Re: Wondering About Something

[Guest guest]

Bratt,

He was testing your vestibular system in your brain. Yes, it most likely

means that Lyme is in your brain. Even if you did not fall over, Lyme would

most likely be in your brain since you said that your Lyme disease is

chronic. It is just a sign that is consistent with chronic Lyme disease,

but could be due to other factors as well.

If you are seeing the doctor that I think you are, he will not make you do

any tests like the MRI. Just talk to him and let him know that you do not

have the money. The MRI is mostly for proof that you have Lyme. If you

have brain lesions, then he could check another MRI a year or so down the

road to see if the lesions have improved. If you did not get the MRI, he

would monitor your progress based on your symptoms.

Take care,

On Sun, Oct 25, 2009 at 8:52 AM, Bratt <memawbratt@...> wrote:

>

>

> I was recently diagnosed with Chronic Lyme Disease. We have a doctor here

> near me and luckily he is really cheaper than all the other doctors that

> everyone is talking about on here. He even gave me a break on the first

> visit so that I had to pay less than $100. Each visit there after is only

> going to be $45. So I guess I am lucky there. Anyway what I am wondering

> about is, he did this test on me where I stand with my feet together, eyes

> closed and I had to stand there. I couldn't. I kept falling over and then he

> asked me to touch my nose and I couldn't. He wants me to have an MRI and see

> a neurologist. Does this mean that the Lyme has gone into my brain, maybe?

> Can Lyme do that? I should have asked him but I was just so overwhelmed with

> everything he was saying to me. I am inflected in both knees and now it's

> traveling to my ankles and hips. He said it would be at least another year

> or so before I get rid of this. If I can get rid of it. I appreciate any

> help anyone can give me on this. And does anyone know how much an MRI costs?

> I have no insurance.

>

>

[Guest guest]

Hi,

My doctor had me do the same test.  Like the sobriaty (spell?) test.  I too,

could not stand with my eyes open, arms out and walk, I was falling over.  Then

she asked me to close my eyes and do it.  I could not even put my foot from

behind me in front at all!  I just couldn't move my foot!  She said since she

has Lyme too, that when her dr. had her do it, she fell over!

She never said anything to me about the brain or an MRI.  I am so new to this

too, that I am trying to do any and all research on it. 

Hopefully someone else on here can tell us if it affects the brain, but she

never said that to me.  Don't panic!  What state are you in?

a

________________________________

From: Bratt <memawbratt@...>

Sent: Sun, October 25, 2009 7:52:05 AM

Subject: [ ] Wondering About Something

 

I was recently diagnosed with Chronic Lyme Disease. We have a doctor here near

me and luckily he is really cheaper than all the other doctors that everyone is

talking about on here. He even gave me a break on the first visit so that I had

to pay less than $100. Each visit there after is only going to be $45. So I

guess I am lucky there. Anyway what I am wondering about is, he did this test on

me where I stand with my feet together, eyes closed and I had to stand there. I

couldn't. I kept falling over and then he asked me to touch my nose and I

couldn't. He wants me to have an MRI and see a neurologist. Does this mean that

the Lyme has gone into my brain, maybe? Can Lyme do that? I should have asked

him but I was just so overwhelmed with everything he was saying to me. I am

inflected in both knees and now it's traveling to my ankles and hips. He said it

would be at least another year or so before I get rid of this. If I can get rid

of it. I appreciate any

help anyone can give me on this. And does anyone know how much an MRI costs? I

have no insurance.

[Guest guest]

Hi Bratt,

The falling over can be an indicator of lyme in the brain... when it

disseminates, it can get anywhere in the body and I know it's really scary. The

tests will probably show normal (especially if you have lyme and it's lyme

induced), and if you can get them to rule out other things, that would be good.

Give one of your local labs a call and ask what they'd charge.

Re: insurance - if you don't have it because of financial reasons, you may

qualify for state insurance. You'd have to go see you local department of

social services for Medical Assistance and it can be a life saver, especially if

you need tests, treatment, hospital, etc.

Cindi

Cindi Callanan, MsT, CST, BEC

Power Wellness Solutions

Integrative Wellness Consultant/Health Coach

National Cleansing Coach

410-771-4994 O

443-980-7369 Cell

[ ] Wondering About Something

I was recently diagnosed with Chronic Lyme Disease. We have a doctor here

near me and luckily he is really cheaper than all the other doctors that

everyone is talking about on here. He even gave me a break on the first visit so

that I had to pay less than $100. Each visit there after is only going to be

$45. So I guess I am lucky there. Anyway what I am wondering about is, he did

this test on me where I stand with my feet together, eyes closed and I had to

stand there. I couldn't. I kept falling over and then he asked me to touch my

nose and I couldn't. He wants me to have an MRI and see a neurologist. Does this

mean that the Lyme has gone into my brain, maybe? Can Lyme do that? I should

have asked him but I was just so overwhelmed with everything he was saying to

me. I am inflected in both knees and now it's traveling to my ankles and hips.

He said it would be at least another year or so before I get rid of this. If I

can get rid of it. I appreciate any help anyone can give me on this. And does

anyone know how much an MRI costs? I have no insurance.

[Guest guest]

The test the doctor performed was to look at the state of your autonomic nervous

system. The autonomic nervous system is very complex and involves the body's

system for automatically adjusting to changes, such as in temperature,

verticalness or horizontalness (balance and needed blood pressure adjustments),

physical activity demands for the heart to increase it's rate, etc. It involves

the whole body including the brain. Autonomic nervous system problems are common

in Lyme.

Tish

[Guest guest]

yes, lyme can go to the brain, it did in me. the good news is with proper

treatment you can get better! i am on my 10th month of antibiotics and am

doing really well. not able to work yet but feel like soon. i know your dr.

is cheap but please make sure he/she is literate in lyme or you might not

get better or you could get worse. read all you can, my local library had a

dozen books on lyme and that is where i started. i had an MRI and no

insurance also and my bill was around $1000. if i recall correctly. i was on

a payment plan. do not get it done in the hospital, they are more expensive.

also, you might want to look into a website called needymeds.com i think,

because antibiotics could cost a lot! ask on this site, lymenet.com or

mdjunction.com under lyme group for info on meds and help with cost, i know

there is some out there. good luck and get informed as much as possible.

also, look into detoxing while on antibiotics, very important.

On Sun, Oct 25, 2009 at 4:52 AM, Bratt <memawbratt@...> wrote:

>

>

> I was recently diagnosed with Chronic Lyme Disease. We have a doctor here

> near me and luckily he is really cheaper than all the other doctors that

> everyone is talking about on here. He even gave me a break on the first

> visit so that I had to pay less than $100. Each visit there after is only

> going to be $45. So I guess I am lucky there. Anyway what I am wondering

> about is, he did this test on me where I stand with my feet together, eyes

> closed and I had to stand there. I couldn't. I kept falling over and then he

> asked me to touch my nose and I couldn't. He wants me to have an MRI and see

> a neurologist. Does this mean that the Lyme has gone into my brain, maybe?

> Can Lyme do that? I should have asked him but I was just so overwhelmed with

> everything he was saying to me. I am inflected in both knees and now it's

> traveling to my ankles and hips. He said it would be at least another year

> or so before I get rid of this. If I can get rid of it. I appreciate any

> help anyone can give me on this. And does anyone know how much an MRI costs?

> I have no insurance.

>

>

[Guest guest]

He was probably looking for neurally-mediated hyptention (NMH), a

neurological issue that's common in both CFS and Lyme. NMH occurs when

there's damage to the hypothalamus/pituitary/adrenal axis, which in

turn affects your body's ability to maintain adequate blood flow. The

blood volume shrinks, and the blood itself turns thick and sticky.

When you stand up too fast, or have to stand too long (a few minutes,

in some people), you get light-headed because the blood has a harder-

than-usual time getting to your head. Alternatively, some of us get

Lyme in our middle ears, which messes with the balance centers; and

others of us have other kinds of nerve damage that will make us fail

this test.

Yes, Lyme absolutely goes to the brain: it concentrates in the parts

of the body that have lots of collagen; and since the brain is almost

pure collagen, it's usually very heavily infected in disseminated

Lyme. A lot (if not most) of us have neurological, hormonal, mood,

cognitive, and sleep disruptions that are directly connected to Lyme

in the brain, particularly the hypothalamus.

MRIs aren't cheap. The last one I had -- it was a while ago -- cost

about $1500. You might discuss your financial limits with him, and see

if there are other, cheaper ways to get the information he wants.

Sara

On Oct 25, 2009, at 5:52 AM, Bratt wrote:

> I was recently diagnosed with Chronic Lyme Disease. We have a doctor

> here near me and luckily he is really cheaper than all the other

> doctors that everyone is talking about on here. He even gave me a

> break on the first visit so that I had to pay less than $100. Each

> visit there after is only going to be $45. So I guess I am lucky

> there. Anyway what I am wondering about is, he did this test on me

> where I stand with my feet together, eyes closed and I had to stand

> there. I couldn't. I kept falling over and then he asked me to touch

> my nose and I couldn't. He wants me to have an MRI and see a

> neurologist. Does this mean that the Lyme has gone into my brain,

> maybe? Can Lyme do that? I should have asked him but I was just so

> overwhelmed with everything he was saying to me. I am inflected in

> both knees and now it's traveling to my ankles and hips. He said it

> would be at least another year or so before I get rid of this. If I

> can get rid of it. I appreciate any help anyone can give me on this.

> And does anyone know how much an MRI costs? I have no insurance.

>

>

[Guest guest]

My doc is literate in Lyme. He even has it. I live in an area that people

come to to retire. So there really aren't a whole lot of docs here. So I got

lucky with this one. But there are a lot of cases of LD here. Ticks are

terrible in this area.

Unfortunately I have to go to the hospital to get the MRI done because we

don't have one anywhere else around me. I will check out those websites

though. Thank you very much.

n

-- Re: [ ] Wondering About Something

yes, lyme can go to the brain, it did in me. the good news is with proper

treatment you can get better! i am on my 10th month of antibiotics and am

doing really well. not able to work yet but feel like soon. i know your dr.

is cheap but please make sure he/she is literate in lyme or you might not

get better or you could get worse. read all you can, my local library had a

dozen books on lyme and that is where i started. i had an MRI and no

insurance also and my bill was around $1000. if i recall correctly. i was on

a payment plan. do not get it done in the hospital, they are more expensive.

also, you might want to look into a website called needymeds.com i think,

because antibiotics could cost a lot! ask on this site, lymenet.com or

mdjunction.com under lyme group for info on meds and help with cost, i know

there is some out there. good luck and get informed as much as possible.

also, look into detoxing while on antibiotics, very important.

On Sun, Oct 25, 2009 at 4:52 AM, Bratt <memawbratt@...> wrote:

>

>

> I was recently diagnosed with Chronic Lyme Disease. We have a doctor here

> near me and luckily he is really cheaper than all the other doctors that

> everyone is talking about on here. He even gave me a break on the first

> visit so that I had to pay less than $100. Each visit there after is only

> going to be $45. So I guess I am lucky there. Anyway what I am wondering

> about is, he did this test on me where I stand with my feet together, eyes

> closed and I had to stand there. I couldn't. I kept falling over and then

he

> asked me to touch my nose and I couldn't. He wants me to have an MRI and

see

> a neurologist. Does this mean that the Lyme has gone into my brain, maybe?

> Can Lyme do that? I should have asked him but I was just so overwhelmed

with

> everything he was saying to me. I am inflected in both knees and now it's

> traveling to my ankles and hips. He said it would be at least another year

> or so before I get rid of this. If I can get rid of it. I appreciate any

> help anyone can give me on this. And does anyone know how much an MRI

costs?

> I have no insurance.

>

>

[Guest guest]

I'm in Virginia. The only real thing I know about LD is that it can be very

painful. And the meds have caused all kinds of havoc on my body. My doc

already told me that it would take at least a year to get rid of this.

-- [ ] Wondering About Something

I was recently diagnosed with Chronic Lyme Disease. We have a doctor here

near me and luckily he is really cheaper than all the other doctors that

everyone is talking about on here. He even gave me a break on the first

visit so that I had to pay less than $100. Each visit there after is only

going to be $45. So I guess I am lucky there. Anyway what I am wondering

about is, he did this test on me where I stand with my feet together, eyes

closed and I had to stand there. I couldn't. I kept falling over and then he

asked me to touch my nose and I couldn't. He wants me to have an MRI and see

a neurologist. Does this mean that the Lyme has gone into my brain, maybe?

Can Lyme do that? I should have asked him but I was just so overwhelmed with

everything he was saying to me. I am inflected in both knees and now it's

traveling to my ankles and hips. He said it would be at least another year

or so before I get rid of this. If I can get rid of it. I appreciate any

help anyone can give me on this. And does anyone know how much an MRI

costs? I have no insurance.

[Guest guest]

I am also in Virginia, Northern Virginia, but we have LLMD's all over Virginia.

What area are you in specifically? You can always travel to see a great doc. If

you are anywhere near Loudon countyyou can certainly find help there.

Lissa

>

> I'm in Virginia. The only real thing I know about LD is that it can be very

> painful. And the meds have caused all kinds of havoc on my body. My doc

> already told me that it would take at least a year to get rid of this.

>

> -- [ ] Wondering About Something

>

>

> I was recently diagnosed with Chronic Lyme Disease. We have a doctor here

> near me and luckily he is really cheaper than all the other doctors that

> everyone is talking about on here. He even gave me a break on the first

> visit so that I had to pay less than $100. Each visit there after is only

> going to be $45. So I guess I am lucky there. Anyway what I am wondering

> about is, he did this test on me where I stand with my feet together, eyes

> closed and I had to stand there. I couldn't. I kept falling over and then he

> asked me to touch my nose and I couldn't. He wants me to have an MRI and see

> a neurologist. Does this mean that the Lyme has gone into my brain, maybe?

> Can Lyme do that? I should have asked him but I was just so overwhelmed with

> everything he was saying to me. I am inflected in both knees and now it's

> traveling to my ankles and hips. He said it would be at least another year

> or so before I get rid of this. If I can get rid of it. I appreciate any

> help anyone can give me on this. And does anyone know how much an MRI

> costs? I have no insurance.

>

>

[Guest guest]

He seemed really concerned about me loosing my balance the way I do. I have

bruises all over me from falling into things. He doesn't need any further

proof that I have LD. I think the blood test took care of that. Not sure.

This doctor used to be a regular doctor until he contracted LD then he

became a specialist in Lyme.

-- Re: [ ] Wondering About Something

Bratt,

He was testing your vestibular system in your brain. Yes, it most likely

means that Lyme is in your brain. Even if you did not fall over, Lyme would

most likely be in your brain since you said that your Lyme disease is

chronic. It is just a sign that is consistent with chronic Lyme disease,

but could be due to other factors as well.

If you are seeing the doctor that I think you are, he will not make you do

any tests like the MRI. Just talk to him and let him know that you do not

have the money. The MRI is mostly for proof that you have Lyme. If you

have brain lesions, then he could check another MRI a year or so down the

road to see if the lesions have improved. If you did not get the MRI, he

would monitor your progress based on your symptoms.

Take care,

On Sun, Oct 25, 2009 at 8:52 AM, Bratt <memawbratt@...> wrote:

>

>

> I was recently diagnosed with Chronic Lyme Disease. We have a doctor here

> near me and luckily he is really cheaper than all the other doctors that

> everyone is talking about on here. He even gave me a break on the first

> visit so that I had to pay less than $100. Each visit there after is only

> going to be $45. So I guess I am lucky there. Anyway what I am wondering

> about is, he did this test on me where I stand with my feet together, eyes

> closed and I had to stand there. I couldn't. I kept falling over and then

he

> asked me to touch my nose and I couldn't. He wants me to have an MRI and

see

> a neurologist. Does this mean that the Lyme has gone into my brain, maybe?

> Can Lyme do that? I should have asked him but I was just so overwhelmed

with

> everything he was saying to me. I am inflected in both knees and now it's

> traveling to my ankles and hips. He said it would be at least another year

> or so before I get rid of this. If I can get rid of it. I appreciate any

> help anyone can give me on this. And does anyone know how much an MRI

costs?

> I have no insurance.

>

>

[Guest guest]

I don't qualify for Medicaid. My husband is disabled and so am I. I was

told, though, that I might qualify for emergency Medicaid on special

circumstances. I am going to call them tomorrow and see if it is possible.

-- Re: [ ] Wondering About Something

Hi Bratt,

The falling over can be an indicator of lyme in the brain... when it

disseminates, it can get anywhere in the body and I know it's really scary.

The tests will probably show normal (especially if you have lyme and it's

lyme induced), and if you can get them to rule out other things, that would

be good. Give one of your local labs a call and ask what they'd charge.

Re: insurance - if you don't have it because of financial reasons, you may

qualify for state insurance. You'd have to go see you local department of

social services for Medical Assistance and it can be a life saver,

especially if you need tests, treatment, hospital, etc.

Cindi

Cindi Callanan, MsT, CST, BEC

Power Wellness Solutions

Integrative Wellness Consultant/Health Coach

National Cleansing Coach

410-771-4994 O

443-980-7369 Cell

[ ] Wondering About Something

I was recently diagnosed with Chronic Lyme Disease. We have a doctor

here near me and luckily he is really cheaper than all the other doctors

that everyone is talking about on here. He even gave me a break on the first

visit so that I had to pay less than $100. Each visit there after is only

going to be $45. So I guess I am lucky there. Anyway what I am wondering

about is, he did this test on me where I stand with my feet together, eyes

closed and I had to stand there. I couldn't. I kept falling over and then he

asked me to touch my nose and I couldn't. He wants me to have an MRI and see

a neurologist. Does this mean that the Lyme has gone into my brain, maybe?

Can Lyme do that? I should have asked him but I was just so overwhelmed with

everything he was saying to me. I am inflected in both knees and now it's

traveling to my ankles and hips. He said it would be at least another year

or so before I get rid of this. If I can get rid of it. I appreciate any

help anyone can give me on this. And does anyone know how much an MRI costs?

I have no insurance.

[Guest guest]

I just can't believe that Lyme can do all this to my body. I always thought

that Lyme Disease was easy to get rid of with just a pill or two. I think my

husband is under that impression too because he hasn't even bothered to look

for insurance for me. The doc knows that funds are limited with us. But we

can afford insurance on me. Things will just be a bit tight for awhile.

-- Re: [ ] Wondering About Something

He was probably looking for neurally-mediated hyptention (NMH), a

neurological issue that's common in both CFS and Lyme. NMH occurs when

there's damage to the hypothalamus/pituitary/adrenal axis, which in

turn affects your body's ability to maintain adequate blood flow. The

blood volume shrinks, and the blood itself turns thick and sticky.

When you stand up too fast, or have to stand too long (a few minutes,

in some people), you get light-headed because the blood has a harder-

than-usual time getting to your head. Alternatively, some of us get

Lyme in our middle ears, which messes with the balance centers; and

others of us have other kinds of nerve damage that will make us fail

this test.

Yes, Lyme absolutely goes to the brain: it concentrates in the parts

of the body that have lots of collagen; and since the brain is almost

pure collagen, it's usually very heavily infected in disseminated

Lyme. A lot (if not most) of us have neurological, hormonal, mood,

cognitive, and sleep disruptions that are directly connected to Lyme

in the brain, particularly the hypothalamus.

MRIs aren't cheap. The last one I had -- it was a while ago -- cost

about $1500. You might discuss your financial limits with him, and see

if there are other, cheaper ways to get the information he wants.

Sara

On Oct 25, 2009, at 5:52 AM, Bratt wrote:

> I was recently diagnosed with Chronic Lyme Disease. We have a doctor

> here near me and luckily he is really cheaper than all the other

> doctors that everyone is talking about on here. He even gave me a

> break on the first visit so that I had to pay less than $100. Each

> visit there after is only going to be $45. So I guess I am lucky

> there. Anyway what I am wondering about is, he did this test on me

> where I stand with my feet together, eyes closed and I had to stand

> there. I couldn't. I kept falling over and then he asked me to touch

> my nose and I couldn't. He wants me to have an MRI and see a

> neurologist. Does this mean that the Lyme has gone into my brain,

> maybe? Can Lyme do that? I should have asked him but I was just so

> overwhelmed with everything he was saying to me. I am inflected in

> both knees and now it's traveling to my ankles and hips. He said it

> would be at least another year or so before I get rid of this. If I

> can get rid of it. I appreciate any help anyone can give me on this.

> And does anyone know how much an MRI costs? I have no insurance.

>

>

[Guest guest]

I live on the Eastern Shore where there is NOTHING but farm land. We have

one hospital, and a hand full of doctors. There isn't a whole lot here. If I

were to travel the only place to go is over the Chesapeake Bay Bridge Tunnel

and I can't afford the $12 to cross it (they charge both ways) every time I

need to go to the doc. We only get SSD on my husband.

-- [ ] Wondering About Something

>

>

> I was recently diagnosed with Chronic Lyme Disease. We have a doctor here

> near me and luckily he is really cheaper than all the other doctors that

> everyone is talking about on here. He even gave me a break on the first

> visit so that I had to pay less than $100. Each visit there after is only

> going to be $45. So I guess I am lucky there. Anyway what I am wondering

> about is, he did this test on me where I stand with my feet together, eyes

> closed and I had to stand there. I couldn't. I kept falling over and then

he

> asked me to touch my nose and I couldn't. He wants me to have an MRI and

see

> a neurologist. Does this mean that the Lyme has gone into my brain, maybe?

> Can Lyme do that? I should have asked him but I was just so overwhelmed

with

> everything he was saying to me. I am inflected in both knees and now it's

> traveling to my ankles and hips. He said it would be at least another year

> or so before I get rid of this. If I can get rid of it. I appreciate any

> help anyone can give me on this. And does anyone know how much an MRI

> costs? I have no insurance.

>

>

[Guest guest]

The condition you're likely being checked for, involving the central nervous

system, is neurological Lyme disease or neuroborreliosis. Do a Google search for

these terms and you'll find many symptoms I'd bet you're dealing with.

When my initial treatment (oral doxy for the knee arthritis) failed to improve

the rest of me, I was sent to a neurologist. She ordered a brain MRI to check

for lesions BUT by themselves they are not a way to prove CNS Lyme since lesions

are also present in MS and other conditions. Then we did a spinal tap to test

the cerebral-spinal fluid and it was positive; only then did they do IV

antibiotic treatment.

Reading all you can is a very good idea (don't remember who suggested it). Just

be sure to look into neurological Lyme, neuroborreliosis, CNS Lyme... or other

terms describing the CNS involvement. Most literature (that I've found anyway)

dealing with Lyme is rudimentary and doesn't delve into neurological involvement

unless you're specifically looking for it.

I would also suggest keeping a notepad with you and writing down questions you

have (for either doc) as they come up. I have cognitive issues from Lyme and

have found it very helpful.

Good luck! It's a long road but there are many folks here to help you!

>

> >

> >

> > I was recently diagnosed with Chronic Lyme Disease. We have a doctor here

> > near me and luckily he is really cheaper than all the other doctors that

> > everyone is talking about on here. He even gave me a break on the first

> > visit so that I had to pay less than $100. Each visit there after is only

> > going to be $45. So I guess I am lucky there. Anyway what I am wondering

> > about is, he did this test on me where I stand with my feet together, eyes

> > closed and I had to stand there. I couldn't. I kept falling over and then

> he

> > asked me to touch my nose and I couldn't. He wants me to have an MRI and

> see

> > a neurologist. Does this mean that the Lyme has gone into my brain, maybe?

> > Can Lyme do that? I should have asked him but I was just so overwhelmed

> with

> > everything he was saying to me. I am inflected in both knees and now it's

> > traveling to my ankles and hips. He said it would be at least another year

> > or so before I get rid of this. If I can get rid of it. I appreciate any

> > help anyone can give me on this. And does anyone know how much an MRI

> costs?

> > I have no insurance.

> >

> >

[Guest guest]

yes, I am going thru every test in the book, neurologically speaking for CNS

Lyme; (or to rule out MS); this is crazy; they want me to take a 4 hour

psychological/cognitive test as well. They are doing everything from MRI's,

EMG's, EEG's, NCV's, special vision testing; starting all over again since I

moved back to CT; they won't accept my LD diagnosis from Cal; I thought for sure

coming to CT they would recognize it and treat it but they are telling me that

LD does not cause the extreme pain I am in. I cry myself to sleep every night

and cry every morning when I get up. By the time the doctors see me I look

fine, cause I have taken my pain meds; plus, as you all know, nobody can know

what we go through just by looking at us. Does anybody out there know if a

lumbar puncture is pretty difinitive? Are there any definitive tests for MS or

is it a clinical dx as well? I am paying so much for my cobra insurance now

that I refuse to go out of network and pay out of pocket for an LLMD so I

suppose I have to go through all these stupid tests to make these doctors happy

but one would think that doctors and nuerologists in Lyme, CT would be up on it

all. One year this week since I have had to stop working; I read all of your

posts and I still think it is criminal what is going on here....our lives are

being taken from us and sometimes it seems that nobody even cares. I shouldn't

have to pay thousands of dollars for an LLMD; our doctors and especially

neurologists should be trained in it; why are they refusing to honor my

diagnosis?! I actually have to rehearse what I should and should not say before

going into my doctor so as not to offend him; God forbid a patient that may be

educated; what are they so scared of? Sorry, I am rambling, but after a year, I

quite frankly have had it and want my life back; I want to be treated and want

to get back to work and am sick of my time being wasted so as to be politically

correct. thanks for listening, robin

>

> >

> >

> > I was recently diagnosed with Chronic Lyme Disease. We have a doctor here

> > near me and luckily he is really cheaper than all the other doctors that

> > everyone is talking about on here. He even gave me a break on the first

> > visit so that I had to pay less than $100. Each visit there after is only

> > going to be $45. So I guess I am lucky there. Anyway what I am wondering

> > about is, he did this test on me where I stand with my feet together, eyes

> > closed and I had to stand there. I couldn't. I kept falling over and then he

> > asked me to touch my nose and I couldn't. He wants me to have an MRI and see

> > a neurologist. Does this mean that the Lyme has gone into my brain, maybe?

> > Can Lyme do that? I should have asked him but I was just so overwhelmed with

> > everything he was saying to me. I am inflected in both knees and now it's

> > traveling to my ankles and hips. He said it would be at least another year

> > or so before I get rid of this. If I can get rid of it. I appreciate any

> > help anyone can give me on this. And does anyone know how much an MRI costs?

> > I have no insurance.

> >

> >

[Guest guest]

Sara; I have had negative MRI's but have so, so many neurological symtpoms; how

definitive is an MRI; would a non-LLMD be able to detect LD in an MRI (somebody

once told me there are certain patterns/waves? that only an LLMD would

recognize). If so, maybe I should take my MRI to somebody else to read? My

last one a year ago was negative; just had one last week; looking forward to the

neurologists take on it at my next appt; next he wants to do a lumbar puncture.

>

> > I was recently diagnosed with Chronic Lyme Disease. We have a doctor

> > here near me and luckily he is really cheaper than all the other

> > doctors that everyone is talking about on here. He even gave me a

> > break on the first visit so that I had to pay less than $100. Each

> > visit there after is only going to be $45. So I guess I am lucky

> > there. Anyway what I am wondering about is, he did this test on me

> > where I stand with my feet together, eyes closed and I had to stand

> > there. I couldn't. I kept falling over and then he asked me to touch

> > my nose and I couldn't. He wants me to have an MRI and see a

> > neurologist. Does this mean that the Lyme has gone into my brain,

> > maybe? Can Lyme do that? I should have asked him but I was just so

> > overwhelmed with everything he was saying to me. I am inflected in

> > both knees and now it's traveling to my ankles and hips. He said it

> > would be at least another year or so before I get rid of this. If I

> > can get rid of it. I appreciate any help anyone can give me on this.

> > And does anyone know how much an MRI costs? I have no insurance.

> >

> >

[Guest guest]

Have you had a western blot done yet? That would seem the obvious place to

start.

> [ ] Re: Wondering About Something

>

> Sara; I have had negative MRI's but have so, so many

> neurological symtpoms; how definitive is an MRI; would a

> non-LLMD be able to detect LD in an MRI (somebody once told

> me there are certain patterns/waves? that only an LLMD would

> recognize). If so, maybe I should take my MRI to somebody

> else to read? My last one a year ago was negative; just had

> one last week; looking forward to the neurologists take on it

> at my next appt; next he wants to do a lumbar puncture.

>

[Guest guest]

I think MS and CFS are both clinical diagnosis as they don't really know

what causes them. Of course Chronic Lyme is frequently misdiagnosed that as

both of these.

You won't be able to fight them if they won't even acknowledge the

possibility of Chronic Lyme. Either take your health into your own hands and

do some natural treatments or get an LLMD.

My wife and I choose the former and she has had little antibiotics over the

last couple years, yet she is at 90% health now.

www.lyme-resource.com

You can lead a person to a fact, but you can't make them think! -

> [ ] Re: Wondering About Something

>

> yes, I am going thru every test in the book, neurologically

> speaking for CNS Lyme; (or to rule out MS); this is crazy;

> they want me to take a 4 hour psychological/cognitive test as

> well. They are doing everything from MRI's, EMG's, EEG's,

> NCV's, special vision testing; starting all over again since

> I moved back to CT; they won't accept my LD diagnosis from

> Cal; I thought for sure coming to CT they would recognize it

> and treat it but they are telling me that LD does not cause

> the extreme pain I am in. I cry myself to sleep every night

> and cry every morning when I get up. By the time the doctors

> see me I look fine, cause I have taken my pain meds; plus, as

> you all know, nobody can know what we go through just by

> looking at us. Does anybody out there know if a lumbar

> puncture is pretty difinitive? Are there any definitive

> tests for MS or is it a clinical dx as well? I am paying so

> much for my cobra insurance now that I refuse to go out of

> network and pay out of pocket for an LLMD so I suppose I have

> to go through all these stupid tests to make these doctors

> happy but one would think that doctors and nuerologists in

> Lyme, CT would be up on it all. One year this week since I

> have had to stop working; I read all of your posts and I

> still think it is criminal what is going on here....our lives

> are being taken from us and sometimes it seems that nobody

> even cares. I shouldn't have to pay thousands of dollars for

> an LLMD; our doctors and especially neurologists should be

> trained in it; why are they refusing to honor my diagnosis?!

> I actually have to rehearse what I should and should not say

> before going into my doctor so as not to offend him; God

> forbid a patient that may be educated; what are they so

> scared of? Sorry, I am rambling, but after a year, I quite

> frankly have had it and want my life back; I want to be

> treated and want to get back to work and am sick of my time

> being wasted so as to be politically correct. thanks for

> listening, robin

>

[Guest guest]

My LLMD, a neurologist, had me do both an MRI and a SPECT scan. The way he

described it to me, the MRI shows the structural integrity of the brain whereas

the SPECT scan shows the functional workings of the brain.

The MRI can show the white lesions that are common in MS and can also be present

with Lyme. The MRI will show the quantity, size, location of the lesions but

can not show the cause - MS, Lyme, etc. Having an MRI done near the beginning

of treatment can be useful as a baseline for comparison down the road. Lesions

caused by Lyme have been shown to go away with treatment but, according to my

LLMD, they are difficult to get rid of.

The SPECT scan shows the functional workings by depicting the flow of blood

throughout the brain. A common finding with Lyme patients is hypo perfusion, or

decreased blood flow. I had quite a lot of this. The areas in my brain that

showed hypoperfusion mapped to some of my specific symptoms. For example, I had

been bumping into things on my left side. Turns out there was little blood

flowing to the right occipital lobe and later vision testing showed that I had

blind spots in both eyes on the left side. When I saw the scan pictures I

thought, Yes! that is exactly what I've been feeling in my brain! The brain fog

and thick headed feeling just seems to feel like there is not enough oxygen

getting to my brain cells. My LLMD says you don't treat hypoperfusion per se,

you treat the Lyme and the hypoperfusion clears up. He did suggest that I take

a baby aspirin every day which I've been doing for about 10 months. Hard to

tell if it helps...

-

[Guest guest]

is a spect done like a mri..is it noisy..i cant stand the noise...i couldnt do

an mri..it almost killed me sound was excrutiatinghow is a spect done?

From: on <maryha@...>

Subject: [ ] Re: Wondering About Something

Date: Tuesday, October 27, 2009, 6:48 AM

 

My LLMD, a neurologist, had me do both an MRI and a SPECT

scan. The way he described it to me, the MRI shows the structural integrity of

the brain whereas the SPECT scan shows the functional workings of the brain.

The MRI can show the white lesions that are common in MS and can also be present

with Lyme. The MRI will show the quantity, size, location of the lesions but

can not show the cause - MS, Lyme, etc. Having an MRI done near the beginning

of treatment can be useful as a baseline for comparison down the road. Lesions

caused by Lyme have been shown to go away with treatment but, according to my

LLMD, they are difficult to get rid of.

The SPECT scan shows the functional workings by depicting the flow of blood

throughout the brain. A common finding with Lyme patients is hypo perfusion, or

decreased blood flow. I had quite a lot of this. The areas in my brain that

showed hypoperfusion mapped to some of my specific symptoms. For example, I had

been bumping into things on my left side. Turns out there was little blood

flowing to the right occipital lobe and later vision testing showed that I had

blind spots in both eyes on the left side. When I saw the scan pictures I

thought, Yes! that is exactly what I've been feeling in my brain! The brain fog

and thick headed feeling just seems to feel like there is not enough oxygen

getting to my brain cells. My LLMD says you don't treat hypoperfusion per se,

you treat the Lyme and the hypoperfusion clears up. He did suggest that I take

a baby aspirin every day which I've been doing for about 10 months. Hard to

tell if it helps...

-

[Guest guest]

>

> they want me to take a 4 hour psychological/cognitive test as well.

That's actually a good thing. Cognitive impairment that doesn't get better is no

picnic. Having the testing will show any deficits you now have, as well as

provide a baseline for the future.

My husband and I each had undergone it, though he got a much better test (and

tester) than I had. I can't recommend anything at OHSU, especially if Lyme has

been mentioned.

[Guest guest]

I'm not Sara, but...

Brain lesions seen on MRI are not a defining thing in and of themselves, but can

help with the overall clinical picture.

If you have lesions and they go away after IV treatment, they were likely caused

by Lyme and your doc will assume so, LLMD or not. (In my case, not an LLMD.) If

they DON'T go away, they're much more likely to indicate MS.

> >

> > > I was recently diagnosed with Chronic Lyme Disease. We have a doctor

> > > here near me and luckily he is really cheaper than all the other

> > > doctors that everyone is talking about on here. He even gave me a

> > > break on the first visit so that I had to pay less than $100. Each

> > > visit there after is only going to be $45. So I guess I am lucky

> > > there. Anyway what I am wondering about is, he did this test on me

> > > where I stand with my feet together, eyes closed and I had to stand

> > > there. I couldn't. I kept falling over and then he asked me to touch

> > > my nose and I couldn't. He wants me to have an MRI and see a

> > > neurologist. Does this mean that the Lyme has gone into my brain,

> > > maybe? Can Lyme do that? I should have asked him but I was just so

> > > overwhelmed with everything he was saying to me. I am inflected in

> > > both knees and now it's traveling to my ankles and hips. He said it

> > > would be at least another year or so before I get rid of this. If I

> > > can get rid of it. I appreciate any help anyone can give me on this.

> > > And does anyone know how much an MRI costs? I have no insurance.

> > >

> > >

[Guest guest]

Thank you, because this is one area I've never dealt with, though I

wish I had.

Sara

On Oct 27, 2009, at 8:42 AM, mamawolf33 wrote:

> I'm not Sara, but...

>

> Brain lesions seen on MRI are not a defining thing in and of

> themselves, but can help with the overall clinical picture.

>

> If you have lesions and they go away after IV treatment, they were

> likely caused by Lyme and your doc will assume so, LLMD or not. (In

> my case, not an LLMD.) If they DON'T go away, they're much more

> likely to indicate MS.

>

>

[Guest guest]

The spect scan is completely different. I had one years ago and don't remember

it being noisy.

Cindi

Cindi Callanan, MsT, CST, BEC

Re: [ ] Re: Wondering About Something

is a spect done like a mri..is it noisy..i cant stand the noise...i couldnt

do an mri..it almost killed me sound was excrutiatinghow is a spect done?

[Guest guest]

The SPECT procedure is pretty similar to an MRI but was a lot quieter and

doesn't require that you be as far " in " the machine - at least on the machines

that were used for my tests. If I remember correctly - it was a year ago! -

with the SPECT they have you lie down on the machine table and then they take

some initial pictures after which you are given an IV and then lie quietly for

about 20 minutes. Once the contrast is diffused they repeat the process. The

room is dark and quiet and the machine moves around your head as well as closely

over your face but you are not actually " in " the machine. The machine makes

slight whirring and clicking sounds when it moves but it is nothing like the

shaking and pounding of the MRI. I had both an MRI and SPECT done on the same

day which I don't recommend. I felt horrible for a couple days afterwards -

probably from the two different dyes required although possibly from the full

day of travel required to have these procedures done near my LLMD. The SPECT

provided far more useful info for my LLMD than the MRI since it matched and

explained some of my Lyme symptoms but I know he wanted the MRI too to rule out

structural causes for the symptoms.

-