New Member

Report post · August 18, 2005

Penny <smadaynnep@...> wrote:

Hi,

I am a new member - I just found this group by seeing the address on Jackie's

post about sensory products - Thanks Jackie :-)

I have an almost 9 year old son with ADHD and SPD - I also have a 6 year old

daughter who we are not 100% sure what her dx is. This past year her teacher

was convinced that she had oppositional defant disorder, I was leaning towards

Central Auditoy Processing Disorder with a parsody sub-type. BUT the child

therapist that I took her to felt that my daughter probably has Aspergers.

After reading Tony Atwood's book and the Oasis book I feel that my daughter

probably does have Aspergers and thus am on a quest to learn as much as I can.

I have discovered from being my son's Mom that I have learned more from other

Moms and their discussions on then I have learned from the medical

" experts " and or from other sources - so I am hoping that from this group I will

learn more about how best to help my daughter.

Penny

Welcome Penny!

Roxanna

Always Remember You're Unique

Just Like Everyone Else

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

Start your day with - make it your home page

Report post · August 18, 2005

Hi Bonnie,I'm glad you came to vent. So many of us

need this group to do just that sometimes!. You are so

young, it amazes me how many people are not very old

that have RA. I also thought at one time it was a

disease for " old " people , like granma and grandpa.

I've learned a lot, and know how frustrating the

diagnoses and the adjustments we must make in our

daily lives are. I also hate taking pills, sometimes I

wonder if they do what they are supposed to , and if

one may be affecting another. Hang in there, and feel

free to vent anytime in Missouri

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

Report post · August 18, 2005

a,

I have had a Gazelle now for over a year and live it. They sell them at

sears, Walmart and many sporting goods stores. I would check out sears to see

if they have a demo model on the sales floor that your could try. I went to

my local gym and they have the professional model which I tried before I

bought one for myself.

I got mine from HSN.com. Though check them out carefully cause they are not

all the same. The walmart version is stripped down and can only handle a

person of 250 lbs or less. The gazzelle super crosstrainer and many of the

other models can handle up to 300 lbs and have all the electronic monitoring,

cup holders and all the new workout DVDs.

Its so hot here in Texas that the Gazelle is the only way I get exercise. LOL

Toni

In a message dated 8/18/05 4:15:20 A.M. Central Daylight Time,

writes:

Date: Wed, 17 Aug 2005 23:00:17 -0400

From: a <a54@...>

Subject: Re: New Member

Welcome Bonnie,

Sorry for your diagnosis, but glad you found us. I know it's difficult

taking so many meds. We all hate it.

Were you on folic acid with the methotrexate? Is the Humira helping?

I take Enbrel & Mtx and naproxen. That gazelle looks very interesting.

I've thought about trying it.

My exercise is done in a pool, but I'm sure I could do the gazelle.

Nice to meet you.

a

Report post · August 19, 2005

Hi a - I did take folic acid and I still had a lot of problems.

I'm at 90 pills per week and Humira weekly - and it's not really

helping - Nice to meet you too! And thanks for listening.

Regards, Bonnie

>

> > Hi all - my name is Bonnie, from CT - and I was diagnosed one

year ago

> > with RA (my RF factor was 269) - and I'm now 37 years old.

> >

> > It's been a rough year - was on 1000mg of Naproxen for 9

months -

> > which caused bad gastritis and acid reflux, tried Methotrexate -

but

> > got huge mouth ulcers.

> >

> > Now I'm on Humira (now weekly), plus plaquinel (it didn't work

alone),

> > plus they are starting me on sulfasalazine plus 5 mg of

predinsone, 50

> > mg zoloft and for the stomach I have to take 2 prevacid, 1

zantac 150

> > and 4 carafate....I " M a walking drug store and I hate it!

> >

> > I gained 20 or so pounds this year - and I do work out for 15

mins 5

> > days/week on the Tony Little's gazelle machine -

> >

> > I just needed to vent - it's so hard - thanks for listening!

> >

> > Bonnie

> >

Report post · August 20, 2005

Hi Bonnie,

Welcome to the group. You will learn a lot from

everyone. I hope you are feeling better. Vent anytime

you need to. We all do.

Beth(AR)

--- bhudick <bhudick@...> wrote:

> Hi all - my name is Bonnie, from CT - and I was

> diagnosed one year ago

> with RA (my RF factor was 269) - and I'm now 37

> years old.

>

> It's been a rough year - was on 1000mg of Naproxen

> for 9 months -

> which caused bad gastritis and acid reflux, tried

> Methotrexate - but

> got huge mouth ulcers.

>

> Now I'm on Humira (now weekly), plus plaquinel (it

> didn't work alone),

> plus they are starting me on sulfasalazine plus 5 mg

> of predinsone, 50

> mg zoloft and for the stomach I have to take 2

> prevacid, 1 zantac 150

> and 4 carafate....I " M a walking drug store and I

> hate it!

>

> I gained 20 or so pounds this year - and I do work

> out for 15 mins 5

> days/week on the Tony Little's gazelle machine -

>

> I just needed to vent - it's so hard - thanks for

> listening!

>

> Bonnie

>

__________________________________________________

Report post · August 21, 2005

Welcome, Bonnie!

Sorry that you have to take so many medications, but maybe some of them can

be eliminated in the future.

It's great that you are exercising.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] New Member

Hi all - my name is Bonnie, from CT - and I was diagnosed one year ago

with RA (my RF factor was 269) - and I'm now 37 years old.

It's been a rough year - was on 1000mg of Naproxen for 9 months -

which caused bad gastritis and acid reflux, tried Methotrexate - but

got huge mouth ulcers.

Now I'm on Humira (now weekly), plus plaquinel (it didn't work alone),

plus they are starting me on sulfasalazine plus 5 mg of predinsone, 50

mg zoloft and for the stomach I have to take 2 prevacid, 1 zantac 150

and 4 carafate....I " M a walking drug store and I hate it!

I gained 20 or so pounds this year - and I do work out for 15 mins 5

days/week on the Tony Little's gazelle machine -

I just needed to vent - it's so hard - thanks for listening!

Bonnie

Report post · August 30, 2005

Hi, Jocelyne!

I've heard that methotrexate does " something " to the

teeth, but I'm not sure what. In fact, my

ear/nose/throat doc said that my teeth " are in

amazingly good shape " for someone on methotrexate. I'm

not really sure what he means....

-

--- Jocelyne <smartjo@...> wrote:

> because I keep losing

> my new fillings and was wondering if the meds had

> anything to do with

> it.

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

Stein

http://www.noblefusion.com/astein

http://www.livejournal.com/users/astein142/

http://darkart42.deviantart.com/

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

" Do or do not. There is no try. " - Yoda

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

" If you're tired of fighting battles with yourself

If you want to be somebody else, change your mind... "

-- Sister Hazel

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

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

Report post · September 6, 2005

> Hi, just joined this group. Have been using TD-DMPS every 48 hour

> protocol a-la Buttar for 8 months. Observed no significant

improvement.

>

> Have switched to 3 days on, 4 days off based on Andy Cutler's

> suggestion. Have completed two cycles of that so far. Again, not

much

> is going on.

>

> Thinking of adding ALA to the TD-DMPS, since it's the only one,

> according to Andy Cutler, that crosses the BBB.

>

> Can someone please tell me which ALA in what form, and from where?

The common ALA that is for sale at most HFS in my area, and at

most or all supplement retailers. Very available. Kirkman's

sells it in smaller amounts (like 25 mg??). More info here:

http://home.earthlink.net/~moriam/HOW_TO_buy_DMSA.html

(see ALA section).

Most people use it orally, and Andy's recommended dosages are

ALL ORAL:

http://home.earthlink.net/~moriam/Andy_dose_sched.html

Please note it needs to be given every THREE hours, INCLUDING

AT NIGHT. Some use 4 hours apart at night, considered

" acceptable " , but 3 is the real guideline, and 4 is

" stretching it " but passable.

> Is

> anyone else in my position, which a child as young as 3 1/2, have

been

> using TD-DMPS for 8 months, and have benefited very little form

it, if

> at all? I'm very puzzled and in despair, because his stool tests

show

> good pull of everything, including gradual excretion of mercury,

but I

> see no behavioral/clinical changes.

wishing you well,

Moria

Report post · September 6, 2005

ALA is available at most health food stores and at stores like Trader Joe's.

Did you do a hair test for your child? Did he meet the counting rules? Did he

have high levels of other metals? Which ones?

S S

<tt>

Hi, just joined this group. Have been using TD-DMPS every 48 hour

protocol a-la Buttar for 8 months. Observed no significant improvement.

Have switched to 3 days on, 4 days off based on Andy Cutler's

suggestion. Have completed two cycles of that so far. Again, not much

is going on.

Thinking of adding ALA to the TD-DMPS, since it's the only one,

according to Andy Cutler, that crosses the BBB.

Can someone please tell me which ALA in what form, and from where? Is

anyone else in my position, which a child as young as 3 1/2, have been

using TD-DMPS for 8 months, and have benefited very little form it, if

at all? I'm very puzzled and in despair, because his stool tests show

good pull of everything, including gradual excretion of mercury, but I

see no behavioral/clinical changes.

Thanks a bunch everyone.

Beti

</tt>

<tt>

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

Report post · September 11, 2005

> Can someone please tell me which ALA in what form, and from where?

I used Natural Factors brand ALA, from my local health food store.

>>I'm very puzzled and in despair, because his stool tests show

> good pull of everything, including gradual excretion of mercury, but I

> see no behavioral/clinical changes.

See my previous message. I did not do testing, so I don't know

exactly what metal/s were excreted, but most of my son's improvements

came from supplementation, not from chelation.

Dana

Report post · September 22, 2005

Wellcome ! You came to the right place.Everyone here knows what

it is like to be in pain and to be frustrated.This is the place to

vent,ask questions, whine(I've been good at that one. lol)or anything

to need with very loving and caring people going through the pain and

suffering of RA.I am new to this too so just hang on tight and we will

learn together.I don't like prednisone either.I 'm not on it right now

but probably not for long.I have the most problems with my knees and

elbows.Best of luck and hope you enjoy being here as much as I have.-

Tammy-

> Hi. My name is and I have recently been diagnosed with RA.

> Those who already have this disease know that people come out of the

> woodwork with advice- very well intentioned advice. I just want to

> talk about this sometimes with those who know what I'm dealing with.

> There is so much to read and learn about. I am overloaded with

> information. Currently I am following my Dr.'s orders and the meds

> help; they have so many side effects though, but what can you do?

The

> flare-ups are worse! My eye is involved also - Scleritis. The eye is

> giving me the most trouble right now. Don't want to take Prednisone

> too long. Anyway, I guess I post this and then???

>

> Thanks,

>

> Bree

Report post · September 22, 2005

Welcome . Do you prefer to be called Bree? I know all about

well intended advise. Most people are clueless and we

just have to appreciate that they care enough to try to help.

I have 2 family members that have eye problems, both with scleritis-

my mom has scleritis as well as eye fluids that leak behind her

eye for some unknown reason. My BIL was prescribed very high doses of

prednisone, which resulted in necrosis of his hip bones.

My mom reacted to prednisone thank the good Lord, so she didn't take

it. Instead they injected steroids in her eye. I know it sounds

awful, but she said she didn't even feel it. My BIL also had the

injections, which allowed him to get off the prednisone (to bad he

didn't go this route first and save his hips as well as saved himself

from about 60 extra pounds of weight). Both went to ophthalmologists.

Do you see an ophthalmologist?

a

On Sep 22, 2005, at 2:28 PM, bree4444 wrote:

> Hi. My name is and I have recently been diagnosed with RA.

> Those who already have this disease know that people come out of the

> woodwork with advice- very well intentioned advice. I just want to

> talk about this sometimes with those who know what I'm dealing with.

> There is so much to read and learn about. I am overloaded with

> information. Currently I am following my Dr.'s orders and the meds

> help; they have so many side effects though, but what can you do? The

> flare-ups are worse! My eye is involved also - Scleritis. The eye is

> giving me the most trouble right now. Don't want to take Prednisone

> too long. Anyway, I guess I post this and then???

>

> Thanks,

>

> Bree

>

Report post · September 22, 2005

> Hi all, I have Asperger's. Thanks,

>

Report post · September 23, 2005

Hi Sharon, Sure, I am 26 years old..have Asperger's since 2000. Thanks,

( ) Re: New Member

> Hi all, I have Asperger's. Thanks,

>

Report post · September 23, 2005

Tammy,

Thanks for your email. I am so surprised by all the emails I received. Now I

don't know what to do with all of them! Do you have mail come to your inbox or

get messages online?

It's funny the meds haved helped my joints a lot. People say, " Now that things

are better, you could try natural methods to control the disease. " I don't

think I can deal with those hot joints again on methods that have worked. I

take 20mg of Methotrexate each Friday, Naprosen 500mg two times a day, and

currently 5mg of Predisone each day. That's fairly new though. My eye

(scleritis) wasn't getting better like my feet, knees and hand. I am a bit

concerned about all the side effects, but the disease sure has some bad side

effects too. I guess it's pick your poison.

What's your regimen? If you don't mind talking about it.

I really cannot answer all the emails. So I may change the setting to view on

the web. But my best email address is bree444@... if you would like to

chat.

Thanks!

clarabell4ever2000 <clarabell4ever2000@...> wrote: