,

[Guest guest]

Sure will keep you posted. Was nice to meet you and others at the PBC

conference.

aumesh

----------

At 12:34 PM 08/20/2001 EDT, you wrote:

>Dear Aumesh,

>Let us know how Raj does with college.

>I sure enjoyed meeting you and your wife in Las Vegas.

>Take care,

>

>

[Guest guest]

Hi ,

How is doing in his band? How has the personality challenged

orthotist been lately? How much longer before you guys end up in

Europe? A million questions, huh?

Hope all is well!

- mom to Aidan

STARgrad 2/4/04

GR Mi

> > ok, this is a totally aesthetic question. it is hard to pick a

> pattern based on looking at the graphics.

> >

> > the orthotist showed me a print out of graphics but tells me the

> actual helmets don't turn out the same- graphics are stretched out,

> colors are different, etc. I liked the camouflage, ocean, and fly

> and drive. any recommendations? i am hoping to order it this

> afternoon so any quick input is appreciated.

> >

> > thanks,

> > alpana

[Guest guest]

Hi,

Thanks for asking! The orthotist is much better. I guess he just

had a few bad days. We leave for Germany a week from Tuesday, with

our last appointment this Friday. I can't believe it!

He's doing super in it, although I think the movement has slowed

down a bit.

Thanks !

and

> > > ok, this is a totally aesthetic question. it is hard to pick a

> > pattern based on looking at the graphics.

> > >

> > > the orthotist showed me a print out of graphics but tells me

the

> > actual helmets don't turn out the same- graphics are stretched

out,

> > colors are different, etc. I liked the camouflage, ocean, and

fly

> > and drive. any recommendations? i am hoping to order it this

> > afternoon so any quick input is appreciated.

> > >

> > > thanks,

> > > alpana

[Guest guest]

Pam,

I'm definitely taking heed. I might have to defer my admission/start date at USF

until next fall. We'll see.

--

-Pam L - <pladd@...> wrote:

Hi ,

I hope you listen to Lil.

This is the best advice I have seen on any Graves' list in a long , long

time !

Take your time and really think this through.

-Pam L-

___________________________

Hi and all,

Number one: have you made sure about whether you'll have insurance after you

graduate? It might be worth it to prolong school to keep health insurance

-- new ones might have bad provisions for those with pre-existing health

conditions. maybe go to summer school and take care of your health while

insured?

Two: Have you thought about a low-stress temporary job instead of getting a

full time career type job while you get your health under control? I hope

you'll consider that instead of jumping into a career type job or grad

school not only because those are high stress, but it's so easy to get too

wrapped up in them that you don't have time to take care of yourself.

Besides, I think grad schools like it when applicants work at least a little

before commiting.

Hoping you'll avoid the mistakes I made,

Lil

[Guest guest]

Hi , I have an article on the bladder and lyme, it wasn't on computer,

but if you e-mail me privately, I will send it snail mail

hang in there

Hugs,

Connie, Mi Cslyme@...

[ ] Any link between Kidney Disease and Lyme or Erlichiosis

>I did a medical search and really found very little information on a line

> between kidney disorders/disease and Lyme disease or erlichiosis but that

> doesn't mean it doesn't exist. What is sad is how much more research

> there is

> done on animals then there is on humans and in the literature there is a

> report

> of dogs developing kidney failure with chronic lyme.

>

> I have gotten progressively more ill in the last six months and started

> having urological problems including bleeding and not being able to go the

> bathroom. First, I was diagnosed with neurogenic bladder which is what MS

> patients

> get and several doctors (neurologists, urologists, spine specialists,

> etc)

> insist that this problem is from Lyme because I have small fiber

> neuropathy.

> But now I have developed a worsening problem in that I am going to the

> bathroom 3-4 times more quantity wise than a normal person. I can hardly

> leave the

> house, it is very disabling and I have bleeding. So far, no sign of

> cancer

> or a tumor through tests and no sign of an infection of any kind and I am

> being referred to a nephrologist (kidney specialist). Diabetes has also

> been

> ruled out although I wonder if this could be due to the pituitary disease

> I

> have that lyme caused. I am very lucky that I have a group of regular

> mainstream doctors here who don't doubt Lyme Disease as a cause of many

> of my health

> problems and they are very respectful about it.

>

> But of course, this could be completely unrelated. Has anyone on either

> of

> these groups had any kidney diseases or problems? I admit I am very

> nervous

> that maybe I have cancer because of the symptoms and how sick I am. And

> my

> grandfather died of kidney cancer that spread to his brain (but this was

> in the

> 50s) and my dad died two years ago of pancreatic cancer.

>

> Thanks for any input. It was worth asking about! I have met a lot of

> other lyme patients who have definite neurological lyme who have

> neurogenic

> bladder. It is exactly what MS patients get and is very frustrating. You

> can

> either lose control (which I don't do thank God) or you can't go at all.

> In my

> case I can't go and have to self-catheterize. Very awful.

>

> Thanks.

>

> in Arizona

>

>

>

[Guest guest]

> Hi , I have an article on the bladder and lyme, it wasn't on

computer,

> but if you e-mail me privately, I will send it snail mail

> hang in there

Connie, Thank you very much. I would love to see this article. I

have a good friend who is a vet in Boston and she said so much is

coming out in the canine literature about Lyme and chronic kidney

disease. I could only find maybe one article in medline searches and

the medical libraries about it. I have access to all of the medical

libraries through a class I am taking. I doubt the nephrologist will

know what to do. I really do not want to take another drug to help

with a problem. I try to do everything natural when I can. I

already drink tons of diluted 100% pure cranberry with good water

every day. I drink no alcohol and only one cup of coffee a day and

its organic. So it is very frustrating. Really I can hardly leave

the house.

I don't wish this type of problem on my worse enemy. Using the

catheter is very difficult and frustrating. I didn't know that so

many MS people have this problem but I guess it is very very common.

But this new problem, which might be kidney disease scares me.

Lyme is a very scary disease, not to be taken lightly, that is for

sure.

Connie, don't be so hard on yourself for feeling scared by things.

But really, don't most people get better? I have been on this list

for five or six years now too and I have seen many people never come

back after getting better, or at least getting to a really good

quality of life. I appreciate it if you can find that article to

send me.

Thank you.

[Guest guest]

Three cheers for Becki and -

Hip Hip,

Hip Hip,

Hip Hip,

HOORAY!!!!!!!!!!!!!!!!!

>

> Hi,

> I don't know if is a very lucky little boy or the antivirals

realy do

> work.

> Friday was the only bad day where he was so sick.The weekend was

spent trying

> to calm down an angry child who couldn't go out and play.Today all

that is

> left is a bit of lingering cough.

> If it wasn't for the fact that they did an actual flu test I would

have

> assumed it was just some 24 hour viral crud.

> Thanks for all the prayers and well wishes,they worked!

> Love and Hugs

> Becki and 7 systemic

>

>

>

[Guest guest]

-Becki,

Im so relieved to read that is feeling better and getting back

to normal. Has there been any mention of taking him off enberl

because of all the infections and trying something else. Or are

these infections deemed acceptable??? What critera do they use to

decide weather a drug is causing toooo many infections???

hugs Helen and (8,systemic)

-- In , Arthurnator@... wrote:

>

> Hi,

> I don't know if is a very lucky little boy or the antivirals

realy do

> work.

> Friday was the only bad day where he was so sick.The weekend was

spent trying

> to calm down an angry child who couldn't go out and play.Today all

that is

> left is a bit of lingering cough.

> If it wasn't for the fact that they did an actual flu test I would

have

> assumed it was just some 24 hour viral crud.

> Thanks for all the prayers and well wishes,they worked!

> Love and Hugs

> Becki and 7 systemic

>

>

>

[Guest guest]

In a message dated 2/13/06 6:54:32 PM Central Standard Time,

hburger64@... writes:

> Has there been any mention of taking him off enberl

> because of all the infections and trying something else. Or are

> these infections deemed acceptable??? What critera do they use to

> decide weather a drug is causing toooo many infections???

>

>

Hi Helen,

No mention of taking him off the Enbrel.The worrisome part is he is

now 82 lbs and should be taking 30mg of Enbrel instead of 25mg,but their

therory is the 25mg works like a charm.

The infections are acceptable and are not considered serious unless it

requires hospitilization.I don't know the criteria for what they consider

chronic

infections which does not have.

Acoarding to Cinci and Vanderbilt I could have given MTX and Enbrel on Sunday

because he was feeling so much better but I decided to just skip them because

his arthritis is in such great control.

The chondritis was realy bothering him this morning or he was realy trying to

play hookie.He would have been a wild child here at home.

I am going to ask about a big steroid shot in his butt when we see Dr.Lovell

on the 27th.

Love and hugs

Becki and 7 systemic

[Guest guest]

-Becki,

Thanks for the info, I hope i was not being too nosey,its just that

I always wonder about these things ))Enbrel has been a miracle for

Mr , im glad its not becoming an issue for him.

82lbs WOW!!!! he sounds like he is all boy, Nick's a year older and

36lbs lighter. Last weigh in Nick was only 46lbs!!!

I hope you guys are going to Atlanta, I cant wait to meet you....

hugs Helen and (8,systemic)

-- In , Arthurnator@... wrote:

>

> In a message dated 2/13/06 6:54:32 PM Central Standard Time,

> hburger64@... writes:

>

>

> > Has there been any mention of taking him off enberl

> > because of all the infections and trying something else. Or are

> > these infections deemed acceptable??? What critera do they use

to

> > decide weather a drug is causing toooo many infections???

> >

> >

> Hi Helen,

> No mention of taking him off the Enbrel.The worrisome

part is he is

> now 82 lbs and should be taking 30mg of Enbrel instead of 25mg,but

their

> therory is the 25mg works like a charm.

> The infections are acceptable and are not considered serious

unless it

> requires hospitilization.I don't know the criteria for what they

consider chronic

> infections which does not have.

> Acoarding to Cinci and Vanderbilt I could have given MTX and

Enbrel on Sunday

> because he was feeling so much better but I decided to just skip

them because

> his arthritis is in such great control.

> The chondritis was realy bothering him this morning or he was

realy trying to

> play hookie.He would have been a wild child here at home.

> I am going to ask about a big steroid shot in his butt when we see

Dr.Lovell

> on the 27th.

> Love and hugs

> Becki and 7 systemic

>

>

>

[Guest guest]

Sorry guys, it gets so confusing around here. My last

one was actually sopposed to be directed to .

Gee, you'd think I was on pain meds!

[Guest guest]

Thanks for your reply. I did take her to the ER last night and they took a

bunch of blood work, urine, etc. Everything came back normal, and today her

fever is down to almost normal, eyes not nearly as red, so when I took her to

her reg. ped. to f/u, she looked healthy as an ox! But now, 3 hours later,

she's back with a slowly escalating fever (not nearly as hight though), and her

eyes are back to bright red again! I don't get it! They said they think it's

just viral, but why would it ebb and flow every day?

(No light sensitivity though)

,

,

Ummmm Have you called the Dr? Is she sensitive to light as well? I would

carry her in

had Mennigitis which acted like that. Not the classic symtoms but the

painful neck and sensitive skin and the eyes. Would call for a trip to the ER. A

flare or Mennigitis though

Robbin

________________________________________________________________________

Check out AOL.com today. Breaking news, video search, pictures, email and IM.

All on demand. Always Free.

[Guest guest]

My insurance pays for the visits because it is a treatment by my general practitioner. They so far have paid for two treatments per month. I am not sure what the basic charge is, it may be different with who ever is doing the treatment. Sandy Verticelli <dusty.com@...> wrote: One more question Does insurance pay for these visits If not what is the cost per visit ? Thank You, Sandy ~ I am seeing my regular general practitioner. He has been getting on a real health kick in the past couple of years. I am just so lucky to have him. I do beleive that laser acupuncture would help in the same way regular acupuncture works. The difference is laser is using an infrared

laser pen as oppossed to needles. He treats many people for many different things, he started treating my fatigue first with the laser, however it took about three visits before my body started to respond. In the mean time, I was changing my diet and doing herbal cleanses. When I first started, he was also treating a family who was exposed to high levels of carbon monoxide, he stated that their symptoms were identicle to mine. We were all toxic. He also is treating my lower back pain with the laser. My problem with extreme lower back pain is really my bladder meridian. I have IC and I am not treating it with the reccommended pharmacuticles. Also, my juice diets somedays irritate my IC, when that happens my lower back is so sore, I can't walk. I never would have thought that my IC could effect my back. Another thing, my explant scars are under my breast, I have two very red spots on the scar, which he tells me

are my small intestine meridians. They got cut when I had explant. He is treating them with the laser also. The pain inside the scar is also getting better since starting the treatment. I hope this helps, . -

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

,

You have to stay on the Miralx then. Once you find something that works, you

have to stay with it. It's too scary with the Hirschrpungs. Ask a

nutritionist if there's anyway you can make up the fat that he's pooping out.

I'm sorry. Hirschprungs takes priority over everything. I had one mom who let

her child run around the house naked and she chased him with a peri squirt

bottle and cleaned him as soon as he pooped. Have you ever tried Critic aide

ointment? I had some luck with that. it will stick to denuded skin. Apply it,

whipe away with a wet paper towel and reapply...Never try to get it off

completely. Every day sit him in the tub with a couple of inches of water, (now

you can do the blow up pools outside) and just let him run wild and naked as

much as possible to dry out his poor bottom. Good luck. We also used mineral

oil, but it also has the fat absorption issue.....Keep doing what works. Get a

nutritionist at the hospital to help you with the

nuttition part. dian kane

<kimlentz@...> wrote:

Hi Dian, thanks for the reply. My poor little guy has had so many

severe diaper rashes that he is petrified of pooping. In fact, since

I stopped the Miralax the other night after everyone freaked me out

about it, he now has a horrible diaper rash (skin is broken down and

bleeding) because he hasn't emptied. The nice thing about the Miralax

is that it made his BM's soft such that he had no pain passing them

and usually did so at night while he was sleeping. If he feels the

urge to poop during the day he fights it. The thing I worry about

with the pineapple juice is that he is soooo sensitive to citrus. If

he has just 4 oz of orange juice it causes his bottom to break out.

I was hoping that the pear nectar would work and not be so acidic.

Any ideas on that? Have you heard bad things about Miralax too? My

son's GI put us on it a year ago and honestly it has been the best

thing to ever happen to us. Prior to the Miralax my son was

constantly in pain and rarely had skin on his bottom. This is common

for kids with Hirschsprung's, and most the kids I know are on a

regimine of daily Miralax or similar. But, now I'm afraid of it after

everyone was discussing how bad it is. I know for a fact that the

Miralax has not caused my son's apraxia though because he started it

well after his problems began. I just don't know what to do

now...when he is in constant pain he can't learn because he is

constantly focused on the pain...I fear I have no alternative to

Miralax...Sigh!

Any advise on the rate I'm giving supplements?

Thanks again!

Hi and other

Apraxia Mommies and Daddies! I started my son,

> who will be 4 July 27th, on supplements the middle of May (about a

> month ago). I immediately started with 2 EFA and 1 EPA and 400 IU

> Vit E in the morning after breakfast. Then this past Sunday I added

> a second dose of 2 EFA and 1 EPA and 200 IU Vit E after dinner. I

> also started probiotics Monday as well as 125 mg Magnesium. I'm

> trying to get him off the Miralax since everyone seems to think it

is

> so bad. He has been on it a year for bowel issues due to

> Hirschsprung's Disease. Today I bought some pear and papaya nectars

> and I'm trying that. If it doesn't work I will have to go back to

the

> Miralax I'm afraid.

>

> So my question is...am I going too fast with these supplements

(fish

> oil and vit E in particular)? Should I back track a little and

> reduce the dosing? I have recently seen posts that suggest waiting

6

> months and just adding one capsule at a time, so now I'm confused.

I

> sure don't want to hurt him by adding these things too fast. Since

I

> added the second dose after dinner, he hasn't been able to fall

> asleep until very late. I'm hoping that will resolve itself when

his

> system adjusts, but if I should reduce the supplements and go

slower

> then I will do that. Please advise!!!

>

> Thanks so much!

>

>

>

>

>

>

>

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

> Boardwalk for $500? In 2007? Ha!

> Play Monopoly Here and Now (it's updated for today's economy) at

Games.

>

>