HDTenEightyP/NetNews huggingface dataset:
From: Dawn_Scotting@kcbbs.gen.nz (Dawn Scotting)
Newsgroups: alt.sewing
Subject: Surface decoration and quilting.
Date: 26 Jan 93 04:38:45 GMT
Organization: Kappa Crucis Unix BBS, Auckland, New Zealand

wratt_d@kosmos.wcc.govt.nz writes:   
>a rather slapdash machine quilter/screenprinter etc? So far I haven't seen an
>other New Zealanders on here? I'm also happy to answer kids questions on N.Z.
  
Here's another one, and I know of at least one other although I haven't  
seen her around for awhile. I don't often post in this newsgroup but  
_always_ read it, I'm more into posting in the rec.crafts.* groups. I'm  
not a quilter as yet although I'm gradually getting a nice collection of  
cotton pieces to make one one of these days, hopefully over winter when  
the garden has died down a bit! It's nice to see another kiwi online,  
there's not many of us around Usenet, ladies that is, there seems to be  
quite a few males of course. The answering kids questions on NZ might be  
better addressed in soc.culture.new zealand as it would be getting away  
from the sewing subject in here. Have fun......Dawn  
   
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 | PLEASE READ THIS----As I must pay for every byte of email received  |  
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Newsgroups: alt.med.cfs
Date:         Wed, 27 Jan 1993 09:51:29 EST
              <CFS-L@NIHLIST.BITNET>
From:         Marc Gabriel <mcg2@LEHIGH.EDU>
Subject:      Re: explanation of "good treatment"

>I was just diagnosed with CFS and am obviously concerned about getting
>
>depressed about the loss of my normal life...some days I don't feel like
>I have a life. I miss hiking and biking etc etc etc. I am trying to adjust
                       ^^^^^^^^^^^^^^^^^
Without opening a can of worms, I would like to know if Terry has been tested
for Lyme disease.  While I do believe that CFS exists in some patients, some
doctors still think LD is something that "can't happen to my patients."
Start off with antibody testing (ELISA *AND* Western Blot) and see what the
results are (keeping in mind that accuracy will be rather pathetic).

I was originally given a CFS diagnosis.  Since I knew my doctor was one to
take the path of least resistance, I went to SUNY Stony Brooks's LD clinic
where I was diagnosed (properly) with Lyme.

When Terry said "hiking" and "biking," bells went off in my head.

-Marc.

--
---------------------------------------------------------------------
             Marc C. Gabriel '93    -  U.C. Box 545  -
               (215) 882-0138        Lehigh University
              mcg2@Lehigh.EDU       Bethlehem, PA 18015
                Compu$erve: >internet:mcg2@Lehigh.edu
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I'm still thinking about the witty one-liner I'm supposed to put here.
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Newsgroups: alt.med.cfs
Date:         Tue, 26 Jan 1993 09:12:39 EST
              <CFS-L@NIHLIST.BITNET>
From:         BEKI BRINDLE-DEMYER <RLBRINDL@INDYCMS.BITNET>
Subject:      Re: Laughter a Rx for Health

Yesterday my computer was typing characters all by itself and the two messages
that I sent were full of typos; SORRY! The point about the connection between
NUTRASWEET & CHER having CFS is interesting because she is basically the spokes
person for "EQUAL", (not the pink stuff!).  When Nutrasweet first came out, we
heard it was a product of some "TREE", but I don't remember the story at this
point.  Could someone fill us in?  What IS nutrasweet, really?!



                                          BEKI

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*Beki Brindle-DeMyer                                         /       *
*RLBRINDL@INDYCMS.BITNET                                    /        *
*RLBRINDL@INDYCMS.IUPUI.EDU             \ .. /             /         *
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Newsgroups: alt.med.cfs
Date:         Tue, 26 Jan 1993 22:19:57 EST
              <CFS-L@NIHLIST.BITNET>
From:         Mark Wilson <F031@MUSIC.FERRIS.EDU>
Subject:      Introduction

Hello!

My name  is Jean Wilson.  I live in Big Rapids, Michigan where my
husband is a student at Ferris State University.  I was diagnosed
with CFS almost a year ago.  My health is much better now than it
was at the onset of the illness, almost like I was in semi-remission,
but now I am starting to feel quite sick once again.  I do not
know anyone with CFS so it would be wonderful to have someone who
really understands to share ideas and support with.

I would greatly appreciate any input that I can get from you on
experiences, medications, and anything else you would like to
discuss.  I am working full time right now which is almost
impossible so if you have any great coping techniques I would
really love to be clued in on those!  looking forward to hearing
from you!

Jean
F031@FERRIS
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Newsgroups: alt.med.cfs
Date:         Mon, 25 Jan 1993 15:43:37 -0500
              <CFS-L@NIHLIST.BITNET>
From:         MJK04@ALBNYDH2.BITNET
Subject:      Lyme Disease

      Is the lyme disease group, mentioned earlier, up and running?
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Newsgroups: alt.med.cfs
Date:         Tue, 26 Jan 1993 13:30:43 -0500
              <CFS-L@NIHLIST.BITNET>
From:         KEGANRO@HUGSE1.HARVARD.EDU
Subject:      sleep

I have another question about the old sleep thread that was bouncing around
on this list a few weeks back... I was the one who started the thread, writing
about my wretched sleep pattern.  I got lots of helpful suggestions, but
am now wondering about another option, klonipin.  I went to my doctor this
morning -- she's quite knowledgeable about CFIDS -- and told her I was
losing it as a result of sleeping so poorly and waking up 10 or 11 times a
night.

        Anyway, she suggested trying klonipin.  I had previously rejected it,
because it seems so similar to valium, which puts me to sleep, but doesn't
make me feel
 any more rested when I like
 wake
up (oops, sorry for the glitches --), and doesn't even really seem to keep me
from waking up during the night.  But my doctor says she thinks klonipin is
more effective, and worth trying for a significant length of time, like a
month.  I'm wondering if anyone has used klonipin, or currently does, and
what your experiences are, both positive and negative.  I'm wondering how
quickly one gets addicted, and whether its a problem to go off of it after
a month or so if it isn't effective.

        Any responses are appreciated -- Kate

P.S. my Dr. went to a conference for CFIDS doctors last month, and said
that the physicians there were pretty excited about ampligen.  That it seems
to significantly help the majority of patients who try it.  She (my Dr.) tried
to become part of the next phase of the trials, but didn't succeed.  In order
to qualify, the Dr. has to be a full-time CFIDS doctor, and mine sees other
patients as well.  So there unfortunately won't be a Boston site in the
trial...
From: MJK04@ALBNYDH2.BITNET
Newsgroups: alt.med.cfs
Subject: reply
Date: 26 Jan 93 14:50:15 GMT
              <CFS-L@NIHLIST.BITNET>
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*** Forwarding note from MJK04   --ALBNYDH2 01/26/93 09:38 ***
To: MJK04   --ALBNYDH2

SUBJECT: reply

Thanks to all who filled me on the Lyme group.  Since I am new at this,
when I get rejected (unknown list, no such list), I assume it is something
I have done wrong.
I am beginning to think I know a lot of sick people.  I know 3 people
diagnosed with Lyme Disease, including my son.
I orginally signed up for cfs because my sister had some weird thing about
3 years ago that never was diagnosed.  She eventually got so desperate she
had all the fillings ripped out of her teeth.  Again she is having "trouble"
but thinks this time it may be something pulled from playing tennis. Now she
is going to an acupuncturist because again her "real doctor" was heading
for the tranquilizers.
The first time she was sick she could sometimes not get out of bed.
A few months before this, she was bitten by some bug while taking
a cruise down a river (in California).  She got instantly violently ill and
had to be brought back to the dock and dumped off.  I always wondered if
this could have triggered something.  She was the "healthiest and
most active" in the family before this.
From reading what others have written about cfs, some of the symtoms
are the same as a friend of mine who is on prednisone, can't sleep even
when tired, no colds or common bugs....interesting.  I understand
prednisone is a steroid.
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Newsgroups: alt.med.cfs
Date:         Tue, 19 Jan 1993 15:25:00 PST
              <CFS-L@NIHLIST.BITNET>
From:         John Setel O'Donnell <jod@EQUATOR.COM>
Subject:      Go to the Movies...

....and go see "Lorenzo's Oil".  I thought it was a powerful, well-made
film that resonated strongly with my experiences around my illness.  I
found it inspiring watching others' clarity about pursuit of a cure,
rather than accepting the current limitations of knowledge.

- -

One thing that stood out as different between ALD and CFS or Lyme,
other than the progress and extent of the disease, was the intake and
diagnostic process.  There was almost none of the "he's
{malingering|depressed|making this up}" stuff that most of us have had
to go through.  There was no doubt that the boy was sick and that
action had to be taken.  I _still_ find myself slipping into the
denial pattern: "I don't really have this"; "I'm just imagining that I
feel this way, I don't, really"; "if you just ignore it it will go
away".
-------
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Newsgroups: alt.med.cfs
Date:         Wed, 27 Jan 1993 10:54:09 -0500
              <CFS-L@NIHLIST.BITNET>
From:         KEGANRO@HUGSE1.BITNET
Subject:      Re: COLDS?

~r}}
Liz -- just wondering what "good treatment" has meant for you.  What
exactly have you tried, treatment wise, and how has it helped you?

I've also been sick for 2 1/2 years, and have a physician I like and trust,
but aside from suggesting some nutritional supplements that I haven't felt
clear improvement from, and some suggestions for symptomatic treatments, she
hasn't had much to offer.

It's great to know that some people are doing better -- Kate
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Newsgroups: alt.med.cfs
Date:         Tue, 26 Jan 1993 22:13:08 EST
              <CFS-L@NIHLIST.BITNET>
From:         BEKI BRINDLE-DEMYER <RLBRINDL@INDYCMS.BITNET>
Subject:      Re: COLDS?

In response to your question "How long were you sick before you became not-so
sick?"- I GUESS I was sick from Feb.1988 to maybe October 1991.  I mean I notic
ed a tapering off of long periods of being "DOWN" with the illness during the s
ummer of 1991 and slowly started to just, "get better"!  My stamina both mental
ly, and physically had begun to increase and at the present, I only get struck
down maybe a few days a month. (as opposed to the weeks of delirium I experienc
ed for the first 2 1/2 years or so).  Some people think that we with CFS are
REALLY sick for a long time preceeding the MAJOR onslaught, and I tend to agree
because I was pushing myself to the limit on all levels BEFORE  I got "SICK" &
it took SEVERE Symptoms to push me over the edge and admit that I had to slow d
own.   It's almost like riding a tidal wave, but I feel that at least in my cas
e, this "Illness" had a course, and ran it.  I'm still not completely over it &
don't really know if I ever will be. I just know that I'm working hard again bu
t I KNOW my limitations, and PACE everything I do!             BEKI

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*Beki Brindle-DeMyer                                         /       *
*RLBRINDL@INDYCMS.BITNET                                    /        *
*RLBRINDL@INDYCMS.IUPUI.EDU             \ .. /             /         *
*                                         ><   -----------/          *
*                                             _\_      _|_           *
From: prb@access.digex.com (Pat)
Newsgroups: alt.med.cfs
Subject: Re: not a pretty subject, but. . .
Date: 27 Jan 1993 22:58:23 -0500
Organization: UDSI
NNTP-Posting-Host: access.digex.com


Some vitamin manufacturers use binders and hardeners that do the same
thing to your gut.  I know some people have to drop off of vitamin
therapy for that reason.  that or try dropping the latest ones you added.

pat
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Newsgroups: alt.med.cfs
Date:         Wed, 27 Jan 1993 00:37:00 PST
              <CFS-L@NIHLIST.BITNET>
From:         Liz Heller <lizh@STARCONN.COM>
Subject:      COLDS?
              26 Jan 1993 17:04:06 -0500 <9301262207.AA16539@apple.com>

Thanks so much to all who wrote about catching colds when they were
recovering.  For the first couple of years that I was sick, I also
didn't catch colds or flu, just felt lousy all the time.  This summer I
started feeling better, and about a month ago, when my husband came down
with the flu, I came down with it a few days later, and was just as
miserable as he had been.  I was puzzled by this, and so it was
very reassuring to learn that other people have had similar things happen
as they recover.  Does anyone know why this happens (the not catching
colds, and then after feeling better catching colds again)?

I've heard that it's possible to feel quite a bit better with good
treatment after between 2 and 5 years.  I've been sick for 2.5 years,
(seems like forever!), started getting proper treatment a year ago,
my doctor's project plan calls for me to be as good as she can
get me in about a year, and she says we're on schedule.  If anyone
had told me a year ago, how much I would have recovered by now, I wouldn't
have believed them, but it's happened.

Best wishes,
Liz Heller
lizh@starconn.com
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Newsgroups: alt.med.cfs
Date:         Mon, 25 Jan 1993 08:25:54 PST
              <CFS-L@NIHLIST.BITNET>
From:         Sean Erwin <erwin@BEND.UCSD.EDU>
Subject: Re: nutrasweet/CFS

Er, who is organizing CFS awareness day on 5/12?  Will it continue on that
date every year?
---Sean
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Newsgroups: alt.med.cfs
Date:         Mon, 25 Jan 1993 16:57:03 EST
              <CFS-L@NIHLIST.BITNET>
From:         BEKI BRINDLE-DEMYER <RLBRINDL@INDYCMS.BITNET>
Subject:      Re: nutrasweet

    DIDN'T CHER GET DIAGNOSED AS HAVING CFS?! SHHE'S REALL "INTO" NUTRA-      S
WEET, ISN'T SHE?!




                                  BEKI

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*Beki Brindle-DeMyer                                         /       *
*RLBRINDL@INDYCMS.BITNET                                    /        *
*RLBRINDL@INDYCMS.IUPUI.EDU             \ .. /             /         *
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Newsgroups: alt.med.cfs
Date:         Tue, 26 Jan 1993 19:49:14 EST
              <CFS-L@NIHLIST.BITNET>
From:         Debbie <DKMVLS@HARVARDA.BITNET>
Subject:      Re: not a pretty subject, but. . .
              26 Jan 1993 08:35:11 -0500 from <patty@WELCHLAB.WELCH.JHU.EDU>

Try flax seed - you can buy it at any natural food store.  Take 2 table
spoons and grind them in a blender for a few seconds.  Then you can mix
it into food, drink or whatever.  I did this, on the advice of my doctor,
once a day and it worked like a charm.  Good luck!

                                     Debbie
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Newsgroups: alt.med.cfs
Date:         Tue, 26 Jan 1993 11:57:58 EST
              <CFS-L@NIHLIST.BITNET>
From:         Roger Burns <BFU@NIHCU.BITNET>
Subject: Re: Laughter a Rx for Health

Equal IS Nutrasweet.  BTW, Dr. Charles Lapp, along with others, has
recommended that CFS patients avoid Nutrasweet, and he reports that
he's received communications from the Nutrasweet company to please
stop saying that, but Lapp has said thank you but I must do what is
good for my patients.  I wonder if the Nutrasweet people, being aware
of the growing CFS population and that there's some controversy
regarding Nutrasweet & CFS, have gone out of their way to get Cher
to be their spokesperson, knowing that Cher is associated in the minds
of many as being a CFS patient (something she can't admit to in public
since the CFS tag badly impacts any high-priced contractual performer --
something to do with insurance).  I'd like to think that if Cher was
hoodwinked into this, that she was unaware of the CFS/Nutrasweet
controversy.  But I don't know.  But there may be a way to find out.
I have an idea & I'll post more about this soon.


-- Roger Burns              bfu@cu.nih.gov    bfu@nihcu.bitnet
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Date:         Mon, 25 Jan 1993 07:41:41 -0700
              <CFS-L@NIHLIST.BITNET>
From:         TERRY ROSATO <ROSATO@NAUVAX.BITNET>
Subject:      nutrasweet/CFS

Carla-
What is arginine and why shouldn't you have it? Also can you give more
details from the nutrition list from Dr Cheney. Oh and is arginine in
all nuts? Is it in seeds like sesame seeds?
Thanks
Terry Rosato
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Newsgroups: alt.med.cfs
Date:         Tue, 26 Jan 1993 11:23:31 EST
              <CFS-L@NIHLIST.BITNET>
From:         Roger Burns <BFU@NIHCU.BITNET>
Subject: Re: not a pretty subject, but. . .

> I have been having a real problem lately with constipation, and
> I am wondering if anyone has any insight/advice to give.

I don't know enough about the things your taking to guess why this
problem has developed.  I'll mention that I've had a lifelong problem
in this regard long before I came down with CFS.  What's helped me is
eating a substantial amount of fruit just before the large meal of
the day, i.e. I eat 3 apples (or a lot of grapes, depending on which is
cheaper this month) just before supper.  Also I take lots of liquids.
Exercise, although mostly contra-indicated for CFS patients, can be
helpful -- it would be good to take long walks regularly, or to build
up to long walks over time.  Also, I've been taking magnesium capsules
to help counteract muscle pain, but if you take too many of them during
the day you can get the opposite problem of constipation (diarrhea)
-- perhaps taking the right amount of magnesium supplements can help
find a balance for you between the two conditions?  You should discuss
this with your physician.


-- Roger Burns              bfu@cu.nih.gov    bfu@nihcu.bitnet
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Newsgroups: alt.med.cfs
Date:         Sat, 23 Jan 1993 22:59:41 EST
              <CFS-L@NIHLIST.BITNET>
From:         Roger Burns <BFU@NIHCU.BITNET>
Subject:      CFS Awareness Day

> Has anyone else read about having a CFIDS awareness day?  Now I can't remembe
r
> whether I read about it in Roger's newsletter...somewhere I read about having
 a
> CFIDS lie-in to publicize the enormous loss and costs involved in CFIDS.
> Just wondering what others think of this idea... Kate

Yes, it was in CFS-NEWS, and I hope it has been / will be promoted in
other CFS publications as well.  I received a copy of some memos sent
out by the CFIDS/FM Support Group of Hinsdale, New York which has
gathered together the addresses & phone numbers of their senators,
congresspeople, state legislators, state governor & lieutenant governor,
and local health departments and will be asking all CFS patients and
those who care about them to phone in their concerns to these
decision-makers, whose contact information is sent out to patients
along with the memo.  They are planning local demonstrations and are
expecting other actions focused on their state capitol and Washington, DC.

Sharon Horejs, R.N. retired & leader of the Southern California CFIDS
Awareness Group, has recommended that it would be excellent for there
to be some focus on promoting CFS concerns to local public health
departments in the USA since pressure on them would eventually feed up
to the Centers for Disease Control which would then be obliged to give
CFS much more attention.

I spoke to Tom Hennessey about the difficulty for many CFS patients
to make their way to their state, provincial or national capital in order
to participate in the May 12 action.  He said that he'd thought of state
capitals in part because the architecture of the capital buildings
would make an excellent backdrop for television news coverage; he further
said that CFS patients that could not travel to capital cities would
hopefully organize similar events in their home city and would contact
local TV and newspapers for coverage of those events.


-- Roger Burns              bfu@cu.nih.gov    bfu@nihcu.bitnet
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Newsgroups: alt.med.cfs
Date:         Wed, 27 Jan 1993 23:17:37 EST
              <CFS-L@NIHLIST.BITNET>
From:         Roger Burns <BFU@NIHCU.BITNET>
Subject:      Lyme testing

> Start off with antibody testing (ELISA *AND* Western Blot) and see what the
> results are (keeping in mind that accuracy will be rather pathetic).

Can you tell us more about these tests?  Someone else who has posted
Lyme info to this list, whose name somehow slips my mind, has said that
"Lyme tests" need to be taken several times and even then they are
unreliable; I presume now that this was a reference to ELISA and Western
Blot antibody tests?  Do these tests give false positives, or false
negatives?  Or both?  Is there any consensus along the lines of 'If you
take 5 consecutive tests and 4 of them are positive then you've probably
got Lyme'?


Roger Burns      bfu@cu.nih.gov / bfu@nihcu.bitnet / fidonet 1:109/432
List-owner, Chronic Fatigue Syndrome discussion
CFS-L  on LISTSERV at NIHLIST.BITNET or LIST.NIH.GOV
Newsgroup: alt.med.cfs
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