trying again

[Guest guest]

Hey Jami,

Thanks for your message! It's nice to know that I am not alone.

During my cardio this morning, I reached a true level 10 while

running. I felt so great afterwards. I thought my previous workouts

were intense enough, but apparently not. I need to push myself

harder each time, and I will. I registered for the next round and

will start on May 22nd. This time I will plan everything. I will

succeed. With support like this, how can I not succeed?

Kit-you are talking to a former carbohydrate addict. Before BFL, my

diet consisted of primarily carbs. This was a big change for me. I

feel so much better eating this way. I just don't think that I would

be able to cut the carbs out of my last two meals. I think I would

feel too deprived. I will see how things progress. I guess if you

want something bad enough, you have to make it happen. Thanks for

your advice.

Jannette

[Guest guest]

In a message dated 4/1/02 2:55:59 PM Pacific Daylight Time,

writes:

> Did you have any luck reserving a reseasonable fare with the airlines?

> Just a yes or no, don't need the amount. Because, even if you had

> tried the other route, prayers that you'll have a safe trip and once

> again the answers needed for . Will be with you in spirit for

> support. Take care and hang in there as always your e-buddies who

> care and always try to help out even if things don't work out but IT

> has been tried,

Yes, thank God....ironically, the regional office of MTP called me today and

gave me a list of " alternatives " in TX to try....hehe...one of them was an

educational service, not even a medical facility, can you believe that one?!

The gal told me that if I can get my doctor to be more specific, they will

forward another letter to Austin for reconsideration. I did process an

appeal, but if they get the second letter and agree this time, we can cancel

the appeals process.

Unfortunately, it won't be for this trip, but maybe another trip in the

future? You would laugh if I told you that they would either reimburse us

for any trips in TX for mileage....however, they would consider Greyhound! I

told them " are you crazy? " There is NO WAY we can travel ten hours to

Houston by bus, making stop after stop and arrive all in one piece......this

is with a kid who's attention span is about 3 sec. and is hyperactive!!!!

She said MTP would use the most " cost effective means of transportation " , but

would need yet ANOTHER letter from the doctor, once I was approved for

services, stating the need to get there asap because of 's challenging

behaviors. I wouldn't mind the drive, however, I wouldn't want to do

Greyhound and be at their mercy, stopping all the time. Southwest Airlines,

with all their discounts, probably would even be cheaper than the darned bus

anyway!

I am going to contact 's pediatrician and tell her to do a letter over

again, being more specific as to the doctors, clinics and hospitals we've

been to and that Dr. Capone is the ONLY doctor that deals specifically with

dually diagnosed kids with DS.

Medicaid just doesn't get it.......I explained that sure, there are plenty of

childrens' hospitals and DS clinics throughout TX, but NONE of them are

specifically limited to dually diagnosed kids...furthermore, most children

treated at children's hospitals are typical kids with ADHD, etc. and don't

have the DS dx too.

We'll see, I think I've rattled more than a few chains with my

claim....hehe......

Thanks for everyone's support and input,

[Guest guest]

Wow! ,

More news? I guess in a ways its good for Round 2. Lets hope the

doctor writes a good letter which I'm pretty sure she has before but

to include the reasons why. The reasons why behavior occurs like " the

out-of-sync behavior for reasons when traveling, the assistance

needed as he can not be alone and why it takes both parents to help

out. As this is a confusing world for kids like ours and of course

being non-verbal,etc. Plus you've taken him to many docs and no one

has found ways to understand his medical needs.

Greyhound? No Way! Even I would not travel a long distance alone in

the Greyhound as I have from Quantico to Del Rio, it took practically

3 days, I was scared of flying back then, not anymore, then to

imagine traveling with , no way. Many LUCK! Tic Toc, Tic toc

time is near. Stay posted.

Oh! HAPPY FOOLS DAY!

Irma,13,DS/ASD

[Guest guest]

In a message dated 4/1/02 5:29:59 PM Central Standard Time, Ltb3105@...

writes:

> Medicaid just doesn't get it.......I explained that sure, there are plenty

> of

> childrens' hospitals and DS clinics throughout TX, but NONE of them are

> specifically limited to dually diagnosed kids...furthermore, most children

> treated at children's hospitals are typical kids with ADHD, etc. and don't

> have the DS dx too.

>

> We'll see, I think I've rattled more than a few chains with my

> claim....hehe......

>

> Thanks for everyone's support and input,

>

>

>

>

,

We went through a tough time with Wisconsin MA when needed heart

surgery out of state. I think when a cardiologist says ASAP and out of state

in one sentence the wheels of govt. grind to a halt. Thank goodness the

social worker (he was our foster son at the time) was quite vocal with

everyone and got things done.

They could reimburse you after the fact. I would save every receipt and if

you are appealing submit for reimbursement after the fact. You attempted to

get prior author.

Karyn

[Guest guest]

In a message dated 4/1/02 6:29:21 PM Eastern Standard Time, Ltb3105@...

writes:

> I am going to contact 's pediatrician and tell her to do a letter over

> again, being more specific as to the doctors, clinics and hospitals we've

> been to and that Dr. Capone is the ONLY doctor that deals specifically with

> dually diagnosed kids with DS.

,

I agree with Diane. YOU write the letter and have the doc sign it. I've

done this a few times. One, Maddie's teacher actually wrote and teh doc

signed...she knew the terminology that we would need at Maddie's transition

IEP.

Donna

[Guest guest]

>

> ,

> I agree with Diane. YOU write the letter and have the doc sign

it. I've done this a few times. One, Maddie's teacher actually

wrote and teh doc signed...she knew the terminology that we would

need at Maddie's transition IEP.

> Donna

Y'all the best, great idea!! I totally agree with this. , you

busy writing this letter?

Irma

[Guest guest]

--especially if you need a letter for insurance benefits - HMO or Medic

aide. Call and ask what they want in a letter, write the letter according

to their format, and take/send it to the doctor for his signature. And ask

your doctor if he has e-mail. Our ped. does. This letter junk gets taken

care of very easily when you can e-mail, he can amend, sign and mail.

Some doctors will use e-mail only for correspondance and not for medical

discussions, so be sure to ask the parameters if the doc has an e-mail.

Sara

--Original Message Follows----

From: " mum592001 " <ICANFIELD@...>

Reply-

Subject: Re: Trying Again

Date: Wed, 03 Apr 2002 04:39:28 -0000

>

> ,

> I agree with Diane. YOU write the letter and have the doc sign

it. I've done this a few times. One, Maddie's teacher actually

wrote and teh doc signed...she knew the terminology that we would

n

eed at Maddie's transition IEP.

> Donna

Y'all the best, great idea!! I totally agree with this. , you

busy writing this letter?

Irma

Sara - Choose to make lemonade, not complain about the lemons.

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

Dear -MD,

I can only speak for myself. Most of us on this board have a chronic

spondy...either AS or Reiter's. I have had AS since about 1972. I had a 10 year

remission during those early years with hardly any symptoms at all when I

raised

9 children and a couple of grandchildren. For the rest of the time, it has

been a pretty continuous battle. However, during these later years I've been

able to do hard gardening, walking mountain trails, most all of my daily

housework with the help of medications and a persistent attack attitude

(pushing

through chronic pain).

I believe everyone is different and we are all at different levels of pain

and disability and some days can be much better than others. Dealing with

chronic illness really requires coping skills and a positive attitude towards

our

future activities. I've found that when you really, really like something (a

hobby or job) you can push your body to go the extra mile. (Our +Dave knows

what I'm talking about through his activities in his earlier years as a

mascot). If your body can't take it for a few days or weeks or months....we

have

to take a breather and try it another day when we feel more up to it. Don't

give up on your dreams or become too frustrated....because tomorrow....your

Reiter's may not interfere with your athletic sports.

We don't have a cure, but there are medications that help and they are

forever working on drugs that one day, may provide a cure.

We can't give up on that, especially at your prime age. I've pretty much

tried all the drugs....indocin for 20+ years, which was the only drug of

choice.

Newer ones have show some promise, if your insurance company will cover the

expense.

Best regards, Connie

[Guest guest]

On Mon, 14 Nov 2005, Mike Dahmus wrote:

> I posted a week or so ago but didn't hear much - I'm looking to see if

> anybody has either personally or known somebody who has recovered

> enough from chronic Reiter's (reactive arthritis) to resume vigorous

> athletics,

Hi Mike,

Yes, it does happen!

I've had Reiter's for 10 years (when I was 26) following a bout of food

poisoning. My first, very severe flare went into remission without any

medication after 1 year. There was a gradual, but noticeable improvement

in symptoms. It took me a while to build back all the muscle mass I had

lost, but I went back to playing soccer three times a week for 3 years and

was basically symptom free during that time period.

In 2000, I had a second flare which did not improve by itself at all,

maybe not unlike what you're going through right now. After about 10

months I gave up waiting for a spontaneous remission and went onto

sulfasalazine. I slowly ramped up the medication (this is important I

think, since many people find they can't tolerate sulfasalazine during the

first few weeks of taking it). I found that sulfasalazine made a major

difference within just 2 or 3 months. After regaining some muscle, I

picked up soccer and biking again (about 6 months later), and have been

exercising 3 to 4 times a week since then. I went off the sulfasalazine

(very gradually) last year for fertility reasons (if you want to have kids

any time soon, beware, because sulfasalazine can cause " apparently

reversible male infertility " -- it has been reversible in my case, but it

took about 1 year to do so...). Since I've been off the sulfasalazine, I

usually take ibuprofen before I play soccer (pretty high impact) -- I

found it reduces inflammation in my heels afterwards. At this stage I am

not completely symptom free, but never have been since the second flare.

At the same time the symptoms are, at this point, so mild that they do not

seriously constrain my activities, except maybe for skiing for days on

end.

Are you taking any disease modifying medication right now? I was told by

my docs at Stanford that I was pretty much an ideal responder to

sulfasalazine, so it may not work for you, but it's worth a try.

Best of luck, let me know if you have any questions.

Cheers,

Bart

[Guest guest]

Mike,

I have been on Remicaide for almost four years. Prior to the Remicaide I was

one big " hurt locker " and could not participate in anything. In addition,

prior to being diagnosed, over ten years ago I was very athletic, running,

pumping iron, hiking etc. Within three months of starting Remicaide I got

my life back and currently remain very active. Go to the gym every day at

5:30 am for and hour and half and then I'm ready to tackle all the worlds

problems. When my body says rest I tend to listen and take it easy as the

old joints and injuries sure take a lot longer to heal now. I also utilize

massage therapy 9 work benefits) and the stream room (gym) on a regular

basis. My rheumy is great as he reads me the riot act when he thinks I am

overdoing it.

Regards,

Bob

St. Albert Alberta

[Guest guest]

>

> Are you taking any disease modifying medication right now? I was told by

> my docs at Stanford that I was pretty much an ideal responder to

> sulfasalazine, so it may not work for you, but it's worth a try.

After my first flare, I was on azulfidine (same thing, I think) and

Vioxx (mostly those two anyways; occasional switches based on

insurance demands) for about 2 years; never got full function back;

resigned myself to 80-90% function, which persisted even when I had to

go cold-turkey off those drugs due to stomach complications.

Now after the second flare, much longer, I'm at perhaps 60% function

in lower joints and not yet on anything but anti-inflammatories. Was

on Celebrex at the start; now am on some generic thing that doesn't

work all that well and has serious negative side-effects as well.

Now the 80-90% function is looking pretty good. I fear the 60% may be

my new " good " plateau since it's the best I've been able to manage for

three months now.

Regards,

MD

[Guest guest]

Hi Rob

Who is your Rheumy up there in the Cold White North?

I was in a Study through the U of Alberta and it didn't work.

Blessings

+Dave

[Guest guest]

" I went off the sulfasalazine (very gradually) last year for fertility reasons

(if you want to have kids any time soon, beware, because sulfasalazine can

cause " apparently

reversible male infertility "

i have never heard of this. i've been on sulfasalazine for about 10 years and

this side effect is never one that was discussed with me. can anyone shed more

light on this? i'm not married and have no kids yet, so this might be of

importance to me at some time.

warmest regards ~ james

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

FareChase - Search multiple travel sites in one click.

[Guest guest]

On Tue, 15 Nov 2005, Clost wrote:

> i have never heard of this. i've been on sulfasalazine for about 10

> years and this side effect is never one that was discussed with me.

Hi ,

This wasn't originally discussed with me either, but when going to a

fertility doctor one of the first questions was " Are you taking

sulfasalazine " , so it is a well known side effect. If you google

" sulfasalazine " and " male infertility " you'll find lots of pages. Here's

one: http://www.drugs.com/pdr/SULFASALAZINE.html

For more research oriented articles, you can go to:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi

and type in " sulfasalazine infertility " . You will get lots of hits.

By the way, I went off the sulfasalazine *gradually* because I thought

that might reduce the chance of arthritis symptoms cropping back up.

Cheers,

Bart

[Guest guest]

Dave,

Not sure if we can give the Dr's name on the list. Send me an e-mail at

rcb01@... and I will give you his name.

Bob

[Guest guest]

janita morris <heartinmymouth@...> wrote: Wishing you all a very

Happy Christmas at the Natural Perfumery Group

offerings of

perfumes and spice

gold frankincense & myrrh

love

Janita x

I have tried to send a snowy picture attachment twice and it says it is sent

with an attachment but when it arrives here..... nowt....... any ideas does

something get removed or screened?

Janita

Send instant messages to your online friends http://uk.messenger.

[Guest guest]

I have to agree. Sometimes finding the exact point of the pain is really difficult to do. Pain is often deferred and what hurts may not even be the root of the problem. I have had alot of problems with my knees and come to find out it was from the back not my knees at all. After weeks of therapy for my back I was much better.....

Donna************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour

[Guest guest]

I've posted my " adventures " of taking ldn (full dose recommended by dr) and

acyclovir together, resulting in pretty bad side effects. Tonight I am going to

do the 1.5 ldn, no acyclovir and see how that goes. I have chronic fatigue, so

when my hands and feet felt numbish/tingling, and I felt more spacey than usual,

I was freaking out a bit. Now I feel ok as before, am a little worried, but I

have to try.