New

June 30, 2004

barb

Go directly to a lyme dr. You don't have to tell anyone you are going. There

is an eye test to see if you have the toxins in your body.

sarah

Barbara " <barbsvalhalla@...> wrote:

> Hello everyone, My name is Barbwire and this is my first post although i

> have been a reader for awhile. I hope my post is not thought of as crazy

but

> here goes. My boyfriend was diagnosed with lyme last year after 13 years of

> misdiagnossis and the going has been very tough. As I did more reasearch

> into the disease I realized that this may have been the cause of my

repeated

> problems over the years, ie horrible female problems including extreme

> clotting and pain so bad i'm afraid to move, uncontroable anger issues,

> crying for days at a time with no real reason, numbness and tingling in my

> extremities and pubic area, no alcohol tolerance, eye twitching, migrains,

> memory issues, panic attacks, bladder problems, herniated discs, as I'm

sure

> you all know the list goes on and on. Born and raised in northern Virgina,

> the first exposure i can recall is when my uncle (the great white hunter)

> brought the 12 point buck to our house where it laid in our living room for

> several hours(i don't remember how old i was probably 6-8yrs) had school

> problems, teenage years were a nightmare, acting out etc. but i don't

really

> know if i was infected then. In 1986 while pregnant with my second child i

> developed a raised circular rash on my right leg. Knowing it was not normal

> i went to the base hospital at ft. carson (colorado) and was asked if i had

> been around any strange dogs lately which i had at a yard sale just (not

> sure how long) prior to the rash appearing. I was told i had ringworm and

> sent on my way. Went through 2 divorces due to my uncontrollable anger

> issues(ussually involving my menses) and met my current boyfriend who has

> lyme. When i went to him and tried to talk to him about the possibillity of

> me having lyme as well i was completly rejected and he told me that it was

> all in my head, that i had done so much research i was hysterical. He even

> went so far as to say i was skitzo(?) and dont i dare say anything to his

> doctors about it. I feel very alone as i have very little family support

and

> no health insurance to boot (he has insurance and we might try to get me on

> at some point) since i have had three children since the rash i have fears

> for their health which my boyfriend also thinks is me being hysterical. I

> don't know where to turn as my boyfriend completly refuses to speak with me

> about it at all. I'm afraid to get tested because if it's neg i will face

> the same battle of misdiagnossis and the ridicule of my boyfriend with the

i

> told you so. I am so hurt that after all of the patience i have tried to

> have with him i am getting the same treatment all the doctors gave him. I'm

> sorry to just unload but if i don't talk to someone at this point I feel i

> will explode. thank you for listening.

>

> _________________________________________________________________

> Get fast, reliable Internet access with MSN 9 Dial-up – now 3 months FREE!

> http://join.msn.click-url.com/go/onm00200361ave/direct/01/

>

> Questions and/or comments can be directed to the list owner at

> -Owner

>

June 30, 2004

Barbara,

Regarding your own health, who cares about " ridicule " or what anyone

else thinks. You have to do what is right for you, period!

Just as a shortcut and having to keep from reading a hundred posts

or more to get any idea as to what is going on regarding lyme

diagnosis, most of us who are experiencing lyme will tell you that

clinical sypmtoms are more telling than the lyme tests are. I have

had negative , Western Blot, and PCR (and about $2,000 in the

hole as a result). But I am relatively certain I have lyme because I

have all the classical symptoms, respond negatively to tests to a

vast majority of similar illness, and respond positivley to lyme

therapy (abx and herbal anti-microbials). I will be having a Bowen

test next week to make a more certain " diagnosis " . But nothing is

definitive with chronic lyme. I just say I have a 'lyme-related

illness.'

That's not to say it can't be something else. A simple and

inexpensive way to start would be to try starting with some of the

herbals, (e.g. Samento, Carnivora, etc). They are safe and will be

telling if you begin experiencing herxing. Then you'll know you are

least on the right track without spending thousands of dollars on

tests first. Then move foreward from there. And yes, do see a lyme

knowledgeable Dr. ASAP.

Listening to other peoples opinions instead of your own body will

make you " scitzo " .

Craig

> Hello everyone, My name is Barbwire and this is my first post

although i

> have been a reader for awhile. I hope my post is not thought of as

crazy but

> here goes. My boyfriend was diagnosed with lyme last year after 13

years of

> misdiagnossis and the going has been very tough. As I did more

reasearch

> into the disease I realized that this may have been the cause of

my repeated

> problems over the years, ie horrible female problems including

extreme

> clotting and pain so bad i'm afraid to move, uncontroable anger

issues,

> crying for days at a time with no real reason, numbness and

tingling in my

> extremities and pubic area, no alcohol tolerance, eye twitching,

migrains,

> memory issues, panic attacks, bladder problems, herniated discs,

as I'm sure

> you all know the list goes on and on. Born and raised in northern

Virgina,

> the first exposure i can recall is when my uncle (the great white

hunter)

> brought the 12 point buck to our house where it laid in our living

room for

> several hours(i don't remember how old i was probably 6-8yrs) had

school

> problems, teenage years were a nightmare, acting out etc. but i

don't really

> know if i was infected then. In 1986 while pregnant with my second

child i

> developed a raised circular rash on my right leg. Knowing it was

not normal

> i went to the base hospital at ft. carson (colorado) and was asked

if i had

> been around any strange dogs lately which i had at a yard sale

just (not

> sure how long) prior to the rash appearing. I was told i had

ringworm and

> sent on my way. Went through 2 divorces due to my uncontrollable

anger

> issues(ussually involving my menses) and met my current boyfriend

who has

> lyme. When i went to him and tried to talk to him about the

possibillity of

> me having lyme as well i was completly rejected and he told me

that it was

> all in my head, that i had done so much research i was hysterical.

He even

> went so far as to say i was skitzo(?) and dont i dare say anything

to his

> doctors about it. I feel very alone as i have very little family

support and

> no health insurance to boot (he has insurance and we might try to

get me on

> at some point) since i have had three children since the rash i

have fears

> for their health which my boyfriend also thinks is me being

hysterical. I

> don't know where to turn as my boyfriend completly refuses to

speak with me

> about it at all. I'm afraid to get tested because if it's neg i

will face

> the same battle of misdiagnossis and the ridicule of my boyfriend

with the i

> told you so. I am so hurt that after all of the patience i have

tried to

> have with him i am getting the same treatment all the doctors gave

him. I'm

> sorry to just unload but if i don't talk to someone at this point

I feel i

> will explode. thank you for listening.

>

> _________________________________________________________________

> Get fast, reliable Internet access with MSN 9 Dial-up – now 3

months FREE!

> http://join.msn.click-url.com/go/onm00200361ave/direct/01/

July 1, 2004

Don't Feel bad, I haven't been able to balance a check book in 3 yrs! Lately

I cant recall the names of everyday products in my house. I am scared to get

a job for fear someone else may realize how intelligent I am really not. I

get overwhelmed by anything, cleaning my room. Organization? what's that?

yeah you want to take about cognitive dysfunction? oh boy...

Jen w/ Turkey Toby and Baloo the bear

_________________________________________________________________

Express yourself instantly with MSN Messenger! Download today - it's FREE!

http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

July 17, 2004

That's what my dr. was.

SharonRhonda <rhondahudson@...> wrote:

He's a gastroenterologist.Rhonda Re: [ ] New> >> >> > > Hi Rhonda..I am Jan from Louisiana..Yes this group is pretty quiet on> the> >

weekends..WELCOME!! I remember being scared..It is totally natural..When> you> > want or vent or just say hi or to share a laugh we arehere.I wentthrough> TX> > too but not as long..TX is different for all of us..I am tooundetectable> as> > of my last bloodwork..I need to go back though to get checked..Heythe> biopsy> > isn't fun is it?? Mine wasn't..So where are you from??> > >> > >> > > Sharon Zeis <szeis_1@...> wrote: Well you came to the rightplace> > Rhonda. I'm Sharon, I did the peg-intron treatment. Finished it 10/02and> at> > my last bloodwork I was still undetectable.The shock is common but itwill> > wear off and life will go on. Keep in mind most people die with hepc,not> > from it. I live in Texas and did a bunch of yard work this morning soI'm> > off to take a nap. Tell

us more about yourself and ask any questions you> may> > think of. This group is kinda quiet on weekends but we really are glad> your> > here now.> > > Sharon> > >> > > Rhonda <rhondahudson@...> wrote:> > > My mail went through. Finally.> > >> > > I joined yesterday.> > > I'm glad to find a group of people to talk to about this disease.> > > I was diagnosed last month and just had a biopsy Tuesday, ugh, I didnot> > > like it! No sedative just Lanacaine that stung like crazy. Glad that's> > over.> > > I won't get the results from that until the 27th.> > > What started this strange road was going to the Dr. and since I hadn't> > been> > > in years they did a full blood

work up. The Hepatitis [ is it enzyme> > > count? ] was a 46 instead of being between 10-40.> > > Look at me I don't even know the lingo-lol.> > >> > > Anyway right now I'm sort of in a state of shock. I have always been a> > > healthy person, no illnesses besides the occasional cold. This is all> very> > > new and scary!> > >> > > Thanks for listening,> > > Rhonda> > >> > > BEGIN:VCARD> > > VERSION:2.1> > > N:Hudson;Rhonda> > > FN:Rhonda Hudson> > > EMAIL;PREF;INTERNET:rhondahudson@...> > > REV:20040717T183821Z> > > END:VCARD> > >> > >> > > ---------------------------------> > > Do you ?> > > - You care about security. So do we.> > >

SponsorADVERTISEMENT> > >> > >> > > ---------------------------------> > >

July 18, 2004

I've been taking things step-by-step, learning as much as I can, trying to not

get 'too' overloaded.

I too, have been'recently' diagnosed, and have had a liver-biopsy,.....

Yes, the 'waiting' for results and everything is ab-SO-lutely NO fun ! !

Don't forget to check-out the group links page !

LOTS of good info to be found there too!

/links

Catcha Later. :-)

> > > > My mail went through. Finally.

> > > >

> > > > I joined yesterday.

> > > > I'm glad to find a group of people to talk to about this disease.

> > > > I was diagnosed last month and just had a biopsy Tuesday, ugh, I did

> not

> > > > like it! No sedative just Lanacaine that stung like crazy. Glad that's

> > > over.

> > > > I won't get the results from that until the 27th.

> > > > What started this strange road was going to the Dr. and since I hadn't

> > > been

> > > > in years they did a full blood work up. The Hepatitis [ is it enzyme

> > > > count? ] was a 46 instead of being between 10-40.

> > > > Look at me I don't even know the lingo-lol.

> > > >

> > > > Anyway right now I'm sort of in a state of shock. I have always been a

> > > > healthy person, no illnesses besides the occasional cold. This is all

> > very

> > > > new and scary!

> > > >

> > > > Thanks for listening,

> > > > Rhonda

> > > >

> > > > BEGIN:VCARD

> > > > VERSION:2.1

> > > > N:Hudson;Rhonda

> > > > FN:Rhonda Hudson

> > > > EMAIL;PREF;INTERNET:rhondahudson@w...

> > > > REV:20040717T183821Z

> > > > END:VCARD

> > > >

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

> > > > Do you ?

> > > > - You care about security. So do we.

> > > >

July 18, 2004

Hi Dug,

I am trying to take things one step at a time too. It's getting easier.

Thanks for the tip about the links

Rhonda

[ ] Re: New

> I've been taking things step-by-step, learning as much as I can, trying to

not get 'too' overloaded.

>

> I too, have been'recently' diagnosed, and have had a liver-biopsy,.....

>

> Yes, the 'waiting' for results and everything is ab-SO-lutely NO fun ! !

>

> Don't forget to check-out the group links page !

>

> LOTS of good info to be found there too!

>

> /links

>

> Catcha Later. :-)

>

> > > > > My mail went through. Finally.

> > > > >

> > > > > I joined yesterday.

> > > > > I'm glad to find a group of people to talk to about this disease.

> > > > > I was diagnosed last month and just had a biopsy Tuesday, ugh, I

did

> > not

> > > > > like it! No sedative just Lanacaine that stung like crazy. Glad

that's

> > > > over.

> > > > > I won't get the results from that until the 27th.

> > > > > What started this strange road was going to the Dr. and since I

hadn't

> > > > been

> > > > > in years they did a full blood work up. The Hepatitis [ is it

enzyme

> > > > > count? ] was a 46 instead of being between 10-40.

> > > > > Look at me I don't even know the lingo-lol.

> > > > >

> > > > > Anyway right now I'm sort of in a state of shock. I have always

been a

> > > > > healthy person, no illnesses besides the occasional cold. This is

all

> > > very

> > > > > new and scary!

> > > > >

> > > > > Thanks for listening,

> > > > > Rhonda

> > > > >

> > > > > BEGIN:VCARD

> > > > > VERSION:2.1

> > > > > N:Hudson;Rhonda

> > > > > FN:Rhonda Hudson

> > > > > EMAIL;PREF;INTERNET:rhondahudson@w...

> > > > > REV:20040717T183821Z

> > > > > END:VCARD

> > > > >

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

> > > > > Do you ?

> > > > > - You care about security. So do we.

> > > > >

August 26, 2004

being scared im going to die

Why do you feel like you're going to die? Terry

August 26, 2004

I kind of know what you mean. After my panic attack the first time,

because I thought I was having a heart attack, I was afraid I'd die,

actually, I was convinced I was going to die. I was sure it was my

heart, even though I'd been checked out. Our minds can do funny

things to us. The lexapro has helped me a lot.

Kathy

> being scared im going to die

>

> Why do you feel like you're going to die? Terry

>

September 10, 2004

This is spam and not appropriate. This person has now been moderated.

dan

Friday, September 10, 2004, 4:28:08 PM, you wrote:

w> Check this Website Out www.lapbandinternational.com

Dan Lester, Boise, ID honu@... www.mylapband.tk

Dr. Ortiz, Tijuana, 4/28/03

323/209/199 Age 61

November 8, 2004

Hi ,

You just described me to the letter, but I was also going through menopause, so

I blamed this for years. I am on Synthroid, but am still having a lot of

problems. I go tomorrow for a Adrenal test. Thanks to list member Gracia for

bringing this to my attention!! They told me to fast for this test.

How old are you? I am 49 and started Menopause at 39, naturally, no surgery!

I can't seem to pay my bills on time. I am so fatigued all the time. I have

aches in my joints so bad that I have to take a hot shower in the mornings to

walk at times. I come out of the Mall and can't find where I parked. I am so

unorganized. This just was never me, until the last few years. I feel for you.

Have a test done. Keep us posted!! It's 7 PM and past my bedtime! But, I

will not sleep much! I am so tired, but can't sleep well.

I can't believe that they didn't test you for this! Then again!

Take care,

Kathy

new

Hi, I'm new here. I have not been diagnosed yet with hypothyroidism,

but I have a doctor's appointment in 3 weeks. I've had numerous tests

done over the past year to try to figure out what is wrong with me.

I've been to neurologist and seen a psychologist. Had MRI's, CAT

scans, blood work, EEG's and have found nothing wrong. My symptoms:

tired ALL the time

sever PMS

horrible mood swings (crabby most of the time)

low metabolism and pulse

mental fogginess, VERY forgetful, poor concentration, easily confused

cold feet and foot pain (my feet have been killing me!)

gain 10 lbs. in the past year

very depressed, sad, crying spells

sometimes feel dizzy

loss of interest-no energy

and the list goes on...

can anyone tell me if this is what i have? my worst symptoms are the

mental fogginess, i just feel real spaced out all of the time and have

a very hard time concentrating and paying attention to anything. I've

had to quit my job due to his....anyone else have these problems?

Please help!!

Thanks,

November 8, 2004

Good luck with this test for adrenals! So far on these lists I have never

encountered anyone who failed the adrenal blood test, but many needed low

dose cortisol. (me included) This is the frustrating part, tests that

don't work and docs that don't know.

Gracia

Hi ,

>

> You just described me to the letter, but I was also going through

menopause, so I blamed this for years. I am on Synthroid, but am still

having a lot of problems. I go tomorrow for a Adrenal test. Thanks to list

member Gracia for bringing this to my attention!! They told me to fast for

this test.

>

> How old are you? I am 49 and started Menopause at 39, naturally, no

surgery!

>

> I can't seem to pay my bills on time. I am so fatigued all the time. I

have aches in my joints so bad that I have to take a hot shower in the

mornings to walk at times. I come out of the Mall and can't find where I

parked. I am so unorganized. This just was never me, until the last few

years. I feel for you. Have a test done. Keep us posted!! It's 7 PM and

past my bedtime! But, I will not sleep much! I am so tired, but can't

sleep well.

>

> I can't believe that they didn't test you for this! Then again!

>

> Take care,

> Kathy

>

November 8, 2004

you sound very hypo--educate yourself! I was never given thyroid meds

after a partial thyroidectomy, my life became a living hell, I had to self

medicate or I would have died.

READ everything you can.

http://www.geocities.com/thyroide

Gracia

>

> Hi, I'm new here. I have not been diagnosed yet with hypothyroidism,

> but I have a doctor's appointment in 3 weeks. I've had numerous tests

> done over the past year to try to figure out what is wrong with me.

> I've been to neurologist and seen a psychologist. Had MRI's, CAT

> scans, blood work, EEG's and have found nothing wrong. My symptoms:

> tired ALL the time

> sever PMS

> horrible mood swings (crabby most of the time)

> low metabolism and pulse

> mental fogginess, VERY forgetful, poor concentration, easily confused

> cold feet and foot pain (my feet have been killing me!)

> gain 10 lbs. in the past year

> very depressed, sad, crying spells

> sometimes feel dizzy

> loss of interest-no energy

>

> and the list goes on...

> can anyone tell me if this is what i have? my worst symptoms are the

> mental fogginess, i just feel real spaced out all of the time and have

> a very hard time concentrating and paying attention to anything. I've

> had to quit my job due to his....anyone else have these problems?

> Please help!!

> Thanks,

>

November 9, 2004

Definately would persist in getting this evaluated - both thyroid

tests, and antibody for hashimoto test. Initially, you sounds like

all the symptoms I experienced before diagnosis.

Sherry

>

> Hi, I'm new here. I have not been diagnosed yet with

hypothyroidism,

> but I have a doctor's appointment in 3 weeks. I've had numerous

tests

> done over the past year to try to figure out what is wrong with me.

> I've been to neurologist and seen a psychologist. Had MRI's, CAT

> scans, blood work, EEG's and have found nothing wrong. My symptoms:

> tired ALL the time

> sever PMS

> horrible mood swings (crabby most of the time)

> low metabolism and pulse

> mental fogginess, VERY forgetful, poor concentration, easily

confused

> cold feet and foot pain (my feet have been killing me!)

> gain 10 lbs. in the past year

> very depressed, sad, crying spells

> sometimes feel dizzy

> loss of interest-no energy

>

> and the list goes on...

> can anyone tell me if this is what i have? my worst symptoms are

the

> mental fogginess, i just feel real spaced out all of the time and

have

> a very hard time concentrating and paying attention to anything.

I've

> had to quit my job due to his....anyone else have these problems?

> Please help!!

> Thanks,

>

November 9, 2004

Hi ,

I'm new to this too, with a lot of your same symptoms.

Hang in there. Read up on Hypothyroidism. Get the proper tests done

and be ready to endure doctors that will not necessarily want to

address your symptoms. My doctor told me to tape my mouth shut if I

wanted to lose weight and to take an anti-anxiety drug. I'm still in

the process of proper diagnosis and treatment.

Remind yourself that you know your body best and that you know how

you feel.

Hope you have an easier time getting properly diagnosed and treated.

All the best,

Adriene

November 9, 2004

Hi Gracia - I've just been diagnosed with Hashimotos - not yet on medication but

probably within the next month will have to bite the bullet. Have been taking

Kelp with every meal to no avail. Recently cut down on my soy intake although my

Dr. doesn't believe this will be helpful. I eat no pork or red meat (for many

years ), & eat only " happy " chickens (free range). What on earth causes my

immune system to begin attacking my thyroid???? I'm sure we're all wondering

this !!! Do you know the name of the blood test to measure adrenal function???

Thanks for any info. Take Care, Lorna

Gracia <circe@...> wrote:

Good luck with this test for adrenals! So far on these lists I have never

encountered anyone who failed the adrenal blood test, but many needed low

dose cortisol. (me included) This is the frustrating part, tests that

don't work and docs that don't know.

Gracia

Hi ,

>

> You just described me to the letter, but I was also going through

menopause, so I blamed this for years. I am on Synthroid, but am still

having a lot of problems. I go tomorrow for a Adrenal test. Thanks to list

member Gracia for bringing this to my attention!! They told me to fast for

this test.

>

> How old are you? I am 49 and started Menopause at 39, naturally, no

surgery!

>

> I can't seem to pay my bills on time. I am so fatigued all the time. I

have aches in my joints so bad that I have to take a hot shower in the

mornings to walk at times. I come out of the Mall and can't find where I

parked. I am so unorganized. This just was never me, until the last few

years. I feel for you. Have a test done. Keep us posted!! It's 7 PM and

past my bedtime! But, I will not sleep much! I am so tired, but can't

sleep well.

>

> I can't believe that they didn't test you for this! Then again!

>

> Take care,

> Kathy

>

November 9, 2004

Hi Adriene,

I can't believe that your doctor said that to you. What nerve!! I sure hope

that you got another Dr.

Welcome all the newcomers! Have not had time to post much lately. I was

suppose to have a test done today, but they forgot that it had to be kept cold

for the Adrenal test. Now, I have to go to the hospital and have it done.

Can't do it tomorrow, work day! :-(

Kathy

Re: new

Hi ,

I'm new to this too, with a lot of your same symptoms.

Hang in there. Read up on Hypothyroidism. Get the proper tests done

and be ready to endure doctors that will not necessarily want to

address your symptoms. My doctor told me to tape my mouth shut if I

wanted to lose weight and to take an anti-anxiety drug. I'm still in

the process of proper diagnosis and treatment.

Remind yourself that you know your body best and that you know how

you feel.

Hope you have an easier time getting properly diagnosed and treated.

All the best,

Adriene

November 9, 2004

That is not very encouraging, Gracia! What is one to do??? :-((

Kathy

Re: new

Good luck with this test for adrenals! So far on these lists I have never

encountered anyone who failed the adrenal blood test, but many needed low

dose cortisol. (me included) This is the frustrating part, tests that

don't work and docs that don't know.

Gracia

Hi ,

>

> You just described me to the letter, but I was also going through

menopause, so I blamed this for years. I am on Synthroid, but am still

having a lot of problems. I go tomorrow for a Adrenal test. Thanks to list

member Gracia for bringing this to my attention!! They told me to fast for

this test.

>

> How old are you? I am 49 and started Menopause at 39, naturally, no

surgery!

>

> I can't seem to pay my bills on time. I am so fatigued all the time. I

have aches in my joints so bad that I have to take a hot shower in the

mornings to walk at times. I come out of the Mall and can't find where I

parked. I am so unorganized. This just was never me, until the last few

years. I feel for you. Have a test done. Keep us posted!! It's 7 PM and

past my bedtime! But, I will not sleep much! I am so tired, but can't

sleep well.

>

> I can't believe that they didn't test you for this! Then again!

>

> Take care,

> Kathy

>

November 12, 2004

Hi Carla and welcome to the group. Just let us know what questions

you have as you read old posts and learn more about RA. You will

find lots of support here, but also a ton of information about

dealing with RA and treatment of RA.

November 12, 2004

Hi Cherie and welcome to the group. I am 34 and have a 4 year old

daughter. My mom has severe RA, she got it when I was in junior

high. My sypmtoms started about two years ago and I've been

diagnosed for over a year now. Here is a link to help with

understanding what it means to have a chronic illness:

http://www.butyoudontlooksick.com/spoons.htm

Have you considered doing something else with nursing that will be

less stressful and less physically challenging? I have made lots of

changes in my life since getting RA (mainly getting divorced and

changing jobs). I have found all the changes to be for the positive,

resulting in me being much happier and having a lot less stress, both

good for RA and for my life in general.

I know the Plaquinil takes a while to fully take affect. Keep in

mind that if it doesn't get you to the point you can function fairly

well, there other other medication options. I am on methotrexate and

Humira, and I am on prednisone but almost weaned off. The key is to

let your rheumy know if the medication is not doing enough. You

probably can't expect to be 100% of how you used to feel, but you can

expect to get to the point of having no regular flares. My problems

these days are limited to fatigue and flares when the weather changes

or there is high humidity.

Jennie

November 12, 2004

Ca D-Glucarate is a supplement that can be used to remove excess estrogens from

the body. Eliminate sugar from the diet because it creates estrogen in the body.

Eat plenty of fresh organic vegetables especially cruciferous ones. Juice the

vegetables if you can.

----- Original Message -----

From: christina -Nov 11 -I'm new, I have metastatic breast cancer, and am in my

6th months of chemo, when I am finished my onc wants to put me on Tamoxifen and

I don't want it, does anyone know of or have any suggestions regarding natural

treatments? I have had it with traditional medicine!

November 14, 2004

Hi carla, i am very new to this group, also... welcome... my name is Rae and i

live in napa, california... sounds sort of like me, trying to get diagnosed... i

think you will like it here, these girls have a lot of info, which we all need

so we can make educated decisions aobut our bodies.... i am on the same meds as

you but i had a very high liver enzyme count so i had to stop the methotrexate

and now i just took it again on friday and i have to have another test, if the

enzymes are high, then i can not take it anymore....

does anybody know what happens if you can not take methotrexate anymore???

rae

[ ] New

Hi. My name is Carla and I was recently diagnosed with RA after 2 years of

dealing with ongoing symptoms following Lyme disease. It was suspected that I

also got fibro... but the RA is a definite diagnosis.

In the past year I've had extensive damage to my wrists and hands and to my

left ankle, which has been very swollen for almost two years.. the damage is

beginning to affect my toe joints also.

I am just starting treatments... I'm taking low doses of methotrexate once a

week, which will be increasing.. also folic acid once a day.

My family tends to have osteoarthritis; not rheumatoid..which is, I am

learning, a whole different ballgame.

I was going to go into treatment with a controversial but respected Infectious

disease specialist for my Lyme.. however, due to the increasing pain and

disability I acceded to my primary care physician's request that I be seen and

tested by a good rheumatologist. After seeing both doctors, and getting some

extremely good responsiveness and answers that made sense from the

rheumatologist, I decided that the first order of priority was to stop or slow

the rheumatoid arthritis before I was permanently disabled.... I have been

working full time through all this and helping my widowed mother who is 87. I

also plan to retire in a year and want to be able to write, play guitar, garden,

groom my dogs, knit... in other words walking and using my hands is so important

to me......

I'm not 100% sure that the lyme bacteria aren't still in my body and going to

do more damage.. but I can't not try to stop the RA. Being new new new.... I

have a big learning curve... I'll start reading past posts during this

weekend... Thank you. Nice to meet you all. Carla in Rhode Island

November 14, 2004

Hi Lorna, there is a test called ACTH for adrenals. There are good

thyroid/adrenal sites mentioned in previous posts here, if you can do a

search. I have done EVERY test for adrenals. Saliva, blood, ACTH all came

out normal or even high. Only 24 hr urine test from AAL lab was low, I

added cortef 5mg 4X a day, and it made a miracle of difference.

Gracia

>

> Hi Gracia - I've just been diagnosed with Hashimotos - not yet on

medication but probably within the next month will have to bite the bullet.

Have been taking Kelp with every meal to no avail. Recently cut down on my

soy intake although my Dr. doesn't believe this will be helpful. I eat no

pork or red meat (for many years ), & eat only " happy " chickens (free

range). What on earth causes my immune system to begin attacking my

thyroid???? I'm sure we're all wondering this !!! Do you know the name of

the blood test to measure adrenal function??? Thanks for any info. Take

Care, Lorna

>

> Gracia <circe@...> wrote:

> Good luck with this test for adrenals! So far on these lists I have

never

> encountered anyone who failed the adrenal blood test, but many needed low

> dose cortisol. (me included) This is the frustrating part, tests that

> don't work and docs that don't know.

> Gracia

>

November 14, 2004

That means that you will have failed at mtx, and your doctor should

move on to something else to try. Many insurance companies require that

you fail at at least two meds before they will pay for one of the

biologicals (Enbrel, Humira, and Remicade). My insurance was like that.

I failed at mtx and Arava because of low white blood cell counts. Even

then, the insurance company took a whole month before they approved me

for Enbrel. The Enbrel is working so much better for me than the mtx

did. Here's hoping that your next med will help you without adverse

side effects.

Sue

On Sunday, November 14, 2004, at 12:33 PM, Rae Sandberg wrote:

>

> i am on the same meds as you but i had a very high liver enzyme count

> so i had to stop the methotrexate and now i just took it again on

> friday and i have to have another test, if the enzymes are high, then

> i can not take it anymore....

> does anybody know what happens if you can not take methotrexate

> anymore???

November 14, 2004

THANKS, SUE... oooppppss... did not know i was yelling, hahahahaha..

do you have any bad side effects from enbrel? i took thre methotrexate friday,

we will see on thursday what is going to happen, i hate waiting, i wanted to

have this all under control before the holidays, does not look like we will make

it..

rae

Re: [ ] New