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Re: California Lymies and the fallacy of numbers

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and Morningsong,

It's good to meet you. I agree, , that it would be great to have

some sort of contact for the Lyme patients in the West. I have a reporter

friend who very much wants to do a story on Lyme and our daughter here on

the Central Coast, but of course, her editor says we don't have Lyme here!

It's in my mind to start a support group in our area. It would be great to

have, and might ferret out local sufferers. Our Llmd has given me the name

of a man in Lompoc who supposedly was in touch with many. Finding time to

do these things is always the problem.

When I recently asked my daughter's Llmd if he had reported her case to the

CDC, his reply was that he could not because we don't know when and where

she contracted the disease. When I called our county's vector control

department to see how many cases of Lyme there were here I was told zero,

yet when I talk to doctors we come in contact with, and our pharmacist,

there are people out there. This leads me to believe that few if any cases

are reported. No wonder " There is no Lyme on the Central Coast " !

I am wondering how many unreported cases of Lyme there are in California,

and even in this group. Just making sure that all cases are reported so the

numbers go up could help the public understand that this is a very real

threat.

Have your two cases been reported? How many Lyme sufferers do you know of

in your areas?

All my best to you both! Carol

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In a message dated 4/16/04 3:39:16 PM Pacific Daylight Time,

suelymer97@... writes:

When I recently asked my daughter's Llmd if he had reported her case to the

CDC, his reply was that he could not because we don't know when and where

she contracted the disease. When I called our county's vector control

department to see how many cases of Lyme there were here I was told zero,

yet when I talk to doctors we come in contact with, and our pharmacist,

there are people out there. This leads me to believe that few if any cases

are reported. No wonder " There is no Lyme on the Central Coast " !

I have had the same experience when contacting people regarding the matter of

reporting and testing.

I was told by vector control that I live in a no lyme zone so to speak. I

followed the statement by asking if they had tested this are. The response was

no

the area where you live has never been tested.

Which set off another chain of events. CAll this person, who then says to

call this person....etc. with me ending up back to the original person who says

he doesn't have the authority to test in this area and that those other numbers

do. I gave up.

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In a message dated 4/16/04 11:04:26 AM Pacific Daylight Time,

cf@... writes:

and Morningsong,

It's good to meet you. I agree, , that it would be great to have

some sort of contact for the Lyme patients in the West. I have a reporter

friend who very much wants to do a story on Lyme and our daughter here on

the Central Coast, but of course, her editor says we don't have Lyme here!

I have had the same problem with the local paper. I continue to send them

articles in hope that they will print one sooner or later.

It's in my mind to start a support group in our area. It would be great to

have, and might ferret out local sufferers. Our Llmd has given me the name

of a man in Lompoc who supposedly was in touch with many. Finding time to

do these things is always the problem.

I wonder if it is the man who died of lyme...I think last year.

I have started a support group for this area. I advertised on the local cable

channel and in the paper.

The meetings are the first MOnday of the month at a local coffee shop. So

far, it has been me and the coffee. I am very low functioning so it is great to

know that I have been able to make it to all two meetings so far. I am easing

into this. HA!

When I recently asked my daughter's Llmd if he had reported her case to the

CDC, his reply was that he could not because we don't know when and where

she contracted the disease. When I called our county's vector control

department to see how many cases of Lyme there were here I was told zero,

yet when I talk to doctors we come in contact with, and our pharmacist,

there are people out there. This leads me to believe that few if any cases

are reported. No wonder " There is no Lyme on the Central Coast " !

I am wondering how many unreported cases of Lyme there are in California,

and even in this group. Just making sure that all cases are reported so the

numbers go up could help the public understand that this is a very real

threat.

I tried to report my case and have yet to succeed.

Have your two cases been reported? How many Lyme sufferers do you know of

in your areas?

That is a good question. There are a lot of people dx with CFS/fibro in my

area..too many. The local docs dx me with CFS/fibro...but I didn't accept that.

I changed primaries and was referred to a rheumotologist. He confirmed what I

thought. I don't have fibro and he didn't know what I had. He wanted me to

let him know when I found out. When I find out what his name was...I will let

him know.

I am still looking for a doctor who accepts my insurance and who will work

with my lyme specialist in order to treat this.

My lyme doc is good, but when it comes to choosing between eating or paying

for the doctor's visit...it is a tough call.

It would be great to go through the insurance on this.

All my best to you both! Carol

You too.

[

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This was sent to me from a good Lymie friend!

YES! I have Lyme, native CA & contracted it sexually via my hubby.

He " finally " tested +! I tested high IGG after almost 3 years of orals &

blood work was done during my 3rd month of IV doxy. Guess what? I tested

high + for Bb & Babesia.

Testing needs to be improved & blood supply does not test for Lyme. I

actually gave blood before I was dx... & I regret that I infected someone!

K in CA

RE: [ ] California Lymies and the fallacy of numbers

> and Morningsong,

>

>

>

> It's good to meet you. I agree, , that it would be great to have

> some sort of contact for the Lyme patients in the West. I have a reporter

> friend who very much wants to do a story on Lyme and our daughter here on

> the Central Coast, but of course, her editor says we don't have Lyme here!

> It's in my mind to start a support group in our area. It would be great

to

> have, and might ferret out local sufferers. Our Llmd has given me the

name

> of a man in Lompoc who supposedly was in touch with many. Finding time to

> do these things is always the problem.

>

>

>

> When I recently asked my daughter's Llmd if he had reported her case to

the

> CDC, his reply was that he could not because we don't know when and where

> she contracted the disease. When I called our county's vector control

> department to see how many cases of Lyme there were here I was told zero,

> yet when I talk to doctors we come in contact with, and our pharmacist,

> there are people out there. This leads me to believe that few if any

cases

> are reported. No wonder " There is no Lyme on the Central Coast " !

>

>

>

> I am wondering how many unreported cases of Lyme there are in California,

> and even in this group. Just making sure that all cases are reported so

the

> numbers go up could help the public understand that this is a very real

> threat.

>

>

>

> Have your two cases been reported? How many Lyme sufferers do you know

of

> in your areas?

>

>

>

> All my best to you both! Carol

>

>

>

>

>

>

>

>

>

>

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