New to the Group

[Guest guest]

Hi ,

What is Methotrexate and plaquenil? Fortunately, when we have to

give Shane prednisone it's only one 2 tsp. dose. It usually kicks

out or reboots his system. We only do this when his temperature is

105°F, vomiting and feels super bad.

Has your daughter been ill with JRA most of her life? When did you

know something was wrong?

Thanks for your reply!

Take care,

Beverly

> >

> > Hi everyone,

> >

> > I recently joined this group a few months ago. I suspected he

might

> > have JRA. My son, Shane was diagnosed today with JRA.

Probably

> > systemic JRA. He gets very high fevers (105°F) every 6 to 8

weeks.

>

> > The fever would last for a week if we didn't give him a dose of

> > prednisone. We give him the prednisone when he is at his

sickest

> > time (high fever, vomiting, joint pain)it kicks the illness out

of

> > his body within hours. It's like he was never sick!!!

> >

> > He was originally diagnosed with (periodic fever

syndrome).

> > But last April, he started getting rashes. He also gets eye

pain

> > periodically, along with pain in his legs and feet off and on

> > throughout the months and in-between the fevers.

> >

> > When he was younger, he would be " healthy " in between his fever

> > episodes. But now, in between his fevers, his legs/feet hurt,

he

> > has abdominal pain (complains almost everyday), and his eyes

> > periodically hurt. He tells me that they feel like they are on

fire

> > and they are extremely sensitive to light. He still gets the

high

> > fevers, but now he gets a rash (usually after the prednisone has

> > been given and the fever has stopped).

> >

> > Does any of this sound familiar to you??? I still wonder if

Shane,

> > who is 7 yrs old has systemic JRA. The doctor at Standford

today

> > feels JRA is a closer and more accurate diagnosis than his

original

> > diagnosis of .

> >

> > He is to take Naprocin (sp?) twice a day, along with Tagamet for

his

> > stomach.

> >

> > I would really appreciate any feedback you may have.

> >

> > Thanks a bunch!!!

> >

> > Beverly

> > Roseville, CA

> > mom to Nick (10), Shane (7) systemic?, and Maddy (5)

[Guest guest]

Beverly,

I am 5 days or so behind on post, but have seen enough to suggest

that you go to arthritis.org and look at all the juvenile arthritis

info. there that will explain some of your questions. Also,

download or order the brochure " Arthritis in Children " , and go to

all the web links that are listed on Georgina's web page.

Many of your questions may have already been answered by posts by

the time I catch up, but I don't want to repeat for the sake of

repeating. You can find drug info and classifications and what they

do on the arthritis site as well as in the brochure, just for

starters.

If you have a systemic, prednisone is only a bandaid, and you will

need a DMARD class of drugs or more to get control.

I hope this helps.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

Hi Merri,

Welcome to the group. I am 47 and have been on thyroxin only 6 months. I hit

a wall of depression during the 3rd month. Got nothing to feel specifically

sad about, but I have been through the whole crying for no reason at the

drop of a hat. I would cry over stupid things, and could not help it or stop

the tears. It was that, that led to my employers sending me home in mid

February. When they first sent me home I would get up take my meds, sit in a

chair and cry at the t.v. I did not want to wash or eat or answer the door

if any callers knocked the door. I am getting better now but still not 100%,

but importantly I AM GETTING BETTER, and I am sure you will in time too. I

do not think anti-depressants are the answer at least not for me. Hope you

feel better soon,

Val

New To the Group

> Hi Everyone,

>

> My name is Merri and I am 21 years old. About 4 weeks ago I was

> diagnosed with hypothyroidism. I was originally put on 25mcg of

> levothyroxine (generic). After two weeks on that, the doctor decided

> to switch me to a higher level, and put me on 50mcg of Levoxyl (brand

> name).

>

> I was wondering if anyone had any noticeable side effects in the first

> few weeks?

> I feel as if I've become really sensitive, irritable, and depressed.

> I am still very exhausted and have really not started to feel any

> better at all.

> The depressions is the thing that is bothering me the most right now

> as I feel as if I could cry at any moment.

>

> Any thoughts? Can anyone share their experiences with me?

>

> Thanks to all!

> Merri

>

>

>

>

>

>

>

>

[Guest guest]

Hmmmmm, that sounds familiar.

--- <veetee@...> wrote:

> Hi Merri,

>

> Welcome to the group. I am 47 and have been on

> thyroxin only 6 months. I hit

> a wall of depression during the 3rd month. Got

> nothing to feel specifically

> sad about, but I have been through the whole crying

> for no reason at the

> drop of a hat. I would cry over stupid things, and

> could not help it or stop

> the tears. It was that, that led to my employers

> sending me home in mid

> February. When they first sent me home I would get

> up take my meds, sit in a

> chair and cry at the t.v. I did not want to wash or

> eat or answer the door

> if any callers knocked the door. I am getting better

> now but still not 100%,

> but importantly I AM GETTING BETTER, and I am sure

> you will in time too. I

> do not think anti-depressants are the answer at

> least not for me. Hope you

> feel better soon,

>

> Val

>

>

>

>

> New To the Group

>

>

> > Hi Everyone,

> >

> > My name is Merri and I am 21 years old. About 4

> weeks ago I was

> > diagnosed with hypothyroidism. I was originally

> put on 25mcg of

> > levothyroxine (generic). After two weeks on that,

> the doctor decided

> > to switch me to a higher level, and put me on

> 50mcg of Levoxyl (brand

> > name).

> >

> > I was wondering if anyone had any noticeable side

> effects in the first

> > few weeks?

> > I feel as if I've become really sensitive,

> irritable, and depressed.

> > I am still very exhausted and have really not

> started to feel any

> > better at all.

> > The depressions is the thing that is bothering me

> the most right now

> > as I feel as if I could cry at any moment.

> >

> > Any thoughts? Can anyone share their experiences

> with me?

> >

> > Thanks to all!

> > Merri

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

eat the way your grandparents ate. See http://www.westonaprice.org We

used to know how to feed ourselves long before the food pyramid and

processed food came along! Use your brain and intuition! If you can't

pronounce an ingredient maybe you shouldn't eat it.

Gracia

> I haven't been able to find a good resource on what kind of diet I

> should be eating.

> Can you point me in the right direction?

>

> Thank you!

>

[Guest guest]

Val, cortisol would really help you.

Gracia

> Hi Merri,

>

> Welcome to the group. I am 47 and have been on thyroxin only 6 months. I

hit

> a wall of depression during the 3rd month. Got nothing to feel

specifically

> sad about, but I have been through the whole crying for no reason at the

> drop of a hat. I would cry over stupid things, and could not help it or

stop

> the tears. It was that, that led to my employers sending me home in mid

> February. When they first sent me home I would get up take my meds, sit in

a

> chair and cry at the t.v. I did not want to wash or eat or answer the door

> if any callers knocked the door. I am getting better now but still not

100%,

> but importantly I AM GETTING BETTER, and I am sure you will in time too. I

> do not think anti-depressants are the answer at least not for me. Hope you

> feel better soon,

>

> Val

>

>

>

>

[Guest guest]

Thanks for the tip - I'll check it out!

>

> eat the way your grandparents ate. See

http://www.westonaprice.org We

> used to know how to feed ourselves long before the food pyramid and

> processed food came along! Use your brain and intuition! If you

can't

> pronounce an ingredient maybe you shouldn't eat it.

>

> Gracia

>

> > I haven't been able to find a good resource on what kind of diet I

> > should be eating.

> > Can you point me in the right direction?

> >

> > Thank you!

> >

[Guest guest]

Dear Becca,

Welcome to our group.

> First, how long do you stay on phase one of the candida diet?

==>How long is individual, depending upon how sick you are, how long

you have had candida, and how quickly you can follow the diet

completely. I had to be on the diet 6 months before I could handle

antifungals. I kept trying antifungals but the die-off symptoms were

too overwhelming to stand while I was working. If I hadn't lost my job

I wouldn't have been able to tolerate the symptoms caused by

antifungals even at that point in time. Finally I pushed through the

symptoms. Some people are able to start on antifungals after being on

the diet 1 month; but those people are able to follow the diet strictly

much sooner than others. Hopefully you can follow the entire diet

within a month - the sooner the better!

>>Second, I'm unclear if you can consume home made goat's milk kefir

and coconut kefir? What about home made goat's milk yogurt in phase

one.

==>Some candida sufferers cannot tolerate kefir, even if it is homemade

and fermented long enough to remove most of the lactose. It don't

believe their intolerance is completely related to lactose content

however. Isn't coconut kefir made from coconut milk, which contains

sugar, whereas coconut oil is sugar-free. I don't know of anyone with

candida who has tried coconut kefir. Whether it is okay or not depends

on sugar content.

> I read a post from someone on one of the coconut group's about

> weight gain possibly being tied to candida.

==>Some people do become overweight due to candida, but on the diet I

recommend over time you would naturally lose weight.

>>Long story shortened, I did the spit test and watched in amazement

as my spital displayed all > three signs of candida immediately!

==>Wow! Keep us posted on how you are doing on the diet, etc. We are

here to help you get rid of this candida beast. Take good care.

Bee

[Guest guest]

In a message dated 6/22/05 12:58:05 AM GMT Daylight Time, jhn508@...

writes:

I am new to this group. I have been with Psoriasis since 1982 and just

recently with PA. My Rhuemy suggested Enbrel. I have not started yet

but have been reading some of the messages floating around.

Hi Jerry,

Welcome to the group. Good move. lol

I started on Enbrel in January. I was told to try and alternate as (They

said) if you keep injecting in the same spot every time, eventually a sort of

scar tissue builds up and then the enbrel tends to pool there and not disperse

the way it should. They say you can inject in the thighs, either side of the

stomach and the back of the upper arms. I personally just do the thighs and

stomach. It's no problem to do. I have not suffered any side effects or site

reaction issues but I know that some people do. It seems to be helping me

slowly but surely but again others have varying degrees of success or failure

with

it.

I hope it works well and quickly for you if you decide to go for it.

Let us know how you get on.

[Guest guest]

Hi Sara,

Welcome, you're in the right place. Hang around and read....

take care

Bev

Sara Hitchcock <sirinko19@...> wrote:

Hi. My name is Sara and I joined hoping to learn more about hypothyroidism.

I'm in the army and was diagnoised while getting help for another matter. Due

to the whole height/weight standard, its been alittle difficult for me lately.

Being deployed doesnt help either. I'm still in the process of getting my

medication level balanced out. Being in the army you might think that I'm in

great shape and weight shouldnt be an issue, but it is. I sit at a desk for 12

hrs a day. I'm looking for advice and help on exercise and nutrition. And any

support from fellow service members that might be here on dealing with

regulations and the lifestyle. Thanks.

Sara

__________________________________________________

[Guest guest]

Hi Vana-

I'm 34 had Psoriasis as long as I can remember.

Luckily my P stayed hidden in my scalp. Just after my

first son I started having a lot of pain. Then when I

became pregnant w/ my 2nd boy I started to hurt all

the time. I thought it was the weight on my small

frame. After he was born one of my fingers swoll up

for no apparent reason and remained that way for

months. I knew what I had ... I just need to be

" diagnosed " . Now these last 3 years my back and my

ankles that killed me were finally explained. I went

to see a Rheum. and basically he dissmissed me.

He stated I had " episodic " PA. And dismissed my ankles

and neck b/c there was no noticebale swelling. I tried

to explain the worst pain is the first hour or so of

waking up...thats when I can't walk.

Anyway, Now I must get a " second opinion " . Im beside

myself because I have a 3 yr old and a 1 yr old to

take care of....I have such fatigue if I don't get a

nap each day with them I am worthless. I also hurt all

the time just like you. I don't think I have it to the

degree you have it...but, Im afraid if they don't

start taking me seriousely I will end up in a wheel

chair by 40.

My husband is only home 2 days a week. Im alone and

basically a single mom. No family.

I'm sorry for you. You have come to the right place-

there are a lot of really smart people here who

totally understand what your going through.

Take Care,

Tricia

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

In a message dated 7/24/05 12:47:06 PM GMT Daylight Time,

borenparadise@... writes:

Hi everyone! My name is Vana and I'm a young 40 yrs. old. I've had P

for 11 yrs and PA diagnosed last Nov. I joined this group because no

one seems to understand the pain or exhaustion I feel. No one but my

husband, the sweetheart that he is, but he is in Iraq.

Hi Vana,

Welcome to the group. You will certainly get understanding about your pain

and exhaustion here. We know exactly what you are talking about. lol.

I think we need a sense of humour to be able to deal with this disease so

that's good that you own one.

I hope you will be glad you joined us. I'm sure you will be.

Take care,

[Guest guest]

I hope to

> talk with any of

> you who are so kind as to respond to my

> introduction.

Hi Vana, and welcome to the group.

I've got terrible pain in my feet and ankles too, so I

can sympathise with how much it hurts to walk and try

to do " normal " things. I just turned 45, seems like

when I hit 40 I started falling apart

I'm fortunate also, to have a very understanding

husband, step-daughter and son who often will do

things that they know are difficult for me. They are

very happy to wheel me through stores when we shop,

and although I feel silly not walking, it does make it

a more pleasant experience. I also have arthritis in

my hands and fingers, spine and jaw, but am still

working full time. My co-workers are very helpful as

well. I also know what you mean about driving, with

the fatigue I can even fall asleep while typing at my

computer!

I'm wondering what meds you're taking? Are you on a

DMARD to stop damage from continuing? Many of us also

get relief from biologics, massage and physical

therapy, as well as pain management (which sounds like

a good referral for you).

Stress is also a factor in our disease, and certainly

having your husband in Iraq can be very stressful.

Please jump right in here with your questions. We're

all here to share and help each other with support.

warm blessings,

jane

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

Dear Jane,

Thank you for the kind letter. As far as meds go they have me on Morphine

Sulfate and that is all. I'm still tyring to find a decent Rheumy that will

listen instead of just brush me off like a fly buzzing around his head.

My regular Doc is great and willing to try anythig to make me feel better but I

had to go off almost all my meds to prove it wasn't the meds causing the pain.

My podiatrist is beside himself with the stupidity of the Dr's I've had to deal

with and their lack of knowledge about this disease.

I'm tyring a new Rheumy next month after my husband goes back to Iraq. He should

be here tomorrow, thank God. My Dr. gave me a Prednisone Pack and that will at

least make me feel better while my sweetheart is home.

Jane I've been wrestling with this for a long time and I'm to the point where I

will not stop until a dr. listens to me. I've been diagnosed with it but why is

it so hard for the Dr's to treat it? Cna you give me a list of meds that I can

take with me to my appt.? I would really appreaciate it.

I hope this email finds you having a good day. Thank you again for your

kindness.

Love,

Vana

P.S. For those of you with muscle spasms, I've been taking Baclofen for several

yrs. now and it is wonderful. Normally given to patients with MS if prescribed

correctly will do wonders for your spasms. Love to you all. Vana

[Editor's Note: Some of the stronger meds that work for a number of us (but not

all), include Methotrexate, Arava, Humira, Enbrel, Remicade. They are all

strong meds and have potential side effects but the effects of not being treated

effectively can be far worse. There is a lot of information on each of these in

our archives and internet searches using PA and the name of the drug should give

you a lot of information to start reading. Then it's a question of trial and

error - one med works for me, but not for you, one med causes you terrible side

effects, but me none at all, etc. So there is no " best med " . Please feel free

to ask questions about these or other meds as you get more interested in them.

Kathy F.]

[Guest guest]

Hi Vana,

I'm in agreement in Kathy's footnote, there is no

" best " drug, as we respond differently to different

meds. The five listed are probably the most common

among all of us, and there's alot out there on the

internet about them. The bottom line is...sounds like

you really need to start trying one of them!

Most of us have had to go to one or more rheumys

before we find one that wants to treat us the way we

need to be treated. We've learned here that there are

different thoughts on how aggressively to treat the

disease and many different meds and combos of meds to

use in the battle.

Take some time to rearch the disease and its

treatments...you'll do yourself well by being able to

advocate for yourself with a doctor

warm blessings,

jane

--- Vana Boren <borenparadise@...> wrote:

> Dear Jane,

>

> Thank you for the kind letter. As far as meds go

> they have me on Morphine Sulfate and that is all.

> I'm still tyring to find a decent Rheumy that will

> listen instead of just brush me off like a fly

> buzzing around his head.

>

> My regular Doc is great and willing to try anythig

> to make me feel better but I had to go off almost

> all my meds to prove it wasn't the meds causing the

> pain. My podiatrist is beside himself with the

> stupidity of the Dr's I've had to deal with and

> their lack of knowledge about this disease.

>

> I'm tyring a new Rheumy next month after my husband

> goes back to Iraq. He should be here tomorrow, thank

> God. My Dr. gave me a Prednisone Pack and that will

> at least make me feel better while my sweetheart is

> home.

>

> Jane I've been wrestling with this for a long time

> and I'm to the point where I will not stop until a

> dr. listens to me. I've been diagnosed with it but

> why is it so hard for the Dr's to treat it? Cna you

> give me a list of meds that I can take with me to my

> appt.? I would really appreaciate it.

>

> I hope this email finds you having a good day. Thank

> you again for your kindness.

>

> Love,

>

> Vana

>

> P.S. For those of you with muscle spasms, I've been

> taking Baclofen for several yrs. now and it is

> wonderful. Normally given to patients with MS if

> prescribed correctly will do wonders for your

> spasms. Love to you all. Vana

>

> [Editor's Note: Some of the stronger meds that work

> for a number of us (but not all), include

> Methotrexate, Arava, Humira, Enbrel, Remicade. They

> are all strong meds and have potential side effects

> but the effects of not being treated effectively can

> be far worse. There is a lot of information on each

> of these in our archives and internet searches using

> PA and the name of the drug should give you a lot of

> information to start reading. Then it's a question

> of trial and error - one med works for me, but not

> for you, one med causes you terrible side effects,

> but me none at all, etc. So there is no " best med " .

> Please feel free to ask questions about these or

> other meds as you get more interested in them.

> Kathy F.]

>

>

>

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

Hi Pierwalker (sorry, don't know your real name)

Welcome to the group. I'm sorry that I can't help you with your query. I'm

in the UK but hopefully someone will have by now. I hope so because there is

no way you could keep spending half your earnings like that.

I'm sorry that your other health issues are stopping you from being able to

get what seems to be the best meds for the PA. Well done for changing the way

you do things, ie, cutting out most of the stress from your life. (How do you

manage it? lol)

Take care,

[Guest guest]

sounds like you have too much growth hormone...have you been tested?

Kerry

New to the Group

Good Evening

I am currently taking 720mg of Armour Thyroid a day (twice a day) I

didn't put any weight on until I was 32. At age 32 I grew 2 inches

taller and my shoe went from a 9 to an 11 and now I am at a 14.

Everyone that I see wants to band the stomach or remove parts of it.

Overeating is not the probelm, in fact I would be surprised if we got a

2500 calories a day. I have tried Optifest twice lost the weight but

it came back. I am at my wits end with this problem; the Bariatric

Physician that I am seeing has helped however, I am wondering if there

is not something else we can do. Before anyone asks, everything else

is fantastic.

[Guest guest]

>

> Kerry might be right about overactive HGH but it also sounds like hormone

> resistance, b/c you are on a huge amount of Armour. In that case you

would

> need cortisol, DHEA and some other hormones. Look at Hormone Solutions

by

> Thierry Hertoghe MD Please don't let docs operate on your stomach!

> Gracia

>

> > Good Evening

> >

> > I am currently taking 720mg of Armour Thyroid a day (twice a day) I

> > didn't put any weight on until I was 32. At age 32 I grew 2 inches

> > taller and my shoe went from a 9 to an 11 and now I am at a 14.

> > Everyone that I see wants to band the stomach or remove parts of it.

> >

> > Overeating is not the probelm, in fact I would be surprised if we got a

> > 2500 calories a day. I have tried Optifest twice lost the weight but

> > it came back. I am at my wits end with this problem; the Bariatric

> > Physician that I am seeing has helped however, I am wondering if there

> > is not something else we can do. Before anyone asks, everything else

> > is fantastic.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

,

First I want to say, that I felt like I was reading a fast forward version

of my diaries... (you are better at getting to the point that I ever will be

though. LOL)... anyways, That feeling of loss just finally started to

diminish when I started putting lyme in the BACK BURNER versus concentrating

on killing it. Lyme disease is such a horrible illness. I hate so many

thiings about it...but the thing TOP OF MY LIST is getting treatment for it.

It seems to be a never-ending problem to get the doctors to be

understanding. I had a great doctor who recognized my problem and treated

me, then he retired...Then I started back to square one with bad doctors

agin. So basically, the frustration is always there...the FEAR that nobody

will be able to help me when I know its LYME and not arthritis...when I know

it's Lyme and not Pink EYE...when I know it's Lyme and not laziness, etc.

Anyway, I don't want to make you feel bad, I want you to realize that

there is A way of " managing " lyme so that you can get your life back. I'm

not cured of Lyme, however, I have not had HALF of the DRUGS that people on

this board have had. I've only had Flagyl & Cephalexin, but those are enough

to help me get back on track. I had such horrible brain fog, and I'm just so

GLAD to recognize the world as I remembered it... I can't complain now.

There are so many problems that I thought was just " old age " (and i'm only

36) LOL. My brain couldn't make sense of things, and now things are coming

together...with a combination of exercise & good eating like i've never

known it to be so satisfying. Sometimes doing the " right thing " makes total

sense now. Okay... well I ramble constantly, and ADD is another obstacle

that I haven't been able to overcome...(but when I start working again, it's

going to get messy, ugh). Anyways, welcome to the group, and feel free to

privately email me if you need to. Depression is one of the things that WILL

PASS!!! I know, because I was put on meds for it for several years...and

guess what? it was LYME. You will see the " light " and you will get your life

back. I know it.....as long as your still alive and kicking, you still have

a life. It's just taken a small detour or a pause, like mine has for the

last 6 years (okay, I'm not doing a good job of cheering you up am i? LOL).

oh dear. Keep in touch, and feel free to email me privately if you need an

ear. The people on this group have lots of good suggestions, and I usually

just LISTEN, I save a lot of stories like yours, because it puts into words

what I CAN'T.

Take care,

on 10/6/05 11:29 PM, lymiegirl at lymiegirl@... wrote:

> Hello everyone,

>

> This is my first time here so I will give you a quick run down. I

> have been sick for almost 4 years now and was first misdiagnosed

> with ALS before finding...on my own and no thanks to the wonderfull

> neurologists I've had...that I actually have Lyme disease. I began

> treatment at the start of Septmeber so I am in full Herxing mode but

> optimistic mainly due to the alternate diagnosis previously given to

> me.

> I am 30 years old and so aside from the pain, confusion, fatigue,

> loss of dexterity and strength in my extremity's, etc...etc...I

> suffer from a great feeling of loss. Like my life has been

> completely taken from me. I have always been a very social and

> active person. I have worked my way from serving tables for 10

> years to being a Manager at a Dealership and now I sit at home

> alone...unable to really do anything. I've lost my

> independance...my life as I had worked so hard to get. How do you

> get through this feeling of loss? I find it the biggest struggle of

> the day, dealing with depression.

> I feel guilty even having these feelings given the fact that

> according to my previous Doctors I had ALS. I just can't diminish

> them entirely.

> Well, sorry for the poor me fest. I just wanted to know if others

> struggle with this too.

> Thanks for your ear.

>

>

[Guest guest]

Welcome !! I've had lyme 19 years, I thought it was CFS. I

just started treatment this spring for Lyme.

I think it's normal to be depressed when faced with such a hurtle.

It got much easier for me with time. I came to accept what happened

and got on with my life.

I don't know how anyone gets through this, I think it's different

for everyone. I hope you have a good support system there with your

family and friends. I know that was what helped me the most.

Take care,

Kathy

>

> Hello everyone,

>

> This is my first time here so I will give you a quick run down.

I

> have been sick for almost 4 years now and was first misdiagnosed

> with ALS before finding...on my own and no thanks to the

wonderfull

> neurologists I've had...that I actually have Lyme disease. I

began

> treatment at the start of Septmeber so I am in full Herxing mode

but

> optimistic mainly due to the alternate diagnosis previously given

to

> me.

> I am 30 years old and so aside from the pain, confusion, fatigue,

> loss of dexterity and strength in my extremity's, etc...etc...I

> suffer from a great feeling of loss. Like my life has been

> completely taken from me. I have always been a very social and

> active person. I have worked my way from serving tables for 10

> years to being a Manager at a Dealership and now I sit at home

> alone...unable to really do anything. I've lost my

> independance...my life as I had worked so hard to get. How do you

> get through this feeling of loss? I find it the biggest struggle

of

> the day, dealing with depression.

> I feel guilty even having these feelings given the fact that

> according to my previous Doctors I had ALS. I just can't diminish

> them entirely.

> Well, sorry for the poor me fest. I just wanted to know if others

> struggle with this too.

> Thanks for your ear.

>

>

>

[Guest guest]

my cousin was diagnosed with als and found to be

lyme..

hang in there it will get better..it is going to take

a while so just relax . my cousins als is stopped and

he is ok so far ...

mino seems to be a good antibiotic...

eric

--- lymiegirl <lymiegirl@...> wrote:

> Hello everyone,

>

> This is my first time here so I will give you a

> quick run down. I

> have been sick for almost 4 years now and was first

> misdiagnosed

> with ALS before finding...on my own and no thanks to

> the wonderfull

> neurologists I've had...that I actually have Lyme

> disease. I began

> treatment at the start of Septmeber so I am in full

> Herxing mode but

> optimistic mainly due to the alternate diagnosis

> previously given to

> me.

> I am 30 years old and so aside from the pain,

> confusion, fatigue,

> loss of dexterity and strength in my extremity's,

> etc...etc...I

> suffer from a great feeling of loss. Like my life

> has been

> completely taken from me. I have always been a very

> social and

> active person. I have worked my way from serving

> tables for 10

> years to being a Manager at a Dealership and now I

> sit at home

> alone...unable to really do anything. I've lost my

> independance...my life as I had worked so hard to

> get. How do you

> get through this feeling of loss? I find it the

> biggest struggle of

> the day, dealing with depression.

> I feel guilty even having these feelings given the

> fact that

> according to my previous Doctors I had ALS. I just

> can't diminish

> them entirely.

> Well, sorry for the poor me fest. I just wanted to

> know if others

> struggle with this too.

> Thanks for your ear.

>

>

>

>

>

>

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

I know how you feel. I alternate between being angry at not being

diagnosed 15 years ago to relief that I'm finally getting treated.

When I first began abx treatment I had some really scary herx attacks.

I noticed that my mild depression, which I had previously controlled

with exercise and diet, really deepened as well, to dangerous levels.

I toughed it it out for a few months but I finally admitted to my GP

that my I was worried about the depression and the dark thoughts it

was generating. He put me on a low dose of paxil, which after two

months is starting to make me a lot more cheerful. I'm still fatigued

but it's now a cheery fatigue... After 6 months of abx I'm still very

fatigued but my arthritis is mostly gone and I can feel myself getting

stronger everyday. I was treated twice during this time for babesiosis

and I made dramatic improvements after that so you may want to look

for co-infections as well.

I don't know how mobile you are but I found it useful to try and visit

relatives and friends, even if only to get out of the house. I also

try and go out and have a cup of tea or coffee and read the paper to

keep my mind engaged.I find it very hard to visit friends now because

I don't have the energy to initiate activities but I still try to make

an effort. I actually prefer dropping in on close relatives and just

hang out for a while. I have difficulty concentrating long enough to

read books but I still make the effort to read to exercise my mind. I

Find that studying about LD and it's common co-infections gives me a

sense of empowerment. I have also lost my trust in doctors but not in

a negative way. Now I try to understand the theory behind any

treatment that is recommended. I also understand that my GP in 1990

was acting upon the poor information that he was given at the time but

I had to struggle with feelings of anger towards him. The other thing

to consider is that you now have a clear focus on how precious life is

and when you recover you will probably have a real drive to enjoy

life. I remember how much time I squandered in my youth. I wish I was

30 again...but you are still ahead of the game compared to many people

who are healthy but lack a sense of purpose.

We are both fortunate in that LD is finally getting some recognition

and serious study. I would suggest that you watch the " Literati with

Lyme " video. I found it to be very inspirational. Knowledge about the

different forms that the BB spirochete can take is also gaining ground

so that dual abx treatments can be given that attack both the active

and cystic form. DR Murakami showed me several case studies. One was a

young woman who went from being totally wheel chair bound to fully

recovered after 8 months of abx.

always hopeful

Duncan

>

> Hello everyone,

>

> This is my first time here so I will give you a quick run down. I

> have been sick for almost 4 years now and was first misdiagnosed

> with ALS before finding...on my own and no thanks to the wonderfull

> neurologists I've had...that I actually have Lyme disease. I began

> treatment at the start of Septmeber so I am in full Herxing mode but

> optimistic mainly due to the alternate diagnosis previously given to

> me.

> I am 30 years old and so aside from the pain, confusion, fatigue,

> loss of dexterity and strength in my extremity's, etc...etc...I

> suffer from a great feeling of loss. Like my life has been

> completely taken from me. I have always been a very social and

> active person. I have worked my way from serving tables for 10

> years to being a Manager at a Dealership and now I sit at home

> alone...unable to really do anything. I've lost my

> independance...my life as I had worked so hard to get. How do you

> get through this feeling of loss? I find it the biggest struggle of

> the day, dealing with depression.

> I feel guilty even having these feelings given the fact that

> according to my previous Doctors I had ALS. I just can't diminish

> them entirely.

> Well, sorry for the poor me fest. I just wanted to know if others

> struggle with this too.

> Thanks for your ear.

>

>

>

[Guest guest]

i was misdaignosed for many years...I am now 40 years old.i also feel my life

has been taken away.i always sufferd depression and now its even worse.I

understand the guilt of feeling like this.my good friend from childhood has

ALS...compared to his troubles my are few.however...it can still be over

whelming.this message board is great place to learn.You soon will find that the

things you thought surely noone else could understand or even believe will be

understood and believed here.good luck.I have been taking effexor for my

depression and anxiety...i didnt want to but it does help...it helps others to

deal with me hahaha i have bouts of rage,pain and fatigue from he%%!my legs are

weak and and one point during treatment i developed a parkinson type syndrom

that really freaked me and the family out!i was told it was caused from the

toxins being released from the bacteria over loading my nervous systemi had to

stop treatment as it was going to be harder on my body than living with it will

be at this late of a stage.i have good days and bad like everyone.i am told i

have coinfections and that they can go into remittic phases...thats where i am

at for now.

beth

--- " lymiegirl " <lymiegirl@...> wrote:

From: " lymiegirl " <lymiegirl@...>

Date: Fri, 07 Oct 2005 04:29:09 -0000

Subject: [ ] New to the group

Hello everyone,

This is my first time here so I will give you a quick run

down. I

have been sick for almost 4 years now and was first

misdiagnosed

with ALS before finding...on my own and no thanks to the

wonderfull

neurologists I've had...that I actually have Lyme disease. I

began

treatment at the start of Septmeber so I am in full Herxing

mode but

optimistic mainly due to the alternate diagnosis previously

given to

me.

I am 30 years old and so aside from the pain, confusion,

fatigue,

loss of dexterity and strength in my extremity's, etc...etc...I

suffer from a great feeling of loss. Like my life has been

completely taken from me. I have always been a very social and

active person. I have worked my way from serving tables for 10

years to being a Manager at a Dealership and now I sit at home

alone...unable to really do anything. I've lost my

independance...my life as I had worked so hard to get. How do

you

get through this feeling of loss? I find it the biggest

struggle of

the day, dealing with depression.

I feel guilty even having these feelings given the fact that

according to my previous Doctors I had ALS. I just can't

diminish

them entirely.

Well, sorry for the poor me fest. I just wanted to know if

others

struggle with this too.

Thanks for your ear.

[Guest guest]

Hi,

Although there is not much faith on test results,I

would still suggest you get yourself tested for

thyroid disease.You can go for the following blood

tests:

1.Free T3,T4,TSH

2.Thyroid Anti-body Panel (TPO,Tg).

At leat u will have some idea on where u stand.

Puneet

--- Misty <majgh1@...> wrote:

> Hi Everyone,

>

> My name is Misty and as you can tell from the

> subject line I'm

> new. I think I may have hypothyroidism but I'm not

> sure.

> Everything I read tells me something different. I'm

> terrified of

> going to the doctor and having him tell me I'm crazy

> or just looking

> for an excuse because I'm overweight. But I don't

> think I'm crazy.

> I've been overweight my ENTIRE life and I'm 22.

> Right now by

> medical standards I'm morbidly obese (a label that

> I'm sure the

> world could have done without). I don't eat anymore

> than anyone

> else I know or anymore than I always have and no

> matter how much I

> exercise I keep gaining weight slowly. I was really

> excited about

> going to college because I was going to have to do a

> LOT of walking

> and I was sure I would lose weight once I got away

> from my moma's

> home cooking and into some regular exercise.

> Instead I just kept

> gaining. Lately I've been feeling worse. I work a

> full time job

> and go to graduate school which would tire anyone

> out but the way

> I'm feeling is more. My body temperature is always

> around 96.5, my

> feet are always painfully swollen, the outsides of

> my feet are too

> sore to touch, when I walk anywhere I lose my breath

> and have to

> stop, my knees ache all the time, my nails are

> brittle, I have

> trouble sleeping sometimes and then sometimes I

> sleep so soundly

> that I can't seem to pull myself out of sleep and I

> get depressed

> sometimes and just feel like crying for hours but

> I'm regularly a

> pretty happy person despite my size. My GP is

> always trying to tell

> me that I am remarkably healthy for someone my

> size... my blood

> pressure and sugar levels are normal. He acts like

> its all my fault

> that I'm overweight and puts me on diets that never

> work. I was

> thinking of taking Alvidar without seeing a doctor

> just so I

> wouldn't have to go through the embarassment of

> another one telling

> me I'm crazy. I'm sorry this email was sooo long.

> I just thought

> someone here might understand what I'm going through

> and I would

> finally have someone to talk to who understands.

>

> Thanks,

> Misty

__________________________________

FareChase: Search multiple travel sites in one click.

http://farechase.

[Guest guest]

Misty -

I TOTALLY know how you feel. I was in the same boat.... and I still

am. I am working full time and going to school.. or at least I was...

and I was gaining weight and feeling overall horrible. Tired all the

time and alot of " highs and lows " . I didn't want to go to the doctor

either because I had been in there many times before for the same

reasons as well as for sports injuries and every time I was told that

I am too fat and that I just need to exercise more. No matter what my

problem was, I was told that my weight was to blame. Then I just got

to the point where I was feeling even worse.. I was sick all the time

and nothing to explain it. I went in for a physical. After a few

months of tests and such, I was diagnosed with a severe case of

Hashimoto's Disease. It was partically a relief to have some answers

but I still am fighting alot of symptoms that haven't gone away. Some

symptoms have gotten worse and some are just totally brand new. I am

in the process of seeing my endocrinologist a few times a year to get

me feeling " normal " . I have also started some contact with s

Hopkins Medical Center to see if I can get a second-opinion

consultation.

The best thing for you to do know is to just take your health in your

own hands. If you feel that you aren't getting the right treatment,

demand correct treatment. Or continue to bug your doctors until they

take you seriously. If you find still no hope, you might want to look

for a new doctor. Check around to see who takes your insurance or if

there are any local programs you can get into to help you. But, all

in all, get checked out anyway that you can because if you do have

this disease or any other thyroid disease you need help now before

things get serious. I wish I would have gone sooner but I didn't know

either and I don't want anyone to feel the same pains I experience

every day.

>

> > Hi Everyone,

> >

> > My name is Misty and as you can tell from the

> > subject line I'm

> > new. I think I may have hypothyroidism but I'm not

> > sure.

> > Everything I read tells me something different. I'm

> > terrified of

> > going to the doctor and having him tell me I'm crazy

> > or just looking

> > for an excuse because I'm overweight. But I don't

> > think I'm crazy.

> > I've been overweight my ENTIRE life and I'm 22.

> > Right now by

> > medical standards I'm morbidly obese (a label that

> > I'm sure the

> > world could have done without). I don't eat anymore

> > than anyone

> > else I know or anymore than I always have and no

> > matter how much I

> > exercise I keep gaining weight slowly. I was really

> > excited about

> > going to college because I was going to have to do a

> > LOT of walking

> > and I was sure I would lose weight once I got away

> > from my moma's

> > home cooking and into some regular exercise.

> > Instead I just kept

> > gaining. Lately I've been feeling worse. I work a

> > full time job

> > and go to graduate school which would tire anyone

> > out but the way

> > I'm feeling is more. My body temperature is always

> > around 96.5, my

> > feet are always painfully swollen, the outsides of

> > my feet are too

> > sore to touch, when I walk anywhere I lose my breath

> > and have to

> > stop, my knees ache all the time, my nails are

> > brittle, I have

> > trouble sleeping sometimes and then sometimes I

> > sleep so soundly

> > that I can't seem to pull myself out of sleep and I

> > get depressed

> > sometimes and just feel like crying for hours but

> > I'm regularly a

> > pretty happy person despite my size. My GP is

> > always trying to tell

> > me that I am remarkably healthy for someone my

> > size... my blood

> > pressure and sugar levels are normal. He acts like

> > its all my fault

> > that I'm overweight and puts me on diets that never

> > work. I was

> > thinking of taking Alvidar without seeing a doctor

> > just so I

> > wouldn't have to go through the embarassment of

> > another one telling

> > me I'm crazy. I'm sorry this email was sooo long.

> > I just thought

> > someone here might understand what I'm going through

> > and I would

> > finally have someone to talk to who understands.

> >

> > Thanks,

> > Misty

>

>

>

>

> __________________________________

> FareChase: Search multiple travel sites in one click.

> http://farechase.

>