doing, but I have

> an hour commute

> each way and since I work for the government,

> nothing but stress. Is

> stress a component of RA or does it make things

> worse? My doc didn't

> seem to think stress had any impact. Sorry if I

> sound like I'm

> whining, but I'm starting to think I'll have to go

> on disability if I

> can't get this under control.

>

> Meg in MO

>

>

> > >

> > > Hi all,

> > > Have just joined this group looking for

> information on RA. I've

> been

> > > diagnosted since August and am on methotrexate.

> Some days I feel

> fine,

> > > then others I feel like I can bearly move. This

> past weekend was

> > > terrible. The pain is mostly in my hands, feet

> and knees, but

> over the

> > > weekend it seemed as though my back was involved

> too. I now feel

> as

> > > though my feet are made of glass and are

> breaking with every move.

> > > I've also developed a rash. My husband has been

> wonderful, but I

> miss

> > > being able to move freely. Any suggestions would

> be greatly

> > > appreciated.

> > >

> > > Meg in MO

> > >

> > >

> > >

> >

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

________________________________________________________________________________\

____

Looking for last minute shopping deals?

Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

[Guest guest]

Welcome aboard, Jere. This is a great group for support, and keeps

us well educated about these autoimmune diseases.

You give very good advice for a newbie.

Sue

On Saturday, February 2, 2008, at 03:36 PM, Jere McFarland wrote:

>

> My point of all this is if you don't think you are being treated

> properly, find someone else. My Doc told me that Tricare, my

> insurance from Navy Retirement was the best at paying for meds. None

> of his patients have ever had a prescription refused.

[Guest guest]

My name is Ann.i " m also 55 i had ra since i was 32.this is the first year i

had to stop work

due to ra. i notice after i walk a little to far my ra seems to flare up

more.but i

keep going.-20 is a little to cold for me.here its 10 to 15 degree.I " m on

enbrel for the

last 10 years,not working like it did,tryed humira side effects to bad for me.

i don't

post much. until later

ann

helric6 <helric6@...> wrote:

Good afternoon to all. My name is , a 55 yr old sonar

technician currently retired due to RA. I was diagnosed with RA back

in 96 and have been of of work since then. Over the years, I have

gradually become somewhat better, but recently I have had flare-ups

with low grade fevers, chills and joint aches.....you know, the usual.

I was wondering if anyone has seen a tendency to have a flare-up after

exercise (I have done some snow shoveling at a snails pace)or if the

cold (it is -10 right now and was -20 overnight) plays a part in the

ongoing fight. BTW, I usually do not post but have decided that

lurking was not enough. Until next time.

D, Belleville

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

Never miss a thing. Make your homepage.

[Guest guest]

-Hi Janik,

Congrats on becoming a mom and I totally understand your fear. I'm new here

also and I

really hope this is not RA for you and just pain from hypothyroid. I'm

terrified also being

the mom of two kids, ages 6 and 9. I told my daughter no sports because I am

ready for

BED at 7PM. Clelbrex helps my pain quite a bit. I take 400mg.

Please let us know what you discover and I'll be sending healing thoughts your

way.

-- In , " Janick Masse " <janou_pou@...> wrote:

>

> Hello to all!

>

> I'm a newbie to the list, but I have been lurking for the last few

> days, and have got to " know " some of you...

>

> Some info about me. I'm 31, mother of a wonderful 9 month old baby

> boy and working as a pathologist (laboratory physician working mostly

> with a microscope) in a large canadian university hospital. I was

> diagnosed last week with severe hypothyroidism. However, I came to

> clinical attention for a severe (unable to walk or get dressed),

> abrupt onset, polyarthritis. Although I was told that polyarthralgias

> are frequent in hypothyroids, according to the rhumatologist,

> arthritis (ie objective synovitis with arthralgias) is not at all

> typical of hypothyroidism. Hence, I'm presently under investigation

> for probable rheumatoid arthritis, with a differential diagnosis of

> lupus or rheumatic fever. The rhumatologist has put me on vioxx 50 mg

> a day (until his clinical diagnosis is confirmed), which I have to

> taper down tomorrow to 25 mg a day. The vioxx diminished my symptoms

> about 80% until 2 days ago. The pains and stiffness are getting

> progressively worse, and I'm really scared of lowering the dose of

> meds... The rhumatologist prescribed prednisone " just in case " I

> might need it before my next visit (scheduled for next Tuesday). I

> took the week off from work last week, and came back to work today

> (where I am as I type).

>

> I guess what I'm looking for here is moral support (cuz I'm really

> scared that this diagnosis will ruin my career) and ideas on how to

> alleviate the pain (other than medications).

>

> Janick

> from Montreal, Canada

>

[Guest guest]

Hi Pam!

Welcome to the group:) I am 36 and have FMS and RA. I

am treated at U of M hospital. I take Plaquenil,

Sulfasalazine, will be starting Mobic as a new NSAID

for my RA. I have FMS too and take flexeril, lunesta,

ultram ER, and Effexor. My next step in my treatment

plan is Enbrel. It was supposed to be Methotrexate

but because I have had abnormally elevated liver

functions since 1999 (before I became ill and began

taking meds) I will not be able to take that

treatment. I don't have any experience with Celebrex.

I have however had cortisone injections for my knees

as I have bilateral joint effusions. They will only

give me one every six months due to damage it can

cause to bones. I know some individuals who were

getting cortisone shots in FMS trigger points but I'm

not sure how they did that as my treating hospital

says only once every six months. When I did get them,

they seemed to help for maybe a week and then I was

right back to where I was before

--- Pam Hunt <pamhunt56@...> wrote:

> Hi everyone,

> Thanks for letting me join your group. I'm 51 years

> old. I live in NC

> with my two sons and six dogs. I was diagnosed with

> RA and OA eight

> years ago. I take Plaquenil, Celebrex, Methotrexate,

> and Folic Aid and

> Glucosamine. I also use Fentanyl pain patches and

> Percocet for

> breakthrough pain. I'm supposed to go to my

> Rheumatologist tomorrow and

> I had a few questions I was hoping you could help me

> with. I started

> seeing my doctor's PA about a year ago. I told him

> the pain had

> increased in my hands and he told me to increase the

> Celebrex from one

> to two a day. I read somewhere that it you take more

> than one Celebrex

> it puts you at risk for heart problems. The other

> question is about

> cortisone shots. My doctor said that I could get

> them put in my knees

> every three months. But my sister-in-law told me

> that getting the shots

> too often can make your bones soft. Thanks for any

> help you can give me.

> Pam

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Hi ,

Thanks for the reply. I'm going to start getting the cortisone shot

every six months then. In my case they seem to help a lot. I haven't

been to my Rheumatologist in six months because of financial problems.

I'm sure he's going to chew me out over it when I go see him today. It

takes 45 minutes to get to his office and these high gas prices aren't

helping matters either. My PCP has been doing my bloodwork to check for

liver functions and then faxing him the results. I've had a bloodclot in

my leg since 2002 and have to be on a blood thinner. I have to go every

month to have that checked anyway, so every three months they check my

liver functions. That cuts out the office visit co-pay and gas expense.

I have thought about doing Enbrel but I don't know if my insurance would

cover it. I was using the Duragesic pain patches, but after the first of

the year I had to go to the generic pain patches. They don't work as

good as the name brand for some reason. I can still get the name brand

if I want to pay a $90.00 co-pay. He started me out on 4 Methotrexate a

week. So he will probably increase it before trying something else

anyway.

>

> > Hi everyone,

> > Thanks for letting me join your group. I'm 51 years

> > old. I live in NC

> > with my two sons and six dogs. I was diagnosed with

> > RA and OA eight

> > years ago. I take Plaquenil, Celebrex, Methotrexate,

> > and Folic Aid and

> > Glucosamine. I also use Fentanyl pain patches and

> > Percocet for

> > breakthrough pain. I'm supposed to go to my

> > Rheumatologist tomorrow and

> > I had a few questions I was hoping you could help me

> > with. I started

> > seeing my doctor's PA about a year ago. I told him

> > the pain had

> > increased in my hands and he told me to increase the

> > Celebrex from one

> > to two a day. I read somewhere that it you take more

> > than one Celebrex

> > it puts you at risk for heart problems. The other

> > question is about

> > cortisone shots. My doctor said that I could get

> > them put in my knees

> > every three months. But my sister-in-law told me

> > that getting the shots

> > too often can make your bones soft. Thanks for any

> > help you can give me.

> > Pam

> >

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi ,I am from NC also,GO TARHEELS! I took celebrex several yrs ago,but had to

stop due to stomache upset,so I was given steroid injections in my knees.They

didn't help much so I talked to my orthopedic guy and he had a brace made for my

knee that takes the pressure off the part of the knee that has damage(on mine it

is the inside).I t is big with metal bars and velco straps,and was hard to get

used to wearing but it has worked for me.I haven't had a steroid injection in

2yrs.The pain isn't gone but is manageable.I would recomend that anyone with

joint damage to see an orthopediac md.Hope this helps:)Sherry

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

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Hi Sherry,

I'm sorry it took so long to reply. After going to the RA doctor ( which

took about 3 hours including travel time) and running a few errands, I

was dead tired when I got home. I talked to my doctor about trying a

different med that was cheaper than Celebrex, but he said Celebrex is

the only one I can take with my blood thinner. He didn't increase the

Methotrexate, which I was glad of, I'm still on four a week. He said

there wasn't much swelling in my hands right now. But they still hurt

off and on. I was in remission for four months one time. That was really

great until it came back. I didn't get any shots in my knees yesterday

either. I used to wear one of those braces on my left knee. It had the

metal strips and velcro straps. My doctor wrote a prescription for it

and I got it at a medical supply store. It helped a lot, but it was very

hot and impossible to bend my knee. You've got me thinking about wearing

again. I've still got it somewhere. Of course if I could lose some

weight that would probably help too. But that's easier said than done.

I like to watch basketball games. It's one of the few things that I can

do without leaving the house. Although I will miss most of the ACC

Tournament because I have to work this weekend. I live in Lexington,

(Tyro) located in son County. Have you ever heard of it?

Pam

--- In , sherry elkins <se54summers@...>

wrote:

>

> Hi ,I am from NC also,GO TARHEELS! I took celebrex several yrs ago,but

had to stop due to stomache upset,so I was given steroid injections in

my knees.They didn't help much so I talked to my orthopedic guy and he

had a brace made for my knee that takes the pressure off the part of the

knee that has damage(on mine it is the inside).I t is big with metal

bars and velco straps,and was hard to get used to wearing but it has

worked for me.I haven't had a steroid injection in 2yrs.The pain isn't

gone but is manageable.I would recomend that anyone with joint damage to

see an orthopediac md.Hope this helps:)Sherry

>

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

> Looking for last minute shopping deals? Find them fast with

Search.

>

>

[Guest guest]

Hey Pam,Glad to meet you.I don't know where Lexington is but I'll look it

up.The leg brace was the same for me,but you may need it adjusted if it doesn't

feel right.I had to take mine back a couple of times,before i got it right. I

am 57 and have had RA since I was 38.Every time I read posts here its hard not

to reply and say,thats what happened to me ,I've got all those symptoms ,my

tests are all just the same!!! At this point in my life I am pretty much

disabled.I can't walk very far but use a walker when I do have to go out. I have

been on all first,second,and some third line treatments. I started Orencia

several months ago,and it seemed hopeful,then I got a thrush infection from my

mouth ,down my esophagus and into my stomache.So stopped,Orencia to get

treatment for fungal infection:( Now that is cleared,I will try Orencia again.

Like every body else here,I am always hopeful that some relief is just around

the corner. Take care ,Sherry PS. I live in

Wilmington,New hanover Co.

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

Never miss a thing. Make your homepage.

[Guest guest]

Hi Sherry,

You have had to suffer through the pain of RA for almost 20 years. I

don't know how you and the others in this group deal with RA for so

long. I know you have to deal with it the best you can because you don't

have any other choice. I've only had it for 8 years and I get

discouraged because of the everyday pain and not being able to do the

things I used to do. Not to mention being so tired ALL the time, even

when I first get up in the morning. I looked up New Hanover County and

you live a long way from where I live. I used to take my vacation in

Emerald Isle near et County. You live a couple of counties below

it. I don't take vacations anymore because my knees hurt if I drive for

a long period of time. I thought about trying one of those new drugs but

I was worried about the side effects. So for now I will stay on what I'm

taking now. I had a mammogram done on 03/06 that came back abnormal. The

first time in 10 years. I have to go Monday to have another mammogram

done, followed by a ultrasound if it shows the same thing. I'm trying to

stay positive about it and not worry about having breast cancer, but

it's not easy. Take care.

Pam

--- In , sherry elkins <se54summers@...>

wrote:

>

> Hey Pam,Glad to meet you.I don't know where Lexington is but I'll

look it up.The leg brace was the same for me,but you may need it

adjusted if it doesn't feel right.I had to take mine back a couple of

times,before i got it right. I am 57 and have had RA since I was

38.Every time I read posts here its hard not to reply and say,thats what

happened to me ,I've got all those symptoms ,my tests are all just the

same!!! At this point in my life I am pretty much disabled.I can't

walk very far but use a walker when I do have to go out. I have been on

all first,second,and some third line treatments. I started Orencia

several months ago,and it seemed hopeful,then I got a thrush infection

from my mouth ,down my esophagus and into my stomache.So stopped,Orencia

to get treatment for fungal infection:( Now that is cleared,I will try

Orencia again. Like every body else here,I am always hopeful that some

relief is just around the corner. Take care ,Sherry PS. I live in

> Wilmington,New hanover Co.

>

>

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

> Never miss a thing. Make your homepage.

>

>

[Guest guest]

I'll pray for you good-luck. 8 years is still so long I know I've

said it before and I'll say it again

HOW DO YOU GUYS DO IT?????

Well keep us posted. I'm sure everything will turn out ok!

> >

> > Hey Pam,Glad to meet you.I don't know where Lexington is but

I'll

> look it up.The leg brace was the same for me,but you may need it

> adjusted if it doesn't feel right.I had to take mine back a couple

of

> times,before i got it right. I am 57 and have had RA since I was

> 38.Every time I read posts here its hard not to reply and

say,thats what

> happened to me ,I've got all those symptoms ,my tests are all just

the

> same!!! At this point in my life I am pretty much disabled.I

can't

> walk very far but use a walker when I do have to go out. I have

been on

> all first,second,and some third line treatments. I started Orencia

> several months ago,and it seemed hopeful,then I got a thrush

infection

> from my mouth ,down my esophagus and into my stomache.So

stopped,Orencia

> to get treatment for fungal infection:( Now that is cleared,I will

try

> Orencia again. Like every body else here,I am always hopeful that

some

> relief is just around the corner. Take care ,Sherry PS. I live in

> > Wilmington,New hanover Co.

> >

> >

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

> > Never miss a thing. Make your homepage.

> >

> >

[Guest guest]

Hi, .

I have two sons, one with Asperger's and one with mild/moderate autism. We've

been with Dr. G since the end of January. So far, both boys have made great

improvement on the protocol. Both boys have a seizure disorder and food

allergies. In addition, my middle son Noah who is most severely affected by

autism, has a neurological condition called cyclical vomiting syndrome (throws

up one week out of the month) and severe migraines associated with the CVS. He

was diagnosed last September at UCLA and we were told he would probably always

have the CVS and the migraines. About two months into the protocol, the CVS

stopped completely (he had been vomiting as often as every two weeks for the

past two years), and he's only had two migraines since February. Our sons'

health and quality of life have vastly improved and we feel so blessed.

Noah has made tremendous strides in socialization and in language since

starting the protocol. We went the supplement route when he was younger, but he

was a non responder. I didn't realize how much of a non responder until we took

him off all of the supplements and no difference in behavior, language, etc.

I can't emphasize enough how grateful we are to have found and Dr. G.

Good luck,

Robyn

mum04 <mum04@...> wrote:

Hi all,

I discovered this site by accident after my ds had a blood test

requested by DAN Dr for Neuroimunology Autism Panel A. Wanted to learn

more about this test and I ended up eventually after many hours here,

which I am delighted as I know my son's damage/autism is from the MMR,

he stopped speaking the day he had it (6 days after his 1st birthday).

He never said another word for over two years as a result of months of

ABA. I only started DAN input last week after spending a year worrying

about giving my son anyother things....terrified of it happening again.

I do not know anything at all about protocol how it works etc,.

Can someone point me in the right direction please to help me learn

about this to me new and possibly best therapy my son needs.

I would love to here other parents stories how methods/therapy has

helped their own children to get better.

x

[Guest guest]

Hi ,

Welcome! This list very recently had this same thread. If you search the

archives back 10-14 days you should be able to find tons of info and

stories.

Kristy

From: [mailto: ] On Behalf Of Robyn

& Greg Coggins

Sent: Sunday, June 29, 2008 1:05 PM

Subject: Re: Newbie

Hi, .

I have two sons, one with Asperger's and one with mild/moderate autism.

We've been with Dr. G since the end of January. So far, both boys have made

great improvement on the protocol. Both boys have a seizure disorder and

food allergies. In addition, my middle son Noah who is most severely

affected by autism, has a neurological condition called cyclical vomiting

syndrome (throws up one week out of the month) and severe migraines

associated with the CVS. He was diagnosed last September at UCLA and we were

told he would probably always have the CVS and the migraines. About two

months into the protocol, the CVS stopped completely (he had been vomiting

as often as every two weeks for the past two years), and he's only had two

migraines since February. Our sons' health and quality of life have vastly

improved and we feel so blessed.

Noah has made tremendous strides in socialization and in language since

starting the protocol. We went the supplement route when he was younger, but

he was a non responder. I didn't realize how much of a non responder until

we took him off all of the supplements and no difference in behavior,

language, etc.

I can't emphasize enough how grateful we are to have found and Dr. G.

Good luck,

Robyn

mum04 <mum04@... <mailto:mum04%40> > wrote:

Hi all,

I discovered this site by accident after my ds had a blood test

requested by DAN Dr for Neuroimunology Autism Panel A. Wanted to learn

more about this test and I ended up eventually after many hours here,

which I am delighted as I know my son's damage/autism is from the MMR,

he stopped speaking the day he had it (6 days after his 1st birthday).

He never said another word for over two years as a result of months of

ABA. I only started DAN input last week after spending a year worrying

about giving my son anyother things....terrified of it happening again.

I do not know anything at all about protocol how it works etc,.

Can someone point me in the right direction please to help me learn

about this to me new and possibly best therapy my son needs.

I would love to here other parents stories how methods/therapy has

helped their own children to get better.

x

[Guest guest]

We are starting the protocol in Sept.  I found the website

www.neuroimmunedr.com and the www.nnyautismcenter.com to be very informative and

helpful.  It sounded like you were on another website. 

 

Also- did you mean your son started talking after 2 years of ABA or did not talk

for 2 years because of the therapy?  Please clarify this when you can.  Thanks.

Angie

From: mum04 <mum04@...>

Subject: Newbie

Date: Sunday, June 29, 2008, 4:59 AM

Hi all,

I discovered this site by accident after my ds had a blood test

requested by DAN Dr for Neuroimunology Autism Panel A. Wanted to learn

more about this test and I ended up eventually after many hours here,

which I am delighted as I know my son's damage/autism is from the MMR,

he stopped speaking the day he had it (6 days after his 1st birthday).

He never said another word for over two years as a result of months of

ABA. I only started DAN input last week after spending a year worrying

about giving my son anyother things....terrified of it happening again.

I do not know anything at all about protocol how it works etc,.

Can someone point me in the right direction please to help me learn

about this to me new and possibly best therapy my son needs.

I would love to here other parents stories how methods/therapy has

helped their own children to get better.

x

[Guest guest]

Hi all, thanks for making me feel welcome! Sorry this is long but got

a gut feeling this is the site I have been looking for to help my

baby.

Thanks Kirsty I will look back on that thread. I look forward to

reading this. I am thirsty for treatments that work! Like you all on

here!

Robyn thank you for sharing that information on your boys. I am very

interested in what you said about Noah vomiting with this CVS... I

have never heard of it. Do you know any links to this as ph

diagnosed severly autistic vomits mainly with food he doesnt want ?

cant eat or when he is distressed (without food). He has improved a

lot but in early days (only after MMR) he would vomit if he got upset

for least thing i.e had to wait before going out as I forgot

something or I could not give him something their and then i.e sweets

in shop as had to wait to pay for them or any distress really) he has

got better with language though. But is on a feeding progranne in ABA

and vomits a lot. I don't know what it is but speech and lang say it

is texture sensory, ABA Consultant say it behaviour and Paed says it

is just his Autism. I have a gut feeling it is something else....but

don't know what? So very interested in your son has vomiting problem

as don't know anyone else.

I live in UK so it's gone 3amhere! Reading 's book now Louder

than Words. Her boy went to UCLA as well! I am with a company that is

connected with UCLA model UKYAP. The consultant is excellent. I was

his tutor for 10 months before taking the education authority to

court and thankfully won ABA. It has been running now for 14 weeks

with tutors, I am classed as lead tutor as they would not fund that,

but got 30 hours (as 10 hours paper work) over 50 weeks a year. It

has nearly killed me the stress and I am burnt out they are ? CFS for

me now. This was only last week at the same clinic as DAN but

different dr and he said their was a link between CFS and Autism, so

I am getting this test done to see if their is a link...Sunderland

University does the test and I think doing research or did research

on it,,,anyone heard of Shattock? He is famous over here esp for

gluten/caesin study on Autism.

Sorry Angie ph stopped speaking the day he had MMR and it was

over two years later about 3 months into ABA he started to make

sounds, that was last September. He know says hundreds of words and

between 5-8 word ssentences.

I have employed an ABA tutor from America and she workrd for 5 years

in Colorado as tutor. She says Jo is the most motivated child she has

seen on ABA. Oh he is 3yrs old ( four next month). He is flying on

ABA but still stimms a lot.

Only found this site by accident and only started DAN with Dr last

week.....never came accross once in researching.....I can only

be right in guessing nothing in UK for ?!?!? Though the DAN Dr

did Neuro Immunology Autism Panel A test....is this on the right

lines to what the protocol do in part of testing. The DAN Dr is a

medic at first and goes by research based rather than just one

process so I guess she is open to finding the best for my son and not

just sticking to DAN.

" <krnardini@...> wrote:

>

> Hi ,

>

>

>

> Welcome! This list very recently had this same thread. If you

search the

> archives back 10-14 days you should be able to find tons of info and

> stories.

>

>

>

> Kristy

>

>

>

> From: [mailto: ] On Behalf

Of Robyn

> & Greg Coggins

> Sent: Sunday, June 29, 2008 1:05 PM

>

> Subject: Re: Newbie

>

>

>

> Hi, .

>

> I have two sons, one with Asperger's and one with mild/moderate

autism.

> We've been with Dr. G since the end of January. So far, both boys

have made

> great improvement on the protocol. Both boys have a seizure

disorder and

> food allergies. In addition, my middle son Noah who is most severely

> affected by autism, has a neurological condition called cyclical

vomiting

> syndrome (throws up one week out of the month) and severe migraines

> associated with the CVS. He was diagnosed last September at UCLA

and we were

> told he would probably always have the CVS and the migraines. About

two

> months into the protocol, the CVS stopped completely (he had been

vomiting

> as often as every two weeks for the past two years), and he's only

had two

> migraines since February. Our sons' health and quality of life have

vastly

> improved and we feel so blessed.

>

> Noah has made tremendous strides in socialization and in language

since

> starting the protocol. We went the supplement route when he was

younger, but

> he was a non responder. I didn't realize how much of a non

responder until

> we took him off all of the supplements and no difference in

behavior,

> language, etc.

>

> I can't emphasize enough how grateful we are to have found and

Dr. G.

>

> Good luck,

>

> Robyn

>

> mum04 <mum04@... <mailto:mum04%40> > wrote:

> Hi all,

>

> I discovered this site by accident after my ds had a blood test

> requested by DAN Dr for Neuroimunology Autism Panel A. Wanted to

learn

> more about this test and I ended up eventually after many hours

here,

> which I am delighted as I know my son's damage/autism is from the

MMR,

> he stopped speaking the day he had it (6 days after his 1st

birthday).

> He never said another word for over two years as a result of months

of

> ABA. I only started DAN input last week after spending a year

worrying

> about giving my son anyother things....terrified of it happening

again.

>

> I do not know anything at all about protocol how it works

etc,.

> Can someone point me in the right direction please to help me learn

> about this to me new and possibly best therapy my son needs.

>

> I would love to here other parents stories how methods/therapy

has

> helped their own children to get better.

>

> x

>

>

[Guest guest]

Hi Angie,

I will follow those links thank you....it did sound like I was on

another site as I had nothing to say about as know nothing about

it.....yet! It took me a year to start DAN dr as so nervous, will

give it 6 months and will start to look into this also....I am not a

sheep i,.e ABA has not been won in my education authority since 2001

their is only one other child in my area that education were taken to

court (its a capital city) and won. I refused to have him put in a

unit and insisted mainstream he goes 4 hours a week. Is anyone from

UK on here? I am from Wales.

>

> From: mum04 <mum04@...>

> Subject: Newbie

>

> Date: Sunday, June 29, 2008, 4:59 AM

>

>

>

>

>

>

> Hi all,

>

> I discovered this site by accident after my ds had a blood test

> requested by DAN Dr for Neuroimunology Autism Panel A. Wanted to

learn

> more about this test and I ended up eventually after many hours

here,

> which I am delighted as I know my son's damage/autism is from the

MMR,

> he stopped speaking the day he had it (6 days after his 1st

birthday).

> He never said another word for over two years as a result of months

of

> ABA. I only started DAN input last week after spending a year

worrying

> about giving my son anyother things....terrified of it happening

again.

>

> I do not know anything at all about protocol how it works

etc,.

> Can someone point me in the right direction please to help me learn

> about this to me new and possibly best therapy my son needs.

>

> I would love to here other parents stories how methods/therapy

has

> helped their own children to get better.

>

> x

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hey Robin -

Welcome to the group! It was great to meet you and I hope this forum is helpful

for you. My next appt. when we may meet again is Sept. 19. Let me know if you

get that Friday on your schedule too! Feel free to keep in touch.

[Guest guest]

HI ROBIN,WELCOME TO THIS RA GROUP! IT'S AWESOME! hope u will get any info. that

u might need 2 help in whatever your issues r. god bless, melyndagamez 7/1/08

11:35p.m.central

[ ] Re: Newbie

Hey Robin -

Welcome to the group! It was great to meet you and I hope this forum is helpful

for you. My next appt. when we may meet again is Sept. 19.. Let me know if you

get that Friday on your schedule too! Feel free to keep in touch.

     

[Guest guest]

Thankyou for welcoming me you are a friendly helpfull site.

Angie, sorry my boy spoke 2 years later when he started ABA, was

silent from MMR until 3 months into ABA. I will look at those sites

too!

Kirsty, found those threads thank you and some in file section also.

Robyn I am very interested and curious about CVS. Never heard of it

before and my boy vomited all the time from the time e could not

speak. But I guess it was a form of communication for him. I will

look up what CVS is though, thank you for drawing my attention to

this!

Sorry late applying but I did reply that night and internet must have

lost message. I look forward to looking at protocol and see if

it can help my boy.

Are their any Drs in the UK?

x

>

> From: mum04 <mum04@...>

> Subject: Newbie

>

> Date: Sunday, June 29, 2008, 4:59 AM

>

>

>

>

>

>

> Hi all,

>

> I discovered this site by accident after my ds had a blood test

> requested by DAN Dr for Neuroimunology Autism Panel A. Wanted to

learn

> more about this test and I ended up eventually after many hours

here,

> which I am delighted as I know my son's damage/autism is from the

MMR,

> he stopped speaking the day he had it (6 days after his 1st

birthday).

> He never said another word for over two years as a result of months

of

> ABA. I only started DAN input last week after spending a year

worrying

> about giving my son anyother things....terrified of it happening

again.

>

> I do not know anything at all about protocol how it works

etc,.

> Can someone point me in the right direction please to help me learn

> about this to me new and possibly best therapy my son needs.

>

> I would love to here other parents stories how methods/therapy

has

> helped their own children to get better.

>

> x

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

> Hi , now there is nothing like that in the UK unfortunately.

>

> not many DANs either, basically a handful of doctors and nutritionist who know

> anything about autism at all.

>

> it is a desert here!

>

>

> natasa x

>

>

> Thankyou for welcoming me you are a friendly helpfull site.

>

> Angie, sorry my boy spoke 2 years later when he started ABA, was

> silent from MMR until 3 months into ABA. I will look at those sites

> too!

>

> Kirsty, found those threads thank you and some in file section also.

>

> Robyn I am very interested and curious about CVS. Never heard of it

> before and my boy vomited all the time from the time e could not

> speak. But I guess it was a form of communication for him. I will

> look up what CVS is though, thank you for drawing my attention to

> this!

>

> Sorry late applying but I did reply that night and internet must have

> lost message. I look forward to looking at protocol and see if

> it can help my boy.

>

> Are their any Drs in the UK?

>

> x

>

>

>> >

>> > From: mum04 <mum04@...>

>> > Subject: Newbie

>> > <mailto:%40>

>> > Date: Sunday, June 29, 2008, 4:59 AM

>> >

>> >

>> >

>> >

>> >

>> >

>> > Hi all,

>> >

>> > I discovered this site by accident after my ds had a blood test

>> > requested by DAN Dr for Neuroimunology Autism Panel A. Wanted to

> learn

>> > more about this test and I ended up eventually after many hours

> here,

>> > which I am delighted as I know my son's damage/autism is from the

> MMR,

>> > he stopped speaking the day he had it (6 days after his 1st

> birthday).

>> > He never said another word for over two years as a result of months

> of

>> > ABA. I only started DAN input last week after spending a year

> worrying

>> > about giving my son anyother things....terrified of it happening

> again.

>> >

>> > I do not know anything at all about protocol how it works

> etc,.

>> > Can someone point me in the right direction please to help me learn

>> > about this to me new and possibly best therapy my son needs.

>> >

>> > I would love to here other parents stories how methods/therapy

> has

>> > helped their own children to get better.

>> >

>> > x

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

[Guest guest]

Hi, .

You can google Cyclical Vomiting Syndrome and find a few sites that are very

informative. CVS is very regular vomiting, although stress and other illnesses

can throw a child into a cycle early. Some kids cycle on a monthly basis, some

every two weeks, and some only twice a year. It usually occurs on a pretty

regular basis. Has your child ever had an endoscopy? Noah wasn't diagnosed

(UCLA) until he had a colonoscopy and endoscopy to rule out other issues.

I hope you find the information you need to help your son. It's so hard for

them to achieve when they're sick all the time.

All the best,

Robyn

mum04 <mum04@...> wrote:

Hi all, thanks for making me feel welcome! Sorry this is long but got

a gut feeling this is the site I have been looking for to help my

baby.

Thanks Kirsty I will look back on that thread. I look forward to

reading this. I am thirsty for treatments that work! Like you all on

here!

Robyn thank you for sharing that information on your boys. I am very

interested in what you said about Noah vomiting with this CVS... I

have never heard of it. Do you know any links to this as ph

diagnosed severly autistic vomits mainly with food he doesnt want ?

cant eat or when he is distressed (without food). He has improved a

lot but in early days (only after MMR) he would vomit if he got upset

for least thing i.e had to wait before going out as I forgot

something or I could not give him something their and then i.e sweets

in shop as had to wait to pay for them or any distress really) he has

got better with language though. But is on a feeding progranne in ABA

and vomits a lot. I don't know what it is but speech and lang say it

is texture sensory, ABA Consultant say it behaviour and Paed says it

is just his Autism. I have a gut feeling it is something else....but

don't know what? So very interested in your son has vomiting problem

as don't know anyone else.

I live in UK so it's gone 3amhere! Reading 's book now Louder

than Words. Her boy went to UCLA as well! I am with a company that is

connected with UCLA model UKYAP. The consultant is excellent. I was

his tutor for 10 months before taking the education authority to

court and thankfully won ABA. It has been running now for 14 weeks

with tutors, I am classed as lead tutor as they would not fund that,

but got 30 hours (as 10 hours paper work) over 50 weeks a year. It

has nearly killed me the stress and I am burnt out they are ? CFS for

me now. This was only last week at the same clinic as DAN but

different dr and he said their was a link between CFS and Autism, so

I am getting this test done to see if their is a link...Sunderland

University does the test and I think doing research or did research

on it,,,anyone heard of Shattock? He is famous over here esp for

gluten/caesin study on Autism.

Sorry Angie ph stopped speaking the day he had MMR and it was

over two years later about 3 months into ABA he started to make

sounds, that was last September. He know says hundreds of words and

between 5-8 word ssentences.

I have employed an ABA tutor from America and she workrd for 5 years

in Colorado as tutor. She says Jo is the most motivated child she has

seen on ABA. Oh he is 3yrs old ( four next month). He is flying on

ABA but still stimms a lot.

Only found this site by accident and only started DAN with Dr last

week.....never came accross once in researching.....I can only

be right in guessing nothing in UK for ?!?!? Though the DAN Dr

did Neuro Immunology Autism Panel A test....is this on the right

lines to what the protocol do in part of testing. The DAN Dr is a

medic at first and goes by research based rather than just one

process so I guess she is open to finding the best for my son and not

just sticking to DAN.

" <krnardini@...> wrote:

>

> Hi ,

>

>

>

> Welcome! This list very recently had this same thread. If you

search the

> archives back 10-14 days you should be able to find tons of info and

> stories.

>

>

>

> Kristy

>

>

>

> From: [mailto: ] On Behalf

Of Robyn

> & Greg Coggins

> Sent: Sunday, June 29, 2008 1:05 PM

>

> Subject: Re: Newbie

>

>

>

> Hi, .

>

> I have two sons, one with Asperger's and one with mild/moderate

autism.

> We've been with Dr. G since the end of January. So far, both boys

have made

> great improvement on the protocol. Both boys have a seizure

disorder and

> food allergies. In addition, my middle son Noah who is most severely

> affected by autism, has a neurological condition called cyclical

vomiting

> syndrome (throws up one week out of the month) and severe migraines

> associated with the CVS. He was diagnosed last September at UCLA

and we were

> told he would probably always have the CVS and the migraines. About

two

> months into the protocol, the CVS stopped completely (he had been

vomiting

> as often as every two weeks for the past two years), and he's only

had two

> migraines since February. Our sons' health and quality of life have

vastly

> improved and we feel so blessed.

>

> Noah has made tremendous strides in socialization and in language

since

> starting the protocol. We went the supplement route when he was

younger, but

> he was a non responder. I didn't realize how much of a non

responder until

> we took him off all of the supplements and no difference in

behavior,

> language, etc.

>

> I can't emphasize enough how grateful we are to have found and

Dr. G.

>

> Good luck,

>

> Robyn

>

> mum04 <mum04@... <mailto:mum04%40> > wrote:

> Hi all,

>

> I discovered this site by accident after my ds had a blood test

> requested by DAN Dr for Neuroimunology Autism Panel A. Wanted to

learn

> more about this test and I ended up eventually after many hours

here,

> which I am delighted as I know my son's damage/autism is from the

MMR,

> he stopped speaking the day he had it (6 days after his 1st

birthday).

> He never said another word for over two years as a result of months

of

> ABA. I only started DAN input last week after spending a year

worrying

> about giving my son anyother things....terrified of it happening

again.

>

> I do not know anything at all about protocol how it works

etc,.

> Can someone point me in the right direction please to help me learn

> about this to me new and possibly best therapy my son needs.

>

> I would love to here other parents stories how methods/therapy

has

> helped their own children to get better.

>

> x

>

>

[Guest guest]

Welcome MH . . .

I've never met you . . . but I'm positive you are experiencing health problems as a result of your implants if many of your symptoms match those on our lists.

The next step? . . . Figuring out who/how/where you can get your implants properly removed. . . Keep in mind proper! . . . We have only a handful of doctors we can recommend without question. Undoubtedly other doctorsc can do a proper job . . . but whether they are willing to do so, or can be trusted to do so is what you have to determine.

Generally speaking, plastic surgeons deny there is a problem. If you insist on having your implants removed, they will try to enourage you to have them replaced, telling you that you will not be happy with the results otherwise. . . Then they will tell you that the capsules that have grown around your implants will be absorbed, so they don't have to be removed. . . . ALL of this is WRONG! If your doctor says this, consider it testimony to his/her own skills and run!

You are looking for a surgeon who removed implants "en bloc" . . . That is they remove the capsule with the implant still inside to avoid spilling contaminated fluids into your chest cavity. They will use drains following explant until there is no significant drainage.

You may get lucky and find your insurance will pay part of the costs . . . Some insurance companies pay willingly and others with pressure . . . many will not pay at all. Read your policy carefully. . . . If they know anything about implants, they should know it will save them money to pay for your explant, without replacement, rather than pay the expenses you will have if you remain ill.

Even then, it will likely take sometime before you're feeling completely yourself. .. That's where following an excellent diet comes in. Most women have a systemic fungal problem. . . Until that's addresses, you really won't know what's going on at the core.

We have lots of recommendations for diet and detox - but your head is probably swimming already. . . .

Stay around and ask as many questions as you like! . . . We've got a bunch of lovely ladies here who want to help you get better.

Hugs and prayers,

Rogene

[Guest guest]

Hello MH,

my symptoms are very cyclic also, sometimes i feel like yes,so swelling and then i have two weeks of pain,swelling,redness. this group of women will really help you. i was hesitant initially also because i thought what if i get the implants out and my symptoms are still the same, then i have gone through more anesthesia, more stress on my body and not to mention the out of pocket expense for the surgery. Now i will definitely keep this surgery date (sept 5), i have tried many medicine regimens and nothing is helping. i am tired of feeling like this and lots of my symptoms are just like the women on this website.good luck with everything!! hang in there!

Carey

In a message dated 7/12/2008 7:38:12 A.M. Central Daylight Time, gmhaines@... writes:

thank you for your replies. i do have a lot of thoughts and questions on all of this. for one, have you know anyone who has had no relief of symptoms after explant? that is a major decision, and i know for many reasons the right one. BUT i worry about the aftermath of it all on how i will look and feel IF the implants have nothing to do with this. how do you recover from the surgery and any affects from the anesthesia? anyone ever had and GI issues? i am on Nexium for what they think is silent reflux causing a terrible sore throat for 6 mos. could this all be related to my health from the implants? my symptoms also come and go - is that normal for many of you? i will have a good couple of weeks thinking i am on the road to recovery, and then have a set back for several days. thank you again.>> Hello MH ~ > > Your symptoms are ditto of most of us.> Even the pots ! You are probably having> some adrenal fatigue from all your symptoms.> Your body is fighting so hard against the implants> it doesnt have much fight for your body and it is> going nuts, and it is stressed from it all. > I am so glad you found the group here. You will> learn lots here. Alot of the gals are not around > due to it being the summer, and several of our > gals have cancer right now, or other things keeping> them away as much as usual.> For many stories that sound much like yours, check out > these two blogs:> > http://freakonomics.blogs.nytimes.com/2008/06/18/your-plastic-surgery-questions-answered/#comment-626458> and> > > http://www.realself.com/forum/silicone-mentor-breast-implants-safe.html#comment-18559 Silicone mentor breast implants safe? > > and then look on this site, and go to the womens stories, you will see lots > that sound like yours ! Some of those girls participate in the group here. I > am one of them, mine is Dede : http://www.humanticsfoundation.com/dede.htm > > The main thing, you need to get explanted, and proper> explant is a must. Enbloc with drains. That means > cutting around the scar capsule and removing it with > the implant inside it. That way any debris or infection> inside there wont be dumped inside your body. We> have a list of doctors we recommend in the archives> along with lots of info, please read all you can in there> and feel free to ask all the questions you have.> With proper explant and detoxing and nutrician, you> can heal and get well, it does take time and dilligence> but you can heal ! ! > Welcome to the group ! > Hugs and Prayers> Dede> > > **************> Get the scoop on last night's hottest shows and the live > music scene in your area - Check out TourTracker.com!> > (http://www.tourtracker.com?NCID=aolmus00050000000112)> Get the scoop on last night's hottest shows and the live music scene in your area - Check out TourTracker.com!