Re: Digest Number 2762

January 22, 2003

In a message dated 1/22/03 9:32:05 PM Pacific Standard Time, writes:

From JERRY: Right now it is 6 degrees farenhiet (sp) which is around minus 30 celseus.

My problem is all the frogs loudly practising mating calls outside my door. That's northern California. Eat your heart out. Apple trees have been in blossom for weeks. Daffodils are starting to look old and ratty. And you have icicles on your nose. I lived in downtown Boston for 25 years. And now I DON'T!!!

Harper

From LAYNE: I, too, am on coumadin therapy. Neither my GI or the hepatologist at the transplant center mentioned any problem with taking Imuran and Coumadin. Do you know what section or what page this info is in Dr. Palmer's book? I would like to bring it up with my GI doc.

Layne

LAYNE, if you go to Google and enter Imuran and Coumadin, you'll see many, many sites giving information about the two in combination. I couldn't find just one that told everything you'd want to know, and some were clearly only opinions. One reputable-sounding site said that Imuran may reduce the effectiveness of Coumadin -- or perhaps it was the other way around.

JERRY, my GP is a lovely person. I just hated to spoil her lunch with the lurid details of my innards.

Harper

January 22, 2003

Harper ... I shall remember you with fondness when you... SLIDE INTO THE

SEA.! wise guy.

love jerry

January 23, 2003

In a message dated 1/23/03 12:32:05 AM Eastern Standard Time, writes:

Little people are ones that get pleasure from

belittling some one to make themselves feel more

secure.

Ruth

My mom always said "to belittle is to be little."

Cheryl

January 23, 2003

In a message dated 1/22/2003 9:31:55 PM Pacific Standard Time, writes:

Message: 25

Date: Thu, 23 Jan 2003 00:30:29 -0500 (EST)

From: gefox@...

Subject: Re: Digest Number 2758

Na.na na ..na na. I'm almost 60 (in a month ) and I don't have gray hair

(except in my moustache....I'd shave it off but then I'd get carded...if

I drank)...eat your hearts out. it is all due to good clean living and

taking care of my body. (and no cheap cigars)

love forever young jerry

Dear Forever Young,

Somehow I knew it would be you who still had dark hair - go figure

Amy

February 28, 2005

Beverly, welcome to the group. I have scleroderma and I remember feeling like

you do. I too had a hard time getting out of bed, felt like I lived in the bed.

I know the dark hole you feel. I am getting better everyday now, so I wanted to

send you some encouragement. Please try everyday to think positive, eat

properly, and try to accomplish something that makes you feel good. I cried

alot....and have been blessed with wonderful friends and family. You are not

alone. Remember that. Love, Susie

rheumatic wrote:

There are 10 messages in this issue.

Topics in this digest:

1. I need some feedback.

From: Redfox444@...

2. Re: I need some feedback.

From: " Harald Weiss, Technical Marketing Group "

3. feeling lousy but doing great

From: " D "

4. Re: feeling lousy but doing great

From: " JMerch "

5. RE: ph Paper...thehealthhound!

From: " Harald Weiss, Technical Marketing Group "

6. OT: Fw: [Consumers] Biased -2 vote?

From: " Ken and "

7. Fw: OT: Fw: [Consumers] Biased -2 vote?

From: " Ken and "

8. juice fasting

From: " Mellanie Henschel "

9. Re: RE: ph Paper...thehealthhound!

From: " Harald Weiss, Technical Marketing Group "

10. RE: ph Paper...thehealthhound!

From: " Harald Weiss, Technical Marketing Group "

________________________________________________________________________

Message: 1

Date: Sun, 27 Feb 2005 17:33:18 EST

From: Redfox444@...

Subject: I need some feedback.

Hi Everyone,

I have been diagnosed with RA by my GP and a RA specialist. I want to know

if others have the same problems that I have. For instance, this morning, I

could not get out of bed. I had no muscle power and my joints hurt. I am very

weak. It is difficult for me to get to the bathroom or anywhere else. I know

other people who have RA and lead a normal life than I am. This struck me

down last July and since, I have been in bed, more than up. I know that I need

exercise but I have such weakness.

I am on prenisone (20 mg a day) and 200 MG of Minocin. I have not felt

better on the Minocin since I started taking it. I don't want to be on prenisone

but at this point, I can't do without it.

Does anybody have any suggestions? I think that I might have Fibromyalgia.

I am not sure if maybe the doctors haven't completely diagnosed all of my

problems. I belong to Kaiser and need to know what I can do next to get help. My

GP, saw me last Thursday and was shocked that I can't walk without an aid of

a walker since my last visit in December 2004. He is sending me to physical

therapy.

I will appreciate any input. I am new on this site and see that others have

learned a lot about their illness. I am hoping that I can learn more about RA

and other related illnesses.

Thank you.

Beverly (BJ)

________________________________________________________________________

Message: 2

Date: Sun, 27 Feb 2005 16:51:19 -0800

From: " Harald Weiss, Technical Marketing Group "

Subject: Re: I need some feedback.

Beverly,

What you have may be polymyositis, a rare disease.

See http://www.arc.org.uk/about_arth/booklets/6009/6009.htm

" Polymyositis affects mainly the large muscles of the body, such as those

around the shoulders, hips, and thighs. If you suffer from it you may have

difficulty climbing stairs, getting up from low chairs, and getting in and

out of the bath. Your muscles may feel weak and very tired, so that tasks

that are normally easy prove to be exhausting. You may also feel pain in

your muscles, known as myalgia, and your inflamed muscles may be tender to

the touch. People with polymyositis may feel generally unwell (malaise),

and experience weight loss and night sweats. "

Also see

http://www.ninds.nih.gov/disorders/polymyositis/polymyositis.htm

http://www.medicinenet.com/polymyositis/article.htm

http://www.arc.org.uk/about_arth/booklets/6009/6009.htm

http://www.mayoclinic.com/invoke.cfm?id=DS00334

Doing a www.google.com search on the word polymyositis will bring up

125,000 pages, so you have a lot of information to read up on.

What you have may may also be fibromyalgia, a more common disease. The

above reference http://www.arc.org.uk/about_arth/booklets/6009/6009.htm

states:

" Fibromyalgia (sometimes called FMS) produces very similar muscle pain and

fatigue. However, fibromyalgia is not associated with true inflammation in

the muscles. The blood tests are therefore normal. "

By the way, there is currently no easy clinical tests for fibromyalgia.

Fibromyalgia is what is left if your muscles, tendons and joints hurt, and

all other diagnoses have been exhausted. The phrase Rheumatoid arthritis

(RA) primarily refers to inflammation of joints, and you have more than

that. However, these rheumatic diseases may all be related and be caused by

the same microorganisms.

Your next step should be to visit www.fibrofix.com. I would also

immediately test the pH level (acidity) of my saliva. If it is below 6.4, I

would take dietary steps to raise it above that level. Anne, the author of

the fibrofix website, also takes a lot of calcium carbonate in the forms of

TUMS tablets.

To test the pH of my saliva, I purchased a roll of pH paper from

http://thehealthhound.com/ph.html. My research indicated that their

" Hydrion Vivid 5.5 to 8.0 " is the best pH (or litmus) paper around for

saliva testing, since it can resolve 0.2 pH units. Most other papers can

only resolve 0.5 or 1.0 pH units -- less precise. Cost is $7.99 for a roll

with dispenser plus $4.50 for shipping in the USA. Refills (less the

plastic dispenser) are less. To measure pH, simply place the a small strip

of pH paper in your saliva, and compare the resulting color to the color

samples on the back of the dispenser roll. The test results are

instantaneous. No outside lab is required.

Sincerely, Harald

At 05:33 PM 2/27/2005 -0500, you wrote:

>Hi Everyone,

>

>I have been diagnosed with RA by my GP and a RA specialist. I want to know

>if others have the same problems that I have. For instance, this morning, I

>could not get out of bed. I had no muscle power and my joints hurt. I am

>very

>weak. It is difficult for me to get to the bathroom or anywhere else. I

>know

>other people who have RA and lead a normal life than I am. This struck me

>down last July and since, I have been in bed, more than up. I know that I

>need

>exercise but I have such weakness.

>

>I am on prednisone (20 mg a day) and 200 MG of Minocin. I have not felt

>better on the Minocin since I started taking it. I don't want to be on

>prednisone

>but at this point, I can't do without it.

>

>Does anybody have any suggestions? I think that I might have Fibromyalgia.

>I am not sure if maybe the doctors haven't completely diagnosed all of my

>problems. I belong to Kaiser and need to know what I can do next to get

>help. My

>GP, saw me last Thursday and was shocked that I can't walk without an aid of

>a walker since my last visit in December 2004. He is sending me to physical

>therapy.

>

>I will appreciate any input. I am new on this site and see that others have

>learned a lot about their illness. I am hoping that I can learn more

>about RA

>and other related illnesses.

>

>Thank you.

>

>Beverly (BJ)

________________________________________________________________________

Message: 3

Date: Sun, 27 Feb 2005 17:24:33 -0800

From: " D "

Subject: feeling lousy but doing great

I only slept three hours last night and I'm going to take a nap. The

prednisone I'm on because of pericardial effusion is making my blood sugar

levels to go spiking up between 250 and as high as 364. It gives me the

sweats and lack of sleep makes it feel twice as lousy. The 60 mgs of

prednisone has taken away all the joint pain but I'd still rather deal with

some pain instead of how I feel just now. I sure hope my heart inflammation

goes down and stays down. The nurse says one lung still has pneumonia. I

took zithromax for one week and she says it will act for another week. It

will be 2 weeks the day after tomorrow and I really think they will have to

do more.

My doctor is suggesting Humira because he says it will help my RA and my

heart. The heck with that!!

I'm reading Dr. Mercola's book and I'm going to throw out every food that he

warns about. Somehow I've got to exist on fresh vegetables and fruits and

the right protein. I've got to make changes or I won't last; I believe the

solution will be the food plan Dr. Mercola is using now. That involves

healthy food. I'd never commit suicide but some of the things I've been

doing have gotten too sloppy. I've really gone into a decline this past

year. I got to sick to even cook.

I've been fighting the feeling of being trapped out here in Canby because

they opted out of the regional transportation system. Our local state rep

introduced legislation to allow for opting out as long as they kept

handicapped services at the same level.

They signed contracts, got grants, and promised to give us equal or better

public transportation. Able bodied passengers get very good service now but

from the get go the handicapped service has been inferior to what we used to

have. I am completely dependent on it and they made it so I have to stay

home after dark, every Sunday, and every holiday.

We have to go from the new system to connect to the regional system. It is

grueling to go into Portland and sometimes I'm in transit two hours each

direction because the meet ups are not seamless. This means a two hour trip

to the Zoo with my grandson takes us six hours. It is hard enough to go

places with out the extra hassle.

I'm the only one out here who has tried to get things set right and this

last year it just beat me down to the point I figured I'd be found dead in

my house , which almost happened two weeks. If I had died then the

handicapped bus service would have slid down to what it first was without me

bird dogging it.

I became a victim and that was not my nature. Then a couple weeks ago I was

shut up in my house dying, my kidneys were shutting down, my heart became

enflamed, and I had double pneumonia. I was existing on pain medications

and the last couple days, before going in the hospital I hadn't been able to

pee, or even dial my daughter's phone number. I'm not exaggerating--I was

on my way out and I had no more energy to fight anything.

I swear that it was God who led me to dial 911. The firemen came and I was

in a toxic haze. I was taken to the hospital. Four days later I came home

scared to death to be alone. I've got oxygen tanks to breathe with because

the slightest exertion sends my heart into high gear and I sweat like a pig.

It feels so rank. The only time I've been this sick was 20 years ago when I

had toxic shock syndrome. I am not snapping back as quickly as I did then.

Meanwhile, during my sickest days, something good was put into motion. I

had gone to two handicapped advocacy meetings to tell people what was going

on out here. I started sending copies of the email I was sending to the

transit director for Canby CAT bus system. Until then I would get a state

or national elected person to call the office and that would make some

little thing change but I have still been trapped for these past two years.

Even there the director would think up another stupid idea and drop it on

us. It just wasn't working for me.

Well, a nice man in a wheelchair took copies of my emails and sent them all

over the state and to Washington D.C. demanding an investigation. The you

know what has hit the fan and there are a lot of people out here who are

really mad at me; but the truth will come out. There will always be people

who don't want to pay for public transportation services for handicapped;

but now we have protection under the Americans with Disabilities act.

They are going to have to explain the grant money that they got under false

pretenses. They had promised " equal or better " paratransport. All we got

were cuts and it has made it harder and harder to live independently. My

life got smaller and smaller. I tried to stay sane through prayer and doing

arts and crafts. I was trapped in my house talking to my cats. I do love

my cats but I started to realize I was a prisoner and it was only going to

get worse.

If it takes my last breath I will get this changed. This worm has turned

and this mess is getting stirred up. When all the blame and excuses are

finished we will have a better system out here and people who use the system

will be able to live in their own homes. I swore I'd stay out of politics.

I did for almost 19 years. Now that nice man in the wheelchair, the one who

is demanding investigations, lit a fire under me. I am back in politics so

we can have the same level of service that was available to us until they

made all the selfish changes. The ironic thing is that a better system will

actually save money.

I'm really not cut out to be anyone's victim no matter how poor my health is

just now.

I hope you will pray for us.

in Oregon

________________________________________________________________________

Message: 4

Date: Sun, 27 Feb 2005 22:41:25 -0800

From: " JMerch "

Subject: Re: feeling lousy but doing great

Hi, :

What you have been through is terrible, and I'm glad that you are getting the

treatment that you need at last.

I hope that they will be able to determine what organism caused the pneumonia

(viral or bacterial and then which _ pneumoniae). And I hope also that you are

tested for the HLA B27 antigen; pericarditis is more common in those of us with

AS.

But, doing the Mercola diet is very important--grains are a very bad thing for

many people, but poison for anyone with a rheumatic disease (and I was a

vegetarian for 22 years; damage to prove it!). It takes a real heap of will to

get well, but sure beats the options!

Thank You, for the work you are doing on behalf of our more infirm fellows.

Best to You, both in health and happiness,

rheumatic feeling lousy but doing great