I'm Back

[Guest guest]

Glad it all worked out ok. Sounds like fun. I know I

have had to accept a rather severe physical exertion

limitation as well. I have already told my brother

not to count on me for deer hunting this year. We hunt

on public land out in swamp country and it is

physically exhausting even in a good year. It was a

tough decision to make, I look forward to my deer

hunting each year. -dz-

--- Dennis <dhuber@...> wrote:

> Hello All,

>

> I'm back. Camping was nice and quiet.

> Saturday I hiked almost to the top of Mt Monadnock

> with my sister and it was hard - all up and steep

> plus it rained the night before and the rocks were

> slippery. There was a strong COOL wind above tree

> line and I started feeling somewhat nauseous near

> the top so I decided it wasn't worth it to get to

> the summit and be sick. So we decided that was ok

> and turned around. Just before we descended the

> clouds cleared and we got to see the spectacular

> view below. I'm not too tired from the ordeal now

> but the leg muscles are pretty lame. I'm glad I

> called it when I did - normally my macho me would

> have told me to do the whole thing. I learned a

> good lesson - that it is much more worthwhile hiking

> on easy going and appreciating nature and the hike

> rather than doing a hard assent for the challenge.

> The weather is beautiful now that it has cooled off.

>

> Enjoy the weekend,

> Dennis

>

__________________________________________________

[Guest guest]

a,

Glad to see you back.... I think I know what you're talking about..

When I was first very ill in 1994 this used to happen to me in the morning or

anytime I slept when I was first on IVS.. Doesn't sound like anxiety to me..I

have panic disorder too and what you describe is not an attack.. What meds

are you on right now... A few things to think about... Could it be you are

having a herx and the herx is just too overwhelming for your body? Could it

be the dosage of meds is too high and needs to be adjusted?....it sounds

something like that or is it possible you're having trouble with your

hormones and or adrenal glands? Something is making you weak and making your

heart race from a sleeping position to an awake standing position and it's

not anxiety......Let us know what happens

[Guest guest]

In a message dated 9/25/01 9:49:50 AM Eastern Daylight Time,

LymeDizzy@... writes:

> Something is making you weak and making your

> heart race from a sleeping position to an awake standing position and it's

>

My heart races even if I stay laying down. My breathing becomes completely

erratic and uncontrollable. I become confused - really out of it. My meds are

Flagyl 500 mg. 3 x a day and Rocephin IV 2 grams a day.

a

_________________________________________________________________

" Do me a favor, doc, tell me something good. " - Blair -

~~ The Exorcist ~~

[Guest guest]

In a message dated 9/25/01 10:08:33 AM Eastern Daylight Time,

StarDantzer@... writes:

> Flagyl 500 mg. 3 x a day and Rocephin IV 2 grams a day.

>

It's very possible it's the meds.. Flagyl is EXTREMELY strong an can also be

toxic...and Rocephin is strong.. You may want to talk to the doctor about

adjusting the dose...

[Guest guest]

In a message dated 9/25/01 12:20:18 PM Eastern Daylight Time,

AtTheLake@... writes:

>

>

>

>

>

> Have you been checked for diabetes?

>

> Rita

>

Rita,

I am wondering about diabetes. I have been told on several occasions that my

blood sugar is low not high What is the actual test for diabetes?During one

of my most recent episodes my boyfriend checked my blood sugar and it was

112. I think this is a normal reading. Do my symptoms sound like something

caused by blood sugar problems to you?

a

_________________________________________________________________

" Do me a favor, doc, tell me something good. " - Blair -

~~ The Exorcist ~~

[Guest guest]

Have you been checked for diabetes?

Rita

atthelake@...

[Guest guest]

**** a-

BEEN THERE, DONE IT!!!!

I had EXACTLY what you describe and my husband (before he was dxd) used to

have these episodes and over time they grew increasingly scary. This is how

we would describe what was happening to him to MANY specialists.....

He would get " buggy eyes " , then bad headache, radiating jaw pain, pain would

go to his chest, heart would BEAT 200 BEATS OUT OF HIS CHEST just sitting,

breathing shallow and he thought he was dying. It grew so bad that he would

end up cyanotic, rushed to ER. He was totally wiped out after one of these

attacks and could barely move.

BABESIA/lyme is the culprit here. You should find that over a LONG duration

of time of abx, these episodes will improve and eventually disappear.

Since this time (1996-1998), I have had MANY write to me of the same episode.

After I hear the same story over and over,,,,,,,I attribute it to lyme.

YES< it could be other things but....

sue in nj

[Guest guest]

In a message dated 9/25/2001 9:22:09 AM Eastern Daylight Time,

StarDantzer@... writes:

> If I try to walk it

> seems as though I must really concentrate to be able to do it. I

> become extremely confused, disoriented and unable to move. Then my

> heart begins to race and my breathing becomes extremely shallow and

> very, very, very fast. I try to control it but it seems like I am

> not in control of anything in my body.After a few minutes of this I

> will begin to feel 'it' pass. My breathing becomes more normal and my

> heart rate slows. I am once again able to speak and I have a huge

> headache for the rest of the night.

Dear a,

Here is something else to consider:

My then 17 yr old son , who has/had Lyme, suddenly complained to me that

he could not see out of the right eye at all, that everything went black. He

was afraid that he was going blind. It would be sudden, but would disappear

gradually after about 15-20 minutes or so.

It happened several times.

I rushed him to an ophthalmologist, scared half to death, and thinking that

he was going blind from Lyme.

In 's case, no happier answer could have been found.

Upon questioning, the doctor asked what happened when his sight returned, &

he said he always got a horrendous headache.

As it turned out, was losing not the vision in his right eye, but his

vision in the right half of both eyes.

All this was was the AURA before a migraine.

Now, whenever this happens, takes an Aleve or an Advil, and he knows

his sight will return shortly, plus the big bonus is that he is able to avoid

the headache completely.

What a lovely ending in our case, so, a, please consider migraine/

migraine aura. I hope your ending is as wonderful as ours.

Hugs,

a Aida, NJ

[Guest guest]

In a message dated 09/25/2001 9:22:36 AM Eastern Daylight Time,

StarDantzer@... writes:

> Does anyone have any ideas on this? I am almost afraid to go to

> sleep now which is a real shame as sleeping was my one respite from

> all this misery.a

>

{{{a}}}} Welcome back, so sorry to hear about the sleeping problems,

just what you need

G Jody G

O May you have enough happiness to make you sweet,

enough trials to make you strong,

enough sorrow to keep you human,

enough hope to make you happy. O

' <A HREF= " http://hometown.aol.com/tarabencaitysmom/index.html " >Jeff & Jody's

Family</A> '

[Guest guest]

In a message dated 09/25/2001 12:37:25 PM Eastern Daylight Time,

StarDantzer@... writes:

> What is the actual test for diabetes?During one

> of my most recent episodes my boyfriend checked my blood sugar and it was

> 112. I think this is a normal reading. Do my symptoms sound like something

> caused by blood sugar problems to you?

>

112 sounds normal to me...my dh is diabetic and around the 120 range is n

ormal

G Jody G

O May you have enough happiness to make you sweet,

enough trials to make you strong,

enough sorrow to keep you human,

enough hope to make you happy. O

' <A HREF= " http://hometown.aol.com/tarabencaitysmom/index.html " >Jeff & Jody's

Family</A> '

[Guest guest]

It did sound a little like diabetes but 112 is normal. A glucose tolerence

test checks for diabetes. The patient drinks what used to be a cola tasting

beverage and gives blood and urine over a certain length of time. When I was

having them you could have the 1,2,3,4, or 5 hours test. That was years ago

and things may have changed.

Rita

[Guest guest]

I experience these same symptoms when exposed to pesticides. They are

spraying heavily for mosquitoes in my area and many of my immediate

neighbors spray the grass for grubs. A large glass of milk (2 cups) has

tryptophan which helps block the excess neurotransmission plus give

calcium and potassium so your heart keeps beating. The bug sprays work

by giving the bug a fatal seizure. Yeast infection makes you more

sensitive to chemicals, and especially pesticides. Hope this helps.

Louise in NJ

[Guest guest]

a, do you have any way to test your bloodsugars at that time?

This is the way a person feels when their bloodsugar is extremely

low. are you on Doxycycline? I will be awakened by my dropping

bloodsugars too. Drink O.J. or applejuice when this happens and see

if it helps you. Lovey

-- In @y..., StarDantzer@a... wrote:

> Hi group,

> I have been very sick since my last posting and none of the

doctors

> can figure it out. I have these episodes that come on out of the

> blue. I will decribe what happens and then hopefully someone might

> recognize it as something. Usually it begins in the night while i

am

> asleep or napping during the day. I awake feeling very strange and

> shaky. It almost feels like the shakiness is inside. I usually get

up

> and awaken my boyfriend because I feel so bad though I have a very

> hard time explaining how - besides the shakiness. If I try to walk

it

> seems as though I must really concentrate to be able to do it. I

> become extremely confused, disoriented and unable to move. Then my

> heart begins to race and my breathing becomes extremely shallow and

> very, very, very fast. I try to control it but it seems like I am

> not in control of anything in my body.After a few minutes of this I

> will begin to feel 'it' pass. My breathing becomes more normal and

my

> heart rate slows. I am once again able to speak and I have a huge

> headache for the rest of the night. The next day finds me wiped out

> and weak and miserable. I hvto go for many tests to see what is

> happening. So far the only answer I get is panic attacks and I KNOW

> this is not a panic attack. I have had anxiety in the past and this

> is nOTHING like it.I have a very hard time describing how I feel

and

> this frustrates me. I think the problem is that I am so disoriented

> at the time that i cannot really describe it after. The last time

it

> happened my daughter who is 14 years old found me and called for

> help. Does anyone have any ideas on this? I am almost afraid to go

to

> sleep now which is a real shame as sleeping was my one respite from

> all this misery.a

[Guest guest]

In a message dated 09/27/2001 2:31:38 AM Eastern Daylight Time,

Loveyonlyme@... writes:

>

> a, do you have any way to test your bloodsugars at that time?

> This is the way a person feels when their bloodsugar is extremely

> low. are you on Doxycycline? I will be awakened by my dropping

> bloodsugars too. Drink O.J. or applejuice when this happens and see

> if it helps you. Lovey

>

That's what they say to do with my dh too, a large glass of oj and if it's

real low, add a spoonful (or two )into the oj

G Jody G

O May you have enough happiness to make you sweet,

enough trials to make you strong,

enough sorrow to keep you human,

enough hope to make you happy. O

' <A HREF= " http://hometown.aol.com/tarabencaitysmom/index.html " >Jeff & Jody's

Family</A> '

[Guest guest]

Oh Jeanette...so sorry! The ignorance is sometimes horrific, isn't it? Glad you are home!

debby

[ ] I'm Back

Hi Everyone I am home again from the hospital after being tube fed for a week which was quite awful but I can forget about it now. They have found out when I had my stroke the left hand side of my throat has been affected and the peristalsis has slowed down a lot so I cant swallow very well at the moment.

Welcome to all the new people that have managed to find the group ask anything or just vent we may not always no the answers but we will try and we will always listen to you.

I think I had better introduce myself to anyone who may be interested. My name is Jeanette 51 years old and live in UK, I have AIH dx1998 and the first stages of Cirrhosis dx 2001 and in November I had a large stroke so am now in a wheelchair which I hate But one day I will get out of it. I take Prednisolone 7.5 mg and that dose keeps the AIH under control any lower and it comes back with a vengence at the moment my bloods are OK for me.

Just let me tell you what happened the last week I was in a ward that didn't no me or anything about AIH one day I was being taken to the bathroom when I got called back there was a lot of discusion on wether I could use the same bathroom and toilets as anyone else and if I should be in a room on my own incase anyone caught anything from me. After finding this out as you can imagine I was very upset and told them I was in more of a risk getting anything from them than they were and my liver specialist was called up and soon put them right. I will go now as I am rambling again but it's so nice to be back have missed you all.

Hugs Jeanette UK AIH 1998 cirrhosis 2001 PS where is Bert she is missed

[Guest guest]

Glad you are out of the hospital. I know I don't like telling people that I have hepatitis. I do the same thing, by telling people that my immune systems is attacking my liver. Bert has not been feeling to well. She's still waiting to have the biopsy. She's been weaning off of the prednisone and her pain has come back. Hopefully, she'll know something next week. Ann CT [ ] I'm Back Hi Everyone I am home again from the hospital after being tube fed for a week which was quite awful but I can forget about it now. They have found out when I had my stroke the left hand side of my throat has been affected and the peristalsis has slowed down a lot so I cant swallow very well at the moment. Welcome to all the new people that have managed to find the group ask anything or just vent we may not always no the answers but we will try and we will always listen to you. I think I had better introduce myself to anyone who may be interested. My name is Jeanette 51 years old and live in UK, I have AIH dx1998 and the first stages of Cirrhosis dx 2001 and in November I had a large stroke so am now in a wheelchair which I hate But one day I will get out of it. I take Prednisolone 7.5 mg and that dose keeps the AIH under control any lower and it comes back with a vengence at the moment my bloods are OK for me. Just let me tell you what happened the last week I was in a ward that didn't no me or anything about AIH one day I was being taken to the bathroom when I got called back there was a lot of discusion on wether I could use the same bathroom and toilets as anyone else and if I should be in a room on my own incase anyone caught anything from me. After finding this out as you can imagine I was very upset and told them I was in more of a risk getting anything from them than they were and my liver specialist was called up and soon put them right. I will go now as I am rambling again but it's so nice to be back have missed you all. Hugs Jeanette UK AIH 1998 cirrhosis 2001 PS where is Bert she is missed

[Guest guest]

Jeanette,

UI always admire your spirirt, You are right hepatitis = contagious and

cissosis=alcoholic. To the uninformed be are in real trouble!

Patty

[ ] Re: I'm Back

>

> Hi Everyone I am home again from the hospital after being tube fed

for a week which was quite awful but I can forget about it now. They

have found out when I had my stroke the left hand side of my throat

has been affected and the peristalsis has slowed down a lot so I cant

swallow very well at the moment.

>

> Welcome to all the new people that have managed to find the group

ask anything or just vent we may not always no the answers but we

will try and we will always listen to you.

>

> I think I had better introduce myself to anyone who may be

interested. My name is Jeanette 51 years old and live in UK, I have

AIH dx1998 and the first stages of Cirrhosis dx 2001 and in November

I had a large stroke so am now in a wheelchair which I hate But one

day I will get out of it. I take Prednisolone 7.5 mg and that dose

keeps the AIH under control any lower and it comes back with a

vengence at the moment my bloods are OK for me.

Dear Jeanette--I was finding the same thing and as time passes(dx

2/98) it is really starting to amuse/annoy me. At first I tried

to " educate " people about autoimmune diseases, but now have given

up. I never use the word " hepatitis " with people that I don't know.

I just say autoimmune liver problems. Most assume that I was or am

an alcoholic, but that's better than being thought contagious.

My " evil " side often thinks in the line for the " loo " as you probably

call it, I should say what I have, loudly, and see how fast the line

dissolves!!!! LOL Jean

>

> Just let me tell you what happened the last week I was in a ward

that didn't no me or anything about AIH one day I was being taken to

the bathroom when I got called back there was a lot of discusion on

wether I could use the same bathroom and toilets as anyone else and

if I should be in a room on my own incase anyone caught anything from

me. After finding this out as you can imagine I was very upset and

told them I was in more of a risk getting anything from them than

they were and my liver specialist was called up and soon put them

right. I will go now as I am rambling again but it's so nice to be

back have missed you all.

>

> Hugs Jeanette UK AIH 1998 cirrhosis 2001 PS where is

Bert she is missed

>

>

>

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

>

[Guest guest]

Nick that is crazy. I dont believe that this Doc told you to wait 2 weeks and

see if PT and meds work..HELLO DOC......I mean really if it was going to work

it would have by now..Its prolonging you getting better making you wait 2

more weeks..then another 3 or 4 to schedule you surgery..Gee hope I dont

sound angry..LOL

I guess if need be I can go there with Joe and we can round up the rest of

the gang, cindy, angela, connie and go there and let the Doc have it. He wont

know what hit him when he sees us all coming...

Well hang in there and feel better...

[Guest guest]

Nick -

I'd be happy to ship myself up there and slap the shit out of

this joker for you. (Notice I'm not putting a smiley here.)

Was all of this what the PT told you. I was trying to see

where the PT stopped talking and the Neuro started. I

say tell them to quit F'ing around and help you now. You

have a life to live and a country to serve. And I for one

am grateful for you and all like you. IMHO, if W. gave

me a kevlar vest, a high-powered firearm, and a trip

to Baghdad, I'd go over there and shoot SH myself.

joe

[Guest guest]

Hi Joe,

I appreciate your comments. I'll play the game because if I don't

and God forbid something does get worse they can deny me disability

because I didn't do as they told me. I know it stinks. Thanks for

the open ear.

-Nick

> Nick -

>

> I'd be happy to ship myself up there and slap the shit out of

> this joker for you. (Notice I'm not putting a smiley here.)

>

> Was all of this what the PT told you. I was trying to see

> where the PT stopped talking and the Neuro started. I

> say tell them to quit F'ing around and help you now. You

> have a life to live and a country to serve. And I for one

> am grateful for you and all like you. IMHO, if W. gave

> me a kevlar vest, a high-powered firearm, and a trip

> to Baghdad, I'd go over there and shoot SH myself.

>

> joe

[Guest guest]

Connie Welcome Back!!!!

[Guest guest]

WELCOME BACK CONNIE

I'm Back

Sorry I meant to post sooner but when I deleted my acct here, I went

to try and fix my acct and messed up my username. I think I

have it fixed now

This all started with a post that was supposed to be a private email

that was not to me...so anyone that responded should not be critized

for saying what they felt after reading it. It may have been a

personal email but once it was posted here it got responses, it was

bound to.

Thanks to all of you that emailed saying you don't have a problem

with my posts at all and wanting me to come back, I'm glad you've

found my posts helpful to you. For those who don't care to read them,

I hope they aren't missing something that could help them. I can't

sit for long myself, 5min tops but the info I get here and helping

others makes me always want to give the best info I can, and if

happens to be long, sorry... blame my English professor for always

wanting out writing lengthened and very detailed LOL

Again thanks Joe, , , and the others who have emailed

me privately asking me to come back, it meant a lot! And you're

right, why leave b/c of just what one person said, they have their

opinion as I do. For those confused, the post from that other person

was deleted by them if you got confused about why only a post from me

saying I was leaving... I tried deleting my post about leaving but

can't since I did quit the group and came back, oh well I don't have

anything to hide, I left and am back, end of story

I didn't want anyone to take any sides, there weren't any sides to

take. It was one person that has a problem with my long emails and

what I say personally that bothers them. I'm a straight forward

person who has nothing to hide. I'm not ashamed at my income or

listing it, it's something that others have found helpful when

wondering how they are going to be able to survive. Tho disability

income varies depending on " credits " mainly, I thought I'd share how

I barely get by and couldn't without child support. If that can help

someone plan ahead or help in any way at all, I don't have a problem

sharing it. I don't share my credit card numbers, home address, last

name, phone number, etc that makes me worry in any way that someone

could abuse the info and make me scared of what I say. I have learned

over time that life is short and I'll help someone in any way I

can and also it's too short to waste time worrying about what others

say or think about me. I did make a statement that I don't talk about

others behind their backs... I should have finished that by saying I

don't if it's bad b/c its a waste of my breath and the person that

I'm telling doesn't need their time wasted by it. If I can't tell

someone up front how I feel then I don't say anything, just me and

how I am.

Thanks for taking the time to read this and I hope all of us can get

answers and help to our particular pains. I can't and won't say that

my posts will not be long b/c if I can help someone, I'll type all

info I can to do that. I have forgotten in the past to type a

particular persons name on the post and it runs off another post, but

it happens to all of us. That doesn't mean that post is only for

them, its for anyone who may need help in that particular situation.

Thanks again everyone who has emailed me and asking me to come back,

I really didn't expect a response like that, then again I didn't

expect I'd leave the group... thanks to those of you who understand

why I post how I do and don't mind, even appreciate the info, no

matter what the length or content of it if it helps someone. It means

a lot to me, thank you.

Connie

[Guest guest]

> Hi to all,

>

> Last week I went to no email status. I found that for the life of

> me, I couldn't keep up with all the posts. My mailbox was always

> over the limit, so I thought I would give the mailbox a break and

> just go to the site to read the posts. Well forget that, it was

> harder for me to keep up, so I'm back to having everything sent to

> my mailbox. I just did a massive delete of everything I wanted to

> send on to other people and never got around to doing it. Hope

life

> is treating everyone well. We or I should say " I " have been busy

> trying to get everything pulled together and organized for the

> beginning of school. I am not looking forward to it to be honest

> with ya all. My " baby " is leaving the nest this year to go to

> kindergarden. She turned five on Tuesday, and says she is ready to

> go to school now! will be attending a secondary intensive

> Learning center school this year. I am praying all goes well and

> that he does good in this atmosphere. He is not happy to be doing

> nineth grade for the third time though. I'm not done with fighting

> to get him credit for the schooling that he recieved in residential

> treatment. Hopefully they will be willing to work with him so he

> can catch up with his peers. Well its dinner time I need to go.

> Barb

Hi Barb,

Welcome back and good luck with . Have you tried going on

digest instead of individual emails? It's a lot less overwhelming.

You can just skim the emails quickly and read what you want.

Kathy

[Guest guest]

Kathy, does this mean going to the groups page and reading the posts there?

Kathy <rwinters@...> wrote:

> Hi to all,

>

> Last week I went to no email status. I found that for the life of

> me, I couldn't keep up with all the posts. My mailbox was always

> over the limit, so I thought I would give the mailbox a break and

> just go to the site to read the posts. Well forget that, it was

> harder for me to keep up, so I'm back to having everything sent to

> my mailbox. I just did a massive delete of everything I wanted to

> send on to other people and never got around to doing it. Hope

life

> is treating everyone well. We or I should say " I " have been busy

> trying to get everything pulled together and organized for the

> beginning of school. I am not looking forward to it to be honest

> with ya all. My " baby " is leaving the nest this year to go to

> kindergarden. She turned five on Tuesday, and says she is ready to

> go to school now! will be attending a secondary intensive

> Learning center school this year. I am praying all goes well and

> that he does good in this atmosphere. He is not happy to be doing

> nineth grade for the third time though. I'm not done with fighting

> to get him credit for the schooling that he recieved in residential

> treatment. Hopefully they will be willing to work with him so he

> can catch up with his peers. Well its dinner time I need to go.

> Barb

Hi Barb,

Welcome back and good luck with . Have you tried going on

digest instead of individual emails? It's a lot less overwhelming.

You can just skim the emails quickly and read what you want.

Kathy

[Guest guest]

> Kathy, does this mean going to the groups page and reading the

posts there?

No. It's a third option. (actually I think it's the second option -

individual emails, digest, no emails.

Go to the groups home page and click on Edit My Membership. Then

click on digest instead of individual emails and click the bottom

thing that probably says something like " change my options. "

Then, instead of getting every email individually, you will get two

or three emails with multiple posts - up to 25. Just be careful when

you reply to digest that you don't leave the entire digest in - erase

most of it and just respond to the post that you're interested in.

Hope that clears it up for you.

Kathy