Hello

[Guest guest]

Sheryl,

When I first had my depth perception problem I had read somewhere that we learn

this when we learn to crawl-so I crawled and crawled and crawled-It

must have helped some although in driving since I am aware of my problem I never

wait until the last minute to stop-it seems that when movement is

fast it still doesn't work. In the beginning if I was walking in a store and the

floor gradually sloped or changed without a step, it would

immediately make my stomach flip flop.

Watched a movie of my son's wedding and reception last nite, I sat and cried as

there I was walking normal-I'll get there yet!

Coleen

Sheryl wrote:

> Coleen,

> I can't speak for Roe but I have dept perception problems. I believe it

> goes along with the neurological problems

> Sheryl

> Re: [ ] Hello

>

> > nne,

> > My, your symptom of the head with jello inside and the brain moving

> around. I had this right after a closed head injury, so now hmmmm... I used

> to

> > say my brain had to much juice around it and I really thought I could feel

> it. One is not supposed to feel one's own brain, are they. It was before

> > August of 1985 that I got sick and this strange feeling came on after the

> closed head injury in Feb of 1986. I have read that big stressful

> > happenings can bring on many Lyme symptoms all at once and I have for the

> 2 yrs that I have learned I have Lyme wondered because the symptoms I had

> > immediately after the head injury were the same as you are having. My

> seizures though were just a smell thing, I would smell a smouldering garbage

> > file, I checked my house and outdoors everytime but the only thing,

> including medication, to make them go away was to just lay down and quit

> doing

> > what I was doing. Weird thing as I could fill a hanky with perfume and

> still smell this smell through the perfume.

> > I have found over these 15 undiagnoised years, 17 yrs now that symptoms

> stay about 6 months and then most of them leave, only to be replaced by

> > another one.

> > I did go to a neurophycoligist(its not spelled correctly) for a year for

> individual and groups therapy sessions on short term memory, probably some

> > other things too but then who can remember. Of course too, these symptoms

> overlap as to when they come and go. I have learned with Lyme if you don't

> > use it you will loose it so I have always stayed very active in the brain

> part. I just came off a very bad year, had the fog so bad so not quite

> > sure what all I did do but now that the fog has " lifted " I really realize

> how much of the brain workings are troubling me-I can't imagine how bad I

> > would be had I not continued to keep it active.I do have one advantage, I

> do or am working on my family genealogy. THAT keeps the brain active to

> > say the least. I am able to find info on family but I do have problems

> keeping members straight when filling out family sheets-to be honest I am

> > putting most of them off hoping since I am improving so much I will get

> better in the brain part and not really mess them up good like I know I can.

> >

> > Just wanted you to know that's the first time I ever heard of someone

> else's brain feeling like mine did so many years ago. Have you ever had a

> > depth perception problem?

> > Coleen

> >

> > nne wrote:

> >

> > > Sheryl, same thing with me! I have what may be irreversible damage to

> > > certain parts of my brain. I can not learn new things, its so

> frustrating

> > > and I am on anti seizure medication. today I am having one of my jello

> > > brain days. its like my brain is loose inside my head, if I move my head

> to

> > > the left, my brain takes time to come with it. geeze that makes no

> sense.

> > > if I told you the rest of my neurological symptoms, I might be put in a

> > > rubber room! ask your hubby for his patience.

> > >

> > > roe

> > >

> > >

[Guest guest]

Pepi and All,

I think these problems are something we can all relate to at one time or

another. I find many things to be cyclic. My depth perception problems, reading

and writing, memory, all were much worse a few years ago, earlier in my

treatment. I've seen a lot of improvement, but it still cycles down a bit at

times.

Pepi, I'm sorry you're having driving problems now. Especially since you have to

drive so far to see the doc. That's gotta be scary. I can say that for about 3

years I was terrified of driving, mainly because of my earlier seizure activity.

It's better for me now, though I don't have to drive much, for other reasons. A

lot of my problem was driving a stick shift when I shouldn't have been. That

required much more brain activity and musular strength and overall coordination

than was smart to do. Being forced to get a different car with an automatic

" solved " a lot of what I perceived to be " driving " problems. Now it's much

easier for me to drive. Also, visibility in a vehicle makes a lot of

difference.We take so much for granted about our former abilities. However, you

have a much " bigger " problem with that big truck. I don't blame you for feeling

like it is sliding out from under you. I'd be a little scared, too, of driving

it.

I know what you mean about weighin 3 tons. I describe it as " body heaviness. "

Like you just can't propel your body forward, or it takes all your energy!. And

that feeling of collapse! Gotta sit down, lay down or your gonna FALL down. No

control over these dern muscles. Just won't do what you want them to do anymore.

Very frustrating!

I still keep lists of everything! I'd forget my head if it wasn't fastened on,

as mother used to say! I think that has become habit, 'cause as soon as I rely

on memory, then I'll forget something important. and I have learned to

double-check each other. Sometimes that doesn't work either and we both forget!

From: " Rodney & " <rod@...>

Subject: Re: Hello

but I have dept perception problems. I believe it

> goes along with the neurological problems

> > My, your symptom of the head with jello

inside and the brain moving

> around.

<snip> When driving,

which I try to not do now, I feel like the tail

of my truck is sliding out,

guess thats a vertigo thing?

Memory is all but

shot, have lists all over to

keep me in line. hubby took me to the store the

other day and I left my list

at home, I went in for one thing and dangit if I

got a load of stuff and

that one thing is still at the store LOL.

Anyone

get the feeling of weighing

a ton all the time? I know I didnt say that

right, I have mind-numbing

fatigue, the kind that tells you to go lay down,

*right now* when I get that

tired I feel like my arms and legs are weighed

down. God I hate this

disease. Pepi

T.O.I.L. for Lyme!

T=Teach tolerance; O=Overcome ignorance; I=Initiate insurance reform; L=Labor

for Lyme literacy

*Our websites*

http://www.angelfire.com/tx3/RoseWriter or

http://www.angelfire.com/biz/romarkaraoke/james.html

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

[Guest guest]

Dear ,

Unfortunately, these hurtful comments are common because people don't/can't

understand. Just remember that stupid people say stupid things. You can't

control them anymore than you can control having this disease. It's easy to say

" Don't worry about it " but that's about all you can do. You need to keep on

doing the things that make you feel better and help you cope with this disease.

You can't hide inside or hide from the cruelty of others! You have us, and we

understand and care. You're not alone, by any means. (I don't mean to imply that

it is easy to deal with, because it isn't.)

Love ya lots, Rose

From: michelle cervera

<cuteangel54321@...>

Subject: Re: Hello

im sick of people i just went outside to lie down

to

relax and my neigbors said get ajob i said i cant

work

they said yes you can imstarting to hate alot of

people i lost my freiends from this and my family

i

cant take this stupid remarks.

T.O.I.L. for Lyme!

T=Teach tolerance; O=Overcome ignorance; I=Initiate insurance reform; L=Labor

for Lyme literacy

*Our websites*

http://www.angelfire.com/tx3/RoseWriter or

http://www.angelfire.com/biz/romarkaraoke/james.html

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

[Guest guest]

Dear a,

I'm so sorry your son hurt you that way! Insensitivy is so very hard

to deal with at any time. Having a family member (children

especially) be so insensitive is the hardest of all to bear,

especially when you are trying to do your best to help them.

Only time can help develop a " tougher " skin, but these wounds still

penetrate, no matter how hard we try or how much we smile through our

tears. That's why I'm glad we at least have each other. Might not

replace the others in our lives who ignore us or mistreat us, might

not be enough, but it's better than nothing. I wish I could offer

more, wish we were closer together. Hang in there!

Love ya, Rose

=====>

> Dear Rose & all,

>

> Hi, what you say is true, totally true, but I'm in the same

position that

> is in.

> Even tho I know that I can only control myself & my action &

words, .....

> still the cruel actions & words of others hurt me so much, often

like my

> heart being pierced. I'm just so emotional & sensitive. I try to

be so

> helpful to others, it would never occur to me to hurt anyone in any

way, but

> there are hordes of others who think only of themselves & who are

mean,

> spiteful & selfish to the core.

>

> This may not be exactly related, but last week I went shopping for

a lamp &

> small area rug that my son said he needed for his new college

> dormitiory room. I found him a very nice, simple, solid navy-blue

lamp with

> a little style, hexagonal, small Oriental type base, but very

discrete, you'd

> notice it only if you looked closely. It was inexpensive, and I

thought he'd

> be THRILLED to have it. I displayed it, was eagerly awaiting the

happy,

> excited look on his face when he walked in the door after school.

I was

> expecting a warm hug. I told him how I had been thinking of him &

trying to

> help him prepare for college & would go with him any time to shop

for the

> lampshade of his choice.

> Instead, he yelled at me for at least 15 minutes about how dare I

get it

> without consulting him, how it was too large, how he had no

interest in

> shopping for either lamps or lampshades, how it was too masculine,

not the

> right anything, & just because I interfered in his life by trying

to

> " pretend " to help him, he would rather smash it than use it.

>

> He had me in tears for hours. All I could say thru my tears was

that the

> lamp was unimportant, it cost less than $10, he could give it away

to someone

> who would love it & want to use it, but that my feelings were more

important &

> that I truly love him & was trying to help him.

>

> I don't understand why it hurts me so badly, as do so many other

things.

> Sometimes I can't understand how there could be any more tears left

inside

> me, I hurt so badly. His father, my ex, treats me much worse,

never forgets

> to remind me that I'm a total hypocrite & hypochondriac, that there

could not

> be anything wrong with me, you all know that scene, because I " look

healthy. "

>

> I'm on an anti-depressant now & it is helping a bit, but my heart

still feels

> so broken & I feel so hurt deep down. I wish I had a lover or

supportive

> spouse, but am all alone. Knowing how all my life I've wanted to

help others

> & have always done so, I need to find out how to connect with

others who feel

> the same way, who can give & care. The support here is wonderful,

but it

> isn't enuf.

> Can anyone offer other suggestions for me & the others here that

are in the

> same position? How can we get " tougher skins? "

>

> Yes, I am in therapy, in case you are wondering.

>

> Love to all,

> a

>

>

>

[Guest guest]

,

I don't know what your other symptoms are but I do know that I have Lyme.

Mine has gone to a neurological state and believe me I truely believe at

times that I have lost my ever lovin mind. Have you seen a neurologist and

had an MRI done. My had gone to the state that recently I was hospitalized

for an infection on my brain. Trust me your not alone. My husband God love

him, sometimes thinks I have gone by-polar, and at times I think he's gonna

lock me up in a padded room. Have you had a Western Blot done? That along

with making a list of your symptoms would be the first step. Take it easy on

your self. What helps me is that I have learned to laugh at my brain fog, if

not I would truely go nuts.

Sheryl

Re: [ ] Hello

> >

> >

> > > nne,

> > > My, your symptom of the head with jello inside and

> > the brain moving

> > around. I had this right after a closed head injury,

> > so now hmmmm... I used

> > to

> > > say my brain had to much juice around it and I

> > really thought I could feel

> > it. One is not supposed to feel one's own brain, are

> > they. It was before

> > > August of 1985 that I got sick and this strange

> > feeling came on after the

> > closed head injury in Feb of 1986. I have read that

> > big stressful

> > > happenings can bring on many Lyme symptoms all at

> > once and I have for the

> > 2 yrs that I have learned I have Lyme wondered

> > because the symptoms I had

> > > immediately after the head injury were the same as

> > you are having. My

> > seizures though were just a smell thing, I would

> > smell a smouldering garbage

> > > file, I checked my house and outdoors everytime

> > but the only thing,

> > including medication, to make them go away was to

> > just lay down and quit

> > doing

> > > what I was doing. Weird thing as I could fill a

> > hanky with perfume and

> > still smell this smell through the perfume.

> > > I have found over these 15 undiagnoised years, 17

> > yrs now that symptoms

> > stay about 6 months and then most of them leave,

> > only to be replaced by

> > > another one.

> > > I did go to a neurophycoligist(its not spelled

> > correctly) for a year for

> > individual and groups therapy sessions on short term

> > memory, probably some

> > > other things too but then who can remember. Of

> > course too, these symptoms

> > overlap as to when they come and go. I have learned

> > with Lyme if you don't

> > > use it you will loose it so I have always stayed

> > very active in the brain

> > part. I just came off a very bad year, had the fog

> > so bad so not quite

> > > sure what all I did do but now that the fog has

> > " lifted " I really realize

> > how much of the brain workings are troubling me-I

> > can't imagine how bad I

> > > would be had I not continued to keep it active.I

> > do have one advantage, I

> > do or am working on my family genealogy. THAT keeps

> > the brain active to

> > > say the least. I am able to find info on family

> > but I do have problems

> > keeping members straight when filling out family

> > sheets-to be honest I am

> > > putting most of them off hoping since I am

> > improving so much I will get

> > better in the brain part and not really mess them up

> > good like I know I can.

> > >

> > > Just wanted you to know that's the first time I

> > ever heard of someone

> > else's brain feeling like mine did so many years

> > ago. Have you ever had a

> > > depth perception problem?

> > > Coleen

> > >

> > > nne wrote:

> > >

> > > > Sheryl, same thing with me! I have what may be

> > irreversible damage to

> > > > certain parts of my brain. I can not learn new

> > things, its so

> > frustrating

> > > > and I am on anti seizure medication. today I am

> > having one of my jello

> > > > brain days. its like my brain is loose inside my

> > head, if I move my head

> > to

> > > > the left, my brain takes time to come with it.

> > geeze that makes no

> > sense.

> > > > if I told you the rest of my neurological

> > symptoms, I might be put in a

> > > > rubber room! ask your hubby for his patience.

> > > >

> > > > roe

> > > >

> > > > [Non-text portions of this message have been

> > removed]

> > > >

> > > > Welcome to

> > > >

> > > > Easy Reference:

> > > > Send a blank email message to:

> > > >

> > > > -Unsubscribe -

> > Unsubscribe from the list

> > > > -Digest - Switch your

> > subscription to a digest

> > format

> > > > -Normal - Switch your

> > subscription to normal

> > > >

> > > > Please send messages not related to Lyme disease

> > (this includes humor

> > and information about other diseases) to

> > -Offtopic

> > > >

> > > > The archives can be accessed at

> >

> > > >

> > > > The chat room is always open!

> > > > /chat

> > > >

> > > >

[Guest guest]

,

Your not alone. I don't know what your other symptoms are but my disease

has gone neurological. Don't worry what other idiots say or think. Have you

had a Western Blot done? If not that is the first step. Sometimes I think I

have lost my ever lovin mind, and that my family is going to have me locked

up in a padded room. Find out what is going on first. Alos I have learned to

laugh at my brain fog, and to appologize when I loose it toward my family,

those that understand anyhow. My brother and sister-in-law won't come by my

house or bring my nephews by anymore, because thay think I'm contagious. Let

stupid people that don't want to learn alone you don't need that right now

and consentrate on getting better. Look at me I can't spell anymore and I'm

a journalism major who has worked on several newspapers. I can't sweat the

small stuff right now, I need to get healthy first.

Sheryl

Re: [ ] Hello

> >

> >

> > > nne,

> > > My, your symptom of the head with jello inside and

> > the brain moving

> > around. I had this right after a closed head injury,

> > so now hmmmm... I used

> > to

> > > say my brain had to much juice around it and I

> > really thought I could feel

> > it. One is not supposed to feel one's own brain, are

> > they. It was before

> > > August of 1985 that I got sick and this strange

> > feeling came on after the

> > closed head injury in Feb of 1986. I have read that

> > big stressful

> > > happenings can bring on many Lyme symptoms all at

> > once and I have for the

> > 2 yrs that I have learned I have Lyme wondered

> > because the symptoms I had

> > > immediately after the head injury were the same as

> > you are having. My

> > seizures though were just a smell thing, I would

> > smell a smouldering garbage

> > > file, I checked my house and outdoors everytime

> > but the only thing,

> > including medication, to make them go away was to

> > just lay down and quit

> > doing

> > > what I was doing. Weird thing as I could fill a

> > hanky with perfume and

> > still smell this smell through the perfume.

> > > I have found over these 15 undiagnoised years, 17

> > yrs now that symptoms

> > stay about 6 months and then most of them leave,

> > only to be replaced by

> > > another one.

> > > I did go to a neurophycoligist(its not spelled

> > correctly) for a year for

> > individual and groups therapy sessions on short term

> > memory, probably some

> > > other things too but then who can remember. Of

> > course too, these symptoms

> > overlap as to when they come and go. I have learned

> > with Lyme if you don't

> > > use it you will loose it so I have always stayed

> > very active in the brain

> > part. I just came off a very bad year, had the fog

> > so bad so not quite

> > > sure what all I did do but now that the fog has

> > " lifted " I really realize

> > how much of the brain workings are troubling me-I

> > can't imagine how bad I

> > > would be had I not continued to keep it active.I

> > do have one advantage, I

> > do or am working on my family genealogy. THAT keeps

> > the brain active to

> > > say the least. I am able to find info on family

> > but I do have problems

> > keeping members straight when filling out family

> > sheets-to be honest I am

> > > putting most of them off hoping since I am

> > improving so much I will get

> > better in the brain part and not really mess them up

> > good like I know I can.

> > >

> > > Just wanted you to know that's the first time I

> > ever heard of someone

> > else's brain feeling like mine did so many years

> > ago. Have you ever had a

> > > depth perception problem?

> > > Coleen

> > >

> > > nne wrote:

> > >

> > > > Sheryl, same thing with me! I have what may be

> > irreversible damage to

> > > > certain parts of my brain. I can not learn new

> > things, its so

> > frustrating

> > > > and I am on anti seizure medication. today I am

> > having one of my jello

> > > > brain days. its like my brain is loose inside my

> > head, if I move my head

> > to

> > > > the left, my brain takes time to come with it.

> > geeze that makes no

> > sense.

> > > > if I told you the rest of my neurological

> > symptoms, I might be put in a

> > > > rubber room! ask your hubby for his patience.

> > > >

> > > > roe

> > > >

> > > > [Non-text portions of this message have been

> > removed]

> > > >

> > > > Welcome to

> > > >

> > > > Easy Reference:

> > > > Send a blank email message to:

> > > >

> > > > -Unsubscribe -

> > Unsubscribe from the list

> > > > -Digest - Switch your

> > subscription to a digest

> > format

> > > > -Normal - Switch your

> > subscription to normal

> > > >

> > > > Please send messages not related to Lyme disease

> > (this includes humor

> > and information about other diseases) to

> > -Offtopic

> > > >

> > > > The archives can be accessed at

> >

> > > >

> > > > The chat room is always open!

> > > > /chat

> > > >

> > > >

[Guest guest]

,

I have never been lock up in a mental word thank goodness. But I understand

the nutso mom think I haven't spoken to mine in years and had to go see a

therapist for a while who says I'm diplacing. Whatever that means.

Get checked then get copies of your test results, show them to her.

Sheryl

Re: [ ] Hello

> Well, my family has had me locked up in mental wards many times since

> I was a teenager, doctors gave a different diagnosis every time.

> Mental wards are no fun, I was chased by scary male patients in the

> middle of the night, one time I had my period and asked for some

> tampons - the nurses just laughed and thought it was some of my

> insanity - a few days later they gave me a cup and demanded a urine

> sample, so I gave them a cup of blood ad urine and pus from an

> infection (sorry if that's too graphic), well the next day at least

> they brought me some tampons. Oh memories. All my life I was never

> allowed to be sick, my mother would get angry at me. Consequently,

> she never listened to or believed I had any real physical symptoms,

> even when I got jaundiced and couldn't stand up for two months. That

> is a major reason why I hadn't gotten a proper diagnosis yet. I

> have done treatments for yeast and for parasites, each time the herbs

> and protocols helped but had no lasting effect when I stopped them.

>

>

>

> >,

> > I have had Lyme for going on two years in and out of " remission " , if

there

> >is a cure for late stage Lyme I would also like to know. I hit the

> >neurological stage at the end of last year, every since I have to take

> >seizure medication and my brain lives in a fog. Yesterday I was such a

> >basket case my husband thought I was going by-polar. Good luck. sheryl

> >

> >

> >> Hi,

> >>

> >> I am new here. I have been sick & miserable for 20 years, now they

> >> seem to think it is Lyme. When I was reading about Lyme on the web

> >> today, it all fits my picture very well, I never knew Lyme could

> >> cause such diverse problems as my frequent baldder infections - also

> >> I had a tick when I was 12, I never took it off because I didn't know

> >> what it was, it was shortly after that I started getting sick. At

> >> the time the Dr. asked ma about my sex life, he seemed to think I had

> >> an STD (at 12!! jeepers) or mono.

> >>

> >> I will find out more in a few months when I get to speak with some

> >doctors.

> >>

> >> So, what is the cure for late stage Lyme?

> >>

> >> Is there a cure that doesn't involve allopathic drugs?

> >>

> >> Thank you,

> >>

> > >

> >>

>

> Welcome to

>

> Easy Reference:

> Send a blank email message to:

>

> -Unsubscribe - Unsubscribe from the list

> -Digest - Switch your subscription to a digest

format

> -Normal - Switch your subscription to normal

>

> Please send messages not related to Lyme disease (this includes humor and

information about other diseases) to -Offtopic

>

> The archives can be accessed at

>

> The chat room is always open!

> /chat

>

>

[Guest guest]

Roe'

I'm not sure what happened but I didn't sent that e-mail.

Sheryl

RE: [ ] Hello

> im sick of people i just went outside to lie down to

> relax and my neigbors said get ajob i said i cant work

> they said yes you can imstarting to hate alot of

> people i lost my freiends from this and my family i

> cant take this stupid remarks.

> --- Sheryl

>

> holly molly Sheryl, where do you live! what idiots. they are just

ignorant

> and don't understand. our disability is invisible and people will judge

us.

> don't take it personally, its just the way some people are. i have SSD and

> LTD, and i would give it up in a minute to have my brain back and a job.

but

> many of my X friends think i am happy to be on disability.

>

> roe

>

>

>

[Guest guest]

Coleen,

Have faith. My faith in the Lord is the main thing that gets me out of the

bed, it sure ain't energy.

Sheryl

Re: [ ] Hello

> >

> > > nne,

> > > My, your symptom of the head with jello inside and the brain moving

> > around. I had this right after a closed head injury, so now hmmmm... I

used

> > to

> > > say my brain had to much juice around it and I really thought I could

feel

> > it. One is not supposed to feel one's own brain, are they. It was before

> > > August of 1985 that I got sick and this strange feeling came on after

the

> > closed head injury in Feb of 1986. I have read that big stressful

> > > happenings can bring on many Lyme symptoms all at once and I have for

the

> > 2 yrs that I have learned I have Lyme wondered because the symptoms I

had

> > > immediately after the head injury were the same as you are having. My

> > seizures though were just a smell thing, I would smell a smouldering

garbage

> > > file, I checked my house and outdoors everytime but the only thing,

> > including medication, to make them go away was to just lay down and quit

> > doing

> > > what I was doing. Weird thing as I could fill a hanky with perfume and

> > still smell this smell through the perfume.

> > > I have found over these 15 undiagnoised years, 17 yrs now that

symptoms

> > stay about 6 months and then most of them leave, only to be replaced by

> > > another one.

> > > I did go to a neurophycoligist(its not spelled correctly) for a year

for

> > individual and groups therapy sessions on short term memory, probably

some

> > > other things too but then who can remember. Of course too, these

symptoms

> > overlap as to when they come and go. I have learned with Lyme if you

don't

> > > use it you will loose it so I have always stayed very active in the

brain

> > part. I just came off a very bad year, had the fog so bad so not quite

> > > sure what all I did do but now that the fog has " lifted " I really

realize

> > how much of the brain workings are troubling me-I can't imagine how bad

I

> > > would be had I not continued to keep it active.I do have one

advantage, I

> > do or am working on my family genealogy. THAT keeps the brain active to

> > > say the least. I am able to find info on family but I do have problems

> > keeping members straight when filling out family sheets-to be honest I

am

> > > putting most of them off hoping since I am improving so much I will

get

> > better in the brain part and not really mess them up good like I know I

can.

> > >

> > > Just wanted you to know that's the first time I ever heard of someone

> > else's brain feeling like mine did so many years ago. Have you ever had

a

> > > depth perception problem?

> > > Coleen

> > >

> > > nne wrote:

> > >

> > > > Sheryl, same thing with me! I have what may be irreversible damage

to

> > > > certain parts of my brain. I can not learn new things, its so

> > frustrating

> > > > and I am on anti seizure medication. today I am having one of my

jello

> > > > brain days. its like my brain is loose inside my head, if I move my

head

> > to

> > > > the left, my brain takes time to come with it. geeze that makes no

> > sense.

> > > > if I told you the rest of my neurological symptoms, I might be put

in a

> > > > rubber room! ask your hubby for his patience.

> > > >

> > > > roe

> > > >

> > > >

[Guest guest]

im going to see a lyme doc on june 18th i hope he can

help me.

--- Sheryl <slmitch1@...> wrote:

> ,

> Your not alone. I don't know what your other

> symptoms are but my disease

> has gone neurological. Don't worry what other idiots

> say or think. Have you

> had a Western Blot done? If not that is the first

> step. Sometimes I think I

> have lost my ever lovin mind, and that my family is

> going to have me locked

> up in a padded room. Find out what is going on

> first. Alos I have learned to

> laugh at my brain fog, and to appologize when I

> loose it toward my family,

> those that understand anyhow. My brother and

> sister-in-law won't come by my

> house or bring my nephews by anymore, because thay

> think I'm contagious. Let

> stupid people that don't want to learn alone you

> don't need that right now

> and consentrate on getting better. Look at me I

> can't spell anymore and I'm

> a journalism major who has worked on several

> newspapers. I can't sweat the

> small stuff right now, I need to get healthy first.

> Sheryl

> Re: [ ] Hello

> > >

> > >

> > > > nne,

> > > > My, your symptom of the head with jello inside

> and

> > > the brain moving

> > > around. I had this right after a closed head

> injury,

> > > so now hmmmm... I used

> > > to

> > > > say my brain had to much juice around it and I

> > > really thought I could feel

> > > it. One is not supposed to feel one's own brain,

> are

> > > they. It was before

> > > > August of 1985 that I got sick and this

> strange

> > > feeling came on after the

> > > closed head injury in Feb of 1986. I have read

> that

> > > big stressful

> > > > happenings can bring on many Lyme symptoms all

> at

> > > once and I have for the

> > > 2 yrs that I have learned I have Lyme wondered

> > > because the symptoms I had

> > > > immediately after the head injury were the

> same as

> > > you are having. My

> > > seizures though were just a smell thing, I would

> > > smell a smouldering garbage

> > > > file, I checked my house and outdoors

> everytime

> > > but the only thing,

> > > including medication, to make them go away was

> to

> > > just lay down and quit

> > > doing

> > > > what I was doing. Weird thing as I could fill

> a

> > > hanky with perfume and

> > > still smell this smell through the perfume.

> > > > I have found over these 15 undiagnoised years,

> 17

> > > yrs now that symptoms

> > > stay about 6 months and then most of them leave,

> > > only to be replaced by

> > > > another one.

> > > > I did go to a neurophycoligist(its not spelled

> > > correctly) for a year for

> > > individual and groups therapy sessions on short

> term

> > > memory, probably some

> > > > other things too but then who can remember. Of

> > > course too, these symptoms

> > > overlap as to when they come and go. I have

> learned

> > > with Lyme if you don't

> > > > use it you will loose it so I have always

> stayed

> > > very active in the brain

> > > part. I just came off a very bad year, had the

> fog

> > > so bad so not quite

> > > > sure what all I did do but now that the fog

> has

> > > " lifted " I really realize

> > > how much of the brain workings are troubling

> me-I

> > > can't imagine how bad I

> > > > would be had I not continued to keep it

> active.I

> > > do have one advantage, I

> > > do or am working on my family genealogy. THAT

> keeps

> > > the brain active to

> > > > say the least. I am able to find info on

> family

> > > but I do have problems

> > > keeping members straight when filling out family

> > > sheets-to be honest I am

> > > > putting most of them off hoping since I am

> > > improving so much I will get

> > > better in the brain part and not really mess

> them up

> > > good like I know I can.

> > > >

> > > > Just wanted you to know that's the first time

> I

> > > ever heard of someone

> > > else's brain feeling like mine did so many years

> > > ago. Have you ever had a

> > > > depth perception problem?

> > > > Coleen

> > > >

> > > > nne wrote:

> > > >

> > > > > Sheryl, same thing with me! I have what may

> be

> > > irreversible damage to

> > > > > certain parts of my brain. I can not learn

> new

> > > things, its so

> > > frustrating

> > > > > and I am on anti seizure medication. today

> I am

> > > having one of my jello

> > > > > brain days. its like my brain is loose

> inside my

> > > head, if I move my head

> > > to

> > > > > the left, my brain takes time to come with

> it.

> > > geeze that makes no

> > > sense.

> > > > > if I told you the rest of my neurological

> > > symptoms, I might be put in a

> > > > > rubber room! ask your hubby for his

> patience.

> > > > >

> > > > > roe

> > > > >

> > > > > [Non-text portions of this message have been

> > > removed]

> > > > >

> > > > > Welcome to

> > > > >

> > > > > Easy Reference:

>

=== message truncated ===

__________________________________________________

[Guest guest]

im going to see a lyme doc on june 18th i hope he can

help me.

--- Sheryl <slmitch1@...> wrote:

> ,

> Your not alone. I don't know what your other

> symptoms are but my disease

> has gone neurological. Don't worry what other idiots

> say or think. Have you

> had a Western Blot done? If not that is the first

> step. Sometimes I think I

> have lost my ever lovin mind, and that my family is

> going to have me locked

> up in a padded room. Find out what is going on

> first. Alos I have learned to

> laugh at my brain fog, and to appologize when I

> loose it toward my family,

> those that understand anyhow. My brother and

> sister-in-law won't come by my

> house or bring my nephews by anymore, because thay

> think I'm contagious. Let

> stupid people that don't want to learn alone you

> don't need that right now

> and consentrate on getting better. Look at me I

> can't spell anymore and I'm

> a journalism major who has worked on several

> newspapers. I can't sweat the

> small stuff right now, I need to get healthy first.

> Sheryl

> Re: [ ] Hello

> > >

> > >

> > > > nne,

> > > > My, your symptom of the head with jello inside

> and

> > > the brain moving

> > > around. I had this right after a closed head

> injury,

> > > so now hmmmm... I used

> > > to

> > > > say my brain had to much juice around it and I

> > > really thought I could feel

> > > it. One is not supposed to feel one's own brain,

> are

> > > they. It was before

> > > > August of 1985 that I got sick and this

> strange

> > > feeling came on after the

> > > closed head injury in Feb of 1986. I have read

> that

> > > big stressful

> > > > happenings can bring on many Lyme symptoms all

> at

> > > once and I have for the

> > > 2 yrs that I have learned I have Lyme wondered

> > > because the symptoms I had

> > > > immediately after the head injury were the

> same as

> > > you are having. My

> > > seizures though were just a smell thing, I would

> > > smell a smouldering garbage

> > > > file, I checked my house and outdoors

> everytime

> > > but the only thing,

> > > including medication, to make them go away was

> to

> > > just lay down and quit

> > > doing

> > > > what I was doing. Weird thing as I could fill

> a

> > > hanky with perfume and

> > > still smell this smell through the perfume.

> > > > I have found over these 15 undiagnoised years,

> 17

> > > yrs now that symptoms

> > > stay about 6 months and then most of them leave,

> > > only to be replaced by

> > > > another one.

> > > > I did go to a neurophycoligist(its not spelled

> > > correctly) for a year for

> > > individual and groups therapy sessions on short

> term

> > > memory, probably some

> > > > other things too but then who can remember. Of

> > > course too, these symptoms

> > > overlap as to when they come and go. I have

> learned

> > > with Lyme if you don't

> > > > use it you will loose it so I have always

> stayed

> > > very active in the brain

> > > part. I just came off a very bad year, had the

> fog

> > > so bad so not quite

> > > > sure what all I did do but now that the fog

> has

> > > " lifted " I really realize

> > > how much of the brain workings are troubling

> me-I

> > > can't imagine how bad I

> > > > would be had I not continued to keep it

> active.I

> > > do have one advantage, I

> > > do or am working on my family genealogy. THAT

> keeps

> > > the brain active to

> > > > say the least. I am able to find info on

> family

> > > but I do have problems

> > > keeping members straight when filling out family

> > > sheets-to be honest I am

> > > > putting most of them off hoping since I am

> > > improving so much I will get

> > > better in the brain part and not really mess

> them up

> > > good like I know I can.

> > > >

> > > > Just wanted you to know that's the first time

> I

> > > ever heard of someone

> > > else's brain feeling like mine did so many years

> > > ago. Have you ever had a

> > > > depth perception problem?

> > > > Coleen

> > > >

> > > > nne wrote:

> > > >

> > > > > Sheryl, same thing with me! I have what may

> be

> > > irreversible damage to

> > > > > certain parts of my brain. I can not learn

> new

> > > things, its so

> > > frustrating

> > > > > and I am on anti seizure medication. today

> I am

> > > having one of my jello

> > > > > brain days. its like my brain is loose

> inside my

> > > head, if I move my head

> > > to

> > > > > the left, my brain takes time to come with

> it.

> > > geeze that makes no

> > > sense.

> > > > > if I told you the rest of my neurological

> > > symptoms, I might be put in a

> > > > > rubber room! ask your hubby for his

> patience.

> > > > >

> > > > > roe

> > > > >

> > > > > [Non-text portions of this message have been

> > > removed]

> > > > >

> > > > > Welcome to

> > > > >

> > > > > Easy Reference:

>

=== message truncated ===

__________________________________________________

[Guest guest]

In a message dated 6/10/2001 11:48:33 AM Eastern Daylight Time,

toil_for_lyme@... writes:

> Only time can help develop a " tougher " skin, but these wounds still

> penetrate, no matter how hard we try or how much we smile through our

> tears. That's why I'm glad we at least have each other. Might not

> replace the others in our lives who ignore us or mistreat us, might

> not be enough, but it's better than nothing. I wish I could offer

> more, wish we were closer together

Dear Rose,

Thank you ever-so-much for your kind words.

I'm 53 now, so when will I develop a thicker skin???

Actually, however, I do believe my skin is figuratively a bit thicker than it

used to be, so there is hope.

And yes, we do have each other, and yes, also I wish we were closer together.

Love & hugs,

a

[Guest guest]

a,

I would guess that after your son has been away from home for awhile,

that your relationship will slowly improve. College is a helpful

maturity booster, and the distance between you will help erase the

daily pressures between you as well.

Have hope and be strong.

Jenni

> In a message dated 6/10/2001 3:47:24 PM Eastern Daylight Time,

> roe325@s... writes:

>

>

> > Anyway, a, your son may have other things on his mind other

than the

> > lamp that made him lash out at you. he may be very worried about

you and not

> > know how to express it. I know this will not be easy with a teen,

but its

> > time to have a talk with him. its not easy having a sick

parent. he may

> > need help with depression also.

> >

> > roe

> >

> >

>

> Dear Roe,

>

> Thanks so much for your kind words & thoughts.

> It has never occurred to me to smack my son.

> I've been battered all my life & abhor violence. It teaches

nothing except

> fear & maybe hatred too.

>

> Roe, my son had Lyme, & I got him treated right away, which he

resented, the

> ungrateful brat!!! But at least the treatment seems to have worked

for him.

> Also, I took him for many years of therapy, but he resented that

too, refuses

> to go anymore. The best thing for him is to get away to go to

college &

> start a new life for himself. I just wish we could have been

closer, as I

> love him so much. But he needs to grow up.

>

> Much love,

> a

>

>

>

[Guest guest]

It kills me that people can't be more understanding ( &

educated!!) People can be so cruel. I don't have any

support from my family--they just can't understand (

or don't want to). I think in my life the only ones

who do understand what 'we' live with, are the ones

living with me!...my boyfriend & our children. As for

'outside' opinions...ignore them...they'll never

understand until they get lyme. You could always hand

them a pamphlet...help to educate them, so next time

they'll be more prepared before they run their mouths!

Kris

--- LymeDizzy@... wrote:

> In a message dated 6/9/2001 6:17:39 PM Eastern

> Daylight Time,

> roe325@... writes:

>

>

> > im sick of people i just went outside to lie down

> to

> > relax and my neigbors said get ajob i said i cant

> work

> > they said yes you can imstarting to hate alot of

> > people i lost my freiends from this and my family

> i

> > cant take this stupid remarks.

> > --- Sheryl

> >

> >

>

> Next time he or she says get a job tell them to get

> a life this way they

> don't have to sit around and live through yours

> *beams sarcasticly*

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

let us know what he says.

sheryl

Re: [ ] Hello

> > > >

> > > >

> > > > > nne,

> > > > > My, your symptom of the head with jello inside

> > and

> > > > the brain moving

> > > > around. I had this right after a closed head

> > injury,

> > > > so now hmmmm... I used

> > > > to

> > > > > say my brain had to much juice around it and I

> > > > really thought I could feel

> > > > it. One is not supposed to feel one's own brain,

> > are

> > > > they. It was before

> > > > > August of 1985 that I got sick and this

> > strange

> > > > feeling came on after the

> > > > closed head injury in Feb of 1986. I have read

> > that

> > > > big stressful

> > > > > happenings can bring on many Lyme symptoms all

> > at

> > > > once and I have for the

> > > > 2 yrs that I have learned I have Lyme wondered

> > > > because the symptoms I had

> > > > > immediately after the head injury were the

> > same as

> > > > you are having. My

> > > > seizures though were just a smell thing, I would

> > > > smell a smouldering garbage

> > > > > file, I checked my house and outdoors

> > everytime

> > > > but the only thing,

> > > > including medication, to make them go away was

> > to

> > > > just lay down and quit

> > > > doing

> > > > > what I was doing. Weird thing as I could fill

> > a

> > > > hanky with perfume and

> > > > still smell this smell through the perfume.

> > > > > I have found over these 15 undiagnoised years,

> > 17

> > > > yrs now that symptoms

> > > > stay about 6 months and then most of them leave,

> > > > only to be replaced by

> > > > > another one.

> > > > > I did go to a neurophycoligist(its not spelled

> > > > correctly) for a year for

> > > > individual and groups therapy sessions on short

> > term

> > > > memory, probably some

> > > > > other things too but then who can remember. Of

> > > > course too, these symptoms

> > > > overlap as to when they come and go. I have

> > learned

> > > > with Lyme if you don't

> > > > > use it you will loose it so I have always

> > stayed

> > > > very active in the brain

> > > > part. I just came off a very bad year, had the

> > fog

> > > > so bad so not quite

> > > > > sure what all I did do but now that the fog

> > has

> > > > " lifted " I really realize

> > > > how much of the brain workings are troubling

> > me-I

> > > > can't imagine how bad I

> > > > > would be had I not continued to keep it

> > active.I

> > > > do have one advantage, I

> > > > do or am working on my family genealogy. THAT

> > keeps

> > > > the brain active to

> > > > > say the least. I am able to find info on

> > family

> > > > but I do have problems

> > > > keeping members straight when filling out family

> > > > sheets-to be honest I am

> > > > > putting most of them off hoping since I am

> > > > improving so much I will get

> > > > better in the brain part and not really mess

> > them up

> > > > good like I know I can.

> > > > >

> > > > > Just wanted you to know that's the first time

> > I

> > > > ever heard of someone

> > > > else's brain feeling like mine did so many years

> > > > ago. Have you ever had a

> > > > > depth perception problem?

> > > > > Coleen

> > > > >

> > > > > nne wrote:

> > > > >

> > > > > > Sheryl, same thing with me! I have what may

> > be

> > > > irreversible damage to

> > > > > > certain parts of my brain. I can not learn

> > new

> > > > things, its so

> > > > frustrating

> > > > > > and I am on anti seizure medication. today

> > I am

> > > > having one of my jello

> > > > > > brain days. its like my brain is loose

> > inside my

> > > > head, if I move my head

> > > > to

> > > > > > the left, my brain takes time to come with

> > it.

> > > > geeze that makes no

> > > > sense.

> > > > > > if I told you the rest of my neurological

> > > > symptoms, I might be put in a

> > > > > > rubber room! ask your hubby for his

> > patience.

> > > > > >

> > > > > > roe

> > > > > >

> > > > > > [Non-text portions of this message have been

> > > > removed]

> > > > > >

> > > > > > Welcome to

> > > > > >

> > > > > > Easy Reference:

> >

> === message truncated ===

>

>

> __________________________________________________

>

[Guest guest]

Kris,

My brother and his wife looked on an old web site when I first got sick.

There comment was that I had more symptoms than what was on that list and it

said Lyme was not common in Tn. Soooo, they think it something else and wont

let my nephews come over to play with my kids, but they don't mind if my

kids go to there house. There will be stupid people in all families. I took

them a book about Lyme and they didn't even read it. That's okay though tere

not as perfect as they think either.

Sheryl

Re: [ ] Hello

> It kills me that people can't be more understanding ( &

> educated!!) People can be so cruel. I don't have any

> support from my family--they just can't understand (

> or don't want to). I think in my life the only ones

> who do understand what 'we' live with, are the ones

> living with me!...my boyfriend & our children. As for

> 'outside' opinions...ignore them...they'll never

> understand until they get lyme. You could always hand

> them a pamphlet...help to educate them, so next time

> they'll be more prepared before they run their mouths!

>

> Kris

>

>

> --- LymeDizzy@... wrote:

> > In a message dated 6/9/2001 6:17:39 PM Eastern

> > Daylight Time,

> > roe325@... writes:

> >

> >

> > > im sick of people i just went outside to lie down

> > to

> > > relax and my neigbors said get ajob i said i cant

> > work

> > > they said yes you can imstarting to hate alot of

> > > people i lost my freiends from this and my family

> > i

> > > cant take this stupid remarks.

> > > --- Sheryl

> > >

> > >

> >

> > Next time he or she says get a job tell them to get

> > a life this way they

> > don't have to sit around and live through yours

> > *beams sarcasticly*

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

In a message dated 6/11/2001 12:29:45 PM Eastern Daylight Time,

sjbeardaolcom@... writes:

> a,

> I would guess that after your son has been away from home for awhile,

> that your relationship will slowly improve. College is a helpful

> maturity booster, and the distance between you will help erase the

> daily pressures between you as well.

> Have hope and be strong.

> Jenni

Dear Jenni,

Thanks for writing.

I think you are right. It has happened many times before & hopefully, will

happen again. Getting away from home is the right thing for my son. He

needs it. Despite everything, I love him so much & will miss him.

Hugs, a

[Guest guest]

--- leesina@... wrote:

>I notice that when I get upset or nervous, I get

dizzy. Kind of like losing my equalibrium. Does this

happen to anyone else? I am always nevous and can

hardly relax. <

Hi . There actually were posts earlier today and

maybe yesterday on anxiety and panic disorders

associated with Candida.

Try going to your page and then to the

search function for archived messages. It works pretty

well.

Yes, many of us have problems in that area. Some

people find that calcium supplements help. A big

recommendation on this list was for coral calcium you

might have to buy on line. It helps me, but I am

heavily drugged most of the time! Still get overly

anxious. Took three showers this morning because I was

sweating so much waiting for a repairman. I bit my

cheek hard enough to draw blood, went out in the

backyard and used an axe to split some wood just to

work off some of the panic.

While I have external factors that drive much of my

anxiety and depression, candida related health

problems are a serious contributor.

Rose

__________________________________________________

[Guest guest]

Hi

My name is diann. I`m new to the group

as well. I have had problems with my nerves

since a near fatal fever of unknown origin I

was 6yrs old. I`ve been on about everything

at one time or another. Recently I started

using a tincture of lobella. I understand that

it is controversial but I am having good results.

I set it out a while to let the alcohol evaporate.

Do you have a problem with certain kinds of sounds causing a sort of

electric unpleasant sensation go thru your chest and arms? If so

the lobella is the first thing I`ve found that helps

and isn`t a controlled highly addictive substance.

Some things to avoid that you probably already know are caffiene,

nicotine, sugars,

antihistamies,alcohol,stimulants,artane and

possibbly wheat. I`ve not made a complete list

if you know of more helpful things please let me know. Do you have a

problem with insomnia?

My heart goes out to you . I `m very well aquainted with bad nerves

it`s a miserable

problem. Blessings, Diann

[Guest guest]

Hello

> >

> >

> > >

> > > Bad news about Dr. Horton. Seems as though now Dr. Crist is the only

> >one

> >to

> > > help us.

> > > _________________________________________________________________

> > > Get your FREE download of MSN Explorer at http://explorer.msn.com

> > >

> > >

> >

> >

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

>

>

[Guest guest]

Hi ,

Welcome! You sure lead a busy life. I bet your daughter is very proud of

you, raising her alone, going to school and being such a success in your

business life. I can't imagine traveling as much as you do. I understand

why you are exhausted all the time. Please tell me what CMV virus is? I

don't believe I have heard of it. My son Tommy was diagnosed with AIH this

past January. He was 11 then. His LFTs were in the mid 300s when he was

diagnosed. They went up and down since December, but are almost normal now.

He was also in the hospital from July until October last year with impacted

kidney stones. Just when we thought that was behind us for a while, he

ended up in the hospital New Year's Eve with a painful lump in the neck

that had been there for several weeks and severe pain in the liver area. He

then underwent the normal AIH testing, many blood tests, upper GI,

endoscopy, colonoscopy, ultrasounds, CT scans and a liver biopsy. He had

the constant itching, fatigue, and dark urine. Anyway, despite all of this,

Tommy ended the school year with a straight A average for the year. He just

wanted to be a normal kid.

Luanne's son Ty just graduated high school and made the honor roll all four

years. He was in the hospital for three or four months this year and

suffers from multiple autoimmune diseases. He will be attending college

this fall and is working at Six Flags full time as a manager. He is

currently being listed for a liver transplant. Sorry Luanne about the

bragging rights. I'm proud of Ty too.

Elyse is a 14 year old girl who also has AIH. She is working as a life

guard this summer. She too leads a " normal " life (I'm very proud of her

too). She can't be bothered worrying about her disease. She lets her mother

April do the worrying for her.

Cheryl is a high school teacher who does a lot of extra curricular work

with the kids and is raising her baby granddaughter. She has AIH and PSC

(did I get that right Cheryl). She has had a very tough year, but is making

her way through it, still being a great teacher and a great Mom and

Grandmother.

There are many others here who lead great lives and have learned to live

with their illnesses. Look back in the archives for Genny and Jodi's story.

Genny just donated part of her liver to her daughter Jodi. Both are doing

great.

Anyway, I guess the point I'm trying to make is that there is life after

AIH. You just adjust. AIH teaches you to enjoy life now and to appreciate

the good things and most importantly to slow down a little and listen to

your body. You have overcome a lot of odds already, this is just the next

one to deal with. I know it is not easy. I was that over achieving person

until SLE knocked me out of the ball game (I was an environmental

engineer). I have good days and bad days. You will too. AIH progresses

differently with different people. Most people respond positively to the

meds. There are side effects, but living with the side effects is better

than the alternative. Get creative about work when you don't feel well. You

say most of it is teamwork. If you have a bad day, can you conference in by

phone or computer while you rest? Get lots of rest on those long plane

rides. Explain your situation to your co workers. You might be surprised at

their show of support for you. Good luck on your dissertation. Sorry if I'm

rambling, I've had a bad health day today and my brain isn't all there.

But, I'm in a great mood!

Debbie (Tommy's Mom)

> [Original Message]

> From: <susanmarysmith@...>

> < >

> Date: 6/27/01 8:09:13 PM

> Subject: [ ] Hello

>

> Hello:

>

> My name is , I live in Connecticut, I am in my fourties, and I

> live a stressed life as a software engineer/consultant. Last

> November I began feeling extremely fatigued and weak. I wasn't too

> concerned because I was working on an international project for

> 9 months and I made at least 20 trips to Europe and 5 trips to Asia.

>

> I became so used to jet lag and multiple time zones that I just

> expected to be tired. In January I saw the doctor because I had

> severe itching /rash and I requested blood tests because I was so

> fatigued. After 5 visits and 6 blood tests they told me I had the

> CMV

> virus and that it was self healing and I should rest more, eat

> better, etc. The liver function tests were elevated, but they

> thought this was due to the CMV. Four months later, I still felt so

> tired so I had more test which indicated the same elevated LFT's.

> The doc referred me (finally) to a gastroenterologist and a

> hematologist. More blood-work now shows GGT (GGTP) levels very

> elevated (285 - normal is 0-55), and the hematolgists said this

> is certainly indicative of autoimmune disease (AIH/PBC). I return

> to

> the GI on Thursday.........we'll see what is next.

>

> My questions:

> 1. Is there anyone who had the CMV virus, followed by a diagnosis of

> AIH and/or PBC?

> 2. What do people do about work ---- I am not well, but I am really

> not sick either. I could work a normal schedule, but my problem is

> that my job always tends to require 12-15 hour days of Teamwork -- I

> end up sleeping all weekend, sometimes for 14-18 hours at a stretch.

>

> In consulting for a major Fortune 500 company, it is kind of all or

> none. How do people handle working?

> 3. How do high energy over-achievers begin to accept their

> limitations?

> 4 What kind of questions should I ask the doctors?

> 5. I admit my vanity and am petrified about weight gain. Any advice

> if on prednisone?

>

> I have raised a 21 year old child by myself and I managed to juggle

> my full time job and full time school over the last four years-- I

> earned my Masters degree in 1998 and have completed 2 years of

> course

> work for my Ph.D. All I need is the dissertation, but I can't find

> the energy to work on this for six months. I cannot stand being

> physically limited.

>

> Thanks..................

>

>

> __________________________________________________

>

[Guest guest]

Hi Bev, I was wondering if you have read the book called " How to prevent

Breast Cancer " by Harvey Diamond? It will help you. You can check it out

at his website. Also look into the Natural Hygiene sites. Best of Luck to

you, Annee

>From: bmmkievit@...

>Reply-

>

>Subject: [ ] hello

>Date: Tue, 10 Jul 2001 19:41:59 EDT

>

>My name is Bev. I'm new to the group. I'm on my way to curing my cancer. I

>was diagnosed with breast cancer in May. I am currently receiving

>treatments

>at a clinic in Arizona. It's a naturopathic clinic that treats the immune

>system. I would love to not have surgery but I may need to do so along with

>this treatment. I would like to not have my Lymph nodes removed but haven't

>found a surgeon that will do that. If there is anyone out

>there

>that would have any information to share, I welcome it. I am scheduled to

>see

>a surgeon on July 12.

> I look forward to sharing my successes with everyone.

> Bev

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Hello Bev,

I was originally diagnosed with breast cancer in 1990

and a mastectomy along with chemo and radiation.

I had been cancer free for 11 years until just

recently when a recurrence of some malignant breast

cancer cells broke off and invaded my pleural (lung

cavity.)

i started taking the following supplements a few weeks

ago and my tumor markers have already decreased by

over 50%

Transfer Factor Plus - for stimulation of immune

system and natural killer cells

EFA's- essential fatty acids Omega 3 and flaxseed oil

Grapeseed extract - for antioxidant protection.

Tocotrienol- a form of vitamin E from palm oil that

binds to estrogen receptors to help prevent cancer

from

forming.

Pamela

__________________________________________________

[Guest guest]

Dear , Welcome to the group. It sounds like that you have had a

long tough road with your little one. You will get lots of support here and

information. I have been here for two years now. n is now 12 with

systemic JRA. Keep questioning the doctors, and if you are uncomfortable

with something let them know. Usually, but not always the doctors tend to

prescribe methotrexate as the first DMARD. (disease modifying anti

rheumatoid drug). Though n is not on it, she is on plaquenil. There

are side effects to all drugs, but as you will read, most children tend to

tolerate these medications with little or no side effects. If your child

has side effects, let your doctor know your concerns to see if a change is

in order. The beginning of the disease seems to be the worst until the

right cocktail is found for your child.

As a single mom it would be so much harder to deal with this disease. You

may want to contact your local Arthritis chapter to see if there is a parent

support group in your area. I have found talking to other parents very

helpful. God bless. , Mom to n-age 12 systemic JRA.

>From: carneyval@...

>Reply-

>< >

>Subject: Hello

>Date: Fri, 17 Aug 2001 10:57:26 EDT

>

>Hello! I am new to the group, my name is and my son was

>diagnosed with Systemic JRA about a month ago. I think i am still in a

>daze, and a little bit in denial, even though when the possibility was

>first mentioned I began reading everything that I could get my hands on and

>was pretty sure of the diagnosis before the Doctors agreed. He was

>hospitilized twice before all was evaluated. He is on a total of 27 mg of

>Prednilosone daily (spaced out in three doses) - which he has been on for

>about a month. He was previously on decreasing doses of Prednilosone every

>other day for nephrotic syndrome associated with Minimal Change Disease

>which he was diagnosed with May 2000 (in the hospital on Mother's Day). He

>had been hospitilized twice since then for nephrotic syndrome with a total

>of three relapses of the nephrotic syndrome before the JRA symptoms

>materilized - He had a relapse of the nephrotic syndrome, brought on by JRA

>(or the virus as they were then calling !

>it)- so was taking the Prednilos

>one - and the systemic symptoms disapeared after the med was started, and

>reappeared as we began to taper the Prednilosone as indicated by his

>nephrotic symptoms. I am not sure if the two are connected - it seems they

>may be, though his Nephrologist maintains they are separate. She noted

>that the good thing is that since he will be on the high dose Prednilosone

>for so long that will prevent a relapse of the nephrotic syndrome. (am i

>supposed to cheer now?) (I usually call him Robbie and here lately

>Rob) will be four in October. He was a 28 week Preemie who spent the first

>eight weeks of his life in the NICU. He had surgery at five months

>(relatively minor - if that is possible at five months - he was so small

>the docs were concerned about anesthesia). Rob weighed 2 lbs 7 oz at birth

>and was still under 11 pounds at ten months. Still small for his age, he

>has been growing steadily, so this has me concerned about how it will

>affect his growth, as I was already con!

>cerned about the Prednilosone's

>affect prior to the JRA. Though at this point I guess the growth issue is

>only one of my many concerns. After I found this group and began reading -

>the tears finally came - so I got some of that out of my system and I

>appreciate all that all of you do to help out each other - and now me. It

>is really hard, on Rob's bad days to look at him when he tells me in his

>very grown up matter-of-fact voice, " Mom, the pain won't go away. " Not a

>question - a statement of acceptance. I tell him he will have good days

>and bad days, and that the Doctors will find the right way to help him. He

>told me last night that he wasn't going to be sick any more - that he

>didn't like going to the doctor. Last week, when we were at the hospital

>for labwork, we stopped by the cafeteria for lunch (yum! Rob's idea, not

>mine) and went to get him an ice cream bar for desert, on the way back to

>the table he said " Mom, I want to take it to my room upstairs & watch tv "

>He's spent so much time as an in!

>patient recently that he assumed

> we were staying.

>Rob's JRA symptoms started with a slight limp - he said that he was pushed

>off a bike at school (daycare) - but the next day at school he told them

>that he fell off a scooter at the store the night before (we hadn't been

>anywhere and there was no scooter) I assumed that he had hurt himself -

>but just didn't remember what happened. The next day the limp was severe

>and he was in a lot of pain - a trip to the doc and multiple xrays and no

>anwers - and was given motrin. The next night he cried and then screamed

>in his sleep (not waking right away) about the pain in his arms and

>shoulder and wanted band-aids on his elbos. His temp was 104.5. I gave

>him Motrin and held him until morning and went to his regular doctor. That

>morning he held his arms close to his body, walked like an old man and

>would hold my hand when crossing the street - because it hurt too much for

>me to touch his hand. The did labs, sent us home saying it was probably

>viral. His temp was back up when we go!

>t home, then the doc called, sai

>d his labs didn't look good, and had me bring him to the hosp for admission

>and more tests. The second admission he was even sicker, high fevers,

>rashes that came and went, pain - his liver and spleen were enlarged (He

>wouldn't walk many days) He wanted me to pick him up, wrapping him in a

>blanket first so I wouldn't hurt him as much when touching him (The blanket

>was his idea - he's a pretty smart kid). I am a divorced, working mom so I

>am exhausted and know I need to keep it together so I can care for him.

>They started him on cyclosporine earlier this week - and I am not at all

>happy with the side affects I am reading associated with this one -

>particularly long term.

>

>Well, I tend to ramble even on good days - and this has turned into a much

>longer email that I anticipated. I apologized for my lack of brevity, and

>thank you in advance for listening, for being there.

>

>Thanks.

>

>Rob's mom

>

>To manage your subscription settings, please visit:

>

>

>For links to websites about JRA:

>http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

Welcome !

I, too, am very new to all of this (daughter, Halie(6) Dx'd 2wks ago)

so I don't, yet, have a whole lot of advice to give. What I can tell

you is that you have found a terrific place to come for

understanding, comfort, and as much advice as you could ever wish

for. Everyone here is so dedicated to sharing their stories and

holding your hand through the rough spots (sounds like you & Robbie

have had your share!). I find myself asking questions here before

even talking to our Rheumy as I know I will receive a variety of

opinions and suggestions that no one else can offer. These people

have made accepting this disease a much easier task than I had

thought when my child was first diagnosed. Hang in there, ask

questions, and know that you are not alone in this. Big hugs to both

of you!

God Bless,

- mom to Halie, 6, Poly

> Hello! I am new to the group, my name is and my son

was diagnosed with Systemic JRA about a month ago. I think i am

still in a daze, and a little bit in denial, even though when the

possibility was first mentioned I began reading everything that I

could get my hands on and was pretty sure of the diagnosis before the

Doctors agreed. He was hospitilized twice before all was evaluated.

He is on a total of 27 mg of Prednilosone daily (spaced out in three

doses) - which he has been on for about a month. He was previously

on decreasing doses of Prednilosone every other day for nephrotic

syndrome associated with Minimal Change Disease which he was

diagnosed with May 2000 (in the hospital on Mother's Day). He had

been hospitilized twice since then for nephrotic syndrome with a

total of three relapses of the nephrotic syndrome before the JRA

symptoms materilized - He had a relapse of the nephrotic syndrome,

brought on by JRA (or the virus as they were then calling !

> it)- so was taking the Prednilos

> one - and the systemic symptoms disapeared after the med was

started, and reappeared as we began to taper the Prednilosone as

indicated by his nephrotic symptoms. I am not sure if the two are

connected - it seems they may be, though his Nephrologist maintains

they are separate. She noted that the good thing is that since he

will be on the high dose Prednilosone for so long that will prevent a

relapse of the nephrotic syndrome. (am i supposed to cheer now?)

(I usually call him Robbie and here lately Rob) will be four

in October. He was a 28 week Preemie who spent the first eight weeks

of his life in the NICU. He had surgery at five months (relatively

minor - if that is possible at five months - he was so small the docs

were concerned about anesthesia). Rob weighed 2 lbs 7 oz at birth

and was still under 11 pounds at ten months. Still small for his

age, he has been growing steadily, so this has me concerned about how

it will affect his growth, as I was already con!

> cerned about the Prednilosone's

> affect prior to the JRA. Though at this point I guess the growth

issue is only one of my many concerns. After I found this group and

began reading - the tears finally came - so I got some of that out of

my system and I appreciate all that all of you do to help out each

other - and now me. It is really hard, on Rob's bad days to look at

him when he tells me in his very grown up matter-of-fact voice, " Mom,

the pain won't go away. " Not a question - a statement of

acceptance. I tell him he will have good days and bad days, and that

the Doctors will find the right way to help him. He told me last

night that he wasn't going to be sick any more - that he didn't like

going to the doctor. Last week, when we were at the hospital for

labwork, we stopped by the cafeteria for lunch (yum! Rob's idea, not

mine) and went to get him an ice cream bar for desert, on the way

back to the table he said " Mom, I want to take it to my room upstairs

& watch tv " He's spent so much time as an in!

> patient recently that he assumed

> we were staying.

> Rob's JRA symptoms started with a slight limp - he said that he was

pushed off a bike at school (daycare) - but the next day at school he

told them that he fell off a scooter at the store the night before

(we hadn't been anywhere and there was no scooter) I assumed that he

had hurt himself - but just didn't remember what happened. The next

day the limp was severe and he was in a lot of pain - a trip to the

doc and multiple xrays and no anwers - and was given motrin. The

next night he cried and then screamed in his sleep (not waking right

away) about the pain in his arms and shoulder and wanted band-aids on

his elbos. His temp was 104.5. I gave him Motrin and held him until

morning and went to his regular doctor. That morning he held his

arms close to his body, walked like an old man and would hold my hand

when crossing the street - because it hurt too much for me to touch

his hand. The did labs, sent us home saying it was probably viral.

His temp was back up when we go!

> t home, then the doc called, sai

> d his labs didn't look good, and had me bring him to the hosp for

admission and more tests. The second admission he was even sicker,

high fevers, rashes that came and went, pain - his liver and spleen

were enlarged (He wouldn't walk many days) He wanted me to pick him

up, wrapping him in a blanket first so I wouldn't hurt him as much

when touching him (The blanket was his idea - he's a pretty smart

kid). I am a divorced, working mom so I am exhausted and know I need

to keep it together so I can care for him. They started him on

cyclosporine earlier this week - and I am not at all happy with the

side affects I am reading associated with this one - particularly

long term.

>

> Well, I tend to ramble even on good days - and this has turned into

a much longer email that I anticipated. I apologized for my lack of

brevity, and thank you in advance for listening, for being there.

>

> Thanks.

>

> Rob's mom