Re: Worn down by Lyme - MO

January 23, 2006

I'm sorry to hear of this woman's passing, but glad to know someone

gave lyme some press time in MO. I was bitten in Missouri and lyme

is rampant here. For some reason, very few persons meet the CDC

criteria but are quite ill. Dr. Masters has dubbed it STARI

disease.

cooky

>

> [RLL] Worn down by Lyme - MO

>

> http://www.columbiatribune.com/2006/Jan/20060121News005.asp

>

> Worn down by Lyme

> Family says disease caused death at 37.

>

> By GREG MILLER of the Tribune's staff

> Published Saturday, January 21, 2006

>

> Although Kym 's autopsy says she died of natural causes, her

family

> believes her death Monday while she was sleeping was a product of

Lyme

> disease, an illness she struggled with for eight years.

>

> " Anybody is going to wear down, " said Adam Boster, 's

brother-in-law.

> " I don't think we're meant to go forever in that stage. "

>

> lived with the severe pain and fatigue that accompanied the

disease

> she contracted in 1998. She detailed her physical torment and

battle with

> doctors who didn't understand her sickness in a 2001 letter her

mother found

> three days after her death at age 37.

>

> " This came from Kym, " said yesterday, showing the

letter to a

> reporter. " There were just so many people who couldn't understand

how a tick

> made her this sick. "

>

> In the United States, ticks are responsible for more human disease

than any

> other insect, the Missouri Department of Health and Senior

Services says.

> Lyme disease is just one of several illnesses that can result from

a tick's

> bite.

>

> The disease is caused by a bacterial agent, Borrelia burgdorferi.

Symptoms

> include fever, severe headache, muscle or joint aches and a red

rash around

> the site of the initial bite.

>

> Kym had worked as an activities director for a Fayette

nursing home.

> After she was bitten by a tick in 1998, she just picked it off and

kept

> walking, sister Steffany Boster said. It's unclear whether the

bite occurred

> on a trail in Boonville or in Columbia.

>

> " I don't think she ever gave it any thought, " Boster said.

>

> A few days later, a red rash developed around the bite.

>

> A Boonville doctor advised to apply an ointment and forget

about it.

> But she then began to experience extreme fatigue and had trouble

walking and

> speaking.

>

> " I knew something was really wrong, " wrote in the 2001

letter.

>

> 's Boonville doctor then diagnosed the problem as a stress

disorder.

>

> But as 's health declined, another doctor referred her to

Gordon

> Christensen, a physician and professor at the University of

> Missouri-Columbia. Nearly a year after the bite occurred,

Christensen

> diagnosed with Lyme disease - something he's only diagnosed

three

> times in his career.

>

> " It's a real challenge, " Christensen said. " We don't know a lot

about this. "

>

> In Missouri, there were 15 cases of Lyme disease reported in 2004,

said

> Yates, the vector-borne diseases program coordinator at the

Department

> of Health and Senior Services.

>

> " We really have a hard time tracking that, " Yates said

yesterday. " We

> suspect that there are other people who do become ill and are not

being

> counted. "

>

> Some cases of Lyme disease are incurable, but there is no

diagnostic test to

> determine the presence of the disease.

>

> For Christensen to make a strict diagnosis, he had to follow a

strict set of

> questions and symptoms laid out by the federal Centers for Disease

Control

> and Prevention. Making matters even more complicated, Borrelia

burgdorferi

> has never been isolated in a patient from Missouri.

>

> " By that definition, there's never been a case of Lyme disease in

Missouri, "

> Christensen said.

>

> To test for Borrelia burgdorferi, a blood sample must be taken to

see

> whether blood reacts to the illness's genetic material, but other

things can

> cause a reaction.

>

> " It's a big mess, " Christensen said of efforts to make such a

diagnosis.

>

> Christensen said these unknowns have divided most physicians into

one group

> that doesn't believe Lyme disease has occurred and treats the

symptoms and

> another group that aggressively treats the disease with

antibiotics.

>

> " I'm kind of right in the middle, " Christensen said. " I don't

think either

> group has got it right. "

>

> Confusion like this drove to type a one-page letter.

>

> " If you run into a doctor that says Lyme disease doesn't exist,

it's time to

> find another doctor, " said Adam Boster, 's brother-in-law.

>

> Yates said that of Missouri's 15 cases of Lyme disease in 2004,

three

> affected residents of Boone County. The state department of health

says the

> incidence of the disease was 2.21 per 100,000 in Boone County,

compared with

> the state average of 0.46 per 100,000.

>

> No confirmed Lyme disease case has been fatal.

>

> " It's a chronic illness, but it's not considered to be lethal, "

Christensen

> said. " It's the complications. "

>

> The CDC lists several tips to protect against ticks: Avoid tick-

infested

> areas, wear light-colored clothing, use tick repellent and perform

daily

> tick checks.

>

> If someone finds a tick embedded in his or her skin, the CDC Web

site

> recommends using fine-tipped tweezers to grab the tick close to

the skin and

> gently pull it straight up to keep its head intact with its body.

After

> handling the tick, wash hands, clean the bite and watch for signs

of

> illness.

>

> As 's family members mourn, they are preparing for a service

at 2 p.m.

> tomorrow at Memorial Funeral Home. They have asked for donations

to the

> National Lyme Disease Association because they know - through

's

> letter - how important Lyme disease education can be.

>

> " I hope that whoever reads this letter will have better

understanding of

> what it is like to live like this, " wrote. " Please, I need

all the

> support I can get because I am not getting better only worse. "

>

> -------------------------------------------------------------------

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

>

> Reach Greg at (573) 815-1723 or gmiller@t...

>

January 23, 2006

cooky

where do youlive in mo

sarah

[RLL] Worn down by Lyme - MO

>

> http://www.columbiatribune.com/2006/Jan/20060121News005.asp

>

> Worn down by Lyme

> Family says disease caused death at 37.

>

> By GREG MILLER of the Tribune's staff

> Published Saturday, January 21, 2006

>

> Although Kym 's autopsy says she died of natural causes, her

family

> believes her death Monday while she was sleeping was a product of

Lyme

> disease, an illness she struggled with for eight years.

>

> " Anybody is going to wear down, " said Adam Boster, 's

brother-in-law.

> " I don't think we're meant to go forever in that stage. "

>

> lived with the severe pain and fatigue that accompanied the

disease

> she contracted in 1998. She detailed her physical torment and

battle with

> doctors who didn't understand her sickness in a 2001 letter her

mother found

> three days after her death at age 37.

>

> " This came from Kym, " said yesterday, showing the

letter to a

> reporter. " There were just so many people who couldn't understand

how a tick

> made her this sick. "

>

> In the United States, ticks are responsible for more human disease

than any

> other insect, the Missouri Department of Health and Senior

Services says.

> Lyme disease is just one of several illnesses that can result from

a tick's

> bite.

>

> The disease is caused by a bacterial agent, Borrelia burgdorferi.

Symptoms

> include fever, severe headache, muscle or joint aches and a red

rash around

> the site of the initial bite.

>

> Kym had worked as an activities director for a Fayette

nursing home.

> After she was bitten by a tick in 1998, she just picked it off and

kept

> walking, sister Steffany Boster said. It's unclear whether the

bite occurred

> on a trail in Boonville or in Columbia.

>

> " I don't think she ever gave it any thought, " Boster said.

>

> A few days later, a red rash developed around the bite.

>

> A Boonville doctor advised to apply an ointment and forget

about it.

> But she then began to experience extreme fatigue and had trouble

walking and

> speaking.

>

> " I knew something was really wrong, " wrote in the 2001

letter.

>

> 's Boonville doctor then diagnosed the problem as a stress

disorder.

>

> But as 's health declined, another doctor referred her to

Gordon

> Christensen, a physician and professor at the University of

> Missouri-Columbia. Nearly a year after the bite occurred,

Christensen

> diagnosed with Lyme disease - something he's only diagnosed

three

> times in his career.

>

> " It's a real challenge, " Christensen said. " We don't know a lot

about this. "

>

> In Missouri, there were 15 cases of Lyme disease reported in 2004,

said

> Yates, the vector-borne diseases program coordinator at the

Department

> of Health and Senior Services.

>

> " We really have a hard time tracking that, " Yates said

yesterday. " We

> suspect that there are other people who do become ill and are not

being

> counted. "

>

> Some cases of Lyme disease are incurable, but there is no

diagnostic test to

> determine the presence of the disease.

>

> For Christensen to make a strict diagnosis, he had to follow a

strict set of

> questions and symptoms laid out by the federal Centers for Disease

Control

> and Prevention. Making matters even more complicated, Borrelia

burgdorferi

> has never been isolated in a patient from Missouri.

>

> " By that definition, there's never been a case of Lyme disease in

Missouri, "

> Christensen said.

>

> To test for Borrelia burgdorferi, a blood sample must be taken to

see

> whether blood reacts to the illness's genetic material, but other

things can

> cause a reaction.

>

> " It's a big mess, " Christensen said of efforts to make such a

diagnosis.

>

> Christensen said these unknowns have divided most physicians into

one group

> that doesn't believe Lyme disease has occurred and treats the

symptoms and

> another group that aggressively treats the disease with

antibiotics.

>

> " I'm kind of right in the middle, " Christensen said. " I don't

think either

> group has got it right. "

>

> Confusion like this drove to type a one-page letter.

>

> " If you run into a doctor that says Lyme disease doesn't exist,

it's time to

> find another doctor, " said Adam Boster, 's brother-in-law.

>

> Yates said that of Missouri's 15 cases of Lyme disease in 2004,

three

> affected residents of Boone County. The state department of health

says the

> incidence of the disease was 2.21 per 100,000 in Boone County,

compared with

> the state average of 0.46 per 100,000.

>

> No confirmed Lyme disease case has been fatal.

>

> " It's a chronic illness, but it's not considered to be lethal, "

Christensen

> said. " It's the complications. "

>

> The CDC lists several tips to protect against ticks: Avoid tick-

infested

> areas, wear light-colored clothing, use tick repellent and perform

daily

> tick checks.

>

> If someone finds a tick embedded in his or her skin, the CDC Web

site

> recommends using fine-tipped tweezers to grab the tick close to

the skin and

> gently pull it straight up to keep its head intact with its body.

After

> handling the tick, wash hands, clean the bite and watch for signs

of

> illness.

>

> As 's family members mourn, they are preparing for a service

at 2 p.m.

> tomorrow at Memorial Funeral Home. They have asked for donations

to the

> National Lyme Disease Association because they know - through

's

> letter - how important Lyme disease education can be.

>

> " I hope that whoever reads this letter will have better

understanding of

> what it is like to live like this, " wrote. " Please, I need

all the

> support I can get because I am not getting better only worse. "

>

> -------------------------------------------------------------------

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

>

> Reach Greg at (573) 815-1723 or gmiller@t...

>

For up to date information about Lyme disease and the known co-infections

delivered to your email address see:

Robynns_Lyme_List/

January 23, 2006

Cooky,

What are drs using to treat STARI or Masters disease as I have heard it

also called? Perhaps people are not meeting CDC criteria because the

usual Lyme tests might not detect the particular strain of Bb that

causes STARI. Were you bitten by Lone Star tick? I have been bitten

twice by those in TN and wonder if I might have STARI.

>

I was bitten in Missouri and lyme

> is rampant here. For some reason, very few persons meet the CDC

> criteria but are quite ill. Dr. Masters has dubbed it STARI

> disease.

> cooky

January 23, 2006

Hi ,

I am now on the Kansas side of KC. I was bitten near Nevada MO

about 15 years ago after a few hundred ticks crawled off some

rabbits that were killed from hunting on our farm. I jokingly

called the place " tick hill, " and it turned out to be true.

cooky

> >

> > [RLL] Worn down by Lyme - MO

> >

> > http://www.columbiatribune.com/2006/Jan/20060121News005.asp

> >

> > Worn down by Lyme

> > Family says disease caused death at 37.

> >

> > By GREG MILLER of the Tribune's staff

> > Published Saturday, January 21, 2006

> >

> > Although Kym 's autopsy says she died of natural causes,

her

> family

> > believes her death Monday while she was sleeping was a product of

> Lyme

> > disease, an illness she struggled with for eight years.

> >

> > " Anybody is going to wear down, " said Adam Boster, 's

> brother-in-law.

> > " I don't think we're meant to go forever in that stage. "

> >

> > lived with the severe pain and fatigue that accompanied

the

> disease

> > she contracted in 1998. She detailed her physical torment and

> battle with

> > doctors who didn't understand her sickness in a 2001 letter her

> mother found

> > three days after her death at age 37.

> >

> > " This came from Kym, " said yesterday, showing the

> letter to a

> > reporter. " There were just so many people who couldn't understand

> how a tick

> > made her this sick. "

> >

> > In the United States, ticks are responsible for more human

disease

> than any

> > other insect, the Missouri Department of Health and Senior

> Services says.

> > Lyme disease is just one of several illnesses that can result

from

> a tick's

> > bite.

> >

> > The disease is caused by a bacterial agent, Borrelia burgdorferi.

> Symptoms

> > include fever, severe headache, muscle or joint aches and a red

> rash around

> > the site of the initial bite.

> >

> > Kym had worked as an activities director for a Fayette

> nursing home.

> > After she was bitten by a tick in 1998, she just picked it off

and

> kept

> > walking, sister Steffany Boster said. It's unclear whether the

> bite occurred

> > on a trail in Boonville or in Columbia.

> >

> > " I don't think she ever gave it any thought, " Boster said.

> >

> > A few days later, a red rash developed around the bite.

> >

> > A Boonville doctor advised to apply an ointment and forget

> about it.

> > But she then began to experience extreme fatigue and had trouble

> walking and

> > speaking.

> >

> > " I knew something was really wrong, " wrote in the 2001

> letter.

> >

> > 's Boonville doctor then diagnosed the problem as a stress

> disorder.

> >

> > But as 's health declined, another doctor referred her to

> Gordon

> > Christensen, a physician and professor at the University of

> > Missouri-Columbia. Nearly a year after the bite occurred,

> Christensen

> > diagnosed with Lyme disease - something he's only

diagnosed

> three

> > times in his career.

> >

> > " It's a real challenge, " Christensen said. " We don't know a lot

> about this. "

> >

> > In Missouri, there were 15 cases of Lyme disease reported in

2004,

> said

> > Yates, the vector-borne diseases program coordinator at the

> Department

> > of Health and Senior Services.

> >

> > " We really have a hard time tracking that, " Yates said

> yesterday. " We

> > suspect that there are other people who do become ill and are not

> being

> > counted. "

> >

> > Some cases of Lyme disease are incurable, but there is no

> diagnostic test to

> > determine the presence of the disease.

> >

> > For Christensen to make a strict diagnosis, he had to follow a

> strict set of

> > questions and symptoms laid out by the federal Centers for

Disease

> Control

> > and Prevention. Making matters even more complicated, Borrelia

> burgdorferi

> > has never been isolated in a patient from Missouri.

> >

> > " By that definition, there's never been a case of Lyme disease in

> Missouri, "

> > Christensen said.

> >

> > To test for Borrelia burgdorferi, a blood sample must be taken to

> see

> > whether blood reacts to the illness's genetic material, but other

> things can

> > cause a reaction.

> >

> > " It's a big mess, " Christensen said of efforts to make such a

> diagnosis.

> >

> > Christensen said these unknowns have divided most physicians into

> one group

> > that doesn't believe Lyme disease has occurred and treats the

> symptoms and

> > another group that aggressively treats the disease with

> antibiotics.

> >

> > " I'm kind of right in the middle, " Christensen said. " I don't

> think either

> > group has got it right. "

> >

> > Confusion like this drove to type a one-page letter.

> >

> > " If you run into a doctor that says Lyme disease doesn't exist,

> it's time to

> > find another doctor, " said Adam Boster, 's brother-in-law.

> >

> > Yates said that of Missouri's 15 cases of Lyme disease in 2004,

> three

> > affected residents of Boone County. The state department of

health

> says the

> > incidence of the disease was 2.21 per 100,000 in Boone County,

> compared with

> > the state average of 0.46 per 100,000.

> >

> > No confirmed Lyme disease case has been fatal.

> >

> > " It's a chronic illness, but it's not considered to be lethal, "

> Christensen

> > said. " It's the complications. "

> >

> > The CDC lists several tips to protect against ticks: Avoid tick-

> infested

> > areas, wear light-colored clothing, use tick repellent and

perform

> daily

> > tick checks.

> >

> > If someone finds a tick embedded in his or her skin, the CDC Web

> site

> > recommends using fine-tipped tweezers to grab the tick close to

> the skin and

> > gently pull it straight up to keep its head intact with its body.

> After

> > handling the tick, wash hands, clean the bite and watch for signs

> of

> > illness.

> >

> > As 's family members mourn, they are preparing for a

service

> at 2 p.m.

> > tomorrow at Memorial Funeral Home. They have asked for donations

> to the

> > National Lyme Disease Association because they know - through

> 's

> > letter - how important Lyme disease education can be.

> >

> > " I hope that whoever reads this letter will have better

> understanding of

> > what it is like to live like this, " wrote. " Please, I need

> all the

> > support I can get because I am not getting better only worse. "

> >

> > -----------------------------------------------------------------

--

> -------------

> >

> > Reach Greg at (573) 815-1723 or gmiller@t...

> >

>

> For up to date information about Lyme disease and the known co-

infections

> delivered to your email address see:

> Robynns_Lyme_List/

>

January 23, 2006

Hi ,

I have no idea what kind of tick I was bitten by. It was tiny and I

pulled off dozens and dozens of them many years ago on the farm and

on fishing trips. With regard to treatment protocols, I think they

are similar to other abx protocols for lyme. Dr. Masters asserts

that there are many different strains of lyme and STARI is one in

the spectrum of lyme. If you do a google search for " STARI lyme, "

you can find out more details. I noticed that the CDC even

acknowledges the existance of the disease.

be well,

cooky

> >

> I was bitten in Missouri and lyme

> > is rampant here. For some reason, very few persons meet the CDC

> > criteria but are quite ill. Dr. Masters has dubbed it STARI

> > disease.

> > cooky

>

January 24, 2006

Actually if we were all able to change the name of Lyme disease to

something else it would help our cause. The perception that Lyme

disease is an easily treated disease is very hard for us to fight.

If we changed the name we could give the newly named disease new

characteristics. For example if we changed the name to the new

bioterrorist disease infecting the nation called CID's (Chronic

Imparing Disease) we could easily explain all of the debilitating

symptoms and people would easily adopt this new disease as being

something that was life threatening and that we as a nation needed

to take action against.

It worked for Philip . We all know the black cloud that

surrounds the manufacturers of cigarettes. So in order to remove

that perception from their company they simply changed their name to

Altria. Altria sounds like an altruistic name for a company.

Almost over night they went from being the cancer causing company to

this new benevolent company with a bright future. Do we have any

Marketing types in the group?

Perception is reality. While this won't fool the CDC it may give us

a chance to sway public opinion onto our side.

Just a thought.

Be well,

> >

> I was bitten in Missouri and lyme

> > is rampant here. For some reason, very few persons meet the CDC

> > criteria but are quite ill. Dr. Masters has dubbed it STARI

> > disease.

> > cooky

>

January 24, 2006

Hi ,

I have thought this for a long time...we need to call it something

else besides LD. I hope that we will get better in the area of

diagnostics, but that will take time. I think most of us agree, we

don't care what it's called, just so we get better and are able to

function adaquately. I hate all the politics which surround this

disease. It's bad enough to have LD, and then see all the negative

press about folks like Drs. J who are doing their best to help. Why

the academics and practitioners can't let go of their egos and

cooperate is beyond me. I still don't have a firm grasp as to why

either camp is so polarized in their positions.

cooky

> > >

> > I was bitten in Missouri and lyme

> > > is rampant here. For some reason, very few persons meet the

CDC

> > > criteria but are quite ill. Dr. Masters has dubbed it STARI

> > > disease.

> > > cooky

> >

>

January 24, 2006

I agree but what would it be called? CLI? (chronic lyme Infection?) WBD?

( Burgdorferri Disease?) LIDS? (Lyme Immune Dysfunction Syndrome?)

Links

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The only person you are destined

to become is the person you decide to be.

~Ralph Waldo Emerson

-- [ ] Re: Worn down by Lyme - MO