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That thought went through my mind too. Good for you to write.

At 10:03 PM 8/16/2006, you wrote:

>I just wrote a nasty gram to our Government here in Tennessee along

>with our newspaper and state health board. It is not fair that our

>Govener is tested and started on treatment before the results come

>back, yet the average person has to wait months or years to find a

>doctor to believe us. There was not even a mention of a " tick bite " ,

>so why are our LLMD's losing their practices for treating the average

>person? This makes me so angry. How many people have to suffer just

>because we are " average " ?

>

>

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Where do you live in Tennessee????? I am in the Memphis area, and I

have had doctor after doctor after doctor sarcastically chide me when I

asked for Lyme testing because " people in Tennessee can't get Lyme " .

Ha! Now, our governor gets ADMITTED TO THE HOSPITAL and given immediate

treatment for a SUSPECTED tick bite. Makes me sick to my stomach to

think of all that I have gone through with no answer in sight....

Just yesterday, my infectious disease doctor called to tell me that my

ELISA titer was not high enough to be considered positive (He said it

needs to be at least 1 and that mine was .5). He told me that in

combination with my Western Blot (done locally) only showing one

positive band, he is comfortable in eliminating Lyme as the culprit of

my problems. Funny how they can be " so sure " to tell you what it ISN'T

but when you ask what it is, they tell you things like, " well, your

labs are all fairly unimpressive " .

So, we are back at square one and on the hunt for an LLMD. We thought

we could get by without one becuase the ID told me he would do IV

Rocephin without a positive ELISA (said it in front of my husband), but

he is now changing his tune. Ugh.

I think I will write to the governor's office as well. Maybe I will

send them copies of all my medical charts, bills, letters from docs,

etc. showing the ridiculous ordeal I have had to go through for the

past three years just to be right back where I started out. Maybe he

can pull those strings for me as well...... Yeah, right!

>

> I just wrote a nasty gram to our Government here in Tennessee along

> with our newspaper and state health board. It is not fair that our

> Govener is tested and started on treatment before the results come

> back, yet the average person has to wait months or years to find a

> doctor to believe us. There was not even a mention of a " tick bite " ,

> so why are our LLMD's losing their practices for treating the average

> person? This makes me so angry. How many people have to suffer just

> because we are " average " ?

>

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I hear you. I think you should send them the records. I could go on with

my own stories, but you've heard them all before. I'm looking at a $90,000

IV bill if I want to be treated, and insurance will not pay a dime.

At 01:21 PM 8/17/2006, you wrote:

>Where do you live in Tennessee????? I am in the Memphis area, and I

>have had doctor after doctor after doctor sarcastically chide me when I

>asked for Lyme testing because " people in Tennessee can't get Lyme " .

>Ha! Now, our governor gets ADMITTED TO THE HOSPITAL and given immediate

>treatment for a SUSPECTED tick bite. Makes me sick to my stomach to

>think of all that I have gone through with no answer in sight....

>

>Just yesterday, my infectious disease doctor called to tell me that my

>ELISA titer was not high enough to be considered positive (He said it

>needs to be at least 1 and that mine was .5). He told me that in

>combination with my Western Blot (done locally) only showing one

>positive band, he is comfortable in eliminating Lyme as the culprit of

>my problems. Funny how they can be " so sure " to tell you what it ISN'T

>but when you ask what it is, they tell you things like, " well, your

>labs are all fairly unimpressive " .

>

>So, we are back at square one and on the hunt for an LLMD. We thought

>we could get by without one becuase the ID told me he would do IV

>Rocephin without a positive ELISA (said it in front of my husband), but

>he is now changing his tune. Ugh.

>

>I think I will write to the governor's office as well. Maybe I will

>send them copies of all my medical charts, bills, letters from docs,

>etc. showing the ridiculous ordeal I have had to go through for the

>past three years just to be right back where I started out. Maybe he

>can pull those strings for me as well...... Yeah, right!

>

>

> >

> > I just wrote a nasty gram to our Government here in Tennessee along

> > with our newspaper and state health board. It is not fair that our

> > Govener is tested and started on treatment before the results come

> > back, yet the average person has to wait months or years to find a

> > doctor to believe us. There was not even a mention of a " tick bite " ,

> > so why are our LLMD's losing their practices for treating the average

> > person? This makes me so angry. How many people have to suffer just

> > because we are " average " ?

> >

>

>

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We are in Madisonville now, but lived in ville when husband and daughter

were bitten. We had to go to Dr. J in N.C. to get my husband tested, diagnosed

and treated (although the 1 year treatment did not work well). I am convinced

that my daughter and I have it also yet can not get tested here. My daughter had

the " bullseye " I have not and have not had a tick attached, but have most of the

symptoms. I have however learned that if you drop the idea of Lyme to the

doctors, they are more willing to put you on antibiotics. Now I just go in

complaining about 1 or 2 problems. I am now on Cipro and Flagyll for a

" possible " gallbladder infection.

Anita

P.S.

I noticed there is nothing in the newspaper today about Gov. Bredesen

Whitney Koski <whitkoski@...> wrote:

Where do you live in Tennessee????? I am in the Memphis area, and I

have had doctor after doctor after doctor sarcastically chide me when I

asked for Lyme testing because " people in Tennessee can't get Lyme " .

Ha! Now, our governor gets ADMITTED TO THE HOSPITAL and given immediate

treatment for a SUSPECTED tick bite. Makes me sick to my stomach to

think of all that I have gone through with no answer in sight....

Just yesterday, my infectious disease doctor called to tell me that my

ELISA titer was not high enough to be considered positive (He said it

needs to be at least 1 and that mine was .5). He told me that in

combination with my Western Blot (done locally) only showing one

positive band, he is comfortable in eliminating Lyme as the culprit of

my problems. Funny how they can be " so sure " to tell you what it ISN'T

but when you ask what it is, they tell you things like, " well, your

labs are all fairly unimpressive " .

So, we are back at square one and on the hunt for an LLMD. We thought

we could get by without one becuase the ID told me he would do IV

Rocephin without a positive ELISA (said it in front of my husband), but

he is now changing his tune. Ugh.

I think I will write to the governor's office as well. Maybe I will

send them copies of all my medical charts, bills, letters from docs,

etc. showing the ridiculous ordeal I have had to go through for the

past three years just to be right back where I started out. Maybe he

can pull those strings for me as well...... Yeah, right!

>

> I just wrote a nasty gram to our Government here in Tennessee along

> with our newspaper and state health board. It is not fair that our

> Govener is tested and started on treatment before the results come

> back, yet the average person has to wait months or years to find a

> doctor to believe us. There was not even a mention of a " tick bite " ,

> so why are our LLMD's losing their practices for treating the average

> person? This makes me so angry. How many people have to suffer just

> because we are " average " ?

>

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

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Interesting glad I am not the only one fuming. My just turned 6 YO son

presented at an ER in CT this summer, pretty darn close to the town of LYME

and he had all the Ehrlichiosis symptoms (which I never knew about). I

personally suspected meningitis (due to stiff neck and neck pain combined

with high fever and headache) but when the Dr. said 'not meningitis' I said

" then it is Lyme " and I was laughed at. Dr. said he suspected strep throat

(there was no sore throat symptom) or mono. Blood was drawn for mono, Dr.

said " you ask for Lyme, I will do the test because you asked about it " . I

asked for meds for Lyme, was denied. Kid went home sick, remained with same

symptoms until I demanded he get meds for Lyme, 4 days later that happened.

In the end the bloods were positive for Lyme and Ehrlichiosis. And later I

read that 7-10% of E. patients who are untreated, especially kids and

elderly, die, yes die.

Another comment from that Dr. " we used to think all fever in summer was a

presentation of Lyme but now we find that it can be Mono or strep throat or

a viral infection or a viral adenoidal infection so we no longer

automatically treat summer fever as Lyme " . Remember this is Connecticut..

So why was this man ADMITTED to the hospital, not just seen by a Dr., but

admitted. I wonder if it is it because he is the Governor?

Will the CDC change their protocol to now admit to the hospital, every

person who presents with these symptoms???

Another thing that I didn't like about the article is that they left it a

little confusing. They mentioned it may be Ehrlichiosis but later said they

are watching for spots which may lead some to think that E. has spots which

it does not. Ehrlichiosis is the 'spotless " form of " rocky mountain spotted

fever " . So in other words if spots do appear then he might have " rocky

mountain spotted fever " : but if he has Ehrlichiosis, the 'spotless rocky

mountain spotted fever' then no spots will appear. Get it? Got it? Good.

Well the reporter left it unclear. Sigh.

I am fuming!!

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If any of you would like to write a letter to The Tennessean, the newspaper that

printed the article on the Governor and his immediate treatment, etc...you can

write them at:

****

Letters to the Editor (online form):

http://www.tennessean.com/apps/pbcs.dll/section?Category=SERVICES

(Click on " Send a Letter to the Editor " )

In case you did not read the original article I will paste it below:

http://www.tennessean.com/apps/pbcs.dll/article?

AID=/20060816/NEWS07/608160396/1024/NEWS

The Tennessean

Nashville TN

August 16, 2006

Bredesen in hospital, being tested for possible tick bite

==================

Published: Wednesday, 08/16/06

Gov. Phil Bredesen remained hospitalized Tuesday night after a

possible tick bite.

Because blood tests confirming such bites can take several days to

complete, " we don't know conclusively if it is a tick bite, " said

Lydia Lenker, Bredesen's press secretary.

The governor had been experiencing flulike symptoms, including a

severe headache and high fever, and went to Centennial Medical

Center on Monday night. Physicians there have been treating him with

antibiotics.

Lenker said she didn't know if Bredesen was bitten recently but said

he was feeling better.

Dr. Randall Ellis, an emergency room physician at Centennial, said

tick bites are often suspected when patients display flulike

symptoms in the summer or remember being bitten recently.

" These are very treatable illnesses, " said Ellis, who is not caring

for Bredesen. " People who receive antibiotics early on do very well. "

Dr. Schaffner, an infectious-disease specialist at

Vanderbilt University Medical Center, said if Bredesen was bitten by

an infected tick, chances are he has Rocky Mountain spotted fever or

ehrlichiosis.

Both illnesses begin with similar symptoms, headache and fever.

Those with Rocky Mountain spotted fever typically go on to develop a

rash of tiny, red spots.

" If left untreated for a long period of time, people can become more

seriously ill, but that doesn't usually happen, " Schaffner said,

noting that both infections are treated with the same antibiotics.

Lenker said Bredesen is " outside doing events all the time. When he

gets a chance to relax, he loves to fish. He's a sportsman. "

Bredesen's staff canceled three public events scheduled for

Wednesday, including a speech to state lawmakers in town for the

National Conference of State Legislatures. .

Published: Wednesday, 08/16/06

****

Letters to the Editor (online form):

http://www.tennessean.com/apps/pbcs.dll/section?Category=SERVICES

(Click on " Send a Letter to the Editor " )

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Also...forgot to mention, anyone wanting to write a letter to the editor about

the frustration of this situation and how difficult it is for the average person

to get ANY treatment, send a copy to our own Lyme newspaper, the Public Health

Alert!

Send your letters to the editor to the Public Health Alert at

editor@...

Thanks,

Dawn Irons, editor

www.publichealthalert.org

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