Health Info

Recently I came across a new book dealing with inflammation control
by selective nutrition.
This subject is of outmost importance to sufferers of inflammatory
diseases. This is not just another nutrition
plan based on opinion and empirical observation; rather, it
originated from very thoroughly tested
biochemical studies by top researchers.The author F.H Chilton, PhD
has impeccable credentials having
worked at the Medical Schools of John Hopkins University and Wake
Forest University. He spent decades
researching Cox2 inhibitors and studying the biochemistry of the
inflammatory phenomenon.
The book details biochemistry as well as a practical application of
nutrition for the use of the newly gained
knowledge. Having a PhD in chemistry allows me to critically
scrutinize the presented information as well
as recognizing the soundly researched basis of this new approach.
This nutrition plan has been evaluated by six clinical studies (some
of them double blind). It has been
successful in reducing and often eliminating detrimental inflammation
altogether. In other words, this plan
achieves the benefits of Cox2 inhibitors, like Celebrex, without the
dangerous side effects.
It has healed RA and related conditions in many cases .
It is encouraging that a medical researcher trying to develop
anti-inflammatory drugs comes to the
conclusion that a nutritional approach offers the only side
effect-free treatment.
In addition, the Chilton plan costs practically nothing since it only
requires to eliminate foods containing
arachidonic acid. This acid is the raw material which the body needs
to create the inflammation starting
messenger molecules such as leucotrienes and prostaglandins. By
minimizing arachidonic acid, the
inflammation phenomenon is virtually eliminated. In addition,
supplemental GLA (gammalinolenic acid)
is used to prevent any residual arachidonic acid from turning into
the above-mentioned inflammation
promoters.
The book is titled WIN THE WAR WITHIN and published by Rhodale
Press, 2006. It is available for $ 30
through Rhodalestore.com or by calling 800-848-4735. The authors
are Floyd H. Chilton, PhD and
Laura Tucker.
Don't overlook this one !
Robert

I have never tried prednisone so far. Soon will be starting 20mg that will be
tapered down to 0 within two weeks. Do these short courses still involve side
effects? I've read the list of side effects and there are so many possible
ones that I don't know what to expect realistically. I just want to be prepared.
This is a big step for me as I have avoided all drugs besides antibiotics
until now.
Also, just had a major breakout of vasculitis all over my legs...very dark
purple spots. Has anyone had this that can tell me how long it takes for them to
fade completely? I haven't found mention of fading in any of the literature.
Thanks!
Emma

Have we had a discussion on pain relief from a hot bath with Epsom salts?
I've tried it several times, and I think it really helps.
My directions said to draw 4-5" of hot water, as hot as you can stand
it, then sprinkle in and stir around 2 cups of Epsom salts till
dissolved. Soak for 15-20 minutes, rinse off with clear water. I don't
know if it's the heat or the salts or the combination, but I find it a
good, inexpensive way to relieve my aches and pains before bedtime. I
buy Epsom salts by the 1/2 gal. which gives me 4 baths @ 2 cups per
bath. I think the Epsom salts are under $2 per 1/2 gal. at a pharmacy
in our supermarket.
I read about another routine that did the same as above, but after the
15 or 20 minutes, the instructions were to add 8 oz. of hydrogen
peroxide, stir it around and soak longer. Then rinse with clear
water. I haven't tried that, has anyone else?
Be sure to stir the Epsom salts till it dissolves otherwise it could be
slippery to step on. And of course make sure you have a bath mat or
non-slip surface in the tub.
I hope this suggestion will be helpful and relieve some pain. Good Luck!
Bev in Iowa

This is my first time to post. Does anyone know of an alternative care doctor in
Tulsa, OK? I was diagnosed with RA in June and it hit me like wildfire in
September.

BlankAcupuncture May Cut Arthritis Pain
Study Shows Benefits in Patients With Knee, Hip Arthritis Pain By Miranda Hitti
WebMD Medical News Reviewed By Louise Chang, MD
on Tuesday, October 31, 2006
Oct. 31, 2006 -- Acupuncture may ease hip and joint pain from osteoarthritis,
the most common type of arthritis, a German study shows.
"Acupuncture should be considered as a treatment option for patients with knee
or hip-associated chronic pain," write the researchers.
They included Claudia Witt, MD, of the Institute for Social Medicine at Berlin's
Charite University Medical Center.
Witt's team notes "marked clinical improvement" in pain and quality of life in
patients with hip and knee osteoarthritis after three months of acupuncture
treatment.
In a journal editorial, two Chinese doctors support using acupuncture to help
treat knee and hip osteoarthritis -- but they also note the German study's
limits.
The study and editorial appear in Arthritis & Rheumatism's November edition.
About Acupuncture
Acupuncture is one of the world's oldest, most commonly used medical procedures,
according to the National Center for Complementary and Alternative Medicine
(NCCAM).
Started in China more than 2,000 years ago, acupuncture has become increasingly
popular in Western countries. The technique involves stimulating certain points
on the body, often by inserting and manipulating thin needles.
Acupuncture may be useful in treating conditions including osteoarthritis,
according to background information on the NCCAM's web site.
Patients should talk to their doctors about any complementary or alternative
medical treatments, including acupuncture, says the NCCAM.
Acupuncture Study
Witt's team studied more than 3,500 people in Germany with osteoarthritis of the
hip and/or knee.
The patients were in their early 60s, on average. About 11% had had acupuncture
in the year before the study.
First, the patients decided which joint hurt most -- their hip or knee -- and
rated their pain in that joint.
Next, about 3,200 patients got up to 15 acupuncture sessions from doctors over
three months. About 300 other patients went on a waiting list for the same
acupuncture plan.
Afterward, about a third of the patients who had immediately gotten acupuncture
reported less joint pain and better quality of life.
Those results held for three months after acupuncture treatment ended.
In contrast, such improvements were reported by about 6% patients on the
acupuncture waiting list.
No serious side effects were reported. But about 5% of the acupuncture patients
noted side effects such as minor bleeding, bruising, or pain where the needles
were inserted.
Study's Limits
The study has some limits, note editorialists Tao Liu, MD, and Chen Liu, MD, of
China's Jilin University.
For instance, most patients insisted on getting acupuncture right away. They
might have believed acupuncture would help them; that belief may have swayed the
results.
Also, no patients got sham acupuncture, which would have been useful as a
comparison.
So it's not clear if other factors (such as caring medical attention) had any
effect, note the editorialists.
"Given that the biologic mechanism of acupuncture is still unclear, the study by
Witt et al. furthers our understanding of acupuncture and adds to the
accumulated evidence supporting its efficacy," they write.
"Such evidence warrants extensive use of acupuncture in various chronic pain
conditions," the Chinese doctors write.

Source: UT Southwestern Medical Center
Date: December 27, 2006
Molecular 'On-off Switch' Controls Immune Defenses
http://www.sciencedaily.com/releases/2006/12/061226095357.htm

Hi All
I would like to invite anyone who has Ankylosing Spondylitis or any other
related illness to join this new group, we are a very friendly chatty group
that has just started up.

Well, after two years of symptoms but still normal labs, my rheumy
thinks I may have RA - sero neg. She is still treating me with
Plaquanil and an NSAID. I didn't tell her I started the AP (she
wasn't for it). My GP knows b/c she's the one prescribing it for
me. One thing my rheumy told me that I've never heard before.....
she says 30% of her patients are sero neg and 50% - 70% of those 30%
have little to no joint damage. She said she didn't understand
why. She says stronger immune systems play a role in it. That's
why I intend to continue with my supplements that build my immune
system.
I have a question... does anyone have achy symptoms after missing
one mino dose? I'm only on 50 mgs per day and after missing a day
or two (when I forget to take it), I feel yucky. I recently missed
my plaquenil and NSAID for two days and pretty much all symptoms
reappeared. Stinks! I still don't have my last labs back but I'm
assuming they are neg and normal since I haven't heard from the doc
yet.
Thanks for listening. It's nice to have someone (even you all
without a face to me) that listens and cares. Do you ever feel
alone? I'm wondering if I may be dealing with a little depression.
I fight it but I feel it more and more... along with fatigue. I
keep telling myself the enemy comes to steal, kill and destroy and
is attacking my mind. I know everything works for good....

Hi,
I have been on AP for almost eight years now. For the
most part, I have tolerated minocin (100 mg) well,
except for gum discoloration and yeast issues. I came
off of minocin for 6 months about two years ago
because of the gum discoloration. The disease flared
and so I went back on it.
I started AP within a year of the onset of RA and as a
result I have no deformities.
I worry about the long-term effects of minocin and how
long I can actually stay on it. Has anyone been on AP
for 10+? I would love to hear their experience.
Thanks!

Hi everyone,
haven't posted in awhile. I started minocin 5 wks ago and am up to 100
mg 3 days per week.
My question is about liver/gallbladder flushing. I had done some
flushes several years ago. Lately I have been feeling some movement
under my ribs.No pain or gas. I did the olive oil/ lemon drink for a
couple weeks then stopped. I think the movement started after starting
the drink. So i am wondering if that drink would be enough to flush
out stuff. Maybe increasing the oil a bit. I did, on last ultrasound,
have about 4 stones. My diet is good. Should eat more veggies. But I
eat no processed foods. I do eat alotof butter tho.
thanks,laura

Hi Emma,
I've had a small amount of experience w/prednisone. Avoided it completely,
thanks to this
group way back in 1998. I was one of the lucky ones who started on the
antibiotic
protocol (AP) in the first place, instead of going through the
methotrexate/prednisone
route.
I did have prednisone in 2002 and 2003....after doing so well on the AP I had to
have two
abdominal/female surgeries. I still have a cough and all symptoms are 90%
reduced,
including the cough. Anyway, I coughed during surgery and I was given 100 mg of
prednisone. The following year I knew to discuss the prednisone in advance, and
was
given a dose of 100mg prior to surgery, followed by a gradual taper over maybe
two or
four weeks.....similar to yours.
Noticible effects: Not a lot for the duration, although I was very careful to
monitor my
food intake and did notice the "non-sleeping/high energy" mode before needing to
crash.
Basically, the highs and lows. I also noticed that last 10% of
pain/stiffness/rash/cough
associated with my dermatomyositis was gone with the prednisone....but it wasn't
worth it,
in my opinion. I was happy to wean off of the drug known for osteoporosis,
muscle
wasting, diabetes, and all sorts of side effects.
As of now -- I still have 10% of my cough, a tidge of muscle weakness....but the
AP is alive
and well and I'm still on it. Can't complain.
Hope this helps. Take care,
~Connie

Has anybody in this group used or knows about ozone therapy?. If they had used
it, could you share your experience please?
Talia

Is anyone taking only minocycline for RA? I take it twice a day 100 mg. I am
also on Celebrex 1x daily and if I miss a dose of the Celebrex than I experience
lots of inflammation and stiffness. I was hoping to be able to discontinue the
Celebrex eventually but I am not ready yet. I have been on AP for a little over
3 months now. I'm just wondering at what point others were able to rely on only
the antibiotics and still remain somewhat comfortable.
Maggy

In early December 2006 I finally got in to 2 specialists after
suffering from Scleroderma for 12 months and they would not hear of
antibiotic therapy when I brought the subject up. I was put on
Methatroxate. I wasn't feeling well from this drug and ended up last
week with shingles. I went to my family doctor with all of the
information that we could gather about Minocycline and asked him for a
prescription of 100mg twice daily - there was no way that I was going
to get this doctor to do IV therapy. I had one shot and asked him for
the oral dosage.
I am not sure if this dosage and frequency is correct as I see in some
of the material that it is taken 3 times a week only Monday/Wednesday
and Friday. If anyone is on just minicylcline could they please help
me with the frequesncy and dosage as I am on my own and taking one pill
of 100mg every 12 hours 7 days a week.
Also any idea of how long before I may expect to see some results??
Any response is greatly appreciated.

Has anyone purchased Minocin from Mexico? Does anyone know if it's available
there and, if so, if it's substantially cheaper than in the USA?
I'm asking because I used to have no health insurance and was surprised to
see that what cost me $96 a month in the USA was only $10 in Mexico! My
friend Sherry's husband uses inhalers for his asthma, same as I do, and was
surprised that he could get two (2) in Mexico for the cost of the the co-pay
for one(1) here in the USA, about ten dollars ($10).
I'll probably be going to Mexico next month and, if so, will check on the
Minocin situation.
- Anna

Hi, It doesn't sound like your dose was high enough anyway. You may
have needed to work up to 200 mg M-W-F or even up to everyday.
Everyone is different. You also may need other antibiotics to kill
other microbes. And then there is all the other stuff to think about--
like yeast and hormone balance.
laura

If you are one of the 5 per cent of RA's with AA amyloidosis, you are welcome at
our support meetings. The schedule is as follows and you can go to our web site
www.amyloidosissupport.com for details. Usually the kidney is the involved
organ.
http://www.amyloidosissupport.com/upcoming_events.html
Muriel
Amyloidosis Support Groups Inc.
ASG www.amyloidosissupport.com
Toll Free 866-404-7539

I'm sure you've been over this before . . . but I don't know
the "answers".
1. Who makes the Minocin that is recommended?
2. From where can I get it at a reasonable cost?
3. Is there any generic for Minocin that is OK?
4. If so, how can I get that?
I found Minocin (100 mg., 100 pills for $160.00 at
canadapharmacy.com)
5. Does anyone know about that? (That's a far better price than my
local Walgreen's.)
6. I think I read somewhere that Walmart has a good price. Is that
the "good stuff."
Thank you very much!
Vonda

Thanks to Cooky, Martha and Harald for responding to my posting 1/16/07.
I neglected to mention that one of the early symptoms I had was swollen
and tender temples, throbbing headache plus aching all over. My Dr.
suspected Giant Cell Arteritis and put me on the high dose of Prednisone
(to prevent blindness IF I had GCA). I had a biopsy where the surgeon
took 2" pieces of artery out of my temples. They were benign, but my
Dr. left me on the high dose of Prednisone.
During my 3rd massage this month, I asked the therapist to concentrate
on my neck and shoulders. She certainly did. Last night was the first
time in weeks that I slept without shoulder pain. She believed my
problem was in one of the major muscles in the neck-scapular area, which
was referring pain to my shoulder. Hopefully she was right and made a
difference. I'll have my chiro. daughter adjust me Friday again. I
don't know if that's considered a flare, or if I injured myself lifting
weights earlier. Today at the rec center, I walked the track, used a
leg machine and gently lifted 5 lb. weights for a very short time.
Seemed to go well and it felt good.
I will tell Dr. Sinnott about the shoulder episode, but I'll also ask to
start decreasing Prednisone by 1/2 mg. every 2-3 weeks and start taking
fish oil caps again which are anti-inflammatory. I try to add Turmeric,
ginger and hot pepper to my food often, they are also anti-inflammatory.
Hopefully he'll agree to my request. I want OFF Prednisone. My
mother suffered horribly with Osteoporosis and I already have
Osteopenia, if it hasn't slipped to Osteoporosis due to months on
Prednisone.
Bev Hannon, Iowa

Hello, what is AP treatment?

Hi Vonda,
A very reliable and reasonable canadian pharmacy is buylowdrugs.com.
100mg Minocin is 125.95. Shipping is 9.95, so try to get a one month
script with 2 refills...shipping will be the same. 1-866-596-4364 is
their number. The company that makes the canadian pelleted Minocin is
Steifel and it is the same as that made in the US by Triax. I haven't
ordered from them yet but i know of several who do and have no
problems with them at all. They are a storefront pharmacy in BC, Canada.
Jan

Hi Caol,
I wonder if you could tell me the dosage you take and the frequency,
and for what condition. Could you tell me briefly why you didn't
tolerate minocin and if it worked for you?
Thanks!
esther

Hi, This sounds like it could be yeast. Are you taking lots of probiotics? It
is very important that you take lots of probiotics at least 2 hours away from
the minocin/minocycline/doryx.
Carol_DM

Have you tried your local health food stores? I know one of the ones in my
town, a local place called Vitaman, sells them. I tried them. I didn't use
them long, too expensive to try them for very long, but I'm a former smoker
and there was a definite nicotine odor to them when I removed them so I'm
hoping they were removing nicotine residue.
- Anna
Jknitl@... writes:

Dear group,
My nephew who is 6 years old was diagnosed with missed connective tissue
disease. He is always getting different illnesses some bacterial and other
viruses. He also gets swollen joints and breaks out in hives. I would like to
help his mother find him a good dr. that will start him on ap plus help him
strengthen his immune system with supplements. She lives in the Detroit,
Michigan area ( Woodhaven) I would like her to have a list of drs. in the area
but more importantly I would like to hear from anyone in the area if they had
seen any of these the drs and would recomment them.
Thank you,
Annie Salem

Hi Gang! Geoff here.
To those bloated ;-)
Bloating = gas production w/in the GI tract. Gas forms when foods not properly
digested ferment. This is generally cause by one or both of the following:
1. The food is inherently indigestible by the host, e.g., lactose intolerance.
2. The host lacks adequate beneficial gut flora (probiotics) to complete the
digestive process.
In example no. 1, treatment is avoidance of the problem food, i.e., if you're
lactose intolerant avoid dairy products.
In example no. 2, treatment is supplementation of beneficial flora, i.e., take
probiotics if you have EVER taken ANY kind of oral antibiotic or antiseptic,
e.g., minocin, oregano oil, etc.
NOTE: Probiotic supplements are NOT created equal. There are dozens, i.e.,
88, strains of beneficial flora inhabiting the healthy human gut, lactobacillus
acidophilus is but one. Take a probiotic that has as many strains, including H.
Infantis, as you can find that also guarantees life and quantity, e.g., 800
billion live cultures guaranteed if used before xx date.
NOTE TWO: Contrary to marketing culture, bacterium do NOT have to be
refrigerated to remain alive not be of good quality.
NOTE THREE: Probiotics do NOT have to be in a dairy base. There are many
excellent non-dairy probiotics on the market, e.g., NF Formulas.
NOTE FOUR: Inherent indigestibility increases with age due to the reduction of
bodily production of enzymes and Betain HCl. Both of these are available
through inexpensive supplements, generally bound together in one product.
HTH
Geoff
Acts 2:39

just thought i'd respond to your message...
the way my doc explained it to me is that what's going on is both reactive
arthritis and rheumatoid arthritis. sounds confusing but it just means that
technically you might have rheumatoid (the tests and symptoms say so) but really
the arthritis is a reaction to some kind(s) of infections. the other thing that
makes our situation not a clear case of reactive arthritis is that reactive
lasts a shorter period of time and usually goes away with antibiotics. that's
the gist of it, maybe you could research it more. just google "reactive
arthritis" and a ton of info comes up.
if the antibiotics worked then you definitley know there's some kind of
infectious agent going on. just keep knocking the doors down until you get the
meds you need. my doc presribed me minocycline, flagyl, nizoral, ketek (all
kill some kind of infection) and i've gotten so much better!
ivory

Annie,
I went to the Center for Holistic Medicine in West Bloomfield, Michigan for 2
years. My doc was Dr. Jeffrey Nusbaum. I would highly recommend any of the three
doctors there. You can visit www.centerforholisticmedicine.com or
www.drbrownstein.com
I am now living in the Seattle area, so I got a recommendation from Nusbaum on a
doctor over here.
You can always visit www.acam.org for a holistic doctor in other areas.
I would recommend that your nephews' parents keep a good diary of his problems,
to help the doctor make a good diagnosis of his condition. This should include
his potential reactions to foods.
Best wishes,
Jeff

Does anyone have experience with the Born Clinic in Grand Rapids, MI?
Vonda

Isn't Flagyl an anti-parasite drug?
- Anna
bh1774pb writes:

Please be careful. I know it looks tempting, but Dateline NBC has
done a number of expose's about pirated drugs. Much of the drugs in
Mexico is either diluted or just plain fake. If you find a good and
reliable supplier, stay with him and just stay aware of the
possibilties. I would hate to see you get a raw deal...
Michael

Hi,
I was wondering if someone out there that has fibro could tell me
alittle more about what they have gone through. A rheumatologist just
started me on amitryptiline. Right now I hurt so bad all over. By
evening it is getting so bad that I just kinda lock right up when I
sit down.
Does amitryptiline really do the trick. How long before I notice a
change? He is starting me on 10mgs with instructions to double it in 2
weeks.
Karen

Can someone please tell me how to handle a new doctor? I want to try
AP and really do not know how to go about asking the new rheumy that I
will see Oct.4 Could someone please advise? Thank You!!
Kelly

We will have a kidney transplanter as our guest at Mayo/Phoenix this Saturday at
9AM at our Amyloidosis Support Meeting. For those of you with AA Amyloidosis
along with the RA this may be of interest to you. We will also be having a
kidney transplanter from Mayo at Jacksonville at our Charlotte meeting on
Feb.3rd. Please go to www.amyloidosissupport.com for information or call Toll
Free 866-404-7539.
Thanks,
Muriel Finkel
Amyloidosis Support Groups Inc.
(Uncle died of Amyloidosis Sept.23, 2003)

I am lookiing for a doc who prescribes Minocin and offers Clindamyacin
IV's in the Phoenix area.
Thanks

Craig,
Try www.acam.org
pretty reliable source for finding good holistic doctors
Jeff

dear group , i am a young woman 26 years with RA ,since i was 6 years old wich
is mean i have this disease for 20 years .my question is how with this condition
i can find a job ?and how i could aply for it .
i live on Allen ,TX .
love

Hi, the magnesium in the epsom salts is what helps the RLS. Just make sure you
are getting enough magnesium in your diet either by food or supplements.
Carol_DM

Discussion on the use of long term low dosage of antibiotics for the treatment
of auto-immune diseases such as Scleroderma, LupHi Tamara! Geoff here.
You wrote:
" ...I have a recurring bowel infection and the only way I can really be rid of
it is to get a "bag" I am not terribly excited about the idea, but would
consider it if it would help the RA... "
Things they don't tell you:
"Bag" surgery, AKA, colostomy, has a 50% mortality rate.
Diet is a major issue in recurring bowel infections.
University of Oregon's Linus Pauling Institute may be a better choice.
There is almost nothing that is not better than a colostomy for your situation.
Save the colostomy for people who get cancer or loose their bowels to traumatic
injuries.
Geoff
Acts 2:39

Hi,
this is my 12th day using the foot pads each nt, and so far I cannot say I
feel any benefit, either fatigue-wiise or pain and stiffness.
For those of you here who used or are using them, do you know just how long
they recommend applying them each night? Is it until the pads are clear?I
didn't see that in the directions. The pads are definitely dark each morning
when I
remove them, so I'm hoping there is some benefit even tho I don't feel it
yet.
Thanks
Judy Keels

Hi! I found this resource to be helpful and I wanted to share the info
with the group. ~PJ :)
NORD's Medication Assistance Programs
Since 1987, NORD has administered programs to assist uninsured or
under-insured individuals in securing life-saving or life-sustaining
medications. In addition to the estimated 50 million Americans who
have no health insurance, an increasing number of insured individuals
have policies that do not reimburse for prescription drugs. Others
have policies with low annual caps on prescription drug expenditures.
http://www.rarediseases.org/programs/medication

I was reading the Daily Oklahoman a few weeks ago and there is a Doc at
the Oklahoma Medical Research Foundation (this is where my research doc
is located)who is researching the affects of estrogen on autoimmune
diseases. Of course, I reacted to this and stopped taking estrodial
(hysterectomy - 2004). The strange thing is I really don't feel any
different since I stopped it. Has anyone or does anyone know of any
more studies on this?
I had been taking 100mg of mino MWF and the past 2 weeks I have been
taking a pill everyday. I do believe that the increase of mino has
helped alot with my chronic pain.
My nephew (23) just started chemo yesterday for Hodgkins Lymphoma. My
sister was told that this most likely was caused from a virus. I am
beginning to wonder if all diseases are viral. I would like any info
on this disease.
Thanks, Susie in Oklahoma

Other than walking, I do all my exercises in the pool. I find that water is
very good for me and it has always helped me feel better. i usually do the
aquarobics because it is so much gentler than on land. you can do weights
and use noodles to help you gain strength
lucy

I found a couple of web sites that you can purchase idems that will
help living, alot easier.. www.disabilityproducts.com and
www.visaids.com There is a necklace that you can wear , in case you do
take a tumble , you can call for help right away ..I fell a couple of
times , I was anemic ( did spell it wrong ) still am !! Yeah, i got
tired of dropping everything , so I bought myself a reacher !! I
bought mine at home depot .and I love it !!

Hi,
This is just a quick response to the jaw involvement question...Dawn,
I believe. I had the same ear pain that became jaw pain early in my
dx. Then i could only get my mouth open two finger widths. I was in
sad shape then, sat all the time, cried, slept, could hardly get food
into my mouth. I am 18 mo. into my AP treatment, but the jaw problem
was gone months ago. I open my mouth enough to get 4 fingers in...not
sure if that is less than before RA, but it's enough to eat anything i
want. (I began using my fingers as a handy measurement to see if i was
improving, lol...sounds like i sit around with my fingers in my mouth
=0...LOL)
It's very important to get your inflammation reduced (fish oil,
turmeric, ginger, etc). I also go for trigger point therapy, and that
helps break up areas where the tendons have tightened...which may
release your jaw.
Hugs, Jan ap 18mo ~ ra

Hi group....thought I'd throw this topic into our mix here. I assume all or
most of us are taking a multi vitamin along with the AP and our separate
supplements, etc. I've been thinking recently that I've tried many different
brands
from the local health store to purchasing them at my holistic doc's office and
I even did the metabollic testing from Dr Mercola two yrs ago and bought the
appropriate vitamins for me. I'm wondering now if I need to take a really
superior multi and wondered what some of you recommend and have tried with
success. It sounds so elementary but yet it's so important to take the right
one.
It's just one more "piece to the puzzle" as my doc always says.
Thanks for your imput
Judy

Thanks everyone for the recommendations for Phoenix docs.

is there a list of doctors in our site? Can we access it?
I was sent some info about a doctor in Allentown, PA I saved the info on my dard
drive and now I cannot open that computer, Thanks,

Dear Group,
There was past email correspondence about Minomycin, to the effect
that this is identical to pelleted brand name Minocin and is
manufactured offshore by Lederle for sale in Australia, New-Zealand,
Japan, and South-Africa. If you have any information about whether or
not Minomycin is the real thing, please email this Group, and I will
use your information to update my web page www.tmgp.com/minocin.htm.
By the way, I have updated that page with the latest pricing on
Minocin by Stiefel in Canada. Note that medicine purchases from
Canada are legal and are no longer being intercepted when shipped into the US.
Sincerely, Harald
See http://arthritisinsight.com/medical/meds/minocin.html
Brand Names and International Availability:
Borymycin (Taiwan); Cyclimycin (South-Africa); Cynomycin (India);
Dynacin (US); Klinomycin (Germany); Lederderm ; Mero (Taiwan);
Mestacine (France); Mino-50 (Belgium); Minocin (US); Minocin MR
(Hong-Kong); Minoclir 50 (Germany); Minocyclin 50 Stada (Germany);
Minogalen (Germany); Minoline (Taiwan); Minomycin (Australia,
New-Zealand, Japan, South-Africa); Minotab 50 (New-Zealand);
Mino-Wolff (Germany); Mynocine (France).
==================================================
INCREASING SALES THROUGH IMPROVED MARKETING
Harald Weiss, Technical Marketing Group, Inc.
4911 Royce Road, Irvine, CA 92612, USA
Phone: (949) 786-1403, Cell: (949) 933-1391
http://www.tmgp.com, hweiss@...
==================================================

Maggy,
I had lots of inflammation in the first months of AP too. What really
helped was taking lots of fish oil, turmeric and ginger. I took 9
grams of fish oil, 6 capsules of 500-665 mg turmeric, 6 capsules of
500mg ginger (divided doses thru the day). Really helped get that
inflammation down and you have to do that for the minocin do it's job.
You have just begun the journey, be patient and believe. It works.
Jan ap 16 mo. RA

HI all, in relation to the stomach pain, I am supposed to drink barium tomorrow
am and then have a CT scan...I thought my DR, DR W had told me to avoid barium
but I think at this point, we have to find out what my problem is...
Anyone had this done? any side effects? anything I need to know for after this?
Thanks much, Debbie

Thank you Pat...appreciate your thoughts, Debb

Dear All,
Please forgive me if I'm crossing a line here (if so please just
delete this post), but I've just listened to the FREE CD mentioned
below on the Natural Healing approach, and it is top notch. There are
many Natural Solutions you can create in your own kitchens, plus there
are some great diet tips I've never heard before. I especially loved
the information on Enzyme Inhibitors and Children's Health. Even the
S&H is FREE. It's not for the faint of heart though, as the lecturer
really hammers on the medical profession, sooooo if you're a big fan
of Medical Doctors you're going to be insulted.
Enjoy!
In Health and Love,
Vikki

I'm usually not a medicine conspiracy believer, but this cost for
Minocin is outrageous... The drug has been around since I was in
medical school in the late 70s!!!! $500-1000 for 100, Triax is doing
us no favor! I had no idea it was now so expensive...
Cheers -David

U.S. Department of Health and Human Services NATIONAL INSTITUTES OF HEALTH NIH
News National Institute of Arthritis and Musculoskeletal and Skin Diseases
(NIAMS) http://www.niams.nih.gov/
FOR IMMEDIATE RELEASE: Wednesday, November 8, 2006
CONTACT: Ray Fleming, 301-496-8190, <flemingr@...
NIAMS FUNDS NEW CENTERS OF RESEARCH TRANSLATION
Bridging the gap between bench and bedside is the goal of four new Centers of
Research Translation (CORTs) funded by grants from the National Institute of
Arthritis and Musculoskeletal and Skin Diseases (NIAMS), part of the National
Institutes of Health (NIH). CORTs are designed to bring together basic and
clinical research in a way that helps translate basic discoveries into new
drugs, treatments and diagnostics.
The four new centers are:
-- Center for Translating Molecular Signal Pathways to Orthopaedic Trauma
Care, headed by Randy Rosier, M.D., Ph.D., chair of orthopaedics at the
University of Rochester, N.Y. This center will study the biological basis of
fracture healing and the efficacy of a potential new treatment, teriparatide, an
injectable form of human parathyroid hormone that stimulates new bone formation.
-- Center for Lupus Research, headed by M. Virginia Pascual, M.D., at the
Baylor Research Institute in Dallas, Texas. This CORT will study the role of
different cell types in the origin and development of lupus, will develop
markers of disease activity and severity, and will look for new targets for
treatment. Lupus is an autoimmune disease that can affect many parts of the
body, including the joints, skin, kidneys, lungs, heart and/or brain.
-- Center for X-Linked Hypophosphatemic Rickets Research, led by Thomas O.
Carpenter, M.D., at Yale University in New Haven, Conn. This center will study
the various molecular contributors to this genetic form of rickets and work
toward developing new treatments.
-- Center for Research Translation in Scleroderma, headed by Frank Arnett,
M.D., professor of internal medicine in the Division of Rheumatology at the
University of Texas Medical School at Houston. This center will study the
molecular basis of scleroderma to understand its underlying causes using
functional genomics and gene networks. Studies will involve a multiethnic cohort
of scleroderma patients, as well as two mouse models of fibrosis recently
developed at this center. Scleroderma involves the abnormal growth of connective
tissue, which supports the skin and internal organs.
CORT grants are a new funding mechanism for NIAMS, and require centers to
encompass at least three projects, including one clinical and one basic research
study.
The mission of the National Institute of Arthritis and Musculoskeletal and
Skin Diseases (NIAMS), a part of the Department of Health and Human Services'
National Institutes of Health, is to support research into the causes, treatment
and prevention of arthritis and musculoskeletal and skin diseases; the training
of basic and clinical scientists to carry out this research; and the
dissemination of information on research progress in these diseases. For more
information about NIAMS, call the information clearinghouse at (301) 495-4484 or
(877) 22-NIAMS (free call) or visit the NIAMS Web site at
<http://www.niams.nih.gov
The National Institutes of Health (NIH) -- The Nation's Medical Research
Agency -- includes 27 Institutes and Centers and is a component of the U.S.
Department of Health and Human Services. It is the primary federal agency for
conducting and supporting basic, clinical and translational medical research,
and it investigates the causes, treatments, and cures for both common and rare
diseases. For more information about NIH and its programs, visit <www.nih.gov
Muriel Finkel
Amyloidosis Support Groups
Uncle Died of Amyloidosis

Hi Lottie;
Could you pass this on to T.M. as he might be interested. Lynne G./SD
http://search.netscape.com/ns/boomframe.jsp?query=Toronto's+Sick+Children's+Hosp\
ital+Diabetis+Research&page=1&offset=1&result_url=redir?src=websearch&requestId=\
fdf63ef47936ffd2&clickedItemRank=2&userQuery=Toronto%27s+Sick+Children%27s+Hospi\
tal+Diabetis+Research&clickedItemURN=http%3A%2F%2Fwww.sickkids.ca%2Fmediaroom%2F\
custom%2Fdosch_diabetes.asp&invocationType=-&fromPage=NSCPIndex&ampTest=1&remove\
_url=http://www.sickkids.ca/mediaroom/custom/dosch_diabetes.asp
<http://search.netscape.com/ns/boomframe.jsp?query=Toronto%27s+Sick+Children%27s\
+Hospital+Diabetis+Research&page=1&offset=1&result_url=redir%3Fsrc%3Dwebsearch%2\
6requestId%3Dfdf63ef47936ffd2%26clickedItemRank%3D2%26userQuery%3DToronto%2527s%\
2BSick%2BChildren%2527s%2BHospital%2BDiabetis%2BResearch%26clickedItemURN%3Dhttp\
%253A%252F%252Fwww.sickkids.ca%252Fmediaroom%252Fcustom%252Fdosch_diabetes.asp%2\
6invocationType%3D-%26fromPage%3DNSCPIndex%26amp%3BampTest%3D1&remove_url=http%3\
A%2F%2Fwww.sickkids.ca%2Fmediaroom%2Fcustom%2Fdosch_diabetes.asp

Dear Group,
The well-written text below is from
http://www.arthritis-pain-cure.com/article_info.php/articles_id/160
"The food you eat does influence arthritis pain. Some foods will
actually trigger inflammation while others can help renew cartilage.
The battle against arthritis pain can be won at the dinner table by
learning to avoid some foods and adding other foods to the diet.
The first and foremost component of the arthritis diet is to avoid
food with arachidonic acid. Arachidonic acid is a fatty acid that is
found primarily in saturated fats and animal product food including
red meat, pork, poultry, all dairy products with the exception of
nonfat dairy products, and egg yolks. Arachidonic acid causes
production of a dangerous form of prostaglandin, which actually
promotes inflammation.
The second arthritis diet component is to avoid food rich in Omega-6
fatty acid which include safflower, corn and sunflower oils,
margarine and most other kinds of plant oils. Also, avoid all fried
food. Instead add monounsaturated fats to your diet like extra-virgin
olive oil and canola oil.
We've talked about what food to avoid - which seems like just about
everything. Let's talk about what food to eat with an arthritis diet.
For those with degenerative arthritis, adding Omega-3 rich food to
the diet can be very effective in reducing inflammation. Omega-3
fatty acid is found primarily in fatty fish like salmon, herring,
sardines, mackerel and trout. One should have at least three to five
servings of fatty fish per week.
If unable to obtain and consume those quantities of fish, supplement
your diet with omega-3 capsules - approximately 3 capsules per meal.
Be sure to take digestive enzymes along with the capsules. Another
way to consume omega-3 fatty acid is by taking flaxseed oil. The
health food benefits of consuming a tablespoon of flaxseed oil mixed
with two tablespoons of low-fat cottage cheese in your daily diet go
far beyond arthritis.
There's an old natural food remedy that a quart of goats milk daily
will cure arthritis. Substituting goats milk for cows milk in the
diet is said to bring about marvelous results. The goats milk
available at most supermarkets tastes little different from the cows
milk next to it.
Some people are willing to take a chance of dying from disease rather
than make some simple food changes. Unless the food is culturally
repulsive... tastes can be changed. Although goats milk and fish may
seem repulsive to some, being able to live pain-free without any
medication can be the result."

Hi All;
Today there was a press release by Dr Deutch who is a pediatic
professor and researcher at Toronto's Sick Childrens' Hospital.
His work is mostly in Diabetis Type 1 which is very closely related to
MS.He has found a way to totally reverse the diabetis in mice by using
the active component in hot peppers.It seems to work overnight and he
has found that diabetis is caused by a nerve problem in the
pancreas.Human trial start in 3 weeks.I do not expect that you have
heard about this in the U.S. yet so I will keep you posted.I will do a
search for the official press release and if I find it I will forward
it.Seems like this may also work for MS but may take a bit of tinkering.
Lynne G./SD

Hi Cooky! Geoff here.
You wrote:
"My daughter has been using an ionizer
in my grandbaby's room for 2 years and
according to Mercolla it will harm the
lungs and cause allergies (snip)
My question is...has anyone had an
ionizer and now have allergies or lung
problems? Anyone have an opinion on
this? Does anyone know about air
purifiers? Anyone know of any good
items under $250??"
Sorry to be so late chiming in on this. You may recall I've done rather
extensive research in this area over the past several years from previous posts.
What I found is that there is nothing wrong with 'negative ion generators' per
se. The problem is that these are almost only found in two types of devices: #1
a very small fan and filter setup with the ability to clean no more are than in
a space not larger than two closed file drawers; and #2 joined to large
charge-coupled devices that generate ozone (O3) which are touted as ozone
generators.
Ozone is extremely dangerous to breath. It literally destroys lung tissues.
In #1 above, various authorities descended upon the manufacturers and
distributors demanding the devices be removed from the market place for false
advertising. They were simply too small to be of any use and their prices so
inflated as to be highway robbery.
In #2 above, for whatever reason I cannot fathom, authorities continue to all
the manufacturing and distribution of these devices, an obvious health hazard.
Now in all fairness O3 *is* a byproduct of EAC's (electronic air cleaners),
which really *do* work and are made by such names as Honeywell, Trane, et al.
They are also available in both residential and commercial sizes. However, for
them to work safely, the air that is passed through them EAC then needs to flow
through activitated charcoal with changes the O3 to O2. Unfortunately, for
residential purposes they are very expensive (I can personally attest to that)
and even adjusted to emit the lowest amount of O3 possible still generate
dangerous level in an enclosed environment -- like a home or a room. The only
manufacturer that I and my mechanical engineer were able to find that produces a
residential-size charcoal-impregnated filter that can be used down-stream from
the EAC is Purolator. In my home, which has about 4 times the free cubic volume
as most homes due to its open design', this was woefully inadequate and within a
week had turned me asthmatic -- a condition which soon clears after exposure to
the O3 is stopped.
In answer to your last question about something < $250 (the EAC's run about $2K
installed), yes, there *is* a viable option:
#1: Buy the very finest furnace filters available.
Unfortunately, this does not mean washable units.
For some time that has been the 3M Filtrete Ultras
(http://tinyurl.com/nmxeh) available at Home
Depot & Lowe's approx $17/ea (expensive, but
far less than $250) The box says they last up to
3-6 months. My house has two intakes feeding
a central plenum and I find that the one with the
door open the most, sometimes all day, lasts
about 4 months while the other lasts about 8.
#2: CLOSE THE HOUSE. So-called "fresh" air is
anathema to "clean" air. It carries dust, pollens
etc., that you are trying to filter out. Unless your
house is very new and air-tight, it gets adequate
ventilation of new air as a normal routine of life.
If it is very new, or being built, it is worthwhile to
make it as air-tight as possible and incorporate
a fresh air intake-exhaust device. These devices
mount upstream from the filters. They exit some
percentage of 'used' air and intake the same
percentage of 'outside' which is then sent to the
filter before being delivered to the occupants.
These devices work well, but are expensive to
retrofit.
#3: Close and keep closed your windows, doors,
etc., unless necessary to vent steam or such, as
from a bathroom without an exhaust fan.
#4: Caulk -- everywhere (almost) and use canned
expansive foam to ensure the integrity of
penetrations. The added benefit of these measures
is often reduced energy bills.
#5: (maybe) Some HVAC professionals and
mechanical engineers recommend running your
main HVAC fan continuously to assure to most
complete filtration. You may, or may not find
this feasible, advisable or affordable. (It works
but was too expensive for me to continue.)
Beware those who claim smelling ozone is something you get used to then don't
notice anymore. This is bare ignorance at best and an outright lie at worst,
as-is claiming *some* people are "allergic" to ozone.
#1: Prolonged exposure to ozone will kill the lung tissues of all humans. So
much for being "allergic".
#2: Exposure to ozone *also* injures the olfactory nerves. Sure enough, you
don't smell it anymore afterwards, the nerves are dead. That's just like people
who have no teeth get fewer cavities.
HTH
Geoff
Acts 2:39

Dawn, the trigger point is done by my chiropractor. I believe it is
also done by physical therapists trained in this. He uses his fingers
or some instruments that he pushes into my "trigger points" until they
release. He also has an instrument that "jack hammers", a little less
painful than the fingers and other prodding instrument. It is painful,
but works, and gets easier as you get better. Hope this hasn't turned
you off on looking into it, it's done me a world of good. Jan

A few days ago someone gave the web address for a discount canadian pharmacy. I
think it had the words "buy low" in the name. I seem to have deleted that
email. Could the person who sent it please re-send it to me? I would so
appreciate it.
Clara

Erythromycin
(ee rith row MY sin)
E-Mycin, E.E.S. Granules, E.E.S.-200, E.E.S.-400, E.E.S.-400 Filmtab,
Ery-Tab, Eryc, EryPed, Eryped 200, Eryped 400, Erythrocin Stearate
Filmtab, Erythrocot, Ilosone, MY-E, PCE Dispertab, Robimycin
What is the most important information I should know about erythromycin?
* Before taking erythromycin, tell your doctor if you have liver
disease. You may not be able to take erythromycin, or you may require a
dosage adjustment or special tests during treatment.
* Do not take erythromycin with terfenadine (Seldane), astemizole
(Hismanal), cisapride (Propulsid), or pimozide (Orap). Erythromycin may
interact with these medicines and could cause dangerous or
life-threatening heart rhythm disorders.
* Do not crush, chew, or break the extended-release or enteric-coated
tablet. Swallow the pill whole. It is specially made to release medicine
slowly in the body. Breaking the pill would cause too much of the drug
to be released at one time.
* Avoid exposure to sunlight or artificial UV rays (sunlamps or
tanning beds). Erythromycin can make your skin more sensitive to
sunlight and sunburn may result. Use a sunscreen (minimum SPF 15) and
wear protective clothing if you must be out in the sun.
* Antibiotic medicines can cause diarrhea, which may be a sign of a
new infection. If you have diarrhea that is watery or has blood in it,
call your doctor. Do not use any medicine to stop the diarrhea unless
your doctor has told you to.
* Take this medication for as many days as it has been prescribed for
you even if you begin to feel better. Your symptoms may get better
before the infection is completely treated. Erythromycin will not treat
a viral infection such as the common cold or flu.
What is erythromycin?
* Erythromycin is in a group of drugs called macrolide antibiotics.
Erythromycin fights bacteria in the body.
* Erythromycin is used to treat many different types of infections
caused by bacteria.
* Erythromycin may also be used for purposes other than those listed
here.
What should I discuss with my healthcare provider before taking
erythromycin?
* Before taking erythromycin, tell your doctor if you have liver
disease. You may not be able to take erythromycin, or you may require a
dosage adjustment or special tests during treatment.
* FDA pregnancy category B: This medication is not expected to be
harmful to an unborn baby. Tell your doctor if you are pregnant or plan
to become pregnant during treatment.
* Erythromycin passes into breast milk but may not be harmful to a
nursing baby. Erythromycin is generally considered safe for use by
breast-feeding mothers. Do not take this medication without telling your
doctor if you are breast-feeding a baby.
How should I take erythromycin?
* Take erythromycin exactly as it was prescribed for you. Do not take
it in larger doses or for longer than recommended by your doctor.
* Take each dose with a full glass (8 ounces) of water.
* Erythromycin can be taken on an empty stomach or with food or milk.
* Do not crush, chew, or break the extended-release or enteric-coated
tablet. This includes E-Mycin, Eryc, Ery-Tab, and Erythromycin
Delayed-Release Capsules. Swallow the pill whole. It is specially made
to release medicine slowly in the body. Breaking the pill would cause
too much of the drug to be released at one time.
* Take this medication for as many days as it has been prescribed for
you even if you begin to feel better. Your symptoms may get better
before the infection is completely treated. Erythromycin will not treat
a viral infection such as the common cold or flu.
* Store this medication at room temperature away from moisture and
heat.
What happens if I miss a dose?
* Take the missed dose as soon as you remember. If it is almost time
for your next dose, skip the missed dose and take the medicine at the
next regularly scheduled time. Do not take extra medicine to make up the
missed dose.
What happens if I overdose?
* Seek emergency medical attention if you think you have used too much
of this medicine.
* Symptoms of an erythromycin overdose may include nausea, vomiting,
diarrhea, and stomach pain.
What should I avoid while taking erythromycin?
* Do not take erythromycin if you are taking any of the following
medicines:
* terfenadine (Seldane, Seldane-D);
* astemizole (Hismanal);
* cisapride (Propulsid); or
* pimozide (Orap).
* Erythromycin may interact with these medicines and could cause
dangerous or life-threatening heart rhythm disorders.
* Avoid exposure to sunlight or artificial UV rays (sunlamps or
tanning beds). Erythromycin can make your skin more sensitive to
sunlight and sunburn may result. Use a sunscreen (minimum SPF 15) and
wear protective clothing if you must be out in the sun.
* Antibiotic medicines can cause diarrhea, which may be a sign of a
new infection. If you have diarrhea that is watery or has blood in it,
call your doctor. Do not use any medicine to stop the diarrhea unless
your doctor has told you to.
What are the possible side effects of erythromycin?
* Get emergency medical help if you have any of these signs of an
allergic reaction: hives; difficulty breathing; swelling of your face,
lips, tongue, or throat.
* Stop using erythromycin and call your doctor at once if you have any
of these serious side effects:
* chest pain, uneven heartbeats, feeling light-headed or fainting;
* nausea, stomach pain, low fever, lost appetite, dark urine,
clay-colored stools, jaundice (yellowing of the skin or eyes); or
* diarrhea that is watery or bloody.
* Other, less serious side effects may be more likely to occur.
Continue taking erythromycin and talk with your doctor if you have any
of these less serious side effects:
* mild nausea, vomiting, diarrhea, or stomach pain (taking erythromycin
with food or milk may help avoid these effects);
* dizziness, headache, feeling tired;
* vaginal itching or discharge; or
* mild itching or skin rash.
* Side effects other than those listed here may also occur. Talk to
your doctor about any side effect that seems unusual or that is
especially bothersome.
Diane - I was on erythromycin for about 16 months 500mg daily (250 /
250) - I did not have any chest pains. I have DM (dermatomyositis -
affects skin and muscles). I am in remission and off meds now. See the
info below. I did read that erythromycin taken with other certain meds
can cause heart issues. Did you recently refill the RX - check to be
sure dose is correct... I would call dr. sinnott. And ask your son -
why he feels he needs the IV? (make the question open ended and do not
phrase as a yes/no question - so he can say... It made me feel better,
it was so much fun the last time... Etc.)
~Liesl
What other drugs will affect erythromycin?
* Do not take erythromycin with terfenadine (Seldane), astemizole
(Hismanal), cisapride (Propulsid), or pimozide (Orap). Erythromycin may
interact with these medicines and could cause dangerous or
life-threatening heart rhythm disorders.
* Before taking erythromycin, tell your doctor if you are taking
* digoxin (Lanoxin);
* disopyramide (Norpace);
* warfarin (Coumadin);
* theophylline (Theo-Dur, Theobid, and others);
* midazolam (Versed) or triazolam (Halcion);
* ergotamine (Ercaf, Cafergot, Ergostat, Ergomar) or dihydroergotamine
(D.H.E. 45, Migranal);
* carbamazepine (Tegretol), phenytoin (Dilantin), or valproic acid
(Depakote, Depakene);
* tacrolimus (Prograf);
* cyclosporine (Sandimmune, Neoral);
* lovastatin (Mevacor) or simvastatin (Zocor);
* bromocriptine (Parlodel); or
* other antibiotics.
* If you are using any of these drugs, you may not be able to take
erythromycin, or you may need dosage adjustments or special tests during
treatment.
* There may be other drugs not listed that can affect erythromycin.
Tell your doctor about all the prescription and over-the-counter
medications you use. This includes vitamins, minerals, herbal products,
and drugs prescribed by other doctors. Do not start using a new
medication without telling your doctor.
Where can I get more information?
* Your pharmacist has additional information about erythromycin
written for health professionals that you may read.
Message 2
From: "Priest-Dailey, Diane M" dmdailey@...
Date: Fri May 19, 2006 10:36pm(PDT)
Subject: My Little Boy
Hey all,
Jacob is now 6 years old and has been on the AP for a little over a year
after going to see Dr. Sinnott in Iowa. He is taking Erythremycin (is
that spelled correctly?) every day, along with his vitamins, and usually
some flax oil, and/or fish oil.
He complains about his chest hurting so badly he has to lie down. It
has begun to worry me. At first I thought it was just gas, or nerves,
or growing pains, but does anybody have any ideas? Could it be from the
antibiotic? What about the disease. He was never really truly
diagnosed, the doctors all sort of "banged around" a few ideas, from JRA
to Reiter's, to MCTD, to Psoratic Arthritis, or any combination of those
and others. Take your pick.
He was doing so well, and still is, really. He still has occasional
pain (sometimes severe), but with summer coming up it should subside for
a few months at least here soon.
We just went for an I.V. treatment in March and he says he wants to go
back. I don't know if he wants to go for the vacation element of it
(Ida Grove rocks, truly) or if he really believes he needs another I.V.
treatment and it will help his pain.
Any and all thoughts, ideas, suggestions, prayers are, as always,
wanted, hoped for and much appreciated.
Thank you, and God Bless you all.
Love, Diane

Cancer/Arthritis drug linked to rotting jaws
21 May 2006
By DEIDRE MUSSEN
Four New Zealanders have suffered rotting jawbones after taking a
type of drug commonly prescribed to treat osteoporosis and bone cancers.
At least 15 Americans are suing pharmaceutical giant Merck for
developing osteonecrosis (breakdown of bone) in the jaw after taking
bone-strengthening osteoporosis drug Fosamax. While none of the New
Zealand cases are linked to Fosamax, they are from taking the same
class of drugs, bisphosphates, to help prevent bone loss.
The Medicines Adverse Reactions Committee has noted increasing use of
Fosamax meant all doctors, including GPs, needed to be warned about
osteonecrosis.
Pharmac widened access criteria to Fosamax last year, predicting
about 100,000 people would be eligible.
On Friday, the Ministry of Health's pharmaceuticals safety arm,
Medsafe, put an article on osteonecrosis on its website. It also
planned to present a report on the issue to MARC next month.
Internationally, about 2500 cases had been reported but only 100
cases were linked to Fosamax. Most are from intravenous use of
bisphosphates for cancer patients, like the New Zealand cases.
"No medication is risk-free but we need to ensure that the risk is
quantified," Auckland's regional oral service clinical director Clive
Ross said.
Dentists needed to be aware of the risks of treating people taking
Fosamax or other bisphosphates.
"I think our concerns are also getting experience in managing people
who have had something like this happen," he said.
Merck already faces a massive legal battle over arthritis drug Vioxx,
which it was forced to take off the market in 2004 after a study
showed it doubled the risk of heart attacks or strokes if patients
took it for longer than 18 months. More than 30 New Zealanders and
500 Australians have joined about 10,000 Americans in a Vioxx class action.
The four New Zealand patients with rotting jaws were seen at oral
medicine services in Auckland and Wellington in 2004 and last year.
They included an 84-year-old woman with metastatic breast cancer who
died last year, a 64-year-old man with prostate cancer which spread
to his bones, a 51-year-old man with multiple myeloma (a type of bone
marrow cancer) and a 64-year-old woman with multiple myeloma and osteoporosis.
According to an article in the New Zealand Dental Journal published
in March, cases of osteonecrosis began surfacing internationally
about three years ago, despite the drug's use over the past 20 years.
Many were linked to dental extractions or dental surgery, which
occurred in two of the New Zealand cases.
The article, co-authored by Auckland oral medicine specialist, David
Hay, said jaws had a greater blood supply than other bones and a
faster bone tumour rate, so the drug became more highly concentrated
there. The drug could persist in bone up to at least 12 years,
meaning a patient's jaw could rot years after the drug was discontinued.
Last year, Merck issued a warning about Fosamax after it was asked by
United States' Food and Drug Administration.
Data sheets were sent out to New Zealand health professionals last
year warning of the possible risks of using intravenous
bisphosphates. Since then, data sheets for oral bisphosphates, such
as Fosamax, were updated to carry warnings of a rare risk of osteonecrosis.

Has anyone taken Enbrel while on the AP Protocol? I've had a severe
flare-up for a few weeks, now that I started the AP, i wonder if I can
go on the Enbrel too? Didn't want to start takinf Prednisone, I took
myself off gradually couple of years ago. Thank you, Nicole

HI all,
For those of you who knew I had been diagnosed with a lung condition,
obliterative bronchiolitis, stemming ~probably from my scleroderma, the results
are in!!
My lung diffusion at the time of diagnosis was a dismal low of 63. After 8
months of photopheresis, my lung diffusion is now at 89! This ~ with no steroids
or any other medication!
I would be happy to answer any emails or questions if I can. If you have a lung
condition please ask your physician about the treatment, photopheresis. My local
physicians were mostly unaware of this treatment but thankfully I had been in
contact with other patients with autoimmune lung conditions and pursued this
treatment. I receive my photopheresis at the Indianapolis Bone Marrow Treatment
center, IBMT located in St. Francis Hospital, Beech Grove, Indiana.
As chemotherapies go, this is not particularly brutal. You are confined to a bed
with a rather large needle in your arm during the procedure. It takes
approximately 2.5 hours and it is done 2 days in a row, about every 2-3 weeks in
the beginning. There is no nausea, no hair loss, I am tired, that's it!! My
understanding is that the risks are a slight risk of infection at the injection
site. So far, so good here. (you do have to "hold it" during the duration of
treatment :
me to post regarding my treatment and I apologize for the delay. With this
treatment, DRs say it can take up to 6 months to work. I wanted to be absolutely
certain before I put it out there that the photopheresis was working.
Wishing all of you good health,
Hugs,
Debbie G

Hi Debbie! Geoff here.
Outstanding!
For those wondering, this link, http://tinyurl.com/hr7dk, describes the
process and this link, http://tinyurl.com/hkrpr, describes the drug used.
Geoff

"...minocycline may be effective in treating mild rheumatoid
arthritis. ...Doxycycline. ...Tetracycline and clindamycin..."
* * * * * * * * * * * * * * * * * * * * * * * * * * *
MYCOPLASMA REGISTRY REPORTS
for gulf war syndrome & chronic fatigue syndrome
© Sean Dudley & Leslee Dudley 2005. All rights reserved.

Hi Gang! Geoff here.
Sometime back someone on the list wrote that their daughter or some such had
successfully re-grown cartilage using glucosamine or something, along with some
other stuff. I can't find the post in my records. I may have some details
wrong, or misspelled, or not misspelled the right way, but my searches come up
empty.
If you remember this, or if you are the person who posted the comment, and it
was very brief, please respond.
Thanks,
Geoff
Acts 2:39

Hello Everyone !
I just came back from my prenatal physical and I thought I might ask you guys
for advise on pregnancy while having RA. I've been on the Minocin since Feb. of
2004 and I'm doing pretty well. I had RA for about 4 months before I went on
Minocin. My doc. told me I would need to get off the Minocin to prevent
browning of the baby's teeth.
Any info ? or advise for my situation ? Has anyone on the board had RA and been
pregnant at the same time ?
Thanks !
Yesenia

Dear Geoff,
Glucosamine and chondroitin tabs have successfully kept the
arthritis of my ankle at bay for the past twenty years. They are
currently the subject of a large clinical trial in the States.
Regards,
Janice
Subject: Cartilage
Hi Gang! Geoff here.
Sometime back someone on the list wrote that their daughter or some such had
successfully re-grown
cartilage using glucosamine or something, along with some other stuff. I can't
find the post in my
records. I may have some details wrong, or misspelled, or not misspelled the
right way, but my
searches come up empty.
If you remember this, or if you are the person who posted the comment, and it
was very brief, please
respond.
Thanks,
Geoff
Janice Baker
janice.baker@...

Hi everybody
Just when I thought I was on the right track, my medical plan doesn't cover
the Minocin, so Doc gave me Minocycline (generic). Has anyone used it and got
same results?I read in one of the testimonies that you should use only name
brands, so I'm concerned. Thank you in advance. Nicole

Source: National Institutes of Health
Posted: May 18, 2006
Panel Calls For Expanded Regulation Of Vitamins And Minerals
http://www.sciencedaily.com/releases/2006/05/060517185108.htm

Hello Everyone,
Knock on wood, after 16 months of intense knee pain diagnosed as
inflammatory arthritis by a synovial biopsy the knee has improved
all of a sudden. 10 years ago I had a torn meniscus repaired and the
knee got better in a month. 14 months ago I had the same surgery by
the same surgeon and the same knee didn't get better at all. The
biopsy showed intense chronic inflammation --the rheumatologist (who
sent to Stanford Medical School) wanted me to use all the big guns.
I started minocin last October and finally ended up on a dose of
approximately 50 mg 3x a week, thanks to the advice from members on
this list. I also used a Chinese herbal product by Health Concerns
since about December and a lot of fish and evening primrose oils.
Oddly enough, and perhaps someone has an explanation, my knee stopped
hurting exactly the day after I sustained a very bad sprained ankle,
4 weeks ago. Could it have been the bed rest (although I had to put
all my weight on the bad knee for two weeks)? Could the minocin kick
in suddenly?
The surgeon checked my knee this week along with the ankle and noted
that he had never seen my knee so healthy . . . .
I plan to continue the minocin until the toes improve. . . .I wonder
if anyone has had such an sudden cessation of symptoms--does anyone
have an explanation? Could the body's inflammatory response have
been redirected to the foot? You can see that I'm really lacking any
medical expertise!
Thanks,
ew

Hi Everyone,
My name is Gwen Martin and I would like to enlist your support
I have Polymyalgia Rheumatica plus GA and would like to hear from others than
have this disease.
I have had this disease for over 15 months now and currently taking 10 mg
prednisone ( I was up to 65mg in the beginning) plus methotrexate injection once
a week to control it, but I am struggling with it.
Every time I go under 9 mg prednisone back comes the Polymyalgia Rheumatica.
I would be so pleased to hear from others suffering from this disease.
Your advice would be most welcome
Maybe we can help each other
Regards Gwen Martin

Thank you again, Cooky and Harald! Great information...
Melissa

Cooky and Group,
Go to www.google.com and do a search on this term:
+"leaky gut syndrome" +"rheumatoid arthritis"
Here excerpts of just two of the thousands of pages:
http://arthritis.about.com/od/diet/a/leakygut.htm
"Some researchers claim that leaky-gut syndrome, or increased
intestinal permeability, is implicated in dozens of diseases. The
syndrome is the result of the wall of the small intestine being
damaged. A healthy intestine allows only nutrients to pass into the
bloodstream. When the intestine is damaged, larger molecules such as
incompletely digested fats, proteins, starches, and even bacteria,
also permeate the intestinal wall...
One common prescription for leaky-gut syndrome is an
<http://arthritis.about.com/od/diet/a//od/preventionandriskfactors/f/elimination\
diet.htm
diet. A series of urine and blood tests is used to assess food
allergies. Based on the results of the tests, whole categories of
food such as dairy products or wheat products, are eliminated and
added back over time as the patient is monitored for reactions.
Strict elimination diets should be used only under close medical
supervision, otherwise malnutrition can result..."
http://www.afpafitness.com/articles/LEAKGUT4.HTM
"... The leaky gut syndrome is almost always associated with
autoimmune disease and reversing autoimmune disease depends on
healing the lining of the gastrointestinal tract. Any other treatment
is just symptom suppression. An autoimmune disease is defined as one
in which the immune system makes antibodies against its own tissues.
Diseases in this category include lupus, alopecia areata, rheumatoid
arthritis, polymyalgia rheumatica, multiple sclerosis, fibromyalgia,
chronic fatigue syndrome, Sjogren's syndrome, vitiligo, thyroiditis,
vasculitis, Crohn's disease, ulcerative colitis, urticaria (hives),
diabetes and Raynaud's disease...
Due to the enlarged spaces between the cells of the gut wall, larger
than usual protein molecules are absorbed before they have a chance
to be completely broken down as occurs when the intestinal lining is
intact. The immune system starts making antibodies against these
larger molecules because it recognizes them as foreign, invading
substances. The immune system starts treating them as if they had to
be destroyed. Antibodies are made against these proteins derived from
previously harmless foods."
Sincerely, Harald

Hi,
I began writing for a living. You can write for a local newspaper, a
area magazine, internet Ezine's, short stories to submit to such
magazines, poems to submit, even write a novel. Thousands people
these days have begun writing and have been able to make a meager
living, some even a decent living... Write about what you know and
what you like...
michael

I had no knowledge that Ibuprofen would wipe out the kidneys. I have
been on dialysis since the first of the month. Function is coming
back and now off dialysis as of Wed. (Hated It) I'm off dairy
products and it seems to be controlling things for now. I plan to
start AP when full function resumes. Kay

Hi Cooky and Roni
I got RA in September 2004 and it was really bad. I became depressed and my
weight plummeted to 70 kg from 85. I started 100 mg Minocin, 3x a week in
November 2005. The swelling went down and my weight went up to 85 again. I try
to do weights 3x a week but have developed a bit of a paunch. I had my last
predisone shot in February 2005 and also stopped NSAID- Anthrotex.
Are either of you interested in weight training which is supposed to be the
best exercise for RA?
Ken.
aljuarez@... wrote:
rb09322@... writes:
that this SD would be gone and I'd be symptom free. So here I am at 186 and
feeling good, but like you get tired if I push it too much. My life is much,
much fuller than when I was first diagnosed and the doctor just put me on the
"will die" list. So another reason I need this group, to help me retain this
almost remission stage and help me when I think I can do everything with lots of
energy and then wonder why I'm exhausted.
bike so that I can peddle around the neighborhood and get back in shape. Do you
find that a lot of heavy exercise tires you out?

Hey this is Dave, I don't write much I do read all posts though and hope this
group stays together. I have Raynaud's & Scleroderma I have never been on the
AP. I take sular, trental, coumadin and aspirin 2-3 time daily. I was
diagnosed in Jan 2000. Does anyone out there take this medication?
Thanks
Dave

Hi Gang! Geoff here.
**IF** you subscribe to the digest version of the list several things happen:
PROS:
You get 1, or at most 2 emails a day. The emails contains all of that day's
postings, up to about 25. Over 25 or so and they send another. This reduces
volume significantly.
When you click 'Reply' the reply email goes to the list, not the individual.
The digest contains "complete" messages, but in text form. This means they
cannot spread viruses.
Digests are:
Small;
Fast to load; and
Quick to read or scan
You have a better sense of the ebb and flow of the list.
CONS:
If you want to reply to an individual, but not the group, you have to make the
effort intentionally.
When you reply for the group, you have to delete the parts the do not reference
your comments, lest your message include the entire digest.
::
I started by subscribing to individual emails. It was overwhelming. I had no
life and my entire emotional day was spent concentrating on this wretched
disease. I switched to the digest and found it gave me better perspective.
Instead of spending all of my emotional currency on pain, I had some left for
love, joy and the other aspects of life -- in other words, balance. I was also
better able to manage the other areas of my life, including brining some small
contribution to the list.
Food for thought,
Geoff
Acts 2:39

In reply to info on detoxing:
I learned that heavy metal chelation should be done under the
guidance of a skilled naturalpath physician. I had very high mercury
levels and detoxed through Bastyr Univ. in Seattle. If you take
chelators purchased online, it will not help unless you are
supporting you body and bowel with the proper elimination strategy.
Otherwise the toxins will be reabsorbed. DMSA is considered one of
the safest chelators. Before doing this, it is best to have a blood
test which I understand is the gold standard. Hair analysis is only
a first step. My daughter's hair was positive for mercury but her
blood was negative.
My doctor said that the use of Thorne Medi-bulk, 4x a day was almost
as good as a colonic.

Nicole,
Tiredness is one of the symptoms of many arthritic conditions. Once
your other symptoms reduce, such as pain, the tiredness should reduce
also. You are in the prime time window for a Herx reaction. If
you have RA, you should start to get much better in a couple of months.
Harald

Hi Everyone!
Are there really more than 1,700 of us!? Wow! Some of the "oldest
oldies" will remember me, and you know who you are :-) I've decided
to spend 15 or 20 minutes every day (well, maybe each week)
reading/responding to posts on this list. Why? Because Ethel, Chris
and all who posted way back in 1998+ helped me more than they'll ever
know. Like so many on the AP I have my life back, and then some.
In skimming recent messages there are some items to which I'd like to
add my two cents.
1) Yes -- I definitely noticed extreme fatigue within one month of
starting the AP. My dose was 100mg MWF, if I recall. It gets
better........weird, but I almost missed the Herx when it
lessened......I almost felt that the AP was lessened (even though I
knew better...thanks to this group :-)
2) Please keep this group going!!!!!!!!!! 'nuff said :-)
3) Sandra, like you and others, my 21 year-old daughter may be
headed down the rheumatic road. Throughout the winter we noticed her
very purple/white/red toes! Strike one. She also had mycoplasma
pneumonia during high school. Strike two. Her ANA is mildly
elevated. Strike three. The home run will happen when we travel
from Washington State to CA to see Drs. Franco and Lallande this
summer. Appointments are made, blood work has been sent to CA in
advance. We're ready........and she's ready, knowing I've gotten
better and better. I think we'll nip this thing in the bud, and am
so very thankful for this group for leading me to the AP, and now
especially for my daughter.
I'd better go for now. Please, all of you beginners, stay with it!
You will get better!! More updates later. Take care and lots of
gentle hugs, ~Connie

Exercise to the rescue
Exercise has been proposed to have a pain-relieving effect similar to that of a
pharmacological treatment (Bischoff 2003). Inactivity, a consequence of
arthritis, leads to a negative shift in body composition (muscle wasting and
increased body fat percentage), increasing in the risk of hypertension, obesity,
osteoporosis, type 2 diabetes, cardiovascular disease, and cancer of the colon
(ACSM 6th ed. Pg 5 2000). Fitness related problems common to arthritis such as
loss of flexibility, muscle atrophy, weakness, osteoporosis, elevated pain
threshold, depression and fatigue are found to respond favorably to a
low-to-moderate, gradually progressing exercise program (ACSM 1997). Up until
the mid 1970s, most physicians prescribed rest and reduced physical activity
for patients with arthritis (Robenoff 2003). Since this era of physical
inactivity research has shown that patients treated with aerobic exercise and
progressive strength training have shown improvements in strength,
function, and joint symptoms (Roubenoff 2003). It has also been noted that both
aerobic and strength training seem to be equally effective in treating the
symptoms of pain and loss of function in patients with osteoarthritis (Bischoff
2003). Additionally, physical activity is shown to decrease pain, improve
self-efficacy and physical function, and delay disability in people with knee
osteoarthritis (Macera 2003). The 90s were a noteworthy decade for the impact
and use of exercise for the arthritis. Types of exercise tested and found to be
beneficial include low-intensity isokinetic training, low-intensity physical
therapy, intermediate intensity circuit training, and high-intensity strength
training (Roubenoff 2003). In a recent review article entitled Exercise and
Inflammatory Disease, Ronnen Roubenoff M.D. of Tufts University states Almost
any form of exercise, if done carefully, will help to reverse the catabolic
effects of inflammatory disease on muscle, improve
function, and decrease the risk of disability.
The fact is that persons with either OA or RA are able to participate in a
regular exercise program to improve cardiovascular status, muscular fitness,
flexibility, and overall health status (ACSM 1997). Improvements in these
components of fitness observed in persons with arthritis are associated with
improved function, decreased pain and swelling, increase in social and physical
activity in daily life, and lessened depression and anxiety (ACSM 1997).
Exercise prescription
In designing a safe and effective exercise program for clients with arthritis,
the personal trainer and fitness professional must be mindful of many factors.
Exercise programming for clients with arthritis should focus on improvements in
cardiovascular conditioning, improvements in strength, increased flexibility,
increased joint mobility, and joint protection (DiNubile 1997, ACSM 1997).
Arthritis presents many issues in the design of and exercise prescription. Table
2 presents some overall considerations in the design of an exercise program for
persons with arthritis.
Cooky <cookee1@...
I do exercise with Richard Simmons tapes at lease 3 days a week. I have days
where it is all I can do to raise my legs. (I am also takeing anti
depressants that do not work and I have fibro). Then there are days I do the
tape and even go for a walk.
Yes I would like to start weights. I am 59 and skin is sagging because
mucles are wasting. I know also that weights promote more weight loss. For
paunches there is nothing like windsor pilates. I used to do it and now
there is a block somewhere that just won't let me start:)
cooky

North Wales rheumatoid arthritis patients turn to weight training to restore
their muscles People with rheumatoid arthritis in North Wales are to be put
through their paces in the gym - to find out if weight lifting makes them feel
better.
Around 40 RA patients are being recruited to take part in a clinical trial
being run by sports scientists at the School of Sport, Health and Exercise at
the University of Wales in Bangor and rheumatologists at Gwynedd Hospital, and
funded by a £56,000 grant from the Arthritis Research Campaign (arc).
Doctors are hoping to prove that resistance training such as weight lifting
increases the muscle strength in patients with the debilitating joint condition
- which severely reduces muscle mass and strength and worsens their disability.
Half of those taking part will use weights in the university gym twice a week
for 24 weeks, while the other half, known as the control group, will be given
flexibility exercises to be done at home.
"Although RA is well recognised as a joint disease, it also causes severe
reduction of muscle mass and strength in the majority of patients," explained
research team leader, lecturer Dr Andrew Lemmey. "An earlier pilot study we ran
a couple of years ago makes us very confident that those people who do the
resistance training will regain lost muscle, and improve strength and functional
capability." "
Contrary to popular belief, exercising the joints is good for people with all
kinds of arthritis, and does not exacerbate the disease or put undue pressure on
the joints. And Dr Lemmey believes that the resistance training will also give
people a big psychological boost.
"We hope patients will feel more positive and confident in that they are
exercising some power of their bodies for the first time, as opposed to the
disease controlling them, so we will be assessing their depression, mood and
quality of life too," he added.
At the same time, the research team want to find out more about the hormonal
mechanisms within the body that cause muscle wasting in RA. They expect to find
that resistance training redresses the imbalance of hormonal factors in the
body, in particular the levels of anabolic hormones, which are lowered in people
with RA.
If weight training is found to help people with RA, it could have major
implications in the way the disease, which affects around 380,000 people in the
UK, is treated. The trial is expected to start in the New Year.
Released January 2004
© Arthritis Research Campaign 2004 - Registered Charity No. 207711
rb09322@... wrote: Hi Ken,
Weight training? Sounds like I'd need some energy and strength that I don't
have. While I am feeling much better and know that I need to exercise to help me
stay in shape, I don't have a lot of extra energy to lift heavy stuff or do a
lot of streneous exercisee. Hence the thought of the bike, I can peddle at a
slow speed on flat land and slowly increase my distance.
A few weeks ago my husband fell of the ladder and landed on our concrete and
brick patio. Needless to say he was out of commission for awhile. I attempted to
use the lawn mower and cut the grass. Instead of doing small patches, I tried to
do 1/4 acre in one shot, and I was exhausted the next day. We ended up hiring
someone to finish the rest of the property until my husband recovered. So a lot
of extra energy I don't have.....If I ever get to a gym I'll see if I can try a
few weights and see what happens
Thanks for the thought.
Roni

Hello,
I wish I could participate in a directed clinical trial like you
described. I am involved in an Arth-Self Management program organized and
run by two universities.
One part is a graduated exercise program. I started with the lowest
level. On the CD, they emphasize gentleness and not overdoing.
The first time was o.k., but after the second time through 14 of the
very lowest level, my neck is very sore and crunching several days later.
Any recommendations?
Thanks for your thoughts,
Pat

I do not do cleanses or special diets. I do take vitamins and supplements
just to make sure my body is getting everything it needs. I do try to eat
sensibly and try to keep away from processed foods with lots of chemicals. Now
I am a sweet lover. And for the last five years make my own cookies and
such....not that they are all that good for one, but at lease I know they are
free from transfats and preservatives. There are lots of small changes one can
make that will help them eat healthier. Some people have allergies that
affect them, I have never found myself to have any. In fact the only thin