Hello

[Guest guest]

> In a message dated 9/5/03 1:03:38 PM Eastern Daylight Time,

> swtthing12201999@y... writes:

>

> << what happens if you dont take ANY MEDS?????? >>

>

> Unfortunately you will probably flare and get worse. If you want to

see what

> happens, make sure your Dr. is with you the whole way! I have an

Aunt with PA

> who is currently on no meds after years of meds. She has problems,

but she

> seems to be doing pretty well.

>

>

It will depend how far along you are in your disease. I'm fairly bad,

I have 4 out of the 5 types you can have. I went without mine for 6

months. This was because of a job change. I found the two months not

very bad, but the last 4 almost did me in. I found that the cronic

pain was to much to handle. So play it like tiffany said, keep your

doctor involved.

Dave

[Guest guest]

Is it quiet in here or am I not getting the posts for some reason?

Question......does anyone ever experience a general heaviness all

over? It seems to come with the pain and my entire body " hurts. "

The I take my pain meds and my hands still hurt a bit but the

heaviness goes away. Is this real? Does this happen to anyone else?

Isn't that a shame? I have to ask is this real? This whole entire

disease seems so un-real!

Best to all....

[Guest guest]

I have the " heaviness " ,that some of you described, on many days...I feel so

tired that I can barely move yet I am not on MTX...so, some of it must also

just be coming from our disease. Cyndi

[Guest guest]

Hi (fellow mtx newbie) - how the devil are you???

You are not alone with the feeling of heaviness - I also experience

this - feel like I weigh a ton, walking a half block with a slight

incline feels like I can hardly lift up my legs... I had not really

even thought about it, per se, having assumed in the back of my mind,

I imagine, that it went with the territory. Ah, the wonders and joys

of this delightful dis-ease we have... LOL.

Hope you are well and tolerating the mtx well - as well that your

kidderoos are great.

Take care and talk soon,

> Is it quiet in here or am I not getting the posts for some reason?

>

> Question......does anyone ever experience a general heaviness all

> over? It seems to come with the pain and my entire body " hurts. "

> The I take my pain meds and my hands still hurt a bit but the

> heaviness goes away. Is this real? Does this happen to anyone

else?

>

> Isn't that a shame? I have to ask is this real? This whole entire

> disease seems so un-real!

>

> Best to all....

>

[Guest guest]

Hey ....and all....

I received an email also from another member who describes having

heaviness. I'm so glad to know I'm not the only person, but very

sorry that any of us have to experience it. It will be interesting

to find out if other people have this as well.

Isn't it amazing how many different aspects of pain we get to

discover with this disease?!

MTX going quite well...it was a good choice for me....up to 10mgs now

and I'm doing much better. I'll take whatever I can get however long

I can get it!

best,

[Guest guest]

Welcome, Dave! I don't have much advice, I just wanted to say that

we all experience depression from time to time, it's a guaranteed

side effect of having this crap. Sometimes just coming here and

realizing I'm not alone helps me get thru it.

Penny

> Hi everyone! my name is dave and i'm from grafton, MA. I have had

PA

> for about 15 years. But was just diagnosed 5 years ago. I'm

currently

> on Remicade and MTX also a few others. the remicade has just

recently

> became less efffective. I'm a on the road salesman presently. I

> jioned this group hoping that other people would have some insight

on

> how to deal with depression and the pain? I only take my pain meds

on

> weekend nights so that I can sleep. This is because I have a

daughter

> that is 20 months old and I don't want her seeing me comotose. The

> other reason is that I have a hard time thinking clearly when I'm

> taking them.

>

> Any advise would be appreciated

>

> Dave

>

> Here is my home email. the one I registered under is my wifes work

> one. ddskehan @ juno.com

[Guest guest]

Yes, I feel that way sometimes. And it's always accompanied by

exhaustion.

Penny

> Is it quiet in here or am I not getting the posts for some

reason?

>

> Question......does anyone ever experience a general heaviness all

> over? It seems to come with the pain and my entire body " hurts. "

> The I take my pain meds and my hands still hurt a bit but the

> heaviness goes away. Is this real? Does this happen to anyone

else?

>

> Isn't that a shame? I have to ask is this real? This whole

entire

> disease seems so un-real!

>

> Best to all....

>

[Guest guest]

,

I do. I feel an overwhelming pain throughout my body not just in my

joints. It drags my body and my spirit down.

Now, I wonder if this is Fibro?

Debra J

" " <CARBEN1@a...> wrote:

> Question......does anyone ever experience a general heaviness all

> over? It seems to come with the pain and my entire body " hurts. "

> The I take my pain meds and my hands still hurt a bit but the

> heaviness goes away. Is this real? Does this happen to anyone

else?

[Guest guest]

In a message dated 9/10/03 2:49:54 AM Eastern Daylight Time, CARBEN1@...

writes:

> Question......does anyone ever experience a general heaviness all

> over?

Hi, I can relate, I am having one of those heavy days today, it just hurts to

drag my body around. I only get this way in the midst of a flare, when I am

not flaring, I have pain but no heaviness. Seems to also travel with the

intense fatigue and brain fog. UGH. First time I am having this in a few

months...

[Guest guest]

Most Lyme patients go through the same thing. The medical profession is in

denial. for more info go to:

www.lymediseaseassociation.org

www.lymetruth.org

www.ilads.org

www.actionlyme.com

www.faim.org

Rita

[ ] hello

Hello,

How is eveyone today? My husband has thinks he has lyme disease and

he is going crazy because no one will help him. All the doctors ask

if he has anxiety or is depressed but the truth is how can you not

be depressed if you been sick for a year and a half and no one knows

why. Yes he has a little anxiety because he thinks he's dying. He

has a headache everyday, dizzy , neck is stiff, walks around like

he's in a dream world. He can't even see straight without really

trying. His legs and arms get tingly and numb.

we are from Massachusetts and if anyone knows of a good doctor that

knows what he's talking about let me know. He goes to see a

specalist on wednesday.

mel

[Guest guest]

You've come to the right place. We'll do our best to answer any questions you have. I know it's a tough time coming to terms with this after just finding out, we all went through it. But it is not the end of the world. I look forward to hearing more from you. -dz-rick <r_martin85@...> wrote:

hi all, i am new here and was diag. a few months back with hep c. They have not started treatment yet as i have to call doc. tomorrow.so i am sure i will be asking for a lot of info. soon.

[Guest guest]

> I have received the results of my Rebetron Therapy: Non Responder.

> Negative for Liver Cancer:)I have started a group for all Hep C

> people and their families please check it out and join.I am just

> getting started, so suggestions and info encouraged and welcome.The

> only caveat: No squabbling or rude behavior permitted.Check it out

> and give her a try! Thanks....Peace...HepGrama

Please visit:hepcnonresponders

The name of the group is:HepC Nonresponders.....Thanks:)

[Guest guest]

Mel-

If you call me, I can help.

If you leave a number, I will be happy to call you back.

I am a lyme specialist. Been there, done it. So have 5 of my 6 kids, husband

nearly died from lyme.

I don't have time to type anymore.

PLEASE, anyone that wants help, call me.

sue massie, CNHP

732 933-4011

[Guest guest]

Sorry to hear you did not respond to treatment, but good luck on your continued fight and while we would all love to be rid of it, we know it can be lived with and I wish you all the best until a better treatment comes along -dz-Laurie <tataina@...> wrote:

I have received the results of my Rebetron Therapy: Non Responder. Negative for Liver Cancer:)I have started a group for all Hep C people and their families please check it out and join.I am just getting started, so suggestions and info encouraged and welcome.The only caveat: No squabbling or rude behavior permitted.Check it out and give her a try! Thanks....Peace...HepGrama

[Guest guest]

Good luck to you. I don't know of any connection between high cholesterol and hcv. My cholesterol has never been high. I, too suffered severe mood swings. Antidepressants are usually a good idea, unless, for some reason you can't take them. The recommended diet for hcv is a good one for lowering cholesterol. I lost about 25 pounds while on the treatment. I have to admit I did not adhere to any particular diet. I just tried to cut back on the red meats and fatty foods, but did not eliminate them. I don't use alcohol anyway. Congratulations on your weight loss! Good start to better health. The best recommendation is a good sensible diet, avoid any iron enriched foods and by all means avoid alcohol. I too, went from about 205 to 175, then back up to 200(after treatment), but I'm back down to about 185 now. I have been undetectable since June of 2001. -dz-Bobby Yoo Who <swaveanddebonerguy@...> wrote:

Hi Everyone!I'm a 40 year-old male and was diagnosed with HepC about two weeks ago. I was told by my family Phyc....Physe....Phyz...(screw it)..doctor that it looked like I was a good candidate for treatment, according to initial test results. My brother has HepC and he underwent treatment with very successful results meaning, no indication of HepC in his blod tests.His treatment lasted a year, but negative HepC results were negative after 6 months of treatment. He continued his treatment for the full year.His side-effects were primarily of the emotional kind, and he was a ticking time-bomb at times. He began to notice his mood swings and for the benefit of all,he would steer clear of us. I must admit, I would be much more depressed/angry/scared etc.. if I did not have my brother go through this first. I gained alot of knowledge

regarding HepC due to that. I would never wish HepC on anyone, but I actually thanked him last week for having it first. I DO have moments where the negative emotions from the reality of having HepC get the better of me, but I know that is expected and very normal. My family and fiance'(who will be tested) and my son (who is 12 and will be tested this month) are very supportive. I can't see a specialist until December. My biopsy will be scheduled through him. I have a question though. I have high cholesterol and can not take any meds for it due to my diseased liver. All meds for this are statins which can effect a good liver in a negative way ( approx. 10% chance of that) With a diseased liver, statins are NOT an option. Anyway, my brother said his cholesterol was high when he was told of his HepC and it eventually went down to normal levels during treatment. I realize that the liver has a major role with cholesterol. My

question is, when one has HepC (or diseased liver)is high cholesterol usually associated with it? My doctor told me that statins would be the only way to bring it down (he said this prior to the knowledge of my HepC). He also stated that diet would not help unless I ate wood (and he was serious). In spite of what he said, I began eating better in Jan. (no more fast food and all that other good stuff) Since, I have lost 30lbs. (from 205 to 175). I don't feel any more energetic than I did before, but I sure have a lot of clothes that don't fit anymore! But, as he stated, eating healthier wouldn't work and my cholesterol has been slowly climbing. At the onset of my cholesterol problem, I DID take a statin (Lipitor) for three months. It worked, but for obvious reasons (high AST and ALT levels), I had to stop. My cholesterol is climbing again and it is moderately high. Any suggestions, remarks, replies, just to say hi, anything from

any of you would help. Thanks people!! Have a great day and my hats off to all of you! :-)

[Guest guest]

Hi Dave,

Thanks for the info etc. Very much appreciated. I'm glad we have

this support group. As far as the hcv diet goes, I think I am

already adhering to it for the most part, as I have been watching my

cholesterol since January and my brother (also hcv positive and also

a treatment success story) gave me pointers on what to avoid

regarding the hcv. He and I both figured I had hcv in January, when

it was discovered my AST and ALT levels were high. Obviously,we were

both right, but my doctor wasn't convinced. It didn't help that an

abdominal ultrasound stated my liver was mildly fatty. That can

raise the AST and ALT levels as well. But, my doctor gave in about a

month ago and I was tested. So, in short, I wasn't that surprised

with the results being positive. So, now I'm at a point where I am

standing with both gloves on, ready to take it on. I will keep you

all posted as to how I'm doing. Again, I'm very happy this support

group (and others like it) are so readily available. Take care,

Nick

Hi Everyone!

> I'm a 40 year-old male and was diagnosed with HepC about two weeks

> ago. I was told by my family Phyc....Physe....Phyz...(screw

> it)..doctor that it looked like I was a good candidate for

> treatment, according to initial test results. My brother has HepC

> and he underwent treatment with very successful results meaning,

no

> indication of HepC in his blod tests.His treatment lasted a year,

> but negative HepC results were negative after 6 months of

treatment.

> He continued his treatment for the full year.His side-effects were

> primarily of the emotional kind, and he was a ticking time-bomb at

> times. He began to notice his mood swings and for the benefit of

> all,he would steer clear of us. I must admit, I would be much more

> depressed/angry/scared etc.. if I did not have my brother go

through

> this first. I gained alot of knowledge regarding HepC due to that.

I

> would never wish HepC on anyone, but I actually thanked him last

> week for having it first. I DO have moments where the negative

> emotions from the reality of having HepC get the better of me, but

I

> know that is expected and very normal. My family and fiance'(who

> will be tested) and my son (who is 12 and will be tested this

month)

> are very supportive. I can't see a specialist until December. My

> biopsy will be scheduled through him. I have a question though. I

> have high cholesterol and can not take any meds for it due to my

> diseased liver. All meds for this are statins which can effect a

> good liver in a negative way ( approx. 10% chance of that) With a

> diseased liver, statins are NOT an option. Anyway, my brother said

> his cholesterol was high when he was told of his HepC and it

> eventually went down to normal levels during treatment. I realize

> that the liver has a major role with cholesterol. My question is,

> when one has HepC (or diseased liver)is high cholesterol usually

> associated with it? My doctor told me that statins would be the

only

> way to bring it down (he said this prior to the knowledge of my

> HepC). He also stated that diet would not help unless I ate wood

> (and he was serious). In spite of what he said, I began eating

> better in Jan. (no more fast food and all that other good stuff)

> Since, I have lost 30lbs. (from 205 to 175). I don't feel any more

> energetic than I did before, but I sure have a lot of clothes that

> don't fit anymore! But, as he stated, eating healthier wouldn't

work

> and my cholesterol has been slowly climbing. At the onset of my

> cholesterol problem, I DID take a statin (Lipitor) for three

months.

> It worked, but for obvious reasons (high AST and ALT levels), I

had

> to stop. My cholesterol is climbing again and it is moderately

high.

> Any suggestions, remarks, replies, just to say hi, anything from

any

> of you would help. Thanks people!! Have a great day and my hats

off

> to all of you! :-)

>

>

>

[Guest guest]

You've got the right attitude for it. I'm sure you'll do well. Keep us posted with any updates. -dz-Bobby Yoo Who <swaveanddebonerguy@...> wrote:

Hi Dave,Thanks for the info etc. Very much appreciated. I'm glad we have this support group. As far as the hcv diet goes, I think I am already adhering to it for the most part, as I have been watching my cholesterol since January and my brother (also hcv positive and also a treatment success story) gave me pointers on what to avoid regarding the hcv. He and I both figured I had hcv in January, when it was discovered my AST and ALT levels were high. Obviously,we were both right, but my doctor wasn't convinced. It didn't help that an abdominal ultrasound stated my liver was mildly fatty. That can raise the AST and ALT levels as well. But, my doctor gave in about a month ago and I was tested. So, in short, I wasn't that surprised with the results being positive. So, now I'm at a point where I am standing with both gloves on, ready

to take it on. I will keep you all posted as to how I'm doing. Again, I'm very happy this support group (and others like it) are so readily available. Take care,Nick

[Guest guest]

Bobby, I don't know of any relationship between high cholesterol and HCV. In

fact, I have a highly scarred liver (beginning treatment next month), and my

cholesterol is extremely LOW, even though I am quite a bit overweight. But I do

try to stay away from fried food, AND I have been eating Cheerios almost every

morning for 5 yrs now, I'm sure that's what brought it down. My doctor was

astounded.

C

[Guest guest]

Sharon, glad your day went so well. Amazing that you can do all that, it would

take me about 3 days of preparation, I get so tired so easily now. What kind of

dog is your rescue?

C

[Guest guest]

I know several of the neighbors sell parking spots. They get up to $15 nearest the stadium, we're in the $5 area.. I'm not sure I want people parking in my yard, though. -dz-Terry Long <pawpawto3@...> wrote:

Dave around the state fair grounds here> Home oweners set up parking lots in their yards durring the fair. Maybe you could make a few dollars by setting up one in your yard. TerryDave <dhz920@...> wrote:

[Guest guest]

--- In , " kazflowers "

> I've had psoriatic arthritis for ten years. I'm having a hard time

> of things at the moment and am looking for some support from people

> who know what I'm going through.

Hi Kazflowers,

Welcome! Sorry about the rough time you are going thru right now.

We do understand here. Are you working? Trying to care for a

family? Everything is harder for us when we hurt and get TIRED.

It is great to have each other to talk to.

Wishing you less pain,

Marti

[Guest guest]

On Wed, 31 Dec 2003 23:25:49 -0800 (PST), Bob wrote in

<20040101072549.39674.qmail@...>:

>Does anyone know another source of information (other than Dr. - they

want

>an " independent source " ) that I can point my nosy relatives to so that they'll

stop

>bugging me? They keep telling me that I'm crazy to do this, but nothing else

has worked

>and I'm ready to give anything a try.

Show them your results when they are permanent!

BTW I would like to hear about them too. I have been at that point

and I am glad that I risked going with Dr. 's work when time

was a critical issue.

Heidrun Beer

Workgroup for Fundamental Spiritual Research and Mental Training

http://www.sgmt.at

[Guest guest]

> --- In , " kazflowers "

> > I've had psoriatic arthritis for ten years. I'm having a hard

time

> > of things at the moment and am looking for some support from

people

> > who know what I'm going through.

>

> Hi Kazflowers,

>

> Welcome! Sorry about the rough time you are going thru right

now.

> We do understand here. Are you working? Trying to care for a

> family? Everything is harder for us when we hurt and get TIRED.

> It is great to have each other to talk to.

> Wishing you less pain,

> Marti

Hi,

I'm 35 and married with two boys aged 7 and 5. I gave up work to

look after the children with the plan of going back when they

started full time school. I won't be doing that now due to the PA. I

do some work at the school but nothing too difficult. I am very

badly affected in my hands, arms and shoulder at the moment.

I've been having some very down times as a result of the PA and my

Doctor suggested this as a way of help. I do feel better already

talking to people who know exactly what you're talking about.

Although I have a lot of support, they have no idea of what I'm

talking about.

Thanks for the reply,

Kaz x

[Guest guest]

Hello

Oh My Dear Friends !

I hope that when you receive this e-mail that you are

surrounded by God's Love & Protection.

About a year or so ago I met a young man named

at my internist office and we became friends. I

try to encourage him as much as I could each time that

I saw him there or when we spoke on the phone. I didn't

saw him away from the internist office since he was still

living a lifestyle that I have left behind and I didn't want

to expose myself to those scenarios any more. Last month

shared with me that his lab showed 500 cells which I

told him that was not bad at all. With medication he could

live a long time just to hang in there and pray.

My friend killed himself this afternoon and his body was

found in the living room by his roommate when he returned

back from work. He was only 23 years old. My heart aches

so much for him right now. I wish he would have called me;

I would have run to him without hesitation but God will only

know what impulse him to take his life. I'm left with just

my prayers that Our Heavenly Father received him in heaven.

I'm planning to attend his funeral service and hopefully I will

not have a repeat experience from my last funeral service.

Please keep 's family in prayer as they face this difficult

hour.

with a broken heart,

Tony Nunez

[Guest guest]

Oh Tony! What a tragic scenario! How my heart breaks for that family! With

all that you have gone through, it must grieve you that this young man took his

life. Yet, as we know, only God can judge. Please know that I will keep his

family in my prayers. Their hearts have been broken.

God bless you Tony.

Debby

Hello

Oh

My Dear Friends !

I

hope that when you receive this e-mail that you are

surrounded

by God's Love & Protection.

About

a year or so ago I met a young man named

at my internist office and we became friends. I

try

to encourage him as much as I could each time that

I

saw him there or when we spoke on the phone. I didn't

saw

him away from the internist office since he was still

living

a lifestyle that I have left behind and I didn't want

to

expose myself to those scenarios any more. Last month

shared with me that his lab showed 500 cells which I

told

him that was not bad at all. With medication he could

live

a long time just to hang in there and pray.

My

friend killed himself this afternoon and his body was

found

in the living room by his roommate when he returned

back

from work. He was only 23 years old. My heart aches

so

much for him right now. I wish he would have called me;

I

would have run to him without hesitation but God will only

know

what impulse him to take his life. I'm left with just

my

prayers that Our Heavenly Father received him in heaven.

I'm

planning to attend his funeral service and hopefully I will

not

have a repeat experience from my last funeral service.

Please

keep 's family in prayer as they face this difficult

hour.

with

a broken heart,

Tony

Nunez