Question

[Guest guest]

I've been on Lex for a year and I haven't really gained any weight. Even if

I did, I'd rather have the extra weight than the depression.

Sue c

-- question

Hello everyone,

I just started on lexapro a few days ago and am real concerned about

weight gain. I have heard about a lot of people gaining weight on it.

I was wondering if there are people out there who haven't gained any

weight on it??

Thanks,

Kim

[Guest guest]

I take all my meds. in the morning after I have my breakfast.Usually by 5am.

Sandy

[Guest guest]

Just my experience with the celiac adventure (2 weeks in) that any "slip" will cause problems for 1-5 days. Hope this helps. Marcy

[Guest guest]

Now THAT'S an early breakfast! :*)

-db-

Sandy H wrote:

>

> I take all my meds. in the morning after I have my breakfast.Usually

> by 5am.

> Sandy

>

>

[Guest guest]

Well she doesn't have celiac disease, at least the blood test markers have come back negative. Yikes, 1-5 days, that seems like a long time. Well, I guess we'll just wait it out and see how she does. Thanks for the advice, Marcy.

Caroline_._,___

[Guest guest]

Caroline,

Personally I wouldn't get too upset at this point. I would guess that something did bother her or else she just picked up a virus that maybe you all are immune to. There have been a lot of GI bugs going round. had a couple this spring and one was just loose stools and nothing else. Lasted a few days and ended on it's own.

Sounds like you are doing the right things. Beside the rice being organic, is it also brown rice? If it is, that has a lot of fiber in it and maybe best to try just white for day or two till things calm down.

--Carol in IL

-------------- Original message -------------- From: "Caroline Skalsky" <cskalsky@...>

My daughter, Isabella now 4yrs, is used to eating healthy with very little organic only sugar., but mostly honey to sweeten things. We eat no refined flour or sugar and have been very careful about her diet in general since birth. The last 2 days she has had loose bowels, one after the next, but only 2 not multiples all day long. She is potty trained (or at least I think she still is ). The first bowel movement is fine, but the second just goes all over, like she has no idea it is coming. On Sunday, she ate pretty normally, at a relatives, but careful not to get any sugar from the DQ ice cream cake they served. On Monday night, she had spaghetti at a friends house (we rarely eat this and sometimes red sauce does not agree with her). She had a small portion, but could that make her system go crazy? No one in our family has been sick and she does not seem sick at all. I have no clue how to help her get passed this except bananas and org

anic rice.....do any of you have some help out there for me?

Sorry for the detailed post, thanks for any help!!

Caroline

[Guest guest]

>

> Hello everyone,

> I just started on lexapro a few days ago and am real concerned about

> weight gain. I have heard about a lot of people gaining weight on it.

> I was wondering if there are people out there who haven't gained any

> weight on it??

>

> Thanks,

> Kim

>

=======================================================

I haven't, but a racewalk 3-4 days a week and work out at they gym

twice a week.

-- njg

[Guest guest]

--

I take it when I get to work, my doctor suggested a.m.

I don't really get tired anymore, been taking it since early May.

Best,

njg

===========================================

>

> I would like to know what time everyone on here takes there

Lexapro. I have

> been on Lexapro 10mg. for 1 year for anxiety. I take it about 11

p.m., but

> I yawn all day long, not much energy and have a hard time waking up

in the

> morning. I would love to hear what everyone things about taking

it morning

> verses nighttime! Thanks,

>

>

>

[Guest guest]

I have been on Lex for about two months. I have had no weight

gain. I work out once a day.

Good luck.

> >

> > Hello everyone,

> > I just started on lexapro a few days ago and am real concerned

about

> > weight gain. I have heard about a lot of people gaining weight

on it.

> > I was wondering if there are people out there who haven't gained

any

> > weight on it??

> >

> > Thanks,

> > Kim

> >

>

>

> =======================================================

>

> I haven't, but a racewalk 3-4 days a week and work out at they gym

> twice a week.

>

>

> -- njg

>

[Guest guest]

Thanks to everyone who responded about when they take their Lexapro. I

guess I am going to try to take it about 5 PM. I teach piano from (summer hours

different) 1-8:15 or so. I started taking the Lexapro in the am and it made me

so tired all day. I still am tired all day so I am not sure what to do, but

I guess I'll try something different. You would think after one year, I

would be used to it. I still yawn, and have a very hard time waking up in the

morning.

[Guest guest]

Before I lost my job I was still on Lex and because I

was able to find a diabetic diatician who showed me a

better way of eating I was still able to loose weight.

I also was doing regular walking which is also a part

of things. Keep a good healthy regimn and I would

think you'd be ok.

ak

--- <kimahart26@...> wrote:

> Hello everyone,

> I just started on lexapro a few days ago and am real

> concerned about

> weight gain. I have heard about a lot of people

> gaining weight on it.

> I was wondering if there are people out there who

> haven't gained any

> weight on it??

>

> Thanks,

> Kim

>

>

>

>

[Guest guest]

I take it at verious times at night and I find myself

tired too the next day no matter how long I sleep.

However, I also have to deal with sleep apnea which

only makes things worse.

ak

--- susanb4piano@... wrote:

> I would like to know what time everyone on here

> takes there Lexapro. I have

> been on Lexapro 10mg. for 1 year for anxiety. I

> take it about 11 p.m., but

> I yawn all day long, not much energy and have a hard

> time waking up in the

> morning. I would love to hear what everyone things

> about taking it morning

> verses nighttime! Thanks,

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

Have you had your Dr. check your blood levels to make

sure there isn't something that you may need to add to

your diet or something? Maybe you could use more iron

in your diet or a lot of times exercise helps a lot or

even intaking more water to thin your blood out. Have

you ever thought of taking a supplement like the

Mangosteen fruit? The original and best kind is put

out by the company Xango. It has helped alot of people

with their energy. You can look it up either by h

Mangosteen.com or Xango or my web site

impact2health.com/glory to look up the benefits of

this juice. I don't know where you are located but I'm

sure we can hook you up with the product if you think

you are interested.

ak

--- susanb4piano@... wrote:

> Thanks to everyone who responded about when they

> take their Lexapro. I

> guess I am going to try to take it about 5 PM. I

> teach piano from (summer hours

> different) 1-8:15 or so. I started taking the

> Lexapro in the am and it made me

> so tired all day. I still am tired all day so I am

> not sure what to do, but

> I guess I'll try something different. You would

> think after one year, I

> would be used to it. I still yawn, and have a very

> hard time waking up in the

> morning.

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

There are probably several different causes, but one that has been

researched are the IgA allergies (specifically celiac). Dr. Fasano's

take is that the IgA allergies cause the secretion of zonulin, which

opens up the gut barrier, releasing proteins into the blood

with trigger autoimmunities. If zonulin is injected into rats, they

develop T1. And if gluten intolerant kids that have anti-thyroid or

anti-pancreatic

antibodies are taken off gluten, they stop producing the antibodies.

But ... not all kids with the antibodies react to wheat, so the others

might be reacting to something else. Still, it torques me that they

don't even *test* for gluten/casien intolerance when they find out

someone has the antibodies, because THAT is something

that you can do something about. In the list groups I'm on,

there have been kids whose parents reversed their T1 diabetes,

since it was caught early and there wasn't so much damage.

Anyway, here is a link:

http://thyroid.about.com/cs/latestresearch/a/celiac.htm

Of perhaps greatest importance to thyroid patients, the researchers

found that the various antibodies that indicate celiac disease -

organ-specific autoantibodies (i.e., thyroid antibodies) -- will

disappear after 3 to 6 months of a gluten-free diet.

The researchers suggest that patients with autoimmune thyroiditis " may

benefit from a screening for celiac disease so as to eliminate symptoms

and limit the risk of developing other autoimmune disorders. "

Linn wrote:

> I posted this on the thyroid group but wanted to post it here also

> and hopefully get some opinions:

>

> Here's my question, what's the cause of the antibodies to begin with,

> that's what I am having a hard time finding and wish I could get more

> info. All the info I come across states that it's not known which

> comes first the antibodies or the thyroid damage. Is that not known

> or is there little research into that area? In that respect, it's

> similar to how Type 1 diabetes develops, the pancreas is attacked.

> In doing research it appears that people who have autoimmune thyroid

> disease are at risk for other autoimmune disease also as are Type 1

> diabetics. It follows to me that once those symptoms appear and are

> dealt with by insulin or thryoid meds then whatever is causing the

> particular type of antibodies is still there and just shows up

> someplace creating a different antibody against something else.

>

> Linn

>

>

[Guest guest]

>From: Linn <linnmiller@...>

>I posted this on the thyroid group but wanted to post it here also

>and hopefully get some opinions:

>

>Here's my question, what's the cause of the antibodies to begin with,

>that's what I am having a hard time finding and wish I could get more

>info. All the info I come across states that it's not known which

>comes first the antibodies or the thyroid damage. Is that not known

>or is there little research into that area? In that respect, it's

>similar to how Type 1 diabetes develops, the pancreas is attacked.

>In doing research it appears that people who have autoimmune thyroid

>disease are at risk for other autoimmune disease also as are Type 1

>diabetics. It follows to me that once those symptoms appear and are

>dealt with by insulin or thryoid meds then whatever is causing the

>particular type of antibodies is still there and just shows up

>someplace creating a different antibody against something else.

There may be different causes. Some think initially thyroid antibodies can

be caused by inadequate iodine. (I think Dr. Derry has expressed that

theory.) That doesn't mean iodine supplementation alone can fix the

problem.

On the Mayo Clinic website a long time ago, they were saying that maybe

autoimmune disease isn't from overactive immune system, but a tired and

confused one. Thyroid hormone being necessary for all cells in the body,

low thyroid would create a state of tiredness and confusion even in the

immune system. So, it is possible it starts with the low thyroid (or low

iodine.)

It can be transitory. A highly technical, but good site, thyroidmanager.org

says that in 25% of cases Hashimoto's goes away on its own.

I read online a summary by a medical college of an endocrinology magazine

article. Someone went to the ER in adrenal crises. They historically had

high Hashimoto's antibodies. After treatment with corticosteroids (I don't

recall the duration, strength, or type but it was short term treatment) they

commented that the person no longer needed adrenal support, and that his

Hashi's antibodies had disappeared completely. Which implies that thyroid

antibodies and adrenal weakness are sometimes linked.

In many thyroid patients, the antibodies go down with thryoid treatment.

For whatever reason, doctors have decided that once someone is being treated

their antibodies are irrelevant.

I think they're wrong, because lowering implies you're actually correcting

the cause.

I suspect the majority of health problems are caused by imbalances in the

endocrine system. (Yet the majority of doctors are afraid of giving

hormones in adequate doses, of the bio-identical kind.)

Skipper

_________________________________________________________________

Don’t just search. Find. Check out the new MSN Search!

http://search.msn.click-url.com/go/onm00200636ave/direct/01/

[Guest guest]

Heidi, I'm not sure how they test other places, but my daughter was tested when she was diagnosed with diabetes, for both gluten and thyroid.  Are you saying that these kid's parents totally reversed their Type 1 diabetes?  I'd be really interested in contacting them.  Can you put me in touch?  LinnOn Jul 18, 2006, at 10:40 PM, Heidi wrote:There are probably several different causes, but one that has beenresearched are the IgA allergies (specifically celiac). Dr. Fasano'stake is that the IgA allergies cause the secretion of zonulin, whichopens up the gut barrier, releasing proteins into the bloodwith trigger autoimmunities. If zonulin is injected into rats, theydevelop T1. And if gluten intolerant kids that have anti-thyroid or anti-pancreaticantibodies are taken off gluten, they stop producing the antibodies.But ... not all kids with the antibodies react to wheat, so the othersmight be reacting to something else. Still, it torques me that theydon't even *test* for gluten/casien intolerance when they find outsomeone has the antibodies, because THAT is somethingthat you can do something about. In the list groups I'm on,there have been kids whose parents reversed their T1 diabetes,since it was caught early and there wasn't so much damage.Anyway, here is a link:http://thyroid.about.com/cs/latestresearch/a/celiac.htmOf perhaps greatest importance to thyroid patients, the researchers found that the various antibodies that indicate celiac disease - organ-specific autoantibodies (i.e., thyroid antibodies) -- will disappear after 3 to 6 months of a gluten-free diet.The researchers suggest that patients with autoimmune thyroiditis "may benefit from a screening for celiac disease so as to eliminate symptoms and limit the risk of developing other autoimmune disorders.". 

[Guest guest]

I used to be pretty well informed regarding auto-immune issues, my older daughter had  severe aplastic anemia, and we had to become educated PDQ to keep up with her care.  Am back now researching again.  It's very frustrating though as there are many hypothesis but there always seems to be one agent that's idiopathic.  I'll tell you from everything I've read, that toxemia and vaccine issues (reactions or mutations from one generation to the next) seems to make the most sense.  Type 1 diabetes is referenced to the ackle (spelling??) virus, but not everyone who gets that develops diabetes.  Same thing with aplastic anemia, people have usually had some type of virus within 6 weeks of developing it, usually strep throat.  Researchers are good at explaining all the functions that follow once a particular type of autoimmune disease develops and various explanations of the right way to treat it, but what's missing is what causes the body to not be able to distinguish self.  Typically they're looking for a way to treat not to cure.LinnOn Jul 19, 2006, at 9:26 AM, Zoe & wrote:I've been collecting links on auto-immune issues and the thyroid since it is such a crucial issue with iodine supplementation.  I've been putting them in the Thyroid section.  You'll find them here:iodine/links/How_Iodine_Affects_t_001138666832/Thyroid_001138148449/Auto_Immune_Issues_001143568069/Auto_Immune_Research_001144938947/ There are also several articles on our website www.iodine4health.comIf you go to the thyroid disease section and click on "Auto-immune Issues", you'll find them.MailScanner warning: numerical links are often malicious: http://72.148.194.153/iodine/disease/thyroid/thyroid_disease_frame.htm  One of the articles I found most helpful is an early review article by Wick.  This article is particularly good because it provides some general background on immunology for those without sophistication in this area.  Immunoendocrine communication via the hypothalamo-pituitary-adrenal axis in autoimmune diseases.Wick G, Hu Y, Schwarz S, Kroemer G.Endocr Rev. 1993 Oct;14(5):539-63. Review. "Autoimmune diseases have a multifactorial pathogenesis. We have put forward the hypothesis that two sets of essential genes must be present in an individual in order for a given autoimmune disease to develop: genes coding for abnormally increased autoreactivity of the immune system and genes coding for a primary susceptibility of the target organ (in organ-specific autoimmune diseases) or target structure in general (in systemic autoimmune diseases) for the attack of the humoral and/or cellular effector mechanisms. The final outcome of a given disease then depends on additional  modulatory factors. Among the latter, steroid hormones, particularly GC, are the most prominent." My impression is there is a LOT of research on what causes autoimmunity -- and autoimmunity of the thyroid is closely related to other forms of autoimmunity.  I don't know if there is consensus yet on exactly what is going on.  I would love for someone to really look into auto-immunity and become our resident expert. Zoe  What's the cause of the antibodies to begin with,  that's what I am having a hard time finding and wish I could get more  info.  All the info I come across states that it's not known which  comes first the antibodies or the thyroid damage.  Is that not known  or is there little research into that area?  In that respect, it's  similar to how Type 1 diabetes develops, the pancreas is attacked.   In doing research it appears that people who have autoimmune thyroid  disease are at risk for other autoimmune disease also as are Type 1  diabetics.  It follows to me that once those symptoms appear and are  dealt with by insulin or thryoid meds then whatever is causing the  particular type of antibodies is still there and just shows up  someplace creating a different antibody against something else.LinnOn Jul 18, 2006, at 10:40 PM, Heidi wrote:There are probably several different causes, but one that has beenresearched are the IgA allergies (specifically celiac). Dr. Fasano'stake is that the IgA allergies cause the secretion of zonulin, whichopens up the gut barrier, releasing proteins into the bloodwith trigger autoimmunities. If zonulin is injected into rats, theydevelop T1. And if gluten intolerant kids that have anti-thyroid or anti-pancreaticantibodies are taken off gluten, they stop producing the antibodies.But ... not all kids with the antibodies react to wheat, so the othersmight be reacting to something else. Still, it torques me that theydon't even *test* for gluten/casien intolerance when they find outsomeone has the antibodies, because THAT is somethingthat you can do something about. In the list groups I'm on,there have been kids whose parents reversed their T1 diabetes,since it was caught early and there wasn't so much damage.Anyway, here is a link:http://thyroid.about.com/cs/latestresearch/a/celiac.htmOf perhaps greatest importance to thyroid patients, the researchers found that the various antibodies that indicate celiac disease - organ-specific autoantibodies (i.e., thyroid antibodies) -- will disappear after 3 to 6 months of a gluten-free diet.The researchers suggest that patients with autoimmune thyroiditis "may benefit from a screening for celiac disease so as to eliminate symptoms and limit the risk of developing other autoimmune disorders."

[Guest guest]

>I used to be pretty well informed regarding auto-immune issues, my older daughter had severe aplastic anemia, and we had to become educated PDQ to keep up with her care. Am back now researching again. It's very frustrating though as there are many hypothesis but there always seems to be one agent that's idiopathic. I'll tell you from everything I've read, that toxemia and vaccine issues (reactions or mutations from one generation to the next) seems to make the most sense. ... Researchers are good at explaining all the functions that follow once a particular type of autoimmune disease develops and various explanations of the right way to treat it, but what's missing is what causes the body to not be able to distinguish self. Typically they're looking for a way to treat not to cure.

Linn

Dr. Hal Huggins postulates that the ubiquitous presence of mercury in the cells of our bodies, either from vapor released from amalgams, or preservatives in vaccinations in shots, or fish, or a myriad of other sources, is at least one cause of auto-immune antibody attack. In the thyroid, the mercury substitutes for one of the iodine molecules of thyroxine. That mercury-complexed thyroxine is no longer seen as self, so the body tries to destroy it. I suppose a similar thing might happen in other parts of the body that use iodine. So if damage is not too far gone, maybe removal of amalgams and proper chelation would provide a cure, not just a treatment. According to Dr. Huggins.

Lynn

[Guest guest]

Linn wrote:

> Heidi,

> I'm not sure how they test other places, but my daughter was tested

> when she was diagnosed with diabetes, for both gluten and thyroid.

> Are you saying that these kid's parents totally reversed their Type 1

> diabetes? I'd be really interested in contacting them. Can you put

> me in touch?

>

> Linn

I'd have to look them up in some archives ... it was about a year ago, I

think,

when it came up on another group. It's also come up in studies, but

I don't think you can contact the parents in that case. In the studies,

yeah,

about 10% of the T1 patients got rid of the antibodies totally. Which is

amazing. It doesn't say what is happening to the other 90%, but from

Dr. Fasano's research I'd say it's a zonulin thing in a large percentage

of cases (what triggers zonulin is another good research issue: but they

are going to be coming out with a zonulin blocker which might work

in the meantime).

I'm glad to hear they tested for gluten antibodies though. The

thing you want to look at in the numbers is: did she HAVE

gluten antibodies? The docs only report them as positive if they

are over a certain number in the blood, but they can be lower

than that and still cause problems. The antibodies normally

stay in the gut, not in the blood, and there is only one test

that tests for them in the gut (Dr. Fine's). Also it may well be

that casein is the culprit (due to Enfamil etc) more than gluten.

Casein causes T1 more in rats than does gluten, which is

interesting.

-- Heidi

>

[Guest guest]

Heidi, Can you tell me which studies you're referring to?  The only thing I can find is referenced to lab studies regarding mice which are induced to develop diabetes that this relates to.  No reference to reversal just info regarding certain percentages that did not go on to develop diabetes.  I didn't see any reference to any studies regarding children and reversal of Type 1 diabetes.  I monitor JDRF research and they don't have any info on that either, they have the same info regarding celiac disease being more common in Type 1 diabetics.  I'd have a hard time believing that a 10% reversal in human subjects would be able to kept quiet.  I do volunteer work for the JDRF and have several sources for info that are very informed on new and ongoing research.  Sometimes people read these studies and don't realize that they are regarding experiments on animals, and that the conditions are induced.  Lots of research turns up all kinds of info but it doesn't necessarily correlate to the real thing in humans.  Anyway, if you could provide me with a link to the studies, I'd really appreciate it reading them.   I almost always get copies of lab work and hospital records.  I like to read things for myself and look over lab reports, etc.   I like to know everything they know.   LinnOn Jul 21, 2006, at 12:27 AM, Heidi wrote:Linn wrote:> Heidi,> I'm not sure how they test other places, but my daughter was tested > when she was diagnosed with diabetes, for both gluten and thyroid. > Are you saying that these kid's parents totally reversed their Type 1 > diabetes? I'd be really interested in contacting them. Can you put > me in touch? >> LinnI'd have to look them up in some archives ... it was about a year ago, I think,when it came up on another group. It's also come up in studies, butI don't think you can contact the parents in that case. In the studies, yeah,about 10% of the T1 patients got rid of the antibodies totally. Which isamazing. It doesn't say what is happening to the other 90%, but fromDr. Fasano's research I'd say it's a zonulin thing in a large percentageof cases (what triggers zonulin is another good research issue: but theyare going to be coming out with a zonulin blocker which might workin the meantime).I'm glad to hear they tested for gluten antibodies though. Thething you want to look at in the numbers is: did she HAVEgluten antibodies? The docs only report them as positive if theyare over a certain number in the blood, but they can be lowerthan that and still cause problems. The antibodies normallystay in the gut, not in the blood, and there is only one testthat tests for them in the gut (Dr. Fine's). Also it may well bethat casein is the culprit (due to Enfamil etc) more than gluten.Casein causes T1 more in rats than does gluten, which isinteresting.-- Heidi>

[Guest guest]

Hi , I just found out I have both the hep b virus and the hep c virus. I haven't been to the specialist yet, but my family DR. says the b virus is curable but the c virus is not. I have alot of questions about this myself, but but not any answers. e-mail be back if you want to talk and tell me your story. I'll be happy to bore you with mine! Hpoe to hear from you, Pam Glisa <leza254@...> wrote: if diagnosis is hep b & c for over a year i just started this month on hepsera

for hep b. if you have the antibody for hep c. what does that mean?? my husband seems to be telling everyone that i got rid of it and i no longer have it. and all i get is looks and calls asking. because everyone knows it is not something that just goes away... so could you answer a question do you get rid of hep b or hep c. i was told no.. just medications slow it down. need some answers i am not getting from doctors around here where i live. just need some advise or something. i have read alot about this and i thought i knew this is not something that just goes away. thanks for listening ... lisa

[Guest guest]

i am at my daughters house useing her computer mine went crazy and locked up. will be back up in a few days so sure we can chat about it. i have been to doctors and to liver specialist at uab. in birmingham. we can talk as soon as i get back my computer okay.... nice to hear from someone. lisa pamela rose <pamelagrace1956@...> wrote: Hi , I just found out I have both the hep b virus and the hep c virus. I haven't been to the specialist yet, but my family DR. says the b virus is curable but the

c virus is not. I have alot of questions about this myself, but but not any answers. e-mail be back if you want to talk and tell me your story. I'll be happy to bore you with mine! Hpoe to hear from you, Pam Glisa <leza254 > wrote: if diagnosis is hep b & c for over a year i just started this month on hepsera for hep b. if you have the antibody for hep c. what does that mean?? my husband seems to be telling everyone that i got rid of it and i no longer have it. and all i get is looks and calls asking. because everyone knows it is not something that just goes away... so could you answer a question do you get rid of hep b or hep c. i was told no.. just medications slow it down. need some answers i am not getting from doctors around here where i live.

just need some advise or something. i have read alot about this and i thought i knew this is not something that just goes away. thanks for listening ... lisa

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

>

> Hey everyone,

>

> Got a question. We all know that this is not a rare disease but

from

> what I can tell, know one had ever heard of it until they were

> diagnosed. Has anyone ever asked their dr. if this disease IS NOT

> rare, why hasn't anyone ever heard of it until they were diagnosed?

> When anyone finds out what Larry has, they go a cholestea-what? I've

> never heard of that.

>

> Anyone got an answer? I'm just curious. I will be asking Larry's

> doctor when I see him for surgery exactly one month from today!

>

> Michele

>

Hey Michele - I'm new here just yesterday. I am self-diagnosed so

far, I guess. My problem began 33 years ago during a plane trip, I

had excruciating pain during descent in my neck (probably my

eustachian tubes collapsing) after having a SMR done the prior year

due to ear infections causing me to lose my balance and fall to the

floor. I have had problems all of my adult life with my ears. I am

now 53 and wonder why I have invested so much in varied insurance

programs and had hundreds of visits with doctors, PCP as well as ENT's

over the years since 1974. You would not even believe some of the

diagnoses I have been given. I have even been told by doctors that I

was imagining the drainage and pain in my ears and stress was causing

the pressure in my head and popping in my ears. Well the C-toma now

has grown out from behind my eardrum to my outer ear from me pulling

on my ears so much trying to get them to clear out all the debris that

keeps " growing " inside my ear canals to this very day. I am so angry

at the doctors for not properly diagnosing this that I don't even know

where to turn next. The doctors where I live here in Salem, Oregon at

the ENT clinic hate me and I am scared to pursue this with them. I am

irritable and anzious all the time from the annoying pain in my ears

constantly and have severe arthritic pain in the base of my skull,

shoulders, and down my back. My life is a mess from what apparently

should of been a small matter to fix up. Now, I have no job, no

insurance and no hope. The situation has gotten so bad that I feel

that I may be one of the rare cases that is likely fatal. I don't

know where to go from here with such inadquate uncaring health

professionals that just don't care unless you have the money to

satisfy their business interests. Got any ideas? I did my best to

hang in with this, but the future looks pretty dim. This problem is

causing me to lose my eyesight as well, i guess. The hairy, scaly

shards of dead skin that I pull out of my ears is attached all the way

to my face. Not pretty, either. I have been trying to get someone to

give me a job so I can get insurance, but in this condition and the

state of the world currently, well, it doesn't look to hopeful at this

point. I wish you luck and am very glad that someone has been

thoughtful enough to bring out the truth on the subject. Good luck

getting diagnosed as this disease obviously is not a favorite among

the professional medical practices. They don't want it to be a

cholesteatoma so they call it something else to keep you coming back

agagain and again and again, until you go away or get rich or lucky

enough to get over it. BTW, this condition was discovered in the

1800's, so your question is more than a valid one. Its not like this

is AIDS or something, you know? It has to do with the mark.....or

otherwise known as money matters. Most people probably aren't rich

enough to afford to have a cholesteatoma, let alone more than one.

Thanks for letting me ventilate on your question. I wondered the same

thing just yesterday. I didn't hear about C-tomas until I googled

around regarding ear implant removals, because I thought I had a

stimoceiver!!!! Funny. huh?

[Guest guest]

Michele, I don't think it we pay too much attention to all of the mutitudes of disease that are in this world unless they are in the news or someone we know develops it. I don't look at the cholesteatoma as a disease but as a growth that has to be removed.

You are correct that the majority of people you run into will look at you like you are suddenly speaking a foreign language.

Hang in the, Annette

Re: Question

>> Hey everyone,> > Got a question. We all know that this is not a rare disease but from > what I can tell, know one had ever heard of it until they were > diagnosed. Has anyone ever asked their dr. if this disease IS NOT > rare, why hasn't anyone ever heard of it until they were diagnosed? > When anyone finds out what Larry has, they go a cholestea-what? I've > never heard of that.> > Anyone got an answer? I'm just curious. I will be asking Larry's > doctor when I see him for surgery exactly one month from today!> > Michele>Hey Michele - I'm new here just yesterday. I am self-diagnosed so far, I guess. My problem began 33 years ago during a plane trip, I had excruciating

pain during descent in my neck (probably my eustachian tubes collapsing) after having a SMR done the prior year due to ear infections causing me to lose my balance and fall to the floor. I have had problems all of my adult life with my ears. I am now 53 and wonder why I have invested so much in varied insurance programs and had hundreds of visits with doctors, PCP as well as ENT's over the years since 1974. You would not even believe some of the diagnoses I have been given. I have even been told by doctors that I was imagining the drainage and pain in my ears and stress was causing the pressure in my head and popping in my ears. Well the C-toma now has grown out from behind my eardrum to my outer ear from me pulling on my ears so much trying to get them to clear out all the debris that keeps "growing" inside my ear canals to this very day. I am so angry at the doctors for not properly diagnosing this that I don't even

know where to turn next. The doctors where I live here in Salem, Oregon at the ENT clinic hate me and I am scared to pursue this with them. I am irritable and anzious all the time from the annoying pain in my ears constantly and have severe arthritic pain in the base of my skull, shoulders, and down my back. My life is a mess from what apparently should of been a small matter to fix up. Now, I have no job, no insurance and no hope. The situation has gotten so bad that I feel that I may be one of the rare cases that is likely fatal. I don't know where to go from here with such inadquate uncaring health professionals that just don't care unless you have the money to satisfy their business interests. Got any ideas? I did my best to hang in with this, but the future looks pretty dim. This problem is causing me to lose my eyesight as well, i guess. The hairy, scaly shards of dead skin that I pull out of my ears is attached

all the way to my face. Not pretty, either. I have been trying to get someone to give me a job so I can get insurance, but in this condition and the state of the world currently, well, it doesn't look to hopeful at this point. I wish you luck and am very glad that someone has been thoughtful enough to bring out the truth on the subject. Good luck getting diagnosed as this disease obviously is not a favorite among the professional medical practices. They don't want it to be a cholesteatoma so they call it something else to keep you coming back agagain and again and again, until you go away or get rich or lucky enough to get over it. BTW, this condition was discovered in the 1800's, so your question is more than a valid one. Its not like this is AIDS or something, you know? It has to do with the mark.....or otherwise known as money matters. Most people probably aren't rich enough to afford to have a cholesteatoma, let

alone more than one. Thanks for letting me ventilate on your question. I wondered the same thing just yesterday. I didn't hear about C-tomas until I googled around regarding ear implant removals, because I thought I had a stimoceiver! !!! Funny. huh?

[Guest guest]

Hi !

I'm kind of behind in reading my E-mails so somebody may have answered this

already.

But yes-there is the South End Soup Nite-it meets the first Monday of each

month and it's in Tacoma! It is on the PNW calendar and reminders are

usually sent out a few days ahead of time. (We also get notified if the

meeting is canceled because there is a holiday on that Monday!)

Olympia

>>Is there a support group meeting near Tacoma?

>> R.