Hello Everyone

February 27, 2006

, why does the Dr. want you to stop methodone?

Bonnie

[ ] Re: hello everyone

>Dear Cam,Thank you so much for your thoughts and kindness. I was told five years ago that I would need this surgery and it has been downhill since.I truly believe that I tried too hard to always be positive, I was taking care of my ailing parents, had a ten year relationship, and worked a great job. Today all that is gone. Mom and dad are worried about me now..etc.I guess I should have cried back then and not been so...accepting of it all. I truly was the picture of positivity and now I am feeling it all. But I am better today than the day I vented. I guess I only want to wake up and begin the long road to healing. I know it isnt over, far from it, but the whole nightmare will be on its way out, and I will be stronger for it and will have more to offer others, as you are with me.Cam, Dr Rand stated that I need to try to get off of Methadone- period. He asked me to get off of morphine, I did that and now I have to cut back on the only thing that gets me out of bed- so I am upset.As I said to Sharon, I wish I could write more, but I cant right now, please dont think that I am not reading posts and want to comment, feel for others, and wish you all the best. And most of all appreciate you all for being here for me during such a trying time.I would love to go to the Boston dinner shindig if that is ok. Sharon are you going? If so karen could pick you up and bring both of us...Take care!> Dear ,> > You can vent here, express your fears...whatever....this is a big > thing in your life and whatever you decide to do will have a big > impact on how the rest of your life plays out. It is why the board > sprang to life...to have a place to go through this "event" with > others who understand our fears, concerns and joys. Yes joys. I > remember after surgery writing that I couldn't even get my friggin' > underpants on....and it was this group that bolstered me up and got > me seeing that the future held the possibility that I could dress > myself and care for my family...and why, here I am just a little > while later wondering if I could sneak in a little downhill skiing > while we are on vacation next week with my family.....alls to > say...as bad as you feel now....and as terrible as you are going to > feel after surgery, you will survive it, and then be able to get > back to your life.> > I am not a doctor, nor do I have any medical training, so I have no > idea why Dr Rand wants you off methadone, or how soon before surgery > that would be....but if he was not suggesting how to accomplish that > by transitioning to something else maybe you should call back for a > clarification? I can't believe he wants you to go cold turkey with > no replacement.> > I had surgery a year ago with Dr Rand. It is no cake walk...it will > not be easy...but I believe the better shape you are in on > the "front side" the better chances you have for a good recovery. So > being proactive and quitting smoking (Yeah !!!) and maybe even > changing to a different med protocol are all things that work in > your favor for a better tomorrow.> > By the way, anyone that is telling you it is "almost over" needs to > be told that the recovery is long...so it is not "almost over". The > only thing that is closer, is your surgery date...so I guess in that > way, you are almost done waiting. But we will be here helping you > along .> > My personal belief is that a good mental outlook helps get through > the long days right after surgery when you will not feel like doing > much of anything, but you will have to fight to move and gain > strength if you want to recover. The way I always looked at it, I > felt I picked a great surgeon and hospital. I arranged my personal > life as best I could. I expected all those people, surgeon, nurses, > husband, child, to be in top form to meet my needs...but I also had > a responsibility to be in top form too. For me that included good > mental attitude, good physical condition and creating enough space > in my life to heal.> > As an aside, earlier this week NPR had a doctor on speaking of the > liklihood that quitting smoking would trigger depressive episodes > with those who are predisposed to depression. He clearly felt both > conditions should be treated together and urged people seeking > treatment to find doctors and therapists who recognized the newest > information on these two conditions required a treatment for > both...smoking cessation and depression. I know you ar somewhat past > the early stages of quitting the "green monster" but it may be that > if you really are feeling this blue that more is going on than you > think. Please don't misunderstand....I think it stinks to be > us...this looms large in our lives and requires a complete change of > plans for out lives....but still...> > Perhaps I read your post wrong and maybe you are really just saying > how frightening this all is. I know that once I accepted that I was > headed to surgery my feelings became very complicated. Most of my > friends didn't really see what the big deal was...I mean after all, > in this day and age, surgery is for everyone, stars, athletes, ER on > t.v....it always comes out alright....right? Well I could think of > hundreds of scenarios that were not like that....but in the end...I > still wanted to stop the agony and get on with my life. Dr Rand > assured me that the pain I was experiencing would be gone after the > first surgery and it was...and after the second days surgery things > have only gotten better.> > I am pain free, off narcotics and doing most everything I want...so > it is not an impossible thing...but you will have to want it....and > you will have to want it bad. After all, remember that it is > elective surgery. Should you choose to have it done, the chances > are,if you follow your orders and prepare like your life depends on > it, you will come through it just fine.> > Take Care, Cam>

February 27, 2006

> >Dear Cam,

>

> Thank you so much for your thoughts and kindness. I was told

five

> years ago that I would need this surgery and it has been

downhill

> since.

>

> I truly believe that I tried too hard to always be positive, I

was

> taking care of my ailing parents, had a ten year relationship,

and

> worked a great job. Today all that is gone. Mom and dad are

> worried about me now..etc.

>

> I guess I should have cried back then and not been

so...accepting of

> it all. I truly was the picture of positivity and now I am

feeling

> it all. But I am better today than the day I vented. I guess I

> only want to wake up and begin the long road to healing. I

know it

> isnt over, far from it, but the whole nightmare will be on its

way

> out, and I will be stronger for it and will have more to offer

> others, as you are with me.

>

> Cam, Dr Rand stated that I need to try to get off of Methadone-

> period. He asked me to get off of morphine, I did that and now I

> have to cut back on the only thing that gets me out of bed- so I

am

> upset.

>

> As I said to Sharon, I wish I could write more, but I cant right

> now, please dont think that I am not reading posts and want to

> comment, feel for others, and wish you all the best. And most

of

> all appreciate you all for being here for me during such a

trying

> time.

>

> I would love to go to the Boston dinner shindig if that is ok.

> Sharon are you going? If so karen could pick you up and bring

both

> of us...

>

> Take care!

>

> > Dear ,

> >

> > You can vent here, express your fears...whatever....this is a

big

> > thing in your life and whatever you decide to do will have a

big

> > impact on how the rest of your life plays out. It is why the

board

> > sprang to life...to have a place to go through this " event "

with

> > others who understand our fears, concerns and joys. Yes joys.

I

> > remember after surgery writing that I couldn't even get my

> friggin'

> > underpants on....and it was this group that bolstered me up

and

> got

> > me seeing that the future held the possibility that I could

dress

> > myself and care for my family...and why, here I am just a

little

> > while later wondering if I could sneak in a little downhill

skiing

> > while we are on vacation next week with my family.....alls to

> > say...as bad as you feel now....and as terrible as you are

going

> to

> > feel after surgery, you will survive it, and then be able to

get

> > back to your life.

> >

> > I am not a doctor, nor do I have any medical training, so I

have

> no

> > idea why Dr Rand wants you off methadone, or how soon before

> surgery

> > that would be....but if he was not suggesting how to

accomplish

> that

> > by transitioning to something else maybe you should call back

for

> a

> > clarification? I can't believe he wants you to go cold turkey

with

> > no replacement.

> >

> > I had surgery a year ago with Dr Rand. It is no cake walk...it

> will

> > not be easy...but I believe the better shape you are in on

> > the " front side " the better chances you have for a good

recovery.

> So

> > being proactive and quitting smoking (Yeah !!!) and maybe

even

> > changing to a different med protocol are all things that work

in

> > your favor for a better tomorrow.

> >

> > By the way, anyone that is telling you it is " almost over "

needs

> to

> > be told that the recovery is long...so it is not " almost

over " .

> The

> > only thing that is closer, is your surgery date...so I guess

in

> that

> > way, you are almost done waiting. But we will be here helping

you

> > along .

> >

> > My personal belief is that a good mental outlook helps get

through

> > the long days right after surgery when you will not feel like

> doing

> > much of anything, but you will have to fight to move and gain

> > strength if you want to recover. The way I always looked at

it, I

> > felt I picked a great surgeon and hospital. I arranged my

personal

> > life as best I could. I expected all those people, surgeon,

> nurses,

> > husband, child, to be in top form to meet my needs...but I

also

> had

> > a responsibility to be in top form too. For me that included

good

> > mental attitude, good physical condition and creating enough

space

> > in my life to heal.

> >

> > As an aside, earlier this week NPR had a doctor on speaking of

the

> > liklihood that quitting smoking would trigger depressive

episodes

> > with those who are predisposed to depression. He clearly felt

both

> > conditions should be treated together and urged people seeking

> > treatment to find doctors and therapists who recognized the

newest

> > information on these two conditions required a treatment for

> > both...smoking cessation and depression. I know you ar

somewhat

> past

> > the early stages of quitting the " green monster " but it may be

> that

> > if you really are feeling this blue that more is going on than

you

> > think. Please don't misunderstand....I think it stinks to be

> > us...this looms large in our lives and requires a complete

change

> of

> > plans for out lives....but still...

> >

> > Perhaps I read your post wrong and maybe you are really just

> saying

> > how frightening this all is. I know that once I accepted that

I

> was

> > headed to surgery my feelings became very complicated. Most of

my

> > friends didn't really see what the big deal was...I mean after

> all,

> > in this day and age, surgery is for everyone, stars, athletes,

ER

> on

> > t.v....it always comes out alright....right? Well I could

think of

> > hundreds of scenarios that were not like that....but in the

> end...I

> > still wanted to stop the agony and get on with my life. Dr

Rand

> > assured me that the pain I was experiencing would be gone

after

> the

> > first surgery and it was...and after the second days surgery

> things

> > have only gotten better.

> >

> > I am pain free, off narcotics and doing most everything I

> want...so

> > it is not an impossible thing...but you will have to want

> it....and

> > you will have to want it bad. After all, remember that it is

> > elective surgery. Should you choose to have it done, the

chances

> > are,if you follow your orders and prepare like your life

depends

> on

> > it, you will come through it just fine.

> >

> > Take Care, Cam

> >

>

> scoliosis veterans * flatback sufferers * revision candidates

>

April 22, 2006

Thanks, ! I'll add mino to my list of treatments to talk to my

LLMD about.

Jessie

>

> JUST READING ALOT OF THE POSTS ABOUT IV ANITIBIOTICS AND WHAT TO

> EXPECT...I AM NOT A DOCTOR BUT A PATIENT WHO HAD SEVERE NEURO

> LYME....I WANT PEOPLE TO KNOW ABOUT MINOCYCLINE AND ITS EFFECTS ON

> THE NERVOUS SYSTEM....BY FAR THE DRUG OF CHOICE FOR MYSELF WAS

> MINOCYLINE OTHERWISE KNOWN AS DYNACINE...MINO CROSSES THE BLOOD

> BRAIN BARRIER FIVE TIMES GREATER THEN DOXYCYCLINE....MINOCYCLINE

> DOES NOT HAVE THE SUN PROBLEMS OF DOXY....HOWEVER IT DOES HAVE

SIDE

> EFFECTS OF DIZZYNESS IF YOU HAVE NEURO LYME OR SOME OTHER

INFECTION

> OF THE NERVOUS SYSTEM OTHER THEN LYME...IT IS A HEAVY HITTER AS

FAR

> AS KILLING POWER IS CONCERNED BUT FROM WHAT IVE READ THERE IS NO

BAD

> SIDE EFFECTS SUCH AS LIVER OR OTHER DAMAGE...IT HAS BEEN AROUND

FOR

> 30 OR MORE YEARS AND HAS BEEN RESEARCHED VERY WELL...IT HAS NOW

BEEN

> FOUND TO SLOW OR STOP CERTAIN DISEASES IN ANIMAL MODELS FROM

ANOTHER

> REPORT IVE READ FROM A REPUTABLE SOURCE..THOSE DISEASES

> WERE:MS,HUNTINGTONS DISEASE,PARKINSONS DISEASE,ALS....THESE WERE

THE

> DISEASE MENTIONED IN THE ARTICLE...SO I FEEL THAT MINO HAD A MUCH

> BETTER EFFECT THEN EVEN IV ROCEPHIN...MY LLMD WHO IS THE BEST IN

THE

> COUNTRY HAS TOLD ME THAT IF YOU TAKE AN ANTIBIOTIC THAT IT MUST

> CROSS THE BBB...IF IT DOES NOT THEN IT WONT WORK...SO IF YOU HAVE

> NOT TRIED MINO ASK YOUR LLMD ABOUT IT..IT WORKED FOR VERY SEVERE

> NEURO LYME...IT ALSO BY THE WAY HAS THE ABILILTY TO CROSS THE

TESTES

> BARRIER...THAT IS ANOTHER FAVORITE HIDING SPOT OF SPIROCHETES AS

> THEY CAN NOT BE HARMED...GOOD LUCK TO EVERYONE

> ERIC

>

June 21, 2006

, you are right. You have to be patient, be VERY FATIGUED, have

roaming pains, maybe rashes, brain fog, etc. Keep reading the antibiotic

protocol at this site on Herxheimer reactions. You will get there. You have

to

believe that. No. 1 Rule. Now, second rule is to be good to yourself, know

that your emotions are going to be out of whack, let yourself cry, be depressed

and mainly, be good to yourself during this time.

July 1, 2006

Hello ...

I am sorry that I was unable to get back with you regarding your previous

email. But I really missed talking to you the last couple of weeks.. But I have

been fine lately. I still take the shots once a week but I think that I am going

to have it changed to humira soon..But that will be fine too cause I need the

shots to slow down...the procrit the vitamin b-12 shots..I need the

encouragement that you give.i find it very spiritually uplifting. You can never

depress me please express yourself fully...i intend to...you are the only other

person i can relate to regarding these problems ...As far as my mother she was

on enbrel for one year before she completely recovered..but she was bed ridden

for 6 years...Love you and waiting on your email

nicole jordan <rouen2m@...> wrote:

Hello

I wrote to the group about a week ago. Feeling extremely tired about 1 1/2 month

into the AP. Did anyone feel this symptom too? it is part of the " being patient "

test, so I have to endure this too. Thanks for any feedback, it would be

helpful,

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

Ring'em or ping'em. Make PC-to-phone calls as low as 1¢/min with

Messenger with Voice.

October 16, 2006

Hi Letisha, Your story tugged at my heart strings. You say you have been on

every medication there is. But you are in pain now and having a flare and don't

want anymore surgery. Have you read about the " Infectious Theory " and the

" Antibiotic therapy " that can help. I have scleroderma and it has helped me.

Try it, you have nothing to lose. That's why I did and now I am on my 10th

month of taking the antibiotic " Minocin " and I no longer have any pain, my

fingers are straight and my pulmonary fibrosis is regressing. I have not had

any more episodes of Raynauds since last February. What have you got to lose?

Try it. Dolores

Sapphy <sapphy75@...> wrote: Hello, my name is Letisha and I'm 31. I live

in Connecticut with my

parents and younger brother. I also have two older sisters. I was

diagnosed with JRA when I was 18 months old. My mother thinks I was

born with it because I was always sick and had fevers. She knew

something was wrong more so when I started walking and would tell

her I was hurting. It took her a while to find someone to be able to

give her a diagnosis. Once I was diagnosed, I had the same doctor

until I was 20.

It has been very hard growing up with arthritis but I've learned to

deal. It always helped that I have a very supportive family. If my

mother couldn't take me to an appointment, another family member

would make sure I got there. My Dad tends to shy away from

appointments, he always has. As they got older, my sisters would

take me. They're 9 and 10 years older than me. Even though I have

arthritis I think my life has been pretty good. My parents were good

about letting me try everything. My mother let me try tap dancing,

she let me jump rope. She said she knew I would probably get sore

but she didn't want to say no. She also made sure we always had

stairs because she thought that was good exercise for me. My doctor

says that may be why I didn't end up in a wheelchair when I was 11

like they thought.

I think I have been on every medication there is. Right now I'm on

Humira, Prednisone, Methotrexate and Folic Acid for my arthritis. I

also take Allegra and Nasonex for allergies and Prevacid for stomach

problems. Right now I'm in the middle of a big flare up which makes

it hard to do anything. I am hurting most of the time but I try to

keep going with my daily activities.

I've had my right shoulder replaced, my right hip replaced, both

wrists had to be straigntened out with surgery. I've also had

surgery on my feet. I have several pinched nerves in my neck due to

me now also having osteoarthritis and I have no feeling in my righ

arm and hand. I'm trying to avoid surgery but it's not looking too

well.

Hopefully this is a good introduction and I look forward to getting

to know everyone :-)

Letisha

To unsubscribe, email: rheumatic-unsubscribeegroups

October 17, 2006

Letisha....If I were you I would do all the research I could on Antibiotic

therapy and give it a try with an experienced doctor. Most rheumatologists

will refuse or tell you it does not work. I am here in Tennessee and can tell

you on the majority of people who give it a fair trial...one to two years)

find major relief. See if you can order any of the books by Henry Scammell and

read them thoroughly.

I went on standard therapies for eight years and went slowly downhill

all during that time. Joints started to twist and I was very close to being

wheelchair bound. I threw caution to the wind and traveled across the state to

an experienced doctor who treated with antibiotics in spite of my doctor

insisting I was being foolish. I asked the new doctor how many patients were

able to reach remission. He stated 70% if they stuck with the program. I

asked him if there was anyone who did not get some relief. He stated even

those

who did not reach remission got great relief and were able to get off many of

the more toxic meds and pain meds. I now have an internist here in

Nashville, Tenn who prescribes me Minocin and after reviewing my records has

put

several others on it. I asked him how they were all doing. He said all of

them

had significant pain relief over time. He is sold on antibiotic therapy.

I have been in remission for six years now and many joints have been

able to rebuild. At your age you might be able to do even better... as I am

59.

Everyone I have gotten to try Minocin has had a marked decrease in pain and

number of meds they needed over time. Several have, like myself, reached

remission. This is something you really need to research as you have many

years in front of you and you need to live them as painfree and medicine free

as

you can. Martha

November 15, 2006

Hi Channing,

Welcome to the list. I don't know that this is the kind of group you're looking

for, but I'll comment on some of the things you have written. Comments

interspersed. By the way, I have a nephew with autism, have worked with many

children and adults on the spectrum, and have worked in group homes, vocational

programs, in-home, and in the community.

S S

Hello My name is Channing. I am a female. I live in s,

North

Carolina . I have a Disability called Autism- I have the Aspergers

kind of autism. I was treated VERY MEANLY in a group home recently the

group home told me these things

1. That they would not let me go to the church I want to go to

*Did they give you a list of residents' rights when you moved in? The right to

practice your religion should be on that list. Were you there as a residnet or

for respite? How long were you there?

2. That they told me that I would not be able to use the bathroom

because of the fact I have problems with frequent urination

*Did you report this to someone in charge? How many others did you have to

share the bathroom with? Have you seen a medical doctor about the frequent

urination? If you drink lots of caffeine that could be part of what causes it.

3. They told me that I would not be able to use the phone- they wanted

a goal because I use the phone too much

*A goal makes sense unless you have a phone of your own. How many others did

you have to share the phone with?

4. They told me that I could not be independent at all and that I

would have to be treated as a prisoner- I have a lot of capabilitys my

capabilitys is I can stay at home without my mother when she goes out

of town for 3 nights, I know how to ride the City bus in the

community, I know how to walk in the neighborhood and go to places

like the Library and post office on my own

*Those are excellent and important skills.

5. They told me that I must go to a Day program and do retarded lo

Functioning contract work because of the fact I do not have a job - I

have had jobs in the community before like working at Pizza Hut,

working as a file Clerk at Nationsbank and working as a Janitor at a

preschool

*Sounds like you have some great experience. Is there an agency in your area

that offers job development or job coashing that you could connect with instead

of working in a workshop? Most group home don't have daytime staff so the

residents all have to have work, school, or day program.

Because of this I have gone back home to live with my ageing 64 years

old Mother and my ageing 68 years old dad . I also know if my parents

was to die and I was liveing at home with my parents I would become a

ward of the state of North Carolina and be placed in VERY

INAPPROPRIATE LIVEING SITUATIONS for someone like me- I do not want to

become a ward of the state of North Carolina. I AM TREATED VERY MEANLY

IN NORTH CAROLINA BECAUSE I HAVE A DISABILITY CALLED AUTISM- THE

ASPERGERS KIND OF AUTISM.

*Do you have any brothers or sisters? Do you have a case manager or service

coordinator?

I am also treated VERY MEANLY by people-pen pals because of the fact I

write very short letters with 2 or 3 questions ONLY. I do not have

much to say about my life because I have no friends where I live -

WHERE I LIVE THE PEOPLE CALL ME RETARDED ,PEOPLE CALL ME RUDE AND DO

NOT SPEAK TO ME AT ALL .

I am looking for e-mail pen pals that can accept very short letters

with 2 or 3 questions like for example:

1. Do you have any pets?

*No real pets, just spiders in the basement and bats in the " belfry " .

2. Do you like music?

*Some kinds, not heavy metal or opera.

3. What kind of music do you like?

*Oldies, mainly.

If you would like to be my pen pal please e-mail me at

the e-mails listed below:

<a href= " mailto:chanchan79%40excite.com " >chanchan79excite (DOT) com</a>

<a href= " mailto:channing28270%40gmail.com " >channing28270@gmail.com</a>

<a href= " mailto:channing28270%40myway.com " >channing28270@myway.com</a>

<a

href= " mailto:channingashbaugh%40netscape.net " >channingashbaugh@netscape.<wb\

r>net</a>

<a href= " mailto:channinga%40carolina.rr.com " >channingacarolina (DOT) rr.com</a>

<a href= " mailto:channing79%40hotmail.com " >channing79hotmail (DOT) com</a>

<a href= " mailto:sockscat23%40hotmail.com " >sockscat23hotmail (DOT) com</a>

I ALSO have a biggest fear in life my with my Autism -or Aspergers

Autism and me being 35 years old and my mom being 64 and my dad being

68 years old my biggest fear in life is As My parents get older I know

that one day my parents are going to die. I do not want to become a

ward of my state I am going to need a place to live what can I do

about haveing a place to live that will include these things:

Things I Expect in my place I want to call home

1. Haveing independent time without Group home staff to be at the

house when I am at the house

*Some people with autism can learn enough skills to live in an apartment with a

roommate or on their own and perhaps have a case manager or someone who comes in

once or a couple times a week to help with various things.

2. Being able to attend My Church that I want to attend every Sunday

without paying for a bus

*Does your church have a van that picks up people? Is it close enough to safely

walk to it?

3. Being able to go to my Church Activitys like Concerts and christmas

musicals without paying for a bus

*You may qualify for a discounted bus pass.

4. I want a person to help me with cooking- I DO NOT KNOW how to cook

at all

*Have you asked your parents to help yyou learn how to cook?

5. I want a person or a nest that promises to give me transportation

to my church that I want to attend Every Sunday

*That would be difficult. Is there someone who attends your church who lives

near you?

6. I would Like someone to talk to other than Clients if I am in a nest

*A nest?

7. I want to go to bed when ever I want to

*I can't do that because I have to get up and go to work in the morning.

8. Be able to use my phone without people saying I talk on the phone

too much and need a goal for useing the phone

*Having your own phone would be one possible way, but you would have to pay the

bill.

9. Haveing activities like being able to go to:

1. Dances

2. Bingo Games

3. Going to the Movies

4. Going Bowling

5. Being able to go swimming

6. Haveing Access to the YMCA

7. Going on trips like:

1. To the Beach

2. Camping

10. Not being told that I MUST go to a sheltered workshop or day

program if I do not have a Job

*This one is also tough. I don't know of any group homes that have day staff.

This is also part of having to go to bed at a certain time (or at least get up

at a certain time). Some might let you go to a volunteer opportunity instead of

a day program.

11. Being able to stay home if I am too sick to go to work

*Depends on how often you're sick and whther the doctor agrees that you're

really sick.

I am also looking for some pen pal I can join.

I am also looking for people that can join my I own.

Channing

_______________________________________________

Join Excite! - http://www.excite.com

The most personalized portal on the Web!

November 26, 2006

Hi and welcome. I have 18 yo twin boys that were

diagnosed aspergers two years ago. You very well could be

aspergers. One of my sons is bipolar,has anxiety disorder

and add. The other is OCD, depression, and anxiety so you

kind of sound like them. I know aspergers has a lot of

co-morbid diagnosis' that come along with it. You are lucky

you have found 2 good docs that are willing to be

openminded. One of my boys is medicated and the other

(bipolar one) is not. He had alot of difficulty finding the

right combo and gave up on meds all together. Ask any

questions you have and I am sure some of the bright helpful

people on here can help. Welcome again, Toni

> My name is . I'm not sure that this is the group for

> me, but in surfing around for support groups, I decided

> to check out some groups here in .

>

> I am a 49yo. guy with one child. She is 25yo. and is

> having many of the same issues as I.

>

> When I was about 6 or 7 years old I was dx'd dyslexic. In

> '87 I was dx'd Bi-Polar. Since then I have been dx'd ADD,

> having traits of OCD and BPD. I respond fairly well to

> the old traditional BP meds, but I need others to make

> them work more fully. I also seem to develop a tolerance

> to them. Over time, I'm taking the maximum doses allowable

> , supplimented by mood stableizers.

>

> A friend of mine is a Ph.D. in Early Child Development.

> She tells me that there is now scientific opinion, if not

> fact, that people of this description may actually be

> misdx'd, and are actually Asperger's.

>

> This is why I am exploring the possibilities. I have 2

> doctors, a Psychiatrist and a Psychologist that are very

> open-minded about this and are asking for information

> from a first-person perspective.

>

> Thanks for the ear.

>

> Dave

>

November 29, 2006

Hi Toni, and thanks. I'm glad you are out there to say " HI " . I saw my

psychiatrist yesterday, and she is interested in hearing more about the

co-morbidity of AS and AD/HD, and BiPolar. This aught to be interesting. I'll

keep you informed.

Re: ( ) Hello Everyone

Hi and welcome. I have 18 yo twin boys that were

diagnosed aspergers two years ago. You very well could be

aspergers. One of my sons is bipolar,has anxiety disorder

and add. The other is OCD, depression, and anxiety so you

kind of sound like them. I know aspergers has a lot of

co-morbid diagnosis' that come along with it. You are lucky

you have found 2 good docs that are willing to be

openminded. One of my boys is medicated and the other

(bipolar one) is not. He had alot of difficulty finding the

right combo and gave up on meds all together. Ask any

questions you have and I am sure some of the bright helpful

people on here can help. Welcome again, Toni

> My name is . I'm not sure that this is the group for

> me, but in surfing around for support groups, I decided

> to check out some groups here in .

>

> I am a 49yo. guy with one child. She is 25yo. and is

> having many of the same issues as I.

>

> When I was about 6 or 7 years old I was dx'd dyslexic. In

> '87 I was dx'd Bi-Polar. Since then I have been dx'd ADD,

> having traits of OCD and BPD. I respond fairly well to

> the old traditional BP meds, but I need others to make

> them work more fully. I also seem to develop a tolerance

> to them. Over time, I'm taking the maximum doses allowable

> , supplimented by mood stableizers.

>

> A friend of mine is a Ph.D. in Early Child Development.

> She tells me that there is now scientific opinion, if not

> fact, that people of this description may actually be

> misdx'd, and are actually Asperger's.

>

> This is why I am exploring the possibilities. I have 2

> doctors, a Psychiatrist and a Psychologist that are very

> open-minded about this and are asking for information

> from a first-person perspective.

>

> Thanks for the ear.

>

> Dave

>

November 29, 2006

I can't wait !! Thanks,

Toni

Re: ( ) Hello Everyone

>

> Hi and welcome. I have 18 yo twin boys that were

> diagnosed aspergers two years ago. You very well could be

> aspergers. One of my sons is bipolar,has anxiety disorder

> and add. The other is OCD, depression, and anxiety so you

> kind of sound like them. I know aspergers has a lot of

> co-morbid diagnosis' that come along with it. You are lucky

> you have found 2 good docs that are willing to be

> openminded. One of my boys is medicated and the other

> (bipolar one) is not. He had alot of difficulty finding the

> right combo and gave up on meds all together. Ask any

> questions you have and I am sure some of the bright helpful

> people on here can help. Welcome again, Toni

>

>> My name is . I'm not sure that this is the group for

>> me, but in surfing around for support groups, I decided

>> to check out some groups here in .

>>

>> I am a 49yo. guy with one child. She is 25yo. and is

>> having many of the same issues as I.

>>

>> When I was about 6 or 7 years old I was dx'd dyslexic. In

>> '87 I was dx'd Bi-Polar. Since then I have been dx'd ADD,

>> having traits of OCD and BPD. I respond fairly well to

>> the old traditional BP meds, but I need others to make

>> them work more fully. I also seem to develop a tolerance

>> to them. Over time, I'm taking the maximum doses allowable

>> , supplimented by mood stableizers.

>>

>> A friend of mine is a Ph.D. in Early Child Development.

>> She tells me that there is now scientific opinion, if not

>> fact, that people of this description may actually be

>> misdx'd, and are actually Asperger's.

>>

>> This is why I am exploring the possibilities. I have 2

>> doctors, a Psychiatrist and a Psychologist that are very

>> open-minded about this and are asking for information

>> from a first-person perspective.

>>

>> Thanks for the ear.

>>

>> Dave

>>

November 29, 2006

Dear All,

Hi! I am a member of the group but don't often write but as the topic of

co-exisitng

conditions came up, I thought I'd post our experience if it helps anyone. I have

a ten-year-

old daughter who has Aspergers Syndrome, ADHD and Bipolar Disorder.

Aspergers was the first diagnosis; probably both my husband and I have a twinge

of it.

Then in kindergarten she was diagnosed with ADHD (most likely I do too) and once

on

ritalin and then concerta to even out the dosage, she could slow down the

impulsivity to

make a good choice. If we'd not put her on something, she would not have been

able to be

in school as she hurt someone every day and it was awful. It's a bad combination

to have

trouble getting your words out and impulsivity when frustrated or angry. At the

time she

was also in speech therapy and occupational therapy and was treated by a child

psychiatrist as the developmental pediatrician in the area was terrible. I also

took an ADHD

parenting class via a child psychologist. Still endured extreme behaviors.

She also exhibited extreme OCD which we treated with Zoloft successfully. When

we tried

to take her off the Zoloft, the OCD came back full force. The doc tried changing

medicine

from Zoloft to one that would increase appetite but I can't recall the name of

it. She didn't

stay on it long. When we put her back on the Zoloft she immediately became

manic,

thinking she could fly and alternating with severe weepy depression which didn't

stop

when we stopped it almost immediately (turned out we have a close family member

who is

also bipolar). Since then we've had her on Trileptal for the bipolar disorder

which worked

pretty well alone for a good while and as recently the bipolar symptoms

increased, we

have had to add abilify. We tried Risperdal but while it did help a little, it

was not as good

as the abilify. If our experience helps anyone out there, I hope it does. I

really don't like

having to have all these medications but they are a necessary evil. She could

not be in

school without it. There are a few times I thought I'd have to hospitalize her.

I'd say there are clear indications that she fits the diagnosis of all three.

Wish she didn't

and tried for a year to do just behavioral intervention to no avail. Meds were a

last resort

and the first was concerta which worked like a dream but nobody told us that

after a while

you'd have to add clonidine or the child can't sleep. Then of course the OCD

came up and

it was extremely debilitating and after at least six months had to be treated.

Oh, forgot to

mention...the Trileptal addressed both the OCD and the Bipolar Disorder. It was

only

prescribed for the Bipolar Disorder but had the nice effect of treating the OCD

as well.

The abilify I'd like to get her off of but am afraid to. She was in jeopardy of

losing the

ability to be in school again without it. The teacher was pulling her hair out.

We have her

on a teeny tiny dose and it is working. She'd become unable to function in

school. No idea

what was going on. No focus. We tried upping the Concerta but it didn't work at

all; made

her manic so dropped it back down to what was the old therapeutic dose that was

like

turning a switch on and off for her concentration and instead had to go with

bipolar

medds like the abilify. Hate that. The developmental ped seems to be at a loss

where we

live now as far as bipolar disorder and there is a new child psychiatrist that

we'll start with

who may be able to help more although she is very stable right now.

It's very important to find good doctors. I've found it takes time to build up

rapport and for

them to get to know you. We are lucky to have a good special ed teacher and a

full time

aid who are well versed in AS. Makes a world of difference. I don't have a child

who is

hiding under the school building and a school who calls for me to pick her up

daily

anymore. She is in regular ed class full time and right now, knock on wood,

aside from

small interruptions in class from time to time, she is doing very well. IQ is of

normal

intelligence. I do think we sacrificed learning for the socialization of school.

I was

definitely able to teach her more and she would ace the standardized school

tests which

she's not doing since the school has been doing the educating. But as it's

mainly a social

skills disability, I felt she needed to be in society vs. home schooled. For

what it's worth if

this helps anyone...

Take care,

>

> Hi Toni, and thanks. I'm glad you are out there to say " HI " . I saw my

psychiatrist

yesterday, and she is interested in hearing more about the co-morbidity of AS

and AD/HD,

and BiPolar. This aught to be interesting. I'll keep you informed.

>

> Re: ( ) Hello Everyone

>

> Hi and welcome. I have 18 yo twin boys that were

> diagnosed aspergers two years ago. You very well could be

> aspergers. One of my sons is bipolar,has anxiety disorder

> and add. The other is OCD, depression, and anxiety so you

> kind of sound like them. I know aspergers has a lot of

> co-morbid diagnosis' that come along with it. You are lucky

> you have found 2 good docs that are willing to be

> openminded. One of my boys is medicated and the other

> (bipolar one) is not. He had alot of difficulty finding the

> right combo and gave up on meds all together. Ask any

> questions you have and I am sure some of the bright helpful

> people on here can help. Welcome again, Toni

>

> > My name is . I'm not sure that this is the group for

> > me, but in surfing around for support groups, I decided

> > to check out some groups here in .

> >

> > I am a 49yo. guy with one child. She is 25yo. and is

> > having many of the same issues as I.

> >

> > When I was about 6 or 7 years old I was dx'd dyslexic. In

> > '87 I was dx'd Bi-Polar. Since then I have been dx'd ADD,

> > having traits of OCD and BPD. I respond fairly well to

> > the old traditional BP meds, but I need others to make

> > them work more fully. I also seem to develop a tolerance

> > to them. Over time, I'm taking the maximum doses allowable

> > , supplimented by mood stableizers.

> >

> > A friend of mine is a Ph.D. in Early Child Development.

> > She tells me that there is now scientific opinion, if not

> > fact, that people of this description may actually be

> > misdx'd, and are actually Asperger's.

> >

> > This is why I am exploring the possibilities. I have 2

> > doctors, a Psychiatrist and a Psychologist that are very

> > open-minded about this and are asking for information

> > from a first-person perspective.

> >

> > Thanks for the ear.

> >

> > Dave

> >

December 2, 2006

<<<<<<<<I found the 'bullseye' mark all over my body, but never

developed the rash and I never got meningitis. The doctors constantly

told me that I couldn't possibly have Lyme's because I never developed

the 'common' symtoms. Kris>>>>>>>>>>

Kris,

The bullseye mark, where ever it shows up on your body is a definite

dx of lyme disease!!!!!! Did you take pictures? Always take pictures.

Always keep the tick and send it for testing. Always keep a list of

your symptoms with dates. Meningitis doesn't surface in everyone with

lyme disease nor does the bullseye or the rash.

Common symptoms according to incompetent Drs...they believe you only

have a few symptoms, fever and rash the top two. We know that it

includes many, many, more!!!!!!

I hope someone can help you with a Dr. in MD. I only know LLMD's in

NJ.

In the mean time, attack the spirochetes with natural abx, like olive

leaf extract, garlic, etc. Stay away from sugar, they thrive on

it...and drink, lots and lots of water!! If you can stand it, eat a

clove of garlic a day....it will kill some of the bugs off and make

sure you increase your water intake, so that you can flush the dead

ones out of your body. You feel horrible with them alive in your body,

you feel even worse when there is a big die-off.....so flush, flush,

flush!!

Good Luck

Conniek nwnj

December 2, 2006

<<<<<<<<I found the 'bullseye' mark all over my body, but never

developed the rash and I never got meningitis. The doctors constantly

told me that I couldn't possibly have Lyme's because I never developed

the 'common' symtoms. Kris>>>>>>>>>>

Kris,

The bullseye mark, where ever it shows up on your body is a definite

dx of lyme disease!!!!!! Did you take pictures? Always take pictures.

Always keep the tick and send it for testing. Always keep a list of

your symptoms with dates. Meningitis doesn't surface in everyone with

lyme disease nor does the bullseye or the rash.

Common symptoms according to incompetent Drs...they believe you only

have a few symptoms, fever and rash the top two. We know that it

includes many, many, more!!!!!!

I hope someone can help you with a Dr. in MD. I only know LLMD's in

NJ.

In the mean time, attack the spirochetes with natural abx, like olive

leaf extract, garlic, etc. Stay away from sugar, they thrive on

it...and drink, lots and lots of water!! If you can stand it, eat a

clove of garlic a day....it will kill some of the bugs off and make

sure you increase your water intake, so that you can flush the dead

ones out of your body. You feel horrible with them alive in your body,

you feel even worse when there is a big die-off.....so flush, flush,

flush!!

Good Luck

Conniek nwnj

December 13, 2006

Hi Channing,

Some of us replied to your previous e-mail (on-list). Did you have a chance to

read those responses?

You've held some of your jobs longer than I've held some of mine. 2 years is

the average in social services. They may be talking about reasons for and

circumstances around leaving the jobs.

What is their reason for wanting to test so much?

S S

I am a 35 years old female that has autism or aspergers syndrome

that

is being treated mean in psych evaluations and IQ tests the way I am

treated mean in psych Evaluations and IQ Tests is:

1. People call me RETARDED

2. People call me BORDERLINE PERSONALITY DISORDER

3. People call me CRAZY

4. People call me a MAJOR PSYCH PROBLEM THAT CANNOT HOLD A JOB- I had

jobs at Pizza hut which I was at from December 1988- May of 1991,

Nations Bank May 1991- July 1993 , a school Janitor from June of

1995-May 2001 and Pizza Hut from October 2004-November 2005-HOW IS

THIS A MAJOR PSYCH PROBLEM THAT CANNOT HOLD A JOB

they also treat me mean by keeping me with a bad record of 10 Mental

Hospitalazations and My 2 week time in Jail for Assault and Injury to

Real Property which was done in October of 2001

I do not feel good getting treated mean-

1. How am I suppose to get my bad record cleaned and not be called

1. RETARDED

2. BORDERLINE PERSONALITY DISORDER

3.CRAZY

4. A MAJOR PSYCH PROBLEM THAT CANNOT HOLD A JOB

and just be called autism or aspergers.

And now my parents are looking for another psych test up to where I am

scared to have a psych test because I get called

1. RETARDED

2. BORDERLINE PERSONALITY DISORDER

3. CRAZY

4. A MAJOR PSYCH PROBLEM THAT CANNOT HOLD A JOB

every time I have a psych test

if you know some answers please e-mail me at

<a href= " mailto:chanchan79%40excite.com " >chanchan79excite (DOT) com</a>

<a href= " mailto:channing28270%40gmail.com " >channing28270@gmail.com</a>

<a href= " mailto:channing28270%40myway.com " >channing28270@myway.com</a>

<a href= " mailto:channinga%40carolina.rr.com " >channingacarolina (DOT) rr.com</a>

_______________________________________________

Join Excite! - http://www.excite.com

The most personalized portal on the Web!

December 13, 2006

Hello Channing,

Have you ever considered a special diet that might help with your ability to

control your behavior ?

You might think about doing a Gluten Free diet for a month to see how that

helps.

If you have spells where your behavior gets you into trouble, maybe you

could describe those to us and we might be able to help.

I assume that you live with your parents, would you or they be willing to

purchase some supplements such as Fish Oil which has been show to have a

calming affect.

Good Luck !

Neil

_____

From: [mailto: ]

On Behalf Of Shepard Salzer

Sent: Wednesday, December 13, 2006 9:11 PM

Subject: RE: [ ] Hello Everyone

Hi Channing,

Some of us replied to your previous e-mail (on-list). Did you have a chance

to read those responses?

You've held some of your jobs longer than I've held some of mine. 2 years is

the average in social services. They may be talking about reasons for and

circumstances around leaving the jobs.

What is their reason for wanting to test so much?

S S

I am a 35 years old female that has autism or aspergers syndrome that

is being treated mean in psych evaluations and IQ tests the way I am

treated mean in psych Evaluations and IQ Tests is:

1. People call me RETARDED

2. People call me BORDERLINE PERSONALITY DISORDER

3. People call me CRAZY

4. People call me a MAJOR PSYCH PROBLEM THAT CANNOT HOLD A JOB- I had

jobs at Pizza hut which I was at from December 1988- May of 1991,

Nations Bank May 1991- July 1993 , a school Janitor from June of

1995-May 2001 and Pizza Hut from October 2004-November 2005-HOW IS

THIS A MAJOR PSYCH PROBLEM THAT CANNOT HOLD A JOB

they also treat me mean by keeping me with a bad record of 10 Mental

Hospitalazations and My 2 week time in Jail for Assault and Injury to

Real Property which was done in October of 2001

I do not feel good getting treated mean-

1. How am I suppose to get my bad record cleaned and not be called

1. RETARDED

2. BORDERLINE PERSONALITY DISORDER

3.CRAZY

4. A MAJOR PSYCH PROBLEM THAT CANNOT HOLD A JOB

and just be called autism or aspergers.

And now my parents are looking for another psych test up to where I am

scared to have a psych test because I get called

1. RETARDED

2. BORDERLINE PERSONALITY DISORDER

3. CRAZY

4. A MAJOR PSYCH PROBLEM THAT CANNOT HOLD A JOB

every time I have a psych test

if you know some answers please e-mail me at

<a href= " mailto:chanchan79%40excite.com " >chanchan79excite (DOT) com</a>

<a

href= " mailto:channing28270%40gmail.com " >channing28270@gmail.com</a>

<a

href= " mailto:channing28270%40myway.com " >channing28270@myway.com</a>

<a

href= " mailto:channinga%40carolina.rr.com " >channingacarolina (DOT) rr.com</a>

_______________________________________________

Join Excite! - http://www.excite. <http://www.excite.com> com

The most personalized portal on the Web!

January 2, 2007

hello i know what you are going i went though the same with my 4 year old at

that age

april /mark jr

<mileman1951@...> wrote:

Im new here and I am getting very frustrated with my 3 year old

granddaughter . She is NOT talking but understands . For example I can

tell her to get me something and she will etc. But she primarely just

points when she wants something and jabbers . I have asked her to tell

me what she wants but she gets upset when I do that and I just give

in...yep im a chump . Im a softee to a cute blond haired blue eyed

child ,or any child as far as that goes I guess .( I am a retired cop

and consider myself a little tough ..except for children aggg im a

marshmellow) I know she says a few basic words because ive heard

them , but she just will not talk or will even try . Are there any

ideas about what I may do to help with this problem .

Thanks ////

img scr=*http://i2.photobucket.com

__________________________________________________

January 2, 2007

,

I understand your frustration, and my husband, who is currently still

on the job, would understand your " softee " attitude.

However, that isn't enough when dealing with a little child who is

language delayed.

I am not sure on the circumstances with your grand daughter. Does she

live with you? or her parents? Are her parents concerned as well?

Sometimes parents are in denial, and that makes it more difficult for

grandparents or other loved ones who recognize a problem.

My adcvice is to buy the Late Talker Book, and visit the Cherab.Org

webiste while waiting for you book. This will give you a better idea if

Apraxia is what you are dealing with.

Also, you can teach your grand daughter a few simple signs to help

faciltate basic wants and needs. Such as " eat, drink, more, all done,

play "

I am not sure what state you are in, but you could try calling your

counties Early Intervention program (typically it is birth to age 3)

So not sure if that would work for you though...

After EI, children transition into their public school systems for the

Pre-school program where additional services can be implented. Such as

Speech, occupatation therapy, and physical therapy.

I hope this helps some...

Dawn in NJ

>

> Im new here and I am getting very frustrated with my 3 year old

> granddaughter . She is NOT talking but understands . For example I

can

> tell her to get me something and she will etc. But she primarely just

> points when she wants something and jabbers . I have asked her to

tell

> me what she wants but she gets upset when I do that and I just give

> in...yep im a chump . Im a softee to a cute blond haired blue eyed

> child ,or any child as far as that goes I guess .( I am a retired cop

> and consider myself a little tough ..except for children aggg im a

> marshmellow) I know she says a few basic words because ive heard

> them , but she just will not talk or will even try . Are there any

> ideas about what I may do to help with this problem .

> Thanks ////

>

January 2, 2007