Re: (unknown)

[Guest guest]

Thanks, Al. You're one of the good guys, and I appreciate your

sweetness & friendship.

Love...

tess

[Guest guest]

That¹s to bad Tess. So many of us are sun sensitive due to our meds. It¹s

just a vicious cycle. Does your meds cause you to sun flare or have you

always been sensitive to the sun? I used to break out in a rash from the

sun especially on the backs of my hands. It would itch and have raised

bumps. I believe it was med related, but that was before the internet so I

didn¹t know much.

I¹m glad you¹re careful with your feet and toes. I know what can happen

with just a small sore.

Do you like to read? Maybe a good book would be entertaining?

Hugs,

a

> Hi a...I get sun flares very easily, sometimes within 15 - 20

> minutes. It is sunny & bright & beautiful here...I always keep my

> blinds open (I'm on the 2nd floor).

>

> This 'falling into a hole' emotionally has been happening too much

> lately. Really wears me down.

>

> Since I have diabetes I watch my feet/toes. This infection just seemed

> to pop up from no where.

>

> Love....

>

> tess

>

>

>

[Guest guest]

Hi a...I've had problems with the sun for about 11 years...way

before I was on meds. I get sick to my stomach followed by diarrhea,

rashes, and swollen joints.

Love...

Tess

[Guest guest]

<PRE>hi tess, you called them sun flares. sometimes as soon as i go outside, my

eyesight gets fuzzy. then i just feel very dizzy and kinda out of it. i

remember especially over 4th of july weekend i was feeling just like you are

describing. i just sat inside and cried watching all the families celebrate.

does your sun flares happen often. mine only seem to be in the summer. when

the sun is brightest. i also feel i am just watching life go by. i just try

to take it one day at a time. try to keep myself busy at home. like today my

project is to clean the furnace. not fun, but needs to be done. especially

with the new kitty.(she also helps make me smile) time goes by much faster

and i feel needed. yesterday i baked oatmeal and raisin cookies for my

friends birthday. hang in there tess., we love you. kathy in il

[Guest guest]

Tess -

Don't apologize! You can't help the way you feel -

you said before you have some sort of chemical

problem? It's out of your control - hopefully your

doctor can help you find some way to help you through

these cycles or better yet to stop them. We are here

for you - I am so sorry that you are feeling this way

again. Hugs to you, kiddo, hang in there.

Kathe in CA

__________________________________________________

- We Remember

9-11: A tribute to the more than 3,000 lives lost

http://dir.remember./tribute

[Guest guest]

Thanks, Kathe. I see my Dr. tomorrow at 10.

Love....

Tess

[Guest guest]

I!!!! And Amen little sister goddess!

Vicki

[Guest guest]

I!!!!

(unknown)

> All you hot mama's out there in wheelchairs say " I " !!!!!!! !

> we have to represent!!! lol.....k....im in a weird mood.....I guess I

> needed to share my weird mood w/ya. But yeah, you heard me. I!!!!!!!!!!!

>

>

>

>

[Guest guest]

vicki---we need to chat

[Guest guest]

Hi gina;

Have you emailed Dr G re your concerns? I also wonder why he is on two

separate SSRI's. Has Dr G discussed the anti-fungal and when/if that will

start?

Suzanne

From: " azgina2002 " <azgina2002@...>

Reply-

Subject: (unknown)

Date: Sun, 08 Sep 2002 22:22:13 -0000

My son is 9 years old and has been with dr g since June. My son is

currently on valtrex, welbutrin and celexa. He is extremely hyper

now--cannot sit still, cannot focus on work at school and having

behavior problems never seen exhibited before. Before the program we

had him on ritalin and never had any of these problems. How long

before we start seeing results? is this behavior typical?

we all are stuggling!!

gina

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

In a message dated 9/10/2002 10:18:58 PM Central Daylight Time,

pickndaisies2002@... writes:

> vicki---we need to chat

I'm on at vicki_jurneytaylor. IM me at any time.

Vicki

[Guest guest]

Barb,

I'm not sure what I'd do about the blood work, but I felt I should let you

know that if it is not billed the right way for insurance (our pediatrician

billed it under " autism " first), it won't be covered (and it's expensive!).

Dr. Goldberg billed it under code 279.3 (immune dysregulation) and 780.9

(neurocognitive dysfunction) (he put them both on the form). We have Blue

Cross/Blue Shield and when we billed it under the codes Dr. Goldberg used,

it was covered (we sent it through a second time).

Also, if you feel that the Neurospect will probably be covered by your

insurance (ours was), even though it is more expensive, it actually might

not cost you (out of pocket) that much more to go to Santa ***(I am

sitting here wondering if anyone on the list can let us know if the Santa

price might have been " bumped down " a notch after being sent through

insurance (you know... sometimes they bring it down to the " allowed amount "

for insurance companies).

I feel for you... hate these dilemmas... as if we didn't have enough to

worry about already. Good luck. I hope you see the kind of success we are

seeing and more. The trip was absolutely worth it. It has changed my son's

life completely. We're not " there " yet (recovered), but moving that

direction!

Caroline

[Guest guest]

,

It is harder to treat older children. It takes more time and patience. You

have to give each drug a decent trial before you switch. Just keep Dr. G

updated and be patient. My daughter is no longer hyperactive but it took over

two years to be able to say that! It was difficult but well worth it. Kathy

-NNY

[Guest guest]

I knnow what you mean about those sun flares..i get them too...used to seek

out the sun; but now I seek out the shade..work in the pole barn instead of

outside when I can..evenings and ealry mornings are the best....II now wear

hats most days...marge

Re: [ ] (unknown)

> <PRE>hi tess, you called them sun flares. sometimes as soon as i go

outside, my

> eyesight gets fuzzy. then i just feel very dizzy and kinda out of it. i

> remember especially over 4th of july weekend i was feeling just like you

are

> describing. i just sat inside and cried watching all the families

celebrate.

> does your sun flares happen often. mine only seem to be in the summer.

when

> the sun is brightest. i also feel i am just watching life go by. i just

try

> to take it one day at a time. try to keep myself busy at home. like today

my

> project is to clean the furnace. not fun, but needs to be done. especially

> with the new kitty.(she also helps make me smile) time goes by much

faster

> and i feel needed. yesterday i baked oatmeal and raisin cookies for my

> friends birthday. hang in there tess., we love you. kathy in il

>

>

>

[Guest guest]

your son possibly going through " die-off " reaction, like mine. mine lasted

for one and a half weeks. even had to keep him out of school. the other

thing is that possibly the meds are not reacting well to your son's

particular body chemistry. talk to the dr about this, as i have had to

change antivirals several times already.

[Guest guest]

Don't worry about being down or negative..We all go through that..That's what we are here for to share.vent.and share!

[Guest guest]

I gave myself the shots in my leg..I didn't like doing it but I did it anyway and also disposed of the syringe ASAP..

[Guest guest]

Larry-

If I recall correctly, I think Jake is affected in his knee? I don't know if he has a contracture (can't straighten his leg), but I'd ask if there are specific exercises he should be doing, or if physical therapy is recommended. I'd want to know what the Dr sees as the progression of treatment -- what he'll start off with, what results he expects to see within what time span, and if it isn't working, what he'd want to try then. If you're worried about a specific possibility or think there's something Jake should try, try to get the Dr's attitude about that. Make sure you feel comfortable with his philosophy of treatment. You might want to ask if he has any recommendations regarding vitamin supplements, flu shots, and immunizations. Our rheumy always gives me info about upcoming Arthritis Foundation events and support group meetings, etc. If Jake's involved in any sports or activities, you might want to ask about continuation with them -- whether it's okay or activities need to be modified at all. Find out about circumstances when you should call the dr, e.g. medication side effects or serious flares. I think you mostly need to get a feel for what the dr's approach is going to be. Is he receptive to questions and willing to talk about your concerns? Does he believe in aggressive treatment? When you're happy with the Dr., it makes life so much easier; it really puts your mind at ease. Good luck. Let us know how it goes.

Diane (, 3, pauci)

[Guest guest]

Larry-

One more thing . . . I assume Jake had blood tests done. Have the dr. go over the results with you and explain anything you don't understand. What's his sed rate? Is he RF positive? ANA positive? White blood cells? Maybe you already went over this with the pediatrician?

Diane (, 3, pauci)

[Guest guest]

That was cute!

[Guest guest]

In a message dated 9/27/02 1:29:16 PM Eastern Daylight Time,

rebecca81r@... writes:

> I erased all the e-mails. I didn't bother looking at

> them. Please hope that I'll get better by tonight, I

> have a chat to do w/in school. I had a fever all

> morning and have been sleeping all morning. Trying to

> eat some grapes and bannanna, to see if it'll stay

> down along with the sprite that has stayed douwn.

>

>

,

My mother used to give us TONS of Pepsi (had to be Pepsi, not Coke) when

we had fevers. We used to laugh and laugh about it, but I've since met two

other people who swear by it....LOL

Good luck and I hope you feel better!!

Donna

[Guest guest]

Hi Sue

Just like you my doctor in the UK said it was all in my head and I suffered mentally and physically for 7 years before being correctly diagnosed. Throughout these 7 years, I've had 3 manometry and PH tests and I don't find them too distressing. Uncomfortable yes but definitely not distressing - it just feels like you need to sneeze to remove the object from up your nose. Please don't worry about it - the endoscopy was far, far worse.

Hope you find a treatment to suit you soon.

Take care

Lynn in South Yorkshire, UK

[Guest guest]

Hi Sue....

I also am new and will be at Northwestern in Chicago on Monday for a manometry and evaluation. (Has anyone doctored there?) I believe I've had A for a long period of time. What finally scared me was aspirating food during the night and having to cough it out of my lungs every morning. Along with this I have stuffy nose problems. Has that happened to you prior to getting pneumonia. Either I can't eat or can't breathe and am definitely a mouth breather because my nose is always stuffed. Also I have breathelessness and a hoarse voice for much of the time. I am dreading Monday and the tests I will have....but.....

I have a niece and nephew who are MD's and they are pushing me to have treatment. They tell me aspiration pneumonia could lead to chronic lung disease. So I believe you are on the right tract and should follow through on the A diagnosis. Good Luck.....Donna in Northern Illinois

(unknown)

Hello everyone,I'm new to this list and am so happy I've found you all. From reading a bit of the archives I feel like I've finally found people who can understand what I've been going through the last number of years. I'm sure my story will be familiar to alot of you.About 10 years ago I began having difficulty swallowing. As I swallowed food, occassionally it would become "stuck" and there would be a bit of pain. My Grandmother had had an esophageal dilation about 10 years before my pain started and my family doctor just wrote it off as my having a narrow esophagus like my grandmother. The family doctor said to wait until the pain was too much for me to take anymore and he would send me to someone at that time to do a dilation. It made sense and so I waited.Last August 2001 I came down with yet another bronchial infection and went back to the family doctor. He asked me why I get so many lung infections, and pneumonia about once a year at least. I told him I didn't know...he was the doctor, and I was getting sick of being sick. I also mentioned that the difficulty swallowing has gotten to the point where I've lost 50 lbs in a years time(he said I need to lose the weight anyway so why was I complaining, which is true, but now I'm almost too thin). I also mentioned that the pain when swallowing felt like someone was ripping apart my chest from the inside out. This doctor said I must be stressed (which I don't think I was) and he perscribed more antibiotics for the lung infection and wheezing.In October 2001 I was worse and he said it must be in my head (the pain swallowing) and he sent me to a pshyciatrist. My lungs where still wheezing and he gave me a perscription for more antibiotics.From that time until July I could not even tell you how many times I went back to this doctor, who everyone in my family swore by. He said that it was all just stress related and I must have low immunities - that is why I kept getting infections and pneumonia. During these months I'd also been seen by a very respected pshyciatrist who said it wasn't in my head and except for being depressed because I've been feeling ill for so long without any answers (or anyone believing me it seemed)there was no reason for me to see him. I'd also had the following tests during this time, all of which were negative: EEG, MRI, Chest xrays (many), so much blood work that I'd keep a family of vampires happy for years, 2 upper GIs, and a barium swallow. During the barium swallow I couldn't swallow the barium because of the pain and actually drew blood in my palms from pressing my fingernails into my hands trying to divert the pain. The doctor running the test said that there was nothing wrong, everything was fine.Finally I've gotten to the point that I can't take this anymore at all. In August I called my insurance provider (an HMO) and told them what was happening and that my doctor wouldn't refer me to anyone, but that I NEEDED help. They were actually wonderful and got me in to see Dr Trey at Beth Israel Deaconness Hospital in Boston, MA, USA. Dr Trey has been great and knew right away what the problem was - Achalasia. He scheduled an endoscopy which looked fairly normal, and now I'm to have the manometry & 24 hr PH study on October 14. If the results are as he suspects then he suggests surgery. I hate the thought of surgery, but after reading this list I think it is definately worth it.At this point I have severe pain everytime I swallow. It feels like when I was younger and swallowed an ice cube, before it melted and then it slides down. I've also said that it feels like someone is using a ribspreadder from the inside out. I'm nauseous 24/7. If I bend over even a 1/4 then I get acid or stomach contents in my mouth. When I then stand back up straight I'll go through a series of small rapid burps...those also feel like they are ripping my chest apart. I get this same feeling when I go up stairs or run. I've found that I can swallow those liquid food drinks like Boost or Slim-Fast shakes, but I have to take sips...I've been living on these and thin soups mostly for the last few months. I can't sleep and if I do sleep once I move at all then I wake up with pain and burping. I'm tired all the time and feel really fatigued. Alot of times it feels like I can't even swallow saliva, like it doesn't go down. I haven't been to a restaurant in a year or so, it is always take-out. I also don't eat around anyone except for my husband because it doesn't look too good when you have food stuck and you are pounding on your chest to make it go down. There are times that I feel like I'm drowning. I also have lost alot of my voice which is now rough and gravely. Lately I get short of breath when running (which I have to do for work).Anyway, that is what I've been going through and I'm glad to know that I'm not alone. I do have a couple of questions also. First, when I scheduled the manometry & 24 hr PH study the receptionist said it was very uncomfortable and I wondered what other's have experienced when having this proceedure. Second, has anyone else lost their voice and/or had difficulty breathing when running or during other activities? Third has anyone used Beth Israel Deaconness Hospital or Dr Trey for the surgery to correct this? He comes very highly recommended and I really like him, but of course want to have the best care.Sorry that this is so long, thanks so much for reading this through to the end.Sue in S.E. Massachusetts, USA

[Guest guest]

Lynn...so happy to hear about your manometry experience. I'm having one Monday and your note to Sue encourages me. Donna in Northern Illinois

Re: (unknown)

Hi Sue Just like you my doctor in the UK said it was all in my head and I suffered mentally and physically for 7 years before being correctly diagnosed. Throughout these 7 years, I've had 3 manometry and PH tests and I don't find them too distressing. Uncomfortable yes but definitely not distressing - it just feels like you need to sneeze to remove the object from up your nose. Please don't worry about it - the endoscopy was far, far worse. Hope you find a treatment to suit you soon. Take care Lynn in South Yorkshire, UK

[Guest guest]

Donna

Glad I could offer some comfort for your forthcoming test. I've had 3 done now and I don't fear them at all - yet I fear the endoscopy and I've had 7 of them. Infact, I would go as far as to say I would want to be asleep for anymore - what a baby eh?

Good luck and keep me posted on the results.

Take care

Lynn (UK)