Help

[Guest guest]

Amy,

I'm pretty foggy today and having trouble putting things into words. But

I needed to respond to your posting. Les's doctor behavior sounds

absolutely CRIMINAL. My stomach turned in a giant knot when I read about

the chemo treatment. I pray that he finds another doctor QUICKLY and can

report this one to the appropriate authorities. I want to scream for

him.

beth

SF, CA

[Guest guest]

Margie,

This list is made up of good, caring souls like you who will take the

time to copy and paste the relevant sites to help someone in need. Thanks

so much for giving this info to Amy for her friend, I have written to Rita

Stanley, West Coast support group leader, she says Washington State is one

of the worst states to contract this disease, it seems Amy's poor friend

will have to go out of state to seek treatment. Rita says she is hearing

more and more doctors offering chemo treatment, and she cannot believe that

it would come to that. She said she was hoping it was a hoax! It makes no

sense to offer such a tough drug as chemo, when abx are so readily

available. Hopefully Amy can convince them to give it a try with all the

information we are providing.

Hugs & Thanks,

Marta NJ

>From: Margie Roswell <mroswell@...>

>

>1. Chemotherapy for someone without cancer does indeed sound crazy.

>Given the tick bite, and the rash (did the rash expand in size over many

>days?) he probably does have Lyme. Antibiotics are the treatment of

>choice.

>

>2. Make sure he is tested for other tick-bourne illness, and not just

>Lyme.

>

>3. One can have Lyme, and still have negative bloodtest results (see last

>link below)

>

>4. Here are some of the most useful resources:

>http://www.geocities.com/HotSprings/Spa/6772/washington-patients.txt

>http://www.geocities.com/HotSprings/Spa/6772/washington-index.html

>http://healthlinks.washington.edu/nwcphp/lyme/

>http://www.geocities.com/HotSprings/Spa/6772/resources.html

>http://www.geocities.com/HotSprings/Spa/6772/false-negative.txt

>

>You're a good soul. You will get additional help from this list, as well.

>This is a very caring group. All the best to you, and your friend.

>

>Margie

>

>--

>Margie Roswell

>3443 Guilford Terrace

>Baltimore, MD 21218

>H: 410-467-3727

>W: 410-455-6802

>E: mroswell@...

>W: http://hello.to/maps

[Guest guest]

I'm willing to bet that the insurance companies are

okaying the much more expensive and potentially

deadly chemo treatment too! If they can shut us up

they can kill us off since we don't have great immune

systems anyway!

J & M McCoy wrote:

> From: " J & M McCoy " <mlmccoy@...>

>

> Margie,

> This list is made up of good, caring souls like you who will take the

> time to copy and paste the relevant sites to help someone in need. Thanks

> so much for giving this info to Amy for her friend, I have written to Rita

> Stanley, West Coast support group leader, she says Washington State is one

> of the worst states to contract this disease, it seems Amy's poor friend

> will have to go out of state to seek treatment. Rita says she is hearing

> more and more doctors offering chemo treatment, and she cannot believe that

> it would come to that. She said she was hoping it was a hoax! It makes no

> sense to offer such a tough drug as chemo, when abx are so readily

> available.

[Guest guest]

Hello everyone....

I just wanted to say thank you to everyone that has sent a reply to my

post...

I had to be gone for most of the day and yesterday,so when I got home I

went through the mail and forwarded all of your posts down to the

printer and finally got them all printed...

I apologize for not having time to personally thank all of you..

I have been trying to read through as much info on this list and all of

the info that you all are sending,as I can,and printing it all off to

take down...

I hope you all understand...

With them wanting to start the chemo on mon. I am trying to get as much

together as posssible.

I will be going down to see Les this morning and bring down all the

material..

Thank you soo much everyone and god bless you all!!!

When I get home tonight I will post the list and let everyone know how

things are going..

If ANYONE knows of a LLMD in Washington please let me know..

Or if anyone knows of one even close.

Oregon,Idaho etc...

The other alternative is if anyone knows of anything in Montana..

This is a whole story in itself,but we could also travel there and have

help with the whole situation there..{My best friend,and Les`s Ex-fiance

is there(same person)

and she could be possibly able to help,

What a wonderful group of people you are..I just can`t tell you how much

it helps to not feel so alone in this...

I will not be leaving for an a couple hrs(its 4:30 am here right now) so

anything else that anyone can send I will print and take...

Sincerely

Amy Casca

[Guest guest]

Technically, any drug therapy, whether antibiotic regime for

infections or cardiac drugs for heart problems are also considered

chemotherapy, " chemical therapy " same as drugs for cancer. So make

sure the doc is not meaning to say " antibiotic " or chemical therapy,

chemotherapy for treatment of LD.

Barb BLFITZMA@...

[Guest guest]

Barb,

No I wish that were the case.

It is regular chemo therapy normally used for cancer.

His dr`s just will not cnsider the possibility of Lyme because we are in

Wa state and because he has tested negative for lyme.

But tests were done by very lyme ILLITERATE Dr`s...:{

Anyway they think that a rare form of undetectable cancer is a more

plausible alternative to the possibility that he has Lyme..

This man has spent most of his life in the woods,spends months out of

the year hunting,who knows really how many times he has been bitten.

He says when they are skinning Deer,sometimes they are just full of

them.

He had alot of the early symptoms and now seems to be in a later

stage,unfortunately it seems to be attacking him neurolgically at a very

fast rate..

Thanks for the post though,sure wish it would have been the case.

They say that this is just their last ditch effort,basically

experimentation...

One of his Dr`s actually said that to him when he expressed concern...

This is so frustrating....

I spent the whole day with him today,and it is so hard watching him get

worse..

Thanks again everyone for your posts...

Please keep them coming,it really seemed to lift his spirits a little to

not feel so alone..

Amy

[Guest guest]

Hi Amy,

I guess if it were me or my loved one the questions to ask is, what

drugs would you be using? And for what kind of cancer? Do you have a

diagnosis? I would like a second opinion!

The docs looked for melanoma on me and leukemia, but none of the

hematologists/oncologists found these and thought my family doc was

nuts for sending me to them. I assume this is an oncologist that is

saying your friend should have chemo? Did anyone get a copy of all of

his medical records? From docs, hospitals.......he should get all his

lab reports, x-rays, any tests that have been done. Only he can get

them unless he writes a letter and signs saying to give them to a

family or friend. I got all the records from all 12 docs I was

referred to. Most were just covering there ass in the final reports

and turfing me off to another doc. But your friend is entitled to his

medical records and should get them to hand carry to the next doctor.

But always keep a set for his own use. If someone is able to go over

them with him and explain what everything means, all the better.

I wish you both much luck. It is so hard when you have to start

reading your own reports and trying to interpret them, but I suggest

to any patient, get your records because doctors are missing things so

easily now. Also start that diary. Make a list of all your symptoms

and problems. Try and go back as far as you can remember for any

treatments. A little story starts to unfold of when and what is going

on.

Barb () Fitzmaurice - Michigan

BLFITZMA@...

| From: amycasca@... (Amy Casca)

|

| Barb,

| No I wish that were the case.

| It is regular chemo therapy normally used for cancer.

| His dr`s just will not cnsider the possibility of Lyme because we

are in

| Wa state and because he has tested negative for lyme.

| But tests were done by very lyme ILLITERATE Dr`s...:{

| Anyway they think that a rare form of undetectable cancer is a more

| plausible alternative to the possibility that he has Lyme..

<snip>

[Guest guest]

This is a great suggestion. I would add a journal is something you can do

without hassling with the doctors. Trust me the docs will hassle you for a

while. In the meantime start the journal today. Everything from today on

should be in great detail. How you feel, what doc did you see, what did the

doctor say in your words. Everything from before today just do your best to

remember. If you need to add stuff that you forgot last week then add it.

A complete history like this will benefit the LLMD when you find him. And

who knows you may still be fighting with your old docs about paperwork when

you find your good doc.

You are a great friend for all of your efforts!!!

Robynn

Re: [ ] help

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

>

> Hi Amy,

>

> I guess if it were me or my loved one the questions to ask is, what

> drugs would you be using? And for what kind of cancer? Do you have a

> diagnosis? I would like a second opinion!

>

> The docs looked for melanoma on me and leukemia, but none of the

> hematologists/oncologists found these and thought my family doc was

> nuts for sending me to them. I assume this is an oncologist that is

> saying your friend should have chemo? Did anyone get a copy of all of

> his medical records? From docs, hospitals.......he should get all his

> lab reports, x-rays, any tests that have been done. Only he can get

> them unless he writes a letter and signs saying to give them to a

> family or friend. I got all the records from all 12 docs I was

> referred to. Most were just covering there ass in the final reports

> and turfing me off to another doc. But your friend is entitled to his

> medical records and should get them to hand carry to the next doctor.

> But always keep a set for his own use. If someone is able to go over

> them with him and explain what everything means, all the better.

>

> I wish you both much luck. It is so hard when you have to start

> reading your own reports and trying to interpret them, but I suggest

> to any patient, get your records because doctors are missing things so

> easily now. Also start that diary. Make a list of all your symptoms

> and problems. Try and go back as far as you can remember for any

> treatments. A little story starts to unfold of when and what is going

> on.

>

> Barb () Fitzmaurice - Michigan

> BLFITZMA@...

>

>

>

> | From: amycasca@... (Amy Casca)

> |

> | Barb,

> | No I wish that were the case.

> | It is regular chemo therapy normally used for cancer.

> | His dr`s just will not cnsider the possibility of Lyme because we

> are in

> | Wa state and because he has tested negative for lyme.

> | But tests were done by very lyme ILLITERATE Dr`s...:{

> | Anyway they think that a rare form of undetectable cancer is a more

> | plausible alternative to the possibility that he has Lyme..

> <snip>

[Guest guest]

Amy,

I'm so sorry about Les, and I have no idea what to say to help, except I

agree that chemo is an awful idea! I don't know about the antibiotics that

you would have on hand for animals, but I used to work for a vet, and

animals do get the same diseases and treatments as humans quite frequently.

I would just be worried about the dose. Has Less ever gotten an MRI or

SPECT? Seems to me that he either is very seriously ill with Lyme and worse

than most due to know treatment, or like someone else said, MS. I would

definitely get a new doctor. But can you at least print some articles about

Lyme to read to him. Maybe if he recognizes the symptoms he'll realize how

drastic chemo is and try one more time to get another opinion. Good luck. I

will keep you and Les in my prayers.

Vicki

Re: [Lyme-aid] Help

From: amycasca@... (Amy Casca)

,

My friends name is Les..

I think the chemo idea sounds very irresponsible,without the presence of

cancer.

The doc says if it is lyme,the chemo would help that also...

I have done alot of research on the internet about lyme,and NOWHERE does

anyone make mention of chemo??

I went and saw him again last night and it was so heartbreaking....

He seems to have gotton worse in just the last few days.

His very worst complaint is constant dizziness and he says that

everything moves around,like being in an earthquake,24 hrs a day..We are

begging him to just say no top the chemo,but the Drs have told him this

is his last hope basically...

I dont know why they won`t just try the antibiotics and see...

I would see that as a much more prudent step than chemo.

But he has been laying there so long he is willing to do anything.

I read somewhere that some people are getting their antibiotics from Vet

suppy and treating themselves.

We are horse people,Les also..

And him and my husband said they would even try that.They are both very

used to doctoring the animals and could give the shots..

I think this is a very bad idea!!

I told them I will not give them the name of the drugs to do

that,(neither know enough about the comp. to find for themselves,and Les

cannot see the T.V screen let alone read the small print of the

computer}}but I can see the desperation.

And how much crazier than chemo therepy is that???

I am due to have a baby on Oct 10th so I am worried about Les during

that time..

If anyone will write him a letter,I will PROMISE to take it directly to

him and read it,I think it would mean alot to him..

Thanks,here I go crying again so I will close for now..

Amy

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[Guest guest]

That's a scary thought, makes me wonder......

Vicki

Re: [Lyme-aid] help

>From: <swsftwtx@...>

>

>I'm willing to bet that the insurance companies are

>okaying the much more expensive and potentially

>deadly chemo treatment too! If they can shut us up

>they can kill us off since we don't have great immune

>systems anyway!

>

>J & M McCoy wrote:

>

>> From: " J & M McCoy " <mlmccoy@...>

>>

>> Margie,

>> This list is made up of good, caring souls like you who will take the

>> time to copy and paste the relevant sites to help someone in need.

Thanks

>> so much for giving this info to Amy for her friend, I have written to

Rita

>> Stanley, West Coast support group leader, she says Washington State is

one

>> of the worst states to contract this disease, it seems Amy's poor friend

>> will have to go out of state to seek treatment. Rita says she is hearing

>> more and more doctors offering chemo treatment, and she cannot believe

that

>> it would come to that. She said she was hoping it was a hoax! It makes

no

>> sense to offer such a tough drug as chemo, when abx are so readily

>> available.

>

>

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

>/archives.cgi/

>/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]

Vicki,

Yes I have brought TONS of articles about Lyme down and read to him..

He finally called the doc this morning and cancelled the chemo..

Wait until you hear this...

When he questioned him exactly why they would be trying to treat him for

cancer that he does not have,the doc said well we aren`t..

So Les said why were you going to do chemo?

Doc says,they think possibly his immune system is attacking his

brain,but they aren`t sure why they think that,just that nothing else

seems to be a possibility..

I really really feel like screaming....

No No trial for Lyme or anything,he told them he counted the

symptoms{for lyme} off the checklist and has/had 31 out of 32..

No abx for lyme but maybe for some unknown reason his immune system is

attacking his brain,so a good idea is to knock it out with chemo....Now

I am just mad and venting sorry guys but this is beyond

stupidity?????????????????

Yes they tested and tested for MS,they say no...

I really feel like banging my head against the wall...as stupid as that

sounds..that is what this feels like...

We are looking for another doc...

This is crazy..

[Guest guest]

In a message dated 9/20/99 5:38:04 PM Eastern Daylight Time,

amycasca@... writes:

<< Vicki,

Yes I have brought TONS of articles about Lyme down and read to him..

He finally called the doc this morning and cancelled the chemo..

Wait until you hear this...

When he questioned him exactly why they would be trying to treat him for

cancer that he does not have,the doc said well we aren`t..

So Les said why were you going to do chemo?

Doc says,they think possibly his immune system is attacking his

brain,but they aren`t sure why they think that,just that nothing else

seems to be a possibility..

I really really feel like screaming....

No No trial for Lyme or anything,he told them he counted the

symptoms{for lyme} off the checklist and has/had 31 out of 32..

No abx for lyme but maybe for some unknown reason his immune system is

attacking his brain,so a good idea is to knock it out with chemo....Now

I am just mad and venting sorry guys but this is beyond

stupidity?????????????????

Yes they tested and tested for MS,they say no...

I really feel like banging my head against the wall...as stupid as that

sounds..that is what this feels like...

We are looking for another doc...

This is crazy..

>>

That guy should have his medical liscence revoked !! Just imagine his other

patients and what hes putting them through ! Scary thought. I'm so glad your

getting away from him.

GoodLuck to you guys.. Hang in , Don't give up !

Hugs

[Guest guest]

Amy,

You are so right, this is entirely crazy, and like someone else said,

CRIMINAL. Can he afford to find another doctor that is Lyme Literate? He is

lucky to have a friend like you, especially since your baby is due so soon.

Please try not to stress out too much, its not good for you. Keep fighting

and don't let him give up. I don't remember if I asked you this or not, but

has he been tested for Lyme, and if yes, has he been tested more than once

and at different labs? These tests are so unreliable, but at least if he got

a positive result or even borderline, maybe his doctor would at least try

antibiotics. I DON " t GET IT, how can chemo be better than JUST TRYING

antibiotics. I feel your rage and frustration, it took most of us a battle

to get treated. I went misdiagnosed for five years! Hang in there. My

prayers or with you both, and all of us here on the list.

Vicki

Re: [Lyme-aid] Help

From: amycasca@... (Amy Casca)

Vicki,

Yes I have brought TONS of articles about Lyme down and read to him..

He finally called the doc this morning and cancelled the chemo..

Wait until you hear this...

When he questioned him exactly why they would be trying to treat him for

cancer that he does not have,the doc said well we aren`t..

So Les said why were you going to do chemo?

Doc says,they think possibly his immune system is attacking his

brain,but they aren`t sure why they think that,just that nothing else

seems to be a possibility..

I really really feel like screaming....

No No trial for Lyme or anything,he told them he counted the

symptoms{for lyme} off the checklist and has/had 31 out of 32..

No abx for lyme but maybe for some unknown reason his immune system is

attacking his brain,so a good idea is to knock it out with chemo....Now

I am just mad and venting sorry guys but this is beyond

stupidity?????????????????

Yes they tested and tested for MS,they say no...

I really feel like banging my head against the wall...as stupid as that

sounds..that is what this feels like...

We are looking for another doc...

This is crazy..

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[Guest guest]

Hello everyone....

I just got back from spending the evening with Les and I have bad news..

Not to long after I talked to him this morning,the doc called back,and

said that the results from his 2nd set of Lyme tests had came back

negative.

Basically I told yoou so the first time..

He rammed it down his and his moms throat that he is a LYME

specialist!!!!!!!!!

And if the nest says negative,YOU DO NOT HAVE LYME!!!Basically, can you

understand that simple language???

This is your last hope and you better take it,he went in and let them do

it....

He told me if he is going to die anyway that he might as well get it

over with then...

This has been a bad night all around,when my husband got home,he is so

mad...

He just feels like giving up on him...

All I know now is he is laying there shot up full of chemo,and this doc

is bent on killing his immune system,and Les is maybe sorry now that he

did it,but it sure is a crappy deal...

Sorry I don`t have something better to say....

You all have been so wonderful and I feel like after all the time that

many of you have spent to write etc...

That I have failed....

Just letting ya know...

What a bunch of bull this is!!!

I feel like going to this Dr myself or something..

[Guest guest]

Amy,

I'm so sorry to hear the bad news, Who knows, maybe the chemo will do

something. We can only pray. If I ever get to sleep tonight I'll say extra

prayers for Les. And for you and your family.

Hang in there.

Hugs to you all

Vicki

Re: [Lyme-aid] Help

From: amycasca@... (Amy Casca)

Hello everyone....

I just got back from spending the evening with Les and I have bad news..

Not to long after I talked to him this morning,the doc called back,and

said that the results from his 2nd set of Lyme tests had came back

negative.

Basically I told yoou so the first time..

He rammed it down his and his moms throat that he is a LYME

specialist!!!!!!!!!

And if the nest says negative,YOU DO NOT HAVE LYME!!!Basically, can you

understand that simple language???

This is your last hope and you better take it,he went in and let them do

it....

He told me if he is going to die anyway that he might as well get it

over with then...

This has been a bad night all around,when my husband got home,he is so

mad...

He just feels like giving up on him...

All I know now is he is laying there shot up full of chemo,and this doc

is bent on killing his immune system,and Les is maybe sorry now that he

did it,but it sure is a crappy deal...

Sorry I don`t have something better to say....

You all have been so wonderful and I feel like after all the time that

many of you have spent to write etc...

That I have failed....

Just letting ya know...

What a bunch of bull this is!!!

I feel like going to this Dr myself or something..

---

[Guest guest]

In a message dated 9/21/99 2:18:18 AM Eastern Daylight Time,

amycasca@... writes:

<< r I talked to him this morning,the doc called back,and

said that the results from his 2nd set of Lyme tests had came back

negative. >>

i would ask your friend to get copies of all the tests that were done...often

you can have lyme specific WB bands show up...but not enough to show a

positive per CDC requirements.....it is also possible the Dr.'s office did

not ask for all bands to be reported, so your friend may have had lyme

specific bands...but they were not listed on the result because noone asked

for them to be put there...often they only put negative...and leave off the

bands....B

[Guest guest]

In a message dated 9/21/99 2:18:18 AM Eastern Daylight Time,

amycasca@... writes:

<< All I know now is he is laying there shot up full of chemo >>

what medicine did this guy inject??? B

[Guest guest]

Thanks Vicki,

I hope you finally fell asleep..

I did finally..On the couch..

But now I am up again..Oh well,I am going to try to make to the bedroom!

You know this has got to be the nicest list out there...

IWish there was something I could do for the rest of ya!!

You guys are really great..

God Bless..

Amy

[Guest guest]

Plus the fact that the CDC left to Lyme specific

bands off the acceptable list of bands being

reported for positive Western Blot. Someone

correct me if I " m wrong on this part. It's very

difficult to get the supporting testing to be positive

as it's skewed to not reflect positive results. And,

the lab selected is very important indeed. The

govt. checked 2 times numerous labs sending all

specimens from known Lyme positive person, and

over half returned negative findings. IGeneX has

a web site address and there are several other good

labs with excellent scientific procedures that you can

use too.

BratDet@... wrote:

> From: BratDet@...

>

> In a message dated 9/21/99 2:18:18 AM Eastern Daylight Time,

> amycasca@... writes:

>

> << r I talked to him this morning,the doc called back,and

> said that the results from his 2nd set of Lyme tests had came back

> negative. >>

> i would ask your friend to get copies of all the tests that were done...often

> you can have lyme specific WB bands show up...but not enough to show a

> positive per CDC requirements.....it is also possible the Dr.'s office did

> not ask for all bands to be reported, so your friend may have had lyme

> specific bands...but they were not listed on the result because noone asked

> for them to be put there...often they only put negative...and leave off the

> bands....B

>

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

> /archives.cgi/

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[Guest guest]

Dear Amy: I'm sorry to hear about Les. But, don't get yourself

stressed over this. It's his life and he's got to do what he thinks is

right, even if we all know it isn't. And, who knows? Maybe he'll hit

upon a new cure for lyme disease!! Nothing else really works for the

rest of us, so maybe he'll benefit us all.

Lovette

[Guest guest]

Amy,

Maybe he doesn't have Lyme but clearly finding another doctor who is

more communcative and more willing to look harder for answers is

appropriate. Also, antibiotics can knock out a number of different hard

to diagnose illnesses. A doctor should consider this before starting

heavy chemo.

I'm praying for you all.

beth

SF, CA

Re: [Lyme-aid] Help

> From: amycasca@... (Amy Casca)

>

> Hello everyone....

> I just got back from spending the evening with Les and I have bad

news..

> Not to long after I talked to him this morning,the doc called back,and

> said that the results from his 2nd set of Lyme tests had came back

> negative.

> Basically I told yoou so the first time..

> He rammed it down his and his moms throat that he is a LYME

> specialist!!!!!!!!!

> And if the nest says negative,YOU DO NOT HAVE LYME!!!Basically, can

you

> understand that simple language???

> This is your last hope and you better take it,he went in and let them

do

> it....

> He told me if he is going to die anyway that he might as well get it

> over with then...

> This has been a bad night all around,when my husband got home,he is so

> mad...

> He just feels like giving up on him...

> All I know now is he is laying there shot up full of chemo,and this

doc

> is bent on killing his immune system,and Les is maybe sorry now that

he

> did it,but it sure is a crappy deal...

> Sorry I don`t have something better to say....

> You all have been so wonderful and I feel like after all the time that

> many of you have spent to write etc...

> That I have failed....

> Just letting ya know...

> What a bunch of bull this is!!!

> I feel like going to this Dr myself or something..

>

>

>

>

>

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[Guest guest]

Amy,

I second that suggestion. I had an equivocal WB test that upon close

examination by my Lyme literate doctor was positive (in the labs terms

not the CDC's). As everyone else already said it could also be another

spirochetal infection.

beth

i would ask your friend to get copies of all the tests that were

done...often

> you can have lyme specific WB bands show up...but not enough to show a

> positive per CDC requirements.....it is also possible the Dr.'s office

did

> not ask for all bands to be reported, so your friend may have had lyme

> specific bands...but they were not listed on the result because noone

asked

> for them to be put there...often they only put negative...and leave

off the

> bands....B

>

[Guest guest]

>

> Maybe he'll hit

> upon a new cure for lyme disease!! Nothing else really works for the

> rest of us, so maybe he'll benefit us all.

>

> Lovette

I disagree that nothing else really works for the rest of us. I know

that there are people on this list and elsewhere who have not improved

w/ abx's but there are plenty of people who, while they may not have

been cured, have been greatly improved by abx's. God bless us that there

is medication that does something to help some of us.

my 2 cents,

beth

>

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[Guest guest]

In a message dated 9/21/1999 8:01:23 PM Eastern Daylight Time,

smott@... writes:

<< I lose my profession and become one of the walking dead. >>

Lovette, I am very sad for you, it is bad enough for us adults to deal with

this disease, but surely worse on kids. I too am worried about leaving my

profession behind due to exhaustion, headaches, brain fog , the list goes on.

Reid, Sorry to hear about your loss, I have been too sick and tired to

respond to anything. Hugs and kisses to you.

Deb-va

[Guest guest]

beth Feldman wrote:

>

> From: beth Feldman <elsbeth@...>

>

> >

> > Maybe he'll hit

> > upon a new cure for lyme disease!! Nothing else really works for the

> > rest of us, so maybe he'll benefit us all.

> >

> > Lovette

>

> I disagree that nothing else really works for the rest of us. I know

> that there are people on this list and elsewhere who have not improved

> w/ abx's but there are plenty of people who, while they may not have

> been cured, have been greatly improved by abx's. God bless us that there

> is medication that does something to help some of us.

>

> my 2 cents,

>

> beth

> >

>

beth: Improvement is NOT a cure. I know this from my loss of my

life as I knew it, even with immediate treatment, and I know this as a

mother of 2 kids with lyme. Don't get me wrong - I am thrilled when I

take those baby steps - but I am continually angry that there is no cure

and I have to watch my children lose their childhood to this illness and

I lose my profession and become one of the walking dead.

Lovette