Re: Need Celebrity & Watchdog for Research Funds

October 16, 1999

Barb,

I'll pray that God grant's you to will to keep fighting, I make that prayer

for myself and all Lymies everyday anyway! As to your response, in

particular your statement: " Actually, there is probably a lot going on to

help us then we all know

about and I am keeping my faith in that. " I kept feeling the same way, but

when I had good days, I was too scared to place my faith in others. I kept

thinking, what if everyone feels that way and none of us do anything about

it. I am sympathetic to how you are feeling, for now, while you are too weak

to fight, you can have faith knowing others are waging the battle. But I

want you to know what fighting did for me, when I wrote my letters and made

my calls, it made me feel really good, like I made a difference, and even if

I didn't at least I could say I tried. Once you feel good, just write your

personal story and then send it off via email, its very simple. And then

save that same letter and re-send it over and over and over again. When you

gain strength, change maybe a line or two in the letter and repeat the

process. You can so to the web and under search type in Senators, a list of

states come up and you can choose your, and most will bring you to a site

where you can email right there, then you can copy your letter from Word (or

wherever you have it) and paste it in. For some reason I was told to write

to Senator Schumer (NY) and Monyhan (Sp?) of NW. I think they are heading up

the committee. But I also wrote to my State Senator, since I thought it

would mean more, since she depends on my vote. I hope you feel better, I

can't imagine being afflicted with this disease all my life, so I know you

must be pretty depressed. Keep hoping never give up, like you said, all we

need is US, and you are right. You can always feel free to vent online, or

if you want email me personally, anytime, please don't give up hope and your

faith.

Hugs.

Vicki

[Lyme-aid] Need " Celebrity & Watchdog " for Research Funds

>From: " Barbara Fitzmaurice " <blfitzma@...>

>

>From: Memyo@...

>

>>snip< recently on one of the

>news shows, they showed that if a famous person was to ask the

>government

>for funding for an illness that more would be given. Too bad I don't

>know

>of any such person to help the Lyme cause.

>hugs,

>lea ct

>

>**************

>Actually we just need " US " .

>

>I saw that news program also with Stossel reporting the problems

>regarding funding for different diseases. And it did make a difference

>on funding for diseases if a " famous " person was a spokesman for the

>disease, per Stossel's report. Also interviewed was Sen. Arlan

>Spector, and he was kind of caught by surprise and had to admit that

>when recommendations for funding are sent to NIH, those that lobbied

>him and other politicians with a celebrity in tow seemed to end up

>with the funding.

>

>But, as many already know, funds designated for CFIDS research was

>sent elsewhere plus there were funds unaccounted for. Still

>unaccounted for! The man in charge, working with our tax money,

>apologized and promised the CFIDS group that he would do better. Well,

>not good enough.........but even if the funds are designated for

>research, someone has to be a watch dog, follow the money, make them

>account for the money, and make sure the same old people getting the

>funds are using it properly. This takes a lot of stamina for anyone,

>let alone people as ill as we are.

>

>We have voted, or not bothered to vote, for some of the individuals

>responsible for the mess we are in regarding goverments' involvement

>in medical and funding decisions. Yes, the AIDS groups got Liz

>to help their cause. But really when you think about it, how far has

>the research and treatment for this disease really progressed? How

>much tax money went to gov't based research vs. money donated from

>private individuals to private research? I don't know all the answers.

>But I do feel the less we depend on government to solve this mess with

>Lyme Disease the better as far as I am concerned. I could take the tax

>monies I contribute and do a whole lot better with it in seeing it

>goes to the right group dedicated to finding the answers for LD

>instead of to the same old boys research projects that have not

>produced anything but more money in the good old boys pockets.

>

>If we do put pressure on our legislators, we need to tell them where

>the funds should be directed. Not necessarily to the NIH and let them

>delegate. Maybe a board of directors that are composed of LLD and

>people with LD that do have the energy to investigate the best use of

>tax dollars. Educating the public is probably one of the most

>important first steps which some of our State Lyme Groups are doing.

>(And I thank you, because I don't have the energy to do what you have

>been doing.)

>

>Actually, there is probably a lot going on to help us then we all know

>about and I am keeping my faith in that. We hear so many things that

>take away our hope and add to our frustration, but then when I hear of

>a new tiny little accomplishment, it reminds me we are making a little

>progress and headway toward finding that cure for LD.

>

>Thank you all on this support list for the caring and concern you show

>for all of us and for helping us understand what we can do to try and

>wipe this disease off the face of the earth. Just letting another

>person know that you have LD may spread the word that the numbers are

>growing and they may be next needing someone's help.

>

>Sincerely,

>Barb - MI

>

>I may have been born with LD, passed

>down from my mom. I do not remember

>a tick bite or rash. Crashed in '95 and

>fighting ever since. God grant me the

>will to keep fighting.

>

October 16, 1999

barb, i agree with many things u say in ur post ....i am not looking so much

for the govt. to find the answer as to protect those drs. and reasearchers

that are looking(dr and such as it is hard enuff to work without having to

worry about be censured for your work......i am said to read that dr. " b "

caved in.....good the pressure must be awful on all of them....somebodie i

forget who was looking for a llmd in jersey e mail me privatelay ....mine is

in pa....he use to be in jersey till he got pressured and left the

state......he no longer reports any of his cases to the cdc.....the reason

why the doc u spoke about in basking ridge ( dr g) is the way she is know is

from getting her brains beat out over lyme .......i saw her once years ago

and she was fine but have heard from her pts she has changed

immensely.......why are we the only group where those who have suffered the

most (chronic) have joined support groups and back docs who want to treat us

are considered zealots?????is it because we are tropublemakers???? who

question docs???....the " S " holes z(drs.s,s,s) when published liken us to

mental pts......don't we have the rite to feel good......

like i have said before if u listen to them we are must be hypochondics with

esp....as we all share the same experiances.....IT IS NOT ALL IN OUR HEADS

....as some would like to prove.......sorry this is so long but......

Reid

October 16, 1999

vicki.....i feel the same way " if u are not part of the solution u are part

of the problem " ....it also makes me better when i send or do " lyme activism "

maybe its the blood rush......or when i write and have published letters to

the editors about lyme or related subjects.......the biggiest rush is having

my telephone ring .....from people i have never heard from with questions

/comments on lyme........the first week in nov. i am giving a talk to the

local kiwanis club on lyme......we should all try to educate.....just so u

know the ldf will send u hand outs ....call them

Reid

October 16, 1999

yes , call them i think they will send u up to 50 at a time.....i'm not sure

how it works i got mine directly thru karen....her mother is a member of my

support group.....she and her husband work so hard for lyme and in support of

karen and tom...

Reid

October 16, 1999

Thanks Reid,

I didn't know that ldf would send handouts. I've haven't had anything

published yet, but I'm working on it. I love to educated people to, and find

so many people that are astounded at what I tell them about Lyme that they

didn't know. Can't wait to get some phone calls... thanks

vicki

Re: [Lyme-aid] Need " Celebrity & Watchdog " for Research Funds

>From: RMcmur3194@...

>

>vicki.....i feel the same way " if u are not part of the solution u are part

>of the problem " ....it also makes me better when i send or do " lyme

activism "

>maybe its the blood rush......or when i write and have published letters to

>the editors about lyme or related subjects.......the biggiest rush is

having

>my telephone ring .....from people i have never heard from with questions

>/comments on lyme........the first week in nov. i am giving a talk to the

>local kiwanis club on lyme......we should all try to educate.....just so u

>know the ldf will send u hand outs ....call them

>Reid

>

October 16, 1999

Thanks Reid,

Hey, were you ever successful at taping that program??

Vicki

Re: [Lyme-aid] Need " Celebrity & Watchdog " for Research Funds

>From: RMcmur3194@...

>

>yes , call them i think they will send u up to 50 at a time.....i'm not

sure

>how it works i got mine directly thru karen....her mother is a member of my

>support group.....she and her husband work so hard for lyme and in support

of

>karen and tom...

>Reid

>

October 16, 1999

Hi Reid,

Just wanted to alert everyone that if we depend solely on the gov't we

won't get real far very fast. There is not a thing they have done that

they don't mess up. But if we do keep writing letters, I too think

that helps. We have to have someone overseeing the gov't's every move

and make sure that the direction they take is the right one for the

benefit of the people with Lyme. I sure don't have the answers and I

get sick and tired of the run around we are getting. I know my R.N.

license can be taken away in a heartbeat if some doc makes a complaint

on me. But it is not the same if I complain about the treatment and

lack of treatment I received regarding my LD. I know most of them knew

what was wrong but it is a common fact that if the doc does not want

to be bothered with a patient he or she " turfs " you to the next dr.

and charts to CYA.

The medical standards and protocol for the treatment of any disease

have to be followed by a doctor. If they deviate and treat in a

different manner then what is recognized as the standard norm, then

they are guilty of malpractice. Same for nurses. So we are in a

catch-22. I am not defending the docs who think differently, it is

just that I understand what all the little pitfalls can be. To try

something new and not see any benefits makes it even harder to justify

the " new " treatment. What is real sad is that Dr. Natole not only had

the gov't after him, some of his patients that were being treated for

Lyme also filed suit against him because they did not get better. I

assume if the gov't had not gone after Natole and the State Medical

Board, most likely no patient would have filed a suit. Just so hard to

fight the system and end up losing.

Barb

BLFITZMA@...

October 17, 1999

funny thingu asked vicki......i just got done watching/taping it.....helen u

looked great.....it was on at 8:30 tonite (sunday).......will get a envelope

or box and send it to u this week vick.....so who ever wants a copie send a

tape to vicki......definatly worth watching as our very own helen is on it

along with bransfield and pat smith from njldf....Reid

October 17, 1999

Great Reid,

I'll look forward to the tape. Vicki

Re: [ ] Need " Celebrity & Watchdog " for Research Funds

>From: RMcmur3194@...

>

>funny thingu asked vicki......i just got done watching/taping it.....helen

u

>looked great.....it was on at 8:30 tonite (sunday).......will get a

envelope

>or box and send it to u this week vick.....so who ever wants a copie send a

>tape to vicki......definatly worth watching as our very own helen is on it

>along with bransfield and pat smith from njldf....Reid

>

>>Send to -Offtopiconelist messages unrelated to lyme, please.

>/archive/lyme-aid

>/archives.cgi/Lyme-Documents

>To unsubscribe, send email to -unsubscribeonelist

>You may substitute " subscribe " , or " digest " or " normal " for

>the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank

both the message and subject header.

>

October 18, 1999

Dear Reid,

Thank you! I haven't even seen it yet but did send a blank tape to the

studio so that I can show it to my LDSG.

I was 20 pounds lighter only 2 years ago. So weird. I just tried to tell people

how severe my symptoms were, not

just gloss over it and say " I was fatigued " Thanks to that station, they let me

be honest. I wanted to tell people

to report any doctor who made them feel like an " a___ " or misdiagnosed them but

was advised not to. I do tell people

to do so privately. Wish I had more time to talk but it was something. I WAS

foggy that day and the lights are very

very hot. I see Dr. B tomarrow--I'll let you all know what's up. I love you all.

Your friend Helen in Spring Lake (for now)

RMcmur3194@... wrote:

> From: RMcmur3194@...

>

> funny thingu asked vicki......i just got done watching/taping it.....helen u

> looked great.....it was on at 8:30 tonite (sunday).......will get a envelope

> or box and send it to u this week vick.....so who ever wants a copie send a

> tape to vicki......definatly worth watching as our very own helen is on it

> along with bransfield and pat smith from njldf....Reid

>

> > Send to -Offtopiconelist messages unrelated to lyme, please.

> /archive/lyme-aid

> /archives.cgi/Lyme-Documents

> To unsubscribe, send email to -unsubscribeonelist

> You may substitute " subscribe " , or " digest " or " normal " for

> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank

both the message and subject header.

October 18, 1999

helen......my wife (maybe soon to be ex....who knows) watched the whole

show.....she just kept shaking her head.....when u described fatigue " so

profound that unless u lived thru it u would not know what its about .....i

cried...and so did she.....people other than lymeies don't know the

meaning..of being " tired and fatigued " ......it was excellant.....bransfield

was very good ....diplomatic....god if only people knew what chronic lyme was

we would not have this fight.....we (me and wife had a great week) than we

got back to the good old ...good old....we almost cancelled the conselor

for this week and split last nite......after the show she said lets keep on

trtieing....god it sucks.......not being " normal " able to handle this

stuff......and the pain well u all know.......i am looking for a place in

case.....just want to be alone........then she gos...well u can't move to

far... " how are u going to get the kids off the bus...( i can move to our

place in pa for nothing......like i'm gonna drive everyday down) told her if

i am gonna do all that i will live here...i wan tom save this marriage

but.....i don't know ....its hard to understand us.......my head gos 90

differant directions....pain pills don't work i am suffering .....doing legal

and illegal things tro survive.......suicidal....homicidal....ready to check

myself in.....god i hate thtid disease.......i move and myn bones crack and

everyone looks at me.......feel 100......want an answer........but am not

giving up....just a luittle down rite now....I WILL REBOUND....the tape will

be going to vicki this week.......check it out helen was great........

Reid

October 18, 1999

Reid,

I understand your conflicting feelings about wanting to make the marriage

work and not wanting too. Sometimes when you feel so rotten, its just easier

to imagine not dealing with anyone else. Then you can just be alone and not

have to explain your moods. But hang in there, it sounds like she wants to

try, and you will eventually get through this and then your marriage will be

stronger than ever. I'll look forward to the video. Thanks

Vicki

Always remember that the seashore is forever changing with every tide. Ride

the Wave!

Re: [Lyme-aid] Need " Celebrity & Watchdog " for Research Funds

>From: RMcmur3194@...

>

>helen......my wife (maybe soon to be ex....who knows) watched the whole

>show.....she just kept shaking her head.....when u described fatigue " so

>profound that unless u lived through it u would not know what its about

......i

>cried...and so did she.....people other than lymeies don't know the

>meaning..of being " tired and fatigued " ......it was excellant.....bransfield

>was very good ....diplomatic....god if only people knew what chronic lyme

was

>we would not have this fight.....we (me and wife had a great week) than we

>got back to the good old ...good old....we almost cancelled the conselor

>for this week and split last nite......after the show she said lets keep on

>trtieing....god it sucks.......not being " normal " able to handle this

>stuff......and the pain well u all know.......i am looking for a place in

>case.....just want to be alone........then she gos...well u can't move to

>far... " how are u going to get the kids off the bus...( i can move to our

>place in pa for nothing......like i'm gonna drive everyday down) told her

if

>i am gonna do all that i will live here...i wan tom save this marriage

>but.....i don't know ....its hard to understand us.......my head gos 90

>differant directions....pain pills don't work i am suffering .....doing

legal

>and illegal things tro survive.......suicidal....homicidal....ready to

check

>myself in.....god i hate thtid disease.......i move and myn bones crack and

>everyone looks at me.......feel 100......want an answer........but am not

>giving up....just a luittle down rite now....I WILL REBOUND....the tape

will

>be going to vicki this week.......check it out helen was great........

>Reid

>

October 19, 1999

joan yep ...antidepressants and i still get suicidal /homicidal.....( i

love it ......shakes the lyme docs up....) tell them if i am gonna go i will

take some people that piss me off with me.......maybe some lyme

opponents??????

a great way to live huh....well off to my lyme suport group tonite

......catchya later

Reid

October 19, 1999

Reid,

I know how you feel...the pain, the fatigue, the bones cracking, feeling

like I'm 100, the depression....

Are you on an antidepressant? I know that without mine, I'd be suicidal,

too. Also. I know of someone with LD that was put on a Morphine patch

for the severe pain. I know that it's a heavy duty narcotic, but Lyme is

a heavy duty disease. Hang in there, friend...Joan LI NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Continued Sx & Neg. s: '90-'99

1st WB: 4+ Specific Bands: 4/99

Late Neuro-LD Dx: 6/99

From: RMcmur3194@...