Re: Digest Number 985

[Guest guest]

Hi, ,

>severe IgA deficiency (my body produces no detectable IgA. tells

>me this would keep me out of the official CDC criteria for CFS. I'm still

>trying to understand that).

What he means is that you have another identified disorder - CFIDS dx

requires that there not be another identified disorder that would explain

the fatigue etc.

How useful this info is is questionable - there is no more treatment for low

IgA than for CFIDS. Has he discussed the possibility of IVIG treatments for

you? That would be the standard treatment for low IgG.

Jerry

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

I can't figure out how he/she could get signed up without going thru some web

site like rhuematic.org that would have explained what the group is. Can you

just subscribe to these lists without knowing what they are about or

connected to?

M.

[Guest guest]

>

> ________________________________________________________________________

> ________________________________________________________________________

>

> Message: 3

> Date: Fri, 29 Sep 2000 06:04:32 -0500

> From: Trickey <jrtrick@...>

> Subject: Re: RE: son newly diagnosed arthritis

>

> Hi everyone,

> I don't usually jump in on this sort of thing, but sorry, I just can't

> help myself this time. This is a support group. It has a definate theme-

> antibiotic therapy. It's what I decided to go with after much thought

> and consideration, not to mention bad experience with conventional

> medicine. (I don't really appreciate the 'western' medicine reference.)

> I don't think being told what I have based my whole treatment on is a

> " little conceptualization " and just how do you know that the antibiotics

> I'm on are going to " backfire " ? Just what does that mean, Adriel?

> Nevermind, I don't really want an answer from someone as obviously

> uninformed about it as yourself. , I too appreciate others opinions

> and input. The people here have helped me immeasurably, but this is

> bashing what we are all about and I don't come here for that. We are

> here because the one thing we do agree on is that this works. I'm not

> going to do a " little dance " as he so sarcastically put it, if Adriel

> leaves... I hope he becomes " enlightened " . Delusions ARE sad.. even if

> they are his delusions. Much love...... T.

Hi group:

I don't usually don't jump in on this sort of thing either, but I have to

say my heart hurt for Adriel, even though he/she could have been much more

diplomatic.

As Adriel said, he/she didn't realize this group was primarily devoted to

antibiotic therapy. It's easy to see why that would happen. Much of the

recent discussion, for example, has been devoted to Hulda 's zappers

and the proper recipe for a cider vinegar remedy. NOT THAT THERE IS ANYTHING

WRONG WITH THAT.

But you can see how someone might get confused if they were suffering brain

fog and subscribed without really paying attention to what the group is

about. If you read the messages, many of them don't deal with antibiotics at

all.

I felt sorry that Adriel, obviously a person who is suffering greatly, was

basically told to love it or leave it.

I have a question: Is the AP a treatment or a religion?

Rhonda

[Guest guest]

Rhonda,

Just so you know, I also feel badly for Adriel but the reason I felt

compelled to step in and make my comments was because we had a question

from a worried mom looking for help for her son and I felt strongly that

Adriel's incorrect statements could be extremely confusing for this

mom. If you reread my posts, you will note that I was at no time rude,

I just pointed out the inaccuracies of the statements and I at no time

suggested that Adriel leave the group. In fact, quite the contrary.

You might also feel better knowing that since Adriel left, we have

corresponded privately, I again let him/her know that you don't need to

be on the AP to subscribe to this site, you can definitely be on it to

check out our discussions on alternatives as well, but that if someone

does get on here spouting incorrect information on this treatment, they

have to expect to be challenged. This time, the message was received

much better and Adriel apologized to me and I certainly let him/her know

that I in no way meant to upset him/her, I just wanted to clear up the

inaccuracies. And, no, this treatment is not a religion but you have to

remember that many of us have had to wage war on the outside to get the

correct word out on this treatment and dispel the fallacies in order to

get the treatment we need. In seems to be working (getting the word

out, I mean) because more and more " respectable " medical establishments

are finally listing it as a valid, recognized treatment so it is

upsetting to see some of the old myths popping up in posts to our own

group. When I see that happening, sorry, but I feel compelled to dispel

them.

Hugs,

a Peden

Rhonda wrote:

>

> Hi group:

> I don't usually don't jump in on this sort of thing either, but I have to say

my heart hurt for Adriel, even though he/she could have been much more

diplomatic. As Adriel said, he/she didn't realize this group was primarily

devoted to antibiotic therapy...But you can see how someone might get confused

if they were suffering brain fog and subscribed without really paying attention

to what the group is about. If you read the messages, many of them don't deal

with antibiotics at

all. I felt sorry that Adriel, obviously a person who is suffering

greatly, was basically told to love it or leave it. I have a question:

Is the AP a treatment or a religion?...

[Guest guest]

> I have a question: Is the AP a treatment or a religion?

Well, when you're facing pretty negative reception of the treatment from

many mainstream sources, and also getting negative reception from a lot of

the alternative sources, it does tend to bring out the *zealot* in you, when

you've made your choice to put your eggs in the antibiotic basket, so to

speak...you kind of feel like you are caught in the middle of a squeeze

play. I have a lot of the signs of poor-prognosis RA, and need to feel some

solid ground under my feet somewhere, and this group is usually the place I

feel it most. But I don't worship the treatment--I worship life and the

creator of life--and hope the treatment will give me more out of life, and a

longer life to share with my loved ones.

I wasn't following this thread when it was going on, due to a minor family

crisis, but in reading back over it, think it could have been better in some

ways, and could have been a lot worse (trust me on that--I hang out on the

newsgroups a lot --it could have been a *lot* ruder -g-). The main aim of

the group is to support those on antibiotic treatment, and most of the

responses seemed to focus on the positives that contradicted the negatives

that were posted about antibiotic treatment. I like to hear all the info

about antibiotics, not just the good things, and am mindful that there are

bad side effects, and think we all should know about them, so we can be

alert to them if they affect us. But sweeping statements like " it is going

to backfire on you " and " they (alternatives) don't have fifty million side

effects " (I beg to differ--*everything* potentially has side effects-it is

always a risk/benefit choice) beg for sweeping rebuttals. This is exactly

the kind of comment about more mainstream DMARDS that always causes a bitter

fight on the newsgroups, in my experience. Everyone has to make their

choices, and no one wants to hear that it is going to screw them up royally,

or even kill them. Even choosing diet or probiotics or other alternative

methods could have a really awful outcome--at the extreme, death from

untreated autoimmune disease that progresses to something like pericarditis

or fatal lung involvement, or other organ or circulatory involvement--if you

had rapidly progressing arthritis, and a more aggressive approach was called

for. Sometimes not choosing a medical treatment is the worst choice of

all, and fatal. I feel you have to make a choice, and run with it, doing

the best you can with it, but always be ready to cut and run with another if

it proves to be the wrong choice for you. Just my opinion.

I also felt *really* bad to see this kind of discussion on a thread where

someone was seeking help for their child, and think it would have been much

better to start a new discussion on the pros and cons....in the hopes that

we could *all* learn from it. And I feel *really* bad for Adriel too, as

there obviously wounds there that needed tending, and I wish I had been in

my inbox last night to try, but family comes first, and I had a child with

an abcessed tooth giving her trouble last night. (and I was saying thank

heavens for the penicillin she was on while waiting to get it removed, for

keeping it from being a lot more serious and painful, believe me!)

I hope you have not unsubscribed, Adriel, and will stick around awhile.

I, for one, am not doing any happy dances tonight, and would like to talk

with you more on your past experiences. Sharing what I have learned and

reaching out a helping hand is one of my main strategies in healing right

now. I've been burned both by my medical experiences in the past, my own

ignorance, and by the simple passage of lost time.....reaching out both for

knowledge and to help others is a very selfish act on my part, in the sense

that it is giving me great emotional healing. I would like to talk to you

about that, too, if you are still here, and willing. Liz G

[Guest guest]

a,

Thanks for this reply. I too felt she needed to be challenged for sending

incorrect info. to the mother inquiring about the AP. I felt I wrote a kind,

respectable response to her and in return received what felt like a very

caustic/rabid reply. And I felt her reply to you was also very caustic.

I wanted to encourage her to explore the AP before discarding it as

" traditional western medicine " , which we all know it certainly isn't! Many

have to fight tooth and nail, and educate their traditional Dr.'s about the

protocol, in order to get on it. But she'd already chosen to depart by then.

I'm so glad you have been able to correspond privately and kindly. I too

felt bad that she was so misinformed and felt so offended.

M.

[Guest guest]

Rhonda,

I agree with you 100 percent. Especially your last line of " is it a

treatment or religion..... " as sometimes the opinions of others are not

always respected and treated diplomatically.

Those who choose to have an opposite view should not feel as if they are

opening " Pandora's Box " as I have learned so much from the different

opinions as many useful facts come out in a good debate.

We all know how to use the delete key.

>

>>

>> ________________________________________________________________________

>> ________________________________________________________________________

>>

>> Message: 3

>> Date: Fri, 29 Sep 2000 06:04:32 -0500

>> From: Trickey <jrtrick@...>

>> Subject: Re: RE: son newly diagnosed arthritis

>>

>> Hi everyone,

>> I don't usually jump in on this sort of thing, but sorry, I just can't

>> help myself this time. This is a support group. It has a definate theme-

>> antibiotic therapy. It's what I decided to go with after much thought

>> and consideration, not to mention bad experience with conventional

>> medicine. (I don't really appreciate the 'western' medicine reference.)

>> I don't think being told what I have based my whole treatment on is a

>> " little conceptualization " and just how do you know that the antibiotics

>> I'm on are going to " backfire " ? Just what does that mean, Adriel?

>> Nevermind, I don't really want an answer from someone as obviously

>> uninformed about it as yourself. , I too appreciate others opinions

>> and input. The people here have helped me immeasurably, but this is

>> bashing what we are all about and I don't come here for that. We are

>> here because the one thing we do agree on is that this works. I'm not

>> going to do a " little dance " as he so sarcastically put it, if Adriel

>> leaves... I hope he becomes " enlightened " . Delusions ARE sad.. even if

>> they are his delusions. Much love...... T.

>

>

>Hi group:

>I don't usually don't jump in on this sort of thing either, but I have to

>say my heart hurt for Adriel, even though he/she could have been much more

>diplomatic.

>As Adriel said, he/she didn't realize this group was primarily devoted to

>antibiotic therapy. It's easy to see why that would happen. Much of the

>recent discussion, for example, has been devoted to Hulda 's zappers

>and the proper recipe for a cider vinegar remedy. NOT THAT THERE IS ANYTHING

>WRONG WITH THAT.

> But you can see how someone might get confused if they were suffering brain

>fog and subscribed without really paying attention to what the group is

>about. If you read the messages, many of them don't deal with antibiotics at

>all.

>I felt sorry that Adriel, obviously a person who is suffering greatly, was

>basically told to love it or leave it.

>I have a question: Is the AP a treatment or a religion?

>Rhonda

>

>

>

>To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Hey and Tabitha.....maybe we should send the bulk package to Oprah

then!! I will be helping in this matter in anyway possible. If everyone would

like to email their story to me I will gladly print and mail to oprah or you

could each send story separately to Oprah. Whichever the group thinks

best.....

Donna Fox, Volunteer

Arthritis Foundation - KY Chapter

FACES Young Adult & Childrens Group

[Guest guest]

Jane ..I still have a few shirts remaining from the last shipment. What

size(s) do you need?

Donna Fox, Volunteer

Arthritis Foundation - KY Chapter

FACES Young Adult & Childrens Group

[Guest guest]

LOL .... humor can go a long way with JRA!!! This reminds me in

upcoming issues of FACES (Children & Young adults w/arthritis) Newsletter I

will be featuring a section....What is one thing you wish the world (general

Public) knew about arthritis????So if anyone would like to respond please

email them to me...thanks!

Donna Fox, Volunteer

Arthritis Foundation - KY Chapter

FACES Young Adult & Childrens Group

[Guest guest]

If you have any shirts extra shirts I would love to have one.I would like

everyone to know kids get ot also.

[Guest guest]

Donna, I would like a shirt if you have any extra.

Amy

Re: Digest Number 985

> Jane ..I still have a few shirts remaining from the last shipment. What

> size(s) do you need?

>

> Donna Fox, Volunteer

> Arthritis Foundation - KY Chapter

> FACES Young Adult & Childrens Group

>

>

>

[Guest guest]

Well, faces! 1999,

Donna Fax OOOPS Fox!

Sorry, crooked finger went wrong direction!

I think most often I receive from people is the general manner in which

they act around me. They so often act as though, because my outward

appearance (hands and back) show the signs of jra, that this deformity

must also be inclusive of my brain functions. Or they either, over

compensate in their attempts to assist me in a task, or avoid me for fear

of being exposed to the possibility, they might have to lend assistance!

They don't or won't realize, if I need help, I have a mouth and I KNOW

how to use it!!!

I just think it really shows their fear of, that could be me, idea.

I don't want anything more than the same respect and understanding, that

they, them selfs, are looking for.

Oh yea, and the WINING NUMBERS for Fridays BIG GAME drawing!!!!!!

Got any clues?

P.S.

E-mail those celeb's, but also send a printed copy as well!

[Guest guest]

I WOULD PERSONALLY LIKE IT TO SAY: ADULTS AREN'T THE ONLY ONES LIVING AND

SUFFERING WITH JRA..THAT THERE ARE SO MANY CHILDREN WHO START OUT YOUNG AND

GROW INTO ADULTHOOD WITH THIS DISEASE. IT WOULD BE GREAT FOR SOMEONE TO SAY

HEY THE CHILDREN ALSO HAVE PAIN AND ATTITUDE WHO LIVE WITH THIS SICKENING

DISEASE.....KAREN

[Guest guest]

hi this is karen..how do i go about getting a couple of

shirts............thanks..

[Guest guest]

I would also love to purchase the shirts, Let me know

how.....

Suzie

--- Lyn2574@... wrote:

> If you have any shirts extra shirts I would love to

> have one.I would like

> everyone to know kids get ot also.

>

__________________________________________________

[Guest guest]

Kathy,

ICalifornia Inland Regional Center just purchased a trike for who is

14. It has opened up a whole new world for him and has made him feel so good

about himself. He rides around the block with me walking beside and waves to

anyone on a bike, pointing to himself. He's so proud. It has a back

support, a belt to hold him in since he falls asleep if he gets to

comfortable, large flat peddles with foot velcroe and a place for his

communication device, which I want to replace for cooler handlebars. I sure

hope you get yours. It took a doctors letter over his weight, his adaptive

P.E. coach's letter and my letter of necessity for them to purchase a Rifton.

We wanted the Freedom Bike, but the cost was ridiculous at 2,999.00. Good

luck. From start to finish it took 8 months to get.

(mom to 14 DS/ASD)

[Guest guest]

,

This sounds very interesting to me , never thought about looking into

a bike for my son . He'll be 13 yrs. in July . I know I won't receive

funds if I request for one . Please try to send a pic of the bike or

just any info on it . Thanks !

Kathy , you too. send pictures , once you purchase your bike .

Congrats ! on the funds for s trike .

Irma , 12 DS/ASD .

-- In @y..., MBrayley@c... wrote:

> Kathy,

>

> ICalifornia Inland Regional Center just purchased a trike for

who is

> 14. It has opened up a whole new world for him and has made him

feel so good

> about himself. He rides around the block with me walking beside

and waves to

> anyone on a bike, pointing to himself. He's so proud. It has a

back

> support, a belt to hold him in since he falls asleep if he gets to

> comfortable, large flat peddles with foot velcroe and a place for

his

> communication device, which I want to replace for cooler

handlebars. I sure

> hope you get yours. It took a doctors letter over his weight, his

adaptive

> P.E. coach's letter and my letter of necessity for them to purchase

a Rifton.

> We wanted the Freedom Bike, but the cost was ridiculous at

2,999.00. Good

> luck. From start to finish it took 8 months to get.

> (mom to 14 DS/ASD)

[Guest guest]

Now scott and nathan can ride together,lol, i havent

developed any pics of nathan on his trike as of yet,

someone was wondering about funds, after we tried

everywhere for almost a year with no luck our church

bought nathan's trike for him, we got a good deal for

almost $500 for his trike, and we've been working on

the riding thing, pretty hard compared to little

brother, wheew, nathan can pedal and stop and finally

understands coasting when i say it, hills are still

rather difficult either way but were getting there,

what i did is hook a bungie chord under his seat tand

the other end to my handle bars and when we go down a

hill i am behind him directing him in coasting and

using his brakes, plus i will use my brakes to help

slow him down, then on the flat roads i have him on

the inside andhe stays on the inside occasionally he

starts to run in to me , he says " soory " and he loves

the bumbs on roads, lol makes a surprised sound each

one,lol. prayers that getting your trike will go

easily. shawna.

__________________________________________________

[Guest guest]

Message 10

Yes, I have low basal temperature.

Yes, I have a 10 year exposure to , asp, pen, and other molds In 1993 I suffered Legionaires Pneumonia and currently out on Workers Comp from the IRS, federal facility owned by GSA located in Dallas, TX

I will be happy to supply any information that I can.

XPaperDollyx@...

Regards, Ruth

[Guest guest]

Hi

I just received my 5.99 book whichis actually a

paperback guide to the aoids, neutrals, beneficials

It does not get into ER theory or dicuss practival

daily stuff.

Dr Vliet does in screaming to be heard

merrill

RE: each blood type book

> Yesterday I saw he has a separate ER paperback out

for each blood type. The

list price is $5.99 - had I seen this first I would

have gone with it. I am

wondering if there is different information ? Does

anyone have one ?

[Guest guest]

minna my son had this to happen to him i was told that it was too much vit b6

sooooooooo i decreased it... neva

________________________________________________________________________

Message: 6

Date: Sat, 18 May 2002 18:56:30 -0400

From: " Minna "

Subject: question re: numbness

question.

the arms sometimes are totally numb, from foreamrs to fingers.

in the mornings. and if lift them up to like brush hair.

also, the feet. strangely, in the feet, it was very intense only in the middle

toe in the left foot.

this has been on and off for a several months,. but occasionaly it comes on

quite strong, for a few days in a row.

minna

" The Doctor of the future will give No Medicine, but will interest his

patients in the care of the human frame, in diet, and in the cause and

prevention of disease. " .-Attributed to Alva Edisonn

" Our lives begin to end the day we become silent about things that matter "

Dr. Luther King, Jr

---

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[Guest guest]

In a message dated 3/10/04 4:19:30 AM Mountain Standard Time,

SSRI medications writes:

> Also, do folks think it would be worth writing a letter demanding to know

> why the FDA has not, to date, taken the advice of their advisory committees

> to issue a warning " as soon as possible? "

>

Dear Leah: There will be a letter posted later today about writing our

congressmen demanding the names of these people and demanding that some of them

be

excluded. Stay tuned. My friend Rob has been hounding the FDA AND Temple --

don't worry, it's not going to fall through the cracks! LOL

Blind Reason

a novel of espionage and pharmaceutical intrigue

Think your antidepressant is safe? Think again.

[Guest guest]

In a message dated 3/10/04 4:19:30 AM Mountain Standard Time,

SSRI medications writes:

> Also, do folks think it would be worth writing a letter demanding to know

> why the FDA has not, to date, taken the advice of their advisory committees

> to issue a warning " as soon as possible? "

>

Dear Leah: There will be a letter posted later today about writing our

congressmen demanding the names of these people and demanding that some of them

be

excluded. Stay tuned. My friend Rob has been hounding the FDA AND Temple --

don't worry, it's not going to fall through the cracks! LOL

Blind Reason

a novel of espionage and pharmaceutical intrigue

Think your antidepressant is safe? Think again.

[Guest guest]

In a message dated 3/10/04 4:19:30 AM Mountain Standard Time,

SSRI medications writes:

> Also, do folks think it would be worth writing a letter demanding to know

> why the FDA has not, to date, taken the advice of their advisory committees

> to issue a warning " as soon as possible? "

>

Dear Leah: There will be a letter posted later today about writing our

congressmen demanding the names of these people and demanding that some of them

be

excluded. Stay tuned. My friend Rob has been hounding the FDA AND Temple --

don't worry, it's not going to fall through the cracks! LOL

Blind Reason

a novel of espionage and pharmaceutical intrigue

Think your antidepressant is safe? Think again.