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sweetenloe1 wrote:

>

> ... I just figured

> that docs start you with a dose that is high to kinda " make-up " for

> lost time. I think it's better to work down on the dose rather than

> up. I'm sure most of you agree. Not getting enough is like hitting a

> wall!

Until very recently that was strictly a no no. Most doctors still will

not jump to a full replacement dose, let alone start above and work

down. The danger is that too high a dose, or any sudden change in dose,

could induce a cardiac infarction. However, studies have shown this

hazard mainly applies to older folks or those with ongoing heart issues,

so they now encourage fairly large jumps instead of the older titration

approach.

Chuck

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  • 1 month later...
Guest guest

Hi Babette,

Welcome to the group. You sound like you have been lucky enough to

find yourself to knowledgable orthopedists without years of going

from doctor to doctor looking for answers. I know you will find lots

of information and support here and we all welcome hearing more about

you.

As you probably know, a number of members have had surgery with

DrBridwell at ...and several have had surgery with DrLenke...so

I am sure you will have the benefit of some of the best advice and

perspective out there. When is your appointment? I will put it on

the calendar.

I wanted to acknowledge that what you are going through is huge. I

don't want you to feel that just because many of us have experienced

similar challenges that you should minimize how big an impact this

whole scoli business will continue to have on your life. Even though

we know the kinds of things that each of us face, the sharing of

those very challenges is what draws us together as a group. After you

have had a chance to spend more time here I do encourage you to write

out your whole story....because your story will be uniqely yours...as

will your surgery and recovery if you get to that point.

I look forward to getting to know you.

Take Care, Cam

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Guest guest

>cam,

thank you so much for your response. it means so much to know others

truly understand. i am so bad on the comp. and my posts never land

where i think they are so i did not find your response until today!

i'm probably driving everyone crazy!

after reading other people's stories i realize how blessed i am to

have found a great surgeon right away. so you have had revision

surgery? the local ortho. told me i will end up being fused from my

neck to my pelvis. but i have not seen dr. lenke yet. i see him on

june 27th. i have moments where i am completely overwhelmed mostly

when i think about my husband and three kids.thanks for listening

(reading)! barb

> Hi Babette,

>

> Welcome to the group. You sound like you have been lucky enough to

> find yourself to knowledgable orthopedists without years of going

> from doctor to doctor looking for answers. I know you will find

lots

> of information and support here and we all welcome hearing more

about

> you.

>

> As you probably know, a number of members have had surgery with

> DrBridwell at ...and several have had surgery with

DrLenke...so

> I am sure you will have the benefit of some of the best advice and

> perspective out there. When is your appointment? I will put it on

> the calendar.

>

> I wanted to acknowledge that what you are going through is huge. I

> don't want you to feel that just because many of us have

experienced

> similar challenges that you should minimize how big an impact this

> whole scoli business will continue to have on your life. Even

though

> we know the kinds of things that each of us face, the sharing of

> those very challenges is what draws us together as a group. After

you

> have had a chance to spend more time here I do encourage you to

write

> out your whole story....because your story will be uniqely

yours...as

> will your surgery and recovery if you get to that point.

>

> I look forward to getting to know you.

>

> Take Care, Cam

>

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  • 1 month later...
Guest guest

Welcome !

Can you post your thyroid related lab results? If you don't have them,

deffinitely demand copies and that's a good place to start at :-)

:-)

In a message dated 7/19/07 5:08:14 PM, heathe51803@... writes:

> Hi, I am new to the group and wanted to post. I am 32, and have been

> experiencing hypothyroid symptoms for about 13 years, although in the

> last 7 they have become disabling. I have seen tons of doctors, and

> no one has diagnosed me yet, although I have been told that I have a

> spot on my thyroid. About 4 months ago, I started a no sugar, no

> artificial sweetener diet, and I go to the gym 5 days a week, so I am

> feeling a bit better than I did before. I eat 900 calories a day and

> I gain weight if I go over that. I'm very intersted in bio medical

> cures/maintenance, so all suggestions are welcome. Thanks,

> in Massachusetts

>

>

>

**************************************

Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

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Guest guest

hi

I don't think you are getting the best thyroid care if you have to subsist on

900 calories a day.

Gracia

Hi, I am new to the group and wanted to post. I am 32, and have been

experiencing hypothyroid symptoms for about 13 years, although in the

last 7 they have become disabling. I have seen tons of doctors, and

no one has diagnosed me yet, although I have been told that I have a

spot on my thyroid. About 4 months ago, I started a no sugar, no

artificial sweetener diet, and I go to the gym 5 days a week, so I am

feeling a bit better than I did before. I eat 900 calories a day and

I gain weight if I go over that. I'm very intersted in bio medical

cures/maintenance, so all suggestions are welcome. Thanks,

in Massachusetts

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

Internal Virus Database is out-of-date.

Checked by AVG Free Edition.

Version: 7.5.476 / Virus Database: 269.10.6/900 - Release Date: 7/14/2007 3:36

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  • 4 weeks later...

Dear Debbie,

While I have been away from the group for awhile, here's another option for a doc for an opinion. One of the surgeon's who did my revision relocated to Miami, his name is Dr. O'Brien, is just great, and I highly recommend him. Address and info below.

Dr. O'Brien

3100 S.W. 62nd.

Miami, FL 33159

305-662-8366

Colorado Springs

[ ] New to Group

Hi! I have been just reading for awhile and decided to introduce myself. My name is Debbie and I had Harrington Rods implanted for Scoliosis from T11 to L4 in 1966. I began having problems about 10 years ago but I only found out about "flatback syndrome" last month. The last 2 years the pain has been so bad I had to give up my job in February of this year and finally gave in to taking pain medication. I have done all the epidurals, facet injections, botox injections and nerve destruction but get no relief from the pain and was beginning to think I was going crazy until finding this board. There is something wrong with me afterall. I live in New Smyrna Beach Florida so after reading all the posts regarding the doctors that are aware of our condition it looks like Dr. Hey is the closest to me so I called his office today and am waiting for a return call to set up an appointment. He will be my first consult and then I'll go from there.Thanks for all the information that is posted here and I look forward to being a part of your group.Debbie J.

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Welcome, Debbie! But sorry to hear you are suffering from flatback. We have a member from Atlanta. She might know if there is someone closer to you than Dr. Hey. I am a patient of Dr. Hey so feel free to ask any questions.

Peggy

[ ] New to Group

Hi! I have been just reading for awhile and decided to introduce myself. My name is Debbie and I had Harrington Rods implanted for Scoliosis from T11 to L4 in 1966. I began having problems about 10 years ago but I only found out about "flatback syndrome" last month. The last 2 years the pain has been so bad I had to give up my job in February of this year and finally gave in to taking pain medication. I have done all the epidurals, facet injections, botox injections and nerve destruction but get no relief from the pain and was beginning to think I was going crazy until finding this board. There is something wrong with me afterall. I live in New Smyrna Beach Florida so after reading all the posts regarding the doctors that are aware of our condition it looks like Dr. Hey is the closest to me so I called his office today and am waiting for a return call to set up an appointment. He will be my first consult and then I'll go from there.Thanks for all the information that is posted here and I look forward to being a part of your group.Debbie J.

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Hi Debbie, Welcome to the group!! Ken.Mark <mj32169@...> wrote: Hi! I have been just reading for awhile and decided to introduce myself. My name is Debbie and I had Harrington Rods implanted for Scoliosis from T11 to L4 in 1966. I began having problems about 10 years ago but I only found out about "flatback syndrome" last month. The last 2 years the pain has been so bad I had to give up my job in February of this year and

finally gave in to taking pain medication. I have done all the epidurals, facet injections, botox injections and nerve destruction but get no relief from the pain and was beginning to think I was going crazy until finding this board. There is something wrong with me afterall. I live in New Smyrna Beach Florida so after reading all the posts regarding the doctors that are aware of our condition it looks like Dr. Hey is the closest to me so I called his office today and am waiting for a return call to set up an appointment. He will be my first consult and then I'll go from there.Thanks for all the information that is posted here and I look forward to being a part of your group.Debbie J.

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Hello Debbie,

I am glad you found your way to us. I am so sorry you are going

through this. If you had HR's placed in 1966 you are one of the

earliest members that I can recall. I guess the good news is you have

made it this far.

The bad news is you got to a point where you had to give up your job

and a lot of other aspects of your life, no doubt...and still no one

was able to help you regain much function or pain relief. That is a

shame...I hope you are able to get yourself to a doctor that, at the

very least, can determine what specific causes of pain you are

experiencing and perhaps offer some solutions.

You are not the first person to have had extensive work ups with

respected local orthopods and still found yourself getting

information that may not really be " of the moment " .

As you have determined, it is very wise idea to get yourself a

consult with a doctor who has a track record with the particular type

of challenges a very fused spine offers(and an aging one at that!).

So yes, you owe it to yourself to see as many doctors as necessary to

get to the point where you feel comfortable with the doctor and have

confidence that his/her evaluation of your needs is full, fair and

complete.

As mentioned, there are other doctors closer to home who may be

worth considering, at least for initial consults, and to lay some

ground work before going ahead with any one of them. You wouldn't

necessarily buy the car that was for sale just because it was on the

lot closest to you...but you might peak in the windows. 's

surgeon, DrO'Brien, was seen by several other members awhile back,

and I believe they felt very good about his evaluation. Here is a

link to his CV:

http://www.spineuniverse.com/mdpage.php?doctorID=782

As Peggy mentioned, a little further north in Atlanta you have the

Emory Spine Center, and you will find members here have had surgery

with Dr Horton or Dr Rhee and have had good things to say about them

and the hospital....so they may be worth considering as well. Here is

a link to their site:

http://www.emoryhealthcare.org/departments/spine/about_us/Overview.htm

l

Finally, the other surgeon I have read about in Florida who has done

revison is Moreno in Clearwater. I think you might have to do

a little more digging on other message boards to find out more about

him, but if he is close to you he might be worth a visit. I pulled

this off the web:

http://www.morenospine.com/testimonials.htm

Obviously, none of this should be construed as a recommendation...it

is just information that you might not have come across if you are

just starting to read here.

We will all be here to help you figure this out...so as questions

arise...ask away.

Take Care, Cam

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One of Dr Bridwell's fellows is going to be practicing in Florida. I

haven't seen him in Dr Bridwell's office lately, so perhaps he is in

Florida by now. His last name is Cronen. I think his first name is

Geoffry, but I would have to check my EOBs from the insurance company

to be sure.

>

> Hello Debbie,

>

> I am glad you found your way to us. I am so sorry you are going

> through this. If you had HR's placed in 1966 you are one of the

> earliest members that I can recall. I guess the good news is you

have

> made it this far.

>

> The bad news is you got to a point where you had to give up your

job

> and a lot of other aspects of your life, no doubt...and still no

one

> was able to help you regain much function or pain relief. That is a

> shame...I hope you are able to get yourself to a doctor that, at

the

> very least, can determine what specific causes of pain you are

> experiencing and perhaps offer some solutions.

>

> You are not the first person to have had extensive work ups with

> respected local orthopods and still found yourself getting

> information that may not really be " of the moment " .

>

> As you have determined, it is very wise idea to get yourself a

> consult with a doctor who has a track record with the particular

type

> of challenges a very fused spine offers(and an aging one at that!).

> So yes, you owe it to yourself to see as many doctors as necessary

to

> get to the point where you feel comfortable with the doctor and

have

> confidence that his/her evaluation of your needs is full, fair and

> complete.

>

> As mentioned, there are other doctors closer to home who may

be

> worth considering, at least for initial consults, and to lay some

> ground work before going ahead with any one of them. You wouldn't

> necessarily buy the car that was for sale just because it was on

the

> lot closest to you...but you might peak in the windows. 's

> surgeon, DrO'Brien, was seen by several other members awhile back,

> and I believe they felt very good about his evaluation. Here is a

> link to his CV:

>

> http://www.spineuniverse.com/mdpage.php?doctorID=782

>

> As Peggy mentioned, a little further north in Atlanta you have the

> Emory Spine Center, and you will find members here have had surgery

> with Dr Horton or Dr Rhee and have had good things to say about

them

> and the hospital....so they may be worth considering as well. Here

is

> a link to their site:

>

>

http://www.emoryhealthcare.org/departments/spine/about_us/Overview.htm

> l

>

> Finally, the other surgeon I have read about in Florida who has

done

> revison is Moreno in Clearwater. I think you might have to

do

> a little more digging on other message boards to find out more

about

> him, but if he is close to you he might be worth a visit. I pulled

> this off the web:

>

> http://www.morenospine.com/testimonials.htm

>

> Obviously, none of this should be construed as a

recommendation...it

> is just information that you might not have come across if you are

> just starting to read here.

>

> We will all be here to help you figure this out...so as questions

> arise...ask away.

>

> Take Care, Cam

>

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Hi Debbie,

Welcome to the group.....let us know about your appointment with Dr. Hey.

Have you read the information in files, members stories, articles, etc...

All the information you can get, will help with deciphering what happens

at your doctor appt. There is even a list of questions for surgeons that you

can use as a baseline. We are here to offer you support whatever your decision

is.

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Hi Debbie,

I live in Atlanta and had my revision surgery almost two years ago by

Dr. Horton at the Emory Spine Center. I had been seeing him for at

least 7 years before I decided to have the revision. I cannot say

enough about how knowledgeable he is and how great my entire

experience has been. I was first told I had Flatback when I saw a

doctor at the Texas Back Institute in Plano, about 12 years ago, and

Dr. Horton confirmed it when I moved here.

I'm 58 years old so, no spring chick, but I am able to do just about

anything I want. The surgery was no piece of cake (who's is???) but

his nurse (who is also a saint) was there anytime I needed her

to answer questions post-op. I think my recovery went extremely

well. I had anterior/posterior surgery 5 days apart in September of

2005. In January of 2006 I felt well enough to travel to Argentina

for a little vacation and in May of 06 he gave me permission to start

playing golf again (orginally he told me it would be at least a year

and even then he said " no promises " ). I went back to golf slowly,

but by July 06 I walked 18 holes in Scotland! Following surgery I

walked regularly and gradually added swimming. (Water aerobics didn't

work for me.) Outside of a recent muscle tear, I've been pain free!

I strongly suggest you give Dr. Horton's office a call as you move

forward with your research in selecting a Dr. that works for you.

Please let me know if you have any questions.

Dianne

>

> Hi! I have been just reading for awhile and decided to introduce

> myself. My name is Debbie and I had Harrington Rods

implanted

> for Scoliosis from T11 to L4 in 1966. I began having problems about

10

> years ago but I only found out about " flatback syndrome " last

month.

> The last 2 years the pain has been so bad I had to give up my job

in

> February of this year and finally gave in to taking pain

medication. I

> have done all the epidurals, facet injections, botox injections and

> nerve destruction but get no relief from the pain and was beginning

to

> think I was going crazy until finding this board. There is

something

> wrong with me afterall.

> I live in New Smyrna Beach Florida so after reading all the posts

> regarding the doctors that are aware of our condition it looks like

Dr.

> Hey is the closest to me so I called his office today and am

waiting

> for a return call to set up an appointment. He will be my first

consult

> and then I'll go from there.

> Thanks for all the information that is posted here and I look

forward

> to being a part of your group.

> Debbie J.

>

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Hi, Debbie, and welcome.

If K. hasn't already mentioned it, there's a Dr. O'Brien in Florida, who worked with Dr. Kumar to do her revision, when he was in Colorado. May be closer to you than Dr. Hey.

I'm sorry you have this problem, but glad you've found us, learned what's wrong, and are taking action!

All the best,

Sharon

[ ] New to Group

Hi! I have been just reading for awhile and decided to introduce myself. My name is Debbie and I had Harrington Rods implanted for Scoliosis from T11 to L4 in 1966. I began having problems about 10 years ago but I only found out about "flatback syndrome" last month. The last 2 years the pain has been so bad I had to give up my job in February of this year and finally gave in to taking pain medication. I have done all the epidurals, facet injections, botox injections and nerve destruction but get no relief from the pain and was beginning to think I was going crazy until finding this board. There is something wrong with me afterall. I live in New Smyrna Beach Florida so after reading all the posts regarding the doctors that are aware of our condition it looks like Dr. Hey is the closest to me so I called his office today and am waiting for a return call to set up an appointment. He will be my first consult and then I'll go from there.Thanks for all the information that is posted here and I look forward to being a part of your group.Debbie J.

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~ Welcome to the family! You are in a wonderful spot! I am so sorry to hear that you have had to endure so very much trauma...I know that you will find tons of care and support with this group, the best way to get help is to ask!! There are many members here that have found that while we may not all have the exact same experiences, we each share alot of things that are very similiar. Navigating this road is tough but please know that you will not be alone!! Ask as many questions as you can....there are no stupid questions! Knowledge is power!! I wish you all the strength you will need as you close the chapters of the past and start writting the new chapter that is ahead of you!! SuzieQluv2icesk8lots <luv2icesk8lots@...> wrote: Hi all, thanks for making such a great group. I have been lurking for about a month and have finally decided to post. My name is , and I am a bit "different" than most of you but still suffer from flatback. I am not an original Harrington Rod patient, rather I had my original spinal fusion in Feb of 2005 (T4-L2) to correct a curve of around 50*. After surgery I developed pneumonia, part of my right lung collapsed and filled up with fluid so about a week after getting out of the hospital I went back to the ER unable to breathe. I continued to have problems until Dec of 2005 when my right rod was

removed because it was causing aggrivation of muscle/nerve (I had also lost function of my right arm). I thought that all was great after the second surgery, but a few months later I started having horrible low back pain and later found out that I had herniated a disc below the fusion, and a couple months after the MRI showed the herniation, x-rays showed that the lumbar curve was progressing below the fusion. Back to the OR I went to extend the fusion down to L5. This happened in Dec 06.I assumed that after a 3rd surgery that all would be great, but I did not even get 1 pain free year. The surgery pain never fully subsided when I realized that I had a horrible pain again, not just "post-op pain". My original surgeon was quick to dismiss my concerns saying that "everything looked normal and there was nothing he could do for me surgically", so I got a second opinion and found out that I have flatback, loose

screws at L5, pseudoarthrosis, a herniated disc at L4-L5 (the original location of my herniated disc, which was *supposed* to be removed during the 3rd surgery), a curve forming above my fusion, and numerous smaller things that showed up on the MRI and CT Myelogram. Since leaving my original surgeon, I have seen Dr. Deckey in Orange, and Dr. Pashman at Cedar-Saini. I will be having surgery with Dr. Deckey sometime in the upcoming months to correct the sagittal imbalance, loose screws, pseudoarthrosis, herniated disc, and others. He plans on doing an anterior surgery to remove the discs and insert bone wedge at L4-5 and L5-S1 to prevent motion in the joints, and then flip me over and take out the new (old) hardware from L2-5 and replace it down to S1 since the screws in L5 are loose (and I have small pedicles). I am nervous about the anterior procedure as this is the first time I will have anything

done through the front. Does it take a lot longer for the intestines to wake up after anterior surgery? Is the risk of an ileus greater with this type of surgery? How is the discomfort in the front vs. the back? I am really excited to be upright again. It really frustrates me to go out in public and have people ask me what happened (I have a limp from a leg length discrepancy and being hunched over from the flatback) does not allow one to "blend in" to a crowd. Sorry this is so long. Thanks for reading this and any replies I might get.

Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out.

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Hi ...

My understanding is that there is no chance of an ileus with posterior

surgery. With anterior abdominal surgery, the risk is relatively

high, but I don't think I've ever heard the percentage. You can

reduce your risk considerably by not eating or drinking (beyond a few

small ice chips occasionally) until bowel sounds return.

I think you're in good hands with Dr. Deckey. He was well respected

(at least by patients) when he did his fellowship at UCSF under Dr.

Bradford.

Regards,

>

> Hi all, thanks for making such a great group. I have been lurking for

> about a month and have finally decided to post.

>

> My name is , and I am a bit " different " than most of you but

> still suffer from flatback. I am not an original Harrington Rod

> patient, rather I had my original spinal fusion in Feb of 2005 (T4-

> L2) to correct a curve of around 50*. After surgery I developed

> pneumonia, part of my right lung collapsed and filled up with fluid

> so about a week after getting out of the hospital I went back to the

> ER unable to breathe.

>

> I continued to have problems until Dec of 2005 when my right rod was

> removed because it was causing aggrivation of muscle/nerve (I had

> also lost function of my right arm).

> I thought that all was great after the second surgery, but a few

> months later I started having horrible low back pain and later found

> out that I had herniated a disc below the fusion, and a couple months

> after the MRI showed the herniation, x-rays showed that the lumbar

> curve was progressing below the fusion. Back to the OR I went to

> extend the fusion down to L5. This happened in Dec 06.

>

> I assumed that after a 3rd surgery that all would be great, but I did

> not even get 1 pain free year. The surgery pain never fully subsided

> when I realized that I had a horrible pain again, not just " post-op

> pain " . My original surgeon was quick to dismiss my concerns saying

> that " everything looked normal and there was nothing he could do for

> me surgically " , so I got a second opinion and found out that I have

> flatback, loose screws at L5, pseudoarthrosis, a herniated disc at L4-

> L5 (the original location of my herniated disc, which was *supposed*

> to be removed during the 3rd surgery), a curve forming above my

> fusion, and numerous smaller things that showed up on the MRI and CT

> Myelogram.

>

> Since leaving my original surgeon, I have seen Dr. Deckey in

> Orange, and Dr. Pashman at Cedar-Saini. I will be having surgery with

> Dr. Deckey sometime in the upcoming months to correct the sagittal

> imbalance, loose screws, pseudoarthrosis, herniated disc, and others.

> He plans on doing an anterior surgery to remove the discs and insert

> bone wedge at L4-5 and L5-S1 to prevent motion in the joints, and

> then flip me over and take out the new (old) hardware from L2-5 and

> replace it down to S1 since the screws in L5 are loose (and I have

> small pedicles).

>

> I am nervous about the anterior procedure as this is the first time I

> will have anything done through the front. Does it take a lot longer

> for the intestines to wake up after anterior surgery? Is the risk of

> an ileus greater with this type of surgery? How is the discomfort in

> the front vs. the back?

>

> I am really excited to be upright again. It really frustrates me to

> go out in public and have people ask me what happened (I have a limp

> from a leg length discrepancy and being hunched over from the

> flatback) does not allow one to " blend in " to a crowd.

>

> Sorry this is so long. Thanks for reading this and any replies I

> might get.

>

>

>

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  • 2 months later...

Hi Group. I have recently diagnosed with Lyme Disease. I've been sick since late

03.

L. C.

Theresa <lionofjudah7@...> wrote:

I would like to know if anyone else has experienced seeing little

squiggly things when you look at a solid light color. Lately I'm

seeing what looks like little clear worms. It's more pronounced when I

focus on say a light blue color. It's not floaters like I would get if

I get up too fast or something like that. This is totally different.

I mentioned it to my doctor and he says it is the toxins built up in my

system and has put me on a detoxer for it. It's pretty weird and hard

to explain to even my husband.

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

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  • 3 weeks later...

Kate -

Find a LLMD - Lyme Literate Medical Doctor - as soon as you can.

If you have not found one by the time you get my message, email me offline.

Ann

aprow@...

-- [ ] New To Group

Hi everyone, I'm new to the group, and I'm wondering if anyone has

some further ideas.

I was diagonosed with lyme in 2004. I found the tick (no idea how

long it was on), and pulled it off. At the time, I lived in

Massachusetts in the woods and this was a common occurance. 3 Days

later, I was in Montreal Visiting family and I noticed a rash or

something. It got worse and worse, and of course looked like a

bullseye. I headed home, and the drive home was the worst of my

life. I started getting very sick. My muscles started stiffing up

to the point where I couldn't even look in my side mirror. It was

the 6 hour ride from hell. I felt like I had the flu. The next

day, I went to the doctor, who suspected lyme disease. I was given

some antibiotics. End of story.

Currently, I have been having weird shooting pains, cognitive issues

with speaking, jaw pain, and unfortunately my doctor thinks

seizures. I've had an MRI and an EEG. He wants me to go back for

another eeg because something looked questionable on the first. He

thinks they are complex partial siezures. I told him about my lyme

in the past. He also did bloodwork, but said there is no lyme in my

system, and therefore no connection.

The research done on my own says that this may not be true. I've

tried to present him with this, but he says that the information is

wrong. I also told him that I was treated for 5 or 6 weeks for

lyme, and his comment was " why the hell would anyone presscribe

antibiotics for 6 weeks? "

I am looking for a new doctor (neurologist, I guess). I have little

doubt that I am having siezures, as I am experiencing them, and

others have witnessed it. He says that most siezures don't have a

cause. I feel like the lyme thing should be investigated further,

but he's not interested.

I live in southeastern massachusetts. I would be willing to see a

doctor almost anywhere. I'd go to boston or to anywhere in RI.

Does anyone have any ideas, advice, referrals, etc?

Any help would be greatly appreciated!!!!!!

~Kate

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You may want to see Dr. Glenn Rothfeld, Director of Whole Health New

England, in Arlington, MA. He is an excellent LLMD and outstanding

physician and author of several books. You will be hard pressed to find a

more competent doctor. I travel from NYC to Boston for his exclusive care

as I have found no other physician of his caliber.

Just go to www.wholehealthne.com and you will find contact information. Best

of Luck to you....

[ ] New To Group

Hi everyone, I'm new to the group, and I'm wondering if anyone has

some further ideas.

I was diagonosed with lyme in 2004. I found the tick (no idea how

long it was on), and pulled it off. At the time, I lived in

Massachusetts in the woods and this was a common occurance. 3 Days

later, I was in Montreal Visiting family and I noticed a rash or

something. It got worse and worse, and of course looked like a

bullseye. I headed home, and the drive home was the worst of my

life. I started getting very sick. My muscles started stiffing up

to the point where I couldn't even look in my side mirror. It was

the 6 hour ride from hell. I felt like I had the flu. The next

day, I went to the doctor, who suspected lyme disease. I was given

some antibiotics. End of story.

Currently, I have been having weird shooting pains, cognitive issues

with speaking, jaw pain, and unfortunately my doctor thinks

seizures. I've had an MRI and an EEG. He wants me to go back for

another eeg because something looked questionable on the first. He

thinks they are complex partial siezures. I told him about my lyme

in the past. He also did bloodwork, but said there is no lyme in my

system, and therefore no connection.

The research done on my own says that this may not be true. I've

tried to present him with this, but he says that the information is

wrong. I also told him that I was treated for 5 or 6 weeks for

lyme, and his comment was " why the hell would anyone presscribe

antibiotics for 6 weeks? "

I am looking for a new doctor (neurologist, I guess). I have little

doubt that I am having siezures, as I am experiencing them, and

others have witnessed it. He says that most siezures don't have a

cause. I feel like the lyme thing should be investigated further,

but he's not interested.

I live in southeastern massachusetts. I would be willing to see a

doctor almost anywhere. I'd go to boston or to anywhere in RI.

Does anyone have any ideas, advice, referrals, etc?

Any help would be greatly appreciated!!!!!!

~Kate

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Kate,

Lyme could be in your brain, not in your blood, so it is hard to detect with

standard testing. Any idea what labs were ordered? I got sicker after my

original Lyme treatment, if you have neurological Lyme disease, it is not

cured with some simple oral antibiotics. I still have neuro symptoms after two

IV treatments. When you talk about seizures, does your whole body shake or is

it like one arm at a time shaking for example? I have tremors from Lyme

which kind of feel like seizures, but you are fully awake. Honestly I think

you

probably do still have Lyme, your symptoms sound like Lyme symptoms to me.

But, then again I am not a doctor , I am just a fellow patient.

Dagmar

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products.

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Kate,

Sorry to read of your journey so far, but am glad that

you both know the 'date/time/place' of your bite!

Suggestion: Try to find any published research that

will show that people have tested negative for Lyme

and/or co-infections; treated; and then tested

positive. This can sometimes happen if too short a

course of treatment happened at the on-set of illness

OR after having the illness for many years.

An example for Babesia:

A Fatal Case of Babesiosis in Missouri: Identification

of Another Piroplasm That Infects Humans

Barbara L. Herwaldt, MD, MPH; H. Persing, MD,

PhD; A. Precigout, PhD; W. L. Goff, PhD; Dane A.

Mathiesen, BS; Philip W. , MD; M. L. Eberhard,

PhD; and Andre F. Gorenflot, PhD

1 April 1996 | Volume 124 Issue 7 | Pages 643-650

“… Medical personnel should be aware that patients in

the United States can have life-threatening babesiosis

even though they are seronegative to B. microti and

WA1 antigen.”

Since you have been able to trace your infection/bite

to the Eastern US States, the following won't apply to

you (i.e. B. Microti is essentially found on the

Eastern seaboard)... but for those of us infected in

other places including Europe:

Available from: URL:

http://www.cdc.gov/ncidod/EID/vol9no8/02-0748.htm

Molecular Characterization of a Non–Babesia divergens

Organism Causing Zoonotic Babesiosis in Europe

“… no clinical trials in humans have evaluated the

effectiveness of any antimicrobial regimens for

treatment of Babesia infection not caused by B.

microti.”

An example for Bartonella:

Culture of Bartonella quintana and Bartonella henselae

from human samples: a 5-year experience (1993 to

1998).

J Clin Microbiol. 1999 Jun;37(6):1899-905

“… previous antibiotic therapy significantly affected

results of blood culture; no patient who had been

administered antibiotics yielded a positive blood

culture, whereas 80% of patients with no previous

antibiotic therapy yielded positive blood cultures (P

= 0.0006).”

Good luck!

/ Charolette :-)

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  • 2 weeks later...

Get the MRI as soon as possible! Don't put it off.

Your neurologist should be the one to explain the

diagnosis to you - not someone here. Once you have a

diagnosis, you will be able to find a group

specifically designed for your condition. Good luck,

________________________________________________________________________________\

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  • 1 month later...

Hi,

What happened with the natural? Did you not do well on it? What id your diet

like? Are you vegetarian or anything? How about water, do you drink a lot of

it? Also, have you considered juicing like first thing in the morning on an

empty stomach and not eating 30 minutes after. Have you considered doing a

cleanse, like colon or liver?

www.ariseandshine.com

www.modernmanna.org

Blessings,

monicavcttx <monicavcttx@...> wrote:

I am new to this group and I am very excited to learn more about

hypothyroidism. I have a VERY challenging thyroid. I have tried the

natural medicine and now I am on synthetic. I gained several pounds

over the last 3 years. I have decided to hit the gym over the last

year. I really love my time at the gym. I workout 4-6 days a week. I

run on the treadmill,ride 5 miles on the bicycle,spend 30 minutes on

the eliptical machine on the weight loss program,and participate in a

Powerpump class 2 times a week. I do watch what I eat and only drink

water. I have given up all sodas and tea. In the last 9 months of

working out,I have lost only 7 pounds!!! I do see a difference in

muscle toning,but the weight loss is slow process. My doctor feels

that I am doing fine. I believe things could be better. Does anyone

have any advice on what I can do to see better results.

Thanks---

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Hi,

What happened with the natural? Did you not do well on it? What id your diet

like? Are you vegetarian or anything? How about water, do you drink a lot of

it? Also, have you considered juicing like first thing in the morning on an

empty stomach and not eating 30 minutes after. Have you considered doing a

cleanse, like colon or liver?

www.ariseandshine.com

www.modernmanna.org

Blessings,

monicavcttx <monicavcttx@...> wrote:

I am new to this group and I am very excited to learn more about

hypothyroidism. I have a VERY challenging thyroid. I have tried the

natural medicine and now I am on synthetic. I gained several pounds

over the last 3 years. I have decided to hit the gym over the last

year. I really love my time at the gym. I workout 4-6 days a week. I

run on the treadmill,ride 5 miles on the bicycle,spend 30 minutes on

the eliptical machine on the weight loss program,and participate in a

Powerpump class 2 times a week. I do watch what I eat and only drink

water. I have given up all sodas and tea. In the last 9 months of

working out,I have lost only 7 pounds!!! I do see a difference in

muscle toning,but the weight loss is slow process. My doctor feels

that I am doing fine. I believe things could be better. Does anyone

have any advice on what I can do to see better results.

Thanks---

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Unfortunately there are many doctors that can't/won't believe us when we say we

are dieting

and/or exercising. These doctors don't know very much about thyroid disease,

or they would

know we are telling the truth. With the regimen you described, you should have

been losing

at least a pound or two a month. I don't consider 7 pounds " fine " . I would

think finding a new

doctor might be a good idea for you.

Roni

monicavcttx <monicavcttx@...> wrote:

I am new to this group and I am very excited to learn more about

hypothyroidism. I have a VERY challenging thyroid. I have tried the

natural medicine and now I am on synthetic. I gained several pounds

over the last 3 years. I have decided to hit the gym over the last

year. I really love my time at the gym. I workout 4-6 days a week. I

run on the treadmill,ride 5 miles on the bicycle,spend 30 minutes on

the eliptical machine on the weight loss program,and participate in a

Powerpump class 2 times a week. I do watch what I eat and only drink

water. I have given up all sodas and tea. In the last 9 months of

working out,I have lost only 7 pounds!!! I do see a difference in

muscle toning,but the weight loss is slow process. My doctor feels

that I am doing fine. I believe things could be better. Does anyone

have any advice on what I can do to see better results.

Thanks---

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

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I think Armour is the best medicine for weight loss, although I know some

skinny ppl on T4 meds alone. what do you mean you have tried natural medicine?

OTC stuff? most docs undertreat hypos.

Once you get proper treatment you will not have to count every calorie and

power pump/work out etc nonstop. although if the gym is fun for you then

great! I have never gone to a gym :)

you might have to look for a doc who knows a little more about the endocrine

system.

Gracia

I am new to this group and I am very excited to learn more about

hypothyroidism. I have a VERY challenging thyroid. I have tried the

natural medicine and now I am on synthetic. I gained several pounds

over the last 3 years. I have decided to hit the gym over the last

year. I really love my time at the gym. I workout 4-6 days a week. I

run on the treadmill,ride 5 miles on the bicycle,spend 30 minutes on

the eliptical machine on the weight loss program,and participate in a

Powerpump class 2 times a week. I do watch what I eat and only drink

water. I have given up all sodas and tea. In the last 9 months of

working out,I have lost only 7 pounds!!! I do see a difference in

muscle toning,but the weight loss is slow process. My doctor feels

that I am doing fine. I believe things could be better. Does anyone

have any advice on what I can do to see better results.

Thanks---

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