Arthritis, Rheumatoid Arthritis, Ostoarthritis

please remove me from the list, thanks!

Someone sent me this email. If any of you can help her please write. Maybe you
can give her some support even tho you havent died yet. (sick humor)

Anybody out there ever use potato flour or something in that order to
make a dough for a veggie pizza? Thanks! Sandra

http://www.rheumatology.org/education/chicago2000/program.html
There's some interesting info here for an upcoming seminar in the next few weeks
in Chicago. Note that O'Dell will be there, also "tetracycline therapy of RA",
as well as "DHEA in rheumatic diseases".
Note that this is a seminar sponsored by the ACR (American College of
Rheumatology), not exactly a hotbed of alternative methods.
Will be interesting to read seminar notes later.
Mark

I'm reminded of the little boy playing with all his cars, trucks, and shovels in
his sandbox. Right in the middle of the sandbox was a very large rock. He
wanted it out of there and tried several times unsuccessfully to remove it.
Every time he
would push on it til he thought it was budging....it would just roll back into
place.
Finally he reached tears of desperation. His father who had been watching told
him, "Don't cry - you can do it...you just have to use all your strength." "But
Daddy, I did...I did use ALL my strength." The father patiently replied, " No
you didn't...you didn't ask me for help." We all know that then the loving
father removed the rock for his son.
It takes a whole lot of strength to return to good health from rheumatic
disease.
Are you using ALL the strength available to you. The **POPPIES** (Power of
prayer group...40 plus members strong from within rheumatic onelist) are ready
and willing and able to lift you up in prayer to the Father for the added
strength
that you need. Just email me and let me know what your prayer need is and
there will be a new list sent to all Poppies towards the end of the week. If
you
are on January's list...I also need to hear from you whether things are fine or
if
you need to stay on the list. This is also an invitation to any who would like
to
join the poppies group to pray for others. Just let me know.
**When you're down to nothing......God is up to something!!!!!
Judy

For those of you with Ankylosing Spondylitis and related diseases , you might
want to check out http://www.kickas.org/
Mark

MM: How To Grow Sprouts

Hi everyone,
Owing to your great help, I'm improving day by day on AP.
Enjoying running about a half mile a day when I feel good.
Recently I wrote my improvement from RA in my web site.
I received several inquirers about AP. In Japan there are
very few doctors experienced in AP. And language barrier
make my friends who seek healthier life difficult to learn
this therapy. So I've started support mailing list of AP
for Japanese. Being newbie in this myself, I'm going to
ask assistance to all of you here. In case some Japanese
ask me question which I have no way to answer, I will post
this here after translating it from Japanese. Then I will
translate your advice or answer to Japanese again, and post
to my local support group list. Our starting members are
only five including me and Naoya who said hello to you
recently. Please help us, me and Naoya who are going to
support non-English speaker in our country on this.
This is a first question in this trial. Because we have
difficulty finding experience AP doctor, I do want to know
how to judge patients who are "having long standing
or severe diseases" or not. I mean how to judge that
patient need to have "IV clindamicyn" or not. One of our
member seems to be on these border line.
And if patient who have long standing or severe diseases
have started with oral minocycline(Minomycin in Japan) only
and can't see improvement, is it possible to add IV clindy
afterwards? I mean after one year or so from starting.
Any advice which you might give us will be much appreciated.
Regards,
Norio
from Nagoya, Japan

From naoya sasaki (m)
Hello,
Thank you for your emails.
And I am glad at your welcomes, very glad.
I am on MTX 10mg a week, predonisone 5mg a day,
NSAID voltalen 25mg almost everyday, 3 to 8 crp.
A certain person is Norio Ohki.
Via his site I found the support group and the antibiotic therapy.
1/13(thursday), I handed RAdoctor "PROTCOL FOR USING ANTIBIOTICS..."
2/10(thursday), I see the doctor. I am waiting for her good reply.
With her OK I can start antibiotic therapy.
I just want to walk painlessly. I just want to type this keyboad.
Naoya Sasaki
n-sasaki@...

Hello group:
Is anyone else out there taking both Minocin and Zithromax? If so, could you
refresh my memory on the recommended dose of each?
Thanks,
Rhonda

I hope this isn't too bad for you guys but it is too funny not to share
- especially considering it happened. :
disabling
the

Dr. Michael Murray, ND on :
http://www.doctormurray.com/Qarchive/dhea.htm
DHEA
http://www.doctormurray.com/Qarchive/devilsclaw.htm
Devil's Claw
http://www.doctormurray.com/Qarchive/iberogast.htm
Acid reflux
http://www.doctormurray.com/Qarchive/candles.htm
Ear candles
http://www.doctormurray.com/Qarchive/lymes.htm
Lyme treatments

Julie,
The other thing to consider is that your diagnosis may eventually be
something in the broader group of rheumatic illness, but not specifically
RA. After 2 years of unclear lab results, my final diagnosis was reactive
arthritis, which is also treatable by the AP. Being sero-negative was
considered by Dr. Brown to be an indicator of a more readily treatable
expression of an inflammatory arthritis, so this is confusing, but big
picture is good news.
Hang in there--
Jean

I'm left absolutely speechless after reading this ...........and that doesn't
happen very often<grin
I absolutely FORBID all the male members of the group to read this!!!!
hugs,
lisbeth
An exerpt taken from a 1950's Home Economics Book
The Good Wife's Guide.
Have dinner ready, Plan ahead, even the night before, to have a delicious meal
ready, on time for his return. This is a way of letting him know that you have
been thinking about him and are concerned about his needs. Most men are hungry
when they come home and the prospect of a good meal (especially his favourite
dish) is part of the warm welcome needed. Prepare yourself. Take 15 minutes to
rest so you'll be refreshed when he arrives. Touch up your make-up, put a ribbon
in your hair and be fresh-looking. He has just been with a lot of work-weary
people. Be a little gay and a little more interesting for him. His boring day
may need a lift and one of you duties is to provide it. Clear away the clutter.
Make one last trip through the main part of the house just before you husband
arrives.Gather up schoolbooks, toys, paper, etc. and then run a dustcloth over
the tables. Over the cooler months of the year you should prepare and light a
fire for him to unwind by. Your husband will feel he has reached a haven of rest
and order, and it will give you a lift too. After all, catering for his comfort
will provide you with immense personal satisfaction. Prepare the children. Take
a few minutes to wash the children's hands and faces (if they are small), comb
their hair, and if necessary, change their clothes. They are little treasures
and he would like to see them playing the part. Minimise all noise. At the time
of his arrival, eliminate all noise of the washer, dryer or vacuum. Try to
encourage the childen to be quiet. Be happy to see him. Greet him with a warm
smile and show sincerity in your desire to please him. Listen to him. You may
have a dozen important things to tell him. but the moment of his arrival is not
the time. Let him talk first. Remember, his topics of conversation are more
important than yours. Make the evening his. Never complain if he comes home late
or goes out to dinner, or other places of entertainment without you. Instead try
to understand his world of strain and pressure, and his very real need to be at
home and relax.
Your goal. Try to make sure your home is a place of peace, order and
tranquilillity where your husband can renew himself in body and spirit. don't
greet him with complaints and problems. Don't complain if he is late home for
dinner or even if he stays out all night. Count this as minor compared to what
he might have gone through that day. Make him comfortable. Have him lean back in
a comfortable chair or have him lie down in the bedroom. Have a cool or warm
drink ready for him. Arrange his pillow and offer to take off his shoes. speak
in a low soothing and pleasant voice. Don't ask him questions about his actions
or question his judgement or integrity. Remember, he is the master oif the house
and as such will always exercise his will with fairness and truthfulness. You
have no right to question him.
A good wife alway knows her place.

Here's a link from Dr. Weil regarding ear candles
(http://www.pathfinder.com/drweil/archiveqa/0,2283,1322,00.html) and further
down in this note a very funny story by comedian Dave Barry, who most of you can
read in your local papers. Personally, I am not saying whether they are good or
bad - I did have a lady in a Health Food store try to tell me that they would
cure all my ailments and maybe they would - or at least get the wax out? On the
other hand, I've heard warnings also. I've never tried them, but you'll get an
idea as to what they're all about by the time you've read Dr. Weil and Dave's
story below.
Dave Barry:
Today I want to tell you about an Amazing Home Medical
Remedy that you are definitely going to want to try if you are one
of the thousands of Americans who have:
1. Ear wax.
2. Fire insurance.
I am talking about an ear-wax-removal product called "ear
candles." I swear I am not making this product up. Ear candles
were brought to my attention by alert reader Marianna Wright-
Newton, who sent me an advertisement featuring a cartoon drawing
of a man lying down on his side; sticking out of his left ear is a
long, tapered object with flames shooting out of the top. This is
not a small candle such as you find on birthday cakes. This is
more along the lines of the torches that the villagers used to
chase the monster out of Dr. Frankenstein's castle.
The cartoon man's mouth is wide open, and he has sort of a
strange expression; you can't tell whether he's saying, "This
certainly is a fine home remedy!" or "Help! My brain is on
fire!"
I sent my order in immediately. At risk of becoming the
celebrity spokesperson for this dreaded condition, let me come
right out and state that I am an ear wax victim. There are many of
us out here -- lonely, tortured souls, little understood by
society. We can't even talk frankly about our condition with each
other.
EAR WAX VICTIM: Let's talk frankly about our condition.
SECOND VICTIM: WHAT?
So we suffer in silent isolation, hiding our shameful
little secret, doing our best to "fit in," secretly terrified
that one day, in a social setting, somebody will get up and say,
"I know! Let's all look inside each other's ears!"
There is no cure for ear wax. You can temporarily remove
it via an unpleasant process involving chemicals and a squeeze
bulb, but your body just manufactures more. There is a sound
biological reason for this; namely, your body is stupid. Your body
is constantly manufacturing things you don't need, such as ear
wax, fat and zits. Wouldn't it be nice if, just once, your body
would manufacture something you could actually use?
BUS DRIVER: You can't get on this bus without a token.
YOU: But I don't have a Wait a minute ...
YOUR BODY: (Blurp.) (clink.)
You: There you are.
BUS DRIVER: I'm not touching that.
So I sent my order for ear candles off to Quality Health
Products, Box 375, Fayette, Ohio 43521, and several weeks later
they arrived. There were five candles, which made me wonder about
the medical expertise of the folks at Quality Health Products,
inasmuch as the typical U.S. resident, according to the most
recent census data, has an even number of ears.
The candles are actually hollow cones, about 10 inches
long, made of cotton and wax. The brochure states: "Basically, an
ear candle is put into the ear and lit with a match by a second
person. ... The flame creates a vacuum which pulls the wax out of
the ear into the ear candle." Under the heading "Can anything go
wrong?" appears this: "If the ear candle is not well seated in
the ear when you start, you might notice smoke coming out the
bottom. Stop immediately. Put it out and start over. It lost its
draw and was going the other way."
I hate it when that happens.
So I followed the instructions very carefully. I cut a
small hole in the center of a paper plate -- which I assumed was
supposed to protect my head from burning stuff falling from the
candle -- then I poked the skinny end of the candle through the
hole and seated it firmly in my ear. Then I lay down on my side,
with my head under the plate and the candle sticking into the air.
My wife and son and our two dogs gathered to watch. It was a tense
moment, kind of like just before they ignite the rockets in the
Space Shuttle. At my command, my son, Rob, who is 12 and therefore
will cheerfully set anything on fire, including his father, lit
the candle. It flared right up, and I could hear a hissing sound
in my ear, and I thought to myself: What if something goes wrong
here? What would the newspapers say?
MAN KILLED IN EAR BLAZE
Deserved To Die, Authorities Say
But nothing bad happened. In fact, it was kind of a nice,
old-fashioned scene, the whole family gathered around to bask in
the glow of Dad's ear candle. I'm sorry we didn't have
marshmallows.
When the candle had burned down close to my head, Rob, in
accordance with the instructions, extinguished it with a wet paper
towel. I then pulled the candle out and unwrapped it. Because this
is a family newspaper, I will not go into detail about what was
inside, other than to say that everybody was grossed out except
the dogs, who displayed the kind of keen interest that they
usually reserve for rancid squirrel parts.
So I believe that this is a fine product. Even if you're
not an ear wax, victim, you'd probably find it to be useful in
situations where you wish to receive special attention, such as
fine restaurants. ("Waiter, please bring our entrees promptly, as
my ear candle is burning down.") At only $2.50 each, ear candles
also make a delightful gift for the new graduate or the young
woman who has just gotten engaged. ("Will you marry me?" "WHAT?")
(C) 1993 THE MIAMI HERALD
DISTRIBUTED BY TRIBUNE MEDIA SERVICES, INC.
http://Mark_Holmes.tripod.com
http://www.bbonline.com/va/foxhill (Work)
Member of the World Photo Gallery at http://www.WorldPhotoGallery.com

Hi: I was just diagnosed with RA a few weeks ago. One weird thing came up in my
blood work that troubles me a lot. I have a M-spike of negative 4 or something.
My rheumatologist says we'll just watch it and see if it recurs in 3 months. He
said it could mean something bad (multiple melanoma), but most likely not. I am
trying to not think about it and just learn what I can about having RA in
general. But when I do think about it....well I worry a bit. I was wondering if
anyone of you have seen that appear in your blood work.
He followed up with a Bence Jones 24-hr. urnine test. No M-spike was found
there, but my protein was a bit high. Any thoughts? Thanks so much. Pam

<A HREF="http://www.arthritisconnection.com/bin/registr.cgi"
Arthritis Connection</A
Thought some of you might like this site.

Thought y'all might get a kick out of this
Sent: Fri 02/04/2000 06:29
Subject: [oops!]

http://washingtonpost.com/wp-dyn/articles/A16320-2000Jan22.html

Does anyone have a doctor in Lansing Michigan who uses the AP?
My friend just moved there.
Linda

Donna,
Here is the site I promised you for your mom. Sorry I am a few days late with
it.
Bev
http://www.geocities.com/SoHo/Gallery/6412/Raynauds.htm

Hi guys,
I just can't contain myself any longer!!! I found out today that ANOTHER
DOCTOR FROM CALGARY is going to the RBF conf in Los Angeles.That makes two
that I know of.I am so excited I just don't know what to do with myself!! His
name is Dr.Richard Johnson (MD) The hard work is slowly starting to pay

Hi everyone. I'm on vacation and went to the San
Diego Wild Animal Park today. There was an owl, his
instructor said has arthritis in his talons, and they
are curving, and they are treating him with
antibiotics. Isn't that something. Emily

Does anyone know if you have to stop the AP antibiotics temporarily (in my
case Biaxin and tetracycline) while taking Septra? I'm on it for two weeks
to clear up a sinus infection I got tagging along on top of the flu. #:
I forgot to ask my doc about that, and can't reach him for the next
couple of days. Liz G

Hi everyone,
I need some input here. I called and got some info on my blood work
from last week and the nurse told me my sed rate was normal, (2), and I
still have a neg. RA factor. What's up? Have I been misdiagnosed? I've
been on AP since May of 99 and am better until recently when the fatigue
is much worse and the pain is increasing. Appt. with new rheum is in a
little over a week and I'm confused. I'm going to call tomorrow and ask
for a printout of it all and see if I can get more info to you but isn't
this unusual? Thanks.. Julie T.

Hi Gang! Geoff Crenshaw here.
I've just had a wonderful opportunity to once again sit in on a UC Medical
lecture given by Dr. Harry Beecher, PhD, of the USDA at UC San Diego via the
UCTV system. The lecture was old, but it reminded me of the struggle we are
caught between. This is the struggle of the USDA promoting a paradigm shift
in both diet and medical investigation of diet vs. the FDA and their "drug
labeling" desires. Beecher's lecture reminded me that dietary deficiencies
(lack of C or K for example) normally present within a few weeks or months
to at most just over a year or so, like rickets. But, dietary "induced"
problems, chronic diseases, cardiac and cancers, take DECADES to present.
Here is a link for further info. After you review it, (warning: it may take
hours to review "all" of the material) it will be even more obvious why
proper dietary management is so important for us.
Especially interesting is the importance of including large amounts of
various phytonutrients and particularly by name, phytoestrogens and plant
sterols.
Happy reading! (You'll need to copy & paste the full link (probably broken
over two lines) onto one unbroken line for it to work properly.)
http://www.usda.gov:3000/compass?scope=diet+and+cancer&ui=sr&chunk-size=&pag
e=1&view-template=search
HTH
Regards,
Geoff Crenshaw, ACC

Ran across these interesting links on mycobacteria infections:
http://www.medmedia.com/oa4/115.htm
http://www.medmedia.com/ortho1/1333.htm
Liz G

I was just diagnosed with RA three weeks ago and am learning. My rheumatologist
said my case, at this point, is early and mild. I've seen him 3 times in three
weeks (you might say I am nervous and he won't answer phone nor e-mail messages
so I have to make an appt. and go in and see him.)
Anyway, he told my husband and me this stats at each of our visits. He says:
40% of people with RA never even have to see a doc their symptoms are so mild;
40% of other people with RA see a doc. but don't need more than Motrin and
equivalents;
the other 20% have problems and need, what he calls secondary drugs, and have
serious problems.
Has anyone else heard these stats? From all I am reading, it seems like RA
almost always progresses and causes more and more pain for almost all who have
it. I'd appreciate your thoughts, information.
Thanks, Pam

Re: Essential Fatty Acids
The article I recently posted on medicinal hemp oil by Dr. Weil addresses EFA's.
Dr. Weil rec.s hemp oil over fish oils (in capsule form) for EFA's.
Interesting reading..............Joey

Hi,
Did I dream it or did someone say yesterday that nsaids cause damage
(other than stomach lining) over time? Do they make hair thinner or
bones thinner?
Help, I cannot remember anything today.
Gloria

Hello,
I believe, that at least once, I had food poisoning from eating at
a well known fast food place. But, I've had pneumonia, too. Does
that mean I have a double whammy:-( Oh my.
Denise
NC
Get Paid to Surf the Web!
http://www.alladvantage.com/go.aspreid=IZU-573
http://www.getpaid4.com?soldoc

From Raven on the SupportGroup BB

http://www.sciencenews.org/sn_arc99/8_14_99/bob2.htm

http://www.healthcarenewsserver.com/stories/HCN1997082700070.shtml

Julie,
Your messages are not readable by those on the list who use the digest
(there are quite a few). They must be in plain text versus HTML (fancy
colors, fonts, backgrounds, etc.) in order to be read. When you post we
are presented with this:

To everyone...
I sent a response to a provocative but private email and did not notice
it cc'd to the group from the original author. I had thought my response
went only to the author but in browsing through my sent mail just now
see that it also went to the list. This after having sat on it for a day
prior to releasing it, just in case, oh pooh!
I ask your indulgence and forgiveness for 'dirtying' the list with what
should have been a private matter regarding the personal comments about
hot baths.
This sort of banter has no place on the list. I tried this time to make
certain it went private only, but I blew it and I regret having been and
unwitting part to it - I should have paid just as much attention to the
To: and Cc: boxes as to the content.
Again, my apologies.
Regards,
Geoff Crenshaw, ACC

It's been guesstimated that sooner or later every arthritis patient will try an
unconventional remedy to treat the disease. So the Center for Health Services
Research, Roudebush Veterans Affairs Medical Center, Indianapolis, Ind., put
together some focus groups to learn what people with arthritis really thought
about unconventional remedies.
They reported in the journal Arthritis Care Research that people with arthritis
realized that it can't be cured by conventional means. And when they went
looking for an alternative treatment, they weren't concerned about the price if
it would just relieve their pain.
Most spoke to their doctors about the use of alternative therapies. The patients
weren't looking for approval or permission -- but they did want to avoid
interactions with conventional drugs they were taking.
Nobody trusted the ads in supermarket tabloids or on television, but they would
follow the recommendations of family members, or friends with arthritis.
-- Sam Uretsky

But still they wont look at the infectious theory!!!
sarah
Target of attack on joints not limited to joints themselves
By Adam Marcus
HealthSCOUT Reporter
SUNDAY, Nov. 28 (HealthSCOUT) -- In a finding that upends traditional notions of
arthritis research, scientists have found a surprising new twist in the way some
forms of the disease trigger attacks on joints.
Experts have long believed that rheumatoid arthritis is an autoimmune disorder
in which the body's defensive cells attack joint tissue. That's still true.
What's new, researchers say, is that the target of the immune system's onslaught
is everywhere in the body.
The work, which appears in this week's issue of Science, won't benefit patients
in the short run. Even so, experts say, it sheds important new light on the
nature of rheumatoid arthritis that could one day lead to better treatments for
the millions of Americans suffering with the crippling condition.
The pain and swelling from rheumatoid arthritis are the result of an assault by
T and B cells. For some reason, in patients with the disease these cells act as
the immune system's hatchet men, with specific orders to hit the joints but
leave other organs alone.
The narrow nature of the destruction has led scientists to believe, not
unreasonably, that these killer cells are probably homed in on chemical signals,
called antibodies, unique to joints.
In the latest study Diane Mathis, a professor of medicine at Harvard Medical
School, and her colleagues in Strasbourg, France, were looking for precisely
these markers.
Damage is throughout body
Using a strain of mice that spontaneously develops rheumatoid arthritis,
Mathis's team, including Christophe Benoist and Isao Matsumoto, injected blood
from the arthritic mice into healthy animals, who quickly developed arthritis,
too.
However, when they purified the antibodies in the newly ill rodents, instead of
finding joint-specific proteins they saw glycolytic enzyme -- an omnipresent
molecule used by every cell to help process energy.
"Most people in the field have thought that the trigger should be a protein
found in the joints," says Mathis. "What we found in this animal model is that
the antigen is found all over the body."
Which begs the question: Why do mice -- and, by extension, people -- develop
joint disease rather than systemwide damage?
Mathis says the answer isn't clear, but there are two good possibilities. The
first is that glycolytic enzyme is somehow expressed in the joints of arthritis
patients in a way that immune cells find threatening.
Or, she says, perhaps the enzyme is similar everywhere in the body, but the
physiology of joints changes the way it's seen by the immune system. Joints, for
example, have more blood vessels than many tissues, and lack a so-called
"basement" membrane that other organs have. Only further studies will resolve
the question, she adds.
John Klippel, medical director of the Arthritis Foundation, calls the finding
"fascinating" from a scientific standpoint. But "what this has to do with
patients at this point is anyone's guess," he says.

Sorry, here it is.
New Addition to the Periodic Table

In the midst of all your writings pro and con re Methotrexate and the
latest documentaries on AP therapy, I would like to just throw in this
latest scientific finding for your consideration. Have a great day.
Sandra

By Robert Preidt
HealthSCOUT Reporter
SUNDAY, Jan. 30 (HealthSCOUT)-- Hold your nose and swallow your grandma's
advice: here's more proof that cod liver oil is good for you.
The Omega-3 fatty acids in cod liver and other fish oils already have been
proven good for your heart. Now scientists at Cardiff University in Wales have
found they also can ease the pain, inflammation and damage of arthritis.
Working with cartilage in the laboratory, the researchers found that Omega-3
fatty acids become incorporated into cartilage cells and reduce the activity of
enzymes responsible for cartilage damage.
"In joint tissues --that's where arthritis manifests itself -- the presence of
Omega-3 fatty acids in the cells of the cartilage could stop the production of
the enzyme that destroys cartilage in arthritis, which often leads to people
having joint replacements," says lead researcher Bruce Caterson, a professor in
the Connective Tissue Biology Laboratories of the School of Biosciences at
Cardiff University.
The fatty acids, he says, also cause a recently discovered enzyme, called
cyclooxygenase-2, to "switch off." This enzyme acts as a catalyst for much of
the pain and inflammation in arthritis.
In addition, the fatty acids also have the ability to "switch off" the
enzyme-initiated processes which prolong arthritis pain and inflammation.
Just how the Omega-3 fatty acids switch off these enzymes isn't clear, but
Caterson, who has specialized in cartilage arthritis research for about 30
years, says he plans to study that process.
The findings, published in the Jan. 14, 2000, issue of the Journal of Biological
Chemistry, are of special note because the pharmaceutical industry is trying to
find specific drug inhibitors of cyclooxygenase-2. The Cardiff research may help
define new targets and strategies for new drug development, Caterson says.
Scientists have been examining the association between Omega-3 fatty acids and
arthritis for more than 10 years, and a number of clinical trials focused on
treatment with Omega-3 fatty acids, says Caterson. "The data is clear that many
people, not all, have been able to reduce their taking of medicines for pain,"
he says.
Dr. John Klippel, medical director for the U.S. Arthritis Foundation, based in
Atlanta, Ga., says many clinical studies have shown that a diet high in Omega-3
fatty acids reduces arthritis activity.
He says he was aware of the benefits of Omega-3 fatty acids in relation to
rheumatoid arthritis but didn't know scientists were looking at its effects on
cartilage.
"I think this is an important scientific step forward which, I think, quite
likely will have therapeutic implications," he says.
However, Klippel warns people using arthritis medicines not to automatically
switch to cod liver oil. Consult your doctor first, he says.
"This is not a substitute for what you're currently taking," he says.
But he adds a caveat: "That's not to say, for instance, that if one uses these
oils and the disease gets better, that one can't then reconsider the need for
some of the medications."
What To Do
For more on alternative therapies for arthritis, check these previous
HealthSCOUT stories on olive oil and glucosamine.
For more information on the benefits of Omega-3 fatty acids in fish oils, you
can get the book "The Arthritis Foundation's Guide to Alternative Therapies," by
calling (800)207-8633 or order it at their website, the Arthritis Foundation.
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

Hello, Group!
Just wanted to let you know that in the great realm of things, my
attitude is changing. I was really funked out - like that word?- over
giving up some of the foods. I have always lived to EAT. Now, with my
priorities changing, I am learning to eat to LIVE. My family looks at
the Ezekiel bread and the Manna and make gross sounds. But the truth
is, the Manna is delicious toasted in the broiler with a little butter.
Maybe it is like scotch, it supposedly grows on a person, although I
never grew to like scotch. The Ezekiel bread is somewhat dry for my
taste but I made a vegie burger last night using the Ezekiel bread and
toasted it, too, while the rest of the family had regular burgers. And
I was happy. Now for the question. I don't seem to have digestive
problems so with that in mind, what about popcorn? luv it ... I notice
by reading the two diets, one says no and the other does not mention it
at all. Health and Happiness to all and Hello to New Zealand! Sandra

Confused immune cells fight healthy cells, too
By Janice Billingsley
HealthSCOUT Reporter
TUESDAY, Feb. 1 (HealthSCOUT) -- Salmonella can trick your immune system into
confusing friend with foe, a new study says.
Researchers found that immune cells activated to fight salmonella bacteria in
mice can also get stirred up to attack similar-looking normal cells, damaging
healthy tissue and causing autoimmune diseases like arthritis.
"The immune system can be fooled," says Mark Soloski, associate professor of
immunology at Johns Hopkins School of Medicine and head of the research team for
the study, "and the evidence suggests subtle changes that could underlie many
autoimmune diseases."
The study's results appear in the February issue of Nature Medicine.
Soloski's team focused on the salmonella bacteria, known to cause food poisoning
but also long thought to trigger arthritis in up to 10 percent of those who get
food poisoning. For most, the arthritis lasts only a few weeks, but some people
get a severe long-lasting type of the disease, he says.
The scientists observed the immune cells, called cytotoxic lymphocytes (CTLs).
The lymphocytes recognized the bacteria-infected cells by "flags," which are
small pieces of bacterial protein on the surface of the cells that, "in effect,
say, 'Here's a sick cell,' " explains Soloski. The CTLs then docked with the
infected cells, causing them to self-destruct.
Stressed-out cells hurt
However, researchers then found that at least half of the CTL cells also saw as
the enemy parts of common, healthy molecules that were on the surface of normal
cells. These "universal housekeeping molecules," as Soloski calls them, are
found in humans as well as mice and help proteins keep their shape.
Having the CTLs recognize so much of the mice's healthy tissue as a target is "a
huge immune response," Soloski says.
Researchers further discovered that other healthy cells were vulnerable to
attack by the CTLs if they were stressed by being exposed to higher temperatures
or radiation. This suggests that environmental factors could also play a part in
why CTLs attack healthy tissue.
"If these cells play a role in destroying tissue, what were the conditions that
allowed this to happen?" Soloski asks. He also wonders how this immune response
translates into arthritis only in some mice and humans.
"Salmonella has been known to be associated with reactive arthritis. More and
more we are able to understand that the disease is not caused by direct
infection but by creating cells that destroy the joints. The question is why
some people react and some people don't," says Dr. Harpinder Ajmani, clinical
instructor at the University of Illinois Medical College in Chicago.
What To Do: Avoiding food poisoning is largely a matter of common sense and a
little good luck. For information about salmonella poisoning, go to the Centers
for Disease Control and Prevention. For a fact sheet about the different types
of arthritis, see the Arthritis Foundation.
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 Road Back Foundation is holding another Dr's conference on Antibiotic
Therapy on March 25 in Los Angeles.We have been working very hard here in
Calgary,Alberta Canada to get someone to go as we are also close to the West
coast.(just a tad North!!) Instead of mailing the brochures we hand delivered
them.I am excited to say that our dear Dr.Jeanette Soriano AND two of her

Has anyone had a problem with ear infections with RA? I have never had one in
my life and have excellent hearing until two Saturdays ago when my ear started
to hurt. I thought it would ease by itself and didn't go to the doctor til the
next Thursday when it was impossible to sleep from the pain. He said I had a
bad infection and syringed it out with warm water and gave me 6 Zithromax tabs
and ear drops. It was fine for a whole day then started to fill up with liquid
again and ache. I went to emerg last Monday midnight because my daughter had a
bad reaction to some meds she just started and the nurse on duty looked at my
ear and phoned my gp at home and he gave me Tylenol 3. By the time we got home
we were all too wound up to sleep anyway and I ended up not taking the Tylenol 3
because I didn't want to be groggy and out of it in case Jenn felt ill again.
When I went to my follow up apt yesterday, my gp syringed the ear again and
cleaned it with a crochet hook type thing and it felt so much better. He had
me hold my nose and blow to build up pressure in my ear and said I have a
perforated ear drum. I can't understand where this could come out of nowhere.
No one else is sick. Is it part of my RA or something that just happened. I
have to see an ear, nose and throat specialist when they make the appointment
for me.
Also I have been off Minocin since last Thursday because the pharmacist
suggested I don't take it with Zithromax so today is the first day in a week I
will be taking it. I haven't noticed any difference taking the Zithro or not
taking the Minocin. Sometimes I wonder if I quit all the meds, would I still
feel the same.
Bev

I don't know what they are called but the best mattress I've seen was the
one in the nursing/rehab center I was just in. Just touching it I thought
it was going to be hard and horrible. However, it was the best I've ever
seen. It was some sort of gel and there was a switch to make it softer or
firmer. There were a lot of buttons built into the side rails for
television, lowering or raising the feet or head etc. I sure wish I could
have brought it home.
The Kaiser hospital had an earlier version without the softer/firmer option
but it was also very comfortable. I can't sleep on my back in my own bed
because it kills my back but I had no problem with that on the gel mattress.
I had my total hip replacement revision January 21st. It took two hours and
I have had no complications. It hurt but the pain has been managed well and
isn't bad. I was already on oromorph and percoset because of my knee and
hysterectomy and all they did was give me some extra morphine in the
hospital and instead of a percoset every now and then in the rehab they gave
them two at a time at first. I'm on 30 mgs every 12 hours now and I have
percoset for the breakthrough pain. I only took a couple today. The
incision is big and still has staples in it, but they are coming out Friday.
I'm grateful my doctors aren't stingy with the pain medications; otherwise,
these past few months would have been intolerable.
The doctor says I will have the total knee replacement around April or maybe
May. I had the hysterectomy on 12/23 and this hip done on 1/21. My body
needs to recuperate and I am already used to being in the wheelchair and
housebound. I can do a few more months. I have had problems with the
clinical depression but I have a psychiatrist prescribing anti-depressants
and I trust him to work with me.
While I was in the hospital my blood sugar up over 300 and I was diagnosed
with diabetes mellitus type B and put on a little green pill-glucophage??
At first they were giving me insulin shots but I put the kibosh on that.
I'd get a tray full of sugary stuff and starches and then they'd give me the
insulin shot. I told them to stop and then an internal medicine doctor came
in and we discussed how to proceed and that's how I got to switch to the
pills.
They sent me home with a booklet that says for starters that I will have
this forever. Dejavu. That's what a doctor told me about the rheumatoid
arthritis. I'm going to do research about this and I hope to reverse this
or at the least control it through diet. The last couple months I went nuts
with milk and butterbrickle ice-cream. Weirdly, this did not set off an
arthritis flare but I'll bet that explains the blood sugar. I figured
either the brain tumors or the cancer was going to get me so what the ...
Now it appears I will be living so I will not be eating like a three year
old and prefer not to have a death by sugar.
As rotten as my medical problems have been I am so darn grateful I found the
antibiotic protocol. I can't imagine how awful this ordeal would have been
with my hands red and swollen like lobster claws. As bad as my knee is it
still doesn't hurt as badly as when I was flaring with RA. That was such a
constant and increasing pain.
I'm able to keep hanging in and maybe by this summer I will be able to walk
again and even drive my car.
I got a new commode today from the senior center. The other one was too
narrow and hurt my incision. This one is wide and reminds my of the old one
hole out houses of my childhood. I never thought the high point of my day
would be getting a bigger commode. Life is full of surprises and, believe
it or not, I'm sticking around to see what happens next.
Denise

I've noticed a lot of you are taking olive leaf extract. What is it exactly and
what does it do. I've looked in health food shops here in England and no one
has heard of it and I can't find it. I've even looked on the net and can't seem
to find it.
Thanks
Carol W

Dear Sir or Madam,
I am sorry to be late for this email to you.
I am new,
52-years-old, suffering from RA for 6years,
on MTX now, and from Japan.
3 months ago I bought PC and started the internet.
I knew your support group and antibiotic therapy
on site of a certain person.
I will make efforts to read and write your English language,
because I wish I start antibiotic therapy.
Thank you for me to subscribe your group.
Very truly yours,
Naoya Sasaki

Welcome Naoya in Japan:
I am happy that you are a member of our rheumatic support group/ family. I find
much
wisdom, knowledge, and support/encouragement and new findings and
sharing here. It has been a tremendous comfort and help to me.
It is after midnight. I am in pain tonight. I need to get to bed, however. I
have fibromyalgia, rheumatoid arthritis, asthma, thyroid problems right now it
is in
hyperthyroidism (although I need to lose weight, what are those odds!) and
degenerative
osteoarthritis in various other parts/spine/knees, etc. I also have sjorgens. I
am still
on predisone. Since my hospitalization earlier part of Jan. I have had to be on
high
levels of predisone for asthma. I am not cutting back once again.
I see a rheumatologist Feb. 11th. Hopefully, this one will be kinder, and have
more knowledge!
This note is to all the group, Hi and Thoughts of love/friendship in this month
of February
to each of you.
Thanks everyone.
Martha Smith
St. Augustine, Florida

I was recently reading my Autoimmune Related Diseases Assoc. newsletter and
thought I might quote a few items and then offer up an address of someone you
can write to: This is your opportunity -
"Autoimmune diseases, which have long been considered rare, have moved to the
top of the national women's research agenda by the National Institutes of Health
(NIH), according to a new report issued by NIH's Office of Research on Women's
Health (ORWH) entitled, "Agenda for Research on Women's Health for the 21st
Century" .
... Vivian Penn, M.D., director of ORWH, discussed various autoimmunity research
initiatives at NIH, which number the greatest in history, including those
co-sponsored by her office and others suppoprted by a recent $30 million NIH
appropriation....... She said that current NIH and ORWH research projects are
building on what we already know and are aimed at closing some of the gaps in
current knowledge.....
Dr. Pinn also discussed other autoimmune disease research projects that ORWH is
co-funding with other NIH institutes, such as one study that is looking at the
role of antioxidants and female hormones in the cause of rheumatoid arthritis.
In terms of the new research agenda, she said ORWH is recommending studies
focusing on the role of genetics, environmental influences, age, pregnancy,
hormones, and other biologic influences on the cause and progression of
autoimmune diseases."
Well, if this isn't an opportunity to throw in your .02 worth, I don't know what
is. So I did a search for employees at the NIH web site and turned up Dr.
Pinn's email address which is indicated below along with her fax and phone
numbers. Since I could look it up, it would seem to be public knowledge. I
would think a carefully worded and well thought out email or letter to her would
go a long way in advancing the possibility of research into minocycline,
especially if she received a bunch of them. You can write to her c/o Dr.
Vivian Penn at the address listed below or you can fax, email her or whatever at
the information listed below the address. I would suggest you mention that you
noticed an article about their agenda in the Autoimmune Related Diseases Assoc.
newsletter. You can also find more information at ORWH's web site at
http://www4.od.nih.gov/orwh/overview.html I should suggest that you not mention
that i suggested you write her - after she gets about 400 letters, she might
decide to come after me with a gun! :)
Mark
NATIONAL INSTITUTES OF HEALTH
OFFICE OF RESEARCH ON WOMEN'S HEALTH
c/o Vivian W. Pinn, M.D.
Associate Director for Research on Women's Health, NIH
Director, Office of Research on Women's Health
Building 1, Room 201
9000 Rockville Pike
Bethesda, MD 20892-0161
Mail addressed to vp3w@... will be forwarded to pinnv@...
email: pinnv@...
name: Vivian Pinn
alias: vp3w
proxy: Service_Account@...
phone: 301-402-1770
address: 1/201
IC: OD
fax: 301-402-1798
title: Associate Director for Research on Women's Health
lastname: Pinn
verified_by_user: 9 Mar 1995 10:34:00

This is from the Great Smokies Diagnostic Lab's newsletter.
Linda
OMEGA-3 FATTY ACIDS PROTECT AGAINST CARTILAGE DESTRUCTION
==============
- DOWNREGULATE COX-2 INFLAMMATORY RESPONSE IN ARTHRITIS
For quite some time, studies have shown that patients with arthritis
who supplement with omega-3 (n-3) fatty acids, commonly found in fish
oil, often feel an improvement in many symptoms. Yet until recently,
researchers have not been able to explain many of the precise
mechanics whereby these critical dietary nutrients protect joint
tissue.
It may be all in the genes, as they say - or at least in the
expression of genes. To mimic the effect of free fatty acids in the
human bloodstream, researchers from the Connective Tissue Biology
Laboratories at Cardiff University in Britain exposed cartilage cells
(chondrocytes) to omega-3 fatty acids and observed their response to
inflammatory and immune system mediators.
They found that omega-3 fatty acids significantly slowed down genetic
transcription of several primary triggers of cartilage destruction:
reducing the enzymes (aggrecanases) that degrade important
constituents of cartilage (proteoglycans), decreasing inflammatory
cytokines like interleukin-2 and tumor necrosis factor, and
downregulating the inflammatory pathway mediated by cyclooxygenase-2
enzymes. Significantly, omega-3 fatty acids acted as selective
inhibitors and did not interfere with the less inflammatory
cyclooxygenase-1 response, thereby preserving healthy metabolic
function.
The data "conclusively indicate" that these genetic molecular
mechanisms are specific for the omega-3 fatty acids, said the
investigators. Because these nutrients help block the genetic
expression of the key mediators of joint breakdown in arthritis, they
play a "beneficial rolein alleviation of several of the
physiological parameters that cause and propagate arthritic
disease."

This is from the Great Smokies Diagnostic Lab's newsletter.
Linda
- ESSENTIAL FATTY ACIDS: IMPORTANT NUTRIENTS FOR HEALTHY LUNGS?
==============
- BOOST RESPIRATORY FUNCTION IN LUNG DISEASES & AGING
The proper balance of fatty acids may give everyone a reason to
breathe easier.
Smoking, asthma, and bronchitis all wreak havoc on respiratory
function by inciting chronic inflammation in the lung. Balancing
fatty acids may be a key nutritional approach for curbing these
inflammatory mechanisms, reducing symptoms of lung disease, and
slowing the decline of respiratory function, according to a recent
article in the American Journal of Clinical Nutrition.
Increasing the amount of omega-3 fatty acids in the lipid membrane of
cells in the body can impact the activity of key modulators of lung
disease by:
Blocking the leukotrienes that incite bronchial passages to
constrict
Impeding the recruitment of neutrophils that trigger chronic
inflammation
Studies show that fatty acids also reduce other pro-inflammatory
mediators (thromboxane B2) associated with lung damage and that
specific deficiencies may play a role in the progression of diseases
such as cystic fibrosis.
For healthy individuals, proper fatty acid nutrition may even help to
guard against the "natural" decline of lung function associated with
aging.
"The human lung has evolved during a period when the total intake of
fatty acids and the distribution of types of dietary fatty acids were
considerably different from those of today," points out author Joel
Schwartz of the Harvard School of Public Health. Changes in fatty
acid composition in cell membranes brought on by the modern diet,
such as higher levels of linoleic acid and saturated fats, may impair
lung function, even in healthy people who don't smoke.
"Healthy persons who have never smoked lose approximately 30 mL of
forced expiratory volume per year of age because their lungs are
constantly being challenged by both infectious agents and particles
that elicit inflammatory responses, such as aeroallergens or
combustion particles," Schwartz notes.
A National Health and Nutrition Examination survey revealed that
people who ate a lot of fish had an 80 mL increase in forced
expiratory volume. Fish-eaters also showed a 25% reduced risk of
bronchitis and 18% lower incidence of wheezing, although these
benefits were also linked to other nutrients in the diet, such as
vitamin C, sodium, and potassium.
Although clinical results are mixed, long range intervention studies
have reported improved lung function in asthmatics in response to n-3
fatty acids, including a reduced airway responsiveness to allergens,
especially in children.

My additional 2 cents: I've mentioned this before and feel it's important to
note that Dr. Trentham told me that I might expect to be on the AP for "2 to
3 years" but, of course, we'd have to see how I progress. This indicates
that remission is possible on the AP. For me, it is a possibility because
(as he noted):
1. I started AP early
2. I was doing well on the methotrexate
It also indicates to me that:
1. I do not have to stay on methotrexate for life (obviously, since I'm
weaning off)
2. Everyone is different in their response to RA meds (such as Mxt) and to
the AP.
For all I know, my prognosis may change. Certainly I hope not but remain
very optimistic, given my current rate of improvement since starting the AP.
Babs
RA 8/98, DX 4/99, AP 11/99
200 mg. Minocin
2.5 mg. Methotrexate
112 mcg. Synthroid
2 mg. Hytrin
10 mg. Lipitor
Mestinon
Vits. & Misc. Suplmts.

My 2 cents: Methotrexate, despite all the bad "joo-joo", was a Godsend for
me before I started AP. It allowed me to wean off the prednisone and
provided a tremendous reduction in swelling, pain, chills, etc. I was on
10mg. before seeing Dr. Trentham to start the Minocin. I am down to 2.5mg.
I have done much, much better since starting the AP but I have to say that
the methotrexate allowed me to function after a period of excruciating agony.
If the AP did not work for me (so far, so good...), I certainly would have
to stick with the Mxt. as long as I could despite the negative side-effects.
('cuz I prefer that to crawling, too!)
Babs
RA 8/98, DX 4/99, AP 11/99
200 mg. Minocin
2.5 mg. Methotrexate
112 mcg. Synthroid
2 mg. Hytrin
10 mg. Lipitor
Mestinon
Vits. & Misc. Suplmts.

I am very curious about diet at this time. Gary said that he used a
particular diet and went into remission. I have seen Dr. mercolas diet. I
hav a book entitled "Freedom from arthritis through nutrition". I also
recently spoke with a retired Nutritionist who believes he can reverse my
arthritis with food and whole food supplements. Anything on what are the
best diet recommendations? All diets seem to vary.
Cindy

RE: From: jackiecn@...
"We did lots of research on a mattress."
Hmmmmm, now that sounds like fun research........ ;
(sorry, couldn't resist!)
Babs
RA 8/98, DX 4/99, AP 11/99
200 mg. Minocin
2.5 mg. Methotrexate
112 mcg. Synthroid
2 mg. Hytrin
10 mg. Lipitor
Mestinon
Vits. & Misc. Suplmts.

Mark, I am curious how your rheumatologists perceive the use of minocin? I
see that they went along with you trying minocin or did they prescribe it?
What conclusions brought them to encourage you to begin the methotrexate?
Do they believe that the minocin will eventually work for you in some
capacity? My thought for you has always been to see one of the experienced
doctors in AP to see if they could help you fine tune your meds. Its
important to understand how the doctors at NIH are seeing this therapy,
because they initiate some of the treatment trials.
Cindy

Hi,
I hate to bring this up, but I read in the paper today that a
twenty-one month old girl died of RA. That is all it said. What do you
think kills someone who dies of RA?
I mean what complication of RA can kill us? Does anyone understand this
and know
the answer. I have asked my doctor, but he never really answered it.
Thanks,
Gloria

Hi,
I sprinkle lavender essential oil on my pillow, also. Lavender is
suppose to relax. I don't know if it really does but I love the scent
of lavender.
Denise
NC
Get Paid to Surf the Web!
http://www.alladvantage.com/go.asp?reid=IZU-573

Anyone know where Dr. Chiu went? I've noticed questions directed to him
(including my own) have gone unanswered in recent weeks. In rehab clinic for
chocolate addiction?
Mark

Folks if you use Netscape, under view, you have the option to wrap long
lines in your viewing window. Meaning if they sent it unwrapped you can
view it wrapped. I dotn think IE has that but it must automatically wrap
them because I am seeing no unwrapped lines in either one. If you read
the digest online and someone sent in unwrapped lines you will have to
scroll your browser window.
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

Hi everybody,
I have dropped out for a while and I was surprised to read so
much about methotrexate without anybody mentioning the study that came out
just a few months ago on using Remicade with it, it stops the destruction
of the joint. You can read about it at: http;//pslgroup.com/dg/14745a.htm
I have a 33 year old friend who was on metho for a long time, she was happy
with it, she wasn't in too much pain, but already had both hips replaced.
Remicade will help stop the need for joint replacement. Of course the
antibiotic therapy seems much better, having hope to completely get rid of
the disease. I still didn't try it, but I have the minocin and tomorrow I
am going to my physician to discuss it furhter.
Please wrap your lines, some were way too long to read.
Hugs, Agnes

Sometimes, but certainly not always. I've known a number of patients
that plodded on with the therapy when they didn't see results for much
longer than six months.
I'm thinking of one of Dr. Brown's worst patients. It took 3 years for
her to just turn the corner. Then there was mamalana. Anyone in the
group remember her? She was a great contributor to the group back when
we first started this list. She experienced absolutely no positive
signs for two years. Then things started turning around for her.
However, at the six month point, if you haven't done so already, it's a
good idea to check for other infections in the body that might need to
be addressed in order for you to receive optimal benefit of the AP.
Ethel

BTW arthritis also makes you a bad speller LOL
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 Tempurpedic mattress is wonderful. We have had both waterbeds and
conventional mattresses, and none compare to the Tempurpedic. Somebody
wrote that it takes a few weeks to get used to, and that is correct. The
"getting used to it" is not due to any discomfort, though. It is because it
is so different than anything most people have ever slept on. I highly
recommend it.
Kari

One thing I have found helpful when seeing a new rheumie is to send him a
letter ahead of time outlining your whole situation and what you are trying
to get out of the experience. This sort of paves the way and saves him and
you a lot of time when you have the initial appt. (assuming he has taken the
time to read the letter - that alone will tell you plenty).
Also, it is helpful to have a complete medical history typed up ahead of
time. You can always fill out the forms they give you, but I like to give
them my version. This generally is appreciated by the doctor and also
serves the purpose of notifying them that they are not dealing with a
doofus. I include all meds as well as all herbals. It wouldn't hurt if you
brought along some backup info for why you are using the particular herbals,
but I wouldn't lay that on them necessarily, unless they ask. Since they
might be afraid to express their ignorance on the subject, you might ask
them, "do you see any problems with the herbals I am taking in conjunction
with the medications?" That will elicit some response for sure and if they
say they don't know a whole lot about it, you can then produce your info and
suggest that perhaps when they get a moment, they can read it. They can be
very busy folks though, so you need to keep this to a minimum (something I
find hard to do, but is important to be cautious initially so that they
don't think you're going to be a pain in the butt right off the bat).
Mark
Mark

Hi,
Could someone please tell me what serum folate is all about?
thanks,
hugs,
lisbeth

I was reading the rheumatology textbooks last night about how to diagnose
patients. I will say if a doctor followed these procedures for someone who didnt
show an obvious certain disease, he would probably spend at least an hour. It
tells them how to word questions to get best answer from patients as we ofton
misinterpret what is going on and use wrong words to describe.
Such as not ask how long you are stiff but how long after you get up before you
are at the optimal level of your functioning for that day? And that ofton
fatigue is used to describe what is really muscle weakness that is tiring us out
but that we associate fatigue with the normal muscle weakness of overuse or flu
and thats what we use to describe it.
Said they should ask all sorts of questions, test range of motion etc. It said
that at FMS exam done properly is exhaustive for both the patient and the
doctor.
If I had ever seen a rheumy who followed what the textbook says I would have
felt like he was doing thourough job and paying attention to me. The closest any
doctor came to this was my orthopedic doctor who did all this but back when she
took the tests they showed just the very slightest elevation which was ignored.
Also once my regular doctor caught on to checking for RA he took all the symtoms
into account and decided I had it and if I didnt the antibiotics would still be
the best thing to try and wouldnt do me any damage.
The rheumy I saw spend about 5 minutes with me. His exam consisted of glancing
at my joints and seeing no swelling. Asked vertually no questions. X rayed my
knees that had just started hurting me a lot and found nothing so said they were
fine. He poked me 4 places while I was sitting down for the FMS exam. Two spots
were tender and two werent. He ignored RF factor about 3 times normal, sed rate
of 60, ANA at 1/160 in speckled pattern that also mentioned Sjogrens. Never
asked me anything about my eyes. His diagnosis was FMS and some infectious
disease he didnt know of and that I should go see the infectious disease
specialist, who unknown to him, had been treating me and had given up because he
didnt know what was wrong. Then he charged Medicare 160$, had me come back the
next week and told me exactly the same thing for another 160$ and then he
expected me to make followup appointments to come see him.
Remember my eye plugs adventure? My two neighbors go to the same eye doctor and
he wanted to plug their tear ducts too. He did the man and now his eyes water so
much he looks like he is crying all the time and has to use a handkerchief to
wipe his eyes all the time. He is obviously allergic to things and I think thats
what probably was making his eyes itch in the first place. If he cuts firewood
the sawdust makes his entire face break out in a beet red awful looking rash. I
looked at his duct plugs and they didnt stick out like mine did so I think that
is what was really hurting my eye so bad with them. Everytime you go see this
doctor no matter if its only a week apart they do a complete glaucoma and all
the other eye tests and charge medicare. Again 160$ a visit. This seems to be
the standard medicare charge by all the specialists here in the lowest income
area in the United States.
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

Geoff--
Hot water soaks are absolutely contraindicated for hot swollen joints. You
seem like a nice person, but you send out so much personal opinion as
authoritative answers that I think you may sometimes do more harm here than
good. Are you a doctor? A lawyer? What qualifies you to make so many strong,
and in my opinion questionable, statements on such a wide range of subjects?
Just recently you definitively stated Lyme disease is caused by a virus,
clearly not true. Just seems to me that you should be a bit more careful in
researching and wording your opinions.
Jean

Dear Group,
My daughter Emma just completed 3 months on the AP under the care of
David Trentham and I thought I'd write to let you all know how she is doing.
Things continue to be rough going for her. She flared pretty severely during
the first two months and we have seen some lessening of that. We see
improvement mostly in her ability to sleep. During the first 2 months she
had to have a Tylenol with codeine to help her get through the night which
was restless and painful for her. Since the end of December she is sleeping
deeply and comfortably. Some of her pain and stiffness have improved as
well. Her shoulders which were flaring horribly at first have no more pain,
her hands and wrists, though joints are swollen, are also pain free. However
her knees which were acting up right before starting the AP continue to
plague her, swollen and painful, she's very shaky when walking and stairs are
torture. Her spirits are really down since she is still unable to go to
school and her friends have not really been there for her I am sorry to say.
She feels as if she has no life and lately has really been grieving for the
losses she has experienced with some prolonged crying jags.
We are trying to keep the faith, reading the postings really helps me and
I am grateful to all of you who write with such regularity. I also reread
the medical histories on the web site to remind myself of the perseverance
necessary to achieve the goal of a return to health. I do have doubts
sometimes-should she be showing more signs of improvement by now if this
therapy is going to work for her? How long will she have to suffer? Thanks
again for listening.
Good health to all of you
Sincerely,
Kathy Rosenberg

I have noticed that in the Arthritis books and on this websit some people say
"stay away from methrotrex"? Am I hearing this correctly? I have noticed that
some people take it. What exactly does this medication do and are some of you
taking it with the AP to get over the hill? Sorry I'm so ignorant in these
medications. Thanks.
Donna Sapp
in the South

Bev and Sarah,
I had similar problems and hated to use any kind of medication. SO I tried
"Breathe Right" They are like a band-aid with a spring action that you wear on
your nose. It opens up your nasal passage. Only drawback is that they make you
look like a pig so I suggest you only use at night. (unless you like that look)
Try them they really work! Any pharmacy has them in the section you find all
the nasal products. They come in Small , Med, or Large sizes. They are
packaged in 10 or 30 each and are about .50/each. Sometimes you can get them on
sale for less. Hope this "Clears" you up. Doris

We did lots of research on a mattress.
We are really happy with the Tempurpedic. It is
heaven. It took about 3 weeks to get used to it.
It's made a huge difference in how we sleep and
the low back pain has disappeared.

They all have high phosphate levels and leach
calcium from the bones, which none of us can
afford when dealing w/ RA.

Hi .......I kind of answered my own question with a little research. Found this
great article on hemp oil, by ANDREW WEIL, MD. Very informative - I've
highlighted in color some of the more prevelant sections, but the whole is
certainly worth reading, I think.
And, Gary. Who knows, maybe you CAN smoke it, but I bet you wouldn't get
the expected results!
Be well.........Joey
................................................................................\
..............................................
Therapeutic Hemp Oil
by Andrew Weil, M.D

Hi,
I looked vioxx up on the Internet and it said to tell your doctor if
you have asthma.
Does anyone know why? What bad could happen? Does anyone know if Soma
can affect asthma?
thank you,
Gloria

Ok, so i went to my followup visit to my Reumatologist. Had good news and bad
news. The good news is after 2 years of ra without dmards my hands and wrists
are in pretty good shape. I dont have ra in my knees and no damage from ra in
them, i have osteo arthritis because of surgury when i was a kid. I have damage
in my feet from ra but no pain what so ever(knock on wood).
But, then he says i have to come to his office once a week for my Methetrexate
shot, and i guess he doesnt like patients who disagree. So i end up with a
prescription for Arava and Dynacin (Pharmacist said i can substitute Minocin for
Dynacin) I asked for minocin and he wrote the script for Dynacin.
For 2 weeks i have been taking Vioxx 25mg 2x, and Medrol(pred) 4mg x 2 per day
which cut the pain of my big flare. I figure to cut the pred to 4 mg and then
down to 0 and continue the vioxx and add minocin 100mg twice a day mon-wed-fri (
im still my own doctor lmao).
Now the interesting thing is i was in remission for about 4-5 months last
summer, but since my knee problem was from osteo i accually was in remmission
from ra for about 8-9 months since that was my only problem for those additional
months.
Now for those who po po the diet issue, thats all i changed for the first year
of my ra. I made gradual changes and got gradual improvement until finally it
was gone. The last thing i changed was becoming a vegetarian(cept for fish). And
recently i discovered i have a issue with wheat. The weird thing is how ra can
come and go like that. It is very disheartening. But i will stuck to my guns, i
feel it can be overcome again.
And for those who dont think diet helps,(in not saying its a cure) a rule of
thumb is it takes 1 year to reverse every 7 years of abuse. It doesnt happen
overnight. Its something you have to stick with for the long haul.
Gary
http://users.ibx.net/veggie

My brother, who has RA, has been taking Hemp Oil.......he says that he feels a
denfinate improvement in his condition. (We are taking totally different
approaches and trying an alternate is really something for him!) Has anyone
tried this? Or, even heard about it helping?
Be well, Joey

Hello everyone,
I have just started having cranial therapy and I am amazed at the effect it
has on me. I went with no expectations whatsoever and was told that I would
be able to tell after five treatments if I felt it was worth continuing.
I knew after one treatment!!!
I felt absolutely wonderful, clear headed and energetic..........well maybe
energetic is a slight exageration but it defnately lifts my energy levels
quite considerably <grin
It's difficult to say at this stage how long the effects might last as I
have a few other things going on at the moment that cloud the issue. It does
seem though that for each treatment I have the effects last longer.
IMHO.....well worth looking into .
hugs,
lisbeth

Hey, Group, This e-mail was on my Scleraderma Digest posting. I feel
too novice to really address her questions and she is not on the
one-list. Can any of you who are farther down the road then me advise
her? Thanks a bunch. Sandra
From: BMS5821@...
Sandy .- I picked up the book "The Road Back" that was mentioned in
someone's
email not too long ago and I have thoroughly enjoyed this book. I would
like
to
know if anyone has tried IV Tetracycline therapy. If you have ,I would
be
really interested to know who orders this for you -your rheumatologist
or
internist. I have SD,FM, Raynauds. The SD has left me with a pain in my
lung
upon breathing which I am getting treated with Prednisone. It has
stopped
working. Is there any
other alternative out there besides these steroids? I have gained too
much
weight that I don't recognize myself in the mirror. Help! The heavy
pain
meds
do not seem to work for me either. If anyone has tried any natural
remedies
with
some good response I am all ears. Thanks for your input and this web
site.

One reason why family is so important. Carol/Piney

I am wondering why they give mtx to rheumatics to suppress the immune
system (under attacking itself theory) and dont give it to asthmatics
with intrinsic asthma? Whats their reasoning there? Are arthritics more
expendable? They do give prednisone to severe asthmatics.
Sarah
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

Anolther angel message for us all. Carol/Piney

Just a note for California Medicare recipients. In the paper today there
is an article stating that Medicare recipients are now entitled to the same
discount prices on prescriptions as for Medi-cal recipients, beginning
today, at pharmacies that serve Medi-cal patients. This does not mean they
pay for them, just that you are entitled to the same price on prescriptions
that you, the recipients, pay for in full. I think this came out of a
recent study that showed price-gouging against seniors compared to preferred
customers like the state or hospitals and HMOs, because there was a bit
about that on the TV news last weekend. Sometimes your elected
representatives do really come through for you!
You have to show your Medicare card, and it does not apply to OTC or
compounded drugs. There is a 15 cent fee for the pharmacy, to reimburse for
making the cost inquiry. The article states more info is available from
North Bay Health Insurance Counseling and Advocacy Program (HICAP) if
needed, at (800) 303-4477. Hope this helps someone. The price differences
I saw on the news story were significant. I don't recall what some of them
were exactly, but remember seeing differences of at least $60 on some
prescriptions. Liz G

Hi, Group. First the good news. I now have a doctor here in Billings,
Montana who not only will give me the monthly IV but who was genuinely
interested in the AP. Said he had read about it in a couple of
articles and that he likes to keep on the EDGE of medicine. He is a 72
year old neurologist who does chelation. I gave him all my Road Back
literature and he wants to read SCLERADERMA and THE NEW ARTHRITIS
BREAKTHROUGH which I will take to him. Had a really rough time finding
my cleocin; however, and a pharmascist here ended up "borrowing" two
from the hospital for me. But after that, Doctor Nelson will now take
care of it. Yea! My problem is that I am being REALLY good following
the diet; however, yesterday and today, I am feeling really weak. Any
advice? Sandra

From the popular syndicated series by Joe Graedon:
http://www.healthcentral.com/peoplespharmacy/pharmfulltext.cfm?ID=26670&stor
ytype=PPherbdrug
Mark

Three yards of black fabric enshroud my computer terminal. I am
mourning the passing of an old friend by the name of Common Sense. His
obituary reads as follows:
Common Sense, a.k.a. C.S., lived a long life but died from heart
failure at the brink of the millennium. No one really knows how old he
was, his birth records were long ago entangled in miles and miles of
bureaucratic red tape.
Known affectionately to close friends as Horse Sense and Sound Thinking,
he selflessly devoted himself to a life of service in homes, schools,
hospitals and offices, helping folks get jobs done without a lot of
fanfare, whooping and hollering. Rules, regulations, and petty,
frivolous lawsuits held no power over C.S. A most reliable sage, he was
credited with cultivating the ability to know when to come in out of the
rain, the discovery that the early bird gets the worm and how to take
the bitter with the sweet. C.S. also developed sound financial
policies (don't spend more than you earn), reliable parenting strategies
(the adult is in charge, not the kid) and prudent dietary plans (offset
eggs and bacon with a little fiber and orange juice).
A veteran of the Industrial Revolution, the Great Depression, the
Technological Revolution and the Smoking Crusades, C.S. survived Sundry
cultural and educational trends including disco, the men's movement,
body piercing, whole language and new math.
C.S.'s health began declining in the late 1960s when he became infected
with the If-It-Feels-Good, Do-It virus. In the following decades his
waning strength proved no match for the ravages of overbearing federal
and state rules and regulations and an oppressive tax code. C.S. was
sapped of strength and the will to live as the Ten Commandments became
contraband, criminals received better treatment than victims and judges
stuck their noses in everything from Boy Scouts to professional baseball
and golf.
His deterioration accelerated as schools implemented zero-tolerance
policies. Reports of 6-year-old boys charged with sexual harassment for
kissing classmates, a teen suspended for taking a swig of Scope
mouthwash after lunch, girls suspended for possessing Midol and an honor
student expelled for having a table knife in her school lunch were more
than his heart could endure.
As the end neared, doctors say C.S. drifted in and out of logic but was
kept informed of developments regarding regulations of low-flow toilets,
mandatory air bags and a government plan to ban inhalers from 14 million
asthmatics due to a trace of a pollutant that may be harmful to the
environment.
Finally, upon word that a North Carolina town council was attempting to
restrict front porch furniture to lawn chairs and settees that are
aesthetically attractive, C.S. breathed his last.
Services will be at Whispering Pines Cemetery. C.S. was preceded in
death by his wife, Discretion; one daughter, Responsibility; and one
son, Reason. He is survived by two stepbrothers, Half-wit and Dimwit.
Memorial contributions may be sent to the Institute for Rational
Thought.
Farewell, Common Sense. May you rest in peace. Hopefully, in a casket
the state of North Carolina deems aesthetically attractive."
The article forgot to mention that a step-son, Morality, also
pre-deceased CS as a result of wounds inflicted by Hollywood and modern
arts (literature and lyrics).

Hello group,
For those interested in buying antibiotics overseas, I wanted to report I
have succeeded in buying Zithromax by Pfizer from a pharmacist named Zul in
Malaysia. Package arrived today, apparently sailed right through U.S.
Customs. The package contents were listed as Zithromax, so it was no secret.
I was able to purchase 60 250 mg tablets for 175 dollars, or less than three
dollars per pill. From what I have read, that is a good price.
Many thanks to Chris for hooking me up with good old Zul.
If anyone is interested in more details, let me know.
And now, I need someone to remind me what the proper dosage is for Zithromax
and Minocin. Is it Zithromax two days a week and Minocin three, or Zithromax
two days and Minocin five days.
Thanks,
Rhonda

I have had the strangest migrating pain in my neck/throat and jaw. It feels
like it is strep throat and other times feels like a toothache. Today it
feels like a stiffness in my jaw. My arm is swollen from my shoulder to my
elbow on that side. My tongue also hurts on the side and I feel like my
glands are all swollen. I have had extreme difficulty swallowing for the
last three or four days. I have RA and Sjogrens. I went to the ER on
Sunday because the pain was keeping me up all night. The very young ER Dr.
wasnt familiar with the medications I take (Enbrel, Doxycycline, Celebrex,
Salagen). He determined that I have Pharyngitis and prescribed amoxicillin
250MG 3 times a day for 7 days (Im sure he meant 10 days since there are 30
Pills). He said that my tonsils were swollen and red and there was a little
pus. I have been taking the amoxicillin since Sunday and the pain seems to
be worsening and I am little worried. I stopped the Enbrel until this
passes but I am still taking Celebrex and Salagen. I can feel the
difference without the Enbrel. I have stiff wrists, neck, elbows and knees.
Things that have been quiet for months. I have to get rid of this jaw pain
before I can restart the Enbrel. I had strep throat for 8 months before I
was diagnosed with RA. It was treated with Ceftin at that time. I had
several treatments for it on and off for the eight month period.
My questions:
What else could these symptoms be?
Am I taking enough amoxicillin (750MG daily)
Should I be on something stronger?
Any other thoughts would be appreciated.
Thanks,
JB in Germany

Contact: Marjorie Centofanti
mcentofanti@...
410-955-8725
Johns Hopkins Medical Institutions
Salmonella's molecular mimics may spark arthritis
Scientists at Johns Hopkins have uncovered an important link between
getting specific bacterial infections and developing autoimmune diseases
such as arthritis.
In a study reported in this month's edition of the journal Nature
Medicine, the researchers show clearly that immune system cells which
fight bacteria can also attack normal cells carrying a specific mimic
molecule -- one that closely resembles a bacterial protein.
Further, they show that as long as there's been a previous bacterial
infection, immune cells can attack "innocent bystander" cells -- body
cells that bacteria have never infected. This occurs when the cells are
stressed by exposure to irradiation, environmental toxins or the body's
stress chemicals.
"We've found this evidence that the immune system can be fooled," says
Mark Soloski, Ph.D, who led the research team, "and it suggests subtle
changes that could underlie many autoimmune diseases." The study also
offers a starting place for scientists to investigate environmental or
genetic triggers to autoimmune diseases.
The team focused on infections by Salmonella, bacteria well known for
food poisoning but also long thought to trigger arthritis in some
people. "As many as 10 percent of those who get Salmonella develop a
Oreactive' kind of arthritis which lasts a few weeks," says Soloski.
"But a smaller, significant number of those patients get a severe,
debilitating type of arthritis that's long-lasting."
To investigate bacteria/arthritis connections, the scientists observed
behavior of a typical bacteria-fighting immune cell, the cytotoxic
lymphocyte (CTL), as it approached infected body cells. Cells invaded by
bacteria normally give clear signals that they're infected.
"They display small pieces of bacterial proteins on their surface that
say, in effect, 'Hey, here's a sick cell,'" says Soloski. Attracted by
this protein "flag," CTLs dock with the infected cells and trigger their
rapid self-destruction.
The Hopkins scientists first identified the protein "flag" in mouse
cells infected with Salmonella as one common to certain bacteria
associated with human arthritis, including Borrelia -- the cause of Lyme
disease.
But they also found the bacterial "flag" was almost identical to parts
of a "universal housekeeping molecule" found in humans, mice and all
living organisms. This "housekeeping molecule" helps proteins keep their
shape.
When researchers artificially coaxed mouse body cells to display the
Salmonella "flag," the mouse CTLs would readily attack them. But CTLs
also went into attack mode if the cells displayed a piece of the mouse's
own housekeeping molecule or the identical human version. "This shows us
the immune cells readily respond to a molecular mimic," says Soloski.
In a normal Salmonella infection in mice, Soloski says "at least half of
the CTLs are stirred up to recognize the mouse's own protein as well as
the bacterial one. That's a huge immune response." Based on the
similarity of the set-up in humans, he adds, the response is likely the
same. Now the scientists are trying to find why and how this immune
response translates into arthritis in some mice and humans.
In a small side study, the team also found that normal, uninfected body
cells could be attacked by CTLs if the cells were stressed in some way,
such as being exposed to higher temperature or radiation or general
infection. "We don't know what's going on here," says Soloski, "but it's
a good place to study other triggers of autoimmune diseases."
###
Other researchers were lead author Wei-Feng Lo, M.D., Ph.D., Amy
DeCloux, Ph.D., Amina S. Woods, Ph.D., and Robert J. Cotter, Ph.D., of
Hopkins, as well as Eleanor S. Metcalf, Ph.D., of the Uniformed Services
University of the Health Sciences in Bethesda, Md.
The research was funded by NIH grants and by an award from the Maryland
Chapter of The Arthritis Foundation.

To everyone having difficulty sleeping, I take l/2 a
gravol (travel sickness) pill about 1/2 hour before
bedtime, and it works for me. Good luck.

I still have problems with sleeping. I wonder if any of you have
similar. Whether its FMS or what I dont know. I did sleep with the
amitriptyline but finally decided I didnt like how sluggish it made me
(if possible to be more sluggish!) and the way it changed my mental
perceptions. I do take calcium and magnesium and melatonin. What is odd
tho is that an Aleave or Tylenol seems to help me sleep better than
anything else. I have been trying to avoid nsaids as much as possible.