Re: Digest Number 172

June 24, 1999

<<I have just been diagnoised with PA by a RA. He is trying nsaids first. I am

now taking naprelan(naproxen sodium). Did anyone else start out this way?

<snip> After reading about the methotrexate that some people have tried, it

sounds like there are a lot of side effects. Jim >>

Hi Jim,

I started out taking Lodine only for about a month to no effect. I was very

concerned about potential side effects of MTX for many reasons, and initially

was more than happy to not take the second-line therapy. After that month,

however, with increasing pain, stiffness, fatigue and general crabbiness

(LOL), I ran back to that doc who suggested MTX and I agreed immediately, but

not without trepidation. :-) My side effects have not been awful, some

diarrhea, mindlessness and fatigue, but they have been actually getting less

severe as time goes on. I really think that MTX affects different people in

different ways, and the its effect on you may change over time. All I know

for sure is, it's now helping my pain quite a lot (the last few days seem to

be a little more painful -- I haven't quite figured out why yet). It's a

process to figure out what will work and what doesn't. I weighed the known

cost of *not* taking it (being miserable, in pain) versus the potential

benefit to be gained, and the answer was relatively simple for me. We take

calculated risks every day when we get behind the wheels of our cars or walk

down the street -- this calculated risk is just another one we need to learn

about and make a reasonably educated decision about. Hope this helps.

Patty

February 27, 2000

Hi everyone!

Well Gretchen everytime I fall its forward. I am like some of you on the

list I have badly scarred knees.

CSCluv**

http://community.webtv.net/cat926/doc

May 1, 2000

Everyone,

You are so special..I don't know Tami as I've only been n this ist a short

time. However, I'm sure that she absolutely was inspired by having Rashelle

come along with all of the many well wishes, flowers, songs and balloons.

Tami must have been so scared. But she made it through and is probably be

home with her family right now.

Where are there pictures of her? I'd love to " meet " her so I can put a face

with the name.

Well I am getting ready for my vacation..leave on Wed. for the Bahamas..I am

hoping to do life lift 2 times per day but will honestly be greatful for

once..

I noticed with the survey that some people do it at work. How is that

possible? You must not do it with the loud pah's!! Maybe I can do it on the

beach or casino..I suppose I can try to be inconspicuous and no noise! I was

very very bad yesterday with eating and starting our vacation with a few

celebritory drinks with our travelmates and am sure suffering today.

ttyl and thanks for the good news about Tami..

Ellen

I

May 2, 2000

Dear Ellen...could you squeeze me into your suitcase???

Love and pahhhhhhhhhhhhhhhhhhhhhhhh (shhhhhhhhhhhhhhhhhhh)

Libby :>)

> Everyone,

> You are so special..I don't know Tami as I've only been n this ist

a short

> time. However, I'm sure that she absolutely was inspired by having

Rashelle

> come along with all of the many well wishes, flowers, songs and

balloons.

>

> Tami must have been so scared. But she made it through and is

probably be

> home with her family right now.

>

> Where are there pictures of her? I'd love to " meet " her so I can

put a face

> with the name.

>

> Well I am getting ready for my vacation..leave on Wed. for the

Bahamas..I am

> hoping to do life lift 2 times per day but will honestly be

greatful for

> once..

> I noticed with the survey that some people do it at work. How is

that

> possible? You must not do it with the loud pah's!! Maybe I can do

it on the

> beach or casino..I suppose I can try to be inconspicuous and no

noise! I was

> very very bad yesterday with eating and starting our vacation with

a few

> celebritory drinks with our travelmates and am sure suffering

today.

>

> ttyl and thanks for the good news about Tami..

>

> Ellen

>

> I

May 15, 2000

In a message dated 5/15/00 5:47:00 AM Central Daylight Time,

egroups writes:

<< I'll post this to the list in case there are others who don't know how to

" highlight " or " copy & paste " to respond to their email. >>

WOW, Judy............I did it !!! Thank you for your help. Now.........how

do I print just the stuff I highlight? I had to print 9 sheets of digest

before I could save your instructions !!!! All right, you guys........you

can stop laughing about my computer skills !!!

Margaret

May 15, 2000

In a message dated 5/15/100 1:20:46 PM EST, mfroof@... writes:

<< Now.........how

do I print just the stuff I highlight? >>

Hi Margaret,

I don't know about the digest setting. When I want to print my mail I

highlight it and hit " reply " then I clean it up by putting my cursor at these

marks >> & << and " backspacing " over them. I also get rid of who sent it,

which is at the top of this email, then I hit " print " which is at the top of

your screen. Now when it prints it will not print out all the transmission

garbage and will save space and paper. If there are portions of several posts

you would like to add to one just " copy & paste " each line you want to add,

make your comment if you like, then click on the - on the upper right hand of

the email and it will minimize and sit on your desktop. Then you can look at

other posts and " copy " and click on the email you just minimized and hit

" restore " and put your cursor where you want it and click on " paste " and

there you are! If anyone wants to add anything here or correct me, feel

free!!

Have fun!

Judy

October 15, 2000

Yesterday I used my beck blood elec. unit in a different way. I have a

subsebaceous cyst in the right cheek of my face. I just put one

electrode on one side of it and the other electrode on the other side.

Well, it made my eye react--that is it made flashes of light appear in

the right eye. Also even though the electrodes had on their cotton

sleeves, it seemed hot enough that I worried about burns (though there

were none). I still did use it for a few minutes in this fashion,

moving the electrodes after only a 2 or 3 seconds in the same spot. I

got a metallic taste. I have bridges, both upper and lower, on that

side. I was worried so I quit really soon. Question--does anyone know

if this procedure is safe? It sure cleared my sinuses and definitely

brought the swelling to nearly nothing for several hours. This am the

swelling is here again though not as severe, I don't think. Do you

think alpha lipoic acid will get rid of the metals? It was like a magic

bullet for a while there and I would like to do it again if it won't

hurt anything else too much. pj

egroups wrote:

>

> There is 1 message in this issue.

>

> Topics in this digest:

>

> 1. Re: Miracle Sponge Wipes Out Killer Mold -

> From: " Duncan Crow " <duncancrow@...>

>

> ________________________________________________________________________

>

> Message: 1

> Date: Sat, 14 Oct 2000 08:50:43 -0700

> From: " Duncan Crow " <duncancrow@...>

> Subject: Re: Miracle Sponge Wipes Out Killer Mold -

>

> It's nice there are options, but personally I'd use an IV of silver every

> single day before I'd help promote the efforts of the big pharmacy machine.

>

> A 50 yr. old diver friend of mine who contracted a blood-borne fungus in the

> Pacific Ocean got rid of it through blood electrification and drinking

> poor-quality colloid she made from tap water. The fungus was resulting in

> the eruption of a large sore in every place she got a nick in her skin. it

> took more than two months before she was symptom-free.

>

> ciao

>

> Duncan

>

> ________________________________________________________________________

October 15, 2000

Hi Henry

you can use the blood purifier without harm to kill the bacteria

in the cyst...the current flow will only be from one electrode to the

other...Turn back the level control to a comfortable level as different

areas have different levels of conduction due to moisture in the tissue.

when you reach the comfort level or below it you will have little chance

of burning the skin..This is what the level control is for...also use the 100 hz

setting will be more comfortable as it is a faster switching rate.

look at some new devices found at http://www.rtvc-2000.com/purifier.htm

Henry wrote:

> Yesterday I used my beck blood elec. unit in a different way. I have a

> subsebaceous cyst in the right cheek of my face. I just put one

> electrode on one side of it and the other electrode on the other side.

> Well, it made my eye react--that is it made flashes of light appear in

> the right eye. Also even though the electrodes had on their cotton

> sleeves, it seemed hot enough that I worried about burns (though there

> were none). I still did use it for a few minutes in this fashion,

> moving the electrodes after only a 2 or 3 seconds in the same spot. I

> got a metallic taste. I have bridges, both upper and lower, on that

> side. I was worried so I quit really soon. Question--does anyone know

> if this procedure is safe? It sure cleared my sinuses and definitely

> brought the swelling to nearly nothing for several hours. This am the

> swelling is here again though not as severe, I don't think. Do you

> think alpha lipoic acid will get rid of the metals? It was like a magic

> bullet for a while there and I would like to do it again if it won't

> hurt anything else too much. pj

>

> egroups wrote:

> >

> > There is 1 message in this issue.

> >

> > Topics in this digest:

> >

> > 1. Re: Miracle Sponge Wipes Out Killer Mold -

> > From: " Duncan Crow " <duncancrow@...>

> >

> > ________________________________________________________________________

> >

> > Message: 1

> > Date: Sat, 14 Oct 2000 08:50:43 -0700

> > From: " Duncan Crow " <duncancrow@...>

> > Subject: Re: Miracle Sponge Wipes Out Killer Mold -

> >

> > It's nice there are options, but personally I'd use an IV of silver every

> > single day before I'd help promote the efforts of the big pharmacy machine.

> >

> > A 50 yr. old diver friend of mine who contracted a blood-borne fungus in the

> > Pacific Ocean got rid of it through blood electrification and drinking

> > poor-quality colloid she made from tap water. The fungus was resulting in

> > the eruption of a large sore in every place she got a nick in her skin. it

> > took more than two months before she was symptom-free.

> >

> > ciao

> >

> > Duncan

> >

> > ________________________________________________________________________

>

November 18, 2003

Dear all,

I havent' visited this website for a while and am amazed at the growth! My

daughter is 20 & has BPES. When she was born there was no Family

network, no Internet...all I could do was go to the University's medical

library. The syndrome was called Komoto's syndrome back then ('83). and there

was no Genome to identify the chromosome. We have no history in our family that

we know of...so we felt guilty... " what did we do? "

It is critical that the surgeon is an oculoplastic surgeon because the bottom

line has to be preserving the vision. You don't want to get consumed with

cosmetic effect in that vision is at risk. We were advised to try to wait for

surgery if possible for growth and development of the skull and facial features

unless vision was compromised. She had corners done at 4.5yrs; slings a few

months later; revisions at 16 & 19. Persistant problem is the gap between the

lower lid & the globe of the eye...redness and dust.

's first slings came from her leg (fascia); but newer ones are Gortex.

Insurance companies respond well to articles about the syndrome (because

they've never heard of it either)...and " visual field " studies which prove that

the child's visual field isn't normal...so surgery is justified. But they

probably don't pay for extensive cosmetic things like brow implants and cheek

lifts (to correct the flat facial features).

I'll ask if I can post her picture...She looks like so many that are in

the photo section. She is a healthy vibrant college junior studying

photojournalism (getting A's)...she has had saddness over " looking different " in

the past...I wish I could have saved her from that...but she's a very resilient

gal who knows her own mind...for that I am grateful.

Best wishes to all...

Cheri Vahl, Iowa City, Iowa USA

blepharophimosis Digest Number 172

July 8, 2004

I'm sorry I didn't respond. I just recently had surgery on the L5-s1. I had

it st patricks day. But I've had my plate real full recently. I've

developed shin splints. I've developed diabetes. I've also developed

depression issues. I know the diabetes broke this camels back.

But the surgery has been the easiest surgery of all I've had to deal with.

I woke up with a pca pump. I used the as needed button a few times, not

often. Then When I got up moving the next day it was to the pills, and I

took them for fear of pain. But realized I didn't need them. I haven't

taken the pain med I took for pain for my back since. I however do still

take some pain medication, but I also have fibromyalgia, and RSD. But I

have more than cut my doses in half. So that even has been a success. And

I still have 3 more herniations. Now my surgeon is after those. Mainly

because of the headaches associated with them.

Good luck

Teri

July 8, 2004