update

[Guest guest]

Good Luck Lovette, you have so much weight and stress on your shoulders that

it must be making your lyme rage out of control. I will hope for the best.

I will try to do some praying for you!!

Hugs

Amy

[Guest guest]

Hi Friends: I've been too distraught and distracted to post lately, so

I thought I'd bring you all up to date on my family. My son, age 13, is

now on 30 days of IV Rocephin, and my daughter, just turning 12, is now

on 200 mg/day of doxy. My husband also tested positive, although

without symptoms, so he's on 400 mg/day of doxy for 1 month. I'm on

Zithromax IV for 4 months, pulse therapy. Anyone have any insight on

the appropriateness of these treatments?

My minister calls and asks how I'm doing. I really am just too

tired to pray.

Love to all,

Lovette

[Guest guest]

You're in my prayers

KAREN

[Guest guest]

Dear Lovette,

I really do KNOW how you feel. Almost like, " How can I be alive and

breathe while I'm this sick AND have BOTH children AND a husband to worry

about too with this illness. " I AM and there too. Hardly believable. LISTEN

to me. I want you to e-mail me. I have lived and live your life. ALL of us

were on IV. I'm still the sickest BUT-----I AM FEELING BETTER!!!!!!!!!!!! I

almost gave up hope many times. I'm not special. I did pray but couldn't do

that just as you said most times-----too sick. OUR kids feel GOOD now. My

husband feels GOOD now. I never was too religious but I now believe that in

the end, even juat asking God to put all this in his hands does help

eventually, you'll see. Our older Czechoslovakian priest kept coming to see

me. I cried and cried in pain, in a fog, etc. He kept saying, give it to

God. I wasn't sure of my name let alone how to give it to God. He was so

calm, so calm! Just kept coming, giving me Communion, telling me I didn't

have to say any penance (suffering is enough for God) I found out later he

was in a concentration camp!! We still have lots to worry about but now I

know SOMEHOW we'll survive. It is truly hard to think that way when you're

really sick but as soon as a glimmer of improvement is felt you'll be able

to hang on. I promise you, just when you are down to the last second of the

last day that you can stand any more, some tiny improvement will happen. I

wouldn't say this unless I lived it. That alone will keep you hanging on. I

" lost " many " friends " . The golden ones rose to the occasion. Even if you

have ONE person who cares, you'll have more than all the riches in the

world. I am thinking that you and your husband can hold on together. We both

finally sought help and still do with a LL psychiatrist. It is very hard and

my husband is supportive! Ask for help. That was all new for me. I do it

now. I am YOU!! PLEASE lean on me to help you. I feel up to being able to

write back now. Get me while you can!! Just maybe I can help you to keep

going. I really do care. We all do.

F. Mott wrote:

> From: " F. Mott " <smott@...>

>

> Hi Friends: I've been too distraught and distracted to post lately, so

> I thought I'd bring you all up to date on my family. My son, age 13, is

> now on 30 days of IV Rocephin, and my daughter, just turning 12, is now

> on 200 mg/day of doxy. My husband also tested positive, although

> without symptoms, so he's on 400 mg/day of doxy for 1 month. I'm on

> Zithromax IV for 4 months, pulse therapy. Anyone have any insight on

> the appropriateness of these treatments?

>

> My minister calls and asks how I'm doing. I really am just too

> tired to pray.

>

> Love to all,

> Lovette

>

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[Guest guest]

HI Lovette I hope these meds really wipe this out of your children. I don't

know how sick they have been and I hope it is minimal. Do you know why they

put your son on IV and not your daughter. they are around the same and i

thought it seemed strange. I am interested to know what the doctors thoughts

were on this. I also want3ed to know how you have been. I thought you were

doing well on the biaxin and plaquinel. Maby that wsn't you I forgot. I am on

that now and not doing so hot. Don't really know what to do next. Please

write when you can. -Val

[Guest guest]

Hi Lovette,

It was good to hear from you. Sounds like your household has its hands full.

I hope all the meds help and all of you show improvement.

Love and hugs,

Connie. MI

[Guest guest]

Hi ,

I have been meaning to write you for awhile now, I know you are going

through an especially stressful time especially worrying about your

daughter's health and how she is dealing with this disease too. Talk about

a double whammy, you and Lovette sure have lots in common, I guess there are

others on this list as well trying to help their kids and being so sick

themselves. I don't know how you guys do it, I guess you do it cause you

must. I am glad the doctor gave you some Xanax to take the edge off.

Switching to IV doxy will help as well since it will give your gallbladder a

break from the possible sludging and treat any coinfections you may have

with the ehrlichiosis diseases. I am sorry you had to pull your midline

yourself, but being a nurse I know you were very careful.

I must comment that when I was treated with high doses of amoxicillin and

probenecid, I had the worst herx ever, and you may want to keep a watchful

eye on your daughter, this would be especially scary for one so young. 14

is a tough age, sick or not, and you really have your hands full. You are

in my thoughts and prayers, and please don't worry about posting as much,

just try to handle what you have now, just check in once awhile to let us

know how you are doing,

{{{{{{{HUGE HUGS}}}}}}

Marta

>From: lc lott <lclott@...>

>

>Hi all-

>Not been on much as Ive have really been feeling crappy. Just thought I

>would update everyone on whats happening. Saw my doc on Fri and we

>opted to switch to oral Doxy since the Rocephin wasnt doing alot

>anymore. He thinks I was HERXing so that was another indicator to him

>that it was time to switch. My SPECT scan showed decreased blood flow

>to the frontal area of my brain but my MRI was normal. My ECHO was

>normal so the chest pain must be muscular. In fact he said I was one

>big muscle spasm from my L shoulder all across my chest up my neck and

>down my back. Told him about the extreme stress right now and he gave

>me Xanax to help with that. Also Arthrotec for the joint and back pain.

>My LUAT came back highly positive and we are still waiting on the 2nd

>set of cultures.

>Since starting the Doxy (Sat am) I have gotten a severe case of fatigue

>and todat have the shakes like you wouldnt believe. The Xanax is

>helping my mental state. Now instead ofexploding I just dont care.

>Had to remove my midline myself Fri night or would have had to wait

>till who knows when for the hospital to schedule it. My doc didnt want

>to do it in the office since I have a 2 1/2 hr drive home. So I did it

>myself. Wouldnt recommend that to anyone by the way. There are risks in

>removing those but I was so sore and broken out from the tape I just

>didnt care.

> My 14 yr old daughter started on Amoxicillin and Probenecid on Sat as

>well. It is really zapping her as well. We are both in bed more than up

>at this point. Im hoping by next week we will both see an improvement.

>She is doing much better mentally now that she talked with the Dr. and

>he assured her we are catching this pretty early and she should make a

>full recovery, that it will just take some time and meds. She asked him

>if she was going to end up like me and he assured her mine was much

>more advanced and had I been treated early I would be much better by

>now. That seemed to help ease her mind. So now we are both couch

>potatoes and my son and youngest daughter are fending for themselves.

>Makes for a real happy household but like I said Im on Xanax and just

>dont care.

>Didnt mean to carry on and make this a book but just got carried away.

>Take care all. When things settle down and I can find my sense of humor

>again Ill get back to my old self and start posting more.

> L(MI)

[Guest guest]

This is the first I've ever heard about the possibility of nightmares being

seizures. Is there any literature available on this?

[Guest guest]

Hi,

Not that I am aware of, but if I find out more, I will let you know.

Marta

>From: lisa86@...

>

>This is the first I've ever heard about the possibility of nightmares being

>seizures. Is there any literature available on this?

[Guest guest]

Hi Marta,

I really think that I have been " Herxing " since I started abx in May!

All of my sx have increased, as well as welcoming some new ones! I don't

think that I'm getting worse because I really don't have LD, (but have

some other " unknown mystery ailment " " like my last non-LLMD said)

because I've noticed different sx getting worse depending on the abx I'm

on at the time.

Now to the dreams...My dreams have gotten scarier and more violent as

time goes on. If I'm lucky, I'll wake up and stay up for awhile just to

make sure they don't pick up where they Ieft off. But then it's really

hard to get back to sleep, and I am so exhausted.

I have found Antivert to be very helpful with the dizziness, and my doc

put me on Magnesium for the twitching. Feel better soon,

Joan LI NY

[Guest guest]

Hello all, I went to my neuro dr yesterday. I really didnt like him. He

started off saying " what neuro problem am I seeing you for " ? He had all my

records and labs and notes from my doc! He claimed that all my labs were

" overwelming him " !

But I stayed and listened to what he had to say. He admitted that he didnt

know much about Lyme. He said that he didnt think that my bell's palsy was

coming from Lyme becouse u usually have meningitis with it with Lyme. (GASP)

He seemed unconcerned with my other complaints (stiff and sore neck, joint

pain, fatigue). He said that maybe all these symptoms might be coming from

stress (UGH!!) But he agreed to 'work me up for Lyme' only at my insistance

becouse since all my labs were neg for Lyme, he didnt really think I have it

(does this sound familuar!) So on Mon, I will have a brain scan (they wont

find anything since my head is empty!), an EKG, becouse Lyme can cause heart

irregularities, and if all this is neg, then he wants to to a Lumbar puncture

to see if it is in my spinal fluid. He also said that he didnt want to give

me antibiotics since he beleives these are prescribed too often and can

weaken the immune system. But if my tests come back positive, he will treat

me. So I feel this was pretty much a waste of my time and his. He also

suggested that the bell's palsy could be a precurser to diabetes, and I will

feel better if I lost the 30 pounds I gained since Nov. But I did make an

appoint with a Dr in DC who is supposedly LLMD. My ins wont cover this, but

I feel I owe it to myself to have 1more opinion.

PHEW!

Deb-va

[Guest guest]

Hi Joan,

The Antivert has helped tremendously, I take all my morning pills after I

eat in the AM...and I don't want to eat as soon as I get up, so I am dizzy

as I write this. Mornings used to be when I was the most energetic, before

Lyme that is. Now I am lucky if I can feel functional by 10AM.

It appears to me that Nightmares are really a manifestation of this

disease and the stress we are living with daily trying to deal with the

chronic illness. I am so sorry so many of you on this list have to deal

with it. You would think we could escape this in our sleeping hours.

Wow, herxing since May, that sounds painful. Hey, when you find out what

that mystery disease is, run it by the group, maybe that's what we all

have....;-)

How much Magnesium do you take and how often???

Hugs,

Marta NJ

From: Namkrats3@... (Joan S.)

Hi Marta,

I really think that I have been " Herxing " since I started abx in May!

All of my sx have increased, as well as welcoming some new ones! I don't

think that I'm getting worse because I really don't have LD, (but have

some other " unknown mystery ailment " " like my last non-LLMD said)

because I've noticed different sx getting worse depending on the abx I'm

on at the time.

Now to the dreams...My dreams have gotten scarier and more violent as

time goes on. If I'm lucky, I'll wake up and stay up for awhile just to

make sure they don't pick up where they Ieft off. But then it's really

hard to get back to sleep, and I am so exhausted.

I have found Antivert to be very helpful with the dizziness, and my doc

put me on Magnesium for the twitching. Feel better soon,

Joan LI NY

[Guest guest]

deb, i would find a new nuero who does know about lyme....u will never

convince anyone who does not believe in this disease and will only aggravate

urself trying.....also my personal opinion is i would not take the spinal

tap......the diagnostic value of this test is not worth the pain and possible

complications.....as i always say lyme is a clinical dx......the tests are

just not reliable yet......and the only ones who believe in them are drs.

trying to disprove lyme.......just my opinions....good luck however u decice

to proceed...

Reid...nnj

[Guest guest]

Hi Deb,

Boy your story is so familiar, finding a specialist who understands Lyme

disease is like looking for a needle in a haystack. Please reconsider

having that spinal tap done, if you can. True, they do it to rule out other

diseases, but if you expect the doctor to find proof of LD in your spinal

fluid, the chances are slim to nil. While the EKG is a good idea, as is the

brain MRI, mine shown lesions on the brain which is an indicator for either

MS or Lyme. I vividly recall my tick bite and the onset of my illness so I

knew it was Lyme and declined the offer of a spinal tap. Your neuro sounds

a bit jaded, his first words to you were not very encouraging, and he is

totally off-base about the bell's palsy. It is so sad how ignorant these

damn doctors are about LD. Makes you wonder what else they don't know

about! When I went to my first Neuro, she said, " Why does he keep sending

me these Lyme patients!? " Referring to my doctor. Not a very good start

for me who was scared to death and so so sick at the time. Since then I did

find a good neuro, he hates dealing with LD, but will work with me as far as

the symptoms I have developed because of it. I sure hope you make out

better with the LLMD you plan to see in October. I waited from October 96

to January 97 to see my LLMD, because I had to change insurance plans to see

him.

Hugs,

Marta NJ

>From: DJinMECH@...

>

>Hello all, I went to my neuro dr yesterday. I really didnt like him. He

>started off saying " what neuro problem am I seeing you for " ? He had all

my

>records and labs and notes from my doc! He claimed that all my labs were

> " overwelming him " !

>But I stayed and listened to what he had to say. He admitted that he didnt

>know much about Lyme. He said that he didnt think that my bell's palsy

was

>coming from Lyme becouse u usually have meningitis with it with Lyme.

(GASP)

>He seemed unconcerned with my other complaints (stiff and sore neck, joint

>pain, fatigue). He said that maybe all these symptoms might be coming from

>stress (UGH!!) But he agreed to 'work me up for Lyme' only at my

insistance

>becouse since all my labs were neg for Lyme, he didnt really think I have

it

>(does this sound familuar!) So on Mon, I will have a brain scan (they wont

>find anything since my head is empty!), an EKG, becouse Lyme can cause

heart

>irregularities, and if all this is neg, then he wants to to a Lumbar

puncture

>to see if it is in my spinal fluid. He also said that he didnt want to

give

>me antibiotics since he beleives these are prescribed too often and can

>weaken the immune system. But if my tests come back positive, he will

treat

>me. So I feel this was pretty much a waste of my time and his. He also

>suggested that the bell's palsy could be a precurser to diabetes, and I

will

>feel better if I lost the 30 pounds I gained since Nov. But I did make an

>appoint with a Dr in DC who is supposedly LLMD. My ins wont cover this,

but

>I feel I owe it to myself to have 1more opinion.

>PHEW!

>Deb-va

[Guest guest]

Hello everyone,

Just a update on myself. Afew days ago I lost my ability to speak. My new

Holistic doctor put me in the hospital. Got me a new neroligist and got my

uroligist. Started running tests mri's,x-rays,physical therapist,occupational

therapist,.Mri's still show nothing but they all ran tests on me for lyme

disease,food allergies,eviormental posioning, all were negtive. So did a

brain scan today and let me out under a 5 year watch for ms and put me on

xanax, and neuerontin. So I geuss were getting somewhere.So a I said this is

just a update.

love light and laughter

Raven

[Guest guest]

I suggest you eliminate in form of aspartame, ie Nutrasweet. The methanol

produced when it enters your body is toxic to your brain. Methanol is

another name for wood alcohol. It is recognized as causing blindness

during prohibition times when people were trying to get regular alcohol

(ethanol).

At 09:23 PM 09/25/1999 EDT, you wrote:

>From: GRREENGRRL@...

>

>

>Hello everyone,

>

>Just a update on myself. Afew days ago I lost my ability to speak. My new

>Holistic doctor put me in the hospital. Got me a new neroligist and got my

>uroligist. Started running tests mri's,x-rays,physical

therapist,occupational

>therapist,.Mri's still show nothing but they all ran tests on me for lyme

>disease,food allergies,eviormental posioning, all were negtive. So did a

>brain scan today and let me out under a 5 year watch for ms and put me on

>xanax, and neuerontin. So I geuss were getting somewhere.So a I said this is

>just a update.

>

>love light and laughter

>

>Raven

>

>>_

>

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____________________________________________________________

R. Sooley, DC

Gerald F. Sooley, DC

Sooley Chiropractic Health Center

11 E. Fairchild St.

Danville, IL 61832

(217) 431-3290 voice

(209) 797-6521 fax

Drgeorge@...

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[Guest guest]

In a message dated 10/27/99 7:26:46 AM Eastern Daylight Time,

mlmccoy@... writes:

<< Lyme doctor this past Saturday, my husband went with me and asked the

doctor if we could go self-pay since Insurance will obviously decline IV

therapy....the doctor said let's wait to see if we can get some " objective

evidence " that will prove to

Aetna USHC that I do need this treatment. >>

Marta, Has USHC declined you b4? My husband and I both got 12 weeks IV

therapy paid in full by AUSHC....they do pay...

they have paid every bill for every test.....<just trying to give you hope

here> Bernadette

[Guest guest]

In a message dated 10/27/99 7:26:46 AM Eastern Daylight Time,

mlmccoy@... writes:

<< I really have such little faith in SKB labs, I am

considering asking the doctor to send my lab work elsewhere and possibly

this will help. I know I will have to pay for it myself. >>

one more idea...let your blood be sebt for the screening for the Lyme

study,,,anyone who does is NOT obligated to join the study, just cause they

drew your blood...just a thought to get a different processor for your

WB....can't hurt....and if the Dr. insists on it...USHC will pay for

IGENEX...they did for a friend of mine who is also USHC....it just takes some

work on the Dr's office part...to get an approval...just be wanred if you get

an approval number...KEEP IT SAFE...you WILL need to refer to it...as good

old USHC is famous for losing paperwork and then not paying till you

straighten it all out...Bernadette

[Guest guest]

In a message dated 10/27/99 8:50:26 AM Eastern Daylight Time,

mlmccoy@... writes:

<< he is pretty conservative, and

like most Lyme doctors today, afraid of insurance companies. I am grateful

he is trying to get me approved now. If they decline, we will definitely

appeal, >>

then his conservatism may also help your case...because he tries to avoid

iv....IF...you get denied...ask for what paperwork they sent to the ins

company..

...I say this often because office workers do not document as clearly as they

could...I had my initial iv request sitting because my Dr. never wrote what

iv med to give..

..and the office people insisted it was on there...the home care company

refaxed the empty form to the Dr. to prove to the witless woman in the office

the only med on there was what I WAS ON...Biaxin orals...not the iv Zith the

Dr. wanted me put on....

that same doctors office warned me it could take weeks for my

approval.....what took almost a week for...was the damn office to fill out

the form...once they filled it out, and I got them to write the iv med

order...I was approved in less than 8 hours.....

so it was NOT the insurance company...it was the inability and laziness of

the office staff........if I did not follow all of this up....it is very

possible treatment would have been delayed 4-6 weeks or more...and not

because of the insurance company.

...I am less than thrilled because I am stuck with USHC, as an insurer

....BUT noone gives credit when credit is due...and my case manager from USHC

told me...I would be approved as long as my Dr. felt it necessary.....and I

was .....12 full weeks...as was hubbie....also hope it gives hope to some

other that things might get covered if they try...Bernadette

[Guest guest]

In a message dated 10/27/99 9:57:47 AM Eastern Daylight Time,

ferraroa@... writes:

<< Always get copies of everything from your doctor's

office, they have come in handy for me more than once and saved a lot of

time and trouble. But I did have to learn the hard way.

>>

which is why this list is so helpful...to help others escape...learing the

" hard way " Bernadette

[Guest guest]

Hi Bernadette,

USHC paid for 6 weeks in January 1998, my doctor has not tried to get an

approval for more due to sero-negativity, he is pretty conservative, and

like most Lyme doctors today, afraid of insurance companies. I am grateful

he is trying to get me approved now. If they decline, we will definitely

appeal, and if they approve me, I will attempt to stay on the IV as long as

I think is necessary,

Thanks,

Marta NJ

-

>From: BratDet@...

>

>In a message dated 10/27/99 7:26:46 AM Eastern Daylight Time,

>Marta, Has USHC declined you b4? My husband and I both got 12 weeks IV

>therapy paid in full by AUSHC....they do pay...

>they have paid every bill for every test.....<just trying to give you hope

>here> Bernadette

>

[Guest guest]

Thanks Bernadette,

Good idea, I printed out your letter so I won't forget, as they won't be

drawing my blood till next month some time.

Hugs,

Marta

>From: BratDet@...

>

> this will help. I know I will have to pay for it myself. >>

>one more idea...let your blood be sebt for the screening for the Lyme

>study,,,anyone who does is NOT obligated to join the study, just cause they

>drew your blood...just a thought to get a different processor for your

>WB....can't hurt....and if the Dr. insists on it...USHC will pay for

>IGENEX...they did for a friend of mine who is also USHC....it just takes

some

>work on the Dr's office part...to get an approval...just be wanred if you

get

>an approval number...KEEP IT SAFE...you WILL need to refer to it...as good

>old USHC is famous for losing paperwork and then not paying till you

>straighten it all out...Bernadette

[Guest guest]

Bernadette,

A good point you made - Always get copies of everything from your doctor's

office, they have come in handy for me more than once and saved a lot of

time and trouble. But I did have to learn the hard way.

Vicki

Re: [ ] Update

>From: BratDet@...

>

>In a message dated 10/27/99 8:50:26 AM Eastern Daylight Time,

>mlmccoy@... writes:

>

><< he is pretty conservative, and

> like most Lyme doctors today, afraid of insurance companies. I am

grateful

> he is trying to get me approved now. If they decline, we will definitely

> appeal, >>

>then his conservatism may also help your case...because he tries to avoid

>iv....IF...you get denied...ask for what paperwork they sent to the ins

>company..

>..I say this often because office workers do not document as clearly as

they

>could...I had my initial iv request sitting because my Dr. never wrote what

>iv med to give..

>.and the office people insisted it was on there...the home care company

>refaxed the empty form to the Dr. to prove to the witless woman in the

office

>the only med on there was what I WAS ON...Biaxin orals...not the iv Zith

the

>Dr. wanted me put on....

>that same doctors office warned me it could take weeks for my

>approval.....what took almost a week for...was the damn office to fill out

>the form...once they filled it out, and I got them to write the iv med

>order...I was approved in less than 8 hours.....

>so it was NOT the insurance company...it was the inability and laziness of

>the office staff........if I did not follow all of this up....it is very

>possible treatment would have been delayed 4-6 weeks or more...and not

>because of the insurance company.

>..I am less than thrilled because I am stuck with USHC, as an insurer

>...BUT noone gives credit when credit is due...and my case manager from

USHC

>told me...I would be approved as long as my Dr. felt it necessary.....and I

>was .....12 full weeks...as was hubbie....also hope it gives hope to some

>other that things might get covered if they try...Bernadette

>

>>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.

>

[Guest guest]

marta misse du....oove ya babe ...Reid

[Guest guest]

In a message dated 10/27/1999 7:26:43 AM Eastern Daylight Time,

mlmccoy@... writes:

<< So please dear friends, bear with me for a bit, sometimes reading your

posts

and seeing how bad some of you are doing, can be more depressing, yet there

are also success stories. I have not abandoned you, just taking a bit of a

break trying to get well,

Love to you all,

Marta NJ

>>

Dear Marta, as I read your post, I have tears streaming down my face. I

agree with Marleen in that you should put yourself first! We are all on this

list for support of one another, and that means you too! I never once

thought that you have 'abandoned the list',, instead I knew that you were not

feeling well. I will pray for you because YES you do deserve it!

HUGS AND KISSES

Deb