Another Newbie

[Guest guest]

Hi Dawn,

I feel the same way, I have had so many things wrong it wears me out.My

doctors are not helping much at all.I took something for my toenail fungus

and then when they almost killed me with anitbiotics it came back along with

many others too.At this point, when I had a blood clot in my lung, they sent

me home taking coumadin which is a blood thinner and for weeks I kept having

pain in my right lower back and I complained and finally they did a blood

test for my liver and found out that it was at toxic levels.So they had to

stop the blood thinner and now they will not even do anything because they

are afraid to.They will not give me anything that may hurt my liver ,but yet

they won't do anything for my liver either.I am so frustrated I could cry,

and do sometimes.I am in pain all the time.I have arthritis, low blood

sugar, headaches,blood clots in my calf of my right leg, over weight, get

some kind of mild itching in my vaginal area,I have ear aches, a scaley rash

all over me,and a fever on and off all the time of 100, hot and cold

flashes. I AM A MESS!!!But no one will help me.I am trying not to get

depressed, but it is difficult...any help here is appreciated.

Peace*

Fran

>From: Nascar0531@...

>Reply-candidiasisonelist

>candidiasisonelist

>Subject: Another newbie

>Date: Sat, 8 Jan 2000 14:29:46 EST

>

>Hi everyone,

>

>I just joined this list last week and I have a few questions for all....

>

>1) I have been prescribed Lamisil tablets for sin/nail fungal infections,

>has anyone found this medication to help with the rest of the candida

>problem

>digestive?

>

>2) I was also prescribed Diflucan for the internal yeast overgrowth...the

>amount is 1 pill per week for 3 weeks...has anyone found that to be an

>adequate amount to cure?

>

>3) The only thing that has seemed to help me in the 2 years I have been

>struggling with this problem has been to fast for a day or 2 on nothing but

>meat broth and small sips of juice (to get blood sugar from going too low,

>I

>am also hypoglycemic). Has anyone else tried this approach and did it help

>you?

>

>I became " infested " after numerous antibiotic treatments. It was almost

>more

>frustrating trying to get a diagnose these past 2 years as actually feeling

>as terrible as yeast overgrowth makes me feel. I am very happy to have

>found

>this least and find all of the information I have read so far to be very

>useful :-)

>Thanks,

>Dawn

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Hi Jukka,

I totally understand what you are saying.I had gallstones when I was 14

and no one could believe I had them.I was diagnosed with Bipolar illness

about 10 years ago and ever since, alot of my pain has been my

imagination.So I understand about doctors that think we are

hypochondriacs.But in the meantime, my quality of life has diminished and I

become sad when I see life passing me by some days, and I have no choice.I

have many blessing to be thankful for, but pain and problems cause me to

stay home many times.I am still looking for another good doctor.I had one

but he returned to the E.R. and now cannot have private patients. I was so

upset because he would at least try herbs sometime and not always want to

push pills on me or ignore me.He was great.Well, I better go for now...take

care

Peace,

Fran

>From: Jukka E Isosaari <jei@...>

>Reply-candidiasisonelist

>candidiasisonelist

>Subject: Re: Another newbie

>Date: Sat, 8 Jan 2000 22:23:10 +0200 (EET)

>

>On Sat, 8 Jan 2000 Nascar0531@... wrote:

>

> > From: Nascar0531@...

> >

> > Hi everyone,

> >

> > I just joined this list last week and I have a few questions for all....

>...

> > I became " infested " after numerous antibiotic treatments. It was almost

>more

> > frustrating trying to get a diagnose these past 2 years as actually

>feeling

> > as terrible as yeast overgrowth makes me feel. I am very happy to have

>found

> > this least and find all of the information I have read so far to be very

> > useful :-)

>

>I think most of us have had very similar experiences.

>

>It's very annoying how today's " doctors " are just " 20-minute "

>appointments -> diagnose -> order medicine or tests -> order medicine

>etc, -automatons. Then they give us shit when we don't fit their

>learned profiles of diseases and don't get cured and they clearly wish

>we'd just get lost. Then they suggest we are hypochondriacs, etc to

>get rid of us.

>

>A computer program could do a much better job, and it wouldn't start

>hinting and suggesting about hypochondria when you don't fit the

>picture.

>

>Everyone I know who has had candida (in Finland) has been blamed to be

>a hypochondriac by the doctors. It isn't an " accepted disease " here,

>and only a few doctors even know of it's existence, much less are

>willing to help people get cured of it. One doctor just told me to get

>myself slowly used to eating yeast. - Just when I had noticed that it

>was the main cause of my symptoms! Like I wanted to be sick all of the

>time! Then I was refused further diagnosis and any treatment as the

>Candidiasis is not " accepted " as cureable or as a disease at all. ->

>So much for the governmental health system here that basically first

>told me I was a hypochondriac and then to stay sick, when I myself

>found out the cause - the doctor later agreeing with my diagnosis

>herself. Still leaving me with no hope of any cure or any treatment.

>

>If your " disease " isn't officially accepted here, then you'd better

>stay well in Finland. The governmental health system doesn't accept

>any new diseases or cover them unless the rest of the world can prove

>with strong evidence that they can be cured and with cheap medicines,

>that aren't " experimental " in any way. The doctors here also don't

>give a shit even if you're sick 50% of your working time. They're just

>happy to get lots of appointments from you.

>

>You know, I bet there are no *real* hypochondriacs in the world. Only

>doctors who blame their own incapability, inability and insecurity to

>correctly diagnose and identify the diseases on the patients. Most

>commonly these are now metal (amalgam) poisonings and yeast diseases,

>that all used be 100% hypochondriac diseases. There are ever more such

>diseases (getting bitten by a zool causes one disease that causes

>muscle cramps and pains and wasn't diagnosable for a loong time,

>until recently.) Most of all these diseases are not " real " here, yet

>there are ever more people with them now that antibiotics are common

>and kiling off anti-yeast bacteria in people. More publicity and

>research is what is needed. And a change of attitude in the medical

>system!

>

>Doctors should be responsible for their patients' health and

>_their_work_capability_ in the sense that they'd get bonuses when the

>patients agree they did get cured and are able to work better. Not

>just get paid by the visit, as it encourages them to get patients to

>visit them zillions of times without any use, like they apparently do

>now in Finland. Also some public health servants make false

>appointments and misuse the public health system here. Doctors are

>getting to be greedy like lawyers, only lawyers can have their rewards

>be dependent on the results they get. Doctors all over the world

>should have the same kind of contracts. No cure - no bonus. Now it's

>just " an appointment - a bonus " , and it doesn't much matter here if

>the patients get cured or not.

>

>++ J

>

>

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

On Sat, 8 Jan 2000 Nascar0531@... wrote:

> From: Nascar0531@...

>

> Hi everyone,

>

> I just joined this list last week and I have a few questions for all....

....

> I became " infested " after numerous antibiotic treatments. It was almost more

> frustrating trying to get a diagnose these past 2 years as actually feeling

> as terrible as yeast overgrowth makes me feel. I am very happy to have found

> this least and find all of the information I have read so far to be very

> useful :-)

I think most of us have had very similar experiences.

It's very annoying how today's " doctors " are just " 20-minute "

appointments -> diagnose -> order medicine or tests -> order medicine

etc, -automatons. Then they give us shit when we don't fit their

learned profiles of diseases and don't get cured and they clearly wish

we'd just get lost. Then they suggest we are hypochondriacs, etc to

get rid of us.

A computer program could do a much better job, and it wouldn't start

hinting and suggesting about hypochondria when you don't fit the

picture.

Everyone I know who has had candida (in Finland) has been blamed to be

a hypochondriac by the doctors. It isn't an " accepted disease " here,

and only a few doctors even know of it's existence, much less are

willing to help people get cured of it. One doctor just told me to get

myself slowly used to eating yeast. - Just when I had noticed that it

was the main cause of my symptoms! Like I wanted to be sick all of the

time! Then I was refused further diagnosis and any treatment as the

Candidiasis is not " accepted " as cureable or as a disease at all. ->

So much for the governmental health system here that basically first

told me I was a hypochondriac and then to stay sick, when I myself

found out the cause - the doctor later agreeing with my diagnosis

herself. Still leaving me with no hope of any cure or any treatment.

If your " disease " isn't officially accepted here, then you'd better

stay well in Finland. The governmental health system doesn't accept

any new diseases or cover them unless the rest of the world can prove

with strong evidence that they can be cured and with cheap medicines,

that aren't " experimental " in any way. The doctors here also don't

give a shit even if you're sick 50% of your working time. They're just

happy to get lots of appointments from you.

You know, I bet there are no *real* hypochondriacs in the world. Only

doctors who blame their own incapability, inability and insecurity to

correctly diagnose and identify the diseases on the patients. Most

commonly these are now metal (amalgam) poisonings and yeast diseases,

that all used be 100% hypochondriac diseases. There are ever more such

diseases (getting bitten by a zool causes one disease that causes

muscle cramps and pains and wasn't diagnosable for a loong time,

until recently.) Most of all these diseases are not " real " here, yet

there are ever more people with them now that antibiotics are common

and kiling off anti-yeast bacteria in people. More publicity and

research is what is needed. And a change of attitude in the medical

system!

Doctors should be responsible for their patients' health and

_their_work_capability_ in the sense that they'd get bonuses when the

patients agree they did get cured and are able to work better. Not

just get paid by the visit, as it encourages them to get patients to

visit them zillions of times without any use, like they apparently do

now in Finland. Also some public health servants make false

appointments and misuse the public health system here. Doctors are

getting to be greedy like lawyers, only lawyers can have their rewards

be dependent on the results they get. Doctors all over the world

should have the same kind of contracts. No cure - no bonus. Now it's

just " an appointment - a bonus " , and it doesn't much matter here if

the patients get cured or not.

++ J

[Guest guest]

Drink lots of clean water. -> It helps your body to get rid of

poisons and (AFAIK) helps in thinning your blood without any

chemicals.

http://www.health-truth.com/TourProgram.htm

Drinking lots of water has done wonders for me. :-)

++ J

On Sat, 8 Jan 2000, Fran Hafey wrote:

> From: " Fran Hafey " <mistyfh@...>

>

> Hi Dawn,

> I feel the same way, I have had so many things wrong it wears me out.My

> doctors are not helping much at all.I took something for my toenail fungus

> and then when they almost killed me with anitbiotics it came back along with

> many others too.At this point, when I had a blood clot in my lung, they sent

> me home taking coumadin which is a blood thinner and for weeks I kept having

> pain in my right lower back and I complained and finally they did a blood

> test for my liver and found out that it was at toxic levels.So they had to

> stop the blood thinner and now they will not even do anything because they

> are afraid to.They will not give me anything that may hurt my liver ,but yet

> they won't do anything for my liver either.I am so frustrated I could cry,

> and do sometimes.I am in pain all the time.I have arthritis, low blood

> sugar, headaches,blood clots in my calf of my right leg, over weight, get

> some kind of mild itching in my vaginal area,I have ear aches, a scaley rash

> all over me,and a fever on and off all the time of 100, hot and cold

> flashes. I AM A MESS!!!But no one will help me.I am trying not to get

> depressed, but it is difficult...any help here is appreciated.

> Peace*

> Fran

> >From: Nascar0531@...

> >Reply-candidiasisonelist

> >candidiasisonelist

> >Subject: Another newbie

> >Date: Sat, 8 Jan 2000 14:29:46 EST

> >

> >Hi everyone,

> >

> >I just joined this list last week and I have a few questions for all....

> >

> >1) I have been prescribed Lamisil tablets for sin/nail fungal infections,

> >has anyone found this medication to help with the rest of the candida

> >problem

> >digestive?

> >

> >2) I was also prescribed Diflucan for the internal yeast overgrowth...the

> >amount is 1 pill per week for 3 weeks...has anyone found that to be an

> >adequate amount to cure?

> >

> >3) The only thing that has seemed to help me in the 2 years I have been

> >struggling with this problem has been to fast for a day or 2 on nothing but

> >meat broth and small sips of juice (to get blood sugar from going too low,

> >I

> >am also hypoglycemic). Has anyone else tried this approach and did it help

> >you?

> >

> >I became " infested " after numerous antibiotic treatments. It was almost

> >more

> >frustrating trying to get a diagnose these past 2 years as actually feeling

> >as terrible as yeast overgrowth makes me feel. I am very happy to have

> >found

> >this least and find all of the information I have read so far to be very

> >useful :-)

> >Thanks,

> >Dawn

>

> ______________________________________________________

> Get Your Private, Free Email at http://www.hotmail.com

>

>

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

[Guest guest]

Amen to all you said. It is the truth. Myra

Re: Another newbie

From: Jukka E Isosaari <jei@...>

On Sat, 8 Jan 2000 Nascar0531@... wrote:

> From: Nascar0531@...

>

> Hi everyone,

>

> I just joined this list last week and I have a few questions for all.....

...

> I became " infested " after numerous antibiotic treatments. It was almost

more

> frustrating trying to get a diagnose these past 2 years as actually

feeling

> as terrible as yeast overgrowth makes me feel. I am very happy to have

found

> this least and find all of the information I have read so far to be very

> useful :-)

I think most of us have had very similar experiences..

It's very annoying how today's " doctors " are just " 20-minute "

appointments -> diagnose -> order medicine or tests -> order medicine

etc, -automatons. Then they give us shit when we don't fit their

learned profiles of diseases and don't get cured and they clearly wish

we'd just get lost. Then they suggest we are hypochondriacs, etc to

get rid of us..

A computer program could do a much better job, and it wouldn't start

hinting and suggesting about hypochondria when you don't fit the

picture..

Everyone I know who has had candida (in Finland) has been blamed to be

a hypochondriac by the doctors. It isn't an " accepted disease " here,

and only a few doctors even know of it's existence, much less are

willing to help people get cured of it. One doctor just told me to get

myself slowly used to eating yeast. - Just when I had noticed that it

was the main cause of my symptoms! Like I wanted to be sick all of the

time! Then I was refused further diagnosis and any treatment as the

Candidiasis is not " accepted " as cureable or as a disease at all. ->

So much for the governmental health system here that basically first

told me I was a hypochondriac and then to stay sick, when I myself

found out the cause - the doctor later agreeing with my diagnosis

herself. Still leaving me with no hope of any cure or any treatment..

If your " disease " isn't officially accepted here, then you'd better

stay well in Finland. The governmental health system doesn't accept

any new diseases or cover them unless the rest of the world can prove

with strong evidence that they can be cured and with cheap medicines,

that aren't " experimental " in any way. The doctors here also don't

give a shit even if you're sick 50% of your working time. They're just

happy to get lots of appointments from you..

You know, I bet there are no *real* hypochondriacs in the world. Only

doctors who blame their own incapability, inability and insecurity to

correctly diagnose and identify the diseases on the patients. Most

commonly these are now metal (amalgam) poisonings and yeast diseases,

that all used be 100% hypochondriac diseases. There are ever more such

diseases (getting bitten by a zool causes one disease that causes

muscle cramps and pains and wasn't diagnosable for a loong time,

until recently.) Most of all these diseases are not " real " here, yet

there are ever more people with them now that antibiotics are common

and kiling off anti-yeast bacteria in people. More publicity and

research is what is needed. And a change of attitude in the medical

system!

Doctors should be responsible for their patients' health and

_their_work_capability_ in the sense that they'd get bonuses when the

patients agree they did get cured and are able to work better. Not

just get paid by the visit, as it encourages them to get patients to

visit them zillions of times without any use, like they apparently do

now in Finland. Also some public health servants make false

appointments and misuse the public health system here. Doctors are

getting to be greedy like lawyers, only lawyers can have their rewards

be dependent on the results they get. Doctors all over the world

should have the same kind of contracts. No cure - no bonus. Now it's

just " an appointment - a bonus " , and it doesn't much matter here if

the patients get cured or not..

++ J

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

[Guest guest]

Hi Dawn,

It seams there are a lot of new people on the list. I have been away for

several weeks and just had to delete most of the mail that was on my

computer as it was overwhelming. I am just getting caught up now.

I see you have been prescribed two drugs to combat two fungal problems. I

think if you check out the website www.otrecure.com you will find a product

called d-LENOLATE which is a natural broad spectrum anti-microbial that I

take and it helped with my candida, athlete's foot, and a host of other

problems. I trust you will find this useful.

In Health

Another newbie

> From: Nascar0531@...

>

> Hi everyone,

>

> I just joined this list last week and I have a few questions for all....

>

> 1) I have been prescribed Lamisil tablets for sin/nail fungal infections,

> has anyone found this medication to help with the rest of the candida

problem

> digestive?

>

> 2) I was also prescribed Diflucan for the internal yeast overgrowth...the

> amount is 1 pill per week for 3 weeks...has anyone found that to be an

> adequate amount to cure?

>

> 3) The only thing that has seemed to help me in the 2 years I have been

> struggling with this problem has been to fast for a day or 2 on nothing

but

> meat broth and small sips of juice (to get blood sugar from going too low,

I

> am also hypoglycemic). Has anyone else tried this approach and did it

help

> you?

>

> I became " infested " after numerous antibiotic treatments. It was almost

more

> frustrating trying to get a diagnose these past 2 years as actually

feeling

> as terrible as yeast overgrowth makes me feel. I am very happy to have

found

> this least and find all of the information I have read so far to be very

> useful :-)

> Thanks,

> Dawn

>

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

[Guest guest]

Dear Fran,

I hope my information does not get to be too repetitious or seem like I am

selling something, as I am not. I am however a person who was for many years

plagued with ill health and it wasn't until a friend introduced me to a

product which I truly believe is close to a miracle cure. I would like

everyone on this list to just visit this site www.otrecure.com and read the

literature. There are links to other sites which reinforce the statements

made, and I for one am a true believer, as it has helped me greatly. It

pains me to hear all of you who are suffering as I was, when I know there is

a product out there that will help. I hope you all will check this out and

Fran don't despair you can get relief.

In Health,

Another newbie

> >Date: Sat, 8 Jan 2000 14:29:46 EST

> >

> >Hi everyone,

> >

> >I just joined this list last week and I have a few questions for all....

> >

> >1) I have been prescribed Lamisil tablets for sin/nail fungal

infections,

> >has anyone found this medication to help with the rest of the candida

> >problem

> >digestive?

> >

> >2) I was also prescribed Diflucan for the internal yeast overgrowth...the

> >amount is 1 pill per week for 3 weeks...has anyone found that to be an

> >adequate amount to cure?

> >

> >3) The only thing that has seemed to help me in the 2 years I have been

> >struggling with this problem has been to fast for a day or 2 on nothing

but

> >meat broth and small sips of juice (to get blood sugar from going too

low,

> >I

> >am also hypoglycemic). Has anyone else tried this approach and did it

help

> >you?

> >

> >I became " infested " after numerous antibiotic treatments. It was almost

> >more

> >frustrating trying to get a diagnose these past 2 years as actually

feeling

> >as terrible as yeast overgrowth makes me feel. I am very happy to have

> >found

> >this least and find all of the information I have read so far to be very

> >useful :-)

> >Thanks,

> >Dawn

>

> ______________________________________________________

> Get Your Private, Free Email at http://www.hotmail.com

>

>

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

[Guest guest]

I am so sorry you have to suffer. I read how so many

women suffer at the hands of doctors who make us feel

as if this stuff " is all in our heads " , or as my

current dr. referred to us as " neurotic women " with

imagined fatigue. Is it an anti woman thing? Why do

put up with being treated so? Has anyone right

royally told their Dr.s off? (I did not, I need him

to read my tests and give me my meds.) I'd love to

hear about that! Reading this list (and others like

it) should be mandatory reading for medical students.

Some of us should get better and make a big stink (no

pun intended) about allopaths not believing what's

going on! Matty

> From: Jukka E Isosaari [mailto:jei@...]

> Sent: Saturday, January 08, 2000 12:23 PM

> candidiasisonelist

> Subject: Re: Another newbie

>

>

> From: Jukka E Isosaari <jei@...>

>

> On Sat, 8 Jan 2000 Nascar0531@... wrote:

>

> > From: Nascar0531@...

> >

> > Hi everyone,

> >

> > I just joined this list last week and I have a few

> questions for all.....

> ..

> > I became " infested " after numerous antibiotic

> treatments. It was almost

> more

> > frustrating trying to get a diagnose these past 2

> years as actually

> feeling

> > as terrible as yeast overgrowth makes me feel. I

> am very happy to have

> found

> > this least and find all of the information I have

> read so far to be very

> > useful :-)

>

> I think most of us have had very similar

> experiences..

>

> It's very annoying how today's " doctors " are just

> " 20-minute "

> appointments -> diagnose -> order medicine or tests

> -> order medicine

> etc, -automatons. Then they give us shit when we

> don't fit their

> learned profiles of diseases and don't get cured and

> they clearly wish

> we'd just get lost. Then they suggest we are

> hypochondriacs, etc to

> get rid of us..

>

> A computer program could do a much better job, and

> it wouldn't start

> hinting and suggesting about hypochondria when you

> don't fit the

> picture..

>

> Everyone I know who has had candida (in Finland) has

> been blamed to be

> a hypochondriac by the doctors. It isn't an

> " accepted disease " here,

> and only a few doctors even know of it's existence,

> much less are

> willing to help people get cured of it. One doctor

> just told me to get

> myself slowly used to eating yeast. - Just when I

> had noticed that it

> was the main cause of my symptoms! Like I wanted to

> be sick all of the

> time! Then I was refused further diagnosis and any

> treatment as the

> Candidiasis is not " accepted " as cureable or as a

> disease at all. ->

> So much for the governmental health system here that

> basically first

> told me I was a hypochondriac and then to stay sick,

> when I myself

> found out the cause - the doctor later agreeing with

> my diagnosis

> herself. Still leaving me with no hope of any cure

> or any treatment..

>

> If your " disease " isn't officially accepted here,

> then you'd better

> stay well in Finland. The governmental health system

> doesn't accept

> any new diseases or cover them unless the rest of

> the world can prove

> with strong evidence that they can be cured and with

> cheap medicines,

> that aren't " experimental " in any way. The doctors

> here also don't

> give a shit even if you're sick 50% of your working

> time. They're just

> happy to get lots of appointments from you..

>

> You know, I bet there are no *real* hypochondriacs

> in the world. Only

> doctors who blame their own incapability, inability

> and insecurity to

> correctly diagnose and identify the diseases on the

> patients. Most

> commonly these are now metal (amalgam) poisonings

> and yeast diseases,

> that all used be 100% hypochondriac diseases. There

> are ever more such

> diseases (getting bitten by a zool causes one

> disease that causes

> muscle cramps and pains and wasn't diagnosable for a

> loong time,

> until recently.) Most of all these diseases are not

> " real " here, yet

> there are ever more people with them now that

> antibiotics are common

> and kiling off anti-yeast bacteria in people. More

> publicity and

> research is what is needed. And a change of attitude

> in the medical

> system!

>

> Doctors should be responsible for their patients'

> health and

> _their_work_capability_ in the sense that they'd get

> bonuses when the

> patients agree they did get cured and are able to

> work better. Not

> just get paid by the visit, as it encourages them to

> get patients to

> visit them zillions of times without any use, like

> they apparently do

> now in Finland. Also some public health servants

> make false

> appointments and misuse the public health system

> here. Doctors are

> getting to be greedy like lawyers, only lawyers can

> have their rewards

> be dependent on the results they get. Doctors all

> over the world

> should have the same kind of contracts. No cure - no

> bonus. Now it's

> just " an appointment - a bonus " , and it doesn't much

> matter here if

> the patients get cured or not..

>

> ++ J

>

>

>

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

[Guest guest]

Hi, my name is Maya. I'm 26 and just joined because I am intested in

learning a little bit more about intestinal health. My dad is good friends

with Dr. Jensen, and I've had the priveledge of meeting him and talking with

him on several occasions. Regrettfully, I have not been the best at taking

care of my health until now, (you'd think i would have with all the

knowledge accessable to me) so I'm trying to make up for a few lazy years.

Hope I can learn a lot here. I'm trying to clean my body up 100%. So I am

reading and studying everything I can. Other than that, I'm interested in

childbirth and children's health.We're pretty much *do it yourself*'ers.

I'll probably have many questions for you all...

Maya

maya@...

Maya's Natural World

http://www.geocities.com/mayasnaturalworld/

[Guest guest]

Dear Leonard, When n was hospitalized in November there was a little

girl getting a stem cell transplant at the same hospital. It was

successful. It was done at the Children's hospital here in Portland.

>From: " Leonard Kroft " <lkroft@...>

>Reply- egroups

>< egroups>

>Subject: Re: Another Newbie

>Date: Mon, 10 Jul 2000 11:39:52 -0700

>

>Hi Dave,

>

>Welcome to the group. My situation is similar. My son has had

>systemic jra since he was 2. His mother, my wife, has had to 3 stays at

>the local psychiatric ward since had been sick. There was some

>talk on this group a while ago that there was a connection between bipolar

>mood disorder (what my wife has) and systemic jra. Both my wife's bipolar

>and 's stills are more severe than most. My wife's behavour can be

>odd and very disruptive. At times it is like being a single parent of

>three becouse my wife can be like a teenager with behavoural problems. (We

>also have a 2 year old daughter who goes in for heart surgery in August).

>Most of 's medications ( and we've tried lots) seem to be less and

>less effective. The doctors want to try a stem cell rescue in September.

> has been confined to a wheel chair for months.

>

>I guess this note is to let you know, for what it's worth, that you are not

>alone. If we keep at it I am sure we'll get through it all.

>

>

>Leonard Kroft

>lkroft@...

>

>

>

>

>

>

>

>

>

>

><< Img00022.jpg >>

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Hi Dave,

Welcome to the group. My situation is similar. My son has had systemic jra since he was 2. His mother, my wife, has had to 3 stays at the local psychiatric ward since had been sick. There was some talk on this group a while ago that there was a connection between bipolar mood disorder (what my wife has) and systemic jra. Both my wife's bipolar and 's stills are more severe than most. My wife's behavour can be odd and very disruptive. At times it is like being a single parent of three becouse my wife can be like a teenager with behavoural problems. (We also have a 2 year old daughter who goes in for heart surgery in August). Most of 's medications ( and we've tried lots) seem to be less and less effective. The doctors want to try a stem cell rescue in September. has been confined to a wheel chair for months.

I guess this note is to let you know, for what it's worth, that you are not alone. If we keep at it I am sure we'll get through it all.

Leonard Kroft

lkroft@...

[Guest guest]

:

Welcome to the group.

Our son Elliot (just turned 6) was diagnosed with systemic JRA right

before age 2. He has had his ups and downs. Currently he takes

naprosyn, prednisone, cyclosporine, MTX and some other stuff.

I don't think you should view Skyler as slowly crippled.

Nowadays with the aggressive treatment that most doctors use, the

kids typically do not become crippled. I'm sure you know that.

What doctor do you use?

Good luck.

Charlie

> Hello all.

>

> I am , father of Skyler - Systemic JRA - Stills sufferer since

the age of 6 months

> I have come here from another Arthritis mailing list looking for a

group with info on younger sufferers.

>

> Well, thought I would jump in and throw out Skylers story:

>

> He will be 3 years young Dec 23 this year.

> His story began very early. Though the Dr.'s don't think it was

related, I do.

> At 5 months of age he began having G.I. troubles and a very unusual

assortment of rashes (5 or 6 different types). He would vomit every

meal, regardless of how much he ate. After his mother and I had gone

to the Dr. many times over the next three months, begging for a

prognosis and treatment, they labled him " Failure to thrive " (as he

had not grown any in nearly 3 months). Around October 1998 he began

to sleep and rest in a more fetal position and resist laying flat.

He began getting more emotional and had disturbing 100 to 101 fever

frequently.

> His mother (a good friend but not wife) suffers from clinical

depression and a potentially critical brain infection, reached a

breaking point so I gathered my courage and raised quite a stir at

the Pediatricians office demanding something be done.

> This time they agreed to having him admitted at Phoenix Childrens

Hospital.

> While there, he really flared severely. Fever up to 104+, shakes

and a very unusual rash they labled " Eruthema Multiforma " (this had

Dr's from all over coming to see it). About a week later, after far

to many tests, quarantine and more specialists than I can remember,

they narrowed his affliction down to a few options and decided it was

Systemic Stills.

>

> So, they prescribed Motrin, Zantac, Ryglan and an assortment of

cortizone and antifungal creams & we went home. After 3 or 4 months

of Motrin and a slew of follow up Dr. visits, he went into

remission. Thought our prayers were answered. But he started having

frequent flu & showing allergie symptoms (one reaction resulted in

near respiratory arrest and a very terrifying rush to the ER).

>

> Then, the next August/September (1999) he started vomiting again.

Then fevers and rash. This time the fevers were themselves

terrifying and unrelenting. Many nights I sat up all night

desperately trying to keep the fever under 105, afraid to fall

asleep. Needless to say we were back in the hospital with a full

fledged flare. The Motrin no longer did the trick.

> Now he was put on Prelone.

> Well, that flare has not relented. It has, if anything increased.

We tried reducing the prelone, but the fevers increased and nearly

hit 107. Since then we have added MTX, Enbrel, Prevacid, Claritin,

Flovent and Calcium (and a dozen other meds for other things that I

have forgotten). We have been to the hospital for severe

constipation, double pneumonia and Meninghitis.

> Now he is certified as stunted growth and is starting to show

spinal trouble and chronic pain there and in all major joints,

fingers, headaches, mouth & nose. His mobility is about 50% of a

normal 2 yr old on a good day.

>

> I administered a shot of Enbrel Yesterday, hopeful for magic

reaction, but last night we peaked over 105 temp again, full rash and

all jonts in severe pain. This terrible disease sure can take away

your hope at times.

>

> All that aside, he is my third child. I have worked in nurseries

and Sunday-School, but bias aside, everyone who meets him agrees that

he is the sweetest, most loving and obedient child they have ever

met. He is a blessing and more than ever, is touching the lives of

others.

>

> Though my greatest pain in life is seeing him slowly crippled,

knowing he

> may never ride a bike, it is true what they say,

> " God works in mysterious ways " .

>

> Sorry if I have gone to dramatic, it's a bit taxing telling this.

>

> [ & Skyler]

[Guest guest]

Hi Trish,<br><br> Sound like me. I just found out

a couple weeks ago and still feel horrible. My

muscles just tighten up and are really weak and sore.

Thats what bothers me the most. I can relate to your

symptoms. Would love to chat with you further.<br>Good luck

on your Doc visit.<br>

[Guest guest]

Check out the site http://www.thyroidsupportgroup.co.uk insulin is affected

by thyroid as the thyroid stimulates the digestive system

Another newbie

Hello!

I've not yet been officially diagnosed, but my PCP has referred me to an

endocrinologist, primarily because she feels I'm insulin resistant, but I

also have symptoms of hypothyroidism as well. Being just a general

practioner, they only checked my TSH and concluded it was not my thyroid.

My TSH in April 2002 was 2.26. After doing my own research, I first

realize that I need T4 & T3 checked as well, and also that levels above

1.5 - 2 could indicate a problem with my thyroid. Has anyone else read this

as well - about the new lower 'norm' TSH levels? It looks like I won't be

able to get into the endo until the end of July, so I intend to chart my

basal temp as well. I used to chart my temps about 3 years ago, when I was

trying to conceive - my temp was always on the low side (96-97.4 range

before ovulation). In fact, taking my temp at any point during the day and

it will be 97 something or right at 98 - 98.6 for me is a fever. Not sure

if this means anything - but I will chart them anyway to take to the endo.

I'm also logging my daily food intake at fitday.com and printing those off

every day, to show that I don't consume too many calories and to show what

I'm eating. I have not been able to lose weight.

Anyway, don't want to bore you with all my ailments - but I would appreciate

a little insight on my TSH levels from the 'pros'. Thanks!

~*~ Traci ~*~

Homeschooling mom of 7

http://traciscottage.com

[Guest guest]

Hi jc, welcome...

I also remember myself as a worrier although I felt then, and still

do, that I'm not an anxious person.

I like that you put that you came through with some strategies to

avoid a panic attack. I also feel like you can avoid a panic attack

and have successfully done so for the last 4 yrs. That's not to say

I've not come close but I now know how to " talk " myself down from

one. The brain is so powerful and I figure that if I can " think "

myself into a frenzy when the feelings start, then I can think

myself down too.

I went all the way up to 20mgs cause my dr and I figured that

raising the dose would help what I was feeling at 10mgs but I've

figured out that the dose was too high and 5mgs is working

wonderfully for me.

Good Luck!

> Hi Everyone,

>

> Today is my third day on Lexapro. I have long suffered from

> generalized anxiety. In fact some of my earliest memories are of

> laying awake at night worrying about war, the atom bomb,

separation

> from my parents,....etc. In my early 20's I had a bout with real

> panic disorder and came through it with some strategies to avoid

> panic attacks. Unfortunately, the underlying problem has

continued

> to lurk throughout the years.

[Guest guest]

Hi Newbie!

Unfortunately folks like us often hate to admit we need help or meds.

I put off getting help for the longest time but when I finally did

it made a HUGE difference.

After some time (AND DOING GREAT) I was let on my own..and told to

come back in 6 months and told to continue prescrip.

Well I decided I didnt need meds anymore..went off..and you can

guess went back where I started.

DONT BE AFRAID TO TAKE MEDICINE TO HELP YOU!

You have not been able to release the problem before.

You will be amazed how much better you feel on the right medicine!

ALSO I am supersensitive to meds. and other things. Caffeine in coke

or coffee makes me almost ill.

I started on 5 mg Lex no problem

Lee

> Hi Everyone,

>

> Today is my third day on Lexapro. I have long suffered from

> generalized anxiety. In fact some of my earliest memories are of

> laying awake at night worrying about war, the atom bomb,

separation

> from my parents,....etc. In my early 20's I had a bout with real

> panic disorder and came through it with some strategies to avoid

> panic attacks. Unfortunately, the underlying problem has

continued

> to lurk throughout the years. I am now a 41 year old mother of

three

> (13, 9 and 20 months). I work as a project manager for a software

> consulting business and have been married for 20 years. My life

is

> pretty high stress on its own. Add in the anxiety disorder I have

> always had with me.... well you know the way it goes. Just over a

> year ago, I began to suffer from severe health anxiety. I won't

go

> into the morbid details since I'm trying desparately to move on.

> I've had every test in the book for the illness I fear and have

been

> pronounced healthy - with the exception of a mild case of

essential

> tremor. I can't let go of the fear. I have been taking

Klonopin .5

> am and .5 pm for the past year (as treatment for the tremor). A

side

> effect of Klonopin can be depression so....I've now added

depression

> on top of my underlying anxiety. (By the way, I'm in the process

of

> tapering SLOWWWWLLLLY off of the Klonopin.)

>

> I know this is a long story but have been lurking on this forum

and

> want to share where I'm coming from. I saw a wonderful therapist

> last week. It was my first attempt at therapy and I was

wonderfully

> surprised at how powerful the meeting was for me. I actually

cried

> in front of a total stranger. This weekend I met with a

psychiatrist

> who works with the therapist and he prescribed Lexapro. He thinks

I

> have elements of GAD, Depression and OCD (the health anxiety) but

> said I have a great chance of being cured. I went into the

meeting

> hoping to ask him to let me start on 2.5 mg of Lexapro (I've read

it

> is a powerful drug and I'm sensitive to meds). I didn't need to

> ask. He suggested I start very slowly at 2.5 mg per day for at

least

> the next 2 weeks when I'll meet with him again. He actually said

> that he thought that 5 mg would be my end dose.

>

> I started the Lexapro the same day. So .... today is day three.

So

> far I have had no side effects other than feeling a bit like I've

had

> a cup of coffee (I've been on decaf for a while). So far so

good.

> I'm not a new woman but don't expect to be at this point. I've

felt

> crappy for a long time. I'm willing to be patient and was so

pleased

> that my doctor was willing to be patient with the low dose

startup.

> This seems like a really nice supportive group. I hope I can find

a

> place here. I have a real phobia of medications so this is a

really

> big step for me.

>

> Best Wishes and Health

[Guest guest]

Thanks Shells,

The psychiatrist I saw said that he was fairly sure that 5 mg would

be the highest dose I would need due to my reports on how sensitive I

am to medications. It's nice to hear that there are others who are

at that dosage and doing well.

Best Wishes,

Patience Turtle.

> > Hi Everyone,

> >

> > Today is my third day on Lexapro. I have long suffered from

> > generalized anxiety. In fact some of my earliest memories are of

> > laying awake at night worrying about war, the atom bomb,

> separation

> > from my parents,....etc. In my early 20's I had a bout with real

> > panic disorder and came through it with some strategies to avoid

> > panic attacks. Unfortunately, the underlying problem has

> continued

> > to lurk throughout the years.

[Guest guest]

Thanks Lee,

It really is hard to admit that just getting by isn't enough. I

really hope this works out. The Lexapro is making me quite jittery

and nervous. I hope this will pass soon.

Best Wishes,

Patience Turtle

> > Hi Everyone,

> >

> > Today is my third day on Lexapro. I have long suffered from

> > generalized anxiety. In fact some of my earliest memories are of

> > laying awake at night worrying about war, the atom bomb,

> separation

> > from my parents,....etc. In my early 20's I had a bout with real

> > panic disorder and came through it with some strategies to avoid

> > panic attacks. Unfortunately, the underlying problem has

> continued

> > to lurk throughout the years. I am now a 41 year old mother of

> three

> > (13, 9 and 20 months). I work as a project manager for a

software

> > consulting business and have been married for 20 years. My life

> is

> > pretty high stress on its own. Add in the anxiety disorder I

have

> > always had with me.... well you know the way it goes. Just over

a

> > year ago, I began to suffer from severe health anxiety. I won't

> go

> > into the morbid details since I'm trying desparately to move on.

> > I've had every test in the book for the illness I fear and have

> been

> > pronounced healthy - with the exception of a mild case of

> essential

> > tremor. I can't let go of the fear. I have been taking

> Klonopin .5

> > am and .5 pm for the past year (as treatment for the tremor). A

> side

> > effect of Klonopin can be depression so....I've now added

> depression

> > on top of my underlying anxiety. (By the way, I'm in the process

> of

> > tapering SLOWWWWLLLLY off of the Klonopin.)

> >

> > I know this is a long story but have been lurking on this forum

> and

> > want to share where I'm coming from. I saw a wonderful therapist

> > last week. It was my first attempt at therapy and I was

> wonderfully

> > surprised at how powerful the meeting was for me. I actually

> cried

> > in front of a total stranger. This weekend I met with a

> psychiatrist

> > who works with the therapist and he prescribed Lexapro. He

thinks

> I

> > have elements of GAD, Depression and OCD (the health anxiety) but

> > said I have a great chance of being cured. I went into the

> meeting

> > hoping to ask him to let me start on 2.5 mg of Lexapro (I've read

> it

> > is a powerful drug and I'm sensitive to meds). I didn't need to

> > ask. He suggested I start very slowly at 2.5 mg per day for at

> least

> > the next 2 weeks when I'll meet with him again. He actually said

> > that he thought that 5 mg would be my end dose.

> >

> > I started the Lexapro the same day. So .... today is day three.

> So

> > far I have had no side effects other than feeling a bit like I've

> had

> > a cup of coffee (I've been on decaf for a while). So far so

> good.

> > I'm not a new woman but don't expect to be at this point. I've

> felt

> > crappy for a long time. I'm willing to be patient and was so

> pleased

> > that my doctor was willing to be patient with the low dose

> startup.

> > This seems like a really nice supportive group. I hope I can

find

> a

> > place here. I have a real phobia of medications so this is a

> really

> > big step for me.

> >

> > Best Wishes and Health

[Guest guest]

-Amazing how different things effect folks differently. For most

folks celexa makes them tired. Lexapro is supposed to NOT have the

side effects as they isolated the good stuff and got rid of the bad.

I am using up my celexa now (so am tired) but tried Lex and it was

fine for me..not as tired NO other side effects.

HOWEVER the first medicine you try may not be the one for you.

But you are so right...getting by is not the goal.

Enjoying your life and feeling good is the goal. And if it takes a

bit of medicine to take the edge off ..its worth it.

After you settle in with the right med. and good help you will be so

glad you did!

And you will wish you had done it sooner.

I wonder if your jitters are just from nerves over TAKING the

med..and not the med.

Try to relax and let it do the work without agonizing over taking it

or whats going to happen.

Focus on all the good that you will feel as you allow yourself to

admit that you needed help, you got it and you are going to accept

the help as the best thing for you.

Like I said its hard to admit we cant fix ourselves all by ourself

but we can take the steps so that we can help ourselves.

You did the best thing you can do.

Years of angst are going to begin to heal. Allow the process to

happen.

Lee

-- In Lexapro , " patienceturtle " <jcaussyn@i...>

wrote:

> Thanks Lee,

>

> It really is hard to admit that just getting by isn't enough. I

> really hope this works out. The Lexapro is making me quite

jittery

> and nervous. I hope this will pass soon.

>

> Best Wishes,

>

> Patience Turtle

>

>

> > > Hi Everyone,

> > >

> > > Today is my third day on Lexapro. I have long suffered from

> > > generalized anxiety. In fact some of my earliest memories are

of

> > > laying awake at night worrying about war, the atom bomb,

> > separation

> > > from my parents,....etc. In my early 20's I had a bout with

real

> > > panic disorder and came through it with some strategies to

avoid

> > > panic attacks. Unfortunately, the underlying problem has

> > continued

> > > to lurk throughout the years. I am now a 41 year old mother

of

> > three

> > > (13, 9 and 20 months). I work as a project manager for a

> software

> > > consulting business and have been married for 20 years. My

life

> > is

> > > pretty high stress on its own. Add in the anxiety disorder I

> have

> > > always had with me.... well you know the way it goes. Just

over

> a

> > > year ago, I began to suffer from severe health anxiety. I

won't

> > go

> > > into the morbid details since I'm trying desparately to move

on.

> > > I've had every test in the book for the illness I fear and

have

> > been

> > > pronounced healthy - with the exception of a mild case of

> > essential

> > > tremor. I can't let go of the fear. I have been taking

> > Klonopin .5

> > > am and .5 pm for the past year (as treatment for the tremor).

A

> > side

> > > effect of Klonopin can be depression so....I've now added

> > depression

> > > on top of my underlying anxiety. (By the way, I'm in the

process

> > of

> > > tapering SLOWWWWLLLLY off of the Klonopin.)

> > >

> > > I know this is a long story but have been lurking on this

forum

> > and

> > > want to share where I'm coming from. I saw a wonderful

therapist

> > > last week. It was my first attempt at therapy and I was

> > wonderfully

> > > surprised at how powerful the meeting was for me. I actually

> > cried

> > > in front of a total stranger. This weekend I met with a

> > psychiatrist

> > > who works with the therapist and he prescribed Lexapro. He

> thinks

> > I

> > > have elements of GAD, Depression and OCD (the health anxiety)

but

> > > said I have a great chance of being cured. I went into the

> > meeting

> > > hoping to ask him to let me start on 2.5 mg of Lexapro (I've

read

> > it

> > > is a powerful drug and I'm sensitive to meds). I didn't need

to

> > > ask. He suggested I start very slowly at 2.5 mg per day for

at

> > least

> > > the next 2 weeks when I'll meet with him again. He actually

said

> > > that he thought that 5 mg would be my end dose.

> > >

> > > I started the Lexapro the same day. So .... today is day

three.

> > So

> > > far I have had no side effects other than feeling a bit like

I've

> > had

> > > a cup of coffee (I've been on decaf for a while). So far so

> > good.

> > > I'm not a new woman but don't expect to be at this point.

I've

> > felt

> > > crappy for a long time. I'm willing to be patient and was so

> > pleased

> > > that my doctor was willing to be patient with the low dose

> > startup.

> > > This seems like a really nice supportive group. I hope I can

> find

> > a

> > > place here. I have a real phobia of medications so this is a

> > really

> > > big step for me.

> > >

> > > Best Wishes and Health

[Guest guest]

hi leah, my name is michelle and I was just diagnosed with flatback syndrome, I am having my revision surgery in sept 4th, I had my first surgery in 1989 and another one in 1990, do you have harrington rods?? I am going to try to find a specialty doctor there in Louisiana, I am 26 years old and have two little ones, my phone # 772-871-6416, call me if you need to talk!!! anytime!!! Ill find out this info and write you back!!!!!

hugs michi

Another newbie

Hello everyoneI had my scoliosis surgery in 1981 and like many of you was told when I turned 18 bye go live your life you're cured. Ha! what a load of BS that was. I have been having problems like many of you, and I am almost sure that I have Flatback. I say almost sure because I am having a hard time finding a Doctor that will even see me. I live in Louisiana. Last fall I went to the Doctor that did my original surgury at the Shriner's in Shreveport, when I told him about all the pain that I have been in for the last several years he looked at my x-rays and told me every thing looked fine, (this is his exact words) I was just too fat I need to go on a diet. Well you can just imagine how that made me feel. I mean no kidding I know I need to lose weight, I've gained from 130 to about 165 ( i'm only about 5'1 1\2) in about 3 or 4 years but I'm in so much pain I can't get out and exercise like I used to. He wrote me a perscription for pain meds and basically said I would have to live with it. I could not execpt that so i started researching on the internet and found out about flatback.I was so relieved to know that I was not the only one out there suffering from all this. Now my problem is trying to find a Doctor in my state that even knows any thing about this. I got out the phone book and started calling ortho's in my area and everyone I've tried so far says that they don't see patients that already have rods. And then they refer me to someone else and they say the same thing. I am just at my wit's end I don't know what else to do. I know about Dr. Legrone in Texas but my insurance will not pay out side of the net work unless it is an emergency and there is no way I can afford all this my self. Does anyone have any suggestions on what i should do? (Keep trying other doc's, fight my insurance which will most likely cost alot to or what) Please help.I have one other question. Does anyone have this symtom, some times when I get really tired I have these electical impluses I feel them everywhere even in my eyes its like they are vibating or something. I call it my enternal electric fence that's kind of what it feels like when you touch an electric fence that has a low voltage. It does not hurt but it gets annoying.Bye for now I look forward to getting to know you all LeahSupport for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products.

[Guest guest]

-

-hi michelle good luck on your surgery! My first surgery was in 1981

had a second surgery to cut my harrington rod off because they left

it too long but a I can't remember when it was. I'm 36 now and I have

one daughter who will be 18 this year and 3 step daughters who are

grown. Thanks for the website I'll try Dr. McCall first (I haven't

tried him yet) because he's close to where i live in the northern

part of the state, BUT I WOULD'NT CALL ON DR. EDWARD DEAN IF MY LIFE

DEPENDED ON IT HE'S THE ONE I TOLD ABOUT IN MY FIRST POST! sorry he

just raises my hackles.

leah

- In , " WILSON LUGO "

<kiannell@m...> wrote:

>

> hi leah, my name is michelle and I was just diagnosed with

flatback syndrome, I am having my revision surgery in sept 4th, I

had my first surgery in 1989 and another one in 1990, do you have

harrington rods?? I am going to try to find a specialty doctor there

in Louisiana, I am 26 years old and have two little ones, my phone #

772-871-6416, call me if you need to talk!!! anytime!!! Ill find

out this info and write you back!!!!!

>

> hugs michi

>

>

> Another newbie

>

>

> Hello everyone

>

> I had my scoliosis surgery in 1981 and like many of you was told

when

> I turned 18 bye go live your life you're cured. Ha! what a load

of BS

> that was. I have been having problems like many of you, and I am

> almost sure that I have Flatback. I say almost sure because I am

> having a hard time finding a Doctor that will even see me. I live

in

> Louisiana. Last fall I went to the Doctor that did my original

> surgury at the Shriner's in Shreveport, when I told him about all

the

> pain that I have been in for the last several years he looked at

my x-

> rays and told me every thing looked fine, (this is his exact

words) I

> was just too fat I need to go on a diet. Well you can just

imagine

> how that made me feel. I mean no kidding I know I need to lose

> weight, I've gained from 130 to about 165 ( i'm only about 5'1 1

\2)

> in about 3 or 4 years but I'm in so much pain I can't get out and

> exercise like I used to. He wrote me a perscription for pain meds

and

> basically said I would have to live with it. I could not execpt

that

> so i started researching on the internet and found out about

flatback.

> I was so relieved to know that I was not the only one out there

> suffering from all this. Now my problem is trying to find a

Doctor in

> my state that even knows any thing about this. I got out the

phone

> book and started calling ortho's in my area and everyone I've

tried

> so far says that they don't see patients that already have rods.

And

> then they refer me to someone else and they say the same thing. I

am

> just at my wit's end I don't know what else to do. I know about

Dr.

> Legrone in Texas but my insurance will not pay out side of the

net

> work unless it is an emergency and there is no way I can afford

all

> this my self. Does anyone have any suggestions on what i should

do?

> (Keep trying other doc's, fight my insurance which will most

likely

> cost alot to or what) Please help.

>

> I have one other question. Does anyone have this symtom, some

times

> when I get really tired I have these electical impluses I feel

them

> everywhere even in my eyes its like they are vibating or

something. I

> call it my enternal electric fence that's kind of what it feels

like

> when you touch an electric fence that has a low voltage. It does

not

> hurt but it gets annoying.

> Bye for now I look forward to getting to know you all

> Leah

>

>

>

[Guest guest]

Dear Leah,

Have you tried asking your insurance about the fact that no doc will see

you because you already have a rod? It seems to me that they have to let

SOME doc see you for a second opinion. In Italy we have National Health so

it's a slightly different ball game - I did have to pay for the extra

consultations and when I found the " right " doc, National Health refused to

pay for it - I appealed, however, and they did, in the end, allow me to go

to the doctor I wanted. I have to admit I put up a fight and it took me 6

months, but I did " win " - all this to encourage you to be pro-active and

don't let the insurance bureaucrats get you down. Good luck. We're here for

you. I'm sure that many from thegroup who in live in America and havedealt

with those great folks from the insurance companies can give you some good

advice. Take care.

from Italy

[Guest guest]

Hi Leah,

Welcome to the site, I'm pretty much a newbie myself. I would really like to

talk to you some more but am not feeling quite up to it today. But I did

want you to know of a couple of good sites to help you find a Dr. First I'd

try the Scoliosis Research Society www.srs.org and there is a great group of

people at the scoliosislife.net site that might have a LA member that would

know a Dr. I know I'm probably preaching to the choir, but be sure you go

only to a " REVISION SPECIALIST " . A scoliosis specialist is not trained well

enough to handle revision surgery. I'll write more later or feel free to

contact me by e-mail anytime at ddkrus@....

Good luck and welcome to a great site!

Debbie

>From: " leah " <lkedwards@...>

>Reply-

>

>Subject: Re: Another newbie

>Date: Mon, 30 Jun 2003 20:50:44 -0000

>

>-

>-hi michelle good luck on your surgery! My first surgery was in 1981

>had a second surgery to cut my harrington rod off because they left

>it too long but a I can't remember when it was. I'm 36 now and I have

>one daughter who will be 18 this year and 3 step daughters who are

>grown. Thanks for the website I'll try Dr. McCall first (I haven't

>tried him yet) because he's close to where i live in the northern

>part of the state, BUT I WOULD'NT CALL ON DR. EDWARD DEAN IF MY LIFE

>DEPENDED ON IT HE'S THE ONE I TOLD ABOUT IN MY FIRST POST! sorry he

>just raises my hackles.

>

>leah

>

>

>- In , " WILSON LUGO "

><kiannell@m...> wrote:

> >

> > hi leah, my name is michelle and I was just diagnosed with

>flatback syndrome, I am having my revision surgery in sept 4th, I

>had my first surgery in 1989 and another one in 1990, do you have

>harrington rods?? I am going to try to find a specialty doctor there

>in Louisiana, I am 26 years old and have two little ones, my phone #

>772-871-6416, call me if you need to talk!!! anytime!!! Ill find

>out this info and write you back!!!!!

> >

> > hugs michi

> >

> >

> > Another newbie

> >

> >

> > Hello everyone

> >

> > I had my scoliosis surgery in 1981 and like many of you was told

>when

> > I turned 18 bye go live your life you're cured. Ha! what a load

>of BS

> > that was. I have been having problems like many of you, and I am

> > almost sure that I have Flatback. I say almost sure because I am

> > having a hard time finding a Doctor that will even see me. I live

>in

> > Louisiana. Last fall I went to the Doctor that did my original

> > surgury at the Shriner's in Shreveport, when I told him about all

>the

> > pain that I have been in for the last several years he looked at

>my x-

> > rays and told me every thing looked fine, (this is his exact

>words) I

> > was just too fat I need to go on a diet. Well you can just

>imagine

> > how that made me feel. I mean no kidding I know I need to lose

> > weight, I've gained from 130 to about 165 ( i'm only about 5'1 1

>\2)

> > in about 3 or 4 years but I'm in so much pain I can't get out and

> > exercise like I used to. He wrote me a perscription for pain meds

>and

> > basically said I would have to live with it. I could not execpt

>that

> > so i started researching on the internet and found out about

>flatback.

> > I was so relieved to know that I was not the only one out there

> > suffering from all this. Now my problem is trying to find a

>Doctor in

> > my state that even knows any thing about this. I got out the

>phone

> > book and started calling ortho's in my area and everyone I've

>tried

> > so far says that they don't see patients that already have rods.

>And

> > then they refer me to someone else and they say the same thing. I

>am

> > just at my wit's end I don't know what else to do. I know about

>Dr.

> > Legrone in Texas but my insurance will not pay out side of the

>net

> > work unless it is an emergency and there is no way I can afford

>all

> > this my self. Does anyone have any suggestions on what i should

>do?

> > (Keep trying other doc's, fight my insurance which will most

>likely

> > cost alot to or what) Please help.

> >

> > I have one other question. Does anyone have this symtom, some

>times

> > when I get really tired I have these electical impluses I feel

>them

> > everywhere even in my eyes its like they are vibating or

>something. I

> > call it my enternal electric fence that's kind of what it feels

>like

> > when you touch an electric fence that has a low voltage. It does

>not

> > hurt but it gets annoying.

> > Bye for now I look forward to getting to know you all

> > Leah

> >

> >

> >

[Guest guest]

Hi Debbie

Thank for you that info,I did not know this, I'll see what I can find

out about this. It looks like that's the route I'll have to take.

Leah

[Guest guest]

Welcome Leah,

Since I don't live in the States, I'll let the others try to answer your doctor/insurnace questions. As to your second question about symptoms, I also have expeienced these electric impulse/twitches in my right eye, arm and leg. I had never really thought about it possibly being connected to scoliosis/HARMS. Interesting thought though. Good luck with your doctor search and I am sure I'm correct in saying that the group is here for you.

Llweyn in BC

-----Original Message-----From: leah [mailto:lkedwards@...]Sent: June 30, 2003 11:39 AM Subject: Another newbieHello everyoneI had my scoliosis surgery in 1981 and like many of you was told when I turned 18 bye go live your life you're cured. Ha! what a load of BS that was. I have been having problems like many of you, and I am almost sure that I have Flatback. I say almost sure because I am having a hard time finding a Doctor that will even see me. I live in Louisiana. Last fall I went to the Doctor that did my original surgury at the Shriner's in Shreveport, when I told him about all the pain that I have been in for the last several years he looked at my x-rays and told me every thing looked fine, (this is his exact words) I was just too fat I need to go on a diet. Well you can just imagine how that made me feel. I mean no kidding I know I need to lose weight, I've gained from 130 to about 165 ( i'm only about 5'1 1\2) in about 3 or 4 years but I'm in so much pain I can't get out and exercise like I used to. He wrote me a perscription for pain meds and basically said I would have to live with it. I could not execpt that so i started researching on the internet and found out about flatback.I was so relieved to know that I was not the only one out there suffering from all this. Now my problem is trying to find a Doctor in my state that even knows any thing about this. I got out the phone book and started calling ortho's in my area and everyone I've tried so far says that they don't see patients that already have rods. And then they refer me to someone else and they say the same thing. I am just at my wit's end I don't know what else to do. I know about Dr. Legrone in Texas but my insurance will not pay out side of the net work unless it is an emergency and there is no way I can afford all this my self. Does anyone have any suggestions on what i should do? (Keep trying other doc's, fight my insurance which will most likely cost alot to or what) Please help.I have one other question. Does anyone have this symtom, some times when I get really tired I have these electical impluses I feel them everywhere even in my eyes its like they are vibating or something. I call it my enternal electric fence that's kind of what it feels like when you touch an electric fence that has a low voltage. It does not hurt but it gets annoying.Bye for now I look forward to getting to know you all LeahSupport for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products.