Re: Let's get back on track

September 22, 2001

Robynn,

I have to apologize to you and the group. I know better than to jump into a

political conversation on here but I did it anyway. :-( Oh well...........

I do agree with your post. Everyone has felt the need to vent, in one way or

another, and tempers seem to be a little volatile right now, which is totally

understandable. We're all angry at the terrorists and since we can't vent to

them, we're letting loose in other ways. I haven't been sleeping well, have had

some major headaches again and I've been depressed. I know none of these are

Lyme related ... all stress, worry, etc. about our country.

So, I will post on the Off Topic list if I have something non-Lyme to say. And

I hope everyone else will too.

Jean

October 19, 2006

Thank you!

In every list I've moderated or administered, there have been those

who do not respect the validity of opposing or even slightly

different opinions. We have a painful physical condition (or two or

three or more) and can be a bit irritable at times. I love it when

an absolute, emphatic statement of 'fact' is challenged in the tone

you use to explain that the statement may be erroneous or downright

wrong.

Because of all the fraud, false promises and wrong diagnoses and

treatments many of us have received over the years, your vigilance is

very much appreciated. ;-)

IMHO, NOBODY should complain when ANYONE offers an alternate view of

a drug/diet/treatment/diagnostic tool/etc as long as that one thing

is not touted as the be all end all only thing forever...

I dare say, none of us had the same experiences leading up to the

diagnosis and our treatments...or even coping. New 'facts' are

discovered every day. Old " facts' are being overturned just as often.

The main thing I can think of that is absolutely true is that most of

us experience PAIN.

I'm always open to NEWS.

October 19, 2006

AMEN!!!

I always appreciate Kathy F's opinion and advice because I know she has been

down the same road I have been. Also, from what I read of your posts, I am glad

to have the benefit of your professional as well as your personal insight.

The first rheumy I went to with PA nearly blew my head off when I mentioned

taking some supplements. His answer and I quote, " None of these over the

counter supplements have been tested by the FDA and we do not know how they will

react with the methotrexate and prednisone you are taking! NO WAY!!! "

My present rheumy , when asked about toxins and detoxins, laughed my out of his

office. I continue to research and make up my own mind. So far I have to

agree with my rheummies.

Janet in Ca

-------------- Original message --------------

From: " trueadelan " <adc1979@...>

> Thank you!

>

> In every list I've moderated or administered, there have been those

> who do not respect the validity of opposing or even slightly

> different opinions. We have a painful physical condition (or two or

> three or more) and can be a bit irritable at times. I love it when

> an absolute, emphatic statement of 'fact' is challenged in the tone

> you use to explain that the statement may be erroneous or downright

> wrong.

>

October 20, 2006

Hello all Especially you Kathy and Betz!

I have just gotten back on line, today tonight

which ever, my point being I have missed all the

messages that have been posted. As most of you know my

sister is a paranoid skitzo and she had an episode

last week that ended me in the hospital with a

concussion and a beautiful shade of purple eye shadow

on my left eye. Of course I reported her to the

s Center which is the mental health clinic for

people that can not afford it. She is now in a more

controlled environment. She had everything turned off

meaning ele. telephone, cable imposing herself as me.

She knows everything about me SS # Dl# everything so I

had to come up with a way to prove I was really me and

then we made pass words so that she can't do it again.

So please beware it can happen to you, like it did me,

identity theft.

So I am trying to get caught up with everything since

it was all deleted from my email. Kathy I read

something about a diet that could help? I would love

to have the diet or the web site addy. Betz so very

glad to hear you are doing better, I know you can

relate to my story that is why your name is mention

also cause I love ya. Kathy don't feel left out I love

and respect you also. Your opinion means very much to

me.Even tho I have different ideas than you I still

respect yours.

Would like for everyone to know that I haven't had a

flare up in about a month! Still have a few aches and

pains but nothing really big. I have cut out a lot of

STRESS out of my life. You were right about stress

Kathy it does make it worse.

I would like to STRESS how much I missed reading

this email daily from here. I have missed reading

about everyone. Carla, Shaun, Sherry, Marvin, Brent,

Mike, there are a few other women out there but brain

fog I think will always be a part of my life, so

forgive me you know who you are let me know how all of

you are doing. I didn't realize how much this group

meant to me until I couldn't read it every day.

All of you lift up my spirits and help me live life,

and I have missed YOU ALL!!

Sorry that this is not too much on the subject of PA

just had to let you know how I felt.

I really would like to know if changing diets or

adding to does help I am willing to give it a try. I

was told that too much Vit C isn't good because it

helps build the immune system which is what we don't

want to happen. I would like to know what folic acid

does? My Rheumy hasn't said anything about it.

I am glad to be back and hope to hear from ya'll

soon. Sharon

[Editor's Note; Sharon, sorry to hear that you've been through so much lately.

How utterly awful but it is good that your sister is where she must be and that

you have now found a way to protect your identity going forward. One suggestion

to everyone about passwords: make sure you pick a word with numbers and symbols

that have nothing to do with you. For example, when you get in your car today

and see an ad and it's for Louie's Restaurant, " Louies " could be the core of

your password. Then pick a number that also doesn't mean anything to you (a

friend's area code perhaps) and then pick a symbol (e.g #, *, !, $ etc.). There

is no way your sister or anyone else would guess that your password would be

" Louies212$ " . Too many people use the name of pet or a child or their

anniversary or something that is easy to guess if someone knows you. By picking

a password that has nothing to do with you, it will be a lot harder to crack.

Separately, we do not have a special diet, Sharon. We are, however, encouraging

our members to replace one unhealthy food in their diet with one healthy food.

Just one. We are also encouraging our members who are a bit overweight to set

aside a small amount of food at every meal and simply not eat it. Diets often

throw people for a loop because they can't stick with them so if we try to do

things one step at a time, it may be easier. In any event, it's good to have

you back. Kathy F.]

October 20, 2006

>

> The first rheumy I went to with PA nearly blew my head off when I

mentioned taking some supplements. His answer and I quote, " None of

these over the counter supplements have been tested by the FDA and we

do not know how they will react with the methotrexate and prednisone

you are taking! NO WAY!!! "

> My present rheumy , when asked about toxins and detoxins, laughed my

out of his office. I continue to research and make up my own mind.

So far I have to agree with my rheummies.

>

> Janet in Ca

>

Janet! I can relate to that for sure. My first rheumy told me that my

pain was due to a severely emotional reaction to my 'skin problem' and

Rx'd Zoloft. I never went back to him. Yup, I research, try, check

out..whatever I can for relief. I've made soem really stooooopid

mistakes but, what the heck? It's better than NOT trying.

We all have a lot to learn from each other...

[Editor's Note: There are lousy doctors, there are crazy doctors, there are

lazy doctors, there are doctors that aren't very bright, there are doctors who

are quacks and there are, fortunately, some fantastic doctors. Even if you have

a fantastic doctor, you are only one of several hundred (maybe thousands) of

patients this doctor sees which is why YOU must be the number one person

responsible for your care. The internet has made independent research a great

deal easier. If something doesn't make sense question it; if something does

make sense, question that, too. Kathy F.]

October 20, 2006

Yowza Honey! I had one of those eyes once from my sister too....I know

the feeling there. You've had quite the time but the tone of your post

seemed to be one of an over-comer. You are woman...hear you roar! My

sister was in the hospital during the spring when I did not hear from

her. We are on the phone almost daily now as we were before. Her stay

was short this time and she put herself there so she is coming to a

place in her life where she can recognize the signs that the meds are

not doing their thing. It takes a long time though to get there...for

her....almost 11 years now since her first hospitalization. I'm

thinking of you and your sister....keeping you both in my prayers and

remember that God has His fingerprints all over you both! Glad that you

are not flaring. That's a gift. Welcome back! Love Betz

October 20, 2006

Kathy,

Thank you so much for the info you gave me ......but

you must have had brain fog I asked about folic acid

or I think I did......and how it helps. Also I want to

know what you have added or taken away from your diet.

I am 180 lbs. and feel like a blimp, so I would really

like to lose some weight. I have cut back on the

amount that I eat and I have replaced fruits instead

of candy, have done this for a month and still weigh

the same so now I am wondering if there is something I

need to take out of my diet. I know exercise!!! That

is my next step. I got an Ab lounger and I have

started working on it I am up to 30 a day. Pat me on

the back because I do not like exercise!!!

TO all new members I welcome you, you have found a

wonderful group and even though we don't always agree

we agree to disagree. I am sorry that you had to find

us but glad that you are here. There are wonderful

people here and you will feel the love and support

from us all. Sharon

[Editor's Note: Honestly, Sharon, I see thousands of posts a year so I don't

remember who asked about folic acid and it wouldn't matter to me in any case. I

know what it is like to live with brain fog. Sharon, I don't have a magic

formula regarding diet. I have personally chosen to cut down significantly on

red meat - I now have no more than two red meat meals a month. I have replaced

red meat with vegetarian meals or chicken. I have also suggested that instead

of going on a big sacrificial diet which most people find difficult to keep,

that people who want to lose weight OR gain weight more slowly, should set aside

1/4 of the food on their plate (every plate, including snacks) and simply not

eat it. A 25% calorie reduction may not be enough for you to lose weight, but

once you get used to eating 25% less, you can easily up the amount to 33% less.

A one third reduction in calories for all meals is significant. I have also

started swimming 3 days a week at the local YMCA. Taken together, these sorts

of things will not cure my PA. I have permanent damage in several places and

nothing I do can undo that. However, the better I eat, the better shape my body

is in to help me in my fight against PA. I was too exhausted to exercise when I

was working, but I have made it a priority now that I've retired and instead of

complaining that there is nothing I can do to lose weight, I am eating less.

This is all common sense stuff - no magic here - so I'm confident you can find

things that will work for you over time. Kathy F.]

October 20, 2006

In a message dated 10/20/2006 1:47:00 P.M. Pacific Daylight Time,

denise05775@... writes:

my doc told me i had to take the folic acid for the mouth sores i would get

while taking the mtx. i guess it is well known because the pharmacy and my

other doctors are always asking me if im still taking and to not go off of it.

[Editor's Note: I think almost all of us who are on MTX also take folic

acid. I know I do. Kathy F.]

There is also some data showing that people with PA lack the proper amount

of folic acid...my old rheumie told me this. My old PCP also told me that in

general the American population doesn't get as much folate naturally as we

should. So even though I've never been on MTX, I was told to take 1600mcg (4

of the otc pills) of folic acid every day. When I first started taking it I

thought it helped quite a bit with the fatigue...

October 21, 2006

This is so true, not that many are FDA approved or approved in any

way for that matter. Are they GMP approved, are they lab tested,

are they listed on your PDR that your doctor refers to? Most of them

too, do not have in them listed on the label correctly as to what

ingredients you are getting is actually in there. A lot are not

correct. I do know a Doctor personally though and he told me that

when in training they take only minutes of training and only cover

not more than the name of nutritional supplements. Just basically go

over that there is such a thing, not what they are about and/or what

they can do. Therefore they are not going to be in favor of them.

They are out there for the $ this is the way they get paid and get

this by supporting your druggist through giving you a prescription.

They don't look at the underlying cause, only to try and diagnose

then hand out that prescription. (sorry, nutritional supplements are

the only thing that helped me any). What are nutritional

supplements? Can they be taken with drugs? There are very few drugs

that is not wise to take with. If you can eat, you can take. That

is all they are, the basic supplements we would be getting from our

foods if that were possible, but isn't. Eg: To get the minimum daily

required amount of vit E you would need to eat 33 heads of spinach a

day. This is just one example...sorry not my choice of food to be

eating. ) smile. There isn't very many Doctors that will believe

in supplementating your diet, but they are turning in that direction

as they are finding so many drugs leave you with more problems than

the condition itself.

This is just my view.

juliehope@...

http://www.4betrhealth.com

[Editor Note: The NIH, the WHO and most doctors believe that most people (not

all, most) would get virtually all the nutrition they need through a healthy,

balanced diet. Kathy F.]

> >

> > The first rheumy I went to with PA nearly blew my head off when I

> mentioned taking some supplements. His answer and I quote, " None

of

> these over the counter supplements have been tested by the FDA and

we

> do not know how they will react with the methotrexate and

prednisone

> you are taking! NO WAY!!! "

> > My present rheumy , when asked about toxins and detoxins,

laughed my

> out of his office. I continue to research and make up my own

mind.

> So far I have to agree with my rheummies.

> >

> > Janet in Ca

> >

> Janet! I can relate to that for sure. My first rheumy told me

that my

> pain was due to a severely emotional reaction to my 'skin problem'

and

> Rx'd Zoloft. I never went back to him. Yup, I research, try,

check

> out..whatever I can for relief. I've made soem really stooooopid

> mistakes but, what the heck? It's better than NOT trying.

>

> We all have a lot to learn from each other...

>

> [Editor's Note: There are lousy doctors, there are crazy doctors,

there are lazy doctors, there are doctors that aren't very bright,

there are doctors who are quacks and there are, fortunately, some

fantastic doctors. Even if you have a fantastic doctor, you are

only one of several hundred (maybe thousands) of patients this

doctor sees which is why YOU must be the number one person

responsible for your care. The internet has made independent

research a great deal easier. If something doesn't make sense

question it; if something does make sense, question that, too.

Kathy F.]

>

October 21, 2006

so many of our drugs are actually derived originally from plants , it is a

little scary to me to jump in blindly taking supplements w/o having the

interactions tested scientifically. jmho- I do take a multivitamin and try to

eat foods that have not been treated w antibiotics etc

here is a short list of some of them

http://chemistry.about.com/library/weekly/aa061403a.htm

Greg

[ ] Re: Let's get back on track