Re: Anyone recognize these symptoms?

July 11, 2006

Hi, Whitney,

Your symptoms can certainly be Lyme, or Lyme plus co-infections. (The ticks

that carry Lyme can also carry other diseases, which you can have along with

Lyme.) If so, you will find yourself having to become very Lyme-knowledgeable

in order to advocate for your own treatment and that of your child. (She may

also be infected.)

Your best option is to find a doctor who specializes in treating Lyme disease.

We call them Lyme-Literate MDs, or LLMDs. If you let the group know where you

live, someone here may be able to give you a referral. LLMDs are difficult to

find, and most do not accept insurance. So it will be up to you to try to get

reimbursed by your insurance company.

Here are a few links to get you started. Where are you?

General:

http://www.lymeinfo.net/lymediseasetreatment.html

http://www.ilads.org/burrascano_1102.html

More Symptoms:

http://www.canlyme.com/patsymptoms.html

Co-Infections:

http://www.lymeinfo.net/coinfectionarticle.html

Best of luck. Many of us have done very well with treatment, despite

probably being infected as children. I was on doxycycline for 4 months, and

amoxicillin for 4 months, and my symptoms are nearly gone. I hope you get lucky

too.

Whitney Koski <whitkoski@...> wrote: Hello, all. I am a 26-year-old

female. I have struggled with a myriad

of symptoms since the birth of my daughter six months ago. Some of the

problems are older than that, but have just gotten much worse this

year. I have seen a neurologist, who told me he was convinced that I

had MS. However, I had a brain, neck and spine MRI (all with and

without contrast) and a spinal tap. No signs of MS on any of them. He

also thinks that he has ruled out lupus. I have spoken at length with

my ob/gyn and he thought that I might have lupus, rheumatoid arthritis,

or Lyme. He referred me to a rheumatologist, who I am seeing this

afternoon.

I lived out in the country in Mississippi as a child and can remember

vividly having to have ticks pulled off of me numerous times. Some of

my symptoms go all the way back to that time. So, here goes the list:

-stabbing sensations in my chest when I breathe at times (since a

child); was told that I must have childhood asthma that I would at soem

point grow out of; however, asthma treatment did nothing for my symptoms

- achy joints, part. my neck, lower back, knees, and ankles

- electric shock-like feelings in my legs and back at times

- extreme fatigue (not from getting up with a baby - she sleeps 12 hour

stretches at night)

- numbness on the right side of my body, part. my leg, but sometimes

reaches all the way to my face

- balance problems

- problems with short term memory

- a bizarre rash that spreads across my chest and up my neck and face

at times (flat, red splotches)

- problems keeping my body temperature regulated

- night sweats

If this sounds familiar at all, please let me know what you think. I am

desperate for answers here. I am to the point where taking care of my

kids is too much on me becuase I feel so cruddy all the time. Thanks so

much.

---------------------------------

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

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July 11, 2006

,

Thanks for responding so quickly. The appointment with the

rheumatologist this afternoon was disappointing for the most part. He

told me that I do have some symptoms of lupus and/or fibromyalgia,

but it does not cover all of my symptoms.

Then he told me that the neurological portion of the exam that he did

was abnormal to the point of being alarming. He said that he thought

it would take a highly trained neurologist with a lot of experience

to be able to diagnose my problem.

He did, however, do a Lyme test - more to appease me than for any

other reason, I think.

I am so tired of this already. I have had such trouble with my health

for years now that doctors cannot put their finger on. They can only

tell me that " something " is definitely wrong.

By the way, I live in Tennessee (close to Memphis) if anyone has a

doc they can recommend.

Thanks so much!!!!

Whitney

>

> Hi, Whitney,

>

> Your symptoms can certainly be Lyme, or Lyme plus co-infections.

(The ticks that carry Lyme can also carry other diseases, which you

can have along with Lyme.) If so, you will find yourself having to

become very Lyme-knowledgeable in order to advocate for your own

treatment and that of your child. (She may also be infected.)

>

> Your best option is to find a doctor who specializes in treating

Lyme disease. We call them Lyme-Literate MDs, or LLMDs. If you let

the group know where you live, someone here may be able to give you a

referral. LLMDs are difficult to find, and most do not accept

insurance. So it will be up to you to try to get reimbursed by your

insurance company.

July 11, 2006

Hello, all. I am a 26-year-

old female. I have struggled with a myriad

> of symptoms since the birth of my daughter six months ago. Some of

the

> problems are older than that, but have just gotten much worse this

> year. I have seen a neurologist, who told me he was convinced that

I

> had MS. However, I had a brain, neck and spine MRI (all with and

> without contrast) and a spinal tap. No signs of MS on any of them.

He

> also thinks that he has ruled out lupus. I have spoken at length

with

> my ob/gyn and he thought that I might have lupus, rheumatoid

arthritis,

> or Lyme. He referred me to a rheumatologist, who I am seeing this

> afternoon.

>

> I lived out in the country in Mississippi as a child and can

remember

> vividly having to have ticks pulled off of me numerous times. Some

of

> my symptoms go all the way back to that time. So, here goes the

list:

>

> -stabbing sensations in my chest when I breathe at times (since a

> child); was told that I must have childhood asthma that I would at

soem

> point grow out of; however, asthma treatment did nothing for my

symptoms

> - achy joints, part. my neck, lower back, knees, and ankles

> - electric shock-like feelings in my legs and back at times

> - extreme fatigue (not from getting up with a baby - she sleeps 12

hour

> stretches at night)

> - numbness on the right side of my body, part. my leg, but

sometimes

> reaches all the way to my face

> - balance problems

> - problems with short term memory

> - a bizarre rash that spreads across my chest and up my neck and

face

> at times (flat, red splotches)

> - problems keeping my body temperature regulated

> - night sweats

>

> If this sounds familiar at all, please let me know what you think.

I am

> desperate for answers here. I am to the point where taking care of

my

> kids is too much on me becuase I feel so cruddy all the time.

Thanks so

> much.

>

> ---------------------------------

> Messenger with Voice. Make PC-to-Phone Calls to the US (and

30+ countries) for 2¢/min or less.

>

July 11, 2006

Hello, all. I am a 26-year-

old female. I have struggled with a myriad

> of symptoms since the birth of my daughter six months ago. Some of

the

> problems are older than that, but have just gotten much worse this

> year. I have seen a neurologist, who told me he was convinced that

I

> had MS. However, I had a brain, neck and spine MRI (all with and

> without contrast) and a spinal tap. No signs of MS on any of them.

He

> also thinks that he has ruled out lupus. I have spoken at length

with

> my ob/gyn and he thought that I might have lupus, rheumatoid

arthritis,

> or Lyme. He referred me to a rheumatologist, who I am seeing this

> afternoon.

>

> I lived out in the country in Mississippi as a child and can

remember

> vividly having to have ticks pulled off of me numerous times. Some

of

> my symptoms go all the way back to that time. So, here goes the

list:

>

> -stabbing sensations in my chest when I breathe at times (since a

> child); was told that I must have childhood asthma that I would at

soem

> point grow out of; however, asthma treatment did nothing for my

symptoms

> - achy joints, part. my neck, lower back, knees, and ankles

> - electric shock-like feelings in my legs and back at times

> - extreme fatigue (not from getting up with a baby - she sleeps 12

hour

> stretches at night)

> - numbness on the right side of my body, part. my leg, but

sometimes

> reaches all the way to my face

> - balance problems

> - problems with short term memory

> - a bizarre rash that spreads across my chest and up my neck and

face

> at times (flat, red splotches)

> - problems keeping my body temperature regulated

> - night sweats

>

> If this sounds familiar at all, please let me know what you think.

I am

> desperate for answers here. I am to the point where taking care of

my

> kids is too much on me becuase I feel so cruddy all the time.

Thanks so

> much.

>

> ---------------------------------

> Messenger with Voice. Make PC-to-Phone Calls to the US (and

30+ countries) for 2¢/min or less.

>

July 12, 2006

Dear Whitney,

I've edited your list so it reflects what happens to me.

Has that doctor who's tested you said anthing about *treating* you?

- achy joints, my neck, lower back, knees, and ankles - shoulders, wrists

- electric shock-like feelings in my head

- extreme fatigue

- balance problems

- problems with short term memory

- all sorts of rashes, bumps, slow wound healing that started with the 6

tick bites I found on my ankle 5 years ago (one cat scratch on my leg from

7/6/05 - yes 2005 - still has not healed all the way

- problems keeping my body temperature regulated

- night sweats

and much more

Deanna

July 12, 2006

DeMarco wrote:

> There is a lab in Palo Alto CA that tests all the bands. It's IGeneX. It is,

> unfortunately, all out-of-pocket, but they are far more likely to give you

> useful information.

I've read a number of people's posts saying this and other test are not

covered by insurance. My insurance (Medicare) has covered *every* test

possible for Lyme and co-infections.

Deanna

July 12, 2006

Yep all those get to a Dr. I hope that you are beeing treated if not push for

treatment. Bud

bluesky <bluesky@...> wrote: Dear Whitney,

I've edited your list so it reflects what happens to me.

Has that doctor who's tested you said anthing about *treating* you?

- achy joints, my neck, lower back, knees, and ankles - shoulders, wrists

- electric shock-like feelings in my head

- extreme fatigue

- balance problems

- problems with short term memory

- all sorts of rashes, bumps, slow wound healing that started with the 6

tick bites I found on my ankle 5 years ago (one cat scratch on my leg from

7/6/05 - yes 2005 - still has not healed all the way

- problems keeping my body temperature regulated

- night sweats

and much more

Deanna

---------------------------------

Sneak preview the all-new .com. It's not radically different. Just

radically better.

July 12, 2006

Deanna,

Thanks for your response. I saw the rheumatologist yesterday and

discussed my symptoms. He seemed open to the idea that it could

possibly be lyme, but was just running the standard Lyme test. I saw

the neurologist today. He said that the Lyme test he did on me was

negative, so that meant that there was no possible way that I could

have Lyme. He tried to tell me that there was no possible way that I

could have Lyme because I live in the south and it is not prevalent

here. I told him that I know three people at my church alone who have

had it and have lived here as long as I have. I tried to show him the

research that I have done saying that there are lots of false

negatives on these lyme tests. He told me that those are written by

lay people who are trying to decipher medical information and doing

so incorrectly. He said that there are often times FALSE POSITIVES on

Lyme tests (i.e., you have the antibodies for it but you are not

actually infected).

He then told me that since I just had a baby and lost my sister in a

car wreck last year, that I am just depressed and " stressing myself

out too much over this thing " . He asked me (again) if my marriage was

good. I told him about the rheumatologist saying YESTERDAY that my

neurological symptoms were abnormal to the point of being alarming!!!

He asked me for the name of that doctor, as if I was making it up.

I left there in tears feeling like a looney bird. I know, know, know

in my heart that I am truly sick and this is not all in my head.

>

> Dear Whitney,

>

> I've edited your list so it reflects what happens to me.

> Has that doctor who's tested you said anthing about *treating* you?

>

> - achy joints, my neck, lower back, knees, and ankles - shoulders,

wrists

> - electric shock-like feelings in my head

> - extreme fatigue

> - balance problems

> - problems with short term memory

> - all sorts of rashes, bumps, slow wound healing that started with

the 6

> tick bites I found on my ankle 5 years ago (one cat scratch on my

leg from

> 7/6/05 - yes 2005 - still has not healed all the way

> - problems keeping my body temperature regulated

> - night sweats

>

> and much more

>

> Deanna

>

July 12, 2006

Dear Whitney,

I'm sorry you had such a disheartening visit with the doctor.

Please ask anywhere you can for the names of any LLMDs near you. They would

not give you this sort of ignorant grief that your current health

practitioners are.

Just keep holding the belief that you will get a knowledgeable medical

person to help you, even if things are not easy right now.

Since true Lyme Literate doctors are few and far between, you might have to

travel a far distance to see someone who truly can help you. But it's

absolutely worth it, like day and night compared to your current doctor.

Anyone? Please send her the name -- off list -- of any LLMD you know

anywhere near (or a little far) from Memphis, Tennessee.

Be well,

Deanna

Whitney Koski wrote:

> Thanks for your response. I saw the rheumatologist yesterday and

> discussed my symptoms. He seemed open to the idea that it could

> possibly be lyme, but was just running the standard Lyme test. I saw

> the neurologist today. He said that the Lyme test he did on me was

> negative, so that meant that there was no possible way that I could

> have Lyme. He tried to tell me that there was no possible way that I

> could have Lyme because I live in the south and it is not prevalent

> here. I told him that I know three people at my church alone who have

> had it and have lived here as long as I have. I tried to show him the

> research that I have done saying that there are lots of false

> negatives on these lyme tests. He told me that those are written by

> lay people who are trying to decipher medical information and doing

> so incorrectly. He said that there are often times FALSE POSITIVES on

> Lyme tests (i.e., you have the antibodies for it but you are not

> actually infected).

>

> He then told me that since I just had a baby and lost my sister in a

> car wreck last year, that I am just depressed and " stressing myself

> out too much over this thing " . He asked me (again) if my marriage was

> good. I told him about the rheumatologist saying YESTERDAY that my

> neurological symptoms were abnormal to the point of being alarming!!!

> He asked me for the name of that doctor, as if I was making it up.

>

> I left there in tears feeling like a looney bird. I know, know, know

> in my heart that I am truly sick and this is not all in my head.

July 13, 2006

Oh, Whitney, I'm so sorry.

You are not a loonie bird, and you are not alone. Most of the people here have

had similar responses from many doctors. Mine also thought it was depression,

menopause, etc, and tried to put me on Paxil.

I am so sorry to hear of your loss. That must be very hard.

If you do not yet have an LLMD, please post back here with " LLMD Needed in

Memphis, Tennessee " in the header. Not everyone here will read every message,

but most of us scan the subject lines.

There are false positives as well as false negatives in both the standard Lyme

tests. The western blot actually tests for bands that will come up positive for

things other than Lyme. It's ridiculous. Tell your doctor to look at the

statement on the bottom of that test result. It says Lyme is a clinical

diagnosis, and the test in his hand should not be used to rule it out in the

presense of clinical evidence.

You will find an LLMD. You will get treatment. You will get better.

Whitney Koski <whitkoski@...> wrote: Deanna,