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Re: Jill/Sara

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Hi Jill,

Certainly research into LD because I am sure you will find that you need

to find a Lyme literate doctor (LLD) to either confirm or eliminate LD

properly. Many doctors dismiss out of hand that LD can be so bad and

there are at least two different tests which can be used, only one of

which is apparently reasonably reliable. Dale on here was tested for LD

years ago but they messed up the test and it gave a false negative. It

was only when he got really bad that they retested and found he had it

after all, so spent several years suffering needlessly. Worth pursuing

for someone so young, especially if she has spent time in the bush eg.

bushwalking.

Dependent on what form of PT she is doing you possibly need to be

careful, although from what I know of Feldenkrais that sounds perfect.

Stretching is also great but repetitive type movements designed to build

muscles are considered a no-no by many. There is a school of thought

that says neurones have a finite number of times they can fire in

diseases like PLS so if you do those sort of repetitive exercises all

you are doing is causing them to die off earlier than they otherwise

would have. I don't think it is as simple as that but food for

thought.......

Jill Kirscher wrote:

> Thank you Aussie & for taking the time to respond to my email. Sara

> was tested for everything under the sun until they diagnosed her with PLS.

> She has not had any bacterial infections or viruses. They thought at first

> that they were looking for MS or cancer. Sara eventually ended up in a

> room

> with 28 doctors and they all were only positive it was not a stroke or

> cancer. Then a year later after 3 MRI’s & an EMG, the diagnosis was made.

> Her doctor is very sure it is PLS, but like Sara said, “ doctors aren’t

> always right”. So we are marching down the road of lots of PT. She is

> finding great success with Feldenkrais in the water. After therapy her

> body

> is straighter and she is more stable. I will ask about the LD, but I think

> they tested her for it already. Jill

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Hi Jill,

Certainly research into LD because I am sure you will find that you need

to find a Lyme literate doctor (LLD) to either confirm or eliminate LD

properly. Many doctors dismiss out of hand that LD can be so bad and

there are at least two different tests which can be used, only one of

which is apparently reasonably reliable. Dale on here was tested for LD

years ago but they messed up the test and it gave a false negative. It

was only when he got really bad that they retested and found he had it

after all, so spent several years suffering needlessly. Worth pursuing

for someone so young, especially if she has spent time in the bush eg.

bushwalking.

Dependent on what form of PT she is doing you possibly need to be

careful, although from what I know of Feldenkrais that sounds perfect.

Stretching is also great but repetitive type movements designed to build

muscles are considered a no-no by many. There is a school of thought

that says neurones have a finite number of times they can fire in

diseases like PLS so if you do those sort of repetitive exercises all

you are doing is causing them to die off earlier than they otherwise

would have. I don't think it is as simple as that but food for

thought.......

Jill Kirscher wrote:

> Thank you Aussie & for taking the time to respond to my email. Sara

> was tested for everything under the sun until they diagnosed her with PLS.

> She has not had any bacterial infections or viruses. They thought at first

> that they were looking for MS or cancer. Sara eventually ended up in a

> room

> with 28 doctors and they all were only positive it was not a stroke or

> cancer. Then a year later after 3 MRI’s & an EMG, the diagnosis was made.

> Her doctor is very sure it is PLS, but like Sara said, “ doctors aren’t

> always right”. So we are marching down the road of lots of PT. She is

> finding great success with Feldenkrais in the water. After therapy her

> body

> is straighter and she is more stable. I will ask about the LD, but I think

> they tested her for it already. Jill

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Guest guest

Hi Jill,

Certainly research into LD because I am sure you will find that you need

to find a Lyme literate doctor (LLD) to either confirm or eliminate LD

properly. Many doctors dismiss out of hand that LD can be so bad and

there are at least two different tests which can be used, only one of

which is apparently reasonably reliable. Dale on here was tested for LD

years ago but they messed up the test and it gave a false negative. It

was only when he got really bad that they retested and found he had it

after all, so spent several years suffering needlessly. Worth pursuing

for someone so young, especially if she has spent time in the bush eg.

bushwalking.

Dependent on what form of PT she is doing you possibly need to be

careful, although from what I know of Feldenkrais that sounds perfect.

Stretching is also great but repetitive type movements designed to build

muscles are considered a no-no by many. There is a school of thought

that says neurones have a finite number of times they can fire in

diseases like PLS so if you do those sort of repetitive exercises all

you are doing is causing them to die off earlier than they otherwise

would have. I don't think it is as simple as that but food for

thought.......

Jill Kirscher wrote:

> Thank you Aussie & for taking the time to respond to my email. Sara

> was tested for everything under the sun until they diagnosed her with PLS.

> She has not had any bacterial infections or viruses. They thought at first

> that they were looking for MS or cancer. Sara eventually ended up in a

> room

> with 28 doctors and they all were only positive it was not a stroke or

> cancer. Then a year later after 3 MRI’s & an EMG, the diagnosis was made.

> Her doctor is very sure it is PLS, but like Sara said, “ doctors aren’t

> always right”. So we are marching down the road of lots of PT. She is

> finding great success with Feldenkrais in the water. After therapy her

> body

> is straighter and she is more stable. I will ask about the LD, but I think

> they tested her for it already. Jill

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Not to sound stupid, but, what are the ways a human can contract Lyme Disease? I

thought it was through tick bites only

Re: Jill/Sara

To: PLS-FRIENDS

> Hi Jill,

>

> Certainly research into LD because I am sure you will find that

> you need

> to find a Lyme literate doctor (LLD) to either confirm or

> eliminate LD

> properly. Many doctors dismiss out of hand that LD can be so bad

> and

> there are at least two different tests which can be used, only one

> of

> which is apparently reasonably reliable. Dale on here was tested

> for LD

> years ago but they messed up the test and it gave a false

> negative. It

> was only when he got really bad that they retested and found he

> had it

> after all, so spent several years suffering needlessly. Worth

> pursuing

> for someone so young, especially if she has spent time in the bush

> eg.

> bushwalking.

>

> Dependent on what form of PT she is doing you possibly need to be

> careful, although from what I know of Feldenkrais that sounds

> perfect.

> Stretching is also great but repetitive type movements designed to

> build

> muscles are considered a no-no by many. There is a school of

> thought

> that says neurones have a finite number of times they can fire in

> diseases like PLS so if you do those sort of repetitive exercises

> all

> you are doing is causing them to die off earlier than they

> otherwise

> would have. I don't think it is as simple as that but food for

> thought.......

>

>

>

> Jill Kirscher wrote:

>

> > Thank you Aussie & for taking the time to respond to my

> email. Sara

> > was tested for everything under the sun until they diagnosed her

> with PLS.

> > She has not had any bacterial infections or viruses. They

> thought at first

> > that they were looking for MS or cancer. Sara eventually ended

> up in a

> > room

> > with 28 doctors and they all were only positive it was not a

> stroke or

> > cancer. Then a year later after 3 MRI’s & an EMG, the diagnosis

> was made.

> > Her doctor is very sure it is PLS, but like Sara said, “ doctors

> aren’t> always right”. So we are marching down the road of lots of

> PT. She is

> > finding great success with Feldenkrais in the water. After

> therapy her

> > body

> > is straighter and she is more stable. I will ask about the LD,

> but I think

> > they tested her for it already. Jill

>

>

>

>

>

>

>

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I believe that is correct but also believe that sometimes the person

bitten doesn't really even take much notice of them eg. thinking they

are just a mosquito bite or something. They don't always come up in the

telltale bulls-eye rash.

bthompson2@... wrote:

>Not to sound stupid, but, what are the ways a human can contract Lyme Disease?

I thought it was through tick bites only

>

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  • 3 weeks later...

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