Re: Digest Number 419

[Guest guest]

In a message dated 10/31/99 12:01:42 PM Eastern Standard Time, esp@...

writes:

<< www.ncf.net.org/? >>

aha! Caught the problem here!! It's

http://www.ncf-net.org

and that dash, instead of the dot, may do it for you!

[Guest guest]

Has anyone else had difficulty logging on to the new NCF web site run by

the National CFIDS Foundation at www.ncf.net.org/? I can't seem to log

on though I have no trouble logging on to any other sites.

I look forward to hearing a clarification on whether or not Cheney has

discontinued use of Immunocal/Immunoplus. -Beth

[Guest guest]

Geri,

How sad about your brother. I am very sorry. You are a very strong and

couragous woman. I sincerely mean it. Charlene

[Guest guest]

Geri The story about your brother Bill was very touching.I feel really

sad for you you must miss him alot.

Pa.

[Guest guest]

SHELLI

CALL THE OFFICE OF YOUR STATE'S INSURANCE COMMISSIONER AND SEE IF THEY CAN

HELP YOU. MANY STATES HAVE ADMINISTRATIVE REMEDIES THAT ARE USED TO MONITOR

AND REGULATE INSURANCE COMPANIES

IT IS PROBABLY YOUR ONLY RECOURSE INTO FIGHTING THE INSURANCE DRAGON - JUST

HOPE ST GEORGE WORKS FOR THE STATE

[Guest guest]

Does anyone out there know if the super nu thera product increases the seizure?. Everytime I try it on my 9 year old epileptic daughter her seizures seem to increase.

Any infoomation would be helpful

Thanks

[Guest guest]

so than don't do it. any thing you give them should be run by your neuro first. if it has ginko than that probably is the cause.

julie

[Guest guest]

Hi everyone;

I have had JRA since I was nine years old. Went into remission when I was

twelve; it surfaced again when I was thirty-six and went into remission again

when I was forty. When I came out of remission nearly five years ago, I felt

like I wanted to die. It hit every joint in my body. I was put on plaquinel,

MTX, sulfasalizine and vicodin. Slowly over the years, my body started to

reject each one except for MTX and vicodin. Every couple of months, I was

getting steriod injections into the joints and was put on Predisone. Those

helped when they gave them to me. Then I went on Remicaide; I failed on that one

as well. So, the doctors took me off ALL my medications almost two months ago.

They havent refilled my vicodin or oxycodon. I rarely take any painkillers

unless the pain is over 8 plus on the pain scale. I have an extremely high pain

tolerancy so if I am that high, it is usually 15 plus for most people. I have

finally given up because I am sick of hurting 24 hours/7 days a week. My

husband ( God bless the ground he walks on) is a nurse and understands my

limitations and pain.

I used to show horses in the Hunter/Jumper class. I used to be be able to hula.

I also play classical and Celtic harp, and work in stained glass. I am not used

to having limitations. I am not allowed to lift anything more than four pounds,

no pushing, pulling, no gardening or (yay) vaccuming. I wear braces on my hands

and wrists 24/7 to support them and I walk with a cane.

I have opted out for orthopedic surgery. The surgeon is going to do microscopic

remove the old inflammed tissue from and around my right hand, wrist, forearm

and shoulder. New healthy tissue will grow back and protect the joints that

have been eaten by the RA. I will be put on Enbril or another injection type RA

med to help (hopefully) slow down this terrible disease.

I dont recommend anyone to rush out to have this procedure done. I will be in

rehab for three to six months afterwards. This is the last resort measure for me

and for anyone else thinking about having this done.

As for the " Fear Factor " of MTX, Remicaide or other high risk medications the

doctors are prescribing to thier patients: what is worse? Living with pain,

misery, extreme limitations and depression..OR..opt out to take the medications

no matter what drastic long term side effects they may have on your system.

Every prescription and non-prescription has side effects, including taking an

Advil or Tylenol.

I will and try ANYTHING the doctors recommend at this point; including invasive

procedures. My health and independence is valuable to me. I want to live instead

of sitting on the sidelines watching others do it. I want to continue working

till I am seventy-five years old, if God grants me my wish to do so. Living with

RA or any form of arthritis isnt easy. It will either make your will to live

stronger or literally cut you to your knees. So, don't give up and not take the

medicatons the doctors prescribe to you. They are so well worth the risks. Live

for your family, friends and most of all YOURSELF! My prayers are with everyone

out there that has arthritis and thier families that support them as well.

Take care everyone and Be safe..

Anne

[Guest guest]

God Bless you Anne......keeping you in my thoughts and prayers!

Sandy

From: MeInPDX@... Reply-Rheumatoid Arthritis Rheumatoid Arthritis Subject: Re: Digest Number 419 Date: Mon, 21 Jul 2003 14:46:32 -0400

Hi everyone;

I have had JRA since I was nine years old. Went into remission when I was twelve; it surfaced again when I was thirty-six and went into remission again when I was forty. When I came out of remission nearly five years ago, I felt like I wanted to die. It hit every joint in my body. I was put on plaquinel, MTX, sulfasalizine and vicodin. Slowly over the years, my body started to reject each one except for MTX and vicodin. Every couple of months, I was getting steriod injections into the joints and was put on Predisone. Those helped when they gave them to me. Then I went on Remicaide; I failed on that one as well. So, the doctors took me off ALL my medications almost two months ago. They havent refilled my vicodin or oxycodon. I rarely take any painkillers unless the pain is over 8 plus on the pain scale. I have an extremely high pain tolerancy so if I am that high, it is usually 15 plus for most people. I have finally given up because I am sick of hurting 24 hours/7 days a week. My husband ( God bless the ground he walks on) is a nurse and understands my limitations and pain.

I used to show horses in the Hunter/Jumper class. I used to be be able to hula. I also play classical and Celtic harp, and work in stained glass. I am not used to having limitations. I am not allowed to lift anything more than four pounds, no pushing, pulling, no gardening or (yay) vaccuming. I wear braces on my hands and wrists 24/7 to support them and I walk with a cane.

I have opted out for orthopedic surgery. The surgeon is going to do microscopic remove the old inflammed tissue from and around my right hand, wrist, forearm and shoulder. New healthy tissue will grow back and protect the joints that have been eaten by the RA. I will be put on Enbril or another injection type RA med to help (hopefully) slow down this terrible disease.

I dont recommend anyone to rush out to have this procedure done. I will be in rehab for three to six months afterwards. This is the last resort measure for me and for anyone else thinking about having this done.

As for the "Fear Factor" of MTX, Remicaide or other high risk medications the doctors are prescribing to thier patients: what is worse? Living with pain, misery, extreme limitations and depression..OR..opt out to take the medications no matter what drastic long term side effects they may have on your system. Every prescription and non-prescription has side effects, including taking an Advil or Tylenol.

I will and try ANYTHING the doctors recommend at this point; including invasive procedures. My health and independence is valuable to me. I want to live instead of sitting on the sidelines watching others do it. I want to continue working till I am seventy-five years old, if God grants me my wish to do so. Living with RA or any form of arthritis isnt easy. It will either make your will to live stronger or literally cut you to your knees. So, don't give up and not take the medicatons the doctors prescribe to you. They are so well worth the risks. Live for your family, friends and most of all YOURSELF! My prayers are with everyone out there that has arthritis and thier families that support them as well.

Take care everyone and Be safe.. Anne

[Guest guest]

Dear Chonette,

Thanks for your sharing and for not writing me off as a quack... not an uncommon

response. I agree about the sweet things. At optimum health, everyone with

cancer or other healing opportunities and certainly diabestes or hypoglycemia is

encouraged to do their 'hypo' diet, which excludes carrots, beets, jicama, corn

(keep in mind that the diet is all raw so of course refined anything is already

excluded and potatoes, dairy, etc ...) and all fruits (except tomato and

avocado). I certainly felt great and it makes a lot of sense to me that cancer

cells, like other cells, just gobble up easy sugars.

The wheatgrass I generally see as like taking a multi vitamin/mineral only in a

easy to assimilate form (since so many other supplements end up in the toilet).

I wish someone would actually study these things in a real way that the medical

community would recognize ... then maybe instead of a $5000 chemo treatment, I

could have the option of trying the Optimum Health Institue for a few months

instead. Less invasive, cheaper, and you actually feel better and stronger

afterwards.

I've been a very health conscious person since college ... worked in health food

stores a lot back in the day .. and read everything about nutrition I could get

my hands on... so that is my bias and inclination. You are what you eat has

alwasy made sense to me.

What's your cookbook?

Thanks again, and take care!