SS

[Guest guest]

Allayne -

I wish you good luck. Do not let them get you down. Things always work out

SOMEHOW -

Take good care of yourself now and try to keep your chin up, remember what

Gillian says about the tower of Pisa - it's true! they are all slightly off

balance and have no clue about this lousy disease - We all understand how

much it hurts, how hard it is to work - Keep fighting for us!!!

[Guest guest]

Hello---I have applied for disability twice. The first was very hard to recieve for I was still working. The second time I applied I got in 7 months. A few suggestions I would like to give are: 1) When you are sent to one of there doctors go in no matter how you feel that day as if it was your worst painful day.(there is no way any doctor can really no our pain level---we all have different tolerants) anyway another is ask for an aprox. time each process should take then if you haven't heard from them call them yourself...you have the right to know at what stage your case is at. Get names numbers and etc. when talking. Log the dates and such I just found it helpful. Each state is different and some take a real long time...go into this knowing that and as fustrating as it may seem try to keep a Good attitude about it all. Good luck and I hope it goes quickly for you. As you are waiting for your disabilty if you haven't already go and see what you qualify for any assistance. Best wishes. a R.

[ ] SS

I, too, suffer from PA as well as having been diabetic for 22 years, have had 3 sacral and lumbar spinal fusions, suffer from other autoimmune problems, as well as a variety of other problems. I am in the process of applying for disability and would appreciate any tips you could offer. Thank you, .

[Guest guest]

Dear Cyntha,

In addition to what Ann has said below, some are told that while appealing the

ALJ decision, that you should also start the process all over again. File a new

application, something about not being able to bring in any new information when

you appeal the ALJ decision. Now that you have learned what you have, you can

do the original application with all they need to know, people HAVE been

approved on the first application, just not very many.

Continue to appeal the original, but start over, learning from the original, and

also note that you are under a great financial hardship and they can walk the

application thru if you find the right people. Perhaps call the local SS office

and find someone friendly and start with that. If you win the new one, your

benefits will not go back to the old date, only one year from the date you

started the new application, but it is better than nothing and you just might

win the original on appeal, in which case you will receive back benefits.

Also, have you considered filing for SSI for the girls? SSI is not only for

sick adults who do not qualify for SSDI, but also for very ill children to help

with special equipment and/or high medical costs. I know this from experience

as we applied and were approved within a few days for SSI for Gavin ('s

2nd baby boy who was premature and very ill, transferred to All Children's

Hospital at age 2 days and had 7 hours open heart surgery at age 5 days). He

had many problems, partial Di Syndrome and we believe " daddy " was doing

drugs, but lived longer than any of the doctors thought he would, 8 weeks.

Since he was hospitalized all of his life, they only got $30/month since he

never came home, at which time SSA would have decided how much he would have

gotten each month as there was no question that he would have been a very

disabled child. There is an SSA office not far from me, its on the way to

Ethan's day care, which is only a few miles away, but there might be one in

Lititz. If you would like my help in looking into this, please call me, you

have my number or email and I will call you. You need to find a " friend " in SSA

that will help you get the benefits you need and deserve.

I almost wish I could talk to you right now while I am thinking about it, but I

doubt you'd appreciate a phone call after midnight, hehe! This is why I am

writing you such a detailed email, then if I forget what I wanted to call you

for, I can simply read the email and I am also sending it to the group as you

never know who can use what information.

Don't call too early as I get up and take Ethan to day care at 6am and help get

Tony ready for first grade so can take him to school by 8 am. And around

11am I am playing " musical cars " with so that I will have a car to get

Tony from school at 2:30 pm, now that is working full time for H & R Block,

12 hrs a day, 7 days a week, and with only 3 cars (Jess is in school or on

clinicals 7am-3pm, and works 6:30 am-pm) it leaves me without a car, not

that I want to drive, but we cant just leave the boys at home missing school

and I'd rather take Ethan to day care than take care of him all day (Jess is on

AFDC and along with them paying her schooling, they pay the boys day care).

I am afraid to make a dr. appt., like I did for today, as school delays are

almost every other day, like today, so I had to cancel my appt. is

getting a car in the next couple weeks so I will have my car back to myself and

will only have to work around the school's wacky hours while we are having our

wacky weather. Pray that I will make it to the dermatologist next Tues.

afternoon or I will go crazy scratching this rash on my arms (yes mine came back

again, how is yours?). Well, enuf said, please call me ASAP!

Hugs, Michele in Lancaster PA

----- Original Message -----

From: Ann Prow Sent: Thursday, January 30, 2003 12:16 PM

I would get my records and another lawyer. I'd be sure it was an attorney that

totally believed in me and my diagnosis and understood how it has affected my

life. I would then write down (it took me months) everything that has affected

me since Lyme entered your life - even before you knew it was Lyme. I'd give a

copy of that to my attorney with your medical records and ask him/her if he/she

can win an appeal with that. If they say no, I'd look for another attorney until

I found one who would stand up for me.

As for how you should " be " in the courtroom. My attorney gave me some great

advise starting with - don't wear nail polish, he had never seen anyone win a

case with nail polish on - to - no matter how you feel that day, be like it is

one of your bad days. It's OK not to be able to answer the questions! That's how

we are. I couldn't, I just said that right now that answer didn't come to me and

I had hoped that the answer was in the paperwork - after all, that's why we are

there - we cannot think clearly. They wouldn't expect someone in a wheelchair to

get up and walk for them, would they? Another thing that was helpful to me was

testimonies from an employer who saw me struggle to do a job, and others who

helped me to exist - by shopping for me, cooking for me - including my husband.

I firmly believe that one of the most difficult things about Lyme,

Fibromyalgia, CFS etc is that it is one of those " invisible illnesses " since

others just don't see it. No one can truly understand Lyme without going through

it - I doubt I could - but they can empathize and attempt to understand with the

facts on paper and us speaking who we are and how we cannot think clearly. We

need to do what we can to " show " them in the little time we have.

It took me months to write what went on in the 18 years before my diagnosis

and I had to research doctors names, symptoms, and correct my initial writings

many times. It was worth the effort.

[Guest guest]

Hi SS,

My naturopath thinks we should do a challenge, but I'm aware now that that's not

a good idea.

Thanks,

[ ] Digest Number 7727

[Guest guest]

, what is DLS? That's where I can do a Doctors Data hair test without a

doctor?

Thanks,

[ ] Digest Number 7739

[Guest guest]

Direct Lab Services. Yes, unless you live in NYS, in which case you need to go

through a friend or relative who lives in another state.

S S

<tt>

<BR>

, what is DLS?  That's where I can do a Doctors Data hair test without a

doctor?<BR>

<BR>

Thanks,<BR>

<BR>

_______________________________________________

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

The most personalized portal on the Web!

[Guest guest]

,

If you mention this list or autism, they'll give you a discount.

S S

<tt>

<BR>

, what is DLS?  That's where I can do a Doctors Data hair test without a

doctor?<BR>

<BR>

Thanks,<BR>

<BR>

_______________________________________________

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

The most personalized portal on the Web!

[Guest guest]

,

do you know where I can find a non-yeast based selenium?

Thanks,

[Guest guest]

,

Looks like Solgar and Solaray both have one. I've seen both of those brands in

most HFS.

S S

<tt>

,<BR>

do you know where I can find a non-yeast based selenium?<BR>

<BR>

Thanks,<BR>

<BR>

_______________________________________________

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

The most personalized portal on the Web!

[Guest guest]

This is for Vicki and I was looking for Lupus stuff in my " junk "

about antibiotics and came across this.hope it helps someone

cooky

Gang,

I was in this group a few years ago and I check in from time to

time. I did 2 years of AP with not much improvement. Then I found

out I have Lyme Disease, which requires more aggressive abx treatment

as early as possible. (Which I did not get) I have been sick 28

years, misdiagnosed 22 years as Chronic Fatigue Syndrome/ME. I

developed severe dryness in my eyes, nose, mouth and lungs the last 4

years. It became so severe in 2005 that I was mostly housebound the

whole year. I could not cope with the smallest amount of car fumes,

perfume, etc. I had to sleep sitting up as I felt as though my lungs

were closing down. I had to have a humidifier in the room and also

an air filter. I lived on Ventolin to help me breathe. I tested

negative for Sjogrens so far, but have all the symptoms. I honestly

felt like I was dying and hoped it would be soon. My doc had run out

of ideas.

I came across a new, experimental treatment at www.Lymephotos.com

This involves taking large doses of pure salt (not table salt) and

vitamin C. These 2 substances both cross the blood/brain barrier and

actually kill Lyme bacter via osmotic shock. It really works.

I was scared to try it as I thought the salt would make me even

drier. (table salt does) However, my doctor told me that salt

actually causes water to be attracted into the cells and that the

salt & C should help me. With no other options, I tried salt & C and

noticed improvements straight away. I have been on salt & C 34

months and have many fantastic improvements. I have just returned

from a 3 month tour of Canada! (I live in Australia) Prior to salt

& C, my biggest ambition in life was just to cope & to remain

vertical for most of the day! I never thought I would travel. I had

been in a wheelchair and on a walking frame. Since I have been on

salt & C there has been slow but steady improvement in all areas. I

had lots of neurological problems which, my doctor agrees, are

reversing. I am still dry in my mouth, eyes, nose and lungs, but it

is much better. I don't know how well I can get at this stage, but

salt & C is taking me forward when nothing else worked.

For those of you with Sjogren's Syndrome, this is definately worth

trying.

Just my 2 cents worth,

Rosemary Trudeau.