Help in setting up your data base

[Guest guest]

Good Idea, but before you begin this wonderful, important adventure and

the great need for the information, I would definitely work in concert with

your daughter's LLMD and explain to him what you are wanting to do and get

his input as to the statistical time frames and intervals of getting the

data. This could very easily become a very important piece of medical

information, but you need to get the counsel of doctors that are LLMD's

because then all of the time, energy and effort will be set up properly, and

have valuable information that may be able to be used properly and maybe

even published in a medical journal. I know this information, because I have

already written a Master's thesis with statistics (which is what you are

attempting to create with your data base of information) and was working on

my doctorate in education, but all research and statistics are basically the

same, it is just the type of information gathered that is specific. If your

LLMD and other doctors do not seem interested, put your idea out to every

corner of the Lyme world and surely someone would be willing to use your

abilities to gather the data and input it for them! Keep us posted on your

progress! This is just the type of information that is needed to help the

medical community to see the possible patterns. One specific person I can

think of is DR.. Nicholson at www.immed.org or Dr.. Fallon at Columbia

University in NY. These two men are on the cutting edge of lyme disease and

if they could not use your talents and availability, then maybe they would

know someone who would use them. All of your questions would be answered by

the LLMD's that would help you get the proposal set up! Don't waste any

time, get some medical guidance and direction and then all you would have to

do is the follow-up for the doctors!

Also consider the age that the person was bit (if they knew)

age when the illness first began to manifest itself

illnesses that showed up prior to lyme onset

stage of lyme

tests that were done and results of those tests

other members in their family that have lyme

degree of illness

symptoms and degree of each symptom

Thanks for caring about others! By the by, have you and the rest of your

family been tested for lyme, even though you are not showing signs of

illness at this time?

[ ] Re: I'm trying to set up a data base

>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

>

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