This and That

[Guest guest]

----- Original Message -----

From: " Estelle Nell " <nell@...>

> I have been lurking on this site for many years, and although I never

respond, I " scan " each e-mail. I have SD and did go the mino route for about

1 year without any significant changes.

This therapy is long term. For most people one year is not long enough to

see " significant changes. " For one scleroderma patient it took 7 years to

reach remission. Her story is on www.rheumatic.org.

Ethel

[Guest guest]

Hi

I was happy to meet you and that you felt you could come out of

lurking.

I know too that the AP does take different lenngths of time for many.

with Alternate day especially.

There are ways as well totinker with the therapy and thats why we

are here to help ypass along what we have learned over the years.

Wishig you the best

Marge

>

> ----- Original Message -----

> From: " Estelle Nell " <nell@i...>

>

>

> > I have been lurking on this site for many years, and although I

never

> respond, I " scan " each e-mail. I have SD and did go the mino route

for about

> 1 year without any significant changes.

>

> This therapy is long term. For most people one year is not long

enough to

> see " significant changes. " For one scleroderma patient it took 7

years to

> reach remission. Her story is on www.rheumatic.org.

>

> Ethel

[Guest guest]

Hi. I read your message about the milk balm being the best thing

you ever found for dry skin. Please give me the low down on what

this is. Both my daughter and my husband suffer from severe,

cracked painful dry hands. My daughter gets raised red scales from

the cold dry weather and her whole top of hand is chapped and sore.

My husband has the driest roughest hands--the palms especially--I

have ever seen. They are unusual. Also the tops of his fingers

split open for no reason and then they really hurt. HELP! Thanks

best wishes, kathy

[Guest guest]

Hi

I normally don't post - but I find the listserve very helpful. Before I ask a

question I wanted to add my experiences in the 'mix'.

Someone asked sometime last week about RA and back pain. I've also had a lot of

lower back pain - even developed a fairly aggressive case of sciatica due to the

inflammation in my back - which threw everything else out of wack. (A lovely

'surprise')

Sara asked about medications and the decision making process- I too was very

cautious about taking the biological disease modifiers. But after seeing X-rays

and thinking about the possibility of long term damage I thought I had 'bite the

bullet' and try to slow down the progression of my disease. I'm a single parent

and I really want to maximize the quality of life with my daughter. I worked

with people living with HIV - so I knew first hand that just because you don't

see problems - doesn't mean that your immune system is 'running amuk.' I've been

on Remicade and Methotrexate since Feb...and while my progress hasn't been as

what I'd hoped it would be - I do have days where I feel 'pretty good.'

I haven't checked the archives to see if this question has been asked before -

so if this is a discussion that's already been had - please forgive me. But I'm

finding that I'm still flaring around my period. (I hope this didn't offend

anyone) And I'm wondering if this is a common experience and/or if anyone else

experienced this. I'm finding that for 7-10 days a month I'm in incredible pain.

Thanks in advance for your feedback.

in IL

[Guest guest]

hey karen, while i wouldn't say i have intense pain (thank goodness!!) i

also find that i have a lot of symptoms just before and during my cycle. where

in il are you? i am by great america

kathy in il

[Guest guest]

hey karen, while i wouldn't say i have intense pain (thank goodness!!) i

also find that i have a lot of symptoms just before and during my cycle. where

in il are you? i am by great america

kathy in il

[Guest guest]

:

I almost posted the same question about flaring around " that time of the

month " .....but thought it was only a coincidence. How freaky is

that???? I too flare for about 7-14 days out of the month, or so it

seems.

So glad you posted.....!

The other

> Hi

>

> I normally don't post - but I find the listserve very helpful. Before I ask

a question I wanted to add my experiences in the 'mix'.

>

> Someone asked sometime last week about RA and back pain. I've

also had a lot of lower back pain - even developed a fairly aggressive

case of sciatica due to the inflammation in my back - which threw

everything else out of wack. (A lovely 'surprise')

>

> Sara asked about medications and the decision making process- I too

was very cautious about taking the biological disease modifiers. But

after seeing X-rays and thinking about the possibility of long term

damage I thought I had 'bite the bullet' and try to slow down the

progression of my disease. I'm a single parent and I really want to

maximize the quality of life with my daughter. I worked with people

living with HIV - so I knew first hand that just because you don't see

problems - doesn't mean that your immune system is 'running amuk.'

I've been on Remicade and Methotrexate since Feb...and while my

progress hasn't been as what I'd hoped it would be - I do have days

where I feel 'pretty good.'

>

> I haven't checked the archives to see if this question has been asked

before - so if this is a discussion that's already been had - please

forgive me. But I'm finding that I'm still flaring around my period. (I hope

this didn't offend anyone) And I'm wondering if this is a common

experience and/or if anyone else experienced this. I'm finding that for 7-

10 days a month I'm in incredible pain.

>

>

> Thanks in advance for your feedback.

>

> in IL

>

>

>

>

>

[Guest guest]

:

I almost posted the same question about flaring around " that time of the

month " .....but thought it was only a coincidence. How freaky is

that???? I too flare for about 7-14 days out of the month, or so it

seems.

So glad you posted.....!

The other

> Hi

>

> I normally don't post - but I find the listserve very helpful. Before I ask

a question I wanted to add my experiences in the 'mix'.

>

> Someone asked sometime last week about RA and back pain. I've

also had a lot of lower back pain - even developed a fairly aggressive

case of sciatica due to the inflammation in my back - which threw

everything else out of wack. (A lovely 'surprise')

>

> Sara asked about medications and the decision making process- I too

was very cautious about taking the biological disease modifiers. But

after seeing X-rays and thinking about the possibility of long term

damage I thought I had 'bite the bullet' and try to slow down the

progression of my disease. I'm a single parent and I really want to

maximize the quality of life with my daughter. I worked with people

living with HIV - so I knew first hand that just because you don't see

problems - doesn't mean that your immune system is 'running amuk.'

I've been on Remicade and Methotrexate since Feb...and while my

progress hasn't been as what I'd hoped it would be - I do have days

where I feel 'pretty good.'

>

> I haven't checked the archives to see if this question has been asked

before - so if this is a discussion that's already been had - please

forgive me. But I'm finding that I'm still flaring around my period. (I hope

this didn't offend anyone) And I'm wondering if this is a common

experience and/or if anyone else experienced this. I'm finding that for 7-

10 days a month I'm in incredible pain.

>

>

> Thanks in advance for your feedback.

>

> in IL

>

>

>

>

>

[Guest guest]

hey about the vit c stuff in the archives are infos from Pam on vit c and not to over do it while on tx messes with tests and too much is not good for the liver and yes have heard about the vit c iv tx just another magic pill lol tx is it Mae

From: Sharon <swarfiel@...> Sent: Wednesday, January 14, 2009 10:02:12 PMSubject: Re: [ ] This and that

Pam and ; your cordyceps went on their way to your homes this morning : )))

Yeah, I agree about not killing the HepC; I take it to help my body fight....like I said, when the body de-fuels and do not have the supplies it needs to fight is when the liver begins to fail. I've seen it in the blood chemistries over and over again. The liver is an incredible organ and will regenerate.. no other organ in the body can do this, feed it and it will keep pluggin' away. toodles...I" m off to work.

-- [ ] This and that

Trying to answer a few......... ... the alternative list Sharon referred to is at: http://health. groups.. com/group/ jovo/ (Again.... one can be on more than one list :-) It is not as active as it used to be but a good place for research. If you join you have access to the archives and can put keywords into the message section and find all those articles. I wish I could take ALA but I break out in a rash. I do take a lot of herbs but I am also not kidding myself that they will kill my Hep C because nothing will do that except interferon and ribavirin. I just hope to feel a little better and perhaps slow my progression. ......... who knows for sure!

Don't forget about GOOGLE! Just go to www.google.com and put in any key words about things you are asking questions about if others don't get back to you right away. A lot of information will come up.

There is a site at http://www.notmilk. com/ that is interesting. I didn't see anything specific about liver disease but I haven't been there in awhile and someone else might run across some info they can share.

I have a Juiceman Juicer that is about 14 years old but I still love it :-) I don't use it as often as I used to but it is a good product. You can probably find a place to buy it by googling.

Also you can probably find a lot of the recipes that way. Here's a couple:

http://www.ezjuicer s.com/recipes. htm

http://www.juicingb ook.com/

http://www.ezjuicer s.com/juiceman. htm

I have a personal friend that did IV Vit C thinking he was going to kill his Hep C........... NOT! Not only did he not kill it but when he tried treatment about a year later his viral load went up during the first three months. That is the first time I ever heard of that! Could the C have caused that? Who knows....... ......... ....

I know MANY people that are geno ones and fours that are MANY YEARS CLEAR now. It is a 50/50 shot. Hepatitis C is a carcinogen. My Vit C friend decided to try treatment rather than get liver cancer. He hopes to try the VX-950 when it comes out. He would have tried daily infergen but he got too busy with some business things. I know many nonresponders that cleared with the daily Infergen.

Keep your glasses half full........ ... do whatever it takes to feel better...... ..... but please don't delude yourself about treatment. Interferon and antivirals are the only things that will kill hepatitis C if you don't clear it on your own.

Peace