Re: Regarding the Hartford Meeting....yesterday

[Guest guest]

I saw Dr. today for a follow-up visit. He seemed to think that

the meeting went very well, and was very proud of his standing ovation. <G> He

is really not one to boast, so I know it meant a lot to him.

[Guest guest]

In a message dated 2/25/99 4:43:58 PM, Iggy81@... writes:

<< I saw Dr. today for a follow-up visit. He seemed to think

that

the meeting went very well, and was very proud of his standing ovation. <G> He

is really not one to boast, so I know it meant a lot to him.

>>

Hello , I was just wondering if Dr. was taking any more paitents

or if you knew how to contact him. I would absolutely love to get a chance to

see him and get a hold of that new culture test. I don't even know where he is

located. Pleas write back when you can. thank You -Val

[Guest guest]

Sorry that I have been AWOL since the meeting on Wed. Now that you all

know all there is to know about it, I would like to add that Dr.

is my new HERO. He was amazing!!!! I didn't stick around to

hear what the other half had to say because I was exhausted and falling

asleep and had a 2 hour drive to go yet...the room was hot and

packed...too packed for me to find Marleen, the biggest disappointment

of the day for me...but the meeting was worthwhile on so many levels,

especially watching Dr. HERO really lay into Steere and HMO's and any

disbelievers who have come up with terms like " Post Lyme Syndrome " , etc

for us chronic sufferers.

Now onto something else which has had me in an uproar since Wed...

I received my denial papers from SSDI and there are 2 things REALLY

bothering me about them.

Since so many of you have prior experience with this process maybe you

can clue me in...

Thing one-

since I am only 44 (till Tuesday anyway<G>) and since I have 18 years of

education, there is no reason why I can't find some simple task to

perform?????

Are they for real???????

Thing two-

they refuse to use the word LYME. When I got back papers requesting

doctor info they used the term " a disease and depression " for what I am

suffering from. I called them and told them it is not " a disease, but

LYME DISEASE I am suffering from...but when the denied me, again they

stated that I claim I am suffering from " a disease " and depression!

Maybe I am splitting hairs here, guys, I mean after all, no is no...but

why the reluctance to call it what it is???? If I said I had Diabetes,

would they call that " a disease " ? If I had a heart condition, would they

call that " a disease " ? AIDS????? MS???? The connotation of " a disease " ,

to me, makes the condition vague. Lyme is so specific, with such

specific disabilities attached to it-if they took the trouble to learn

anything about those of us who have become totally debilitated by it,

they would know that NO!!!! I am NOT able to perform some simple task!

If I can't even perform the simple task of getting out of bed and facing

a day 6 out of 7 days, how could I go out in this condition and start a

new career?

I am really spooked by this. The inference is, to me, that they just do

not accept the concept of chronic Lyme as an official ailment. Do we

have the ability, in our condition, to convince the world that we are

real????????

Alison

--

[Guest guest]

Dear Marleen,

In response to your note...

> This proves Alison right -- here is a snippet from his written testimony.

> Alison, did he not sound like when he mentioned STEERE'S name -- there

> was with a sneer in his voice?

There was a sneer allright! This man can back up his facts and is not afraid to

do

so! He also did a real good job of not only discrediting Steere, but

substantiating why! He was incredibly well prepared and everytime he said 'these

people aren't crazy, they're sick " , I wanted to jump up and kiss him!

> It is evident that he has no respect for those

> guys and more importantly for us -- isn't afraid to say so.

He made so many important points, about this whole " post lyme syndrome " thing,

and

" lyme fibromyalgia " ...and especially that person with the lesions who was told

she

had MS-then Lyme-then MS again!

> I'm so sorry you got turned down. Please get a lawyer through a good referral.

I went to a consultation yesterday and was SO turned off....so I am going to try

again on Monday. I know I can't sit on this but I would like to go to someone

who

doesn't have a reconsideration all typed up and ready for a signature before he

even meets me and speaks with me! Maybe he is right and I WILL be turned down

again at this level...but if some care was actually put into this document, he

might actually be proved wrong! I realize it is going to up his fee if i have to

go through the entire appeal process and this is nice for him, but in 2 years we

are going to be out on the streets and I KNOW you know what this is all about! I

am not as brave as you are and I don't think I could take this! So...I would

LIKE

to make the reconsideration part of this bogus process be worth something!

>

> I used one immediately and I got it first try and I hadn't even applied yet.

> It was

> well worth the commission he got. If it weren't for him, I still would be in

> the

> denial stage. I don't receive very much because I ran our Plumbing business

> from home for a long time -- but it's better then nothing. It helps defray my

> dog

> & cat food bills and helps make payments to the Vet for all the bills I've run

> up. You can see where my priorities are!

That is what makes you the amazing person you are, Marleen!!!!!!

[Guest guest]

alison7@... writes:

<< I would like to add that Dr. is my new HERO. He was amazing!!!! >>

This proves Alison right -- here is a snippet from his written testimony.

Alison, did he not sound like when he mentioned STEERE'S name -- there

was with a sneer in his voice? It is evident that he has no respect for those

guys and more importantly for us -- isn't afraid to say so.

I'm so sorry you got turned down. Please get a lawyer through a good referral.

I used one immediately and I got it first try and I hadn't even applied yet.

It was

well worth the commission he got. If it weren't for him, I still would be in

the

denial stage. I don't receive very much because I ran our Plumbing business

from home for a long time -- but it's better then nothing. It helps defray my

dog

& cat food bills and helps make payments to the Vet for all the bills I've run

up. You can see where my priorities are!

Marleen

Dr. (partial written statement) to AG Blumenthal 2-24-99

In light of overwhelming scientific evidence the BB persists in patients

despite extensive treatment, insurance companies and some tertiary centers

still

magically proclaim patients cured and in no further need of therapy.

The real need is to find a definite cure for this illness. However, since many

of the tertiary centers are rather occupied in the denial of its existence,

those very institutions which are in a position to find a cure, are not

looking. However in the absence of a definite cure, the very least should be

mandates requiring insurance companies to cover extended treatment for this

often devastating illness. It has already been shown that longer treatment

duration although not necessary curative, may be more effective that shorter

duration.

Insurance companies, their paid consultants, have no ethical, moral, or

scientific basis to deny coverage for these seriously ill patients.

Considering

the foregoing data, anyone who declares a patient cured simply because 4 weeks

of standard antibiotics therapy have been given, or denies the diagnosis of a

Lyme patient simply based on a negative blood test, is sadly misinformed.

Can you see why he received a long standing ovation?

[Guest guest]

Hey!!!! What a great idea!

The question is.......

would they even notice us?????

I spent my last year at work in a scooter....

the principal created a small, locked parking lot (not for me) and

listed the people who were allowed to use it like this-

Alison Schettini

Niles Paleo (a colleague who was on Dialysys who, sadly died earlier

this year while waiting for a

kidney transplant)

Principal

Principal's Secretary

Head of Night School

One AP (rotatable)

One Guidance Counselor (rotatable)

One secretary (rotatable)

One security guard (rotatable)

One custodian (rotatable)

I happened to be the program Chair-in charge of student schedules,

teacher schedules, budget, report cards, transcripts, attendance,

cutting, organization reports, etc (anything else they could dump on me)

It is a VERY important position in the school but a teacher's line.

Someone circled my nake and wrote in big red letters SCHOOL HIERARCHY.

So-my question...did this jackass NOTICE I was in a

scooter??????????????

He wasn't the only one! Many people wanted to know why I never attended

meetings on or above the 6th floor (the elevator went to the 5th) (I was

supposed to attend all meetings in the building)

A letter was sent out asking how come MY office was moved to the 2nd

floor from the 6th (the elevator went to the 5th)

These were my " colleagues " and my " FRIENDS " asking these questions...are

strangers going to notice us????????????

I swear to God I am not as bitter as I sound...just a bit skeptical!

Hugs,

Alison

--

[Guest guest]

Thank you so much for all this advice!

I really can't understand for the life of me why if I went to a

DISABILITY lawyer, I had to learn it from you...but at least I have

friends who are TRUE advocates snd not just people looking for a way to

get the most they possibly can in the way of a fee and I honestly do

appreciate this!

I had called a number I got off the net for SSDI advocacy and they

recommended someone local-and then sent me a letter telling me I had to

make a voluntary dobnatio of 10% of my settlement for the

referral....that's what I call a real advocate!<G>

I already owe the world and I am just beginning! It's not that I have a

problem paying my debts...but giving away money I don't have is a whole

other issue!

Again...thank you!!!!!!!!!

Alison

--

[Guest guest]

alison, as a person who has been thru what you are going thru now let me try

to be of some help......i collect ssd due to Lyme Disease.......i also was

turned down initially and on reconsideration......you must ask for a hearing

file an appeal;. my recomendation to u is to :

A. contact a lawyer who is versed in social security appeals , they can charge

u up to $4000.00 which is paid out of ur back benefits when u recieve them( no

benefits they do not get paid)they are in the newspaper or phonbook.

B. collect as much information and medical papers as u can ( the internet is

wonderfull for this) and send them to ss. include all ur doctors reports(going

back as far as u can......mine is over 12 " thick......include all medical and

phyciatric paperwork........the more the better.....

C. have family members wirte letters concerning ur habits and daily routines

.......how u can no care for ur family , go on vacations or just enjoy the

things that normal healthy people do.

D. call your congressmans office , explain the situation and ask them to help

speed up the process as the wheels turn slowly in ss......my congressmans

office started calling once a week to ss. pushging them for hearing date....as

i was told by ss my appeal could have taken up to 18 months i asked what i was

suppose to live on?

believe me ss does not like a congressman snooping around in there business

breathing down their neck's due to his intervention i never had to have a

hearing ....they had an attorney ask for my latest medical records and this

lawyer from ss approved me due to chronic lyme and lyme related

disabilities.....

E. go to any doctors they ask u to go to and be honest......the shrink they

sent me to said was unemployable during my reconsideration but they still said

i could work.....they also sent me to job counselor from the us department of

labor......when she asked me what i could do i said i was basically bed ridden

, suffer from panic attacts, am unable to sit longeror standc longer than 15

minutes( backed up by dr. reports) and hard a very hard time with

concentration.......she said well..... " maybe i could be a " partime homebased

telemarketer on the days i felt good...... then she said but there isn't much

call for that " . she also wrote that in her report to ss.

F. DO NOT GIVE UP!!!!!!!!! i only know of one person with lyme that did not

have to go to either lawyer review or appear in front of a judge to get lyme

related disability and he has many other problems besides lyme. If and when u

go in front of a judge be honest.....tell him what ur life is really like(

yes all the gory details,constant pain,lyme fog, depression, ) tel him that

even though u " don't look sick " u are......in anticipation iof appearing

before a judge.....i stopped cutting my hair and trimming my beard....( i

started looking like a mountain man) i was also gonna wear sweats to my

hearing .......( which is all i wear as they donotr bother my sore hip joints.

fingered i would let him see the real me......not some gussied up

version......i am sick and i look the way i feel.........but i never got to

see a judge......oh well.....

H. call ur local paper and suggest trhey do a story on u and ur fight with

lyme.......i had 3 differant newspapers do a story on me.......one of them ran

state wide 3/4 's of a page........it included my ongoing battle(at the time )

with ss.......i believe they did not like the negative publicity.........if i

can be of any more help email me i am glad to help

Reid

[Guest guest]

expect to be turned down at the reconsideration.......we may not like it but

that is the norm for lyme related disability.......sad but true....in my

reconsideration they listed 10 things that partially disabled me.......however

none totally disabled me by them self....they look at each one on its

own.....they are not allowed to add them all up and say " with all the

partials he is totally disabled " at the reconsideration level.only when u go

to attorney review or before a judge do they look at the " whole picture "

their attorney told mine that with all the things wrong with me it was

rediculous that i was denied but that the normal case workers are not allowed

to make decision s on multiple disabilities adding up to full disability.

as far as your lawyer most of the documents are set forms(form letters) it is

up to u to bring in all the research u can get off of the net on lyme to send

in with the forms.......they more the better.........not only are we lymies

responsable for educating the public, and the medical community, we must also

educate social security....as lyme is not yet on their approved illness list ,

such as aids and other ilness's are ........but eventually we will

be......enough of us are becoming totally disabled due to this disease that it

will have to be added shortly....we are the pioneers though.......let the

lawyer do his thing......he wants to win as much as u do,,,,,,u dont win he

don't get paid........see my other email for more.......keep ur chin

up........believe me god will take care of ur NEEDS for as long as it takes to

get ssd......maybe not ur WANTS......but i can say thru experiance that my

needs were met in a variety of ways by a variety of people while i waited for

ss.....all it takes is faith......and when u are approved it is like......it

hard to explain.....but it is great...like part of the nightmare is

over........I know it is hard ......but if it wasn't hard......everybody would

be collecting it.......not just us who really can no longer hold a job.....

Reid

[Guest guest]

Alison,

We had a lyme lawyer fromMichigan who talked at our support group. He said

that 80% of the cases are dismissed before they are hardly read. it is

standard procedure. Don't give up, get a good lawyer, they are worth it. He

said they will use other diagnosis since Lyme is not listed in their book of

dx's. But he does win for the people around here,

Connie, Michigan

[Guest guest]

The inference is, to me, that they just do

> not accept the concept of chronic Lyme as an official ailment. Do we

> have the ability, in our condition, to convince the world that we are

> real????????

> Alison

>

> --

>

Dear Alison: What if we all locked wheelchairs or gurneys and

surrounded the Capitol Building in D.C.???

Lovette

[Guest guest]

Dear Alison,

I think the reference to a vague " disease " in your SSD refusal has more

to do with bureaucratic procedure than with any denial about Lyme

disease. A friend who worked for Social Security told me that the

refusals are pretty much computer generated standard letters.

I think some of the nonsense about what they say we are able to do is

also just a matter of form letters. One of my refusals said that they

agreed that I could not do my previous work (which involved sitting) ,

but could find a job that involved lifting. (Perhaps a whole new career

as a teamster???? I'm 5'2 " and pretty much bedridden. ) . Anyway , I

was enraged, but my friend in Social Security said that the analyst had

obviously just pushed the wrong button on the computer that generated my

refusal letter..

I was also always angry that they did not seem to respect the

seriousness of Lyme. Here, too , my friend was helpful in telling me

that even if the illness was cancer or anything recognized as being

disabling, Siocial Security was not interested in diagnosis. They are

only interested in functioning.

So, for my hearing, instead of still more letters about the

seriousness of Lyme, I brought a letter from a doctor addressing the

specific issues delineated in the Social Security guidelines. Because

my major symptoms were of CNS Lyme , I had her address the issues under

the heading of Organic Brain Disorder in the guidelines. Needless to

say, it was upsetting to have to use these criteria - but,

unfortunately, accurate. I think you have said that you have serious

motor problems, and I think there is a heading in the SS guidellines

about that.

The other thing about my application process is that I found it so

upsetting to be applying for this, that I undermined myself at the

beginning. I was scrupulously over- revealing, , making a point that I

had some good days. Social Security then evaluated me based solely on

my good days - even if there were only a few a year. Even though I was

pretty much bedridden, I still was ashamed to apply for SS. At this

point, it seems crazy to me that I ever felt that way. Anyway, by the

time I was turned down twice and went to my hearing, I was no longer

pollyanna, just mad as hell.

Good luck with yor application. I know that it's like being in hell.

Ellen

[Guest guest]

Ellen,

You are right, you have to find a " disease " that is listed in their book. I

don't think we will get Lyme in my lifetime, unless too many people take the

vaccine and get ill as ever. Our lawyer always uses the other symptoms from

Lyme to win.

Connie

[Guest guest]

Alison,

What you wrote about is much like my own experience over the

years I forced my body to do what it couldn't until it simply quit

on me. Then there's the friends, that are not really friends because

they haven't a clue why we never come to their homes, or go

anywhere for that matter, yet they've known that I suffered in

pain since the late 70's, first with joint pain.. And, then there's

the family members who are so brainwashed that they call and

tell me about this tiny bottle of liquid for topical pain and how you

have to mix it with cooking oil to make it go further, and how

I should use it instead of taking drugs. The stuff is $70.00 a

bottle and I have all over body, spinal, joint, and muscle pain.

Guess how long that bottle would last! And, how's it going to

help the headaches from hell?

Like you, I'm not truly bitter, but it's hard not to be so hurt

each time something like the topical pain stuff comes up and

the phone stays silent for weeks and weeks on end. No, not

bitter, but at times very difficult to care if I ever hear from

these people who are supposed to be long time friends. I

should have " gotten over it " by now, I'm sure, in their minds.

Just venting and going back to bed where at least my loyal

dog and heating pads are waiting for me!

Wishing us all health and freedom from pain,

both physical and emotional -

[Guest guest]

Well...I guess I am going to be busy lawyer hunting tomorrow.

I don't care what the lawyer says I have, he has enough to choose from-

PHN, morbid obesity, fibromyalgia, severe depression, encephalopathy,

narcolepsy, heart disease, thyroid disease, Hepatitis B, chronic

pulmonary embolism, etc....

It just bugs ME that since I had NOTHING before Lyme, that THAT isn't

good enough!

I guess I need to play this dirty game whether or not I want to!

Hugs,

A

--

[Guest guest]

Ellen...your letter scared me more than anything else!

I taught special ed students in the heart of the South Bronx for 21

years. Even if I wasn't so physically ill right now, I don't think I

would have the heart to stand in front of my kids anymore and tell them

how important it is to play by the rules...because I honestly now

believe that the good guy does finish last, just like they tried to tell

me all this time. They used to laugh at me when I tried to moralize

which my job necessitated doing every day...they believe that you live

fast and get what you can any way you can...so many of them died over

the years needlessly that it used to really get to me but they aren't

totally wrong. Most of them had no higher aspirations than to get their

own welfare checks...I used to tell them till I was blue in the face

that when you did things the RIGHT way, you got your rewards slower, but

they just felt so much better...but what it comes down to is our system

is as corrupt as they are and this is the lesson they learned LONG

before I did. I can't believe I have become so jaded. But when I read

that you go through this whole expensive process just so that a form

letter can be generated....truly, what is the point??????

God!!!!!!!! Clinton speaks of " saving " Social Security...he should let

it DIE and then come up with a system that isn't so totally corrupt!

Ignore me. I am just really tired and still wiped out from the Florida

ordeal!

Alison

--

[Guest guest]

............

Of course my eyes welled up while reading your letter this morning...I

think that the biggest question that remains in my mond over all of this

is-

how could people who " know " us not wonder how all of a sudden our

personalities could so radically change, if not for a very perplexing

reason? How can someone profess to know another person and not realize

that all of a sudden something is very very OFF, and not wonder what

could be causing this? I used to be known as the most mild mannered

person around...(actually, especially at work as the Pushover) and on my

last day there, someone said at least he would never have to be yelled

at by me again. That comment mortally wounded me and it was then that I

realized I was never coming back (he was referring to his demotion, not

my leaving). I guess it never occurred to him or the dozens of other

people I had spent the last 20 years with that I was desperately

attempting to hang onto something that was rapidly slipping away from

me...I guess retrospectively he did me a favor by saying that to

me...but I guess that even if some people have something shoved down

their throats, if it is easier not to swallow, they just won't!

Anyway, spending the day surrounded by warm things<G> sounds like a GOOD

idea to me!

And on that note, have a comfortable day!

Alison

--

[Guest guest]

Alison E Schettini wrote:

> From: Alison E Schettini <alison7@...>

>

> ............

> Of course my eyes welled up while reading your letter this morning...I

> think that the biggest question that remains in my mind over all of this

> is-

> how could people who " know " us not wonder how all of a sudden our

> personalities could so radically change, if not for a very perplexing

> reason? How can someone profess to know another person and not realize

> that all of a sudden something is very very OFF, and not wonder what

> could be causing this?

Boy, Alison, I really relate to this! My personality has undergone such a

change -- I used to have a really long fuse. I'm not as explosively

irritable as I used to be before the abx started working, but I'm still much

more emotionally labile and generally cranky than I used to be.I know it has

cost me one possible relationship already; he has stuck by me as a friend

but we split up our romance because he couldn't take my crankiness level. He

never knew me before I was ill, and was really suprised to hear from other

people that this was very abnormal behavior for me. But by then the die was

cast.

My current sweetie has the patience of a saint (or maybe it's the Prozac

he's taking? :-))

and I'm easier to deal with than the Bitch Queen From Hell that I was last

year. But I can still be *rather difficult*. It helps a little knowing it's

the bugs, but still.... why can't they eat the cranky parts of our brains

and make us cuddly little marshmallows? Of course then we'd never be able to

slap our doctors around and make them give adequate treatment. Hmmmm. Maybe

these bugs aren't so smart after all!

Jean

[Guest guest]

Hi you are problably going to think I am crazy asking this, but How did

you meet your current sweetheart? My boyfriend and I broke up about four

monthes ago in the middle of my relapse. I don't think he could handle it. We

dated fo a year and a half and during that time I was fine having no

symptoms.... But then when I relapsed things got really bad between us. I

can't imagine even meeting someone who would want to date me with this

disease. Anyway just curious to know how you found someone. LOL Hope you are

feeling great. -Val

[Guest guest]

I knew I was in trouble (big trouble) when I tried to run down a cop who

yelled at me for waiting for a parking space<G>

But, honestly, maybe this disease did me a favor. I honestly can't say I

am a dormat anymore! At least in this respect, I am watching out for

myself more than I ever did before. In the pre-Lyme days, I took

anything from anyone....now I don't. So...I guess this isn't all bad! My

husband also had to go on Paxil in order to live with me but he used to

take advantage of me too!

A

--

[Guest guest]

This information is more than helpful, Ellen! Thank you so much for

going to all the trouble of putting it together for me! I think the one

thing I might have in my favor is the fact that my employer gave me a

Disability retirement since I applied for SSDI...if it doesn't mean

anything to them I guess I better batten the hatches and just be

prepared for a LONG, DRY spell financially!<G>

Again, thank you!

Alison

--

[Guest guest]

Alison,

I also thought that since i was granted a disability retirement from work I

would have no problem getting ssd......unfortunatly the criteria is differant

as u have been told...as i have said in previous post's .....a good

lawyer.....do not be upset if reconsideration is denied.....maybe even ask the

lawyer if u may pass reconsideration and go straight to a hearing....( i just

thought of that.....who knows) and GET UR LOCAL CONGRESSMAN INVOLVED.......he

help me immensly i think i would still be waiting if it was not for his

office.......anything i can do please ask.....

Reid

[Guest guest]

Thanks, Reid!

I wonder if I CAN skip the reconsideration! If it is going to be NO

anyway, I could save myself 6 months!

I did try to get my congresswoman involved, by the way but she didn't

bother to answer me after we had communicated several times via E-mail.

She askee me to send her a S-mail with my situation and when I

did-nothing. I contacted her by E-Mail again to find out what had

happened and she claims she never got my letter.....who knows? maybe she

didn't. But I resent it and guess what? Still haven't heard a word.

I am a bit calmer than I was last week though. I guess I just had to get

used to the idea that I am going to remain on the poverty level for just

a bit longer<G>

Alison

--

[Guest guest]

alison,

CALL the congrespersons office......forget the mail......start a relationship

with one of her aides.....i found that personal communication is the only way

to do it.....i tried the mail gotr nowhere...once i called things

happened......good luck....

Reid

[Guest guest]

you too....GO FOR IT.....peaster them everyday till they are sick of u if u

have to.......even though we feel like shit we have to be persistant......fun

huh?????

I have stood up to people i never would have thought of standing up to pre

lyme...

suing my ex employeer for workmans comp due to being bit on the job......jump

on doctors who believe sigals idea of lyme.......and try to educate them.....

we must be our own advocates......as oprah says ( i watch to much tv....lol) U

GO GIRL!!!!!!!!!!!

Reid