Re: [Lyme-aid] Re: Still Searching

[Guest guest]

Sheila i know exactly how you feel... infact i am sure that we all do.. what

day is the wedding on?? i work every wed night i am a pale as a ghost and

have to take my morphine and vicodins ES before i can work then i am still

in pain it is very very hard isleep all day before i go. but i have to do it

to feed my kids i have no hubby or boyfriend. but i do put mind over matter

every wed you are the only one that knows how you yourself is feeling

much love and prayers

in Mich

oh and my kids know what disappoint ment is they been living with it for the

last 2 years.

Re: [Lyme-aid] Re: Still searching

> Hello Vicki and Everyone

> Thank you for the words of support. I am finding this disease harder and

> harder to cope with on a daily basis, particularly being so far away from

> people who understand and deal with lyme on a daily basis. I can't tell

> you how wonderful it is to know that there are lovely people like you all

to

> help when things get tough - and tough it is. I'm a social worker by

> profession and was used to sorting out other peoples' problems, but now I

> have problems that I can't really sort out - this illness has a mind of

its

> own - it is devious and nasty. We have a big family wedding coming up in

a

> couple of weeks which is in London - 6 hours drive away - and will need to

> stay in a hotel for 3 nights. What with all preparations to make, then

the

> travel, I'm not sure I can make it, but if I don't go, I'll be letting my

> little girl down so badly. She never gets to go anywhere because I am

> always too ill. My husband won't even consider leaving me to take her

> alone, and I'm not sure I could handle the nights alone, they are the

worst

> time for symptoms. Do I sound like a whinger. Sorry. I used to be a

> fighter but lost my punch somewhere along the line.

> sheila

>

>

> ------------------------------------------------------------------------

> Best friends, most artistic, class clown Find 'em here:

> 1/4054/8/_/484634/_/958820468/

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>

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is today.

>

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[Guest guest]

girls....i totally agree......i like marta now take a good day for what it

is......a chance to do some long neglected stuff( and usually pay for it by

overdoing) .....i relish those days.....i am getting better at working thru

the what are now " normal days "

this charity thing i am doing has me so excited ...a sense of purpose

again.....i am overdoing and paying but loving it till i fall down......check

out our site

www.racing4kids.org

i am on the board ...and the NJ rep.....it is so much fun.....

plus i can do it from home when i have the energy ( and sometimes when i

don't) plus during those sleepless nites that we all know to much about

love ya all........getting ready to rumble

Reid

[Guest guest]

vicki....cleaning is good but not to fullfilling.....i have sent so many e

mails to teams for donations to my auction i am going cross eyed.....just

read some mail ....some major NHRA drag racing teams are sending me

stuff......soooo cool......i am so excited....even though i am having a

little problem with the paper work with the state....after 3 years of bordom

and self loathing i finally feel good about a few things now.....it has given

me purpose....which i sorely needed....while i know i shall never have a

" real job " again ....i appreciate this......now if i had a lap top i could

work from bed.....instead of jumping up and down all the time due to

pain......tiring but worth it

Reid

[Guest guest]

Reid,

Great site, I bookmarked it so I can read it thoroughly when I have time.

I'm so proud of you! You give me hope, that one day I can do something more

productive other than cleaning my house on one of my " good days " . I cleaned

it completely, this weekend for the first time in months. Ant could sit at

the computer and have a dump truck of dirt dumped all around him and he

still wouldn't care. Lucky for me he doesn't care, because that means he

doesn't get upset with me for not keeping a clean house. In fact,I think he

is glad, because I used to be a neat freak and he is a classic slob! I

digress, I know. But thanks for your inspiration. Vicki, Md

>From: rmcmur3194@...

>

>girls....i totally agree......i like marta now take a good day for what it

>is......a chance to do some long neglected stuff( and usually pay for it by

>overdoing) .....i relish those days.....i am getting better at working thru

>the what are now " normal days "

>this charity thing i am doing has me so excited ...a sense of purpose

>again.....i am overdoing and paying but loving it till i fall

down......check

>out our site

>www.racing4kids.org

>i am on the board ...and the NJ rep.....it is so much fun.....

>plus i can do it from home when i have the energy ( and sometimes when i

>don't) plus during those sleepless nites that we all know to much about

>love ya all........getting ready to rumble

>Reid

>

[Guest guest]

Hi Vicki,

Glad to hear that you had such a good week! When I have a day when I

feel " good " , I enjoy every minute of it!!! And when I'm feeling lousy, I

remember that good days will return again, and that keeps me going.

Take Care,

Joan LI NY

[Guest guest]

Dear Sheila:

Thanks for the reality check! You got a hearty laugh out of me, something I

have not done much lately. Hope you don't loose anything in the near future,

but if you do, let us know about it!

Sincerely,

Annie

[Guest guest]

Sheila, you may have lost your short term memory (like a lot of us) but your

sense of humor is great you could write articles like Irma Bombeck. You made

me laugh, I have done the same thing! Carol F. In Michigan

[Guest guest]

Hi Sheila,

I guess Hope's post and the ID doctor she saw did not scare you off from

the Mattman and Whittaker tests. I am pretty sure they would agree to test

your blood, here is the site that will allow you to contact them.

http://www.bowen.org/

Good luck,

Hugs,

Marta

From: Sheila Darbyshire <sheila-e@...>

>

>Hello

>Can the Mattman and Bowen test be accessed by anyone in countries other

than

>USA?

>Sheila

[Guest guest]

Marta

I am so sorry that you are unable to continue as our moderator. I have been

so grateful for the kind and balanced guidance you have given us since I

joined the list. You have given us all hope and encouragement when we

needed it badly and I for one will miss you in that role, very much. I hope

we will still hear from you often as you have become a good and valued

friend, and also that your health improves as the workload eases up.

Thanks for all your hard work.

sheila

[Guest guest]

Dear Sheila,

hi...wnated to share withg you that my 1st lyme western blot was

negative...yet showed 'significant' bands..i also did a lyme LUAT...lyme

urine antigen test ...thru IGENEX labs and was defineately positve for

borellia...i then was retested again with Elissa (neg) and another western

blot with BBI labs...this western blot was pos. with the bands 62,64, & 66.....

no doubt ...i got 'it'......i started with Biaxcin 500 mg to do the LUAT

while on menus. i continued Biaxcin, as i had a sinus infection, as well as

waiting for my 2 months to see a wonderful lyme-literate doctor...it kept me

on the holding field.

When i saw the lyme-lit doctor she up the doses of Biaxcin to 500mg QID

AND she 'added' on doxcycline 100mg QID and also added FLAGLY 500mg 3x's per

day.

i herxed...but it was welcomed to get to improvement status....

I want to mention that i live in 'sunny' california and thru the windshield

of my car the sun 'burnt' my hands from driving , FROM THE DOXYCYCLINE....do

not expose yourself to the sun....i got 2nd degree burns it hurt terribly and

i could'nt use my hands for a couple weeks...'

Thus the doctor took me off the doxy...got burn cream...and she swithced

the doxy

to Amoxicillian 875mg 2 pills each 3x'sper day.....the flagly was phased out,

only took it for 2 months...

i will be consulting with my doctor to phase in I.V. antibiotics....which

i have heard many success with ...BUT first since the blood work for the

Babesia and hlia is potentially not accurate .....i am going to do a bone

marrow sample from

my spine just to make SURE ...i don't have babsia/erhichliosis (sp?)

....because as we

lymies all know...you will never get rid of lyme if you have babesia...which

must be

taken into account....

i hope this helps you...this has been my experience so far....am still on

the warpath to kill the spirochete enemy....

best,

cheryl

In a message dated 5/15/00 11:37:46 AM, sheila-e@...

writes:

<<H U R R A H ! ! !

After 22 years of terrible, lousy illness, my new specialist has agreed to

try a low dose of doxycycline for about a month and if successful, raise the

dose and continue for three months. Put the flags out, turn up the music,

I'm having a party !!!!!!

The tests for toxoplasmosis were negative, although I have had it at some

stage in my life because I have antibodies. He wants me to have a spinal

tap to exclude other demyelinating illnesses which he is concerned about. I

KNOW I was infected with a nasty lyme-type bug on holiday in NE America. He

says he is not concerned so much with giving it a label which may not be

possible because my W Blot was negative, but trying to find something to

alleviate or remove my symptoms.

One problem - my GP has just diagnosed me with severe gastritis and has put

me on omazaprole (spelling?) antacid which has made a big difference to the

gastric pain. Its also stopped that awful knawing hunger I use to have.

However, I know that this type of drug can bind with the doxycycline and

limit its effectiveness. Does anyone have any opinion on whether I should

stop taking it for the time being? Also, am I likely to develop Herxs on

doxy? Doctor says unlikely but he has little experience of lyme -

especially late lyme. What is the dose that I should be aiming for in the

next few weeks. I get the feeling that 100 mg is way too low. Any advice

please?

By the way Reid, how I admire you and the others like you, who are dealing

with their rotten illness in such a positive way, by doing something useful

in their communities despite all the pain and exhaustion of lyme. I lurk

each night when I can't sleep and read all your stories about your lives and

support for each other, and never cease to wonder at the courage and sheer

guts so many people on this list show in the face of suffering. Some of us

may not contribute very often but we are lifted by your spirit and humour.

sheila-e@...

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Date: Mon, 15 May 2000 19:16:49 +0100

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Subject: [Lyme-aid] Re: Still Searching

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>>

[Guest guest]

Sheila,

Congratulations on at least getting on an abx, even if such a low dose.

Hopefully you will have a herx and that should prove to your doctor that you

have Lyme. Can you have a LUAT test done? You can give your doctor info on

it from their site: http://www.igenex.com/ . I don't know about the gastric

drug, but I do agree with you that 100 mgs of Doxy is too low. How many

times a day do you take it? I was on 200mgs twice a day, then raised to

400mgs twice a day, after a few months, I didn't feel like it was working

any longer. It is usually prescribed for early Lyme and there are so many

stronger abx's he could use. Good Luck, & if I can help in any other way,

please let me know. Vicki, Md

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

From: Sheila Darbyshire <sheila-e@...>

>After 22 years of terrible, lousy illness, my new specialist has agreed to

>try a low dose of doxycycline for about a month and if successful, raise

the

>dose and continue for three months. Put the flags out, turn up the music,

>I'm having a party !!!!!!

>

>

What is the dose that I should be aiming for in the

>next few weeks. I get the feeling that 100 mg is way too low. Any advice

>please?

>

>

[Guest guest]

Hi Sheila,

Congrats on getting your doc to give you abx! I was started on 100mg. 2x

day of Doxy by a Non-LLMD for a total of 3 weeks and really herxed.

When I was fortunate enough to have found my LLMD and saw him for the

1st time, he said that Doxy is good for EARLY Lyme and Ehrlichiosis. He

switched me to 500mg 2x a day of Biaxin. Since then, I have been on a

number of oral abx combos (Ins.Co. won't pay for IV abx), and have found

Ceftin and Flagyl may be putting a dent in this damned disease...

Good Luck,

Joan LI NY

[Guest guest]

Dear Sheila:

It is my understanding that a Lyme patient tries to take 600-800 mg. of

Doxycyline daily. Have you looked at the protocols? It will help to have

one in-hand when you assist your doctor off the floor, smelling salts may be

warranted, too. Take what you can tolerate to blast the organism.

Sincerely,

Annie

[Guest guest]

In reply to Annie,

Yes, I was very wary of the doc doing a spinal tap as a way of excluding

lyme, but the way he described it, it sounds as if he is just wanting to

exclude other demyelinating disorders, and I know he is concerned at a

slight chance of MS. After all these years of crap doctors, their

derogatory comments, and no medical help whatsoever, it is good to know that

this doctor at least, is straight with me and trying to do what he can to

help.

sheila

>Dear Jim:

>

>You make a terrific point towards the end of your response. With a Spinal

>Tap, there is only a 17% chance of finding Lyme. I hope that should the

>result be negative, that this information will not be used as a way to

>justify a non-Lyme diagnosis, termination of Antibiotics (i.e., oral or IV)

>or a referral to a Psychiatrist. Personally, I would do a Spinal Tap but

>only allow it to be tested for non-Lyme testing, especially if you already

>have some positive objective results. Remember, the spinal fluid and other

>bodily fluids belong to you, you get to make the final disposition. Don't

>let anyone intimidate you. False-negatives/false-positives will be used

>against you, coming or going. Be aware!

>

>Sincerely,

>Annie

>

>------------------------------------------------------------------------

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

>Archives can be found at:

>/group/lyme-aid.

>They are filed by month, pick a month and search those archives for

subjects you are interested.

>Lyme chat, go to this URL:

>/chat/lyme-aid

>Should you have trouble opening the page, go back to

/ and make sure you are registered with a password.

You can ask ONELIST to remember you, and will only have to do this one time.

>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]

In a message dated 00-05-18 18:41:13 EDT, you write:

<< I have been on doxycycline for only a week and only at 100 mg a day, but it

seems to be aggravating the gastritis I developed after using NSAIDS for

several years. (I don't take them any more) I am taking an antacid tablet

at night and the doxy in the morning to try to avoid discomfort, but its

pretty awful. does anyone else have symptoms like this. >>

Dear Shelia,

YES! Daughter had these symptoms for 1-2 yrs before being dxd with lyme &

co-infections.

What we found to work like MAGIC was the DGL (stands for deglycerinated

licorice - it's deglycerinated, so that it does not raise blood pressure - as

licorice sometimes does.). If interested any health good store should have

it.

Slowly chew 3 tablets (licorice taste) - 3 times per day - about 20-30 min

before meal. This actually rebuilds mucosal lining in stomach. VERY common

to have what you & daughter experience(d) - after anti-inflammatories. It is

important to chew very slowly, as the saliva reacts in some way with the DGL

(about $12 per bottle, BTW), to set things in motion.

This we found after many expensive tests, over 1 yr on Prilosec, anti-acids,

etc. She used this treatment about 1 yr ago and has never had this problem

again! VBG! Hats off to Dr. Murray!

LEarned of this from a free flyer in health food store - written by a Dr.

Murray (real genius, this doc - has written about 30 books).

If you have trouble finding this flyer, just let me know, can probably find 1

& mail it to you.

Blessings,

Chris

[Guest guest]

Dear Chris:

VBG = ?

Does the flyer give the background/mechanism of how DGL works? Doc Weiss is

having a hard time taking his meds (as probably most people on the list doing

active treatment). I have yet to start eradicating the Lyme, I hope I'm

finishing up with the Babesia treatment and am getting a confirmatory BMB

soon. My turn is next! Don't want to bother you with requesting a hardcopy

needelessly.

Sincerely,

Annie

[Guest guest]

Hello Vicki and Everyone

Thank you for the words of support. I am finding this disease harder and

harder to cope with on a daily basis, particularly being so far away from

people who understand and deal with lyme on a daily basis. I can't tell

you how wonderful it is to know that there are lovely people like you all to

help when things get tough - and tough it is. I'm a social worker by

profession and was used to sorting out other peoples' problems, but now I

have problems that I can't really sort out - this illness has a mind of its

own - it is devious and nasty. We have a big family wedding coming up in a

couple of weeks which is in London - 6 hours drive away - and will need to

stay in a hotel for 3 nights. What with all preparations to make, then the

travel, I'm not sure I can make it, but if I don't go, I'll be letting my

little girl down so badly. She never gets to go anywhere because I am

always too ill. My husband won't even consider leaving me to take her

alone, and I'm not sure I could handle the nights alone, they are the worst

time for symptoms. Do I sound like a whinger. Sorry. I used to be a

fighter but lost my punch somewhere along the line.

sheila

[Guest guest]

Hi Sheila,

Thanks for the good advice, I did not think of heat or ice, I have all

kinds of contraptions that I can try. Used to use them mostly for my neck.

I need to make an appt. with an orthopedic doctor to get good splints for my

hands, I am using one from a long time ago that goes right up to the elbow,

too bulky but it does keep the wrist still. I must take it off to type

though. I hate to call my doctor for another referral for the orthopedic

doctor, he sure isn't making any money off of me with the HMO plan that I

have, but this is getting too annoying, may as well make it while I have my

husband available to take me.

I appreciate your kind words, you give me way too much credit, but I will

stay involved with the list and type when I can.

Hugs,

Marta

From: Sheila Darbyshire <sheila-e@...>

>Dear Marta

>I miss hearing your wise and kindly messages on the lyme group. I too get

>bad carpal tunnel particularly in my left arm. I have a wheat bag which

can

>be heated in the microwave or chilled in the freezer. It is wide enough

>(about 6 inches) to rest the arm on and long enough (about 16 inches) to

>wrap around the affected limb and is really soothing. I prefer to heat it

>as I think this gives maximum relief to the hand. I also have

>professionally made wrist braces which I use only when the condition is

>going through a bad spell. The support is underneath the wrist in the form

>of a padded metal strip and the brace is connected by velcro strips. It

>allows the wrist to rest completely while the fingers are free to move as

>usual. I know they are not very glamorous, but they allow the inflammation

>in the joint to disperse and remove the pressure on the nerve. I hope you

>find some relief - it is very painful I know. If I wear mine, I can type

>and do patchwork, although holding a pencil is a little tricky.

>sheila

[Guest guest]

CTS:

i forgot to that ice and heat are always good remidies always....i put ice

/heat on the hands and wrist with the wrist guard i bought at the drug

store....

and these well made ...well design wrist guards are made so you can where

them and type and eat and drive...able to use your hands....it's no big

deal....it is easy and effective...

[Guest guest]

Neurontin is an anti-convulsant used to treat seizure disoredrs. I think some

are trying this and it seems the brain can seizure from the Lyme and this

helps. KIM

[Guest guest]

Dear Sheila:

I have to rush out the door...are you aware that certain Lyme protocols state

that 600-800mg should be taken? I believe that people with acne take more

than 100mg daily. For your best interests, please look up some of the

protocols that are written/established. At this rate, you could end up a

" lifer, " which I think anyone would ideally try to avoid the maintenance

route.

Sincerely,

Annie

[Guest guest]

<snip>. I am taking omazeprole antacid for

the stomach pain, but really need something for the other pain as well.

My

GP says the pain under my shoulder blades and under both sides of my ribs

is

nothing to do with gallbladder disease or gastritis. She has no idea what

may be causing it. I have heard people in the group talk about Neurontin.

What is this and can anyone say whether it is useful for muscle, joint and

nerve pain. Are there any serious side effects that should make me think

twice about using it?

sheila

----------------------------------------

Same thing happened to me Sheila. Stomach could not tolerate non-steriodial

pains meds, plain tylenol didn't work. Ended up on Tylenol #3 which had

codeine in it. I think the back pain around the middle ribs is mainly

muscle pain and sometimes this spreads down into lower abd. area. Flexeril

really helps these muscle groups that feel like they are in contraction a

lot of the time. Can't stand something binding at all around my mid area

either. This has passed but I still have back problems. Helps to take pain

med on a regular schedule and rest periods. I know what works for some may

not work for others so you play around to find what does work.

Take care,

Barb

[Guest guest]

Good for you Sheila that you could come back at that doctor. I laughed when

I saw the syphilis info, not really funny one bit, but I thought yeah, go

get em! I don't think I ever think fast enough in situations like that and

then I come home and go over what I should have said and done. I think you

did pretty good.

It is pitiful that doctors won't take time to learn or use it as an excuse.

Maybe some over your way need to be summoned to court? Or is that even

possible in the health care system you have? Thank heavens you have your

little one to keep you going!

Are you anywhere near Somersetshire? Somerset Co? I do genealogy, well I

did but slowed done trying to keep up with LD activism. Anyway my grandma

folks originated in that area. Petheram. I some day would like to come over

and see that area. People have been so nice to send me pictures of the

church and some of the old tombstones of ancestors. Really neat. It is a

nice diversion from LD thinking.

Barb

[Guest guest]

Hello Barb,

Sorry, I am at the other end of Britain - in the cold north of the Peak

District. I hear Somerset is beautiful, orchard country, where I would love

to visit someday. Thank you for responding. A friendly voice is much needed

at the moment.

sheila

>Are you anywhere near Somersetshire? Somerset Co? I do genealogy, well I

>did but slowed done trying to keep up with LD activism. Anyway my grandma

>folks originated in that area. Petheram. I some day would like to come over

>and see that area. People have been so nice to send me pictures of the

>church and some of the old tombstones of ancestors. Really neat. It is a

>nice diversion from LD thinking.

>

>Barb

>

>

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>

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>

[Guest guest]

In a message dated 00-06-06 18:13:53 EDT, you write:

<< I promised myself that from now on, I go in to

each consultation armed with knowledge and the support of this group, and

hopefully that will see me through.

Take Care. Sheila >>

Dear Marta & Sheila,

MARTA - so glad to see you posting. I think of you & pray for you ( & ALL)

EVERY DAY!

Sheila - WAY TO GO! I do the same thing - armed with info - most docs ( &

vets) don't like it - even when you print them a copy with site references -

but so be it. Medicine is changing for the better because we are all more

informed about our treatments. After all - it is YOUR body & YOU are paying

DOC to treat you - not the other way around! VBG! (Sometimes they get

confused on this issue...) So - the choices should be YOURS - not DOCS!

Blessings,

Chris