Re: I think I have lyme disease and my dr won't listen. Please hel...

[Guest guest]

Dear ,

I would urge you to try to get to a LLMD as soon as possible. Where do you

live? The ELISA test misses more infected people than it identifies.

Susie

In a message dated 3/16/2011 11:04:11 P.M. Eastern Daylight Time,

heatherleeburns@... writes:

I was bitten by a tick Aug, 2008 on the back of my neck in southern

indiana. I got a circle rash that did not itch or hurt but was warm to the

touch.

I got sick about 3 weeks after with flu like symptoms. Around April of

2009 I was fired from my job for passing out and having a seizure. I feel

foggy all the time. My vitamin b12, iron, folic, vit. d all are low. My brain

swells, my lymph nodes swell constantly, I get circle rashes still, kinda

resembles ring worm but doesn't itch or spread. My kidney in the last year has

gotten lesions and I am now bleeding when I urinate. I forget everything

and feel stupid all the time. I have vision problems and sometimes have

hearing problems. I look like I am having a stroke when I have what I call

attacks (when my brain swells I guess) I get slurred speech when I have the

attacks. I recently started the tremors and muscle spasms.My ribs hurt, joints

hurt, muscles hurt. stomache problems. I have had every test known to man

all come back neg. I did have the test which came back neg. I still

think it could be lyme. Please help if you have any info. I am afraid if it

is not caught my kidney will get worse. Maybe someone can give me info on

an accurate test I can take to my Dr. to run. I am assuming I am in later

stage lyme. Thanks for listening and hopefully I can get some great advice.

[Guest guest]

i think the IDSA website has a list of lyme literate doctors. they usually

test through the igenex lab. unfortunately your story is very common. a

primary or even infectious disease dr. won't listen. also, most lyme dr.s do

not take insurance so you need to pay out of pocket but if you have

insurance that usually covers the Rx's that the lyme dr. writes. best wishes

On Thu, Mar 17, 2011 at 5:14 AM, <sdw1255@...> wrote:

>

>

> Dear ,

>

> I would urge you to try to get to a LLMD as soon as possible. Where do you

> live? The ELISA test misses more infected people than it identifies.

>

> Susie

>

>

> In a message dated 3/16/2011 11:04:11 P.M. Eastern Daylight Time,

> heatherleeburns@... writes:

>

> I was bitten by a tick Aug, 2008 on the back of my neck in southern

> indiana. I got a circle rash that did not itch or hurt but was warm to the

> touch.

> I got sick about 3 weeks after with flu like symptoms. Around April of

> 2009 I was fired from my job for passing out and having a seizure. I feel

> foggy all the time. My vitamin b12, iron, folic, vit. d all are low. My

> brain

> swells, my lymph nodes swell constantly, I get circle rashes still, kinda

> resembles ring worm but doesn't itch or spread. My kidney in the last year

> has

> gotten lesions and I am now bleeding when I urinate. I forget everything

> and feel stupid all the time. I have vision problems and sometimes have

> hearing problems. I look like I am having a stroke when I have what I call

> attacks (when my brain swells I guess) I get slurred speech when I have the

>

> attacks. I recently started the tremors and muscle spasms.My ribs hurt,

> joints

> hurt, muscles hurt. stomache problems. I have had every test known to man

> all come back neg. I did have the test which came back neg. I still

> think it could be lyme. Please help if you have any info. I am afraid if it

>

> is not caught my kidney will get worse. Maybe someone can give me info on

> an accurate test I can take to my Dr. to run. I am assuming I am in later

> stage lyme. Thanks for listening and hopefully I can get some great advice.

>

>

>

[Guest guest]

le, I'm so sorry to hear your story!

I too live in southern Ind., and have gotten Lymes.

I have many of the same symptoms, and a few others.

I would be glad to talk to you directly if you would like.

My e-mail is paulpatch@... ,please contact me if you have any questions at

all.

We can get through this!

Many blessings, .

>

>

> Dear ,

>

> I would urge you to try to get to a LLMD as soon as possible. Where do you

> live? The ELISA test misses more infected people than it identifies.

>

> Susie

>

>

> In a message dated 3/16/2011 11:04:11 P.M. Eastern Daylight Time,

> heatherleeburns@... writes:

>

> I was bitten by a tick Aug, 2008 on the back of my neck in southern

> indiana. I got a circle rash that did not itch or hurt but was warm to the

> touch.

> I got sick about 3 weeks after with flu like symptoms. Around April of

> 2009 I was fired from my job for passing out and having a seizure. I feel

> foggy all the time. My vitamin b12, iron, folic, vit. d all are low. My

> brain

> swells, my lymph nodes swell constantly, I get circle rashes still, kinda

> resembles ring worm but doesn't itch or spread. My kidney in the last year

> has

> gotten lesions and I am now bleeding when I urinate. I forget everything

> and feel stupid all the time. I have vision problems and sometimes have

> hearing problems. I look like I am having a stroke when I have what I call

> attacks (when my brain swells I guess) I get slurred speech when I have the

>

> attacks. I recently started the tremors and muscle spasms.My ribs hurt,

> joints

> hurt, muscles hurt. stomache problems. I have had every test known to man

> all come back neg. I did have the test which came back neg. I still

> think it could be lyme. Please help if you have any info. I am afraid if it

>

> is not caught my kidney will get worse. Maybe someone can give me info on

> an accurate test I can take to my Dr. to run. I am assuming I am in later

> stage lyme. Thanks for listening and hopefully I can get some great advice.

>

>

>

[Guest guest]

I thought the IDSA was on the opposite side of the Lyme controversy from

LLMDs. I'd check out the ILADs (International Lyme and Associated Diseases

Society) myself, if I were looking for an LLMD. There's another website

(name escapes me at the moment) which theoretically has an LLMD referral

service, but I could not get it to work, when I tried to see who else was

out there, some time ago.

On Thu, Mar 17, 2011 at 2:32 PM, le Handy <kndplus2@...> wrote:

> i think the IDSA website has a list of lyme literate doctors. they usually

> test through the igenex lab. unfortunately your story is very common. a

> primary or even infectious disease dr. won't listen. also, most lyme dr.s

> do

> not take insurance so you need to pay out of pocket but if you have

> insurance that usually covers the Rx's that the lyme dr. writes. best

> wishes

>

> On Thu, Mar 17, 2011 at 5:14 AM, <sdw1255@...> wrote:

>

> >

> >

> > Dear ,

> >

> > I would urge you to try to get to a LLMD as soon as possible. Where do

> you

> > live? The ELISA test misses more infected people than it identifies.

> >

> > Susie

> >

> >

> > In a message dated 3/16/2011 11:04:11 P.M. Eastern Daylight Time,

> > heatherleeburns@... writes:

> >

> > I was bitten by a tick Aug, 2008 on the back of my neck in southern

> > indiana. I got a circle rash that did not itch or hurt but was warm to

> the

> > touch.

> > I got sick about 3 weeks after with flu like symptoms. Around April of

> > 2009 I was fired from my job for passing out and having a seizure. I feel

> > foggy all the time. My vitamin b12, iron, folic, vit. d all are low. My

> > brain

> > swells, my lymph nodes swell constantly, I get circle rashes still, kinda

> > resembles ring worm but doesn't itch or spread. My kidney in the last

> year

> > has

> > gotten lesions and I am now bleeding when I urinate. I forget everything

> > and feel stupid all the time. I have vision problems and sometimes have

> > hearing problems. I look like I am having a stroke when I have what I

> call

> > attacks (when my brain swells I guess) I get slurred speech when I have

> the

> >

> > attacks. I recently started the tremors and muscle spasms.My ribs hurt,

> > joints

> > hurt, muscles hurt. stomache problems. I have had every test known to man

> > all come back neg. I did have the test which came back neg. I still

> > think it could be lyme. Please help if you have any info. I am afraid if

> it

> >

> > is not caught my kidney will get worse. Maybe someone can give me info on

> > an accurate test I can take to my Dr. to run. I am assuming I am in later

> > stage lyme. Thanks for listening and hopefully I can get some great

> advice.

> >

> >

> >

[Guest guest]

,

Are you thinking of Turn the Corner (turnthecorner.org)? You can send

them an email requesting a list of ILADs approved LLMDs in your area.

They are a very nice group of people.

________________________________

From: [mailto: ] On

Behalf Of Farhangi

Sent: Thursday, March 17, 2011 3:16 PM

Subject: Re: [ ] I think I have lyme disease and my dr won't

listen. Please hel...

I thought the IDSA was on the opposite side of the Lyme controversy from

LLMDs. I'd check out the ILADs (International Lyme and Associated

Diseases

Society) myself, if I were looking for an LLMD. There's another website

(name escapes me at the moment) which theoretically has an LLMD referral

service, but I could not get it to work, when I tried to see who else

was

out there, some time ago.

On Thu, Mar 17, 2011 at 2:32 PM, le Handy <kndplus2@...

<mailto:kndplus2%40gmail.com> > wrote:

> i think the IDSA website has a list of lyme literate doctors. they

usually

> test through the igenex lab. unfortunately your story is very common.

a

> primary or even infectious disease dr. won't listen. also, most lyme

dr.s

> do

> not take insurance so you need to pay out of pocket but if you have

> insurance that usually covers the Rx's that the lyme dr. writes. best

> wishes

>

> On Thu, Mar 17, 2011 at 5:14 AM, <sdw1255@...

<mailto:sdw1255%40aol.com> > wrote:

>

> >

> >

> > Dear ,

> >

> > I would urge you to try to get to a LLMD as soon as possible. Where

do

> you

> > live? The ELISA test misses more infected people than it identifies.

> >

> > Susie

> >

> >

> > In a message dated 3/16/2011 11:04:11 P.M. Eastern Daylight Time,

> > heatherleeburns@... <mailto:heatherleeburns%40>

writes:

> >

> > I was bitten by a tick Aug, 2008 on the back of my neck in southern

> > indiana. I got a circle rash that did not itch or hurt but was warm

to

> the

> > touch.

> > I got sick about 3 weeks after with flu like symptoms. Around April

of

> > 2009 I was fired from my job for passing out and having a seizure. I

feel

> > foggy all the time. My vitamin b12, iron, folic, vit. d all are low.

My

> > brain

> > swells, my lymph nodes swell constantly, I get circle rashes still,

kinda

> > resembles ring worm but doesn't itch or spread. My kidney in the

last

> year

> > has

> > gotten lesions and I am now bleeding when I urinate. I forget

everything

> > and feel stupid all the time. I have vision problems and sometimes

have

> > hearing problems. I look like I am having a stroke when I have what

I

> call

> > attacks (when my brain swells I guess) I get slurred speech when I

have

> the

> >

> > attacks. I recently started the tremors and muscle spasms.My ribs

hurt,

> > joints

> > hurt, muscles hurt. stomache problems. I have had every test known

to man

> > all come back neg. I did have the test which came back neg. I

still

> > think it could be lyme. Please help if you have any info. I am

afraid if

> it

> >

> > is not caught my kidney will get worse. Maybe someone can give me

info on

> > an accurate test I can take to my Dr. to run. I am assuming I am in

later

> > stage lyme. Thanks for listening and hopefully I can get some great

> advice.

> >

> >

> >

[Guest guest]

so sorry!!!! i meant ILADS. i will totally blame that one on lyme brain

On Thu, Mar 17, 2011 at 12:15 PM, Farhangi

<lesliefarhangi@...>wrote:

>

>

> I thought the IDSA was on the opposite side of the Lyme controversy from

> LLMDs. I'd check out the ILADs (International Lyme and Associated Diseases

> Society) myself, if I were looking for an LLMD. There's another website

> (name escapes me at the moment) which theoretically has an LLMD referral

> service, but I could not get it to work, when I tried to see who else was

> out there, some time ago.

>

>

>

>

> On Thu, Mar 17, 2011 at 2:32 PM, le Handy <kndplus2@...>

> wrote:

>

> > i think the IDSA website has a list of lyme literate doctors. they

> usually

> > test through the igenex lab. unfortunately your story is very common. a

> > primary or even infectious disease dr. won't listen. also, most lyme dr.s

> > do

> > not take insurance so you need to pay out of pocket but if you have

> > insurance that usually covers the Rx's that the lyme dr. writes. best

> > wishes

> >

> > On Thu, Mar 17, 2011 at 5:14 AM, <sdw1255@...> wrote:

> >

> > >

> > >

> > > Dear ,

> > >

> > > I would urge you to try to get to a LLMD as soon as possible. Where do

> > you

> > > live? The ELISA test misses more infected people than it identifies.

> > >

> > > Susie

> > >

> > >

> > > In a message dated 3/16/2011 11:04:11 P.M. Eastern Daylight Time,

> > > heatherleeburns@... writes:

> > >

> > > I was bitten by a tick Aug, 2008 on the back of my neck in southern

> > > indiana. I got a circle rash that did not itch or hurt but was warm to

> > the

> > > touch.

> > > I got sick about 3 weeks after with flu like symptoms. Around April of

> > > 2009 I was fired from my job for passing out and having a seizure. I

> feel

> > > foggy all the time. My vitamin b12, iron, folic, vit. d all are low. My

> > > brain

> > > swells, my lymph nodes swell constantly, I get circle rashes still,

> kinda

> > > resembles ring worm but doesn't itch or spread. My kidney in the last

> > year

> > > has

> > > gotten lesions and I am now bleeding when I urinate. I forget

> everything

> > > and feel stupid all the time. I have vision problems and sometimes have

> > > hearing problems. I look like I am having a stroke when I have what I

> > call

> > > attacks (when my brain swells I guess) I get slurred speech when I have

> > the

> > >

> > > attacks. I recently started the tremors and muscle spasms.My ribs hurt,

> > > joints

> > > hurt, muscles hurt. stomache problems. I have had every test known to

> man

> > > all come back neg. I did have the test which came back neg. I

> still

> > > think it could be lyme. Please help if you have any info. I am afraid

> if

> > it

> > >

> > > is not caught my kidney will get worse. Maybe someone can give me info

> on

> > > an accurate test I can take to my Dr. to run. I am assuming I am in

> later

> > > stage lyme. Thanks for listening and hopefully I can get some great

> > advice.

> > >

> > >

> > >