Re: New To Group

[Guest guest]

There is a list of Thyroid Doc’s at

About.com. Try this link for the New York listing.

http://www.thyroid-info.com/topdrs/newyork.htm

New to

group

Just joined the other day and thought I'd jump in and

say

hello. Was diagnosed over a year ago with

Hashimoto's and

apparently nothing can be done b/c I'm not sick

enough. How

sick does one have to be? I have all the symptoms

for hypo

for over three years now. I won't list them--you

know them

all. It's very, very frustrating.

Is anyone else on this list in NYC and if so, who

is your

endo? I've been shopping around and have not found

anyone to

my liking. I swear I'm not a difficult person, I

just don't

think a doctor should ask me if I'm cheating on my

diet and

that's why I'm gaining weight. Or another doctor

told me that

I shouldn't compare myself to Hollywood--weight

gain is

normal for all people. So frustrating.

Thanks,

Hillary in NYC

[Guest guest]

hillary,

welcome. i have found it very helpful to talk in this group setting.

i just joined about a week ago. my story is in the messages area. i

am also not sick enough to have anything done, but i keep having flare

ups. i'm searching for the dr that doesnt say 'oh, you are too young

to have these problems. or you dont look bad.' it's very hard. my

advice, just keep searching. keep reading books and educating

yourself so you can educate the drs.

i have found that the drs know about hypo, but you have to ask

specifically if they know about hashi. there arent that many. go to

that website and look to see what drs are around for you.

http://www.thyroid-info.com/topdrs/index.htm

well, look forward to hearing more from you.

julie

-- In Thyroiditis , hillary71@r... wrote:

> Just joined the other day and thought I'd jump in and say

> hello. Was diagnosed over a year ago with Hashimoto's and

> apparently nothing can be done b/c I'm not sick enough. How

> sick does one have to be? I have all the symptoms for hypo

> for over three years now. I won't list them--you know them

> all. It's very, very frustrating.

>

> Is anyone else on this list in NYC and if so, who is your

> endo? I've been shopping around and have not found anyone to

> my liking. I swear I'm not a difficult person, I just don't

> think a doctor should ask me if I'm cheating on my diet and

> that's why I'm gaining weight. Or another doctor told me that

> I shouldn't compare myself to Hollywood--weight gain is

> normal for all people. So frustrating.

>

> Thanks,

> Hillary in NYC

[Guest guest]

Hi Connie,

I'm new here too - it's a great group; very active and friendly.

I've tested positive for Lyme - well at least borrelia. You know there

are two different sorts they have identified now? There's the actual

Lyme disease that you get by being bitten by a tick and then there's

" borrelia " which is sort of the same but they now think you can get that

from practically anywhere. I'm not sure which I have but I'm guessing

that with the actual Lyme disease you probably have it in an acute form

and are ill with it when it starts - can someone help out here if I am

wrong - please.

I also have the " worms " , or at least I did have them but I have just

taken a month of Ivermectin to try to get rid of them. Doc said I may

need more at some stage.

Also, as I understand it, these are not a reason for having CFS, they

are the result of having an impaired immune system which is part of CFS

- if you see what I mean?

Can't help you on the energy at the moment, sorry, I haven't got any! I

have recently had a relapse so am just starting treatment for the second

time......

Rosemary-in-Greece :-)

Connie wrote:

> Hi Everyone,

>

> I am new to this group and just curious how many of you have tested

> for Lyme disease? This seems to be a common reason for chronic

> fatigue. I had CFS for a long time before learning I had Lyme.

>

> Also, what have you found to be the most effective treatment for energy?

>

> Thanks,

>

> Connie

>

>

[Guest guest]

Welcome, Connie!

Nope, haven't been tested for Lymes, but ticks love me.

The best treatment for energy is resting whenever needed for as long

as needed.

You might want to go back and read some of the posts about diets,

weight loss, and lifestyle changes. There is a wealth of information

from this group that can alter attitudes and life.

As a relatively newbie, I must say this is the best group I've found

as far as responses that are not only worthwhile, but a forum where

people are willing to share varying viewpoints without fear of

criticism.

DeAnn

>

> Hi Everyone,

>

> I am new to this group and just curious how many of you have tested

> for Lyme disease? This seems to be a common reason for chronic

> fatigue. I had CFS for a long time before learning I had Lyme.

>

> Also, what have you found to be the most effective treatment for

energy?

>

> Thanks,

>

> Connie

>

[Guest guest]

Hi Rosemary,

I'm sorry for the super delayed response! I have been so busy these

past few weeks...

Borrelia is the name of one of the infections transmitted in Lyme;

Lyme refers to the complex of infections and the disease. Although if

there have been further distinctions, then I am unaware of them.

What do you feel are the causes of your impaired immune function in

CFS? I have often wondered myself whether my Lyme caused impaired

immune function and hence CFS, or whether the CFS preceded the Lyme!

Such a puzzle!

Thanks, and best wishes for your healing.

Connie

[Guest guest]

Hi DeAnn,

Sorry also for the delayed response! I have been really busy lately.

Thanks for the welcome.

I appreciate the suggestions to read up on diet, etc. I am pretty

well-read on these issues (I actually just published a book on Lyme

disease and how to deal with some of the CFS-related problems) but I

am here to see what more I can learn, as there is always more!

Thanks,

Connie

[Guest guest]

In a message dated 8/11/2008 5:25:48 P.M. Eastern Daylight Time,

judibird60@... writes:

Hi - I'm new to the group and have been reading some of the postings

and find that one of the over-riding themes is non-acceptance by

others. I find this too, and feel embarrassed when I can't do

something - I'm overweight and I can tell that people are thinking

that it's my weight keeping me from doing things, not some vague thing

called fibromyalgia - I've actually been accused of making it up! I

am also diabetic and sometimes just so tired and beaten down that I

want to crawl into a hole! I'm on a fair number of meds that have

weight gain as a side effect - my dr tells me to lose weight and to

exercise, but just the thought of it makes me cry! I am an active

person (caring for an aged mother and my husband). Thanks for

listening - it helps to know that others understand. Judi

Hi Judi,

I just wanted to let you know that after three and a half years of fighting

for a diagnosis, I was just recently diagnosed. I am also new to the group

as well. But I cannot tell you what a weight has been lifted from my

shoulders since being diagnosed. I have seen so many different doctors and

specialists for years and none of them would give me a diagnosis. (I also have

a

degree in the medical field so that just irked me more when dealing with them.)

I completely sympathize with you. I used to be overweight and I know what

people are thinking. I am diabetic, I have CFS, I am on an incredible amount of

medications still after losing the weight, I have even gained 15 lbs of it

back and that irritates me. I was seeing a rheumatologist who then sent me to

a pain clinic and a physiologist, who told me I had an inflammatory

disease...but neither of them would admit I had Fibromyalgia. I recently saw

my

primary care physician and my neurologist and they both admitted to me that I

had fibromyalgia. Hello? Now I am on medication for that and finally

receiving a little bit of relief. Judi, if you want to email me privately,

just let

me know.

Lots of love.

Eireann

Ar meisce cha dtéim níos mó,

Braon leanna go dea ní bhlaisfidh mé

" And wine can, of their wits beguile

make the sage frolic and the serious smile! " --Homer

" From the mead horn--the pure and shining liquor, which the bees provide but

do not enjoy, Mead distilled I praise. " --Book of Taliesin, Mabinogion

[Guest guest]

Judi,

Your post spoke to me. I feel that some people think if I got back in

the shape I was before fibromyalgia and if I lose my extra 50 pounds,

I would not experience pain. Most of these people are no longer my

friends, they are just people I happen to know. Chronic illness will

let you know who your true friends are.

I have been ill since about 1993/1994 and I am lucky that I have about

5 true friends and my daughter and husband and to a lesser degree, my

grown sons, that try to understand and care about me.

I am pretty active with my main problem being pain. I did scale down

from full-time to part-time work in March of 2003, although I am

working full-time this month.

I am happy to get to know you.

Penny

>

> Hi - I'm new to the group and have been reading some of the postings

> and find that one of the over-riding themes is non-acceptance by

> others. I find this too, and feel embarrassed when I can't do

> something - I'm overweight and I can tell that people are thinking

> that it's my weight keeping me from doing things, not some vague thing

> called fibromyalgia - I've actually been accused of making it up! I

> am also diabetic and sometimes just so tired and beaten down that I

> want to crawl into a hole! I'm on a fair number of meds that have

> weight gain as a side effect - my dr tells me to lose weight and to

> exercise, but just the thought of it makes me cry! I am an active

> person (caring for an aged mother and my husband). Thanks for

> listening - it helps to know that others understand. Judi

>