My Introduction

[Guest guest]

Hi Kiana,

Welcome to the list, you sure have a lyme horror story. I do hope you get

decent treatment. Our prayers go out to you and your family. This list is

wonderful. If you need anything, don't hesitate to ask.

Hugs and lots of them,

Connie,MI

[Guest guest]

Hi Kiana,

Welcome to the list, how nice that you started your letter with humor,

something we all crave when feeling so low. I am also pleased that we have

another health professional on the list, I have no medical training, and am

at a loss to answer many of the questions posted here. So a double welcome

to you. First off, I am so sorry to hear about the death of your pet, I

have HME (Human Monocytic Ehrlichiosis) along with Lyme, and when I was

finally diagnosed with it 7 months after my bite, my doctor told me I was

lucky it did not kill me.

I was mighty sick. I must also tell you that I had those purplish rashes on

my ankles, or rather lower shin bones, I later learned this was consistent

with an extreme immune response, it has a technical name but I can't recall

it. Something like eryethema nodusum. I have a picture of what they looked

like, and I am sending it to you via private email to compare. I hope it is

clear enough for you to see it.

What a horror story that is, your finding all those ticks on you, I would

have fainted. Your entire story and history is so familiar though, many of

us here have had a terrible time getting properly diagnosed and treated.

First off you must find a good Lyme doctor in your area. If you haven't

contacted the Lyme disease foundation yet, or searched Lymenet for a Lyme

doctor near your home, do so ASAP. You have to deal with someone who is

familiar with this disease. There seem to be more and more cases occuring

in California and Arizona, yet the states continue to deny the existence.

Please post if you need help finding a doctor and we will do what we can for

you. Sorry I have no recommendations for gastritis treatment, but someone

on this list will be helpful. Don't be surprised if your tests for Lyme are

negative, there are many reasons for this, including prior treatment, etc.

Lyme is a clinical diagnosis, based solely on symptoms and response to

antibiotic treatment.

Hugs,

Marta

>From: Kiana Rossi <bornfree@...>

>

>

>And with that formality out of the way --

>

>My name is Kiana, 45 years old, married [currently separated], one son,

>and as you will see by my signature I am an artist by profession. It is

>appropriate that on the anniversary of my Golden Retriever's death from

>Erlichiosis [he died on May 25, 1997] I would finally get someone to test

>me for Lyme. The tests results are not back yet. The doctor's appointment

>is June 1.

>

[Guest guest]

>From: " J & M McCoy " <mlmccoy@...>

>

>Hi Kiana,

> Welcome to the list, how nice that you started your letter with humor,

>something we all crave when feeling so low. I am also pleased that we have

>another health professional on the list, I have no medical training, and am

>at a loss to answer many of the questions posted here. So a double welcome

>to you.

--------snip--------

> Something like eryethema nodusum.

---snip---

> If you haven't

>contacted the Lyme disease foundation yet, or searched Lymenet for a Lyme

>doctor near your home, do so ASAP. You have to deal with someone who is

>familiar with this disease.

-------snip----------

>Lyme is a clinical diagnosis, based solely on symptoms and response to

>antibiotic treatment.

>Hugs,

>Marta

Hi Marta,

Thank you for the welcome. I haven't practiced nursing since 1985 but I

still have all the head knowledge, surprisingly. I have had erythema

nodusum before and I thought that was bumps [?], could be wrong. Could

this be that ACA I have read about on the www?

None of those doctors are really close by and I don't have a vehicle of

mine own here. But if this so called Lyme expert is a not I will find a

way to get to one of those doctors.

I am currently on SSDI for another disability which has some Lyme qualities

to it. Mainly suicidal depression, anxiety and panic attacks, and PTSD.

So I have Medicare and Medi-Cal. Just before I started to understand what

I have I thought my time on disability was soon to end. I was going to

begin my art career. I can do art at times and then can't. : (

And your last statement is so true for me. Over and over I have had abx

for other infections [some which didn't exist as per negative results and

being rxd prior to results] and then Herxed within a week after taking it.

Sometimes not until 1 month after taking it which occurred in November -

December 1998.

Kiana Rossi

mailto:bornfree@...

~ ~~ ~~~ ~~~~ ~~~~~ ~~~~~~ ~~~~~~~

" An idea forms into a collocation of colors and design.

My art is a documentary of my complex inner world,

expressing thoughts and feelings through

colored pencils and collage. "

[Guest guest]

i think you win the award. i am going to pass out now. what a story. YOU

HAVE LYME DISEASE, forget about any other possibility. seek PROFESSIONAL

HELP. ask on this list for a good LLMD in your area and stay on the list a

really informative group. glad to have you on the list, you'll learn a lot!

>From: Kiana Rossi <bornfree@...>

>

>First off I love humor and have found laughter IS the best medicine! So

>here is one from the pun list --

>

>Nick's G-Rated Humor List:

>

> Charlie was a chemist

> He's not here any more

> For what he thought was H2O

> Was H2SO4.

MimiAnne's Specialty Coffee

(540) 980-6464

93 W. Main Street

Pulaski, VA 24301

[Guest guest]

Hi Kiana,

I did not think about ACA....yes, that is a possibility, even more reason

you need a good Lyme doctor. I think ACA is one of the last stages of Lyme,

the people I know who have suffered from it have had Lyme for a long time

(untreated). If you do a deja search at:

http://www.deja.com/home_ps.shtml

scroll down the page, till you come to: Subject, type in the correct name

for ACA, (sorry I can't recall the spelling), then go to Forum, type in:

sci.med.diseases.lyme

Then hit enter, this will bring up the Lyme newsgroup discussions about

ACA....you may also see some medical abstracts about this.

Also, you are in California, have you heard of Art Doherty? He has done

more for Lyme disease recognition in that state than anyone I know, here is

his website:

http://www.geocities.com/HotSprings/Spa/6772/resources.html

Check out his whole page, it is chock full of great information. If you

need more information on ACA, he can help you, his email address is at the

bottom of the page, tell him I referred you.

Best to you,

Marta

>

>Hi Marta,

>

>Thank you for the welcome. I haven't practiced nursing since 1985 but I

>still have all the head knowledge, surprisingly. I have had erythema

>nodusum before and I thought that was bumps [?], could be wrong. Could

>this be that ACA I have read about on the www?

>

>None of those doctors are really close by and I don't have a vehicle of

>mine own here. But if this so called Lyme expert is a not I will find a

>way to get to one of those doctors.

>

>I am currently on SSDI for another disability which has some Lyme qualities

>to it. Mainly suicidal depression, anxiety and panic attacks, and PTSD.

>So I have Medicare and Medi-Cal. Just before I started to understand what

>I have I thought my time on disability was soon to end. I was going to

>begin my art career. I can do art at times and then can't. : (

>

>And your last statement is so true for me. Over and over I have had abx

>for other infections [some which didn't exist as per negative results and

>being rxd prior to results] and then Herxed within a week after taking it.

>Sometimes not until 1 month after taking it which occurred in November -

>December 1998.

>

>Kiana Rossi

>mailto:bornfree@...

[Guest guest]

Marta what is ACA? even if you can't spell it try as best you can. I have no

clue as to what it is? LOl -Val

[Guest guest]

Hi Charise! You will find plenty of support from this group. The best

thing I can tell you to do is keep that sense of humor! We are puting

together a band so if you have any joints that click, creek or crunch we

could definitely use you! Take care and smile. We are here for you!

denise in Michigan :>

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Rob - What is this miracle product? Toadessa7

[Guest guest]

This is the first time I've posted to this group, without the real

benefit of observing what or how things are said.

Let me start by saying that I've suffered with Psoriatic Arthritus

since about 1973 and no matter what I tried, nothing seemed to work.

It manafested itself in my fingernails and toenails, and the skin was

constantly breaking out. Nothing the doctor did for me helped. I even

started two skin care companies in the hopes that something would

work, but alas, to no avail, no positive results save for the odd

month when it seem to work, only to regress to nails falling out etc.

then a friend introduced me to a product from Mannatech 2 months ago.

Since then my nails have grown strong, the white moons in my nails

have returned, I've got good color in my nails and even the fungus in

my toes is beginning to withdraw. My skin is also improved

significantly too. I am one happy camper. I joined this group to try

and encourage people that there is a no-pharmaceutical way of dealing

with it. It may not work for all people the same, but hey, I am

totally happy that it's working for me.

Rob

http://www.cbbs.org/david

[Guest guest]

Where can you get this stuff?

[Guest guest]

Can you tell us what the name of the medication is that you got from

Mannatech that worked so well on your toes and skin? You just said that

it was a product from Mannatech. thank you!

________________________________________________________________

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[Guest guest]

Welcome

My daughter is 14 and we live in Atlanta Ga

Shes doing better than this time last year

just uses the wheelchair on trips to six flags now

she has her head set to finish high school then on to college

as i have told her not to let this JRA push in to what she wants to do

its a obstacle but we can get through it when it flares

nothing is impossible if you set your mind to it

determination and will power will be there

what i did was called the local arthritis chapter and got involved by talking

to them

and we met several kids who has JRA also this amazed because she

felt alone with this disease and also this group helped me ALOT when i was

looking for what and reason she got this JRA

you should call your local chapter and ask about anything

they will send you info on what you can do

Robbin

[Guest guest]

Hello Elisheva, and Welcome! I too am only 19, at heart that is, as for

chronological, welllll, 46, OK now back to subject at hand. I was

diagnosed at the age of 13 with jra, and of course there are good and bad

days. I went through my teenage years with an occasional flare, joint

involvement all the normal stuff.

Funny, to call anything to do with a decease as normal, but when you've

lived with jra for so long, it all become normal daily life!

I been going over my medical history, and my early life started out with

a lot of illness.

From birth to the age of 3 I was in an out of the hospital for a variety

of reasons, tonsils, adenoids a trac and also once because the doctor,

thought I had Rheumatic fever.

But after all that was over I went from the age of 3 to 13, with out any

illness. After reading many of these postings on the list, I truly

believe I my very well have been, exhibiting the early signs of jra back

then, when the doctor thought it to be Rheumatic fever!

Let's face it in 1958, not to many doctor were even looking for Arthritis

in children.

I have read on the postings, the problems that some of the suffers of jra

have with, maintaining weight . My self as a child, and today as well,

had and have to eat more than anyone else, to gain and keep weight. As a

child I was able to consume twice the potions of a grown man, and family

and friends would all say, " you're so luck you can eat anything and not

get fat "

And Elisheva, when ever someone should ask you, aren't you too young for

Arthritis, tell them, 'Why yes I am, but Arthur likes them, young and

old he's not picky!'

And when you're asked, 'does it hurt much?' I say 'Only when I'm awake'!

And as you will find as you read more of the postings, we are all around

you, with long out reaching arms for, lots of Hugs and Strong Shoulders,

to Lean on, when you need a good cry!

Hey It helps, and that's the truth.

A. Morse

[Guest guest]

Elishiva-

You're story is certainly scary to us moms. My daughter is in remission now,

and of course I hope it will be permanent. But six years of remission and

there it is again for you!! What were your initial symptoms (prior to the

remission)? How many joints affected, etc? I take it the systematic-like

symptoms following remission were brand new. Good to hear you are now doing

well. Keep in touch. It's great to hear from jra veterans.

Diane

[Guest guest]

Hi :-)

Thanks for all of the replies. It's great to hear from other people

who know what I'm talking about!

Regarding " double-jointedness, " my joints have been hypermobile my

entire life. I am not flexible, actually, because I have tight

muscles, but the joints themselves bend more than they should. My

finger joints all bend backwards, and my thumb joint come out of

socket. Most of my joints are like this, actually, though less so now

because of damage from arthritis. Oh yes, and I also seem to be able

to eat and eat without gaining weight. When I was little I didn't eat

much, particularly once my jaw became arthritic. I wasn't really

interested in food. I was too skinny and the doctor made my mother

give me protein shakes and stuff.

I had lots of joint pain when I was little, starting at about age 5

or 6. The doctors called it " growing pains " , and some actually said

it was psychosomatic pain. Well, I have always been a bit of a

hypochondriac, but I'm convinced that it was just a precursor to full-

blown JRA. When I was 7 my ankles became painful and swollen,

particularly the left one. The doctors x-rayed the left ankle, and

then told me that there was nothing wrong. The right one wasn't

really swollen, so they figured I had probably just hurt myself, even

though my mother told them it had been ages since the problem

started. At this age I was also diagnosed with TMJ trouble in the

jaw. Just after my eighth birthday I injured my left wrist at a

fencing camp (fencing was my sport when I was a child). But the wrist

never got better, and in fact continued to swell, and it was red and

very painful. So that was when I finally got my diagnosis, since my

ankles, hips, wrists, shoulders, and jaw showed signs of rheumatoid

activity. Interestingly, my uncle, my mother's brother, is a

rheumatologist, and he is very close to the family. RA does run in

our family, but there's not another case of JRA that I know of.

I was just on anti-inflammatories when I was little because I had a

mild case. But when it came back as a teenager it was with a

vengence, and I have tried a lot of disease-modifying drugs since

then. Like I said, I now take Enbrel and Mobic and am doing well. I

will need wrist surgery by the end of the year. I spoke to the

doctor, but they're not sure what to do yet. I would like to have a

wrist fusion and get it over with. My left wrist remains my worst

joint because along with the RA it also has chronic injury going all

the way back to when I was 8. It looks nothing like my other wrist

because it didn't really grow correctly.

Re: how to apply warmth to joints, I find that a large-sized store-

bought heating pad works best for me. I have a long one that can be

wrapped around any joint, really, and I use it quite a bit. It has

different heat settings also.

Anyway, sorry again for the length. I am happy to hear about the

children who are in remission. Good luck, and all of you - be well!

Elisheva

[Guest guest]

Hi

Welcome aboard! It is great to have another member. I am a sahm for our 6

yr old Bradley with AS/ADHD/OCD and 5 yr old Ally - NT. I am married and he

is a pain in the rump. HAHAHA -

only half kidding. He works at his job very hard so I can stay home with

the kids. He just isn't real good at the " dad thing " . He will choose

cleaning up the kitchen or the dinner mess over sitting with the kids and

reading a book or playing a game. Anyway, enough husband bashing (for now)

LOL!!!

I am glad you have come out of lurkdom.

When I first got the dx - I was a bit shaken - to say the least. I had

never even heard of it. But now, I think - " it is what it is " - Just

because he has Asperger's doesn't mean he " is " Asperger's. you know what I

mean?

we have done very well with behaviour modification - we have also tried a

few meds but nothing has worked out just yet.

Looking forward to getting to know you better.

Take care,

Dawn

Hi Everyone,

I have been lurking for a little while and just really trying to absorb all

of your experiences, I thought that I had better introduce myself so that I

could start asking some questions.

My name is and I am a work at home Mom to two boys is 15 months

and is 4 1/2. I luckily have a great husband as well. We live in Rural

North Dakota. was diagnosed with severe Sensory Integration Disorder

in November and just recently diagnosed with Asperger's as well. We have

been trying to figure out what was going on with since he was tiny and

I know I was beginning to feel like everyone thought I was crazy by the time

we met up with the right " professionals. "

I am really just trying to get use to what Asperger's means to our family

and how best to help our son. We have been doing OT and PT since November

with incredible results and recently began seeing a therapist too. WE had

our first profile meeting with the school to get his IEP rolling last week

and that seemed to go okay. I now we have a long road and it is really nice

to know that I am not the only one going through all of these things. Thanks

for letting me join your group.

Kellogg

Raising happy and healthy children while working from home!

http://tkellogg.themomteam.com

tkellogg@...

[Guest guest]

Hi ,

Welcome, this is . I am a SAHM to age 11 who has AS and age 9

who has ADHD and I wonder if some of nicole's symptoms as well. I also am

married and have a hubbie who would prefer to do anything besides deal with the

reality that is AS. It is tough and it doesn't go away.

was officially dx at the age of 8 but that is just paperwork. She has

been this way forever.

Glad you are around and hope we hear from you soon

Re: ( ) My Introduction

Hi

Welcome aboard! It is great to have another member. I am a sahm for our 6

yr old Bradley with AS/ADHD/OCD and 5 yr old Ally - NT. I am married and he

is a pain in the rump. HAHAHA -

only half kidding. He works at his job very hard so I can stay home with

the kids. He just isn't real good at the " dad thing " . He will choose

cleaning up the kitchen or the dinner mess over sitting with the kids and

reading a book or playing a game. Anyway, enough husband bashing (for now)

LOL!!!

I am glad you have come out of lurkdom.

When I first got the dx - I was a bit shaken - to say the least. I had

never even heard of it. But now, I think - " it is what it is " - Just

because he has Asperger's doesn't mean he " is " Asperger's. you know what I

mean?

we have done very well with behaviour modification - we have also tried a

few meds but nothing has worked out just yet.

Looking forward to getting to know you better.

Take care,

Dawn

Hi Everyone,

I have been lurking for a little while and just really trying to absorb all

of your experiences, I thought that I had better introduce myself so that I

could start asking some questions.

My name is and I am a work at home Mom to two boys is 15 months

and is 4 1/2. I luckily have a great husband as well. We live in Rural

North Dakota. was diagnosed with severe Sensory Integration Disorder

in November and just recently diagnosed with Asperger's as well. We have

been trying to figure out what was going on with since he was tiny and

I know I was beginning to feel like everyone thought I was crazy by the time

we met up with the right " professionals. "

I am really just trying to get use to what Asperger's means to our family

and how best to help our son. We have been doing OT and PT since November

with incredible results and recently began seeing a therapist too. WE had

our first profile meeting with the school to get his IEP rolling last week

and that seemed to go okay. I now we have a long road and it is really nice

to know that I am not the only one going through all of these things. Thanks

for letting me join your group.

Kellogg

Raising happy and healthy children while working from home!

http://tkellogg.themomteam.com

tkellogg@...

[Guest guest]

Welcome to the group !! I would love to hear what you do to work at

home--feel free to email me offlist. I would also like to thank you for sending

out the message from Amazon for the 10% off the books you selected.

I look forward to hearing more about your family.

You said you were trying to get used to what AS means to your family. What have

you come up with? I am dealing with the same thing.

MISSY

SAHM of MANY

April is Autism Awareness Month!!

Become aware of our special kids!!

Excuse Me While I Go

Raise Tomorrow's Future.

( ) My Introduction

Hi Everyone,

I have been lurking for a little while and just really trying to absorb all of

your experiences, I thought that I had better introduce myself so that I could

start asking some questions.

My name is and I am a work at home Mom to two boys is 15 months and

is 4 1/2. I luckily have a great husband as well. We live in Rural North

Dakota. was diagnosed with severe Sensory Integration Disorder in

November and just recently diagnosed with Asperger's as well. We have been

trying to figure out what was going on with since he was tiny and I know I

was beginning to feel like everyone thought I was crazy by the time we met up

with the right " professionals. "

I am really just trying to get use to what Asperger's means to our family and

how best to help our son. We have been doing OT and PT since November with

incredible results and recently began seeing a therapist too. WE had our first

profile meeting with the school to get his IEP rolling last week and that seemed

to go okay. I now we have a long road and it is really nice to know that I am

not the only one going through all of these things. Thanks for letting me join

your group.

Kellogg

Raising happy and healthy children while working from home!

http://tkellogg.themomteam.com

tkellogg@...

[Guest guest]

Thanks for the Welcome Missy!

To find out more about what I do from home you can check out my web site

www.tkellogg.themomteam.com and let me know what questions you have and I

would be happy to give you all of the details :-) I have been working with

this team for over two years and it is really incredible, I would never

consider not being at home with my kids now that I realize that I can be.

Your welcome on sending the discount from Amazon too. I hoped that no one

would be offended but I thought these books looked great and order from

Amazon all the time.

I am not sure yet what Asperger's means to our family other than it is a

name for what we have been experiencing for a long time. I will try to let

you know what else I think it means as I figure it out myself :-)

So nice to meet you and everyone else.

Kellogg

Raising happy and healthy children while working from home!

http://tkellogg.themomteam.com

tkellogg@...

( ) My Introduction

>

>

> Hi Everyone,

> I have been lurking for a little while and just really trying to absorb

all of your experiences, I thought that I had better introduce myself so

that I could start asking some questions.

> My name is and I am a work at home Mom to two boys is 15

months and is 4 1/2. I luckily have a great husband as well. We live

in Rural North Dakota. was diagnosed with severe Sensory Integration

Disorder in November and just recently diagnosed with Asperger's as well.

We have been trying to figure out what was going on with since he was

tiny and I know I was beginning to feel like everyone thought I was crazy by

the time we met up with the right " professionals. "

> I am really just trying to get use to what Asperger's means to our

family and how best to help our son. We have been doing OT and PT since

November with incredible results and recently began seeing a therapist too.

WE had our first profile meeting with the school to get his IEP rolling last

week and that seemed to go okay. I now we have a long road and it is really

nice to know that I am not the only one going through all of these things.

Thanks for letting me join your group.

> Kellogg

> Raising happy and healthy children while working from home!

> http://tkellogg.themomteam.com

> tkellogg@...

>

>

>

[Guest guest]

Missy,

Sorry I typed in the address to my web site wrong. The correct address is

http://tkellogg.themomteam.com

Kellogg

Raising happy and healthy children while working from home!

http://tkellogg.themomteam.com

tkellogg@...

( ) My Introduction

> >

> >

> > Hi Everyone,

> > I have been lurking for a little while and just really trying to

absorb

> all of your experiences, I thought that I had better introduce myself so

> that I could start asking some questions.

> > My name is and I am a work at home Mom to two boys is 15

> months and is 4 1/2. I luckily have a great husband as well. We

live

> in Rural North Dakota. was diagnosed with severe Sensory

Integration

> Disorder in November and just recently diagnosed with Asperger's as well.

> We have been trying to figure out what was going on with since he

was

> tiny and I know I was beginning to feel like everyone thought I was crazy

by

> the time we met up with the right " professionals. "

> > I am really just trying to get use to what Asperger's means to our

> family and how best to help our son. We have been doing OT and PT since

> November with incredible results and recently began seeing a therapist

too.

> WE had our first profile meeting with the school to get his IEP rolling

last

> week and that seemed to go okay. I now we have a long road and it is

really

> nice to know that I am not the only one going through all of these things.

> Thanks for letting me join your group.

> > Kellogg

> > Raising happy and healthy children while working from home!

> > http://tkellogg.themomteam.com

> > tkellogg@...

> >

> >

> >

[Guest guest]

((((((((((Sally))))))))))) Thanks for sharing that and for giving us your

experience and a look into your life. (You've been through so much). You

mentioned that your hair is falling out again, and that made me remember that my

hair (prior to diagnosis) seemed to be " falling out " (I was getting noticably

" thin " ). I remember complaining to my GYN doc several years ago about

feeling so tired, about having night sweats, about having no sex drive anymore,

and

about my hair getting thin. He commented " it might mean you're

pre-menopausal " . (Yeah right - blame it on being premenopausal -- LOL! )

Since having

been diagnosed, I look back at those times I felt was having weird symptoms

and complaints, and now -- I attribute ALL of those " weird symptoms "

(exhaustion, rashes, tingling sensations, sleeplessness, hair thinning, etc.)

to the

natural interferon my body was apparently producing when my viral load was

apparently " going up " . And yes.... (at least in my opinion), I will have to

agree

with you -- that your feeling poorly again and you hair thinning again

probably does mean your viral load is up. It's frustrating feeling " OK " one

month

(or for several months) and to then " crash " again. In my case (over the

past five or six years) it seems I have " come and gone " with my energy level.

I think it ALL has to do with the fact that the symptoms of chronic Hep C seem

to " wax and wane " (come and go). We might feel OK one month and feel like

pure poo pa doo the next. And the treatment surely brings about further

complications with other " systems " for many who go through the treatment. It's

like " trading this for that " (get rid of the virus but take on other illnesses

to do so).

You hang in there. You're a fighter!

In a message dated 1/15/2004 11:58:38 PM Eastern Standard Time,

shines@... writes:

> Thank you all for the wonderful welcomes. It looks like this

> list may replace the wonderful list I was on since

> diagnosis, in 1996. I finally had to leave that list as it

> was no longer support for me.

>

> In addition to the HCV diagnosis in 1996 I was diagnosed

> with Diabetes 2. Because of a biopsy that showed early

> cirrhosis at that time I was put onto Insulin therapy for

> the DM2.

>

> As mentioned above I was diagnosed with HCV in 1996. I was

> diagnosed non-a non-b in 1988. Elevated lft's were found in

> 1975. My gall bladder was removed in 1969. I was severely

> anemic in 1954, and got my blood tested in the doctor office

> weekly. The nurse did the entire test herself, from lancing

> my finger to reading the slide. She used used lancets, that

> she kept in a dish of alcohol. They were dull, and hurt like

> the devil when she poked me with them. I had liver

> discomfort and " flu " from that time, with few respites.

>

> I'm a 55 year old grandmother, and all my children and

> grandchildren have been tested, just to be sure. All

> negative. I'm very thankful for that.

>

> Back in my young and dumb years I did some IVDU. Big

> mistake, I know. I could have gotten the virus then, but

> since my symptoms preceed that time, I fear its more likely

> that I was a contributor. But who knows by this time.

>

> At any rate, I did combo therapy in 1998/99, responded

> during therapy, and relapsed immediately after, if not

> before. I had to move from the town I lived in, and take

> another job in another city to get the chance to receive

> treatment. Doctors in my home town, where I was diagnosed,

> refused to offer me treatment of any kind.

>

> The way I did combo was to use Infergen three times a week,

> and through a non-profit in New York City I got imported

> Ribavirin from Mexico. I strongly believe that the Riba I

> took then was superior to the Riba I finished my " combo "

> with. I got donated left over Riba from the Intron that was

> just starting to be dispensed. I know the blister packs for

> the US dispensed drugs were very " old fashioned " blister

> packs, with unperforated cardboard backing and very tough

> plastic blisters. I hadn't seen this type of packaging for

> 20 years before that. The blister packs I got from Mexico

> were foil backed, and softer plastic blisters, no problem at

> all getting the capsules out of the package. I was negative

> all during using the Mexican drug. The only test I had after

> my switch was the US drug was 2 weeks after stopping the

> treatment. I was positive again by then, and by high

> numbers.

>

> During treatment I got horribly depressed <no surprise> and

> was put on Prozac. I thought it helped. A previously

> existing sleep disorder, severe sleep apnea, was diagnosed,

> and I started using a CPAP machine to get sleep at night.

> Even with that I was exhausted. I was short of breath. I

> could barely climb the flight of stairs to my apartment. I

> had horrible migraines, and got mouth sores, blisters all

> over inside my mouth. My hair fell out, and it was never

> very thick and full. My response to insulin changed during

> treatment. I needed considerably less. I couldn't make it to

> work, and finally, 9 months into treatment I had to take

> disability leave.

>

> Treatment ended in the fall of 99 and am still suffering the

> migraines, exhustion, and general " flu " symptoms most days.

> My hair grew back, thicker than it had ever been. And it

> grew back wavy, previously it had been limp as a wet

> dishrag. I started a new job after Christmas, was out of

> work for over 2 years, and now my hair is falling out again.

> My throat is sore, my muscles and joints ache. I'm

> exhausted, can't get enough sleep. If I can get health

> insurance again I bet my viral load will be high again.

>

> I learned a lot on the list I was on before. I've been

> looking for the level of information and medical related

> hepatitis discussion that was once there for some time. This

> list looks like it may be as good, or perhaps even better.

>

> Again, thanks for the welcomes.

>

> Sally Hines

> Shines@...

> HCV, DM2, early cirrhosis, hypothyroid, high blood pressure

> (controlled), sleep apnea, visual migraine, migraine, severe

> edema.

[Guest guest]

((((((((((Sally))))))))))) Thanks for sharing that and for giving us your

experience and a look into your life. (You've been through so much). You

mentioned that your hair is falling out again, and that made me remember that my

hair (prior to diagnosis) seemed to be " falling out " (I was getting noticably

" thin " ). I remember complaining to my GYN doc several years ago about

feeling so tired, about having night sweats, about having no sex drive anymore,

and

about my hair getting thin. He commented " it might mean you're

pre-menopausal " . (Yeah right - blame it on being premenopausal -- LOL! )

Since having

been diagnosed, I look back at those times I felt was having weird symptoms

and complaints, and now -- I attribute ALL of those " weird symptoms "

(exhaustion, rashes, tingling sensations, sleeplessness, hair thinning, etc.)

to the

natural interferon my body was apparently producing when my viral load was

apparently " going up " . And yes.... (at least in my opinion), I will have to

agree

with you -- that your feeling poorly again and you hair thinning again

probably does mean your viral load is up. It's frustrating feeling " OK " one

month

(or for several months) and to then " crash " again. In my case (over the

past five or six years) it seems I have " come and gone " with my energy level.

I think it ALL has to do with the fact that the symptoms of chronic Hep C seem

to " wax and wane " (come and go). We might feel OK one month and feel like

pure poo pa doo the next. And the treatment surely brings about further

complications with other " systems " for many who go through the treatment. It's

like " trading this for that " (get rid of the virus but take on other illnesses

to do so).

You hang in there. You're a fighter!

In a message dated 1/15/2004 11:58:38 PM Eastern Standard Time,

shines@... writes:

> Thank you all for the wonderful welcomes. It looks like this

> list may replace the wonderful list I was on since

> diagnosis, in 1996. I finally had to leave that list as it

> was no longer support for me.

>

> In addition to the HCV diagnosis in 1996 I was diagnosed

> with Diabetes 2. Because of a biopsy that showed early

> cirrhosis at that time I was put onto Insulin therapy for

> the DM2.

>

> As mentioned above I was diagnosed with HCV in 1996. I was

> diagnosed non-a non-b in 1988. Elevated lft's were found in

> 1975. My gall bladder was removed in 1969. I was severely

> anemic in 1954, and got my blood tested in the doctor office

> weekly. The nurse did the entire test herself, from lancing

> my finger to reading the slide. She used used lancets, that

> she kept in a dish of alcohol. They were dull, and hurt like

> the devil when she poked me with them. I had liver

> discomfort and " flu " from that time, with few respites.

>

> I'm a 55 year old grandmother, and all my children and

> grandchildren have been tested, just to be sure. All

> negative. I'm very thankful for that.

>

> Back in my young and dumb years I did some IVDU. Big

> mistake, I know. I could have gotten the virus then, but

> since my symptoms preceed that time, I fear its more likely

> that I was a contributor. But who knows by this time.

>

> At any rate, I did combo therapy in 1998/99, responded

> during therapy, and relapsed immediately after, if not

> before. I had to move from the town I lived in, and take

> another job in another city to get the chance to receive

> treatment. Doctors in my home town, where I was diagnosed,

> refused to offer me treatment of any kind.

>

> The way I did combo was to use Infergen three times a week,

> and through a non-profit in New York City I got imported

> Ribavirin from Mexico. I strongly believe that the Riba I

> took then was superior to the Riba I finished my " combo "

> with. I got donated left over Riba from the Intron that was

> just starting to be dispensed. I know the blister packs for

> the US dispensed drugs were very " old fashioned " blister

> packs, with unperforated cardboard backing and very tough

> plastic blisters. I hadn't seen this type of packaging for

> 20 years before that. The blister packs I got from Mexico

> were foil backed, and softer plastic blisters, no problem at

> all getting the capsules out of the package. I was negative

> all during using the Mexican drug. The only test I had after

> my switch was the US drug was 2 weeks after stopping the

> treatment. I was positive again by then, and by high

> numbers.

>

> During treatment I got horribly depressed <no surprise> and

> was put on Prozac. I thought it helped. A previously

> existing sleep disorder, severe sleep apnea, was diagnosed,

> and I started using a CPAP machine to get sleep at night.

> Even with that I was exhausted. I was short of breath. I

> could barely climb the flight of stairs to my apartment. I

> had horrible migraines, and got mouth sores, blisters all

> over inside my mouth. My hair fell out, and it was never

> very thick and full. My response to insulin changed during

> treatment. I needed considerably less. I couldn't make it to

> work, and finally, 9 months into treatment I had to take

> disability leave.

>

> Treatment ended in the fall of 99 and am still suffering the

> migraines, exhustion, and general " flu " symptoms most days.

> My hair grew back, thicker than it had ever been. And it

> grew back wavy, previously it had been limp as a wet

> dishrag. I started a new job after Christmas, was out of

> work for over 2 years, and now my hair is falling out again.

> My throat is sore, my muscles and joints ache. I'm

> exhausted, can't get enough sleep. If I can get health

> insurance again I bet my viral load will be high again.

>

> I learned a lot on the list I was on before. I've been

> looking for the level of information and medical related

> hepatitis discussion that was once there for some time. This

> list looks like it may be as good, or perhaps even better.

>

> Again, thanks for the welcomes.

>

> Sally Hines

> Shines@...

> HCV, DM2, early cirrhosis, hypothyroid, high blood pressure

> (controlled), sleep apnea, visual migraine, migraine, severe

> edema.

[Guest guest]

Dear Willem, I can mail you some straight blonde hair... for a price. Email

privately for cost.

Alley

[Guest guest]

Dear Willem, I can mail you some straight blonde hair... for a price. Email

privately for cost.

Alley

[Guest guest]

Holliman: I just went and signed up for you tempeh list!

Vona

My introduction

>

>

> I am a new member and have lived in Canada for thirteen years. I have

> the same country of origin with tempeh, so I have eaten tempeh since I

> was a toddler. In Canada buy tempeh from my friends who produce

> tempeh. It was not until December last year that I began to be

> interested to make my own tempeh.

>

> When I visited my son and his family, who live in Austin, Texas in

> December 2004, I met with a very old friend of over 45 years. He was my

> classmate in a medical school in Indonesia. He has resided in Austin

> for 35 years. His wife taught me how to make tempeh, and she also gave

> me a bag of soybeans and a small box of inoculum for tempeh. With my

> wife and my daughter-in-law, I succeeded to make my first tempeh. My

> daughter-in-law was very pleased for being able to make her own tempeh;

> likewise, she did no longer need to drive to Houston (over two hours'

> drive) to buy tempeh.

>

> At home, I was running out of inoculum, and I searched in the Internet

> for information of how to make this greyish stuff called tempeh

> starter. Following the information that I have found, I succeeded to

> make my own tempeh starter. I must still learn many things, for

> example, how to gauge and appraise the strength of my tempeh starter

> without having a microscope. I also have experienced several failures

> in making tempeh, such as rotting and under-growing.

>

> Last month I also created tempeh

> <mailto:tempeh > to learn and share the know-how and

> experiences about making tempeh and tempeh starter. We also discuss the

> problems of making fermented sweet rice and fermented cassava, as well

> as soymilk and tofu.

>

> Regards,

> Haliman

>

>

>

>