Auto-immune diseases

test-

Walmart charged me $72 for 30 caps at 200mg. (before insurance) That just
probably means that
US Retailers are gouging us. Why don't you just ship us a crate Doc? :)
Mark

http://www.hovione.com/h_doxy/main.htm
--
Clark Signs:
http://members.xoom.com/sclark/
AP Support Group:
http://www.geocities.com/SoHo/Gallery/6412/
Lots of arthritis and health links:
http://www.geocities.com/SoHo/Gallery/6412/supportlinks.htm

For those of you taking Enbrel and/or Celebrex along with the AP how are you
doing on those drugs? Do you have any side effects? I have been having
sore throats and difficulty swallowing on and off since about June 99. I
don't have strep according to the doctor and the only reason I can come up
with is allergies. It feels like sore on the inside of the throat sometimes
and sometimes it feels like it is in the lymph glands on the outside if that
makes any sense. Anyone else have this problem? I have been on the AP
since June/July 1997. I started the Enbrel and Celebrex around April 1999.
I have more energy, less pain & fatigue. I still have stiff joints and have
to take a one hour nap each day but that is such an improvement over the
three hours I used to nap each day. I would like to hear how you are doing
on this treatment and compare notes. I credit the AP with getting me out of
bed and the Celebrex with reducing the pain & inflammation. As for the
Enbrel, I am not sure exactly what it does to modify the RA but I know that
I am much more energetic. Even though I already have damage to my wrists I
can now use them a lot more than I have been able to in a long time.
Thanks for your input.
JB
RA April 97
AP June 97
Prilosec 97 GERD
Celebrex April 99
Enbrel 99

Dear Chris:
Just wanted to thank you for the response and referral list. I contacted Dr.
Trentham in Boston via e-mail, sent copy of the info I sent you, and he
called me himself the next a.m.!!! I will see him in less than 2 weeks. He
will do an initial evaluation for AP (and possible inclusion in study with a
new drug, Neutro something?). Anyway, he will work as consultant with my
local RDr. which really gives me a huge sigh of relief. Again, thank you.
Babs
PS I am extremely grateful for the mailing list, am learning a lot by
reading the e-mails, and identify with so many.

Sent By: Sarah Clark
I thought you might be interested in this.
Read the article at the following web address:
<http://orthopedics.medscape.com/Medscape/CNO/1998/AAOS/03.20/AAOS.0320.01.html
Double click on this Web address. If your Web browser doesn't launch and
open the article, see the instructions below.
=======================================================
INSTRUCTIONS FOR READING THE ARTICLE

http://www.medscape.com/medscape/cno/1999/DDW/Story.cfm?story_id=636
Check out this article about Cox2 inhibitors. I was thinking of our
discussion about Nsaids=Pain a few days ago while reading it. See the last
paragraph under COX2 Clinical studies, Side-effects and complications. I
think this may go a long way toward explaining the effect of increased pain
and inflammation some of us have with them. Liz G

Hello all:
I have had RA symptoms since mid-June, but no positive RF factor or elevated SED
rate. I have been on Minocin 200 mg MWF for about three months. Two weeks ago my
rheumy ordered blood tests to see if my RF factor had turned positive. It is not
positive, and my SED rate remains at 8.
However, I am told I have mononucleosis. I HAVE been feeling especially awful.
Moreover, I am told I had mono at some time before and the virus is now
"reactivated." I never knew I had it before.
My rheumy now says the mono explains not only my incredible fatigue but my joint
pain. Research definitely does not bear out that chronic joint pain is a mono
symptom. (Joint pain for four months straight?)
Also, the blood tests show that at one time I had the "Parvo" virus, which I
thought was only for dogs! Research on the Net tells me the Parvo virus includes
severe joint pain! But blood tests say I had it once and no longer have it.
I am really confused. Can Parvo virus lead to RA or other inflammatory
arthritis? Can you no longer be positive for Parvo but still have the symptoms?
Has anyone else with RA or another rheumatic disease also come down with mono?
Or had the Parvo virus?
Finally, my ASO was 35, which I am told is normal. Supposedly it's not a concern
until it reaches 200??
Any advice or feedback would be much appreciated.
Thanks
Rhonda

Test
Mark

Did anyone else's newsletter from Dr. Mercola come in looking like
double exposed film? Mine did.
Connie

I've posted an article at
http://www.onelist.com/files/rheumatic/Autoimmunearticle.pdf for those of you
who might be interested in reading an interesting explanation of autoimmunity.
You will note that this is in Acrobat Reader format (.pdf). I assume most of you
have this on your machine, but if not, you can pick it up at
http://www.adobe.com/products/acrobat/readstep.html . Please note that if you
are downloading the Reader that it is a 5.5MB download, so it may take about 45
minutes or longer. (My file that I posted is only 57K).
Mark
http://Mark_Holmes.tripod.com
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day MWF;Methotrexate (10mg/once weekly);
folic acid (1 mg/day); Lodine 400mg 3x/day;Zone Diet;Fish Oil(9
caps/day);acidopholus;Milk Thistle;MSM (2G/day)
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html
ICQ 18123139
AOL IM "ATHiker95"

Hi,
Mike,
Plaquenil, sulfalazine, and metho are a common combo for rheumatologists. It
has been found that this is a more effective treatment than metho alone for many
people who have no results from only taking metho . It also makes it possible
to give smaller dosages of each drug to minimize side possible side effects. All
are used to slow down an overactive immune system and by so doing hopefully slow
or even stop the progression of the disease. This is not a belief commonly
shared by this group, I might add. :)
Mark
(Mikes' Question to Tony)
Why are you taking so many different drugs? Forgive me if this question has
been asked before and I've forgotten the answer and forgive my ignorance of
which drug does what but for example is it not the cae that Methotrexate
Plaquinil and Sulfasalazineare are alternatives. If you have time I'd be
interested to know what each of the things you're taking is supposed to do.
Mike
Botswana

Ok,
I finally threw out the Naprosyn and requested something different over the
phone and she immediately prescribed Celebrex 200mg bid. Is this the drug
of choice these days?
What's the scoop on this drug. I've been ignoring the conversations not
thinking I'll be using this but it seems to work like a damn. It's very
expensive compared to other NSAIDS. But I have to get my inflammation under
control for the AP.
Any comments are welcomed.
FYI, it's $104.00 for 60 capsules.
Donna
Ottawa, Canada
Scleroderma, Jan.95, AP Oct.97
(My Story)http:// www3.sympatico.ca/mousepotatoes

Is any one doing antibiotic treatments that had silicone -gel breast
implants? They where in my wife for 16 years and where removed in 1995 but is
still sick.
Thanks- Pete

<http://www.newswire.ca
NewsWire <<...
Give us your message. We'll give you the world.
Attention News/Health Editors:
The Arthritis Society applauds Federal Government's New Health Research
Initiative
TORONTO, Oct. 22 /CNW/ - The Arthritis Society applauds today's
announcement made by Federal Health Minister, Allan Rock which outlines the
funding and the federal government's vision of the new Canadian Institutes
of Health Research (CIHR). The Institutes would bring together researchers
from across Canada to study diseases such as arthritis.
Health Minister Rock said that he will be tabling legislation on CIHR
in the next few weeks and that the Institutes will be ``opening the doors''
and functioning on April 1st 2000.
In its 1999 budget, the Federal Government allocated $65 million dollars
for CIHR and its programs for 2000 - 2001 and another $175 million dollars
the following year. At that time, Federal Finance Minister Paul Martin cited
arthritis as a disease which could benefit from the CIHR program.
Today, Health Minister Rock indicated how CIHR funds would be used. He
indicated monies will be directed toward: health researchers; scientists at
different stages of their career; scientists studying behavioral issues;
community alliances with government and clinical research which could focus
on issues such as health determinants (diet/lifestyle).
Denis Morrice, President and CEO of The Arthritis Society is thrilled
with the government's initiative. ``The CIHR is a superb development because
it will encourage scientists from across the country to collaborate and
breakdown traditional `silos'. It also means that scientists and researchers
will be able to take their message to the people -- take it to all Canadians
and get the public involved. The Arthritis Society is committed to this
`community' approach to research. There are 4 million Canadians living with
arthritis. Canada's baby boomers are turning 50 and they are beginning to
feel
the brunt of this disease.''

My GP has agreed to prescribe Zithromax. I would appreciate hearing from
anyone who is using or has used Zithromax along with Minocin for RA. I
would like information on the following:
--dose
--how long have you taken it before noticing any effects?
--side-effects
--herx?
--effect on bloodwork?
--how it compares to Clindamycin for those who have taken both
Thanks for any information you can give me.
Linda

Hi:
I started on celebrex today. I got A 20 DAY SUPPLY OF SAMPLES FROM MY
DOCTOR. I'm hoping it will help my inflamation enough so I can cut
down on prednisone. Keep your fingers crossed for me.
Sandy

I have two separate pieces of information.
First, I just read a great book called PREVENTING AND REVERSING OSTEOPOROSIS
by Dr. Alan Gaby. He goes into all the minerals you need, in addition to
calcium and vitamin D, for healthy bones.
Second, I just read in a newsletter called Arthrofax that research is being
done on a protein that they feel may reverse lung problems from rheumatic
diseases. Unfortunately, the article gave no other information.
Linda
Linda

First thanks to Paula for posting the Cheney website. Great info on the
glutathione pathways.
Regarding whey products, Nancy posted on 10/9 that for her family the
Life Extension product worked just as well as the Immunocal. Nancy, or
anyone, can you tell us what amount of this product you have to take to
equal one packet of Immunocal?
I have only tried Designer Protein which I couldn't tolerate because I
had an allergic reaction to it. Cheney says that most people can
tolerate the undernatured (sp?) whey even with a milk protein allergy.
Does anyone on this group have a casein allergy but find they can
tolerate whey products?
TIA
Hope
krhess@...

Sorry group about the test mails.
I've had no email since 16th October and only just figured I'd been reading
the same ones over and over - LOL!!!! I knew I was downloading them all,
but I couldn't see where they were going. I even emptied the trash,
thinking that maybe it was overfull or something <grin
1900 emails, much to my surprise!
I then decided to check my filters and found a funny one which didn't have
anything in it except that it transferred to the Trash bin. Then a
horrible thought came to me - so I started testing and lo and behold, I'd
set up to transfer every incoming mail to the trashcan <weeping copiously
and lol at the same time
Aaaaaarrrrrrrrggggggghhhhhhhhh.
And I'm feeling sooooo good, no pain, have only had one hot flush in two
days, can get out of bed and do things straight away - no fog, all these
good things. ROFL, methinks the trashcan is where my brain ought to be :)
:) :)
Sorry again,
Love and hugs to all,
Jude.

Does anyone have experience using olive leaf for arthritis.
I have some literature indicating that it is a powerful
antibiotic and wonder if it would be a good adjunct natural
aid to take with the minocin.
Also, can a herx reaction also be associated with one's
skin breaking out (on the face)? I sometimes get headaches
with the minocin. On Wednesday I awoke with a headache that lasted
all day, then Thursday my skin on my face was all broken out.

Ray,
As far as I've heard the side effects you mentioned are not at all too
uncommon with minocycline...some say it is related to the dosage (that is
why the AP generally states use 100mg three times a week...it is much better
tolerated)....
I can relate to your results to an extent....I've been fortunate to not
suffer too many side effects as of yet...I've been on 100mg of minocycline
twice a day for nearly three weeks now and my joints feel better than
they've felt in a LONG TIME....though I do seem to have "bursts" of
increased inflammation and increased overall "ill" feelings my joints are
much better..I suppose it could all be in my head but who cares...SOMETHING
seems to be working.
_____
Blessings and Health
Tony (Diagnosed Sero-Neg. RA April 1999, on AP since 5 Oct 99)

Meds (Dr Prescribed): Methotrexate 10MG per week; Folic Acid 2MG per
day; Prednisone 10mg daily; Sulfasalazine 4G daily; Plaquinil 400mg
daily; Minocycline 100mg 2X daily; Prilosec 20-40mg daily

Alternative Meds/Herbs: Flax Seed Oil (Omega 3, 6, 9) 6g daily; MSM 2g
daily; Pantothenic Acid (B5) 2g daily; Echinacea/Goldenseal 420mg daily;
Ginseng 840mg daily; Chitosan 2g Daily

I found this web site today. Features Metagenics
products. Ultra Flora is shipped with dry ice....
www.healthdesigns.com
Dottie
=====

Here's a cute joke I know the men on this group will like.

I do know that Nsaids can cause swelling in the extremities.
That is a common problem with them, so what you are experiencing
may not be so atypical, despite being a pain in the a.....
(thought I was going to say something else,huh? Ha!)
Mark
From: "Donna and Ray" <mousepotatoes@xxxxxxxxx.xx
Subject: Re: NSAID's=PAIN?
Gotta agree with you there.
I have been on 375mg of Naprozen e, for 4 years now. In May of this year I
started having huge problems with edema in my ankles. The pain was so bad
that every evening and often during the day I had to "ice" down my ankles in
order to continue walking. During holidays in July I had to take the ice
packs with me for when we stopped for lunch so I could manage walking the
rest of the way out of the theme park.
Many of you know me and that was unheard of in the last 2 years for me.
Of course I was horrified thinking my scleroderma was launching into
overdrive again and low and behold, I stop the Naprozen and down goes the
swelling and the pain.
I didn't believe this so I resumed the drug after a few months and back it
came.
I see my rheumy in 3 weeks and we'll have to discuss this. I get more
relief now from tylenol or ibprophen. (sp?)
Donna

Hi Everyone
First I would Like to thank Dr. Chiu for your response to my question on
celebrex.
About 3 1/2 weeks ago I met a dear friend in the mall. Seen my cain and
noticed I wasn't walking to well, first question "what is wrong with you?"
next she told me about these tai chi classes her husband and herself had
been going to, this was Sat. on Monday I joined the tai chi class for
health recovery. Tai Chi seems to be helping me. I am feeling a little
stronger, maybe it's wish full thinking because it's only been three weeks,
twice a week, but my hands seem stronger and there seems to be more
strength in my legs. I'll let you know how I'm doing in another three weeks.
Bonnie
RA for 10 years
AP for 1 year
doxy 200mg MWF &celebrex 400mg daily

Good afternoon to all,
I've just started taking Minocycline since last Thursday, 100mg twice a day,
and yesterday was feeling kinda funny. Got really dizzy, kinda labored
breathing (not terrible, but not my normal breathing), and my feet started going
numb and legs got wobbly. Went to the hospital, all they could conclude
was that it was probably a reaction to the Minocycline. They called my
Rheumatologist and he told me to stop taking it immediately. Last dosage
was yesterday morning. Well, today after school, I was getting the same kind
of feelings, but not as bad. Also taking Sulindac. I was wondering two things:
Has anyone else had those type of reactions and what did they do/try
next? And also, did anyone have those type of reactions, and then went to a
smaller dose of Minocycline with positive results and no side effects? I will
add that, even though it was only for only six days, I was feeling the best
I'd felt in months! Something was working for me...Minocycline or Sulindac,
not sure. Thanks for your input!
Ray

Dear Ray,
Too high a dose, too soon. Dr. Brown said "care must be taken to introduce the
antibiotic gradually to avoid an allergic response".
You should start over again, building up slowly something like this:
1st week 50mg Mon and Fri
2nd week 50mg Mon Wed and Fri
3rd week 50mg M 100mg W 50mg F
4th week 100mg M 100mg W 50mg F
5th week 100mg MWF
If all OK, then you can go up in a similar manner to 200mg MWF and see how you
feel. If at any time you can't tolerate any more, then just stay at the dose
you've reached. Using this method, most people can tolerate the minocycline
well. We had one person in this group who could only take 50mg once a week to
start with. After a while he could increase the dose and he has since recovered
from his RA.
The fact that you felt well for a few days seems to indicate that the
minocycline was working for you.
Let us know how you get on,
Chris.
Good afternoon to all,
I've just started taking Minocycline since last Thursday, 100mg twice a day,
and yesterday was feeling kinda funny. Got really dizzy, kinda labored
breathing (not terrible, but not my normal breathing), and my feet started going
numb and legs got wobbly. Went to the hospital, all they could conclude
was that it was probably a reaction to the Minocycline. They called my
Rheumatologist and he told me to stop taking it immediately. Last dosage
was yesterday morning. Well, today after school, I was getting the same kind
of feelings, but not as bad. Also taking Sulindac. I was wondering two things:
Has anyone else had those type of reactions and what did they do/try
next? And also, did anyone have those type of reactions, and then went to a
smaller dose of Minocycline with positive results and no side effects? I will
add that, even though it was only for only six days, I was feeling the best
I'd felt in months! Something was working for me...Minocycline or Sulindac,
not sure. Thanks for your input!
Ray

I saw my GP yesterday and she said that she would like to try Ellavil for
fibromyalgia
pain; which is pretty bad. My osteo-arthritis (knees) is playing havoc with me
this
week; swollen tissue around knee. It is definitely time to get the hyalgan
injections
once again in the knees. They really do help me.
My question is: what do you think about taking the anti-depressant Ellavil for
the chronic pain of fibromyalgia. I would like any comments pro or con.
What does this drug do? Does it block the pain from the brain. Well, I guess in
some way it would have to do that to help??
Thanks.
Martha

Hi,
The same thing happened to me with naprozen and with relafen and
daypro. They gradually stopped working, and I got a lot worse, but I
thought the disease was just getting a lot worse. I also take ibuprofen
for pain now. It isn't fabulous, but it is better than anything I was
taking that has stopped working.
Good luck,
Gloria

been taking it for several months. My Knees and feet after a short period
of time Sitting,seize up. They don't cause me pain while there isn't any
weight on them but getting up is a major effort, once up I have to stand
and wait for a minute before I can shuffle to my destinaton. I am on 200 mg
doxy MWF, 400 mg celebrex daily

Hi Group!
I'm sure we have had this discussion before but per
usual, I missed it. Does anyone have info regarding
use
of NSAID's and pain. I mean increased arthritic type
pain. Particularly in the feet??? I ask because my
pharmascist recently told me about a study that
claimed
some long term/high dosage NSAID's users found that it
actually caused additional pain. I was curious so I
decided to switch from 3 aleve in the am and 3 aleve
in the pm to 2 tylenol arthritis twice a day. Believe
it or not, my feet which have caused me tremendous
grief, are sooooo much better the last two days. I
can't believe it. Now, the problem is that I am also
on the Allopurinol/Metronidazole treatment and have
had some relief from symtoms from that treatment (I'll
give you the update on that treatment in another note,
soon) so I don't have much "control" on this
experiment. Anyone else drop NSAID's after long
term/high doses and find that you have less pain,
especially in your legs/feet??
Hope you all have a great day!!!!!!!!!
Amy
=====

Hi Betty,
Welcome to the group :)
Our doctors either stop the methotrexate before starting the antibiotic, or, if
it is helping the patient, they use both together and then taper off the
methotrexate. As you have already tapered off the metho, then I would have
thought any relapse would have already occurred, and it hasn't.
Click on the button on the main page saying "Medical Histories". Or go directly
to www.rheumatic.org/medhist.htm - there are over 60 on there from memory and
growing.
There is a list of studies carried out at www.rheumatic.org/studies.htm. This
therapy is well-known and increasingly being used these days. We can supply
contacts for doctors using this therapy. Dr. Todd Robinson III in Lakeland,
Florida is using this approach.
There are nearly 400 people in this group, many of whom are in this category.
I'm sure some of them will be happy to talk to you.
Chris.

This girl is severely ill with Chronic Fatigue Syndrome. Sorry I don't have
more details on her case, but do any of you live in New York state near
Rochester? This mother is in that area. She gave me permission to post
her note to the list. I am sure any suggestions would be welcomed, esp docs
in her area.
Paula C.

Dear group,
I must apologise to Cooky. I put her story on our web page very late the other
night and forgot to post it to the group. I think I'm wearing out or my brain's
getting addled or something :)
Thankyou Cooky for writing out your medical history for us. Every story on our
web page reaches so many people who need help. I am very happy that you have
done so well on the antibiotics.
Here is Cooky's story.
Chris.

Hi everyone,
Ethel asked me to write my story for the medical histories page. I
worked very hard on it. She sent me a message tonight that it is finally
up! Let me know what you think.
cooky

<A HREF="http://lovethissite.com/friendship"

Hi all -
Just wondering if anyone has entered into the world of muscle testing and
what their experience has been - for allergies, vitamins, minerals, etc?
Thanks!
LuAnn

Hello to all,
I have been on this list and reading your posts for over a month now but
this is the first time I've decided to join in. My 13 year old daughter was
dx with rheumatoid arthritis this past Feb. We decided not to take the
rheumatologists advice (azulfadene) and instead she's been under the care of
a homeopathic MD and also takes many nutritional supplements like MSM, type
II collagen, boswellin, bromelain, ginger, vit.E, B5, and just recently
we've added naprasyn 250mg 2Xday, and although she sleeps well and tries to
maintain her regular life, as the months have passed we've watched it spread
to many joints and she is in no way in any kind of remission. So I've read
your posts and bios and been to the Road Back site and read the New Arthritis
Breakthrough and though I have some anxieties about this approach (like the
long term use of antibiotics, the IV's, the herx) it does seem to offer some
real hope. My questions are these: does anyone know a doctor experienced
with the AP in the metro New York/southern New England area? Does she have
to be tested for mycoplasma first and what if that's negative is the AP not
appropriate then? Also if anyone on the list has experience with AP and
children, I'd really appreciated hearing from you about how it's going. I've
been so impressed and touched by all of you, your knowledge, your willingness
to share and extend your support and compassion. Thanks in advance.
Sincerely,
Kathy Rosenberg

<A
HREF="http://www.infoworld.com/cgi-bin/displayStory.pl?991013.iimelissa.htm"
lick here: Melissa spawns dangerous offspring (InfoWorld)</A

Hi Tom,
Treatment is continued until symptoms reverse and blood work returns to normal.
Then you stay on a the same dose for another six months. Then you can halve the
dose for another six months and see how you get on.
Some people find they can then discontinue the antibiotic and remain
symptom-free. However, most people find they need to stay on a low maintenance
dose long-term in order to prevent symptoms slowly returning. It's hard to get
rid of those last organisms.
The maintenance dose depends on what dose you're taking for the rheumatic
problem. Everyone is different. Let us know how you're getting on, what dosage
you're taking and how we can help.
Chris.
Question: How long should the minocin treatment be continued and what dosage?
Tom

Hi Cooky,
What's Augmention/Augmentin?
Glenda

This may be of interest to those of you who can get no relief from pain:
http://www.medscape.com/adis/CDI/1999/v18.n03/cdi1803.03.glow/cdi1803.03.glow-01\
.html
Mark

Hi Ana,
Please let us all know what your doctor says/does for your
infection. And when you post, give a little history so the newbies
and we forgitfull ones recall your situation. ;-)
Be well,
Glenda
RA 12/96 , AP 6-99 , Minocin 100 mg 2Xday
On Sun, 17 Oct 1999 00:37:24 -0900 "Ana D. Willson"
<ana@...

Hi all,
This is just a short piece from Nicolson. He clearly states that mycoplasma
is NOT the cause of ALS but may make progression of this disease worse.
Well, you can read it. There is much that is not known about mycoplasma and
our diseases.
PJ
Date : Thu, 06 May 1999 09:32:42 +0000
From : "Prof. Garth Nicolson" <gnicimm@...
Subject: Re: ALS in Gulf War vets
John Pomfret (U.K.) and I have initiated a joint study of ALS Gulf War
veterans, and we would like to obtain blood samples from as many as
possible. Thus far, working with about 20 U.K., U.S. and Australian veterans
we have found that 100% have progressive M. fermentans infections that are
likely to play an important role in their disease progression. These are
complicated cases, and although we do not feel that mycoplasmal infections
are a causative agent, they could be very important in the progression of
the disease and patient morbidity.
We would be very interested in obtaining additional ALS patients in order to
examine their blood for infectious agents. The Institute for Molecular
Medicine and I will take care of all cost for the blood analyses, except for
the cost of drawing and shipping the blood to our facility. Each patient
(and their physician) will be appraised of their results and of the study
results when completed. We are particularly interested in seeing whether we
can arrest or slow the progression of the disease using
therapies developed at the Institute for Molecular Medicine.
Please contact me for further details and information. Please circulate this
information to veterans groups and interested individuals. This will not be
a part of the ongoing VA clinical trial (Co-operative Clinical Study Program
#475) on the diagnosis and treatment of mycoplasmal infections in GWI
patients that just started at 30+ VA Medical Centers and 2 DoD hospitals.
Prof. Garth Nicolson (gnicimm@...)
Chief Scientific Officer
The Institute for Molecular Medicine (website www.immed.org)
15162 Triton Lane
Huntington Beach, CA 92649
Tel: 714-903-2900 Fax: 714-379-2082

Hum....I have a problem in that I have heard Nicolson in person twice and
talked with him on the phone etc, so I don't always remember where I have
heard what or read what. Let me try to state what I have seen and heard more
clearly. I know a case of severe fms which was later diagnosed as MS. So
maybe it was MS from the beginning, who knows? I know a case of fms who
tested positive for mycoplasma incognitus. She was later diagnosed as RA,
and, of all things, she decided there was no point in using antibiotics
since that was not the "drug of choice" for RA. She happily started
methotrexate. Duh! I know of at least 3 Gulf War vets with Gulf War
Illness and a positive PCR for mycoplasma who later developed ALS. I assume
they are dying. I know patients who eventually have their diagnosis changed
to lupus. Indeed, my own doctor says it is quite likely that I will
eventually develop lupus unless some of my current treatments are effective.
I'm sorry that I can't find a quote from Nicolson, not that there might not
be one but I would have to do a lot of hunting. I do know what he has said,
particularly about the Gulf War vets and ALS. Also, there is another
researcher, Charles STratton, who was investigating chlamydia pneumoniae.
He was finding this infection in MS and CFS and FMS. So mycoplasma is
probably not the only infection. I expect all of you are already familiar
with the disaster of chronic Lyme disease - a similar situation. Hope this
helps, and sorry if I confused.
Paula C.

PLEASE CANCEL MY SUBSCRIPTION NOW, THANK YOU.

http://www.foodnews.org/
This environmental site, recommended by Dr. Andrew Weil on the use of
pesticides on apples, is well worth looking at to see what you're eating
along with your apple.
Linda

Dear Rheumatic Group,
I'm not sure exactly how the group operates or just what or how much
information is needed, so I will give you a hopefully brief history of my
rheumatic problem.
In January l994 I was diagnosed as having MCTD. The rheumatoid problems I
have include scleroderma, Reynauds, myositis, and trigeminal neuropothy. The
scleroderma causes my hands to be stiff, swollen, often painful, and I'm
unable to close them; Reynauds causes my hands to be red most of the time and
turn blue when it is cold but very little pain; Myositis as I understand it
is inflamation of the connective tissue in my body and causes various degrees
of pain in neck, shoulders, arms, back, & legs; trigeminal neuropothy has
caused a slight degree of numbness in the L side of my face and Left upper
gum.
In March of 1994 I was hospitalized with Atril Fibrillation, which
doctors felt was caused by the MCTD. They said I also had myocarditis which
was inflamation of the heart muscle. This was treated with .25 mg. Lanoxin
per day, 50 m. Tambocore 2x per day, and I believe 325 mg. Ecotrin per day.
I had been off the Tambocore approximately 2 years when A/F occurred the
second time in July of this year. Cardiologist said it was probably cause
by the MCTD and hardening of the arteries.
I was put back on 50 mg of Tambocore and Coumidan was added -- now 7.5 mg/day.
I have read The Arthritis Breakthrough and have gone to sessions with a
family practice doctor who has explained the Antibiotic Therapy method
used by Dr. Thomas MacPherson Brown and also used by him. I have decreased
the Methotrexate from 6 tablets I have taken for several years down to l
tablet this next week. Then I will call my family practice doctor to explain
how to proceed with the Antibiotic Therapy.
These are the questions and concerns that I have right now:
l. What are the risks of having a severe relapse because the
Methotrexate is not supressing my immune system? My rheumatologist said
this was very
likely to occur. I had one "flair up" when I first reduced the
Methotrexate
from 6 tablets down to 5. There have been no further problems in
the past
4 weeks and next week will be my last week with only l tablet .
2. Are there Medical Histories of those who have used Antibiotic Therapy
rather than
going the drug route? On the "Antibiotic Therapy Online Support Group "
(http://rheumatic.org/support.htm) , page 3 of 4, there is a note "See
their stories
on the Medical Histories page ..." Where do I find the Medical
Histories page?
3. I am taking Coumidan, and I have some concerns about taking Tetracycline
with
it since I have read the two shouldn't be taken together. Has anyone
else had
this problem resolved?
4. Are there research studies available that indicate Antibiotic Therapy is
a better
approach than the traditional medical method ? I need something to convince
my
family and friends that this is not just "Quackey."
It would be great if I could hear from someone who has gone down the
Antibiotic Therapy Road after being on Methotrexate in order to give me some
idea of the road ahead and the hope that there can be improvement with this
method of treatment.
I am eagerly awaiting your repy.
Sincerely,
Betty Ann Mercer
Lake Wales, Florida

Liz,
Yes, I've had IBS for years and trouble with nsaids except the one nsaid
I seem to be able to tolerate, although I take it as little as possible,
is Relafen. Every other nsaid I've tried has left me with my poor
stomach on fire. I have trouble, though, with IBS from the Minocin,
too, which I've kept under control by getting a better probiotic and
reducing my Mino. I've been gradually upping it the last couple of
months and doing better until this week, when I finally took the full
dose again and, ta da, I'm running to the bathroom again today. Now I'm
debating whether to give it another week or cut back 100 mg. Guess it
will depend on how long this goes on. Hope you can find an nsaid that
won't bother you, Liz.
Hugs,
Paula

We received 70 miles per hour wind gusts, and lots of rain, but nothing like
our friends received in South Florida. We are only about 40 miles away from
Jacksonville, Florida and we are about 60 miles away from Daytona Beach
We are in St. Augustine, Florida. Our lights flickered off and on and went
out for a brief few seconds, but no power outages so far.
The wind and rain is still coming, but not as hard. It is suppose to be going
on up
coast now to Savannah, Ga. It is 100 miles off shore (our) right now.
Thanks for everybody caring. Hi Floridians..
and to everyone else in California, earthquake, how is in in L.A. area. I am
glad
that it was the desert that got in strongest. And snow in Colorado. wow.
Martha Smith

Interesting. I too have had intestinal problems since
puberty. When I was twelve I spent 3 months at a school
in Mexico. I came home and told my mother that was stomach
wasn't right. The doctor said all was okay. Since that
time I have had food sensitivities, lactose intolerance,
was diagnosed in my twenties with spastic colitis. Went to
Asia for 6 months in my early 30's and came back with
lots of intestinal bugs. BUT, so did my husband. We both
treated them extensively. He never had any symptoms from
those bugs, but shortly after that,(or possibly before Asia
as I had one incident of inflammation treated with cortisone),
I developed a wide array of inflammatory symptoms. I have
continued to have intestinal problems off and on, without
the diagnosis of bugs. Since I started the minocin 1 month
ago, my intestinal problems have quieted down immensely.
Conversely, my inflammation has flared up intensely.

Hi Bev,
I intend to ask the Rheum. D at the next appointment.
Will share that with all of you when I know.
Glenda
RA 12/96 , AP 6-99 , Minocin 100 mg 2Xday
--------- Begin forwarded message

1999 ACR Abstract
[953] THE TREATMENT OF JUVENILE RHEUMATOID ARTHRITIS (JRA) WITH BORAGE
OIL. D Rothman, J Nocton, B Ostrov, B Bloom, J Olson, L Zemel, R Zurier.
Springfield, MA, Worcester, MA.
The purpose of this study was to evaluate the use of borage oil, which
contains the fatty acid gammalinolenic acid, in the treatment of JRA.
The study was double-blind, placebo controlled (safflower oil) of 12
months duration, with either placebo or borage oil for the first 6
months and crossover for the second 6 months. Children had active JRA by
ACR criteria. All children were on at least one concomitant medication.
Borage oil was given at a dose of 40 mg/kg/day BID.
Thirteen children received borage oil first and 15 children received the
placebo first. P- values are based on one-tailed paired t-tests.
Patients had lower (better) scores on borage oil than on placebo for all
outcomes except number of tender joints. This was significant for both
physician's global assessment and the number of joints with active
arthritis. The effect of borage oil was stronger for patients with
polyarticular JRA than for patients with either systemic JRA or
pauciarticular JRA.
No significant adverse effects were reported and the oil was well
tolerated.
ACR Poster Session D: Pediatric Rheumatology II (12:30 PM-2:00 PM)
Presentation Date: Monday, November 15, 1999, Time: 12:30PM, Room: Hall
D

Hello all,
Does anyone know any useful information about the substance or has anyone
used it before? I am interesting in trying it.
Thanks,
Leslie

Sorry Tony I was having a bad day. Im not sure a mail rule would work
with this being a list from onelist. Im finding it easier to not get the
mail and go to the onelist archives when I want to read things
Sarah
--
Clark Signs:
http://members.xoom.com/sclark/
AP Support Group:
http://www.geocities.com/SoHo/Gallery/6412/
Lots of arthritis and health links:
http://www.geocities.com/SoHo/Gallery/6412/supportlinks.htm

My RA doc went over my lab results- RA factor 1550- and he said that the
numbers are not important. This test is either positive or negative. If the
numbers go up, it actually has nothing to do with disease progressing. MY RA
was worse than ever during the month of the blood test! I told him that I
understood that RA factor helped gauge success on AP. Now he does not
believe in AP but isn't argumentative in any way. * He also said I will
never have a negative RA factor once the antibodies have accumulated at any
point. He believes that this test should not be repeated because it is
useless once the disease has been established.
He also told me it is impossible for anyone to have RA and lupus at the same
time.
Comments , please!!!
Carol*

Grp:
After the discussion on the correct meds for different mycoplasma's - I am
totally confused. Is Doxy the right drug for RA- when blood tests shows a
very low level of mycoplasma pneumoniae? Or should I try a macrolide?
Thanks,
Carol*

This was sent to me by someone and I thought it was cute.
As I live inKey West, I stopped doing what was correct & proper long
ago.
But, thought you'd enjoy reading it.

I just read an article about James Coburn and his 20 year struggle with
RA.
In this article, he says that his pain stoped for the first time in 20
years
with MSM.
Has anyone else taken this? Does it help?
Delaine

SUSAN - I have the answers you put to my sister re. thyroid. I don't have your
email address..........could you get back to me so I can send this info on to
you. Sorry it took so long..........
Be well, Joey

Hi Group,
The common connection for all of us suffering auto-immune
diseases seems to be infection, regardless of
where it may be located in the body.
For 9 months before being
diagnosed with RA, I whined to the General Practitioner, then
to the ENT specialists, then back to the GP and was diagnosed
for a sinus infection. For my trouble,
they subscribed short spurts of antibiotics, which cleared up the
sinus infection for a short time, then it came back.
I STILL have the sinus infection, duration about 3 1/2 years.
I tried the high dosages of Vit. C
for one day, recommended by Carol/Piney/Canada but it did not
work. Anyone have any other ideas? I next see the Rheumy. in Dec.
The sinus infection seems to be getting worse. :-(
Be well,
Glenda
RA 12/96 , AP 6-99 , Minocin 100 mg 2Xday

We've all read postings from Ethel regarding the importance
of good intestinal health. As I think back on my own health
before RA, I definitely remember having lots of gastric
problems that seemed to be triggered by stress. I remember
going to the doctor and getting Zantac prescriptions. I
even had a test once where I was anesthised (sp) and they
ran a little scope down to take a look at my stomach and
another one where I drank that awful berium and the doctors
watched it go down. No problems found.
Now with RA and learning all about how important it is to
have a good digestive track and bowels, I'm really wondering
if maybe all those digestive problems somehow, through
poorly digested food bacteria or whatever, could have set me
up for RA. I still seem very suseptable to gastric distress
and bowl problems but I'm working on improving that via diet
(off and on), slippery elm, olive leave extract (which
doesn't seem to do much) and most recently hydrochloric acid
along with enzymes (which seems to help a lot).
I'm still in Internal Medicine 101 and don't have all the
answers but something tells me these connections could all
be very possible. (Seems like I remember my grandmother,
who had arthritis and then got cured, had some digestive
problems too...lots of belching.)
I'd like to know if there are any of you out there that have
had any similar experiences with digestive problems prior to
onset of arthritis. I doubt if we'll uncover any mysterious
cure by doing this - I'm just curious.
Lea

I've tried to open a message entitled RE: About Katherine
K. that came in Thurs 19:14 from Katherine. Everytime I
click on it my computer says I've performed an illegal
function and it shuts itself down. Any suggestions from the
computer gurus in the group?
Lea

Just a test...seems like all my messages are getting rejected by the server.

Thank you.
LynnlR@...

Hi all,
If you don't like research just delete this one, but I thought some of you
might enjoy this. If you take time to read it, it will help you see the
overlap between CFS and RA. I think we all belong on this list.
Paula C.

Hi Judy,
My uncle had EXACTLY the same thing you have in exactly the same place.
He went through a lot of pain and sleeping in the recliner, like you.
He had the surgery-it went smoothly and gave him blessed, immediate
relief. He said afterwards that had he known how immediate and thorough
the relief would have been, he wouldn't have kept putting off the
surgery.
"Best thing I have ever done", he said.
I wish for you the same relief,
Be well,
Glenda
RA 12/96 , AP 6-99 , Minocin 100 mg 2Xday
--------- Begin forwarded message

http://www.immed.org/prod/chronic/chronic.html#R35
This URL is a list of research articles primarily of Dr. Garth Nicolson
relating mycoplasma to several illnesses including rheumatoid arthritis. If
you look at the article by Baseman and Tully you will read a government
research article.
Paula C.

In today's mail I received a "phone-a-gram" from the U.S.
Marines......seems they want to talk to me about the challenges that the
Marine Corps has to offer. Hmmmm...makes me wonder what they want with
a 45 year old with a muscle disease? I guess they'll take anyone :-)
My husband says that I should pay them a visit :-) Maybe I will.
oh well, it certainly gave me something to smile at today. Connie

Hi Group:
I have been unsubscribed for several months and have really missed you
guys. I realized how much when I needed to ask some questions regarding
a trip to the orthopedic surgeon this week.
For several weeks, I have been unable to lay on either side because it
made my left hip, knee and ankle hurt so badly. Laying on my back was
the only way to get any relief and that was only a short time. Then my
back would start to hurt. I slept in the recliner for several weeks
before my Rheumatologist injected the bursa area on both sides. He said
the schiatic (sp?) nerve was my problem. I also had an appointment with
my orthopedic doctor and he x-rayed it and found a calcium deposit in
the nerve channel next to the last one of my spine. The deposit has
almost filled that area and is pressing on the nerve. The Dr. said I
have already lost some of my reflex motion of that leg (I have a
prosthesis in that hip also). If the nerve is damaged more, I may lose
the muscles in that leg. I have an MRI Tuesday to give more detail and
then we will talk about the next step. I'm pretty sure it will require
surgery and I am extremely nervous about that. (It will be my 13th).
Anyone out there with any experience in this area? If so, I would love
to hear from you.
Hope everyone had a pain free summer. As you can tell from the above,
not so for me. I'm still on the Mino and have just started back taking
Plaquenil. My hands are much worse and the pain has been horrific. The
only thing good has been my energy. Which I needed a lot of. My
daughter's wedding was Sept. 11, and she also built a house which had to
be decorated before the wedding. So it has been none stop running for
me. But I enjoyed every min. of it.
Take care and will enjoy hearing from the group again.
Judy in SC
RA 42 yrs, Fibro 17 yrs, Mino 3 yrs.

If you have time, Joanie's Bio is now posted and is well worth the read. I tip
my hat to her courage!
http://www.onelist.com/files/rheumatic/Biographies/JoanieFoppiano.htm
Mark

This site was recommended in Dr. Mercola's last newsletter as well.
Linda
Wonderful Natural Medicine Web Site:
Please book mark the following in your web browser. Vitalcast has about 40
of the top natural medicine radio broadcasters in the country. Their past
three radio shows can be listened to on their site through Real Audio or the
Microsoft equivalent. I have been writing for them for the last several
months and this newsletter provides the weekly medical update for this web
site. I really believe it is one of the best natural medicine web sites on
the Internet which is why I am associated with them.
http://www.vitalcast.com

This was in Dr. Mercola's last newsletter.
Linda
Dr. Mercola Personal Consultations
The most important step you could take for improving your physical health
would be to go to Dr. Mercolas web site at www.mercola.com and apply the
recommendations under the tab on the left Read This First. That is the
essential first step. If your health problems are not better and you are
unable to find a physician to implement Dr. Mercolas recommendation, he
accepts new patients who are willing to make the dietary changes necessary
to reverse chronic illness. He sees many patients from out of state and his
staff can coordinate a visit for you. Dr. Mercola will also be doing phone
consultations for the last two weeks in January. To schedule one for
yourself, you may call Denise or Jennifer, the new patient coordinators, at
847-985-1777.
Personal Question Policy
Although Dr. Mercola is not able to personally respond to all personal
medical questions and e-mail, questions and comments are read and taken into
consideration in the content for this newsletter.

Hello all my friends :-)
I got this off from a friend and wanted to share the Halloween spirit with
you. I think you will like it :-) It is a fun site for kids and adults!
Love, Kelly Pritchard
Happy Halloween season! <A
HREF="http://www.angelfire.com/ny3/BronxZoo/Halloween1.html"
Pumpkins</A

I am away for a week.

piggybacking onto your rule idea, Tony.
Jean

unsubscribe to rheumatic onelist

http://inet.uni2.dk/~iirrh/arthritis.htm
I found this when I was looking for info on RA Factor. I just got my
lastest labs back and I swear that lab is trying to drive me crazy--they
switched how they report the results AGAIN. My first test showed the RA
as 1:20 the second test was 301 so I had a third test jus 2 months after
the second to see if I was going up or down so now they report it as 1:8
so I still have no idea what's going on. My sed rate was 7 thou so
that's good news.
Julie

Hello to all my friends in the group,
This is a message I have received from one of my dearest friends, which some
of you know well.
My heart aches to see what Katherine is going through. Unfortunately the AP
was very much too late for her. I feel really angry how medecine has let her
down. This is what the extreme is when these docs boost you over the years
with steroids. You become sooooo brittle, you break apart like a porcelaine
doll.
I admire Katherine's courage and willpower to continue through life as she
has. If you would meet her in person, she is a loving, most kind person
anyone can meet. I take her as my sister and I wish I could change things
for her, God only knows she deserves alot more than all of this misery and
pain.
I, myself, have had some hard times lately but yet I would give anything to
give katherine a little bit more of happiness. It would be worth it.
So, if in you're hearts, you can find a spot to say a few words or prayers
to help Katherine have some more strength for what lies ahead.
Thanks so much, hugs to all.
Kathryn

My husband was diagnosed with RA, and although he has tremendous pain
and swelling in h is joints, the test results for RF and sed rate are
within the normal range. The only test abnormal is his protein level
which is extremely elevated. I am now wondering if it is really RA or
something else, but he has tremendous faith in his RD....has anyone else
gone through this? Thanks, and God bless each of you. Sandee

To unsubscribe, punch the live link below. If it doesn't show up as a link,
copy it into the T0: box on a blank message. Once the message shows the
address below in the TO: box, send it. That should get you off the list.
rhuematic-unsubscribe@onelist.com

PLEASE TAKE MY NAME OFF THE RHEUMATIC ONE LIST111
PLEASE SHIRLEY DITTMER
sammysue@... Thanks

Hi All,
Just wanted to report that I found a AP Friendly Rheumy in Richmond
Vancouver. He is a realitively young guy by the name of Shojania. He is open
to the Antibitic protocol and is even willing to try the IV therapy since it
has helped my arthritis in the past.
If anyone is looking for a Rheumy in Vancouver BC., direct them to Dr.
Shojania. (604) 273-8085
I'll keep you posted if I find more AP Friendly Drs.
Thomas

Thanks to all of you that responded concerning Dr.Kempf. Once again it
sounds as if he is not consistent with his patients. Are we all talking
about the Dr. Kempf at the Arthritis Clinic of Northern Virginia?
Laura H

Has anyone been able to get rid of a Candida infection while on the AP? I'd
appreciate any suggestions. Thanks, Deb

Can anyone help, please?
My finger got caught in the car door resulting in inflammation and the doc
thinks it's become slightly septic and has recommended a 7-day treatment of
Vibramycin. Since I am on the AP of Minocin 100mg MWF since last August
98, do I start this additional antibiotic treatment? If so, do I stop
Minocin and if I do stop, will it adversely effect my RA?
For my own knowledge, I would like to know whether a different antibiotic
or any other treatment can be taken for an illness by an RA patient who is
on AP?
Speedy recovery to all,
Zanash

I have just signed on to the list and it seems very informative. I was diagnosed
with R.A. two years ago and have been on minocin and voltarin since then.
Initial dosage was minocin 100 mg 2X per day and voltarin S.R. 75 mg 2X per day.
I have decreased the dosage of both drugs in half over the past 6 months. Last
blood work was normal and I am feeling great other than minor stiffness in the
morning.
Question: How long should the minocin treatment be continued and what dosage? TI
TIA
Tom

Here's an interesting article on mycoplasmas from Dr. Nicolson in case you
missed it.
http://www.immed.org/prod/research/fmsc.html
Mark

Hi group,
Susie here. I sent a question to the group regarding a product
called arthro 7.
I was looking for someone who has tried it. Some of you thought this may have
been a cream. It's not , it's a capsule containing seven different ingrediants.
I just recieved my order in the mail. Several of you wanted to know where I got
it from and I will post the address of the co. at the end of this message. I
still would like to know if anyone has tried it. I know many of you are taking
some of the ingrediants already. The ingrediants are listed as collagen II,
vitamin C , MSM, CMO, Lipase, bromelain, and curcumin.
It comes with a book describing the ingrediants and what each is for and also
lists the studies and trials for each, and this product. I know there are many
costly products out there , but this was given to me as a gift by my dad . He
knows I was advised to go on methotrexate and really don't want to. We figured
these natural products , if they help at all ,have got to be way better than the
alternatives.Any comments or suggestions are welcome from all. I'll keep posted
on how it's working . Good health to all.
Thanks a
bunch,
Susie-Q
ARTHRO 7 from: GERO VITA LABS
4936 yonge street
Toronto, Ontario M2N6S3
Canada
Customer service @ 1-888-755-6659 24 hrs

Hello to all! Had my appt yesterday and the Doc is starting me on Minocycline
at 200mg a day. Also it is a generic brand (only thing the military hospital
carried). Will be taking it along with Clinoril and continuing Glucosamine
Sulfate, and Flax seed oil. Is the generic Mino as good? Based on reading, I
thought 200mg a day to start might be excessive, but my doc assures me I have a
bad case. Was also informed that they showed a couple of nodules on my right
lung and a little hardening of the underside of my left lung. Has anyone
experienced this, and will the Minocycline help this? Doc has ordered a
Floroscoup(sp?) xray to look at this further. Thanks for your comments!
Ray

In a message dated 10/14/1999 1:35:37 AM Central Daylight
<< Hello....I am not certain I am joining the correct list. Could someone
help me?
I am Bonnie, my husband (36yo) has been told he had arthritis often in the
past few years. He has chronic back and leg pain. He is not one to see a
dr. Abouot 2 mos. ago he went to family physician who diagnosed it as
RA. He was given Relafen 750 mg. 2 tablets once daily. He did not finish
taking meds. he works out of the country for 30days and home 30..He has been
sick with swollen ankles, "new" back pain, wrist pain, fever, and all-over
tered and in pain. Dr. in Ecuador first said "gouty arthritis" next one said
Rheumatic fever, 2 days ago. He is on his way home and we will see dr.
here tomorrow. I have been reading and it seems to be hard for dr. to give
accutate as symptoms are so similar.
Any thoughts or advice to help us know more how to deal with this?
Sorry this is so long, I am panicky.
Thanks.....Bonnie

Please take my name off the list Thanks Shirley Dittmer

Hi,
Some of you know that in spite of severe, aggressive RA, I had
excellent results from mino. by itself in a matter of 3 1/2 months.
However, I had a headache that constantly felt like my head was going to
implode. The rheumatologist told me to stop. My my, what a surprise!
Well, the headache went away in two weeks as the mino left my system.
Mon., I went to the opthamologist and I asked about BIH. He told me
that any physician can look to see if the optic nerves are swollen. So,
the rheum. could have checked :-( I did not know about BIH until after
the visit and I heard about it from this list.
He said the signs are headache, then blurry vision.
I am sending this so some of you might benefit from this info.
I am taking doxy 100mg as of two weeks ago. I worked up from 50mg
once/week since June. My optic nerves are ok and no glaucoma. Keep
your fingers crossed that this works for me the way mino did without the
side effects.
HTH
Denise
NC

HEY - Hi there group - most of you won't remember me because I'm one of
the ones who have recovered and am back to living a normal life. My
story is online - check it out. Diagnosis - Dermatomyositis, Fibro,
Sjogrens, Raynauds. The really great news is that I'm 90% recovered -
I'm dancing "the swing", swimming, walking briskly for an hour, working
out at the gym - treadmill/cross trainer, taking art and cooking lessons
and basically bright and cheery - my old self. In 1996 I was diagnosed
and commenced traditionally therapy - methotrexate and steroids. These
drugs did not serve me well so I stopped taking them - many serious side
effects. In 1997 I started on Doxycycline and Clindamycin IV's,
supplements and Mercola's diet. Now 1999 I'm doing great and have my
life back. For any of you "newbies" wondering whether this therapy
works and what is in store for you several years down the road - I'm
living breathing proof of the possibility.
I hear from a number of people with this disease online - any referrals
are welcome. I do have a question regarding doctors doing AP. Does
anyone know of one near Hudson, Ohio? Please email me - I'm back with
with the group for awhile. Any other questions feel free.
The Fairylady
DM 1994
started AP 1997
90% recovered 1999

Propulsid gave me severe broncospasms. That is listed as one of the
possible side effects. I do better managing my reflux with diet and an
occasional zantac otc
or tums.
--
Clark Signs:
http://members.xoom.com/sclark/
AP Support Group:
http://www.geocities.com/SoHo/Gallery/6412/
Lots of arthritis and health links:
http://www.geocities.com/SoHo/Gallery/6412/supportlinks.htm

Please unsubscribe to rheumatic onelist

THis is the wrong email addresss: Please transfer my subscription to:
NMX111@...
Thank you,
Julie

I have spoken to Dr. Kempf's office and understand he will consider treating
a child. However,I have some reservations since I have seen conflicting
reports on Dr. Kempf. Does anyone out there have any opinions?
We have an appointment with Dr. Franco, but Virginia would be alot closer.
Hescock @aol.com

Hi Group:
Somewhere in Dr. Mercola's web site is information on oil of oregano. He
says it has powerful anti-inflammatory qualities. Based on this info alone
I brought some home from the health food store.
Instructions on the bottle said to use 4 drops "in a small amount of water"
up to 3 times a day. Assuming that "a small amount of water" was a teaspoon,
I carefully put 4 drops in the spoon. I noticed the oil floated on top of
the water just before I downed it.
Wow....It was like firewater. Burned all the way down and burned in the
stomach when it reached there.
Next time I put the 4 drops on a heaping tablespoon of food somewhere about
the middle of a meal. Did not burn as much but the taste lingered nearly to
the end of the meal.
I would like to try this out for a few days at least to see if it really is a
good antiinflam. Can anyone tell me what to dilute this with so I can get it
down?
Thanks in advance,
Harry

The Antibiotics for Rheumatic Disease Support Group of Western North Carolina
will meet Thursday, Oct. 14, 7 p.m., at Asheville-Buncombe Technical College,
25 minutes from Asheville, N.C.
For more details, please contact Sue Estridge at:
Sue_Estridge@...
--
Susan S Estridge
E-Mail : sestridg@madison
Internet: Sue_Estridge@...
Phone : (704) 649-2411
FAX: (704) 649-2020
---End of forwarded mail from "Susan S Estridge"
<sestridg@...
--
Susan S Estridge
E-Mail : sestridg@madison
Internet: Sue_Estridge@...
Phone : (704) 649-2411
FAX: (704) 649-2020

I've been working my ASO down from
using ERYBID (Erythromycin) 2xday MWF.
I stopped the ERYBID 3 weeks ago to start Clindamycin IV immediately.
I had my blood checked last week and ASO is back to 200! What is going on?
My pharmacist felt that stopping ERYBID would not cause the strep to shoot
back up over a period of 3 weeks! (It should only climb slowly if at all).
What could cause this? Should I try a different antibiotic after the IV's ?
(One should not take Clindamycin with Erybid)
Thoughts?
Thanks,
Mike

Here is that site I told you about.
Donna
http://www.convatec.com/wound2/healing/wscase1.htm

The good news is I am starting the AP. The bad news is I've got a 3+ Candida
infection. From previous experience, I get a major herx when combating Candida,
and I don't want to get confused between Minocin dosages and anti-fungal
dosages. So I was thinking I should get the Minocin dosage down (or up) to 200
mg. before starting the anti-fungals. Sound reasonable? Deb

Hello to all,
I've just found your list, and the reading has been extremely interesting. I
have had RA for @ 4-5 years now and have kept it under control with a daily dose
of Glucosamine Sulfate. Starting to get worse in foot and hands. I have a
follow up appt with my Rheumatologist soon, and would like to approach him with
the treatment plan of antibiotics, instead of what they were wanting me to go
on, Methotrexate or Plaquenil. Can anyone give me good advice for approaching a
doctor who probably will not go for antibiotic treatment??? And secondly, is
there anyone in the group that is in the military that is receiving Antibiotic
treatment? Any advice you can give is greatly appreciated!
Ray

I picked this up from the alt.support.arthritis newsgroup and thought some here
might be interested:
51st Annual American Academy of Family Physicians Scientific Assembly
[Medscape, 1999. © 1999 Medscape, Inc.]
Herbal Therapies
Steven B. Tamarin, MD
Complementary and alternative medicine are of keen interest to patients,
who often come to their physicians with questions about the
effectiveness of a broad range of "natural" remedies. Several
presentations at this year's AAFP Scientific Assembly addressed this
topic, including 2 seminars on medicinal herbs.
One presentation, by Ellen Hughes, MD,[1] associate professor of
medicine and interim director of the Oscher Center for Integrative
Medicine at the University of California, San Francisco, was canceled
because of Hurricane Floyd. However, her handout was made available to
attendees. The other presentation was by Raul Zimmerman, MD,[2] a
clinical assistant professor of family medicine at the University of
South Florida College of Medicine.
A Long History
Plants have been used for their medicinal value for thousands of years.
Most early medications and approximately 25% of our current
prescriptions are plant-based. Botanicals have been used as medication
in this country, although their use has been confined to rural and other
discrete areas. In Europe, notably in the United Kingdom, Germany, and
Japan, naturopathy, or the treatment of diseases using plant-based
therapies, has achieved the status of an accepted discipline. In these
countries, students are formally trained in the discipline and the
quality of herbal medications is regulated as much as we monitor
pharmaceuticals in this country.
Scope of Use
Americans spent more than $4 billion on herbal medications in 1997.[3,4]
It is estimated that in 1993, 60 million Americans used alternative
therapies at a cost of $13.7 billion. Many of these patients use herbal
preparations in addition to prescription drugs; approximately 70% never
mention it to their physicians.
Whether or not physicians believe that herbals have value, patients are
using them. The AAFP presentations underlined the need, therefore, to be
informed about the risks, benefits, interactions, and science related to
the use of these substances.
Are Herbal Therapies Safe?
A question raised in both presentations was whether herbal preparations
are safe and effective. Prior to 1994, herbs were in a "nether" category
between medication, which is regulated by the Food and Drug
Administration (FDA) for safety and efficacy, and food, which is
regulated for manufacturing standards and safety. Herbals were not
consistently in either category and so the FDA proposed to regulate food
supplements including herbals.
A public relations campaign by the supplement industry followed, which
included deluging Congress with 4 million letters and faxes and
commercials portraying FDA supplement policy as overly harsh. Thus, the
Dietary Supplement Health and Education Act of 1994 was passed. This law
classifies vitamins, minerals, herbs, and amino acids as dietary
supplements and frees their manufacturers from having to test for or
prove safety, efficacy, or standards of manufacturing.
In fact, the FDA must prove that a product is unsafe. This has led to
several examples of how consumers have been put at risk by use of
certain supplements. One example was the contaminated L-tryptophan that
caused fatalities related to the eosinophilic-myositis syndrome.[5]
There also have been reports of intentional contamination by analgesics,
steroids, and sedatives and other undeclared prescription medications
for a more dramatic effect.[6,7]
What Now?
So where does that leave the physician who would like to recommend
botanical remedies to patients that prefer them to medications with
known adverse effects?
It has been widely assumed that there is no science to support the use
of herbals as medications. Until recently, the literature indeed has
been scarce, particularly with regard to solid clinical studies. In
fact, now there is a large body of European and Japanese literature that
assesses the medical use of a number of herbals.
One of the most useful compilations is the Report of the German E
Commission, recently translated, and now published in English by the
American Botanical Council 1997.[8] This commission included physicians,
pharmacists, toxicologists, and botanists, who wrote approximately 400
monographs between 1978 and 1994. They evaluated the available data and
determined whether there was reasonable certainty of the safety and
efficacy of the medicinal use of the plants studied. They also
established standard preparations and doses.
In the US, Congress has created the National Center for Complementary
and Alternative Medicine,[9] which is translating data and coordinating
study centers throughout the United States to review a variety of areas.
Another useful source of information is the US Department of
Agriculture's phytochemical and ethnobotanical database.[10]
Increasingly, studies of herbal preparations and their effectiveness --
or lack thereof -- are being published in peer-reviewed medical
journals.
Clinical Applications
The speakers at the AAFP meeting reviewed the clinical use of the most
popular herbs with data supporting their use as well as underscoring the
need for caution.[11,12]
Dr. Zimmerman discussed some well-documented drug-herb interactions.
Nonsteroidal anti-inflammatory drugs may negate feverfew, for example,
echinacea can potentiate the toxicity of hepatotoxic drugs, and ginkgo,
ginger, and ginseng should not be used with coumadin due to their
anticoagulant effects.[13,14]
Citing a poll in Good Housekeeping Magazine and data from herbal
manufacturers, Dr. Zimmerman cited the most popular herbs now in use:
ginseng, garlic, ginkgo biloba, echinacea, St. John's wort, goldenseal,
saw palmetto, aloe, Siberian ginseng, pycnogenol/grapseed extract, and
evening primrose oil.
One of the most popular and widely used herbs is St. John's wort, which
is reported to be effective for mild to moderate depression and to have
few adverse effects. The dose is 300 mg 3 times daily as .3%
hypericin.[15]
Ginkgo biloba has recently become popular following reported modest
improvement of cognitive functioning in some people with dementia caused
by Alzheimer disease or cerebrovascular disease. In addition, ginkgo is
used for sexual dysfunction caused by selective serotonin reuptake
inhibitors and in peripheral vascular disease. The dose range is 80 to
240 mg/day 2 or 3 times daily.[16]
Kava kava is used for anxiety, insomnia, and muscle tension, but there
is concern regarding drug and alcohol interactions, and a yellow scaly
rash has been reported at high doses (
times daily of kava extract WS 1490.[17]
Studies indicate that saw palmetto is safe and effective for the
symptoms of benign prostatic hyperplasia. The usual dose is 160 mg of
standardized extract containing 85% to 95% fatty acids and sterols
(Permixon) 3 times daily. The main adverse effects are
gastrointestinal.[18,19,20]
Echinacea is used for short-term treatment and prevention of respiratory
infections. There are numerous preparations and doses.[21,22]
Some data support the use of milk thistle as a liver protective in mild
cases of alcoholic cirrhosis.[23]
Garlic is used to improve lipids and hypertension.[24,25]
Feverfew is used for the prophylaxis of migraine and cluster
headaches.[26]
Finally, ginger is used as an antiemetic, especially in pregnancy.[27]
Summary
As more data regarding the safety and efficacy of herbal preparations
become available, especially in the prestigious peer-reviewed
literature, and as more standardized preparations from reputable
manufacturers come to the market, perhaps physicians will be in a more
comfortable position to inform patients about the appropriate use of
botanical medicinals.
References
Hughes E. Botanicals: what are your patients taking? Programs and
abstracts from the 1999 Scientific Assembly of the American Academy of
Family Physicians; September 16-19, 1999; Orlando, Fla. Abstract 503.
Zimmerman RL. Herbal therapies: new for 1999. Programs and abstracts
from the 1999 Scientific Assembly of the American Academy of Family
Physicians; September 16-19, 1999; Orlando, Fla. Abstract 033.
Astin JA. Why patients use alternative medicine: results of a national
study. JAMA. 1998;279:1548-1553.
Johnston B. One-third of nation's adults use herbal remedies: market
estimated at $3.24 billion. Herbalgram. 1997;40:49.
Ko RJ. Adulterants in Asian patent medicines. N Engl J Med.
1998;339:847.
Gertner E, Marshall PS, Filandrinos D, Potek AS, Smith TM. Complications
resulting from the use of Chinese herbal medications containing
undeclared prescription drugs. Arthritis Rheum. 1995;38:614-617.
Slifman NR, Obermeyer WR, Aloi BK, et al. Contamination of botanical
dietary supplements by Digitalis lanata. N Engl J Med. 1998;339:806-811.
Blumenthal M, Busse WR, eds. Klein S, trans. German Commission E
Monographs. Austin, Tex: American Botanical Council; 1997.
Available at: http://altmed.od.nih.gov.
Available at: www.ars-grin.gov/duke.
O'Hara MA, Kiefer D, Farrell K, Kemper K. A review of 12 commonly used
medicinal herbs. Arch Fam Med. 1998;7:523-536.
Varro T. Herbs of Choice: The Therapeutic Use of Phytochemicals. New
York, NY: Pharmaceutical Products Press; 1994.
Miller L. Herbal medicinals: selected clinical considerations focusing
on known or potential drug-herb interactions. Arch Intern Med.
1998;158:2200-2211.
Cupp ML. Herbal remedies: adverse effects and drug interactions. Am Fam
Physician. 1999;59:1239-1244.
Linde K, Ramirez G, Mulrow CD, Pauls A, Weidenhammer W, Melchart D. St.
John's wort for depression; an overview and meta-analysis of randomized
clinical trials. BMJ. 1996;313:253-258.
Le Bars PL, Katz MM, Berman N, Itil TM, Freedman AM, Schatzberg AF, and
the North American EGb Study Group. A placebo-controlled, double-blind
randomized trial of an extract of Ginkgo biloba for dementia. JAMA.
1997;278:1327-1332.
Volz HP, Kieser M. Kava-kava extract WS1490 versus placebo in anxiety
disorders: a randomized placebo-controlled 25-week outpatient trial.
Pharmacopsychiatry. 1997;30:1-5.
Carraro, JC et al. Comparison of phytotherapy (Permixon) with
finasteride in the treatment of benign prostate hyperplasia: a
randomized international study of 1,098 patients. Prostate
1996;29:231-240.
Wilt TJ, Ishani A, Stark G, MacDonald R, Lau J, Mulrow C. Saw palmetto
extracts for treatment of benign prostatic hyperplasia: a systematic
review. JAMA. 1998;280:1604-1609.
Lowe FC, Ku JC. Phytotherapy in treatment of benign prostatic
hyperplasia: a critical review. Urology. 1996;48:12-20.
Melchart D, Linde K, Worku F, et al. Results of five randomized studies
on the immunomodulatory activity of preparations of echinacea. Altern
Complement Med. 1995;1:145-160.
Melchart D, Linde K. The Cochrane Collaboration Database of Systematic
Reviews. Jan 1999. Available at:
http://hiru.mcmaster.ca/cochrane/default.htm.
Flora K, Hahn M, Rosen H, Benner K. Milk thistle (Silybum marianum) for
the therapy of liver disease. Am J Gastroenterol. 1998;93:139-143.
Isaacsohn JL, Moser M, Stein EA, et al. Garlic powder and plasma lipids
and lipoproteins: a multicenter, randomized, placebo-controlled trial.
Arch Intern Med. 1998;158:1189-1194.
Berthold HK, Sudhop T, von Bergmann K. Effect of a garlic oil
preparation on serum lipoproteins and cholesterol metabolism: a
randomized controlled trial. JAMA. 1998;279:1900-1902.
Murphy JJ, Heptinstall S, Mitchell JR. Randomised double-blind
placebo-controlled trial of feverfew in migraine prevention. Lancet.
1988;2:189-192.
Aikins Murphy P. Alternative therapies for nausea and vomiting of
pregnancy. Obstet Gynecol. 1998;91:149-155.
Copyright © 1994-1999 by Medscape Inc.
Mark
http://Mark_Holmes.tripod.com
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day MWF;Methotrexate (10mg/once weekly);
folic acid (1 mg/day); Lodine 400mg 3x/day;Zone Diet;;Slippery Elm;Fish Oil(9
caps/day);acidopholus;Milk Thistle;bromelain;glucosamine(1500mg);MSM (2G/day)
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html
ICQ 18123139

Dear Group,
I have been away and I am having computer problems so forgive me for not
being active on list! I am back and computer is still crazy but am awaiting
refund and hopefully will replace. DO NOT GET A GATEWAY LAPTOP!
Anyway, saw doctor and got good news. Rheumatoid factor still 161 ,down from
290, but sed is now lowest since I became symptomatic ...it's 27.
I pray I continue to progress and am grateful beyond words to Dr. Brown, this
group, and my own doctor for prescribing and believing.
Susan

Patti,
Probably the best way is to hit "reply" and then cut out the person's name
and put one list in their place. if you cc the list, the person is going to
get the message twice. We're all guilty of doing this from time to time, so
don't feel bad if you forget.
The Digest mode is a way of getting emails that are sent to the list as one
BIG email sent anywhere from 1-3 times per day. Each Digest will contain up
to 25 messages. This saves you the hassle of opening each individual email
that lands in your inbox. However, you get the Digest messages later and it
makes replying in a timely fashion a bit more difficult. Still,it may be
worth it if you're drowning in email. You sign up for the Digest by going to
www.onelist.com and then clicking on "My Onelist" on the left hand side of
the page. That will show you the lists you belong to and to the right of the
"rheumatic" list, you will see a drop down box that will allow you to pick
between individual emails, Digest, unsubscribe, or no mail at all which
means you won't get any emails, but you can go to onelist and read the
archives (the current day's archive can be found at
http://www.onelist.com/messages/rheumatic and previous day's messages can
be found in the small box on that page which says Messages - Archive. This
is a nice feature for when you are out of town - you can select No Mail and
if you have acce