Auto-immune diseases

Amy is up in the support group pictures now.
http://www.geocities.com/SoHo/Gallery/6412/supportgroup3.htm
Amy let me know if your email on there isnt right. I mailed your picture
back to you today also.
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

Dr. Mercola's weekly newsletter mentions checking out
this web site for purchasing meds without
perscriptions.
www.drugquest.com
Dottie

To the group,
Can anybody tell me the correct dosage to take of Oregano Oil?
Regards
Mark Siebert

Hi everyone _ I am a brand-new member who began having RA symptoms in mid-June
and started Minocin the end of July. One of my most troubling symptoms is severe
nausea. I even vomit occasionally. I also suffer from heartburn and acid reflux.
My rheumatologist does not think RA includes stomach symptoms. Any feedback
would be much appreciated. _ Rhonda

Hi,
I read an email yesterday from someone who spoke of being in a flare for months.
That caused me to question my understanding of a 'flare'. 'Flares' are spoken
of commonly in this group but are we all talking about the same thing? I have
never had a flare which has lasted more than a couple of days but that depends
upon my definition of a flare, maybe the last 6 months of my life has been a
flare of varying proportions. Since 30th June I have been keeping a daily diary
in an effort to try and establish a patterns / trends / associations. One of
the things I do each day is give myself a pain rating on a scale of 0 to 15
where 0 is normal and 15 is disabled. I have graphed that and the peaks show
the 'flares and the mini flares, as I understand / define flares. I would be
interested to know how patterns of flares and the progressive trend of what I
have compares with other RA sufferers.
Graph attached here pasted into an MS Word 97 doc and an MS Works 4 doc
Best wishes
Mike
Botswana

Hi Susan,
Anytime the dose is varied, either up or down, you're likely to get a herx
reaction. So yes, I'd say it was because you increased the dose.
Chris.
My wrists were doing great so I've even been lifting light weights. Now I
have a sore left wrist (tendon, I think) and I'm wondering if it could be
that I just increased my dose from 150 a day to 200. I'd like to think it's
that anyway; I know the weights did not hurt at the time. Anyone else get
worse with dose increase?

My wrists were doing great so I've even been lifting light weights. Now I
have a sore left wrist (tendon, I think) and I'm wondering if it could be
that I just increased my dose from 150 a day to 200. I'd like to think it's
that anyway; I know the weights did not hurt at the time. Anyone else get
worse with dose increase?
Also, I really don't know what to do about exercise. I'm seeing the doctor
tomorrow and will ask him. Even when there's no pain, or just a tad, I'm so
afraid that my bones are being ground down to dust or broken in some way. If
I get any good exercise tips (unlikely; he's great but not a jock!) I'll send
them your way. I am going to beg to see a physical therapist as I only have
3 months left of my great insurance and then I'm going to have to buy a less
fancy plan as my rates keep going up cause they say"we have had increased
costs and our analysis says they're due to increased use of medical services
and prescriptions! HELLO! (LOL) what else would we be using insurance for?
Clothes? Trips. Sigh... Sorry for the rant, but would like to hear from
anyone with increase in symptoms after dose increase.
SUsan

I have an olive leaf question. The pharmacists at two big herbal/supplement
pharmacies here thought I should only be on olive leaf when I had an active
vaginal yeast problem. They are not familiar with long-term antibiotic
treatment, and like many alternative practioners, are wary of it. I told
them that I thought I should always take some, at least half the acute phase
dose, as a preventative. They left it up to me. I don't want to take it
daily if that will undermine it's efficacy when I do have an active problem.
What's everyone else doing re: olive leaf?
Thanks in advance for the help.
Susan

http://www.cnn.com/US/9909/27/working.disabled/
--
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

I am currently on Minocin 100mg 2 times a day.
I have been on this dosage for 2 weeks and seem to be feeling somewhat
better in some areas, but now my feet are burning on the top. I need to keep
ice packs on them as much as possible.
My doctor told me today over the phone that my RA and Lupus tests were still
negative but with my symptoms, he believes that I do have beginning stages of
RA. My x rays seem to confirm that I have RA changes.
Anyone else on Minocin have these problems with burning feet and hands
stinging?
caversa@...

ok,i saw my stomach dr today & he wants to run a scope down my throat, yuck, i
had it back in 1991 & it was awful,anyhow he wants to see if the burning is an
ulcer, although there's several things it could be, some are worse & some are
minor,but i'm really nervous. oh wish me luck lol i feel like i'm gonna need it
this time. Linda PS i hope things are great with everyone else.

Hello Everyone!
Yoly so glad to here your doing so well!!...I took my mom to the Dr. on Friday
she has been doing so well for the last few days that we're almost certain that
the ap is working already! Could that be?? She was taking the antibiotics
every day for a while and started what we think was a herx...it lasted for three
days then I said for her to try it every other day and with in a couple of days
she started to improve. She was even able to twist her fore arms which she
hasn't been able to do for months and months! She still seems to be
improving...we're not getting our hopes up yet we know this is going to be a
long haul. I tried to get the Dr. to give her Mino with the Zitro,but he
wouldn't at this time...so she is on the Zitho mwf. She wanted to ask you guys
if any of you have a problem with night sweats...she will wake up just
drenched...this was happening before the AP too. Thanks to everyone for your
continuing support!! Micki...note the new email(pryah@...)by
the way this is a free internet service
you just have to put up with a small
advertising bar.

I am sorry for duplicating the comments on plaquenil. I was reading from
earlier mssages to most recent. A good thing to change. p.k.

This link has some interesting information regarding vitamins and herbal
supplements along with homeopathic .
http://www.healthshop.com/healthfact/default.asp?category_id=180&healthfacts_id=\
93
Mark
http://members.tripod.com/~Mark_Holmes
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;MSM (2G/day)
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html
ICQ 18123139

The protocols for clindamycin are in question 2 of our FAQ at
www.rheumatic.org/faq.htm - and if you click on the 'links' button, whatever I
called it, at the bottom of the index page, you'll see a list which includes
into on clindamycin.
Chris.
Daniel Magee <bondan@...
To: rheumatic@onelist.com
cc: (bcc: Christine Adlard/AUST/CSC)
Subject: [rheumatic]
From: Daniel Magee <bondan@...
I'm Back Again Gang
I had forgot to ask if anyone has info or where I can find info on
clindamycin. How it can be taken, What side effects etc. and what meds or
diet to counter problems.
Thank you once again
Bonnie

Eat Your Vegetables -- They're Good For Your Bones!
Mom didn't know about this one: Eating your vegetables may fight the
bone-thinning disease osteoporosis. According to new study results, rats
that ate common herbs and vegetables, such as onion, parsley and salad
greens, had significantly less bone loss than rats not on the special diet.
A variety of salads, herbs and cooked vegetables that are common in the
human diet can alter bone metabolism. Investigators fed male rats 1 gram of
dry onion per day for 4 weeks. Compared with rats that did not receive
onion-spiked feeds, these rats had significant increases in bone mineral
content and density. Onion and a variety of other veggies also slowed down
bone resorption, the loss of minerals from the bones that characterizes
osteoporosis. A number of vegetables and vegetable mixtures produced
significant effects on the rate of bone loss, including 500 mg daily each of
onion and Italian parsley, for example, and 100 mg each of "a mixture of
lettuce, tomato, cucumber, arrugula, onion, garlic, wild garlic, common
parsley, Italian parsley, and dill.
Interestingly, soybeans and milk powder -- foods thought to help slow the
process of osteoporosis -- had no effect on the rats' rate of bone
resorption.
COMMENT: Another encouragement to eat ones vegetables. It is good to know
that it is one of the more powerful interventions to improve bone density.
Nature September 23, 1999;401:343-344.

I should mention that the letter I suggested writing to your congressperson is
supported by the following group whose web site is located at :
http://www.aarda.org/index.html. There is a very informative link at this site
to an article in the Newsletter that this assocation produces -
http://www.aarda.org/common_thread_art.html
And another informative link from this newsletter particularly for women :
http://www.aarda.org/women_health_art.html
Mark

hi gee this is marie iam still trying to get off one list i type
www.onelist.comhit goam i doing it wrong or in wrong place thanks marie

Want to get involved? Here's your chance - help endorse this bill to establish
an office of Autoimmune Diseases at the NIH. Explanation and sample letters you
can send to your congressperson or senator are included.
http://www.aarda.org/adv_issue_8_waxman.html
Mark
http://members.tripod.com/~Mark_Holmes
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;MSM (2G/day)
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html
ICQ 18123139

Here's a link to some basic info on autoimmunity - serves as a good refresher
sometimes.
http://www.aarda.org/questions_and_answers.html
Mark

Hello Gang,
I am feeling lots better today. . I have my parents and brother here
watching over me , since my husband travels a lot, he is a airplane
pilot.
I am very pleased with my progress. Here are a few numbers just to
give you an idea of my improvement.
before and after surgery
My hip was fused for two years in a bent position about 15 degrees
at the hip and I walked on my toes, could not put my foot flat on the
floor.This has caused my sever back and knee pain.
I now can put my foot flat and my leg is straight down from my hip.
My hip was fused in a inward position so I had NO lateral range of
motion(could not open my leg)Before I had surgery I was measured at 5
degrees negative so I was bent inward.
I now can move my leg laterally (out) 25 degrees WOW!!!! The
therapist says that my tendons and muscles are so tight that it will
take a little while but I should achieve 45 degrees on a lateral
movement.
Laying flat on my back I could not bend my knee up keeping my foot
flat on the bed doing a exercise they call a "Foot slide" I can now bend
my knee and hip up to 80 degrees WOW!!!! I will achieve 90 but it is to
soon to push that far, I must let the buttock muscle heal.
Standing up I could not lift my knee up in a bent position . I can now
lift my knee up 60 degrees
Another great thing is that I can just sit when I want to, I would
sit slanted back and my hip would slowly bend over a course of about 5
to 10 min. this was really hard on my already fused back and neck.
So as you see, it was for me a very necessary surgery. No more pain
and the ability to move and become independent are a priceless gift.
All this in only 11 days!!!!
Take care lots of hugs, Yoly!!!!

My 8 year old has been diagnosed with Systemic Onset JRA. Her Dr. says that
the antibiotic therapy is "inappropriate" and would not work anyway since
there is not "infectious agent" at work. Has anyone heard of using the
antibiotic therapy, or a modified version, for children?
Hescock@...

I have recently found a rheum. who believes in Minocin. This after going to two
other rheums who gave me nothing but traditional meds most of which I was
allergic to.
I am taking 100 mg of Minocin twice a day. The only thing that is bad is that
my vision tends to get blurry after taking the pills. I am to stay on this med.
for 6 weeks before going back to doctor. \
I have been feeling somewhat better, (on trip to Colo.), but when I returned to
East Texas last night I began having a flareup. Today my hands, arms and
tingling and stiff....some slight swelling. My feet hurt. Could this be a
flareup or the Herx that everyone keeps talking about. I don't know what the
HERX is????
Please reply if anyone can help me.
Susan C.
caversa@...

Hi, Kelly
Thanks for the info. Mark Holmes wants folks on the list to write a brief
bio about themselves, to be posted at the shared files address at OneList:
http://www.onelist.com/files/rheumatic/Biographies/
The thought is to have a general reference available to refer to so we can
check out various members' diagnoses, prescription medications, herbal
remedies, etc.
I called two folks on the rheumatic.org web site before I got into the list,
and I am corresponding with a woman whom I found listed on Sarah's web site,
so I agree this could be a valuable resource. I just wouldn't want to put my
bio up in a place accessible to the general public and the search engines on
the web. I am perfectly happy to share my story with members of the list,
but I don't want my clients to read a frank discussion of how my problems
make it hard for me to do my work!
The reumatic.org site and Sarah's site are indexed by the search engines. I
applaud the folks who are so willing to share, but I feel the need to be a
bit more careful, to guard my ability to earn a living.
Jean (AP)Robert ( a little Welsh antibiotic humor)

I think Ethel needs an "honorary" degree in medicine.
She knows more than most GPs.
I guess necessity is the mother of all inventions.
:) :) :) :) :) :)
oxoxoxoxoxo
Donna
Ottawa, Canada
Scleroderma, Jan.95, AP Oct.97
(My Story)http:// www3.sympatico.ca/mousepotatoes
me eye gel.

CHAT WITH GOD
In a dream, I had a chat with God.
"Come in," God said,
"So, you would like to interview Me?"
"If you have the time," I said.
God smiled and said:
"My time is called eternity
and is enough to do everything;
What questions do you have in mind to ask me?"
"None that are new to you.
What surprises you most about mankind?"
God answered:
"That they get bored of being children,
are in a rush to grow up,
and then long to be children again.
That they lose their health to make money
and then lose their money to restore their health.
That by thinking anxiously about the future,
they forget the present, such that they live
neither for the present nor the future.
That they live as if they will never die,
and they die as if they had never lived..."
God's hands took mine and we were silent.
After a long period, I said,
"May I ask you another question?"
"As a Parent, what would you ask
your children to do?"
God replied with a smile:
"To learn that they cannot make anyone love them.
What is important is who they love.
To learn that it takes years to build trust,
and a few seconds to destroy it.
To learn that what is most valuable
is not what they have in their lives,
but who they have in their lives.
To learn that it is not good
to compare themselves to others.
There will be others better or worse than they are.
To learn that a rich person is
not one who has the most,
but is one who needs the least.
To learn that they should control their attitudes,
otherwise their attitudes will control them.
To learn that it only takes a few seconds
to open profound wounds in persons we love,
and that it takes many years to heal them.
To learn to forgive
by practicing forgiveness.
To learn that there are persons
that love them dearly, but simply
do not know how to show their feelings.
To learn that money can
buy everything but happiness.
To learn that while at times
They may be entitled to be upset,
that does not give them the right
to upset those around them.
To learn that great dreams
do not require great wings,
but a landing gear to achieve.
To learn that true friends are scarce,
he/she who has found one
has found a true treasure.
To learn that it is not always enough
that they be forgiven by others,
but that they forgive themselves.
To learn that they are
masters of what they keep to themselves
and slaves of what they say.
To learn that they shall reap what they plant;
if they plant gossip they will harvest intrigues,
if they plant love they will harvest happiness.
To learn that true happiness is
not to achieve their goals but to learn
who they are through striving towards them.
To learn that happiness is a decision.
They decide to be happy with what they are and have,
or die from envy and jealousy of what they lack.
To learn that two people can look at the same thing
and see something totally different.
To learn that those
who are honest with themselves
without considering the consequences
go far in life.
To learn that even though
they may think they have nothing to give,
when a friend cries with them,
they find the strength to appease the pain.
To learn that by trying to hold on to loved ones,
they very quickly push them away;
and by letting go of those they love,
they will be side by side forever.
To learn that they can never
do something extraordinary for Me to love them;
I simply do.
To learn that the shortest distance
they could be from Me is the distance of a prayer."

Hello all,
SInce being diagnosed with H.Pylori, Dr Franco has changed me from taking
Zithromax on Tue. and Sat. and has me taking Biaxin M-F along with my doxi.
I am not sure if it is has been changed due to the H.Pylori or because the
Biaxin has helped so much with the stiffness I had been experiencing.
Are any of you taking Biaxin and if so how are you doing on ? Thanks a
million!
Leslie

Actually, I have dry eye syndrome, but not Sjogrens. My eye doc says you can
have insufficient oils and lubricating components to your tears, but still
make the salt-water part just fine--they come from different glands, I
believe. So, if your eyes are irritated because they are not sufficiently
lubricated, they can make too much watery tears in an effort to compensate.
Since you are missing oils in the tears, it doesn't really do the job.
Ophthalmic ointment at night and artificial tears during the day should help
sooth your eyes. It is probably best to get artificial tears in individual
dose dispensers. These don't have a preservative, which can be irritataing.
Jean

Is the dosage the same for doxycycline as for minocin? My doctor
prescribed me for 100mg daily. I looked at Dr. Mercola's protocol just now,
and it seems to say it is given the same as minocin, but does not come right
out and say what the doxy dosage usually is so I wanted to double-check. I
have been on the doxy for about two months now (switched from tetracycline)
and my RA seems to be getting steadily worse since this time, so I am
looking hard at my treatment right now. I am confident that this is a flare
and not a herx, as it started about four months ago, which was the reason I
asked my doctor to switch antibiotics.
I have given up on some of my supplements as I just could not afford to go
on with them all, but am still taking the following: salmon oil, brewer's
yeast, cod liver oil, Calcium, VitC and VitE, acidopholous, and sometimes
ginger on days when it is worse. I do not take all of them as religiously
as I should, perhaps, because I have been feeling pretty discouraged and
depressed since this last flare started. I am also on 7mg prednisone right
now, and estrogen & progesterone HRT. I will be trying Relafen soon to see
if this anti-inflamatory will work for me in hopes of getting off the
prednisone or cutting way back on it. I do not like the thought of being on
it, but it has helped keep the swelling in my hand down enough for me to
function, and it has relieved the dehydration, dizziness and weakness I have
had a lot of trouble with in the past. I am looking into the low dose
cortisone protocols that were mentioned here awhile back.
Pain is still not a big issue for me, though when I take an occasional
tyl/codeine once a month or so, I see I have more pain than I thought I did.
I do feel more pain is there than I had a few months ago, and feel the
fatigue creeping back in, and the sleep problems I had so much relief from
initially, and also the morning stiffness returning. Stress is undoubtedly a
factor too, as with my worsening physical condition, my financial condition
and my ability to deal with everyday responsibilities worsens too. My
biggest concern is my joints. While I have less joints involved than before,
some are quite inflamed, and my hips are acting up again which they have not
for several years, also my neck problems are returning. Just as an example,
one of my mcp joints which is normally about marble-size went up to about
golf-ball size four months ago, and is now about walnut-size with the pred,
but not coming down any further. All the tendons and surrounding tissues are
inflamed as well. Same with one of my toes, and others are starting to flare
again. Tendons around knees and heels swelling too. I also am feeling
soreness and swelling in the glands under my jaw again, which has been a
chronic problem for me, and which was never fully explained to my
satisfaction, but which did get better on the tetracycline. Do you think it
might be signs on an infection that the pred is masking?
I feel like I spend so much of my day swallowing pills, just to feel worse
each day than the day before. I follow the diet for the most part, but
still eat whole wheat bread once in awhile, and take milk products because
of osteoporosis concerns. I did stop all dairy and wheat once before in the
past to see if it made any difference. The only difference I noticed was
that I started getting muscle cramps a lot when I didn't use dairy. So I
started using milk again. I eat sweets, like ice cream, but very little,
only about once a week or so. Other than that, tons of vegetables and water,
fish about four times a week, and meat about twice a month or so. My
mainstay is salads in the summer, soups or veg's stir-fried in the winter
with brown rice, and lots of salmon. This has been my diet for many years.
Overall, I see some real improvements since I started the AP, but I feel I
have taken two steps back out of the three forward since I first noticed
improvement with the tetracycline. I really don't think my doctor will go
for the clindy iv's, I have not actually begged him yet, but got a pretty
sceptical reaction when I asked about it before. I don't think medi-cal
would cover them anyway, but am not sure. Has anyone here ever had them
covered by medi-cal/medicare?
Sorry this is so long ( I warned you! <g
brainstorming help here and encouragement. I am mindful of Dr. Brown's
observation that September is one of the bad months for us RA'ers usually,
and perhaps this explains some why I have gotten dramatically worse the last
week or so, but this all started a few months ago. Thanks in advance for
any tips or encouragement you can offer. Liz G

Dear Group,
It is hot today here in Maryland and because of this
and the symptoms I am experiencing, I found a need to
write and find out if others have the same problem. I
have no DX but got sick in May of 1996, and have been
on Minocycline (generic) since May of 1997. The only
definitive thing I had was an ANA of 1:2580 and now it
is negative. My sed rate is around 10. I had
symptoms of dry eyes, headaches, numbness and tingling
in legs below knees, joint pain, muscle pain and
fatigue. All those symptoms have virtually
disappeared except for this sensory feelings in my
legs. The feelings are there only in the summer
months and when it gets hot here in spring and fall.
I cannot pinpoint whether it is heat, humidity,
barometric pressure, or what. Whatever it is, it
scares me because I have been feeling well otherwise
for over a year now. I was tested for MS by two
different neurologists and had two MRI's of the brain
done (no demyelination.) It is not numb, but rather a
feeling of slight burning or tingling, or like I had
two inches of leg hair (which I do not have)standing
on end. I have written this same kind of plea last
year with no one having an answer or suggestion, so I
thought I would write again and hope someone can help.
Thanks in advance.
Karen
No diagnosis , 3 years; minocycline 100mg 3x wk for 2
years

hi can you take me ofonelist, gee i cant keep up with the mail,gee ill miss
ya all are there any to go on for scleroderma , well i do thank ou all so
much i do hope i can come on latter thank yor all so sweet marie

You can also go to onelist and stop your mail without unsubscribing and
then go to the onelist site and read the archives when you want to. This
way you get no mail in your mailbox.
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

Try the supportlinks page below for links to all sorts of stuff we are
interested in. There is a search function to search the site also.
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

The onelist shared files are only accessable to the group members. The
bios on the rheumatic website are submitted to search engines and picked
up by robots.
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

Please note my new email address:
Ethel
emsnooks@...

Contact: Jennifer O'Brien
jobrien@...
415-476-2557
University of California, San Francisco
UCSF finding could lead to a new class of pain relieving drugs
UC San Francisco researchers have identified a new molecular pathway
through which chemical signals alert the body to pain, and inhibiting
the key protein in this pathway could bring relief in a broad spectrum
of pain syndromes, they say.
The finding, drawn from a study in mice and rats, applies to
inflammatory pain associated with such conditions as arthritis and
colitis, torn ligaments and sprained ankles, and post-operative pain.
However, the researchers expect the finding will apply even more
broadly.
"This discovery is extremely important," said the director of the
National Institutes of Health Pain Center at UCSF, Jon Levine, PhD, a
professor of oral and maxillofacial surgery and medicine and a senior
author of the paper. "I think this signaling pathway will be shown to
play a role in many kinds of pain."
The study, published in the Sept. 24 issue of Neuron, was funded by the
Ernest Gallo Clinical and Research Center at UCSF and the National
Institutes of Health.
The body's immune system responds to many forms of tissue injury by
producing an inflammatory response, which includes the release of
chemical signals into injured tissue, where they sensitize pain-sensing
neurons. As a result, stimuli that normally would not cause pain, such
as the brush of a shirt being drawn onto the body, become painful when
the skin is sunburned; likewise, the movement of a joint, normally
unnoticed, would cause pain in the presence of arthritis.
Chemical signals act on pain-sensing neurons by latching on to specific
cell-surface receptors that convey the signals into the cell. Once
inside, the chemical signal initiates a cascade of molecular events that
culminates with the neurons transmitting pain signals out of the cell
body and into the central nervous system, where pain is felt.
Current inflammatory-pain drugs -- the nonsteroidal anti-inflammatory
drugs, or NSAIDS, including the new COX-2 inhibitors -- act by blocking
the production of some of these chemical signals, or inflammatory
"mediators." However, because these drugs block only a small percentage
of these messages, their effectiveness is limited.
The significance of the UCSF finding is that the researchers have
identified a protein enzyme inside pain-sensing neurons through which
they believe many of these inflammatory mediators - including those
targeted by NSAIDS - act, suggesting a possible target for broad-based
pain therapy.
"Identifying the common signaling pathways inside these pain-sensing
cells would prevent us from having to identify blocks for every
inflammatory mediator," said Levine. "I think this enzyme will prove to
be the central signaling pathway by which most chemical mediators act on
pain-sensing neurons."
For more than a decade, researchers have thought that the protein kinase
C (PKC) enzyme played a role in the pain-sensing neurons' activity, but
they have not known which of the ten known forms of the enzyme might be
involved. In the current study, the researchers discovered the role
played by protein kinase C epsilon (PKC).
The researchers discovered the PKC signaling pathway by conducting
studies in mice that lacked the enzyme and in rats in which the enzyme
was inhibited by a drug.
In one study, they compared the responses of normal mice, and mice
lacking the PKC enzyme, to painful stimuli, and determined that the mice
responded equally to stimulation.
However, when they added epinephrine, an inflammatory mediator that
heightens the sensitivity of pain sensing neurons, those without the
enzyme exhibited a "significantly reduced" reaction to stimulation.
In a second study, the researchers applied the chemical irritant acetic
acid. The response to the painful stimulus, which causes inflammation,
was "almost completely blocked" in the mice lacking PKC, they said. In a
third study, the researchers examined rats in which PKC was inhibited.
Predictably, both these animals and control animals responded to
stimulation. However, when epinephrine was added to increase pain
sensitivity, the animals with the inhibited enzyme became markedly less
sensitive to the pain.
Epinephrine acts on pain-sensing neurons, or nociceptors, by enhancing
an ion channel known as TTX- RINA, which sensitizes the pain-sensing
neurons to previously innocuous stimuli. As a check on the animal study
results, the researchers examined whether inhibiting PKC would blunt
epinephrine's action in pain-sensory neurons in laboratory cultures. It
did. In cultured cells in which the enzyme was inhibited, epinephrine's
effect was decreased by half, demonstrating that epinephrine depends on
PKC to prompt a full effect on the TTX-RI NA channel in a critical group
of pain-sensing neurons, the researchers said.
The researchers further demonstrated PKC's role by examining the
response of rats to a potent irritant known as carrageenan. When they
applied the seaweed compound in rats exposed to stimulation, the animals
exhibited pain. But when the animals were pretreated with the chemical
that inhibits the PKC enzyme, the painful response was "almost
completely reversed," the researchers report. Carrageenan is commonly
used by the pharmaceutical industry as a model to screen for
pain-reducing drugs.
Finally, the researchers showed that PKC modulates the pain response
induced by the chemical known as nerve growth factor. When the factor
was injected into normal rats exposed to stimulation, the animals
experienced heightened pain. But when the factor was injected in animals
in which PKC was inhibited, their pain threshold was higher.
"These results suggest that PKC plays a key role in regulating pain
sensitivity," said a senior author of the UCSF paper, Robert Messing,
MD, an associate professor of neurology. "The fact that inhibiting PKC
reduced pain in response to several different sensitizing agents is
significant."
Since absence or inhibition of PKC does not disturb basic pain-sensory
thresholds, needed to help alert the body to possible danger, and the
mice in which the enzyme was missing appeared normal, it may be
possible, the researcher said, to develop PKC inhibitors that reduce
pathologic pain without producing serious systemic side effects or
interfering with normal pain responses.
Co-authors of the UCSF study were Sachia G. Khasar, PhD, an assistant
research pharmacologist, K.O. Aley, PhD, an assistant research
pharmacologist, William Isenberg, MD, PhD, an assistant reseach
endocrinologist, Gordon McCarter, PhD, a post-doctoral fellow, Paul G.
Green, PhD, an assistant professor, all in the Department of Internal
Medicine and Oral Surgery and NIH/UCSF Pain Center; and Yu-Huei Lin,
PhD, at the time a postdoctoral fellow, Annick Martin, PhD, a
post-graduate research fellow, Jahan Dadgar, BS, a staff research
associate, Thomas McMahon, BS, a staff research associate, Dan Wang, MS,
BS, a a staff research associate, Bhupinder Hundle, PhD, at the time a
postdoctoral fellow, and Clyde Hodge, PhD, an assistant adjunct
professor in the Department of Neurology, Ernest Gallo Clinical and
Research Center at UCSF.

Need some help. I was trying to read the stories on the onelist and I could
not remember my password so I created a new one. I don't know whether to get
daily digest or individual. Please explain.
Carol*

Some of you may be aware of this, but if not, you might want to take a look
at this link. (http://www.centerwatch.com/search.htm) . If you type in
rheumatoid arthritis, you will find an entire list of clinical trials
offered, some of which may be near you. These can be one way of having your
situation monitored extensively at no cost to you, although some may involve
taking drugs.
Mark
http://members.tripod.com/~Mark_Holmes
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;MSM (2G/day)
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html
ICQ 18123139

I just got results back from blood work at my RA factor was 1850- (the last
several months it was up to 800)
Has anyone's RA Factor gone up this high?
Thanks- Carol*

I'm Back Again Gang
I had forgot to ask if anyone has info or where I can find info on
clindamycin. How it can be taken, What side effects etc. and what meds or
diet to counter problems.
Thank you once again
Bonnie

In case anyone is interested. Here's the protocol that
I'm following:
7 days of Allopurinol (3X daily) then stop taking
totally
2 days per week of Metronidozole (3X daily) for 6
weeks.
I take 10mgs. pred/daily and 3 Aleve in the am and 3
in the pm
In addition I am still on AP (200 mgs. daily) and I
take acidolphilus, msm, calcium and
glusosamine/chrondroitin

Hi Gang
I am wondering if any one has information on studies done on AP or where I
can find them.
My rhumy wants me to go on mega drugs but I'm still fighting her on this
one. She feels and is true that my joints are worse. I am taking celebrex
400mgs a day and feel that the inflamation has decreased and the only time
I am in pain is when I am putting presser on my joints. My hand are the
worst and I find the scariest. Taking celebrex was a major decision for me
but I realised that with the inflamation it is harder for the AP to work.
Off topic, has anyone heard from Chris I tried to e-mail her but it
wouldn't go through (cadlard @csc.com)
Thanks Bonnie

Hi group!
Thought I would let you know that I am trying the
allopurinol/metronidozale treatment that Joe Graff has
periodically been writing about. As you recall, Joe
says his RA symptoms improved 90% although the
treament made him very sick. He says he's still doing
well but has decided to go through another round of
treatment, this time using Clotrimozale to see if he
can get back to 100%. I have been on the 6 week regime
for just over one week now. I too became very very
sick but my side effects were different than Joe's. I
started the protocol on a thursday. I didn't have any
real problems over the weekend other than some mild
indigestion type symptoms. I was actually kind of
bummed because I wanted a bad reaction. The promoters
of this treatment say if you don't have a reaction it
probably isn't going to work. Well by Monday I was
eating my words! I was soooooo sick!!! I had a flare
type reaction that was so painful it took my breath
away with every step! I figure on a "normal" day my
pain and mobility level is about a 4-5 on a scale of
one to ten (one being fully functional with no pain).
By Monday I was a raging 9-10. When my pain brings me
to uncontrollable crying spells, I know its bad. So
that lasted Monday and Tuesday. Wednesday and Thursday
I was operating at a 8-9 level. By this morning I am
down to a 7-8 and back at work feeling so relieved to
be out of the woods for the moment. I do not know if I
am getting better. It's too soon to tell but I know
that something is happening. I am now on day two of my
second dose. I hope that in a couple of weeks I can
report that I am significantly improved like Joe. But
I'm not holding my breath. I think this treatment
follows the kind of thing that chemo patients deal
with. IE: take the medicine, feel pretty good for a
couple of days, feel horrible for a couple of days,
then feel marginal for a couple of days. One reason
why I am not have been so ill with stomach upset like
Joe is that I take 10mgs of Prednisone a day. Joe
doesn't do Pred. This therapy suggests that 1 cc of
Depo Medrol be administered to the patient before the
first dose to help minimize the flu-like symptoms.
Maybe my 10 mgs. of Prednisone are helping keep those
symptoms at bay. The downside is that it is suggested
that patients be Pred free before trying treatment but
I'm so dependant on it, I'm not capable of giving it
up just yet. I've been on 10mgs/daily for two years.
Other than my Pred dose, Joe and I have fairly similar
RA histories except his primary involvement has been
hands, mine has been wrists, knees and feet. I offer
this information as a measure for this "informal
study". Is there anyone else trying this treament???
It might be interesting to compile some results. If
you are or have tried it, I would appeciate knowing
more about your experience. Please e-mail me
canews@....
I'll keep you posted.
Regards,
Amy Miller

There are 3 more stories posted at
http://www.onelist.com/files/rheumatic/Biographies/ . Thanks to all who
participate!
Mark

Geoff,
I appreciate your kind remarks, but, respectfully, I must assume you have
never worked on a national ad campaign under deadline. I know what my work
is worth. Due to major upheavals in the graphic design and visual
communications industries brought about by the advances in desktop
computing, the illustration field is now truly dog-eat-dog.
A large percentage of my former illustrator colleagues no longer make a
living this way. I have been lucky in that I am a natural at computer work,
and already had 10 years of solid traditional experience under my belt
before so much of the displacement began to occur. But I have had to make
major shifts in the way I work, while the industry is going through all
sorts of changes, while I was learning to live with a chronic painful
disease. All this while self-employed, paying for my own health insurance
(now costs 8 times what it did when I came down with ReA 11 years ago), and
buying my own computer equipment and paying for my own retraining.
Much as I wish I could say "I'm a talented experienced artist with a chronic
disease which may or may not impact my ability to complete your project in a
timely way, so take me or leave me" I fear all too often, they would choose
to leave me. Of course I don't work for clients whose standards are not up
to mine (e.g. tobacco companies) but that is another story.
I have several friends who are also clients, and they do know of my physical
challenges when they assign me a job, but this information is limited to a
trusted few who truly do know me well enough to trust that come hell or high
water or medial epicondylitis, I will find a way to complete their job on
time.
So, this is why I don't promote myself as an arthritic artist. That's just
one more competitive disadvantage I don't need.
I would welcome any other comments on my situation. If anyone is interested,
you can see my work at http://home.postnet.com/~jpro. The site is not
finished, but is mostly there.
Jean

Dear group,
A friend of mine suffers from Osteo-arthritis. She also has to tolerate
insulin for diabetes every day.
My question is, can she take Glucosamine/Chondroitin, without drug
complications?
Any input greatly appreciated!
Hugs,
Janine Osberg RA-16 years AP-2 years and 7 months
Loving Life once again!

thank-you for letting me try but I just can not keep up with all the
e-mail . please remove me from the list thanks
PATTY[PAT]

Please remove me from you loop. Bless all of you in your search for
wellness. The time I have spend reading your information has been
invaluable, but I simply do not have the time and energy to keep up with
the volumn. Thank you for letting me sit in.
Louise Harper
louiseharper@...

I am scheduled to have a synovectomy on my knee in 3 weeks. I wanted to get as
much info as I could. Please email me all you know.
Thanks

Dear Group,
Joey Sala & Liz G have asked about licorice & ginseng in RA SPES. Since this
seems to come up from time-to-time (last aired on 08/26/98) it seemed a good
idea to compile a compendium of sorts. There was an extended and extensive
discussion on the amount of and type of licorice in RAS when we first started
looking into it as a group in July 1998, and ginseng, and everything else in it
ad infinitum from both the perspectives of potential problems to the ability to
"home cook" your own.
I have patched together some excerpts at the end of which is quantity
information on the licorice. RAS works vis a vis the synergy of the ingredients
and the bodys own natural chemistry. As a group and via our various inquiries to
a broad variety of health car professionals we have pretty well established a
general opinion that none of the ingredients alone could do what RAS does, nor
does anyone have a good feel for the exact ratios of the ingredients nor their
pre-package handling, etc. RAS was subjected to gas chromatograph study last
year and found NOT to contain anything other than the listed ingredients. RA
SPES (RAS) should not be confused with PC SPES which is a different compound
from the same manufacturer that is used for Prostate Cancer.
This is written in plain text with a fixed space font. If you cannot make out
the tables, copy & paste into notepad or some similar text editor.
I think you'll find the information worth the read.
HTH.
[EXCERPTS]
RA-SPES Basic Study and Clinical Trial for Rheumatoid Arthritis
Robert F. Tzeng, M.D.
Page 23, [Table II-2. Safe Dosage and Side Effect]
CASE / DOSAGE / WEIGHT / BP (other data omitted here)
( - indicates no change)
(before -
CASE / DOSE / WEIGHT / BLOOD PRESSURE
1 / 2-3 qd / - / 178/82 -
2 / 2 qd / - / -
3 / 2 bid / - / -
4 / 3 bid / 219 -
5 / 2 bid / - / 140/90 -
6 / 2-3 bid / - / -
7 / 2 tid / - / -
8 / 2 bid / 118 -
9 / 2 bid / - / -
10 / 2 bid / - / -
"Note 8. Dosage and potential side effect
Two patients gained weight.
Two patients became appetitive.
One patient increased neutrophils/lymphocytes rate.
One patient increased triglycerides.
One patient increased GOP and GPT.
Four hypertensive cases, blood pressure was gotten down.
Two hyperlipemia cases, triglycerides level was decreased."

To get a flu shot or not to get a flu shot - that is the question!!!
janet in tulsa

You know as I read all these comments of how everyone deals with their
disease, I still think it would be helpful to understand the background of
one's disease and what they've done, how many joints they've had replaced,
their experiences with docs, etc,etc. The suggestion below is not to follow
what conventional docs suggest (and I'm not singling out Paula in this
regard, but her note made me think about this again). Well, if I was a
newbie I might think that was the right thing to do, but not necessarily
know why that person feels that way. It may not be the right choice for
someone with an aggressive case of the disease. So once again, I appeal to
those of you out there to offer up your stories so we can understand better
why you make the choices you do.
4 stories are available at
http://www.onelist.com/files/rheumatic/Biographies/
Surely out of some 300 participants here, a few more could take 10 minutes
to write up a short personal/medical history? I've even offered to post
them if you would just email me the story.
Mark
http://members.tripod.com/~Mark_Holmes
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);MSM (2G/day)
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html
ICQ 18123139

Hi Paula......... you said:
".............I have a pretty high pain threshold so my tough it out
approach isn't for everyone but I find I can handle it as long as I just
rest and really be kind to whatever area is flaring."
It's good to hear that someone else is taking the "tough it out" route. Do you
get a lot of flack from family and friends?
Be well, Joey

Hi Group,
HOW TO BEAT ARTHRITIS WITH IMMUNE POWER BOOSTERS
by Carlson Wade pgs. 203-204
" Exercise and Immune Power
Daily exercises may well be the strongest medicine you
need to ease the symptoms of arthritis. Exercise not only
strengthens your bones, muscles, heart and lungs, but also
increases the potency of your immune system. It makes every
body cell function better-in particular, the white blood cells
which are needed in the fight against arthritis.
Endorphins, Pain Control, Arthritis Healing
During activity your body releases endorphins, those magi-
cal substances emitted from the brain. These endorphins cir-
culate throughout your body to soothe pain and bring about a
healing of arthritis. During physical activity, a higher demand
for oxygen causes blood vessels to expand throughout the body
in order to deliver more oxygenated blood. Benefit: This increase
in blood flow is beneficial because the cells of the immune
system must also travel in the blood stream. As the delivery of
these arthritis-soothing agents improves, so does their healing
reaction."
Glenda
RA 2 3/4 yrs, AP 3 mo. Minocin100 mg 2Xday
Hypothyroid 7 yrs, Levothyroxine 150 mcg/day
Osteoporosis 9 mo, Fosamax 10 mg/day, Prempro .625 mg/2.5 mg/day

Hi Group,
For those of you looking for an anti-inflammatory alternative to
cortisone.
Now how do I lasso a wild oyster? ;-)

Hello everyone!
Well my mom is doing a little bit better today...shes pretty convinced she was
having a herx...she had a few really bad days. She asked me how long they
usually last and I told her it was different for everyone. She has a very good
attitude about it though and that's in no small part because of all of you. We
feel we know what to expect. She wanted me to ask you guys what you all do for
pain relief she is basically taking a bunch of tylenol and that's it. Right now
her head is what causes her the most pain...and she was never one to get
headaches. Maybe someone knows of some natural way she can get some relief...on
another note...she sees her Dr. tomorrow..I'll write and let you know how she
does.
Thanks to everyone in advance
Micki

gee i was so so sick but better, oh yes thanks my com just got bk on i miss
it up thank god for childrens, my son drives 30 mile just to get me bk on
track, leggs weak, dont know what i had ear side of nexk chest wow glad it
almost over hope its not my sceroderma ra, oh hope not, well how is all my
scleroderma friends out there gee write i do hope your all ok, gee i get
email never heard of those deases, well thanks for readinging i do hope to
hear from ya, oh yes i was told to have blood work on liver for being sick
hope it ok marie

I would think if Ginko could thin your blood it would be better to use
than the blood thinners that they give you after surgery. How the heck
many doctors would know what a certain herb did if you told them
anyway? Nsaids also thin your blood a lot. Mine was much thinner than
normal as the nurse who took my blood donation prior to surgery told me.
Never the less, in the hospital they continued to give me blood thinners
until I was so severly anemic I was shaking when trying to stand (with
aid of crutches or walker after hip surgery) Then when they gave me
blood transfusions they managed to also give me septicemia. The new hip
is just about like a normal one but what I went thru to get it was
terrifying!
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

I've been to a hospital and a new rheumy here in Copenhagen. I´ve been on AP
for 15 months now (with the help of my GP) and this new rheumy is willing to
continue the doxy and oral Clindy treatment. But since I´m not doing so well
and having joint destruction, she wants me to take either MTX or a medicine
for malaria, which is also used for RA. I don´t know the name for it, does
any of you take this and what are the results? Is it possible to get the
good results with the AP when on this stuff? I still hope to go on without
MTX or any other medicine, than low dose of pred, but it is getting harder
and harder.
Regards Sarah 31 yr
doxy 200mg MWF, clinda 1200mg weekly, pred 5mg daily
acido and lots of supplements, try to keep a diet

Hi group--My first mycoplasma test from Immunosciences Lab was negative.
Am waiting for the results from Garth Nicholson's Institute for
Molecular Medicine.
I have been on the anti-amoeba protocol now for 2 weeks. Decided to
start this as I was diagnosed about 4 years ago with several amoebas and
felt the herbs I took never took care of the problem. Plus I have major
gut stuff going on. So far I have been slightly more tired but other
changes so far.
The main content of this regards Lyme. I have had severe CFIDS and FMS
for many years. No diagnosis for RA. Many CFIDS people are testing
positively for Lyme. I have only been on the lymenet.org site so far but
freaked out when I read that no testing is considered reliable and the
treatment protocol makes the RA protocol look like a walk in the park.
My question for the group is: Who has been tested, treated, or
researched Lyme?
Thanks,
Hope

Hello, folks,
Relatively new member to the list, but have gained a great deal of info from
subscribing...could anyone tell me what RA-SPES is? Somehow I have missed this.
Thanks
Lynda in the Soo

The book shown above which I just mentioned is available through Amazon.com at
40% off. $14.97 vs. $24.95. Might be worth it at that price.
Mark

http://www.arthritis.org/resource/books/alternative_therapies.asp
Mark
http://members.tripod.com/~Mark_Holmes
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

http://www.pathfinder.com/drweil/qa_answer/0,3189,1626,00.html

metalloproteinases <enzyme
catalytic mechanism.
This group of enzymes is inactivated by metal chelators.
That sure clarified things, didn't it? Heck, you need a dictionary to explain
the medical dictionary!
This link may help to explain them better - gives you the shudders just to read
it!
http://www.thriveonline.com/health/Library/CAD/abstract8278.html
Mark

Hi all,
Not sure if this is related to the AP but I'm betting it is somehow
connected. My fillings in my teeth have recently turned a dark
blue-green...almost black. Weird huh?? I know the minocycline can turn our
teeth dark/gray (mine haven't)...but what about fillings. One of my new
fillings is still shiny silver, but my older ones are very dark. I've made an
appointment with my dentist...but I thought I'd see if anyone else has
experienced this. I've been on minocycline for almost 34 months....and
basically in remission I might add.
Cindi/Iowa RA 42 yrs AP 34 months.

I have checked into the onelist and I am suppose to be as it states, "a member
in
good standing." But i am not receiving any of the emails from the members of
the
rheumatic (antibiotic support group). I have been a member since around Feb. of
this year, don't know what is wrong. I went into the onelist and subscribed
again
but no emails as of yet, from any of you guys.
Any suggestions what I am not doing correctly concerning how to receive the
e-mails?
Thanks Martha Smith from St. Augustine, Fl.

Geoff and grp:
Has anyone had any elevation in Blood Pressure while using RA-SPES? I like
to check in with ya'll from time to time on this matter. I am flaring really
bad from the Clindy IV and am considering using it.
Also, has the RA-SPES fiven improvement to most everyone that takes it?
Thanks,
Carol*

I went to the dr today and got a prescription for armour thyroid I will
let you know how it works out. I was surprised it wasn't any more
expensive than the synthetic--the natural estrogen and progesterone are
expensive.
I have been on RASpec for two weeks now taking two pills aday. I have
gotten off Celebrex and the swelling in my hand hand is almost gone. I
have been checking my index finger using my wedding ring and today it
could go over the knuckle for the first time since this started. My
trigger finger seems better too. I do hope I'll be able to reduce the
RASpec to one aday because of the price, but it does work.
Julie

I was browsing alt.support.arthritis and noticed this and thought you might want
to see it. Response to it is from Dr. Susan Hoch who hangs out there.
Mark
"This month's issue of Arthritis and Rheumatism carries the four year followup
of Jame's O'Dell's study of minocycline in the treatment of early seropositive
rheumatoid arthritid. I think this is an important article and hope that all of
us can appreciate what this article says and what it doesn't say without the
usual flames from the usual suspects.
Dr O'Dell and associates reported on their followup of the 46 patients who they
originally treated either with minocycline 100 mg twice a day or placebo for 3
to 6 months. In the original study, if the patients did not have 50%
improvement at 3 months, they were withdrawn from the blinded part of the study.
The patients that remained in the blinded portion were then reevaluated after
another 3 months. At that time the blinded portion of the study was stopped and
the patient's physician was free to treat the patient as he or she wished. If
the patient had been on minocycline and had a good response (15 of 23 patients)
minocycline was restarted in most cases.
This open followup study then went on for the next 3 and 1/2 years. In this
paper, they report what happened to these patients. They went back and found 20
of the original minocycline patients and 18 of the original 23 placebo patients.
During the blinded period, no one receiving minocycline withdrew because of
toxicity. One placebo patient withdrew because of a GI bleed. In the open
phase, 3 of the minocycline patients discontinued minocycline because of
hyperpigmentation skin changes and
1 reported mild hyperpigmentation but continued the drug. In the three patients
who stopped, the pigmentation disappeared over time.
The mean years of followup for the minocycline patients (20 patients) was 3.8
years. It was 4 years for the 18 placebo patients.
For purposes of this study, minocycline was not considered a DMARD although as
you will see this study suggests it is. There was a significant difference in
the number of patients in remission in the minocycline for 6 months versus the
placebo group for 6 months. Only 1 of 18 placebo patients was in remission
without the usual DMARDs.
This gives a figure of about a 6% chance of a spontaneous remission for early
RA. That is interesting because we always use a 5% figure to tell patients what
their chance of a spontaneous remission in early disease is. In comparison, 8
of the 20 minocycline patients were in remission at the time of evaluation
without other DMARDs or steroids.
The converse was also true. Only 10 of 20 patients (50%) who received
minocycline required other DMARDs at 4 years as compared to 16 of 18 (89%)
placebo patients. With regard to prednisone use 9 of 20 minocycline patients
were on prednisone (45%) as compared to 11 of 18 placebo patients (65%). At the
end of the 3 and 1/2 year open label study, 11 of 20 minocycline patients
remained on minocycline and 4 of the placebo group were now on minocycline.
When they looked at the time course of response, while significant response had
occured by 3 months, maximal response did not occur until at least 9 months.
In their discussion, the authors point out that their results differ
dramatically from the MIRA and Netherland trials. One possible reason may be
that their disease duration was less than 5 months on the average whereas
Netherlands was a mean of 8.6 years and MIRA 13 years.
They also discuss that they have not data on the mechanism of action of
minocycline but speculate that it may inhibit metalloproteinases rather than
being antibacterial.
They also stated that because of the side effect of hyperpigmentation, they have
switched some of their patients to doxycycline (for which there is no data on
efficacy but it does cause less hyperpigmentation.
Now, what's the take home in my opinion.
This study certainly suggests that minocycline is a reasonable option for
patients with early rheumatoid arthritis. Unfortunately we do not have any
early data to directly compare it to other DMARDs but it is certainly preferable
to just giving a patient NSAIDs or Prednisone as some physicians appear still to
be doing. Certainly, at the least, in my opinion, a patient with early RA
should be offered an NSAID AND minocycline unless there is some contraindication
like pregnancy or allergy.
This study does not consider xray change over time.
No conclusion can be made as to the infectious cause of rheumatoid arthritis
from this study.
No statement can be made that minocycline cures RA from this study.
No comparison with other DMARDs or combinations can be made.
II should remind you that, despite minocycline, 45% of the patients still
required steroids and 50% required an additional DMARD.
These are no large numbers.
Nevertheless, I believe it is an important study and should alter how physicians
view early rheumatoid arthritis

Hello Gang,
I made it with flying colors. I know it was all the prayers that
pulled me through. I am still very sore and tired. I have a therapist
coming over tomorrow . Feels so good to not have that bone grinding pain
anymore. The muscle pain is very bad. They have done movements ,not done
in years. However the scare is quite disappointing, 12 in.long
YIKES!!! I guess my Victoria Secrets days are OVER!!!!
All in all I am very happy.I will try to get strong for the other
hip to get done in December of this year. I will write more as I get
stronger.
Love to you all, Yoly!!!!!!!!

Hi,
We talked a while back about magnesium supplements. The magnesium oxides
cause diarrhea, I remember. Chelated products were better. What about
magnesium citrate?
Thanks,
Ute

Hello all,
First of all my never ending battle with elevated ASO titre.Sept 98 it was
306 so started Ampicillin 250 mgm three times a week(as well as my Mino and
Clind).Slowly but surely decreasing to 251.Then in May it jumped 18 points to
269.Thought a year would go by with no progress so changed my strategy.In
case Mino and Amp were working against one another I did this on my own
accord-Week One I took Mino and Clind.Week two I took Amp and Clind.Week3
Mino-Wk4 Amp and so on.I feared my Rh Arth would come back with a vengeance
but that didn't happen (Been on AP for two years).And in Aug my ASO dropped
15 points to 254.(coincidence?).Since I was seeing my Rheum in Sept (who
doesn't know I am treating my ASO titre since she won't do it) and because I
was now beginning to feel a bit achier and thought my sed rate would be up
and she would wonder why,I momentarily stopped Amp.But she didn't check my
sed rate.So for the next three months I will try decreasing my Mino and
increasing my Amp and see what that does for me.If nothing else I will find
out which way works best for me!! Secondly for those of you who live in
Calgary or know someone who does we will be starting our Antibiotic Interest
Group Meetings again on Mon,Sept 27 at 7pm in Colonel Belcher Hospital
Auditorium.We urge EVERYONE to come out and phone your buddies -there is a
high possibility we may have a reluctant Rheum there and we need lots of good
stories.
Hugs,
Lin

My mom tried celebrex and it didn't do anything for her...it seemed to for a
couple of days then she just continued to get worse...she just had to have
surgery in both of her eyes to release the pressure, it was in the 40s and she
did have some damage,but the Dr. got to it in time...he said the veins in her
eyes were like ropes...we assumed it was the RA... do you think it had anything
to do with the celebrex??!!My mom also tried the vioxx it didn't seem to do
anything for her either...it just seems like nothing is working for her anymore,
but we have confidence the AP will.
Micki

Does anyone have Ethel S. e-mail address?
Thanks,
Sue :-)
--
Susan S Estridge
E-Mail : sestridg@madison
Internet: Sue_Estridge@...
Phone : (704) 649-2411
FAX: (704) 649-2020

About a month and a half ago I saw a book in a local bookstore which looked
intriguing...the Title was: Overcoming the Pain of Inflammatory Arthritis,
by Phyllis Eisenstein and Samuel M. Scheiner...the subtitle was The
Pain-Free Promise of Pantothenic Acid...
Since the title caught my attention I purchased it after thumbing through it
for a few minutes....I read portions of the book and decided to give
Pantothenic Acid a try....I have been taking it for about four weeks now...I
started with 1G per day and increased to 2G...My pain and stiffness have
decreased since taking it....Is it definitely attributable to the
Pantothenic Acid...can't really say for sure...maybe all my DMARDs are
working a bit better right now...but I believe it is surely worth a
try....My inflammation is down even though I have decreased my dosage of
Prednisone....
One thing I recall from the book was that the Pan.Acid somehow affects the
body's natural steroid producing abilities, increasing the body's
output...this, I would think is a very reasonable explanation of it's
ability to reduce inflammation.
With all the posts regarding Niacin these last few days I intend to increase
my niacin intake as well....I have to take it for my high cholesterol level
as well....
Speaking of cholesterol levels....I tried quite a few different methods to
lower it in the past...from diet (even a strict vegetarian diet for awhile)
to niacin and even drugs (such as zocor)...none of them worked very well for
me (my chol level stayed at about 300)....BUT about a year ago I started
taking chitosan as a means to assist my weight control efforts...chitosan is
made from ground up shellfish cartilage...it absorbs many many times its
weight in fat...it is suggested one takes a couple chitosan caps about 20
mins prior to eating...the good news is it not only assisted in my weight
control efforts BUT it lowered my chol by 30 to 40 points...another item
which actually lowered it a bit was Red Wine...though I know many would have
mixed feelings on that one...
Blessings and health to all.
Tony

somehow I have not been receiving rheumatic emails.
Thanks.
Martha Smith gmsmith@...

My mom has been taking msm for about 5 months now and still is with the
antibiotic therapy. She does seem to be a little better when she takes it but
she is so sick it's hard to tell... Shes been in a lot of pain the last couple
of days we think she may be herxing it's kind of scary because she is already so
sick. But we're trying to stay positive about it... I'm going to tell her about
the brewers yeast. You know its kinda funny she used to take brewers yeast in
the 70s, she was kind of a health nut, we used to tease her about it. Now we're
wondering if her healthy ways kept the RA at bay because she didn't get it until
she was in her 60's. But boy did she ever get it then its only been 5 yrs and
shes in a real bad way. I'm looking forward to the day she can write to you guys
herself!!:)I want you to know that every day I call her and tell her what I
found out from all of you. She really appreciates it and so do I!!
Thanks Micki

http://nccam.nih.gov/nccam/news-events/press-releases/091599.html
This is the arm of the NIH that might study all these weird things we take
someday. In this case they're going to study glucosamine for 4 years on OA
patients with knee problems. Maybe we should write and bug them to study all
this stuff we do? :)
Mark
http://members.tripod.com/~Mark_Holmes
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;ginko biloba;Slippery
Elm;Fish Oil(9 caps/day);acidopholus;Milk Thistle;MSM (2G/day)
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html
ICQ 18123139

Has anyone tried celebrex? i'd like to hear the good & bad if u have. Linda

I thought I should post this to the group since some of you are facing
surgeries in the near future and because I don't think this fact is well
known. Be sure to stop Gingko Biloba before surgery. They talked on the
news about a lady who had a minor biopsy and couldn't stop bleeding for 45
minutes after surgery. It turns out she hadn't mentioned taking Gingko
because she didn't think it mattered. Apparently it interferes with
clotting.
Linda

I found this recipe in the current Prevention magazine. It is listed with
good cancer foods, but it is also great for inflammation as an antioxidant.
We probably shouldn't each a lot at a time because even though there is no
added sugar, dried fruit does have a sugar content.
2 cups dried cranberries (we used 1 cup and added 1/2 cup dried cherries and
1/2 cup dried blueberries)
1 3/4 cup ground flaxseeds
1/2 cup frozen cherry juice concentrate (we used 1/2 cup of a cherry and
apple juice combination with no added sugar)
Heat the fruit and juice over medium heat for 5 minutes to soften the fruit.
The flaxseed can be ground in a coffee grinder (in this case, you will use a
little less than 1 3/4 cups of the seeds) or purchased preground. Put the
fruit mixture and flaxseed in a food processor and mix until a ball is
formed. Press into a 9x9 inch baking tin, cut into slices (they say 8, we
did 16 because it is powerful) and refrigerate.
Linda

Hi all,
Well I am a lurker and I know you have covered this with other people before but
as usual it didn't apply to me at the time so I didn't keep the information.
I am suffering with really swollen feet and ankles and was wondering if anyone
has the same problem or has any ideas on a solution.
I am currently and have for some time been taking the following:
1000mg Naprosyn once daily,
6mg prednisolone once daily,
25 mg Endep once daily,
1 heaped teaspoon of Joint food (glucosomine and chrondroiton supplement) twice
daily,
2 Olive leaf extract twice daily,
2 1200mg Deep sea Fish oil twice daily,
1 Multivitamin once daily,
1 losec daily (for ulcer)
i/v of 900 cc Lincocin fortnightly
150 mg of Minomycin MW& F
My doctor gave me some Lasix (fluid tablets) and I tried one a day and that
didn;'t do anything and now I am on two a day it is no longer swelling so much
that it is painful but it is still way over normal and only seems to be in the
feet and ankles.
Any suggestions are welcome and would be appreciated!
Julie ra Jan 97 ap May 98
Townsville Australia
jamulder@...
http://www.ultra.net.au/~jamulder/

Hello, Everyone,
I have been scheduled for knee replacement surgery on November 4th. I am so
excited. The latest injury to my knee was more than two years ago and the
pain has gotten worse and worse. Sometimes when I try to straighten it out
it hurts so badly that I cry out in pain. I was going to have my neighbor's
doctor do the surgery but he couldn't get me in until after the Christmas
Holiday. I dreaded going so long.
I have not taken the DMARDS, and am now off all NSAIDS. The only steroids
I've had were three injections into the knee this year and a few small pulse
doses more than six months ago. Now when the pain in my knee is intolerable
I take a vicodin.
When I had hip surgery seven years ago I took a lot of aspirin and
ibuprofin. I was lucky it didn't kill me because it caused bleeding. Back
then I didn't know how dangerous that was and thanks to G0d it always
stopped. Five years ago I had some stomach pain and thought to call an
advice nurse who told me to come to the hospital immediately. I was
hospitalized and was given two pints of blood. When the doctor stuck the
camera down and looked at my stomach I could see lots of old ulcers. I
hadn't realized how dangerous it was to have black, tarry stools. Now I
can't take any anti-inflammatory without also taking something like
Prilesec.
The day of my surgery will also be the one year anniversary of taking my
first dose of generic minocycline (Biocraft brand).
I believe my rheumatoid arthritis is not active because even with the pain
and stress of my knee problem all I have is a bit of stiffness in one little
finger--no pain.
I am going to ask the surgeon if I can get I.V. antibiotics while in the
hospital post surgery.
It has served me well to find all of you who have answered my questions and
held me up while I experienced the herxing. My knee is not wrecked from
rheumatoid arthritis and can only be resolved by replacement. I get scared
sometimes thinking about the surgery but I know that I have been delivered
from a far worse fate due to getting on the Antibiotic Protocol. If all
goes well with my surgery I'll be able to take walks without pain. Who
knows what good things lie ahead? Finding out about the antibiotic protocol
all the help and encouragement I have received from people on this support
list has given me a future that I do not fear.
Thanks to all of you,
Denise
RA 6/7/98 AP 11/4/98

David <rracing@...
Dear Sirs:
Over one year ago I suffered a condition of my left eye. It deteriated and
put me in great pain. I went to the emergency room at St Mary's Hospital in
Reno. They figured out that it was my left eye. They sent me to Dr, Wolf.
He sent me to Dr. Fiedlander. He sent me to Dr Handa at UC Davis. The
original diagnosis was possibly cancer. That was because I had two nodules
on my retina. Dr. Handa ruled this out while I had another epsiode with my
eye. Dr. Wolf had prescribed steroids which were very effective. I hated
them as it affected my sex life, my mood and my appetite. I was sent to a
dermatologist in Reno who prescribed Ibupropen and tetracyclene. These were
reasonably effective. However I could not get off the steroids. I then
discovered vitamin c had an effect on it. The combination of vitamin c
(6000 mg daily) and ibupropen and tetracyclene seems to hold it in check.
Today I saw Dr Schwab at UC Davis and he mentioned reiters Syndrome. He
says the vitamin c isn't helping. I have had the NSU and the diareah. Also
my b-27 test was positive. I am much worried about going blind in my left
eye. It is my dominant eye and I have already lost some of my sight in that
eye.
Thank you for your infromative site.
Thank You
Dave Fisher

Hi Group and Mark,
Yes that is correct, Mark. I just checked again to make sure-
a total of 2000 mg DURING FLARES.
Now if I could only find a cheap natural supplement/food
THAT WORKS to take care of the inflammation. :-)
PLEASE NOTE:
I just rechecked the title of the book- I made a typo :-(
In my first message I typed HOW TO BEAK ARTHRITIS WITH IMMUNE
POWER BOOSTERS.
It should have been HOW TO BEAT ARTHRITIS WITH..........
My apologies.
Wishing you all continued healing,
Glenda
RA 2 3/4 yrs, AP 3 mo. Minocin100 mg 2Xday
Hypothyroid 7 yrs, Levothyroxine 150 mcg/day
Osteoporosis 8 mo, Fosamax 10 mg/day, Prempro .625 mg/2.5 mg/day
=========================
From: MHOLMES@... (HOLMES, MARK T.)
Glenda,
Are we sure about the 500 mg of B6 4x/day during flares? That's 2000 mg.
I
was just noticing that the B complex I take contains 31.5 mg or 1575% of
the
daily requirement. I'm not sure I could even do the math to figure the
equivalent in % of daily requirement if I was taking 2000 mg/day. Just
checking to make sure.
Mark
--------- End forwarded message

I am new to the antibiotic therapy and have been diagnosed with fibromyalgia
and would be interested in talking to anyone with the same condition.
Thanks so much.
LuAnn

Hello,
Has anyone tried MSM while on pred., aspirin, RA SPES, and blood
pressure meds? I have some MSM but not sure if I should take it.
Thanks
Denise
NC

Sorry Folks I just found out that the vires information I sent you was a Hoax
I do apologize for any stress this may have caused you.
Go to this URL for info on this virus hoax.
http://www.symantec.com/avcenter/venc/data/wobbler-hoax.html
It states:
The following two messages have been sent out by email. They are both
versions of the same hoax. This "virus" does not exist.
The hoax message includes one of the following "warnings":
Dear All:
For your reference, take necessary precautions.
If you receive an email with a file called
California, do not open the file. The file
contains WOBBLER virus.
WARNING
This information was announced yesterday morning
from IBM; AOL states that this is a very
dangerous virus, much worse than "Melissa," and
that there is NO remedy for it at this time.
Some very sick individual has succeeded in using
the reformat function from Norton Utilities
causing it to completely erase all documents
on the hard drive. It has been designed to work
with Netscape Navigator and Microsoft Internet
Explorer. It destroys Macintosh and IBM
compatible computers. This is a new, very
malicious virus and not many people know about it.
Second sample of hoax message "warning":
VIRUS ALERT
If you receive an email with a file called
"California" do not open the file. The file contains
the virus. This information was announced yesterday
morning by IBM.
The report says that "this is a very dangerous
virus, much worse than 'Melissa" and there is NO
remedy for it at this time. Some very sick
individual has succeeded in using the reformat function
from Norton Utilities causing it to completely erase
all documents on the hard drive. It has been
designed to work with Netscape Navigator and
Microsoft Internet Explorer. It destroys Macintosh
and IBM compatible computers. This is a new, very
malicious virus and not many people know about it
at this time.
Please pass this warning to everyone in your address
book and share it with all your online friends asap
so that the destruction it can cause may be minimized.
Please ignore any messages regarding this "hoax" and do not pass on any
messages regarding it. Passing on messages about this hoax serves only to
further propagate it.

WOBBLER Virus Hoax
Advanced Search
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© 1995-1999 Symantec Corporation
All rights reserved.
Legal Notices
Privacy Policy WOBBLER Virus Hoax
Aliases: California
Known Variants: Hoax
Infection Length: Hoax
Area of Infection: Hoax
Likelihood: Hoax
Region Reported: email
Characteristics: Hoax
Description:
The following two messages have been sent out by email. They are both
versions of the same hoax. This "virus" does not exist.
The hoax message includes one of the following "warnings":
Dear All,
For your reference, take necessary precautions.
If you receive an email with a file called
California, do not open the file. The file
contains WOBBLER virus.
WARNING
This information was announced yesterday morning
from IBM; AOL states that this is a very
dangerous virus, much worse than "Melissa", and
that there is NO remedy for it at this time.
Some very sick individual has succeeded in using
the reformat function from Norton Utilities
causing it to completely erase all documents
on the hard drive. It has been designed to work
with Netscape Navigator and Microsoft Internet
Explorer. It destroys Macintosh and IBM
compatible computers. This is a new, very
malicious virus and not many people know about it.
Second sample of hoax message "warning":
VIRUS ALERT
If you receive an email with a file called
"California" do not open the file. The file contains
the virus. This information was announced yesterday
morning by IBM.
The report says that "this is a very dangerous
virus, much worse than "Melissa" and there is NO
remedy for it at this time. Some very sick
individual has succeeded in using the reformat function
from Norton Utilities causing it to completely erase
all documents on the hard drive. It has been
designed to work with Netscape Navigator and
Microsoft Internet Explorer. It destroys Macintosh
and IBM compatible computers. This is a new, very
malicious virus and not many people know about it
at this time.
Please pass this warning to everyone in your address
book and share it with all your online friends asap
so that the destruction it can cause may be minimized.
Please ignore any messages regarding this "hoax" and do not pass on any
messages regarding it. Passing on messages about this hoax serves only to
further propagate it.
Write-up by: Motoaki Yamamura
Updated: August 26, 1999
Use the index files to locate virus information by name: A-Am Dn-Dz H-Hm
Kn-Kz O-Om R-Rm U-Um X-Xm
An-Az E-Em Hn-Hz L-Lm On-Oz Rn-Rz Un-Uz Xn-Xz
B-Bm En-Ez I-Im Ln-Lz P-Pm S-Sm V-Vm Y-Ym
Bn-Bz F-Fm In-Iz M-Mm Pn-Pz Sn-Sz Vn-Vz Yn-Yz
C-Cm Fn-Fz J-Jm Mn-Mz Q-Qm T-Tm W-Wm Z-Zm
Cn-Cz G-Gm Jn-Jz N-Nm Qn-Qz Tn-Tz Wn-Wz Zn-Zz
D-Dm Gn-Gz K-Km Nn-Nz 0-9 and Special Characters
Cross-reference data provided by Project VGrep.
Implemented with permission of Virus Bulletin.

Hi Group,
Two days after starting B Vitamins, recommended below,
I experienced a 30%
decrease in pain. Four days after starting the B Vitamins,
I came out of the painful Herx that I had been in for 10 weeks.
These recommended vitamins are terrific and I take them,
but I have found that taking Brewer's Yeast (the yellow
flake kind from the health food store is more palatable
than the brown) relieves my pain almost
completely and the inflammation perhaps 50-60 % It sure
beats the NSAIDS which hurt my stomach.
One warning- some people can't tolerate the taste of the
Brewer's yeast.
Notes: 1. Do not take calcium or magnesium with your antibiotic.
These minerals inhibit absorption of the antibiotic.
2. Do not take Vitamin C with B vitamins. Recent research
shows that the B Vitamin absorption is inhibited.
===========================
POWER BOOSTERS, by Carson Wade. pgs. 57-58
Available in the library.
Dr Arnold Fox, MD noted CA internist and cardiologist has found
that certain vitamins and nutrients are able to help stimulate the
immune system and end chronic pain associated with arthritis.
Following is his basic program:
Vitamin A-10,000 IU plus plenty of beta-carotene from vegetables
and fruits-eat 2-3 carrots/day plus green and orange fruits,vegs.
B Vitamins-B complex containing 60 mg of the major B vitamins.
Take this 2X day. In addition to the B complex he recommends
the following:
Niacin-25 mg, 3X day. Gradually increase the dos to 100 mg, 3X/day.
If an unpleasant flush develops on the face or body, reduce the
dosage until the flush disappears. Niacin seems to decrease the joint
stiffness and the deformity associated with arthritis.
Niacinamide- for the very severe cases of arthritis, 500 mg 3X day.
Niacinamide is also a form of niacin but does not cause a flush.
Vitamin B6-500 mg, 2X day, once after breakfast and once after lunch.
During an arthritis flare up, the dosage is double to two 500 mg tablets
after breakfast and 2 500 mg tablets after lunch.
Vitamin C-Dr Fox has his patients take 2 kinds of Vit C. First is a
buffered Vit C powder, a hypo allergenic formula that contains the
following in 1 teaspoon: 2,350 mg Vit. C; 450 Mg Calcium, 250
mg magnesium and 99 mg potassium.
In addition, Dr. Fox has his arthritic patients take 1,000 mg of Vit C in
tablet form, 3X/day with meals. If they are enjoying at least a 50%
improvem