Auto-immune diseases

Just a note to say I'm in the process of switching providers. So if I am lost
in cyberspace don't send the Mounties looking for me.
My new address is mousepotatoes@...
(you know couch pototoes and tv.....mouse potatoes and the PC...)
Chris, my new website address is coming (you have my story linked) . My old one
will stay up and running until May 31st.
Later,
Donna
Ottawa, Canada
Scleroderma, Raynaud's 01/95, AP 10/97
(My Story) www.compmore.net/~donray

I mentioned this book once before when I first started it, but I am going to
mention it again now that I'm further along. I've never read such detail
about cell communication, all the hormones and the role of diet in
maintaining the optimum functioning of our bodies at the cellular level.
The book is THE ANTI-AGING ZONE by Dr. Barry Sears.
Linda

Very interesting, Yoly. Although I didn't have severe cystic
acne, I had inflammatory acne that continues to this day. As if
arthritis isn't enough! :) I took minocycline for a couple of
years as a teenager, and it definately helped clear up my skin.
Now I just use topical clindamycin, which works wonders. But just
recently, I was diagnosed with an adrenal gland disorder that
causes the body to make excess male hormones, which, thank God, I
am going to start taking medicine for very soon and will solve
the acne problem.
Propioni Bacterium Acnes definately plays a role in acne, for
when male hormones stimulate the oil glands excessively, the oil
mixes with the p.acnes to cause inflammatory acne. Hence why my
acne cleared up on antibiotics, but still continued to be quite
oily. But kill the bacteria..and no acne!
Interesting topic indeed.
Cheers,
Kyla

<A HREF="http://www.docguide.com/P.nsf/InterstitialOne?OpenForm&new"
here: AGA MEETING: Vioxx Causes Significantly Fewer Ulcers Than Standard
NSAIDs
</A

http://www2.umft.ro/pedbase/files/ACNEVULG.HTM
Hi Gang, Check out this site. If the Propioni Bacterium Acnes has
something to do with RA. Then it's very interesting that the drug of
choice to kill this bacteria is the Tetracycline family. Same as the AP
by DR. Brown in the "The Road Back". I had severe cystic acne as a young
adult. It hit me around 19 yrs of age I had it on my face, butt,back and
in the groin area. Lets do a census of how many people in the AP group
had acne . Take care, Yoly

Please remove me from this forum
Thank you.
Linda Camaret
Camaretls@...

In a message dated 99-05-14 01:00:47 EDT, rsmith@... writes:
<< Hi Shelia,
LUPUS, MS, ALS, and many other diseases are AUTOIMMUNE diseases!!!

Heres a womens health site and they also have a toll free number listed on it
for phone calls
http://www.4women.org/
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

A few people wrote to me about their experiences with a burning/tingling
tongue. Jean's sister Pam sent me these two sites. I found the seond one
particularly helpful--there seems to be a possible arthritis connection--and
thought I would share them with you. Thanks, Jean, for passing my request
for information to your sister.
Linda
http://www.healthcentral.com/DrDean/DeanFullTextTopics.cfm?ID=8067
http://www.newhavenadvocate.com/articles/tongue1.html

Hello to everyone on the list
I was wondering if AP is effective for ankylosing spondylitis (AS). I've
been reading everyone's posts for awhile now, but AS has not been
mentioned. I am very interested in corresponding with anyone with AS
especially those giving AP a try. Also are there any doctors in Seattle
that use AP to treat autoimmune diseases?
I look forward to your reply!
Myron

Hey all,
I was reading the Open Forum at www.arthritis.ca, the Canadian
Arthritis Society web site. There were a couple of posts from two
people with arthritis whose symptoms went away or greatly
improved whenever they had the flu or a cold.
Have any of you ever experienced this? Any idea of why such a
thing would happen?
Kyla

Article on phytochemicals and arthritis at this link under "breaking news"
www.phytolink.net

Forwarding this as I thought it made some interesting points about
anti-inflammatories and immune modulators. Liz G

Here are a couple of more progress reports I missed the first time! Let's hear
from some more of us how you are doing!

Forwarding this from my mailbox to the list with Shelley's ok as it is good news
for us all when there is a success like this! Liz G
From: SHELLEY CASSADY <CASSADSS@...
Liz, my mom started the AP 3 and 1/2 months ago and is a new person. She has
CREST scleroderma and has suffered for 24 years -- nothing helped her. Her
Gundersen Clinic doctor just saw her last week and couldn't believe her
progress. Her reflux has subsided, her calcinosis has halted (no nodules and she
had 50 three months ago) and her night blindness has been eliminated. My mom is
a new person and so excited about being able to live again after all this time.
Her hands have wrinkles in them (they have been hard and smooth for 18 years) so
I guess that's the downside (she is 75 years old). She takes 100 mg MWF and 50
mg T and TH. If she increases it, she gets dizzy. Just thought I would share
this as a progress report. She closed her hands and fingers last week for the
first time in 20 years. I can't beleive this is remission. Something is working
for her and I don't believe it is only hope. She didn't believe in the AP when
she started it because she thought it was too simple to be true. I have shared
her story with the Sclerodermasupport.com folks in hopes that it will give them
more data to work with since they seem to feel AP is generally a hoax. Her
doctor has started 3 more patients on the protocal this week becasue he knows
something is working -- he's just not sure what or how. He is the head
rheumatologist at the Gunderson Clinic in LaCrosse Wisconsin. Shelley Cassady,
Miami University, Ohio.

Hi group-
More probing questions on AP. Just recently had MCF test and had positive
titers for M. Pneumoniae and M. Hominis. Have been on Minocine (100mg x2
MWF)since December, but recently read-- through postings here--that
Zithromax is more effective against M. Pneumoniae. Is combining Mino and
Zithro a good combo for these strains? In taking all these antibotics
should I reduce the mino to 100mg MWF? And start with Zithro at 250mg Tues.
and Thurs? Also, anybody had flora problems taking antibotics 5 days a week
(I'm already taking a gut flora sup.)? Thanks for the help--Scott

Please Unsuscribe me from this forum
TIA Noemi C. Schwert
E-mail
onas@...

Just read my Congressmans Web Site and we have been hoaxed again. There is
no such tax and none pending.
Anita

Perhaps of interest to those of us who try different diets. (From Dr. Weil's
site)
TODAY'S QUESTION
Recent Q&As
Any Basis for the Blood-Type Diet?
Q. What is your opinion of the "Eating For Your Blood Type" diet that
everyone I know is talking about?
-- Diane
I think I've been asked more about diets and dieting over the years than any
other single health issue, and my answer has always been the same -- to lose
weight, eat less and exercise more. Nevertheless, with each new diet that
comes along, people hope that maybe, just maybe, this time, it'll be a diet
that works. That's why all this week, I'll be answering questions about the
most popular diets of the day. Hopefully by the end you'll be able to see
through the gimmicks and understand that weight loss is a matter of
lifestyle change, not quick fixes. Note that you can find glowing
testimonials about fad diets. My interpretation is that following any
regimen for the purpose of improving health may work because of the shift of
mental energy in the right direction.
Peter J. D'Adamo's "Eat Right for Your Type: The Individualized Diet
Solution to Staying Healthy, Living Longer & Achieving Your Ideal Weight"
(Putnam, 1997) wins the prize for creating the most buzz on the weakest of
foundations. D'Adamo is a naturopathic physician who claims his research
shows that to successfully lose weight you have to eat the way your
prehistoric ancestors did based on your blood type. For example, he writes
that if you have type O blood, you are a descendant of carnivorous hunters
who should eat a lot of meat but avoid grains and beans, and that if your
prehistoric ancestors had type A, they were vegetarian farmers.
Nonsense. In the first place, I know of no evidence that prehistoric people
ate diets that somehow were dictated by their individual blood types.
Furthermore, humans aren't the only animals with blood types, and there is
absolutely nothing in scientific literature to suggest that blood types
governed how either animals or humans ate during prehistoric times.
It's worth noting that the "studies" D'Adamo cites have been published only
by him and not in any scientific journals whatsoever. In fact, once you get
past the gimmicks and carefully evaluate D'Adamo's instructions, you'll see
ultimately that his diets are actually just low in calories. Undoubtedly, if
you take in fewer calories than usual, you'll lose weight regardless of
their source and absolutely regardless of your blood type.
Dr. Andrew Weil

Mark and group,
This may be of interest to you. I will send through a few more.
Kathryn

This may sound crazy, but has anyone used ostrich oil for RA and, if so,
what were your results? A family friend has talked to someone near where I
live who has tried it for MS and is apparently greatly improved -- from
being in a wheelchair to working in his garden. He also says it's supposed
to be beneficial for RA. All I could find on the internet was an
Australian site that claimed it has anti-inflamatory properties, providing
pain relief, and could be taken both internally and applied topically. If
anyone has tried it, how did you use it?
Thanks
Paula

http://www.mdheal.org/microbes.htm
http://www.mdheal.org/parasites.htm
http://www.mdheal.org/leakygut.htm

Hi Gang, on the web site Mark sent There is a page to find a narural
healer in any part of the U.S.
www.holisticonline.com/w_herbalmed.htm check it out,
Yoly!!

Dear Group,
A college student somehow crashed the hard drive of my ISP late Saturday
night resulting in lost mail. Ironically, the ISP had a new hard drive
ready to install that would have prevented this sort of thing.
They've traced this back to a university computer, but haven't caught
the culprit yet.
If any of you posted mail to me privately or through the group during
this time, please resend it.
Ethel

We have had a long thread going over in the APchat list about progress since
starting the AP as some of us were geting discouraged and it has been a great
inspiration to us, so we thought we should share some of it in the rheumatic
group. Our apologies to those who are doing well and have a mail overload but we
feel it is important to share this. Here are some parts of the reports snipped
and pasted together:
From: S. Clark <sasc@...
Way before RA diagnosis, my hands would be so sore I couldnt shake hands and
sometimes drove with
wheel balanced between my thumb and next finger. Now I can usually thump a
watermelon and dont have
that much pain even without nsaids. In fact lots of days almost no pain anywhere
as long as I dont
get the back aching or overdo it a lot. My balance is better too but attribute a
lot of that to the
hip replacement, but maybe it is really the RA. I dont usually have the totally
disabling stiffness
that I would get before especially in the evening after setting a bit. I think
lately the walk up to
the barn in the early morning is easier too. Im almost afraid to say anything
about being better
cause soon as I do, I get a downhill spell, LOL. I also went thru stages of
certain joints really
hurting and then getting better after starting AP. My wrists went thru really
sore couple months,
then shoulders that never hurt before, got so sore and I lost most of my
strength in them. This was
really scary but they got better slowly and now are probably back to close the
normal strength and
no soreness
From: arjay <arjay@...
You are so right now I can
open childproof pill bottles
get up from a chair and walk, not hobble away
get off my pony and walk
dig a hole in hard ground
push around a full wheelbarrel
get in and out of the bathtub
get down on the floor and up off it(this is still alittle rusty but
better).
do some yoga positions
shoot my rifle again--after all it's bear season
kind of run for little spurts
shear my sheep and trim their feet
Come to think of it I've come along way in just 5 months. It's just you
want everything you use to have, hopefully with AP we can have most of
it again.
From: Sandy Murphy <ladybug@...
I can sit down in my bathtub without nearly the pain I used to have,
I can weed in my garden using a hoe and have very little pain (that's
pretty exciting).
I can turn om my antique floor lamp (all by myself),...
I can lift 4 plates at one time with no pain.
I can take a dress off over my head.
I can clip my own finger nails.
From: KPSB2@...
Ok Here is Mine::::
I can walk around the loop several times in town without having to rest.
I can go to school and learn something every day
I can walk the dog
I can very careful squat down with help and come back up again with help
I can brush my hair without being wore out.
I am no longer incontinate
I no longer have to take asthma medicine
I can drive my car
From: "Liz G." <pioneer@...
to the dishwater from the godawful exhaustion and back pain from bending
over the sink!
and holding on to the walls and counters while walking on my heels, even
barefoot on many days!
clearly in the morning without 2 cups of coffee to kick-start the brain
cells.
wisest people on the face of mother earth! :) Liz G
From: Cooky <cooky1@...
I can:
Brush my teeth without the big handle
Turn the steering wheel---I thought my hubby tightened it to keep me out
of the malls
Sleep with only one splint
wash the floor on my hands and knees again
bring in the groceries
wear flats
wear heels for a short period of time
have my balance back
turn the knob on the bedroom lamp ( I said when i could do that with one
hand I would be happy)
clean and cook in the same day
exercise with Richard all the way thru
*******Hope you all enjoyed this and that it will be a help and inspiration to
those who need a boost. Anyone who would like to join us over on the APchat list
and discuss this or anything from politics to much needed hugs please do! This
list is just for off-topic chat and additional emotional support for rheumatic
members in need of it. Serious questions and comments on the AP and related
health topics should be directed to the main rheumatic list!******* Liz G

Hi gang, heres more info from the natural healer. This is for my body=
I'm 5'4 weigh 105 lbs. I have sever AS and sever colon problems. Please
get your own evaluation. I don't want anyone to get sick from my
formulas.
Vitamin E by Solgar, made from d-alpha tocopherols ( a few mcg of
silemiun with it helps absorbe E better) I take 400 iu at dinner
Bromelain- by twinlab, 1,000 mg one at breakfast and dinner and
one at bedtime
Garlic Age cold processed Kyolic reserve by Wakunaga of america
-600mg at breakfast and dinner
Vitamin C- by solgar, asorbic acid 500 mg at breakfast and dinner(
for every bit of asorbic acid you take you loose equal amounts of
calcium, she said to supply the rest of your C from asorBATE not asorBIC
acid , asorbATE is in rose hips etc.)
Boron- by solgar 6mg at dinner
Potassium by solgar-two tablets of 99mg at dinner
Cod liver oil, orange flavor emusified by twinlab ,two tablespoons
at dinner YUMMY!! chase with a mouthful of food right away!
Sea Kelp- by solgar 225 mg two at dinner
Olive leaf extract- by solaray , haven't recieved my order from
east park yet,250 mg with 17 percent oleuropein one at breakfast and two
at dinner
Parazyme by renew life- a combo of emzymes for proper food
digestion one before each meal
Opti-Cal- by twinlab calcium carbo waffers (delicious) three after
dinner for dessert = 1,500 mg of calcium with 750 magnesium,300iu of
vitamin D-3
B-12- by twinlab, sublingual dots 500mcg at breakfast and dinner
Citrus Seed extract- by nutri cology from grapefruit seed,75mg one
at breakfast and dinner
Acidophols/biffus- from the pharamacy it's behind the counter in
the fridge ask pharmacist for it you need no RX , brand name LACTINEX
I chew 4 tablets four times a day
Liquid Chlorophyll by natures sunshine-1/3 of a cup a day divided
in two servings of my water mixture
Drink half your body weight in water, drink only water that has
been boiled for 10 min." As incredilbe as it may seem, water is quite
possibly the single most important catalyst in losing weight and keeping
it off. Although most of us take it for granted, water may be the only
true "Magic Potion" for permanent weight loss."
Take your pills with water 15 min before a meal DO NOT DRINK
anything at all while eating it will decress your stomach acid causing
you to not digest and absorb nutrients properly, wait 1 hr after a meal
to drink water.
My water is a huge glass of water ,aloe ,chloryphil, stomach formula
of aloe, pepperment ,slippery elm and masrhmellow.I put a splash of OJ
to give alittle taste.
NO BLACK PEPPER -it's very hard on the kidneys
Yeast infections- NO friut of fruit juices at ALL .After you get the
yeast under control you can add Apple and pears ONLY
No Meats -at all only fish, no shellfish
Pork- NEVER!!!! in any form ,it has parasites that never die even
after fully cooking
Advil, ultram, flexerle, tylenole as needed . Got off AP for a
while after 4 months just couldn't handle the massive yeast problem I
had. Getting that under control now. will start again in a few months.
Although I feel the Olive leaf is working GREAT for me. May not go back
, I will see.
Theres still so much more, does anyone have a fax # I can
send all the pamplets she gave me , then you can scan and send to the
group. I don't have a scaner. To much to type. Let me know.
Well I've got to take a break my butt hurts from sitting
so long ( my hubby says WHAT BUTT!!! LOL ) Hugs Yoly (yolanda)!!

http://www.nutramed.com/digestion/gastroint.htm

I have received a call from Antoinette Paterna (973-785 4539) who lives in
NJ. She does not have a computer but she had found our group while using the
internet at her local library and contacted Janine Osberg.
Antoinette sees Dr Whitman in NJ and is using both Minocin (100 mgs in am)
and Doxicyclene (100 mgs in pm) daily for her RA. She was also using
Relafen and she had to take this at noon. It seems that Dr Whitman does not
include in his protocol supplements, but she takes an antioxidant and MSM
which she showed to him and he told her she should continue taking them.
She recently went to see him and he was not happy with her progress and
changed the relafen to Celebrex and said that if this did not help she would
be changed to Embrel.
She is very concerned about taking Celebrex, because she just received a
letter from the Dr's office saying that it recently came to his attention
that Celebrex can occasionally cause gastrointestinal problems and internal
bleeding. She says she certainly would rather not take the risk, but is
looking for information from our group on this.
She is also very concerned about changing to Embrel because she says the cost
would be $1000 a month and she cannot afford this.
I told her that I would pass this information to the group and you can either
send your messages to me or call her directly. I told Antoinette that I
would call her back on Thursday and read her your responses
Just my question: if Minocin and doxy are not working as well, shouldn't she
be using one of those two with Zithromax or one of the others on a pulse
basis?
Thanks to all.

Good herbal medicine site: http://www.holisticonline.com/w_herbalmed.htm
Mark

Hey folks= remember, tomorrow is National Arthritis Day! Want to watch a
hip replacement surgery "live"? Check out
http://www.ahn.com/liveevents/hip/default.asp. (Probably not for the
squeamish)
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html

Anyone living up in the East might be interested in this gathering.
http://www.highlandlakeresort.com/RAunion99.html
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html

Ok,
I'm back from Maui.....got the kids on the bus and now I'm going back to bed to
make up for the 6 hour turn around and two days of flying? Or was it the late
nights and over indulging?? Naaaaaa.
Talk to you when I come to.
xoxox
Missed ya all.
Donna

I was wondering what antibiotics are most effective at treating
staph and strep infections?
Thanks,
Kyla

Does early infection with the measles virus increase the risk for subsequent
development of inflammatory bowel disease (IBD)?

I am feeling lately that I have bogged down in my progress. I have been on the
tetracycline a little over a year now with some great results but am getting a
little alarmed at the tendon damage and the fact that my toes especially and
some of my finger joints are going atilt. I am off all nsaids now as they only
semed to make the pain and swelling worse, except for taking an aspirin with the
tetracycline on days the swelling seems worse. A knuckle in my hand blew up
really badly a few days ago and my doc has me on a pred burst right now which is
slowly bringing it down. The only anti-inflammatories I am using regularly are
fish oil and GLA supplements.
I am going to talk to my doctor when the round of pred is over about adding
another oral antibiotic as I don't think I can get him to do the IV's now and
the logistics of child care and costs of the treatment are difficult for me to
work out. What would be the recommended next oral antibiotic of choice? I
couldn't take the minocin because it had an extreme effect on my hearing. Would
clindamycin, doxycycline or erythromycin be the prefferred one, or should I try
to get something like zithromax? Any suggestions as to what to do about
anti-inflammatories? Cost factors are not an absolute barrier but would be a
concern as I have no insurance and little income right now. Thanks for any
advice you could offer me! Liz G

Liz and Gang, I went to a Certified Natural health Professional
yesterday.I highly recommend it to everyone. It was the best 45.00 I've
ever spent. I was worried about taking so many supplements. I wrote down
everything I'm taking and all was fine She told me how much to take for
my body weight and degree of illness. . She did add Chlorophyl ( to
clean the blood)and a capsule with a combination of emzimes( to help
digest foods properly). She said that Olive leaf was the best thing on
my list. She thinks it's wonderful. I use a "stomach formula" of
concentrated aloe, marshmallow, slippery elm,and peppermint. She said
the slippery elm was a must for the GUT. There's so much to learn from
someone like her. There's certain foods that you should not eat with
others . Also foods to avoid,eating certain foods at certain times of
the day,for example- always eat any type of melon alone:never combine it
with other foods.There's just so much , you must do it .I found mine in
the phone book.It gives me peace of mind to know exactly how much to
take , instead of guessing. Take care, Yoly

Hi, I was wondering if anyone who has any suggestions or recommendations about
dosage on slippery elm for gut healing. I have a big bag of it I bought for my
kids when they had stomach flus and though I might as well use it up. Since it
coats the lining of the digestive tract, would it interfere with absorption of
anything? Any tips would be appreciated.
Also, I had a thought on olive leaf extract. Since it is a strong
anti-microbial, I always take my acidopholous about two hours after it as I'm
not sure if it might have the same effect on gut flora as the antibiotics. I
don't know if it does or not, just figure it couldn't hurt. Liz G

I thought some of you might be interested in seeing this. I just got one of
those inexpensive on-the-faucet type water filters for only about $15 and it
made a dramatic difference in the chlorine smell and taste. I find it is
much easier to get myself to drink the daily recommended water intake
because it tastes so much better. Liz G

Amen! http://www.cnn.com/HEALTH/cancer/9905/15/cancer.reut/
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html

Dear group,
I found this treatise on rheumatic disease by Dr. Zoltan P. Rona and I've
put a link to it on our web page. This is a very good and concise
overview of many aspects of treatment, including good information
about looking after the gut, which is of paramount importance in treating
these diseases. I suggest reading this article carefully would explain
aspects of the therapy that many you are interested in.
Chris.

To get a virus from a zip file, you would have to download it, unzip it and
execute the exe file
within it.
http://www.av.ibm.com/BreakingNews/HypeAlert/Returned/
--
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

A while back someone was asking about yeast meds--natural. I found this
a long time ago--hope it still works
http://www.mall-net.com/mcs/afung.htm
cooky

Soma.com ( www.soma.com), the Internet's first complete pharmacy, helps
arthritis patients better
manage their condition by offering
24-hour, seven-day-a-week access to pharmacists via e-mail and a toll free
number (1-888-700-SOMA).
Soma.com's online
pharmacists offer advice for immediate pain relief as well as recommend products
that may help
manage arthritis pain in the future.
Soma.com fills prescriptions for pain medications and, in many cases, can
deliver the medicine to
the patient within 24 hours. In
addition, Soma.com's health database provides comprehensive health care
information, including tips
for coping with arthritis.
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

http://library.northernlight.com/FD19990513240000075.html?cb=0&dx=1006&sc=0#doc
--
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

http://library.northernlight.com/ED19990512760000042.html?cb=0&dx=1006&sc=0#doc
--
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 was doing a little reading up on various forms of arthritis,
and came across a couple called "gonococcal arthritis". It talks
about the sexually transmitted disease gonorrhea and how when
left untreated, can cause arthritis in a single joint or various
joints and rashes.
Perhaps this form of arthritis is well known on this list. But I
thought it was interesting and figured it couldn't hurt to pass
it along. :)
http://www.healthanswers.com/adam/top/view.asp?filename=000453.ht
m
Cheers,
Kyla
I am not a vegetarian because I love animals.
I am a vegetarian because I hate plants.
--A. Whitney Brown

Here's the correct link :)
http://www.healthanswers.com/adam/top/view.asp?filename=000453.ht
m

I have bought some Olive Leaf by Herbs of Light. It is liquid and contains
Wildcrafted leaf of Olive (Olca suropaeca), 60%grain spirits and distilled
energized water. The directions are 20-30 drops in water 3 times a day
before meals, 6 days on and 1 day off.
Does this sound like a good source of Olive Leaf? My stomach tolerates
liquid forms of supplements much better. I don't see a % of Olive Leaf
anywhere on the bottle.
Thanks to all,
Carol*

Hello all,
This past Thurs. my 24 y/o son was hospitalized for esophageal ulcers
(EU), and possibly thrush. Still waiting on the biopsies/test results
to determine what caused them. He is not on an AP.
I had hoped an antibiotic would be appropriate, knowing H. pylori
causes many of the stomach and duodenal ulcers. However, it seems that
bacteria is not usually related to EU.
What I learned, while looking for an antibiotic that might help him,
shocked me. Tetracyclines/macrolides... are known to cause EU --
minocycline, doxycycline, and clindamycin to name a few. *Preventing*
drug-induced EU is simple:
Never take them within one-hour of bedtime.
Always take them in an upright position.
Always drink LOTS of water when taking them.
I reviewed over 100 pubmed abstracts on this subject, and it amazed me
that the warnings/relationship are still being written up almost 30-yrs
after it was first recognized. It appears the problem is directly
related to the antibiotics "sticking" to the lining of the esophagus,
which causes ulcers. Also read that capsules are 22-times more likely
to "stick" than tablets.
I'm sure many of you already know this, but since I'm a newbie still
learning about AP thought this post might be helpful to others like
myself. Also, posted this because Marie in Maine listed Prilosec (rx
for duodenal or gastric ulcer, GERD, or esophagitis) as one of her
meds.
Starla
(Hazel's daughter)

Hi everyone :)))
I saw on the evening news last night a segment on how germs can cause all
sorts of things now they think. (DUH!) Things like, some cancers, mental
illness like Skitzophrenia (SP!), heart disease. It said that where they
thought all of this kind of stuff was in the genes and hereditary, they are
now finding out it is not. But you know what? RA or none of the auto-immune
diseases were mentioned.
I think it was on Tom Brokow. Any one else hear it better than I did? I
was cooking dinner and dont know if I missed anything or not.
Hope everyone is having a good day.
HUGS:)
Carol Scott

Hi Ethel and everyone else,
I have found a supplier of Olive Leaf Extract and they say it is a 2000 mg
tablet containing standardised Oleuropein to a maximum or 23% but so far they
can't tell me the minimum content however, they said if I gave you the following
it may help for you to work out the dose for me:
Olea europaea (Olive tree) leaf approx 2 g
standardised equiv Oleuropein 56.7 - 76.7 mg
They also said that they had been promoting Pau D'arco 500 mg tablets for Yeast
and that they hadn't heard of the Olvie Leaf extract specifically for yeast!
Your opinion would be appreciated
Thanks
Julie ra Jan 97 ap May 98
Townsville Australia
jamulder@...

<A HREF="http://www.ciac.org/ciac/CIACHoaxes.html"
Hoaxes
</A
http://www.ciac.org/ciac/CIACHoaxes.html

Major Bacteria Breakthrough at UCSB
Dateline 05/10/99
Researchers at the University of California in Santa Barbara (UCSB) have
discovered the key to how bacteria causes infection in the organisms it
attacks. Full details of the research were published in the May 7th, 1999
issue of Science.
During a five-year study, they found that certain genes within a bacteria
only become active at the start of infection within an animal. When the
bacteria is studied all alone in a petri dish, however, the genes are not
functioning. According to Dr. Michael J. Mahan, a professor at UCSB and head
of the study, "Bacterial pathogens act like a Trojan horse -- they hide their
weapons until they are within an animal."
The key to the infection process is a gene called DAM. Using the salmonella
bacteria (known to cause food poisoning), the researchers found that the DAM
gene produced a protein that activated other genes, causing the infection
process to begin.
There are about 2,500 different strains of salmonella, which can cause
various diseases, such as food poisoning and typhoid fever. Under-cooked eggs
and poultry are a common source of food poisoning. Experts estimate about 4
million Americans are affected each year.
By removing or making the DAM gene inactive, the UCSB researchers were able
to prevent the infection process, after the bacteria was injected into a test
animal. In fact, even when injected with a salmonella dose that is 10,000
times more powerful than necessary to kill a mouse, none of the animals
tested developed disease.
According to Mahan, "We've uncovered a genetic master switch that controls
bacterial infection. When we knock out this switch, the bacterium is
completely disabled in its ability to cause disease."
Provided they can identify a chemical that can block the DAM gene's activity,
Mahan believes it could be possible to develop an antibiotic that could stop
bacteria from further infecting a living organism.
Related Links:
Breakthrough on Microbial Disease Published in Science
UCSB News Release
Researchers Find Gene that Switches on Infection from Bacteria
CNN Interactive
An Essential Role for DNA Adenine Methylation in Bacterial Virulence
May 7, 1999 issue of Science magazine. (Subscription required.)

<A HREF="http://kumite.com/myths/"
</A
http://kumite.com/myths/

I've been on AP for 7 months now and have reduced my
Prednisone to 7mgs.from 10mgs. All was going fine until
about 3 weeks ago when my Achilies tendons became very
painful. I'vexwalked with a limp for several weeks due to
the pain. This week my shoulder joints have gotten very
painful also. Tylenol doesn't do much good. I increased
the Pred to 8 mgs yesterday and today but I don't feel any
pain relief. I haven't felt this bad in a long long time!
Usually herxs make me very tired but my energy level is
still very good these past weeks. So I don't think this is
a herx unless it's one without the usual drop in energy. I
don't know what to do. Especially I don't know what to do
about the Pred. I'm tempted to go to 10mgs but it took so
long to get down to 7mgs I hate to go back up. Also, it use
to be that I was stiff in the a.m. and by about 1:00 p.m. I
was a lot better. Then by evening I was in pretty good
shape. Over the past 3 weeks I don't improve as the day
goes on. Even the swelling in my hands doesn't go down like
it use to. Can any of you shed any light on what's going on
with me and any advice about the Pred? I'm getting very
discouraged!!!

HI DEANNA, i FEEL MUCH BETTER TODAY, THESE dr< ARE SMART, THEY KNEW JUST WHAT
TO GAVE ME i WAS SIC FOR A WEEK. BUT DOING BETTER, GOING SWIMING THEN INTO
COLD AIR WAS A NO NO. WELL A LOT OF PEOPLE OUT THERE MADE ME FEEL BETTER.
NEVER KNEW SO MANY CARE, GEE IF YOU ALL NEED SOMETALK TO OR CHAT, JUST WRITE
OK THANKS NOE, DEANNA, THAT NAME IS BEAUTIFUL. im 60 YEARS OLD, i HAVE
THREE DEASES HAVE RAUNARDS, SCL. RUM. i HAD IT FOR 5 YEARS, WHY SO LATE
??//// WHAT ARE YOU TAKING FOR MED. IAM ON PROCARDIA CURPRIME,pRILOSEC,
ZOLF FOR NERVES ARE THEY GOOD. i AM HAPPY GO LUCKY EXCEPT MY BENT FINGERS
THATS MY WORST PROBLEM, HALF BENT. ANYONE KNOW WHAT TO DO FOR BENT FINGERS.
i AM VERY ILL iAM TURNING TO STONE. THEN MY ORGANS WILL SHUT DOWN, WHEN HOW
WHERE GOD ONLY KNOWS. HE IS WITH ME i PRAY ALL THE TIME, BUT THIS LADY HAD IT
SO SO BAD, HUSBAND, HAD TO GRAIN HER FOOD AND FEED HER, SHE CAME OUT OF IT.
she gOT OFF DIARY PROCUTS MILK ECT, GOT INTO HERBS. SHE IS NOW WORKING IT
TOOK HER YEARS, SHE NOW 40 WELL ITS COLD HERE, GOT TO TURN HEAT, WHAT DO
YOU TAKE. MARIE THANKS TO ALL

I have started taking something called Moducare Sterinol which says it is
Sterinols from soy and Sterolins from pine. It was recommended by someone
at the Health food store for regulating the immune system. It has worked
really well for me when I have joint pain and swelling. I have lupus and
have been pretty stable but in last few weeks I have been having pain in my
fingers, wrists and shoulders and after two days of taking 2-3 of these a
day my swelling and pain disappears. It is made by Natural Balance in
Castle Rock Colorado. I have not been taking any other NSAIDS so I think
that is what is helping.
Has anyone heard of it or tried it? I would be interested to know if
anyone else has had good results.
Liz H.

You sure sound like me Liz. I'm in the same boat and like you am considering
prednisone. Maybe just a short course of it (like a week) will beat the flaring
into remission for a while and give the minocycline a chance to do its job
better. Most docs, including Dr. Brown, gave Prednisone or will give it for a
short period anyway. I know I used prednisone in college once to knock out mono,
which it did in just 1 day. I took a 4 day course of it and then quit and the
mono didn't come back. Like you, taking prednisone long term, even in low
dosages is a scary thought. Have you thought of taking something like Zithromax
or Biaxin? I think if I had a choice, I would introduce that into the equation
next.
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html

Thanks Kathryn, ill check it out and put up some links to it. Im sorry for poor
Katherine. Life is
so damned unfair, excuse my French!
I would still like to do a section for the group site listing all the different
symtoms that we have
with our diseases. If people would like to send me emails listing their disease
and all the symtoms
and other weird things they have I will start compiling it.
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

Of note to those of you who have lupus:
http://healthyideas.com/healing/oncall/lupus.html
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html

Here's an interesting link with even a mention of minocycline (modest
benefit):
http://drkoop.com/centers/Arthritis/page_24_118.asp
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html

If anyone is interested I started about a week ago taking 5HTP which is
sort of tryptophan. It is also Seratonin. I took it to loose weight but
found I ate more then I noticed how well I was sleeping..not getting up
tired. I still have my hourly hot flashes but I still wake up like I
slept well. I started taking it 50 mgms 3times a day and another 50 at
night. Even tried up to 100 3 times a day. But what I find the best for
sleep is 100 mgms 1/2 to 1 hr before bedtime.I'm working on a natural
diet aid!!! I think I foung it...more later...no Ma Haung!!!
cooky

Here are some links I found on costochondritis, I thought it was interesting in
the one that it said it could be caused by an infection:
www.rxmed.com/illnesses/costochondritis.html
www.emedicine.com/emerg/topic116.htm
www.mediconsult.com/arthritis/shareware/arthrheum/30.html
and one on fibro that mentions it:
http://members.tripod.com/~ms_stix/fibro.htm

I posted last week about a burning/tingling sensation in my tongue.
Yesterday, when I was at my GP's office, I asked about it. He said a lack
of vitamin B6 or zinc can cause it. Just thought I would pass this along.
Linda

Abstract: 1437
November 11, 1998
Poster Session E: RA Clinical Aspects: Etiopathogenesis and Genetics
8:00-9:30 am, Hall B1/C
BREAKDOWN OF THE VAGINAL ECOSYSTEM IN PATIENTS WITH RHEUMATOID ARTHRITIS
Seung Cheol Shim, Tae-Hwan Kim, Jae-Bum Jun, Sung Soo Jung, In
Hong Lee, Sang Cheol Bae, Jung Hye Hwang1, Young Jin Moon1, Soo
Hyun Cho1, Tae Yeal Choi2, Dae Hyun Yoo, Seong Yoon Kim
The Hospital for Rheumatic Diseases, Department of Internal Medicine;
1Department of Gynecology; 2Department of Clinical Pathology, Hanyang
University College of Medicine, Seoul 133-792, Korea
Introduction: Infectious etiology has been continuously discussed in
rheumatoid arthritis (RA), and many bacteria and virus have been
considered. Normal vaginal flora is dominated by lactobacilli which
decrease the vaginal pH through production of acidic products so that
infectious disease by other pathogenic organisms could be prevented.
Also, vaginal pH generally becomes more acidic in pregnancy.
In the respect of common mucosal immunity, primed lymphocytes are
circulating into intestinal lymphoid organ, genitourinary organ and
joints.
Aims: To evaluate the vaginal environment of the patients with RA.
Methods: Vaginal specimens were obtained from 80 patients with RA and 80
control subjects. We examined the vaginal pH, clue cell and conducted
amine test, Gram stain, and vaginal culture. We interpreted the results
of Gram stain with scoring system for vaginal smear by Nugent.
Results: In postmenopausal group, the average vaginal pH was higher in
RA (6.56) than in control group (5.76, p = 0.051). The average of Gram
stain score was also higher in RA (4.65) compared with control group
(1.23, p < 0.01). The same results were shown in premenopausal groups
(vaginal pH, 6.02 and 4.51, p < 0.01, and Gram stain score, 4.50 and
0.72, p < 0.001, respectively).
There was insignificant correlation between the dose of steroid and
vaginal pH (r = 0.19, p = 0.37) or Gram stain score (r = 0.15, p =
0.539).
Conclusion: These results showed that the balance of the vaginal
ecosystem was broken in the patients with RA, and it might be one of the
etiologic factors or the aggravating factors in RA.
Disclosure: work reported in this abstract was supported by:
Hanyang University.

Hi,guess its time to write, iam on tussionex cought med. plus codean iam
half sleep' smz/tmp8oo.i60 I got this bad cought, in my chest plus spiting,

Ethel,
I see Dr. Trentham for RA, and he has me on that same dosage of Minocin.
I've only been on Minocin since mid-December of '98, and I've improved
incredibly, so I guess I can't complain about the remaining difficulty.
However, I still have a bit of trouble overall and one foot in particular
has been flared for many weeks now and doesn't seem to be improving. I have
been worrying lately that taking the Minocin according to the method
prescribed by the docs who've done the recent studies rather than the way
Dr. Brown did it for years might be a mistake, and that I will be stuck at
this point if I don't start pulsing the drug. I know you can't give
specific medical advice, but, if you don't mind, I would love to hear you
expound on the subject of different dosages. I also wonder why these
research docs haven't done any studies in line with Dr. Brown's method. Do
you suppose it's simply that they can't get funding to do a study in that
way or do they not understand? Is there a limit to how much patients can be
helped if they take Minocin daily, and how often do people get well taking
only Minocin without adding in other drugs? Any thoughts you care to share
will be greatly appreciated.
Thanks,
Kari

Hi group, I have felt lately that I am doing really well, no problems walking as
a year ago, unless I drastically overdo it, some swelling and stiffness in my
hands and toes, almost back to normal on fatigue and sleep disturbance. Off
nsaids for the most part (except for an occasional aspirin with my tetracycline
when the swelling is worse) due to problems with many of them, and pretty good
success with supplements for pain and inflammation control. Until a couple of
days ago when one of my hand joints blew up overnight, swollen more than ever
before and nearly unable to bend the finger at all! After discussing with my
doctor the problems I have had with nsaids before, we decided to go with a
prednisone burst for a week. Now I find after being on the prednisone for a
day, all the pain and stiffness in my joints that I was tuning out mentally is
very obvious because of it's absence. I had no idea how bad it was until it was
gone! I feel like I may have been settling for too little relief now that the
pred is making me feel "normal" again. I don't know exactly how to feel about
this or to proceed from here. I have little erosion on x-rays so far but several
of my fingers and toes are going awry and have gotten very slowly worse over the
last year. I have pain and stiffness in all my finger and toe joints and
cervical joints, lately I think I am getting it in my TMJ as well but not sure
if it in the joint or surrounding tissue. I also have low back pain from time to
time and some numbness in arms and legs if sitting or standing too long. I keep
thinking I should push for another antibiotic. I am on tetracycline now for
about 16 months and couldn't take minocin due to extreme hearing side effects.
My doc is giving me the tetra because of it's anti-inflammatory and collagenase
inhibitory effects, though I am still working on converting him to the infective
theory. I think I will get him to try the IV's in the long run as he is pretty
open-minded, but I don't want to rock the boat too much right now as he may be
inclined to go with a conventional dmard instead--I will keep on him-<LOL
taking references in every time I go to see him! I don't know if I can afford
more treatments anyway right now as I am without insurance. I am planning on
trying the peroxide baths as soon as I can remember to buy the stuff <LOL
am following the diet in some ways but have not totally eliminated wheat and
dairy and nightshades as previous elimination diets showed no improvement and
allergy tests showed no allergies. I am gradually cutting back on the wheat
though to prevent candidaisis and take little sugar. Here are all the meds and
supplements I am taking: Tetracycline 250mg 2 x day every other day. Olive leaf
extract 2 caps a day. Acidopholous 2 hours after the tetracycline or olive
leaf--2 caps of 2.9 billion potency. Brewers yeast, Fish Oil, Cod liver oil,
GLA, Vit C 3g/day, Vit E 800iu mixed toc. once a day, Tumeric one cap/day,
Bromelian 3x day during flares. Calcium/vit D daily timed not to interfere with
the tetracycline. Lots of ginger and anti-oxidant herbs in food and teas. Lots
of water. Replacement estrogen and progesterone for peri-men. symptoms and birth
control, and to see if it will improve my RA as my worst swelling is during the
few days PMS time. Diet mostly vegetables and some fruits, lots of brown rice
and some other whole grains, lots of fish, some dairy, very light on meat, fat
and sugars, few trans-fats, mostly olive oil and a very little butter.
I feel like maybe I have compromised the quality of my life right now too
much, it is such a relief to feel no pain and stiffness in my joints! I can get
my work done in half the time, and it is a joy to be able to do my mothering
jobs and housework without pain in my hands. I am pretty sure at this point that
I don't want to go back on any nsaids due to little relief, and a worsening of
symptoms in the long run, as well as other side effects such as gastric trouble
and bad tinnitus. I am convinced that in the long run they only worsen the
disease. I also don't think I want to ask my doc about a low dose continuous
pred either because of the same concerns, as well as the enormous damage long
term higher dose use did to my mom who took it for asthma. So I don't know what
to do--Aaaarrgh!! I'd like to hear from some of you how you handle this
decision--how much dealing with the devil in terms of potential drug side
effects is worth it for a real improvement in quality of life right now? Any
suggestions or advice would be most appreciated! Sincerely, Liz G

Long before I had my present ailments, a physician recomended lysine for
canker, cold sores. It has helped immensely.
Pat K.

See-ya!
Jeannie
\\\\|////
( o o )
--oO0o------U------oO0o---

Thank you all for the suggestions on how to clear up the nasty
canker sores I have been getting. I've been given so many
suggestions! Going to try them all a try and hopefully banish
these sores for good. :)
Thanks again,
Kyla
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
Believe your beliefs and doubt your doubts
- F. F. Bosworth
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

Has anyone in the group been treated by Dr Trentham for scleroderma? Does he
use only minocyclin, or does he use other antibiotics also? Any info would be
appreciated.
Thanks,
Melanie.

<<There was caution put out on the news, this evening re: the
above-captioned.
Anyone with a pre-existing infection should exercise great caution. Since
its approval, there have been 30 worsening infections and six deaths....
be careful!
A friend just sent me this. Anyone know any more about this?
Denise

Hi:
My name is Terri, I am a 34 year old female diagnosed for the last six years
with Uticaria Vasculitus. I am hoping to find someone in this group that has
the same or similar syptoms and how they are treated. I have never come across
anyone with uticaria vasculitus...very frustrating!
thanks,
Terri

I have just been given some really shocking news. In December 1998, I
had my lab work done at my GP's office. Never heard anything from them
regarding my results so I call twice and requested a copy. I never
received one. Then Monday I had to go for lab work prior to my yearly
physical and they called me yesterday and told me that my triglycerides
were almost 600 and that in December they were 469, my cholesterol is
high too but nothing like the triglycerides.
I was so upset that they never informed me about the December results
and the also they acted like I'm just sitting here stuffing my face with
donuts, cookies, cakes and candy, which I do not do. I have eaten
better since I've been on the AP than ever before in my life. They said
they couldn't give me any meds for my trig/col because my liver enzymes
are out of line again.
I'm scared to death. I looked it up on the net and it said that when
your triglycerides were high, there were little deposits of fat in your
blood and that this makes the blood sluggish and causes your heart to
work harder to pump the blood, which leads to a heart condition or heart
attack.
I have to think that there is something else going on, rather than just
what I eat. My husband and I eat out a lot, but mostly a salad,
chicken/steak and plain potato. No bread, no desert. I eat a lot of
fruit.
Does anyone else have problems with triglycerides? I suppose I need to
go on a water diet and suck on a toothpick (being from the south and
all). I suppose it's just one more problem us RA's have to endure.
Judy in SC
RA 42 yrs, Fibro 17 yrs, AP 2 years

Some time ago I mentioned a dear friend of mine who is very ill with Lupusx15
years.Last Dec she started AP with Doxycycline-gradually building up to a
dose of 100 mgm MWF.She handled that well.Then in March of this year she
added Clindamycin 1200 mgm once a week.Since doing that she has experienced
a Lupus flare to the point of being short of breath.This has been going on
for two months now. She finally increased her Prednisone from 5mgm to 7.5
mgm.Would it also be a good idea for her to decrease her Clindamycin -say to
600 mgm for awhile. Is it possible to herx on Clindamycin?? I would
appreciate hearing form anyone but particularly those with Lupus.Have you
experienced similar things??Thank-you.
Hugs,
Lin

So, as if arthritis wouldn't be bad enough, blood tests came back today
which say I have hepatitis c!
So could that be causing the arthritis symptoms? Would I still be able
to use the AP?
This is so much worse, I don't even know what to think. Apparently the
protocol for hep c is large subcutaneous doses of interferon for 6
months or more - usually more.
Anyone else in the group have hep c?
let me know what to expect - I can't get in to the doctor till June!
valerie

http://clinicalstudies.info.nih.gov/detail/A_95-AR-0012.html
I think this is the NIH study Ethel was talking about a few months ago.
I don't know if it's related to the Duke study or not, but it deals with
a short course of IV doxy, 14 consecutive days. I find the most
frustrating thing about this study is the complete failure to look at
existing research and treaments before designing the tests. It's almost
like the study was engineered to fail. Come on! 14 days?!
I just can't wait until my doctor decides to stop writing the mino
scripts based on a BS study like this one....
j.

Hello all,
I was wondering if any of you have a problem with frequent canker
sores in the mouth? I have always been prone to getting them, but
have been getting quite a few in the past few weeks. Usually on
the side of the tongue or lower gums. Perhaps it is stress
induced, as I have been going through a difficult time
emotionally right now. My tongue always has a whitish look to it
and at times it feels like my tongue is sore and swollen. Isn't
that odd?
I've started to force myself to drink 8 glasses of spring water a
day, as I have a very poor thirst mechanism, and would go all day
without drinking anything but a couple cups of coffee. I have
been feeling a little bit better since doing this. My
eyes used to feel so dry and sticky all the time, and since
drinking more water, they are pretty much normal again.
Unfortunately, the extra water intake doesn't seem to be helping
with the canker sores and although my mouth is never completely
dry, it is always pasty feeling.
Anyone else have this problem?
Thanks,
Kyla

Hello, everyone. Those of you who were as disgruntled as I was at the
"findings" of the doxycycline IV study done recently at Duke University,
Durham, NC, USA may be interested in this bit of information. -
I've just learned that the federal (NIH) Office for Protection from Research
Risks has suspended all clinical research at Duke University. They are not
allowed to enroll new participants and research already underway is limited.
The main reasons cited were Duke's failure to adequately inform participants
of possible risks and lack of adequate follow-up. Duke was warned in
December, '98 that they needed to begin following a proper protocol, but
have not corrected the situation. Of course, this is a "temporary"
suspension, but noone has any idea how long it will take Duke to get their
act together. Duke has one of the largest academic/clinical research
programs in the country.
If you're interested in more detail, here's a link to an article in today's
News & Observer (Raleigh, NC):
http://www.nando.net/healthscience/story/0,1080,47888-77228-552275-0,00.html
Blessings,
Linda C.
scleroderma (MCTD) 10 yrs., AP 11 months

Hello all! Maria here. Some of you have been asking, so I thought I'd write
to the group and let you know how my visit went with Dr. Mercola. I live in
Michigan, and drive to Chicago once ever 3 months or so to go see him, and
have done it now 3 times. The first time he screamed and yelled at me (OK,
maybe not literally, but almost!) because I was on all these bad meds
(Prednisone and Methotrexate) and at very high doses and I was a mess (as if
Dermatomyositis isn't enough, right?). So he slammed me into the diet, threw
supplements at me, and scared me straight. The next time I saw him I was
back up on steroids because I had cut back way too fast and was almost an
invalid. Needles to say, he wasn't happy, but he was tolerant. I thought
him a little "harsh" (gee, I wonder why). Now I realize it's just because he
really gets mad to see someone so ill. This time, now that I'm doing better,
he was SO happy to see me, gave me a good "lashing" because I admitted I'm
not following the diet, and gave me a hug good bye. I told him I wasn't
following the diet because I was feeling decent, so I didn't feel a need for
it even though I know better. He said "OK, this is a confession, say five
"Our Fathers" and five "Hail Mary's" and get back on the diet! He said
something that struck me as quite powerful. He said "your body can heal
itself, IT CAN. You just have to help it along. These medicines are no
miracle drug (as he pointed to the prescription of Minocycline and Oral
Clindamycin), they've been around a long time. They just help out, like the
diet. So stick to it". It's true, our bodies can heal themselves. They
were made to be healthy, and they will get there, we just have to help them
along. So why is it so hard to follow the diet when I know it's so good for
me??? Dr. Mercola's answer -- I'm an addict. There's nothing wrong with
being an addict to foods, you just have to learn to control it. He also said
that prayer is a very powerful tool. So, time to get back on track for me!
I demand to be healthy, and I know my body wants it too, we just have to work
at it together! I forgot to show him my "purplish" legs, so I'm sure he
still believes he has no patients with that side effect from the Minocin
because he's never seen it. Oh well, next time. I hope you are all feeling
decent today!
Maria
DM 01/97 -- AP 11/98

<A HREF="http://www.pcworld.com/pcwtoday/article/0,1510,10912,00.html"
here: PC World News: Adam.com Offers Healthy Advice
</A

Hi group,
Saw an article on TV on treating osteoarthritis and thought that some of
you may be interested in it. It can be found at:
http://www.goodmedicine.com.au/factsheet/factsheet_display.asp?articleid=297
Hope you find it interesting,
Love and hugs to all,
Jude.

I had a cavity filled and requested that the dentist use composite (white)
filling. He only agreed because he said it was a small cavity. Now 2 weeks
later the upper tooth that hits the lower recently filled tooth is sensitive
to cold and now I am going to have that tooth filled.
Was composite the right choice over amalagam?
Carol*

Hi All,
It's been awhile since I've written, or even had much chance to read.
Funny how as the days get longer, time gets shorter. I need to move my
computer to the porch. Anyway, it's been 4 months today that I've been on
ciproflaxin, so this seemed like a good time for an update.
First, let me tell you, my back feels better today than it has in 4 years!
I have less range of motion from the damage done, but I'm virtually pain
free! Call it a miracle. Of course, you can't have the good without the
bad (seems like). Dr. Armstrong (who's amazing by the way!) wanted me to
go on try Enzyme Potentiated Desensitization. In order to facilitate that,
she had to change the NSAID I was on, and have of course been on for years.
I'm not sure if that's the cause, or if my Crohn's disease is acting up,
but April 9, when I was supposed to be on a train to Ottawa to see the doc,
I was getting my blood checked because I didn't have the energy to make the
trip. My hemoglobin had dropped to 58. Normal is around 150. So in the
past month I've had 5 pints of blood, a small bowel enema and an ultrasound
in hopes of finding where the blood is coming from. No luck so far. My GI
put me on a steroid called budesinide, and if I haven't healed in 2 months,
he's going to do a colonoscopy and gastroscopy. Anyone ever had to drink
Golytely? You don't! So I'm keeping my fingers crossed. One thing my GI
told me that I did find interesting. They've genetically engineered mice
with the HLA-b27 gene. I don't know about joint results, but the only
thing the mice responded to from a gastro-intestinal standpoint was cipro.
So more evidence for antibiotics. If it keeps piling up, maybe it'll
eventually tip the scale.
Dr. Armstrong also wanted me to get my mercury fillings removed. I saved
up for the last 6 months, and last week I faxed her to let her know about
the anemia and the dentist. She called me at home around 10 that night.
We discussed a number of things, including the results of my hair mineral
test. But what's most important to the group is that she warned me that
many of the white plastic compounds dentists use have other bad stuff in
them. Things like barium (so they'll show up on x-ray), zinc, aluminum,
fluoride. the Dr. told me that she's had patients replace their fillings
and get sicker. So I talked to my dentist, I talked to Vivadent (they make
the stuff he uses); I called a dentist in Wisconson who uses something
called Holistore, and I called their head office in California. I had them
all send me info so I could compare. Finally I went ahead, but it was down
to the wire because I only had a couple of days before I had to let my
dentist know, or cancel a 3 hour appointment. So a warning to all of you
considering getting their fillings out. It's never as easy as it seems.
Turns out I also have to get a reverse osmosis water purifier because
Toronto water has an alarmingly high content of aluminum.
Even with all the complications, I got out of bed this morning with
absolutely none of the morning pain and stiffness that's been a fixture of
my life for so long. And every morning like that is a blessing!
I hope everyone else is well, or at least heading in the right direction.
Shaun
AS 13 years, AP 4 months
Shaun A. Firth
"There is no one right way to live."

I have scleroderma and have recently been suffering from bacterial overgrowth
(loss of appetite, nausea etc.) My gastrenterologist treated me firstly with
tetracycline which worked. He is now going to give me minocycline 10 days of
each month if the symptoms terurn (which they have several times).
However, I am hoping to start continuous low-dose antibiotic treatment. My
gastrenterologist does not want me to take minocycline continuously in case I
become desensitized (as far as the bacterial overgrowth is concerned).
Are ther other antibiotics which can be used for the low-dose continuous therapy
instead of minocycline? Any help here woud be greatly appreciated.
Thanks,
Melanie.

Hello all,
I was wondering if anyone on the list has dermatomyositis? My mum
went to the dermatologist today because of the severe eczema she
has developed on her hands in the past six months. They are
cracked and peel like crazy. Well, she also asked him to take a
look at these faily large, smooth, deep red patches of skin that
she has on the front of each calve.
He asked her if she had diabetes or if anyone in the family did,
to which she relplied no. He's sending her for blood tests, and
on the requisition, she said it had the word "dermatomyositis".
So, I did a little reading up on dermatomyositis, and it said it
can affect the lungs, which caught my eye because my mum is
scheduled to have a bronchoscopy done on her lungs after her
doctor found two small masses in her right lung on an x-ray. I've
been worried sick that it lung cancer, as she has smoked for well
over 30 years. So I'm curious as to whether fibrosis of the lungs
can appear as spots on an x-ray. She doesn't have any coughing
problems, but is frequently short of breath and sometimes wakes
up at night, gasping for breath.
She has the odd aches and pains in her body, but nothing serious.
She does have iritis, an inflammation of the iris, which is of
course, an auto-immune disorder in itself.
I read that a malignancy can be associated with this disorder,
which scares me. Has anyone heard of this?
Thanks,
Kyla

My mom passed the following article on to me. It was in her paper a couple
of weeks ago. Is anyone familiar with the Experimental Biology meeting and
any further findings?
"Some people may have an autoimmune disease because they're harboring cells
acquired from their mother during her pregnancy, a new study has hinted.
If the theory holds up, it may lead scientists to new therapies for lupus
and other diseases in which the immune system attacks the body's own cells.
At the Experimental Biology '99 meeting last week, scientists from the Fred
Hutchinson Cancer Research Center in Seattle reported on a 15 year old boy
with lupus. Most of the immune cells in the boy's blood had sex
chromosomes normal for a boy - one X and one Y. But Dr. J. Lee Nelson also
noticed a cell that had two X chromosomes, the normal arrangement for a
woman. Further studies found the cell came from the boy's mother."
Liz H.

Dear Group,
This subject was recently mentioned so I thought I'd share the
experience of a RA patient with very severe, long-standing disease.
I've written about Lilly before. (She survived the atrocities and near
famine of a concentration camp in WWII.) Her Internist and Oncologist
thought she had heart involvement and cancer, but it was an unusually
severe case of systemic candida. She had been on high doses of
antibiotics for years with no provision to counter the loss of good
bacteria in the intestine. We nearly lost her several times. The
oncologist gave her three transfusions with his own blood. The experts
(Warren Levin, Orin Truss, etc. all failed in their attempts to help
her.)
I finally convinced her to try Candida Plus, reducing the AP dosage.
Dr. Franco was very pleased with the lab reports which showed slow but
continuing improvement. However, the RA worsened to the point she was
incapable of doing anything again - worse than ever. Lilly begged Dr.
Franco to order IVs but he decided to change oral antibiotics to Cipro.
The Cipro was a big success but it caused an increase in the candida
which in some areas looked like it was actually eating the flesh. Let
me just say - it's very nasty. A real catch 22 situation.
I asked her at this point to consider colonics and rectal probiotics.
It would eliminate the impaction on the intestinal walls thereby also
reducing the candida count, and the infusion of the probiotics would
help rebalance the system. (I've been working with Lilly for 9 years
and I think if I told her to jump off a bridge she would do it.) Three
months ago she started weekly colonics done by a registered nurse who
has her own office. They are still removing impacted 'debris'.
Yesterday she had No. 13 and last night she called to tell me, to her
amazement, they washed out two blueberries. She hasn't had any
blueberries since she moved from Florida a year and a half ago!
I need to add, this woman does not suffer from constipation and has
always had normal elimination.
Then there was the case of Linda Riley - another patient like Lilly.
After an entire week of colonics her weight dropped 50 pounds. This
woman does have constipation problems.
There are many clinics in the US and Mexico that treat severely ill
patients. Diet, supplements and colonics are the foundation of their
therapies.
Ethel

Hi,
I'd like to know what brand people are taking. I am hoping to find a brand
that Vitamin Shoppe carries. Their own brand is only 6%, which isn't
enough. Thanks
Ute
RA 3/98 AP 5/98

Hi all, this is Skippy here. I want to let you all know that along with ALL
the supplements and a restricted diet after food allergy testing in March,
minocin 100mg. AM and PM MWF started in August of last year, my Dr. added
Zithromax to my program, this was done 3 weeks ago. Today is the beginning of
my fourth week on the Zithro. Doc said 500 mg. Tues. & Thurs. , however I had
read Joe Graff's post on the herx he was having so with Ethel's input and Joe's
report I went with 250mg. on Tues. & Thurs.
Last Friday night after completing my 3rd week on the Zithro, I went to the
bowling alley to watch my two oldest sons bowl off for 1st place and for about 2
hrs during the evening I could not figure out what was happening to me, my whole
body just seemed different, but when I asked to pickup a 6 month old baby that
was there, it dawned on me that my pain was greatly diminished and that earlier
that same evening I could not have even thought about picking up and playing
with that baby.
Saturday morning we had to make a 200 mile trip in the truck, so I was a little
stiff but the pain was still minimal. Just really tired.
Sunday we went down and went horseback riding for awhile and then hubby took me
out to dinner of which I only cheated a little and had 2 pcs. of garlic toast
that I should not have had (wheat allergy) but it was mother's day so I did any
way. Went over to our oldest son's and then home and I jumped on the riding
mower and mowed lawn for about an hour. Slept pretty good that night.
Monday, I was still tired, we took the granddaughter down to ride, I did not
ride as I had some serious grocery shopping to do and did not want to push my
luck with the pain. My knee was hurting a little and both wrists were sore if
much pressure was applied.
Went shopping and by the time I got home and got the groceries unloaded and put
away I was whipped and both knees and feet and my wrists were good and sore. I
figured I would pay for overdoing it big time. The last shopping trip like that
I wore braces on both knees and on my wrists and hands.
This morning I got up and was surprised that I did not need any help in and out
of the shower, even managed to fasten my bra myself, and some days that had been
impossible. I am not using the riser on the toilet, to help with getting up and
down. I just feel so much better. Not 100%, but a whole lot closer than I have
been for years. Today I think I will just do some laundry and play games with
my granddaughter and not push my luck any further.
I want you all to know how much we appreciate this group, sure miss some of the
regulars that don't post anymore as they were the ones who gave us the courage
to go this route a year ago. Lisbeth, my buddy, has been a Godsend to us.
Thanks to one and all and I will continue to let you know what is happening.
Leslie Carroll is going the same route as I am and with about the same results
as she is just one week ahead of me on the zithro and on the improvement. I
keep up with her and Dr. Franco's suggestions and then know which way to advise
my Dr.
A BIG THANKS to Chris and Ethel for all their advise and for the list of Drs.
that led me to where I am now.
My only complaint at this point is a twinge of pain in my right knee and my
wrists still hurt if I apply much pressure. Other than that I am just tired,
tired, tired, and we are attributing that to all the months of pain that kept me
from resting or feeling the tiredness. Right or wrong on that I will get to
feeling better yet as far as being tired. I have to many things to do, to not
get there.
If I forgot anything or can answer any questions just send me an e-mail and ask.
Love and best wishes to you all.
Skip and Denny
Skip RA 10 years AP Aug of 98, Zithro starting 4 weeks.
Denny OA 2 years AP 6 mos.
Someone posted awhile back that if you go to a store and they don't have what
you want, you just go to another one. Same thing goes with Drs. just keep on
trying. You will get there.

Could someone repost the names & brands of (natural) pills used in candida
therapy? Also, any juices which are good for this treatment?
-mike-

My son found an article in Science News April 17,99 issue called
Arthritis Care:Beyond tea and sympathy
It starts with:
It sounds lik a dessert request, but a pot of tea and bowl of cherries may
prove a prescription for defusing painful overreactions by the immune system.
I have summarized the article from here on:
.......green tea and tart cherries...These foods contain antioxidants that
inhibit the Cox-2 enzyme, which the body employs to fire up this inflammation.
....Tariq M Haqqi and his colleagues at the Case Western Reserve University
in Cleveland isolated compounds known as polyphenols from green tea and gave
it to mice that were given a substance that triggers immune reactions
mimicking RA. 100% of the mice given plain water developed the disease, 44%
of the mice that were given the polyphenols in their drinking water developed
the disease but the symptoms were far milder, showed up later and typically
affected just one paw. The affected paws also had virtually NO cartilage
damage vs the joints in the other mice which had significant damage, also had
far higher concentrations of immune-system cells and the
inflammation-triggering compoundsthat they produce, such as Cox-2 and
TNF-alpha.
Haqqi tested this twice, with same results and now he is trying to identify
which of the polyphenols are most protective.
The other natural compound shown to have anti-inflammatory activity are
antioxidant pigments extracted from tart cherries. chemist Nair at Michigan
State University in East Lansing say that eating 20 tart cherries per day may
provide a natural alternative to aspirin....... the cherry compounds are not
only some 10 times as potent as aspirin in inhibiting Cox-2 and Cox-1, but
also remain active longer.
Unfortunately, he adds, tart cherries are much more sour than cranberries.
Cooking destroys much of its effect.

Hi Group,
I have a question for Dr Chiu or anyone who would know.
I am taking 8mgs of Aristocort (steroid) a day. I am going to the doctors on
thursday to have my knees drained and was wondering if it is OK to have the
steroids injected in my knees while I am on oral steroids?
Before I was on the oral steroids I used to have 20mgs of steroids injected
at the time of the draining. It always made me feel like a new person. The
oral steroids were never as good as the injection.even at a high dosage.
If it would be ok should I not take the 8mgs that day and continue with them
the next day or what?
I would appreciate any help you can give me.
Thank you,
Pat

Hi All,
I have been in the background for some time now and just wondered if I could get
some opinion on the current meds & sups I am on at present.
I was cruising along nicely on AP until Xmas and then fell of the healthy food
and overdid it and had a flare and just when I was starting to come back I tried
to change from Prednisolone to Hysone but this didn't work. I flared really bad
but we think that it was also that I had a flu needle the week before trying the
change and had a flu like reaction from that as well.
Anyhow I went back to the prednisolone and haven't improved more than 10% since
so I contrbute this to a yeast overgrowth and soem stress. The docs here don't
test for yeast overgrowth just prescribe Diffluclan and I have had that twice in
the past and want to try to get away without it this time! I used to feel
better the morning after the antibiotics but this hasn't happend for some time,
hence I believe in the yeast theory!
I have taken in the comments on the Olive leaf extract and have added it to what
I already take so I will list all the meds and supps and if I could have any
opinion on improvements / changes etc it would be greatly appreciated!
AM:
2 Acidopholous caps
1 Olive Leaf extract 10%
1 heaped teaspoon Joint food (Glucosomine & Chrondroiton Supp)
2 Cod Liver Oil caps 1000mg
1 Multi vitamin and Mineral supp
7.5 mg Prednisolone
1000mg Naprosyn
Lunch time
1 Olive Leaf extract
Supper/tea time
2 Acidopholous caps
1 Olive Leaf extract 10%
1 heaped teaspoon Joint food (Glucosomine & Chrondroiton Supp)
2 maxepa Oil caps 1000mg
5 mg Prednisolone
1 Losec (Ulcer)
1 Endep (Amitryptelene)
MWF AM 100 mg Doxy PM 150 mg Mino
every second Thursday 900mg Lincocin via I/v.
Any comments or advice would be greatly appreciated.
I know that this process is slow and I accept that. It is just that I had the
RA factor down to 112, prednisolone down to 5mg daily and feeling improvement
each week and now it is back up in the 600 range and the pain and inflamation is
that of a pretty constant flare and not receeding.
Thanks in anticipation
Julie ra Jan 97 ap May 98
Townsville Australia
jamulder@...

You know what I find interesting - if the theory is that RA is caused by
the immune system going nuts on itself and the doctors think that the way to
treat it is to suppress the immune system, then why do they tell us to make
sure and have a good diet? Seems if you ate well, you would boost your
immune system. Under their theory, seems like junk food would be much
better - would suppress your immune system and you should feel better
quickly! But I don't think that most of us feel better by eating junk, do
we? I'll have to ask my doc next time why we're supposed to eat well, if
we're trying to suppress the immune system.
Mark

HI JUILIE< thanks for imformation, everything helps, I only wish I knew what
antibiotic to take , iam on prilosec 20mg curprime 250 mg procadiaxl60mg
zolft, for nerves for not smoking they work good for nerves they dont hurt
any thing. i hope well if we can get someone to write back, before thur,
it make my day because, I want to show my DR for me and see about antibiotic
thearphy' what ever they do . thanks JUILIE MARIE< and see if he read up on
it.

From our home page: Dr. Weg's Protocols for the peroxide.
ANTI-INFECTIVE PAIN MANAGEMENT PROTOCOL
Part One - Patient home therapeutics
Home oxidative therapy with hydrogen peroxide for all
patients:
A. Peroxide baths: Mix 3-4, 16 oz. common brown bottles of
3% peroxide in a hot water bath with 2 cups of
Epsom salt. Soak for 30 minutes. Do this at least 1 to 3
times per week (no vitamins should be taken 4-8 hours
before bath). This is the preferred way to take peroxide.
Still better is a Jacuzzi with the jets turned on. This
enhances the effects. A home whirlpool such as Polinex (cost
about $110) fits on a standard bathtub and also
greatly improves the effect. Increase the amount of peroxide
and Epsom salt proportionally for the larger tub
sizes. For economic bulk purchase of peroxide, consider
obtaining the concentrated 27% solution sold by
the gallon as a cleaner in some swimming pool shops. It is
called "Baqua Shock". This product is dangerous
to the skin right out of the bottle. It must be diluted in
your bath. Use about 1/10 the volume needed of 3%
peroxide in your baths.
B. Peroxide sponge/spray bath: Apply straight or dilute 3%
peroxide, less than a full 16 oz. bottle in total, to
your skin. Use liberally directly over as much surface as
you can. Leave this on for up to 5 minutes and then
wash off. This technique can work very well especially after
a work out, hot shower or hot tub, when you are
warm and/or sweaty with your pores open. To obtain results
equivalent to a bath, it is required that you first
apply the tanning product described below and wait about 5
minutes for your skin to flush before applying
the peroxide.
HIGHLY RECOMMENDED - The use of Swedish Beauty "type A" or
"Platinum" tingle factor 2 or 3 brand of
tanning accelerator (available at tanning salons) applied to
your skin and left on for 5 minutes bef