Re: Lyme Literate Neurologist

[Guest guest]

Ann & Joe,

I am sorry to hear about your situation. I am in Canada and can not help you

finding a Doctor but I thought I might tell you that I was first diagnosed with

ALS. It took a Lyme Literate Infectious Disease Specialist to tell me it was

Lyme Disease. I encountered only large ego's and little help on my search from

the many, many neurologists I met along the way.

I am getting better. Slowly I am walking better and my speech has begun to get

better as well. I have a long road but at least I have a road to travel down.

A road I would not of had if I had stopped at the diagnosis given to me from my

neurologists.

Keep fighting and I pray that you find a Doctor who will help you!

Ann Prow <aprow@...> wrote:

We are now in urgent need of a Lyme Literate Neurologist since my husband is

having symptoms that could be Lyme or something else.

I am in Arizona and we are not against traveling, but it would be good if

there is someone out west - and I know that is a lot to ask for.

Anyone dealing with an ALS, Myasthenia Gravis or Parkinson's diagnosis that

has come down to Lyme, I would especially appreciate hearing from.

Thank you so much,

Ann & Joe in Arizona

[Guest guest]

have you had your husband tested for lymes using an igenex kit yet?

>

>

>

> We are now in urgent need of a Lyme Literate Neurologist since my

husband is

> having symptoms that could be Lyme or something else.

>

> I am in Arizona and we are not against traveling, but it would be

good if

> there is someone out west - and I know that is a lot to ask for.

>

> Anyone dealing with an ALS, Myasthenia Gravis or Parkinson's

diagnosis that

> has come down to Lyme, I would especially appreciate hearing from.

>

> Thank you so much,

> Ann & Joe in Arizona

>

>

[Guest guest]

Can one obtain an Igenex kit and where? Does this mean you can get

the kit and bring it to a commercial lab and they will draw the

blood and send it directly to Igenex?

>

> have you had your husband tested for lymes using an igenex kit yet?

[Guest guest]

www.igenex.com can help you with this. they can tell you what

physicians in your area order their kits. they will most likely be lyme

literate md's.

my aunt was diagnosed with als & as soon as i found out about igenex i

phoned them right away & found an md for her.

i was able to get her in a week after phoning the office. i feel much

better now that she is not just " seeing her neurologist " every month as

he diagnosed her with als so her visits with him are just routine check-

ups i guess you could say.

my aunt was bitten in the head by a tick 1 month before her slurred

speech started. also, she had just put a sick dog down whose muscles

were deteriorating. i believe in my heart my aunt has lymes.

good luck, with this type of sickness you have to work fast & stay

informed. noone out there in the medical world will tell you about the

connections with als/lymes. nor will they tell you about the people

that have reversed their symptoms. it hurts me as some dont find out

about anything until its too late.

there are alot of people out there who have been diagnosed with als

that later find they have lymes. if you would like to read about some,

please let me know as i spend about 85% of my day working on this.

it is always good to listen to others stories as they have been through

it already. these diagnosis seem to have time limits & if you can save

yourself some time & steps you might in turn be able to save a life.

much love, denise

> >

> > have you had your husband tested for lymes using an igenex kit yet?

>

[Guest guest]

if i were you ann, i would phone igenex & ask them for a physician in

your area that orders their kits.

then, i would phone the physician & explain the situation to them.

tell them that you would like to have your husband tested & that youw

ould like them to use the igenex kit.

they should be able to help get you started right away. you may have

to put up a fight to get things done quicker, but, the time factor is

very important to keep in the back of your head & helps me to stay

strong & disregard the unimportant stuff.

good luck, denise

>

>

>

> We are now in urgent need of a Lyme Literate Neurologist since my

husband is

> having symptoms that could be Lyme or something else.

>

> I am in Arizona and we are not against traveling, but it would be

good if

> there is someone out west - and I know that is a lot to ask for.

>

> Anyone dealing with an ALS, Myasthenia Gravis or Parkinson's

diagnosis that

> has come down to Lyme, I would especially appreciate hearing from.

>

> Thank you so much,

> Ann & Joe in Arizona

>

>

[Guest guest]

Thank you.

> > >

> > > have you had your husband tested for lymes using an igenex kit

yet?

> >

>

[Guest guest]

e mail off line for a doc in connecticut....an llmd neuro....the best there

is...

eric

ps by the way I had the als and alzheimers combo and it can be turned

around....the doc does not take insurence ...

Ann Prow <aprow@...> wrote:

I know I have asked before for this and I do not have all the info people

have so graciously sent me.....

I'll blame it on my Lyme Brain, so please excuse me and please help me.

We need to know of Lyme Literate Neurologists anywhere. My husband and I

live in Arizona but are willing to travel. It would be best if he/she takes

Medicare but if you don't know, I will call and find out. I want to consider

all that are out there.

My husband has ALS/Alzheimers type symptoms but has had Chronic Lyme for 40+

years. We went to a neurologist in Phoenix and do not trust his judgement

once he told me that 1 month of IV antibiotics would take care of Lyme.

I look forward to your replies - I get the digest, so please also respond to

my email at aprow@...

Thank you, in advance for any and all help you can be.

Ann & Joe Prow

[Guest guest]

Check your email *-)

[ ] Lyme Literate Neurologist

>

>

> I know I have asked before for this and I do not have all the info people

> have so graciously sent me.....

> I'll blame it on my Lyme Brain, so please excuse me and please help me.

>

> We need to know of Lyme Literate Neurologists anywhere. My husband and I

> live in Arizona but are willing to travel. It would be best if he/she

takes

> Medicare but if you don't know, I will call and find out. I want to

consider

> all that are out there.

>

> My husband has ALS/Alzheimers type symptoms but has had Chronic Lyme for

40+

> years. We went to a neurologist in Phoenix and do not trust his judgement

> once he told me that 1 month of IV antibiotics would take care of Lyme.

>

> I look forward to your replies - I get the digest, so please also respond

to

> my email at aprow@...

>

> Thank you, in advance for any and all help you can be.

>

> Ann & Joe Prow

>

>

[Guest guest]

Ann Prow wrote:

> I know I have asked before for this and I do not have all the info people

> have so graciously sent me.....

> I'll blame it on my Lyme Brain, so please excuse me and please help me.

I would appreciate it if all answers to this question were also sent me at

bluesky @ greennet.net (no spaces).

I've been hoping to find a Lyme Literate neurologist myself.

Thanks.

Deanna

[Guest guest]

Hi Deanna, If I knew where you live it would help My Neurologist lives in North

Central Texas. Bud

bluesky <bluesky@...> wrote: Ann Prow wrote:

> I know I have asked before for this and I do not have all the info people

> have so graciously sent me.....

> I'll blame it on my Lyme Brain, so please excuse me and please help me.

I would appreciate it if all answers to this question were also sent me at

bluesky @ greennet.net (no spaces).

I've been hoping to find a Lyme Literate neurologist myself.

Thanks.

Deanna

[Guest guest]

And here I thought mine in TX was the best? *-)

> e mail off line for a doc in connecticut....an llmd neuro....the best

there is...

> eric

> ps by the way I had the als and alzheimers combo and it can be turned

around....the doc does not take insurence ...

>

>

> Ann Prow <aprow@...> wrote:

>

>

> I know I have asked before for this and I do not have all the info people

> have so graciously sent me.....

> I'll blame it on my Lyme Brain, so please excuse me and please help me.

>

> We need to know of Lyme Literate Neurologists anywhere. My husband and I

> live in Arizona but are willing to travel. It would be best if he/she

takes

> Medicare but if you don't know, I will call and find out. I want to

consider

> all that are out there.

>

> My husband has ALS/Alzheimers type symptoms but has had Chronic Lyme for

40+

> years. We went to a neurologist in Phoenix and do not trust his judgement

> once he told me that 1 month of IV antibiotics would take care of Lyme.

>

> I look forward to your replies - I get the digest, so please also respond

to

> my email at aprow@...

>

> Thank you, in advance for any and all help you can be.

>

> Ann & Joe Prow

>

>

[Guest guest]

Dear Ann I see you live in Az. I am in north texas my neurologist treated me

for 30 day kefflex twice a day. I would have ck the az. Medical Ass. for a

dr..However yours does not sound unreasonable Bud

Ann Prow <aprow@...> wrote:

I know I have asked before for this and I do not have all the info people

have so graciously sent me.....

I'll blame it on my Lyme Brain, so please excuse me and please help me.

We need to know of Lyme Literate Neurologists anywhere. My husband and I

live in Arizona but are willing to travel. It would be best if he/she takes

Medicare but if you don't know, I will call and find out. I want to consider

all that are out there.

My husband has ALS/Alzheimers type symptoms but has had Chronic Lyme for 40+

years. We went to a neurologist in Phoenix and do not trust his judgement

once he told me that 1 month of IV antibiotics would take care of Lyme.

I look forward to your replies - I get the digest, so please also respond to

my email at aprow@...

Thank you, in advance for any and all help you can be.

Ann & Joe Prow

[Guest guest]

> If I knew where you live it would help My Neurologist lives in North Central

> Texas. Bud

Thanks. I'm in Massachusetts.

Deanna