Re: neuro symptoms/impatient health care providers

[Guest guest]

Blue  -

If you are in lyme treatment and seeing a good llmd then dont bother telling a

normal GP anything about your lyme symptoms......I talk to my llmd about

that.........if you are having other problems that need to get checked by a gp

then I only talk about that - like having problems with you womanly

stuff.........I have had to make a clear cut to what I go to my GP about and

when I go I do not talk about the lyme at all or even my meds that I am

on........I do not need to be treated like shit over and over so that is why I

do this.

Good luck and sometimes you can find a compassionate gp that gets it but most

can not.......

Diane

________________________________

From: " bluesky@... " <bluesky@...>

lyme-aid ; MaineLymeDisease

Sent: Sat, March 26, 2011 9:32:34 AM

Subject: [ ] neuro symptoms/impatient health care providers

 

I'm finding that my health care providers are reacting negatively to

my Lyme-related neurological difficulties and wonder if others here

have had similar experiences.

One way Lyme has damaged me is that my cognitive functioning can slow

down tremendously.

My intelligence is still very high but my brain often takes longer to

make the neural connections it seems.

If I'm having a poor brain day, I need people to slow down in

explaining things simply so the neural connections can take place.

It's not that I don't understand them, it's that I'm slow in

processing the info.

When someone asks me a question, I can be slow in answering. Not

because I don't understand the question, or don't have the answer.

It's that my brain needs more time now to shift from the present

conversation to a new one. It's like waiting for a slow regrouping

to move from one conversational context to the next.

In conversations, I sometimes have a slow time in getting the words

and thoughts in my brain down to my mouth to speak them.

In the fall I was seeing a physical therapist extensively.

When she'd ask me to describe the discomfort or immobility I'd

experienced since the last visit, if I didn't have a rapid, short

response, she'd keep asking me different versions of the question

and, thereby, preventing me from giving my answer. Alternatively,

she'd finish all my sentences for me. I would say " you're finishing

my sentences for me! " but got no response.

This week I had my third visit with someone I was hoping to have as a

primary care doctor.

When she walked into the room she told me that I shouldn't be giving

the physician's assistant who takes me vital signs all the details

that I'd given her; I should wait for the doctor to come in to list

the symptoms. Erm, then, why does the PA ask for the symptoms and

keep saying " anything else. " (and you know how many symptoms the

Lyme-afflicted can have at one moment in time)

As the doc was asking me questions about the symptoms I was having,

she then told me that she was asking questions that only required a

yes or no answer and that I didn't need to give her all the

information I was giving. It didn't feel gentle to me; and I've been

thinking of it ever since.

Geesh, even the simplest of questions can be confusing (to me).

" Do you get fevers? "

I really couldn't answer yes or no to that, so I explained that my

normal temperature is low, that sometimes with a Lyme flare it gets

higher and I go into a state that can only be described as " fever and

chills. " So, the doc explained that fever means maybe 99, but really

100 degrees or over.

How the heck was I supposed to know the answer?

I know that I am not the only one in the world who looks at a medical

questionnaire or a school exam and ponders over simple yes or no

questions with the thought " does it mean this or does it mean that? "

In many other situations, especially phone conversations, I have to

slow the other person down so I can function.

When getting info over the phone and I'm finding it takes a ton more

time than it used to for the info to get into my ears --> get

deciphered in my brain --> move from my brains to the nerves and

muscles of my hand so I can write the info on paper so that it will

later be legible. This can be as simple as writing an appointment

into my DayTimer and asking for the person to not go on with the

conversation so I can have a chance to write it down.

If a person is typing when they are talking to me on the phone, the

clacking of the keys can completely disrupt my ability to hear myself

think in order to talk to the person.

Help! This is affecting me in numerous areas of my life.

Who else has anything like this happen while engaging with other

people? What do you do about it?

I am feeling overwhelmed and deeply distressed by this and would

really appreciate some responses.

Thanks so much.

Blue

[Guest guest]

Are you being treated for Lyme currently? Everything I've read indicates

people get better (to some degree or other) once they are on antibiotics.

I would caution you -- we thought my son had neuro lyme, but he didn't get

better on antibiotics. We ended up taking him to a neurologist and he had

neuropsych testing. He was diagnosed with ADD (without going into all the

details, and there are many, I am comfortable with this diagnosis). He was

also found to have low coenzyme Q10 levels and has been feeling 100% better

since being on coq10.

I am certainly not saying you don't have Lyme. But since it is such a gray

area, it is important to make sure something else isnt' going on too. If it

is in the budget, a second opinion from Columbia Univ. Med. School's Lyme

Disease Center might be helpful for you.

On Sat, Mar 26, 2011 at 10:32 AM, <bluesky@...> wrote:

>

>

> I'm finding that my health care providers are reacting negatively to

> my Lyme-related neurological difficulties and wonder if others here

> have had similar experiences.

>

> One way Lyme has damaged me is that my cognitive functioning can slow

> down tremendously.

> My intelligence is still very high but my brain often takes longer to

> make the neural connections it seems.

>

> If I'm having a poor brain day, I need people to slow down in

> explaining things simply so the neural connections can take place.

> It's not that I don't understand them, it's that I'm slow in

> processing the info.

>

> When someone asks me a question, I can be slow in answering. Not

> because I don't understand the question, or don't have the answer.

> It's that my brain needs more time now to shift from the present

> conversation to a new one. It's like waiting for a slow regrouping

> to move from one conversational context to the next.

>

> In conversations, I sometimes have a slow time in getting the words

> and thoughts in my brain down to my mouth to speak them.

>

> In the fall I was seeing a physical therapist extensively.

> When she'd ask me to describe the discomfort or immobility I'd

> experienced since the last visit, if I didn't have a rapid, short

> response, she'd keep asking me different versions of the question

> and, thereby, preventing me from giving my answer. Alternatively,

> she'd finish all my sentences for me. I would say " you're finishing

> my sentences for me! " but got no response.

>

> This week I had my third visit with someone I was hoping to have as a

> primary care doctor.

> When she walked into the room she told me that I shouldn't be giving

> the physician's assistant who takes me vital signs all the details

> that I'd given her; I should wait for the doctor to come in to list

> the symptoms. Erm, then, why does the PA ask for the symptoms and

> keep saying " anything else. " (and you know how many symptoms the

> Lyme-afflicted can have at one moment in time)

>

> As the doc was asking me questions about the symptoms I was having,

> she then told me that she was asking questions that only required a

> yes or no answer and that I didn't need to give her all the

> information I was giving. It didn't feel gentle to me; and I've been

> thinking of it ever since.

>

> Geesh, even the simplest of questions can be confusing (to me).

>

> " Do you get fevers? "

>

> I really couldn't answer yes or no to that, so I explained that my

> normal temperature is low, that sometimes with a Lyme flare it gets

> higher and I go into a state that can only be described as " fever and

> chills. " So, the doc explained that fever means maybe 99, but really

> 100 degrees or over.

>

> How the heck was I supposed to know the answer?

> I know that I am not the only one in the world who looks at a medical

> questionnaire or a school exam and ponders over simple yes or no

> questions with the thought " does it mean this or does it mean that? "

>

> In many other situations, especially phone conversations, I have to

> slow the other person down so I can function.

>

> When getting info over the phone and I'm finding it takes a ton more

> time than it used to for the info to get into my ears --> get

> deciphered in my brain --> move from my brains to the nerves and

> muscles of my hand so I can write the info on paper so that it will

> later be legible. This can be as simple as writing an appointment

> into my DayTimer and asking for the person to not go on with the

> conversation so I can have a chance to write it down.

>

> If a person is typing when they are talking to me on the phone, the

> clacking of the keys can completely disrupt my ability to hear myself

> think in order to talk to the person.

>

> Help! This is affecting me in numerous areas of my life.

>

> Who else has anything like this happen while engaging with other

> people? What do you do about it?

>

> I am feeling overwhelmed and deeply distressed by this and would

> really appreciate some responses.

>

> Thanks so much.

>

> Blue

>

>

[Guest guest]

You might want to get tested for Babesia also. The fever and chills is a

definite Babesia symptom and is commonly carried by Lyme infected ticks.

Try to find a LLMD that is familiar with neuro symptoms. Most doctors are still

learning about this. I have neuro symptoms as well and can understand the

frustration.

arno

________________________________

From: " bluesky@... " <bluesky@...>

lyme-aid ; MaineLymeDisease

Sent: Sat, March 26, 2011 10:32:34 AM

Subject: [ ] neuro symptoms/impatient health care providers

I'm finding that my health care providers are reacting negatively to

my Lyme-related neurological difficulties and wonder if others here

have had similar experiences.

One way Lyme has damaged me is that my cognitive functioning can slow

down tremendously.

My intelligence is still very high but my brain often takes longer to

make the neural connections it seems.

If I'm having a poor brain day, I need people to slow down in

explaining things simply so the neural connections can take place.

It's not that I don't understand them, it's that I'm slow in

processing the info.

When someone asks me a question, I can be slow in answering. Not

because I don't understand the question, or don't have the answer.

It's that my brain needs more time now to shift from the present

conversation to a new one. It's like waiting for a slow regrouping

to move from one conversational context to the next.

In conversations, I sometimes have a slow time in getting the words

and thoughts in my brain down to my mouth to speak them.

In the fall I was seeing a physical therapist extensively.

When she'd ask me to describe the discomfort or immobility I'd

experienced since the last visit, if I didn't have a rapid, short

response, she'd keep asking me different versions of the question

and, thereby, preventing me from giving my answer. Alternatively,

she'd finish all my sentences for me. I would say " you're finishing

my sentences for me! " but got no response.

This week I had my third visit with someone I was hoping to have as a

primary care doctor.

When she walked into the room she told me that I shouldn't be giving

the physician's assistant who takes me vital signs all the details

that I'd given her; I should wait for the doctor to come in to list

the symptoms. Erm, then, why does the PA ask for the symptoms and

keep saying " anything else. " (and you know how many symptoms the

Lyme-afflicted can have at one moment in time)

As the doc was asking me questions about the symptoms I was having,

she then told me that she was asking questions that only required a

yes or no answer and that I didn't need to give her all the

information I was giving. It didn't feel gentle to me; and I've been

thinking of it ever since.

Geesh, even the simplest of questions can be confusing (to me).

" Do you get fevers? "

I really couldn't answer yes or no to that, so I explained that my

normal temperature is low, that sometimes with a Lyme flare it gets

higher and I go into a state that can only be described as " fever and

chills. " So, the doc explained that fever means maybe 99, but really

100 degrees or over.

How the heck was I supposed to know the answer?

I know that I am not the only one in the world who looks at a medical

questionnaire or a school exam and ponders over simple yes or no

questions with the thought " does it mean this or does it mean that? "

In many other situations, especially phone conversations, I have to

slow the other person down so I can function.

When getting info over the phone and I'm finding it takes a ton more

time than it used to for the info to get into my ears --> get

deciphered in my brain --> move from my brains to the nerves and

muscles of my hand so I can write the info on paper so that it will

later be legible. This can be as simple as writing an appointment

into my DayTimer and asking for the person to not go on with the

conversation so I can have a chance to write it down.

If a person is typing when they are talking to me on the phone, the

clacking of the keys can completely disrupt my ability to hear myself

think in order to talk to the person.

Help! This is affecting me in numerous areas of my life.

Who else has anything like this happen while engaging with other

people? What do you do about it?

I am feeling overwhelmed and deeply distressed by this and would

really appreciate some responses.

Thanks so much.

Blue

[Guest guest]

Hi

I have neuro lymes and I believe it. I have some of your difficulties. I had a

spect scan and Brain MRI and they both proved it. I am on antibiotics and I had

a good sign yesterday. I went for my annual eye exam and my vision has improved

tremendously. I told the opthamologist about the lymes and he thinks the

antibiotics helped my vision. I guess lymes of the brain can affect your vision

too.

My primary doesn't quite believe the dx but I do.

Jean

________________________________

From: Farhangi <lesliefarhangi@...>

Sent: Sat, March 26, 2011 10:43:38 AM

Subject: Re: [ ] neuro symptoms/impatient health care providers

Are you being treated for Lyme currently? Everything I've read indicates

people get better (to some degree or other) once they are on antibiotics.

I would caution you -- we thought my son had neuro lyme, but he didn't get

better on antibiotics. We ended up taking him to a neurologist and he had

neuropsych testing. He was diagnosed with ADD (without going into all the

details, and there are many, I am comfortable with this diagnosis). He was

also found to have low coenzyme Q10 levels and has been feeling 100% better

since being on coq10.

I am certainly not saying you don't have Lyme. But since it is such a gray

area, it is important to make sure something else isnt' going on too. If it

is in the budget, a second opinion from Columbia Univ. Med. School's Lyme

Disease Center might be helpful for you.

On Sat, Mar 26, 2011 at 10:32 AM, <bluesky@...> wrote:

>

>

> I'm finding that my health care providers are reacting negatively to

> my Lyme-related neurological difficulties and wonder if others here

> have had similar experiences.

>

> One way Lyme has damaged me is that my cognitive functioning can slow

> down tremendously.

> My intelligence is still very high but my brain often takes longer to

> make the neural connections it seems.

>

> If I'm having a poor brain day, I need people to slow down in

> explaining things simply so the neural connections can take place.

> It's not that I don't understand them, it's that I'm slow in

> processing the info.

>

> When someone asks me a question, I can be slow in answering. Not

> because I don't understand the question, or don't have the answer.

> It's that my brain needs more time now to shift from the present

> conversation to a new one. It's like waiting for a slow regrouping

> to move from one conversational context to the next.

>

> In conversations, I sometimes have a slow time in getting the words

> and thoughts in my brain down to my mouth to speak them.

>

> In the fall I was seeing a physical therapist extensively.

> When she'd ask me to describe the discomfort or immobility I'd

> experienced since the last visit, if I didn't have a rapid, short

> response, she'd keep asking me different versions of the question

> and, thereby, preventing me from giving my answer. Alternatively,

> she'd finish all my sentences for me. I would say " you're finishing

> my sentences for me! " but got no response.

>

> This week I had my third visit with someone I was hoping to have as a

> primary care doctor.

> When she walked into the room she told me that I shouldn't be giving

> the physician's assistant who takes me vital signs all the details

> that I'd given her; I should wait for the doctor to come in to list

> the symptoms. Erm, then, why does the PA ask for the symptoms and

> keep saying " anything else. " (and you know how many symptoms the

> Lyme-afflicted can have at one moment in time)

>

> As the doc was asking me questions about the symptoms I was having,

> she then told me that she was asking questions that only required a

> yes or no answer and that I didn't need to give her all the

> information I was giving. It didn't feel gentle to me; and I've been

> thinking of it ever since.

>

> Geesh, even the simplest of questions can be confusing (to me).

>

> " Do you get fevers? "

>

> I really couldn't answer yes or no to that, so I explained that my

> normal temperature is low, that sometimes with a Lyme flare it gets

> higher and I go into a state that can only be described as " fever and

> chills. " So, the doc explained that fever means maybe 99, but really

> 100 degrees or over.

>

> How the heck was I supposed to know the answer?

> I know that I am not the only one in the world who looks at a medical

> questionnaire or a school exam and ponders over simple yes or no

> questions with the thought " does it mean this or does it mean that? "

>

> In many other situations, especially phone conversations, I have to

> slow the other person down so I can function.

>

> When getting info over the phone and I'm finding it takes a ton more

> time than it used to for the info to get into my ears --> get

> deciphered in my brain --> move from my brains to the nerves and

> muscles of my hand so I can write the info on paper so that it will

> later be legible. This can be as simple as writing an appointment

> into my DayTimer and asking for the person to not go on with the

> conversation so I can have a chance to write it down.

>

> If a person is typing when they are talking to me on the phone, the

> clacking of the keys can completely disrupt my ability to hear myself

> think in order to talk to the person.

>

> Help! This is affecting me in numerous areas of my life.

>

> Who else has anything like this happen while engaging with other

> people? What do you do about it?

>

> I am feeling overwhelmed and deeply distressed by this and would

> really appreciate some responses.

>

> Thanks so much.

>

> Blue

>

>

[Guest guest]

blue,

i can totally relate, have had all those symptoms. thankfully they have

pretty much gone on antibiotics. what helped me tho is that i get a small

monthly calendar that i write each symptom every day. ex/ march 1st: slept 3

hrs. pain in hip, fuzzy brain.

i keep a record that way and then before my appt. i type out a list of my

symptoms, noting new ones, or ones that are more pronounced, ones that i

specifically want to address. or whatever it is i want to convey to my dr.

when i get to the office i DO NOT fill out their silly little boxes, i tell

them that my disease is outside the box. i do not answer their questions,

instead i request that they read my list and then ask me questions from

their. i do this as politely as possible but honestly if you have a dr. that

will not be bothered by veering from their protocol and actually using their

brains then you need to find another dr.

best wishes,

danielle

On Sat, Mar 26, 2011 at 7:32 AM, <bluesky@...> wrote:

>

>

> I'm finding that my health care providers are reacting negatively to

> my Lyme-related neurological difficulties and wonder if others here

> have had similar experiences.

>

> One way Lyme has damaged me is that my cognitive functioning can slow

> down tremendously.

> My intelligence is still very high but my brain often takes longer to

> make the neural connections it seems.

>

> If I'm having a poor brain day, I need people to slow down in

> explaining things simply so the neural connections can take place.

> It's not that I don't understand them, it's that I'm slow in

> processing the info.

>

> When someone asks me a question, I can be slow in answering. Not

> because I don't understand the question, or don't have the answer.

> It's that my brain needs more time now to shift from the present

> conversation to a new one. It's like waiting for a slow regrouping

> to move from one conversational context to the next.

>

> In conversations, I sometimes have a slow time in getting the words

> and thoughts in my brain down to my mouth to speak them.

>

> In the fall I was seeing a physical therapist extensively.

> When she'd ask me to describe the discomfort or immobility I'd

> experienced since the last visit, if I didn't have a rapid, short

> response, she'd keep asking me different versions of the question

> and, thereby, preventing me from giving my answer. Alternatively,

> she'd finish all my sentences for me. I would say " you're finishing

> my sentences for me! " but got no response.

>

> This week I had my third visit with someone I was hoping to have as a

> primary care doctor.

> When she walked into the room she told me that I shouldn't be giving

> the physician's assistant who takes me vital signs all the details

> that I'd given her; I should wait for the doctor to come in to list

> the symptoms. Erm, then, why does the PA ask for the symptoms and

> keep saying " anything else. " (and you know how many symptoms the

> Lyme-afflicted can have at one moment in time)

>

> As the doc was asking me questions about the symptoms I was having,

> she then told me that she was asking questions that only required a

> yes or no answer and that I didn't need to give her all the

> information I was giving. It didn't feel gentle to me; and I've been

> thinking of it ever since.

>

> Geesh, even the simplest of questions can be confusing (to me).

>

> " Do you get fevers? "

>

> I really couldn't answer yes or no to that, so I explained that my

> normal temperature is low, that sometimes with a Lyme flare it gets

> higher and I go into a state that can only be described as " fever and

> chills. " So, the doc explained that fever means maybe 99, but really

> 100 degrees or over.

>

> How the heck was I supposed to know the answer?

> I know that I am not the only one in the world who looks at a medical

> questionnaire or a school exam and ponders over simple yes or no

> questions with the thought " does it mean this or does it mean that? "

>

> In many other situations, especially phone conversations, I have to

> slow the other person down so I can function.

>

> When getting info over the phone and I'm finding it takes a ton more

> time than it used to for the info to get into my ears --> get

> deciphered in my brain --> move from my brains to the nerves and

> muscles of my hand so I can write the info on paper so that it will

> later be legible. This can be as simple as writing an appointment

> into my DayTimer and asking for the person to not go on with the

> conversation so I can have a chance to write it down.

>

> If a person is typing when they are talking to me on the phone, the

> clacking of the keys can completely disrupt my ability to hear myself

> think in order to talk to the person.

>

> Help! This is affecting me in numerous areas of my life.

>

> Who else has anything like this happen while engaging with other

> people? What do you do about it?

>

> I am feeling overwhelmed and deeply distressed by this and would

> really appreciate some responses.

>

> Thanks so much.

>

> Blue

>

>

[Guest guest]

My vision was better than average before Lyme. I was told that by Optometrists.

Said I had " fighter pilot vision " . Now I have floaters, distortions, and

sometimes have to wear glasses just to see the computer screen here. All in less

than two years time. 

I wonder if that will ever heal to any degree? 

>

>

> I'm finding that my health care providers are reacting negatively to

> my Lyme-related neurological difficulties and wonder if others here

> have had similar experiences.

>

> One way Lyme has damaged me is that my cognitive functioning can slow

> down tremendously.

> My intelligence is still very high but my brain often takes longer to

> make the neural connections it seems.

>

> If I'm having a poor brain day, I need people to slow down in

> explaining things simply so the neural connections can take place.

> It's not that I don't understand them, it's that I'm slow in

> processing the info.

>

> When someone asks me a question, I can be slow in answering. Not

> because I don't understand the question, or don't have the answer.

> It's that my brain needs more time now to shift from the present

> conversation to a new one. It's like waiting for a slow regrouping

> to move from one conversational context to the next.

>

> In conversations, I sometimes have a slow time in getting the words

> and thoughts in my brain down to my mouth to speak them.

>

> In the fall I was seeing a physical therapist extensively.

> When she'd ask me to describe the discomfort or immobility I'd

> experienced since the last visit, if I didn't have a rapid, short

> response, she'd keep asking me different versions of the question

> and, thereby, preventing me from giving my answer. Alternatively,

> she'd finish all my sentences for me. I would say " you're finishing

> my sentences for me! " but got no response.

>

> This week I had my third visit with someone I was hoping to have as a

> primary care doctor.

> When she walked into the room she told me that I shouldn't be giving

> the physician's assistant who takes me vital signs all the details

> that I'd given her; I should wait for the doctor to come in to list

> the symptoms. Erm, then, why does the PA ask for the symptoms and

> keep saying " anything else. " (and you know how many symptoms the

> Lyme-afflicted can have at one moment in time)

>

> As the doc was asking me questions about the symptoms I was having,

> she then told me that she was asking questions that only required a

> yes or no answer and that I didn't need to give her all the

> information I was giving. It didn't feel gentle to me; and I've been

> thinking of it ever since.

>

> Geesh, even the simplest of questions can be confusing (to me).

>

> " Do you get fevers? "

>

> I really couldn't answer yes or no to that, so I explained that my

> normal temperature is low, that sometimes with a Lyme flare it gets

> higher and I go into a state that can only be described as " fever and

> chills. " So, the doc explained that fever means maybe 99, but really

> 100 degrees or over.

>

> How the heck was I supposed to know the answer?

> I know that I am not the only one in the world who looks at a medical

> questionnaire or a school exam and ponders over simple yes or no

> questions with the thought " does it mean this or does it mean that? "

>

> In many other situations, especially phone conversations, I have to

> slow the other person down so I can function.

>

> When getting info over the phone and I'm finding it takes a ton more

> time than it used to for the info to get into my ears --> get

> deciphered in my brain --> move from my brains to the nerves and

> muscles of my hand so I can write the info on paper so that it will

> later be legible. This can be as simple as writing an appointment

> into my DayTimer and asking for the person to not go on with the

> conversation so I can have a chance to write it down.

>

> If a person is typing when they are talking to me on the phone, the

> clacking of the keys can completely disrupt my ability to hear myself

> think in order to talk to the person.

>

> Help! This is affecting me in numerous areas of my life.

>

> Who else has anything like this happen while engaging with other

> people? What do you do about it?

>

> I am feeling overwhelmed and deeply distressed by this and would

> really appreciate some responses.

>

> Thanks so much.

>

> Blue

> 

>

[Guest guest]

it is so frustrating that your primary doesn't believe you. when mine

questioned me, i asked her what in the world could i have then that the

antibiotics are helping so much with? she couldn't answer me since she

tested me for everything under the sun. i told her even if you don't believe

i have lyme, i am living proof that my regime is improving my quality of

life and isn't that what " practicing medicine is all about " ....still tho i

am brushed off

On Sat, Mar 26, 2011 at 8:32 AM, Downey <jeandwny@...> wrote:

>

>

> Hi

> I have neuro lymes and I believe it. I have some of your difficulties. I

> had a

> spect scan and Brain MRI and they both proved it. I am on antibiotics and I

> had

> a good sign yesterday. I went for my annual eye exam and my vision has

> improved

> tremendously. I told the opthamologist about the lymes and he thinks the

> antibiotics helped my vision. I guess lymes of the brain can affect your

> vision

> too.

>

> My primary doesn't quite believe the dx but I do.

> Jean

>

> ________________________________

> From: Farhangi <lesliefarhangi@...>

>

> Sent: Sat, March 26, 2011 10:43:38 AM

> Subject: Re: [ ] neuro symptoms/impatient health care providers

>

> Are you being treated for Lyme currently? Everything I've read indicates

> people get better (to some degree or other) once they are on antibiotics.

>

> I would caution you -- we thought my son had neuro lyme, but he didn't get

> better on antibiotics. We ended up taking him to a neurologist and he had

> neuropsych testing. He was diagnosed with ADD (without going into all the

> details, and there are many, I am comfortable with this diagnosis). He was

> also found to have low coenzyme Q10 levels and has been feeling 100% better

> since being on coq10.

>

> I am certainly not saying you don't have Lyme. But since it is such a gray

> area, it is important to make sure something else isnt' going on too. If it

> is in the budget, a second opinion from Columbia Univ. Med. School's Lyme

> Disease Center might be helpful for you.

>

>

>

>

> On Sat, Mar 26, 2011 at 10:32 AM, <bluesky@...> wrote:

>

> >

> >

> > I'm finding that my health care providers are reacting negatively to

> > my Lyme-related neurological difficulties and wonder if others here

> > have had similar experiences.

> >

> > One way Lyme has damaged me is that my cognitive functioning can slow

> > down tremendously.

> > My intelligence is still very high but my brain often takes longer to

> > make the neural connections it seems.

> >

> > If I'm having a poor brain day, I need people to slow down in

> > explaining things simply so the neural connections can take place.

> > It's not that I don't understand them, it's that I'm slow in

> > processing the info.

> >

> > When someone asks me a question, I can be slow in answering. Not

> > because I don't understand the question, or don't have the answer.

> > It's that my brain needs more time now to shift from the present

> > conversation to a new one. It's like waiting for a slow regrouping

> > to move from one conversational context to the next.

> >

> > In conversations, I sometimes have a slow time in getting the words

> > and thoughts in my brain down to my mouth to speak them.

> >

> > In the fall I was seeing a physical therapist extensively.

> > When she'd ask me to describe the discomfort or immobility I'd

> > experienced since the last visit, if I didn't have a rapid, short

> > response, she'd keep asking me different versions of the question

> > and, thereby, preventing me from giving my answer. Alternatively,

> > she'd finish all my sentences for me. I would say " you're finishing

> > my sentences for me! " but got no response.

> >

> > This week I had my third visit with someone I was hoping to have as a

> > primary care doctor.

> > When she walked into the room she told me that I shouldn't be giving

> > the physician's assistant who takes me vital signs all the details

> > that I'd given her; I should wait for the doctor to come in to list

> > the symptoms. Erm, then, why does the PA ask for the symptoms and

> > keep saying " anything else. " (and you know how many symptoms the

> > Lyme-afflicted can have at one moment in time)

> >

> > As the doc was asking me questions about the symptoms I was having,

> > she then told me that she was asking questions that only required a

> > yes or no answer and that I didn't need to give her all the

> > information I was giving. It didn't feel gentle to me; and I've been

> > thinking of it ever since.

> >

> > Geesh, even the simplest of questions can be confusing (to me).

> >

> > " Do you get fevers? "

> >

> > I really couldn't answer yes or no to that, so I explained that my

> > normal temperature is low, that sometimes with a Lyme flare it gets

> > higher and I go into a state that can only be described as " fever and

> > chills. " So, the doc explained that fever means maybe 99, but really

> > 100 degrees or over.

> >

> > How the heck was I supposed to know the answer?

> > I know that I am not the only one in the world who looks at a medical

> > questionnaire or a school exam and ponders over simple yes or no

> > questions with the thought " does it mean this or does it mean that? "

> >

> > In many other situations, especially phone conversations, I have to

> > slow the other person down so I can function.

> >

> > When getting info over the phone and I'm finding it takes a ton more

> > time than it used to for the info to get into my ears --> get

> > deciphered in my brain --> move from my brains to the nerves and

> > muscles of my hand so I can write the info on paper so that it will

> > later be legible. This can be as simple as writing an appointment

> > into my DayTimer and asking for the person to not go on with the

> > conversation so I can have a chance to write it down.

> >

> > If a person is typing when they are talking to me on the phone, the

> > clacking of the keys can completely disrupt my ability to hear myself

> > think in order to talk to the person.

> >

> > Help! This is affecting me in numerous areas of my life.

> >

> > Who else has anything like this happen while engaging with other

> > people? What do you do about it?

> >

> > I am feeling overwhelmed and deeply distressed by this and would

> > really appreciate some responses.

> >

> > Thanks so much.

> >

> > Blue

> >

> >

>

>

[Guest guest]

Hi! I just wanted to say that lots of people (who don't have Lyme) have symptoms

similar to this- I would say that almost everyone I know is having trouble

concentrating, processing information, remembering simple things etc. I realise

this is a common Lyme symptom (I have Lyme), but it is also a very common

" every-day-life " symptom, caused mainly by stress, over-use of computers,

working too long hours, toxins in the diet, pollution, lack of sleep, etc. I

found my symptoms (identical to yours- I couldn't even work out simple maths)

got much better by improving my diet, (especially cutting out refined sugar, I

cannot stress this enough!), taking omega 3 supplements, trying not to get in a

state, and limiting the amount of time I spent at the computer, especially

looking up Lyme related things, which is enough to make anyone feel insane!

Also, I started to slow my thinking down to a level that I could deal with when

communicating with people, as I think the real problem is thinking too fast,

having too much to say, taking too much in at the same time, and then getting

stuck!

We don't live in a world anymore where our brains can function as well as

they should- why do you think almost everyone needs caffeine to function, or

drugs or some kind? I have heard that a very large proportion of office-working

people are permanently on cocaine, just so they have enough energy and

confidence to do their jobs!

Even according to Dr. Burrascano, the biggest trigger of Lyme sumptoms, (or

in my opinion, any disease) is stress, as it drastically lowers the immune

system (hence getting colds / flu any time you are run-down), but I think it

also causes almost every single symptom under the sun, and who are we to know

anymore which is a Lyme symptom and which is stress related? Not to mention,

worrying about having Lyme and dealing with unsympathetic doctors makes people

even more stressed (vicious circle!)

Can you eliminate / improve any of the things in the list above that I think

can cause cognitive problems..? I have come to the conclusion that you have to

treat each symptom as much as possible yourself with common sense, since there

is really no expert medical help (from what I have seen) that is better!

Very good luck and don't worry, you will find a way to get your brain back in

order, and in the meantime, do things at your own pace and try to be as calm and

" unruffled " as possible, however annoying people can be! Best wishes, Elli