I'm trying to set up a data base

[Guest guest]

Good thinking Connie, that would be a great way to subcategorize each

group of lyme people! KC in TX

conniek <conniek@...> wrote:

< >

>Wow Sue!

>This is an enormous task you want to undertake......I would be willing to

>help in any way..........I too think that it is good to see various

>circumstances, treatments, delayed dx., types of dx, ........etc.........

>How about including those people in a remission state.......or those that

>have had remission states.....how long they lasted, if they continue to be

>in a " currently cured " state........and how many years it took to reach

that

>state, and their protocol......maybe I could do that end??

>

>I think it is a great idea..........but I'm not sure what exactly should be

>included in the data........but am willing to help........maybe the groups

>should be separated into Lyme, lyme and bab, lyme and bab and

>erlich...........

>So many variables.........hhmmmmmm

>Conniek nwnj

>

>Leave no stone unturned.......and ask questions!

[Guest guest]

Hi all,

There is such a wealth of information on this list and others--based on

everyone's personal experiences--that I've had trouble keeping it all

straight.

For a long time I've wanted to set up and maintain a data base, but I didn't

know how to begin. This Christmas, my daughter-in-law showed me how to use

an Excel spread sheet and enter data into it. And she showed me how to

e-mail the charts as an attachment. I am able to begin this project because

I am healthy. (It's my daughter who is sick.)

Initially I simply wanted to see if I could find any relationship between

treatment response and positive PCRs. But as I began to enter the data, it

seemed to me that there is a lot of other valuable information that I should

enter. Maybe it might lead to something that would help.

I have been able to get a good bit of data from lists and from personal

correspondence, but I need to go about it in a more organized way. (I'm a

Virgo.)

Here are my questions:

1) What information would be most helpful to have in a data base? (I would

be the ONLY person who would have the identities of people contributing the

data.)

2) Does it make sense for me to try to track the progress of a large number

of people? For example, every six months I could check with everyone in the

data base and ask them for certain basic information--e.g., 1) what

treatment have you had during the past six months, and 2) where are you on

a disability scale? If I did this for several years, I might be able to

provide the kind of long-term followup that's missing from most research

studies.

3) What would be the best disability scale to use? I like Bell's

scale, because it's fairly simple: self-rating from 0 (near death) to 100

(healthy), with numberical categories based on specific criteria. Does

anyone know where I could get the Karnovsky (?) scale, used in a lot of

research? (I've heard that it's not very good, though, for extremely

disabled people.) Or how about the SF-??, used in some Lyme research.

studies?

I'd appreciate any suggestions or encouragement, and hope I'm not " biting

off more than I can chew. "

Best,

Sue B.

upstate New York

[Guest guest]

This sounds like a good idea, Sue.

I think some relevant factors to consider might be:

age

gender

length of illness

coinfections

medications

type of tests

unusual symptoms (since we mostly share the common ones)

spouse and or family infection/transmission

lenth of treatments

levels of treatments

multiple treatments

labs tested at???

geography: (a) original infection ( current living

That's a few off the top of my foggy, groggy brain rith now.

Living in Faith,

> Hi all,

>

> There is such a wealth of information on this list and others--

based on

> everyone's personal experiences--that I've had trouble keeping it

all

> straight.

>

> For a long time I've wanted to set up and maintain a data base, but

I didn't

> know how to begin. This Christmas, my daughter-in-law showed me

how to use

> an Excel spread sheet and enter data into it. And she showed me

how to

> e-mail the charts as an attachment. I am able to begin this

project because

> I am healthy. (It's my daughter who is sick.)

>

> Initially I simply wanted to see if I could find any relationship

between

> treatment response and positive PCRs. But as I began to enter the

data, it

> seemed to me that there is a lot of other valuable information that

I should

> enter. Maybe it might lead to something that would help.

>

> I have been able to get a good bit of data from lists and from

personal

> correspondence, but I need to go about it in a more organized way.

(I'm a

> Virgo.)

>

> Here are my questions:

>

> 1) What information would be most helpful to have in a data base?

(I would

> be the ONLY person who would have the identities of people

contributing the

> data.)

>

> 2) Does it make sense for me to try to track the progress of a

large number

> of people? For example, every six months I could check with

everyone in the

> data base and ask them for certain basic information--e.g., 1) what

> treatment have you had during the past six months, and 2) where

are you on

> a disability scale? If I did this for several years, I might be

able to

> provide the kind of long-term followup that's missing from most

research

> studies.

>

> 3) What would be the best disability scale to use? I like

Bell's

> scale, because it's fairly simple: self-rating from 0 (near death)

to 100

> (healthy), with numberical categories based on specific criteria.

Does

> anyone know where I could get the Karnovsky (?) scale, used in a

lot of

> research? (I've heard that it's not very good, though, for

extremely

> disabled people.) Or how about the SF-??, used in some Lyme

research.

> studies?

>

> I'd appreciate any suggestions or encouragement, and hope I'm

not " biting

> off more than I can chew. "

>

> Best,

> Sue B.

> upstate New York

[Guest guest]

Wow Sue!

This is an enormous task you want to undertake......I would be willing to

help in any way..........I too think that it is good to see various

circumstances, treatments, delayed dx., types of dx, ........etc.........

How about including those people in a remission state.......or those that

have had remission states.....how long they lasted, if they continue to be

in a " currently cured " state........and how many years it took to reach that

state, and their protocol......maybe I could do that end??

I think it is a great idea..........but I'm not sure what exactly should be

included in the data........but am willing to help........maybe the groups

should be separated into Lyme, lyme and bab, lyme and bab and

erlich...........

So many variables.........hhmmmmmm

Conniek nwnj

Leave no stone unturned.......and ask questions!

[Guest guest]

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

From: <rhbailey@...>

> Hi all,

>

> There is such a wealth of information on this list and others--based on

> everyone's personal experiences--that I've had trouble keeping it all

> straight.

>

> For a long time I've wanted to set up and maintain a data base, but I

didn't

> know how to begin. This Christmas, my daughter-in-law showed me how to

use

> an Excel spread sheet and enter data into it. And she showed me how to

> e-mail the charts as an attachment. I am able to begin this project

because

> I am healthy. (It's my daughter who is sick.)

>

> Initially I simply wanted to see if I could find any relationship between

> treatment response and positive PCRs. But as I began to enter the data,

it

> seemed to me that there is a lot of other valuable information that I

should

> enter. Maybe it might lead to something that would help.

Is your daughter still refusing to treat her lyme despite her positive PCR?

Is this why you want to do this database or just for info sake?

Jen :-)

jen@... ~*~ http://munn.com/~jmunn/