Health Info

This idea comes from Arthritis Consumer Experts in Canada.
Exercise and walking: 10,000 steps.a walking program
Exercise has general benefits such as improved heart and lung function, weight
control, decreased stress and improved self-esteem and self-confidence. For
arthritis, exercise helps to minimize joint pain and stiffness. If you are
considering starting an exercise program, formal or informal, it is important to
speak to a health professional trained in exercise for arthritis.
Walking is a great form of exercise and something we do everyday as a part of
our daily routines. The 10,000 step program encourages people to keep track of
how many steps they walk, using a pedometer, and then increases the number of
steps each week until they get to 10,000.
The 10,000 step lifestyle approach to exercise began in Japan to encourage
people to walk more as a lifestyle change. The program requires a pedometer and
a good comfortable pair of walking shoes. Pedometers are inexpensive and can be
purchased at most sporting goods stores and stores that specialize in running
shoes and clothing.
Pedometers need to be attached to your waist area near the front of the hip and
in a line above the kneecap. It can also be worn at the side or at the back of
the waistband. The important part is the pedometer must be in an upright
position to work properly.
How to use the pedometer:
a.. attach the pedometer to your waistband, set it to zero
b.. walk 20 steps in a row without looking at the pedometer
c.. check the pedometer to see that it reads 20
How to start the 10,000 step program
a.. Wear the pedometer for one week and record your total daily steps. One
week is a good time frame as it should include both work and leisure times.
b.. Total the number of steps for the 7 days and take the average number of
steps/day.
c.. Try to increase the number of steps each week by 500 until you reach
10,000, which is considered an active level of activity. See the activity chart
below.
Activity level: what is your current level of activity?
Number of Steps Activity Level
10,000 + active
4000 - 6000 average
2000 - 4000 inactive
Exercise is as individual as you are, so listen to your body when exercising. If
increasing the number of steps by 500/week is too much, try 250 and increase at
your own pace until you reach the 10,000 steps. Some helpful hints to promote
more walking steps are things like taking a short walk at lunch time, or walk to
the mail box down the street instead of drive and think about other time where
you could walk instead of take the car or public transit.
Keep track of your progress and how you feel each step of the way. If you are
interested in a walking program or walking indoors, get in touch with your local
recreational centre or ask at the local malls. Often the large centers have
informal indoor walking paths that provide a safe walking space that is free
from outdoor elements like the rain and snow.

Has anyone had vertigo and headaches from Plaquenil? If so, how long
did it take to go away after stopping the rx? I stopped about 3 wks
ago and still feel somewhat dizzy. Only other thing I take is
Prednisone 10 mg per day...

OT
I may a be a bit late on this, but those of you in the USA might want to look
this over and contact the appropriate people in your area. It's of no concern
to non-US citizens.
http://www.philly.com/mld/inquirer/business/14147002.htm
Geoff

Does anyone know of a doctor in Ireland who would be prepared to ise
the Antibiotic Protocol?

Dear Group,
My Rheumy thinks the AP is a quack thing to do so I took many of
your advice and asked my GP. She researched it and called me back
telling me it was a 'win win situation'. That it could not harm me
and many acne patients take the same meds for many many years. She
called me in a prescription of 50 mgs of mino. She told me to take
it daily. I spoke up and mentioned that I read many people take it
MWF so she said, 'OK, we'll try that'. She is pretty much going on
what I've researched and what little info she's researched. I'm
thankful for her willingness to do this. I will be her first to
treat with AP. (She actually couldn't believe she hadn't heard of
it).
My question - what is the better dosage? She will support me in
that decision b/c she is new at this too. All she says is if I
start having trouble she'll back me off of it. She is worried about
the herx reaction. However, I'm very mild and haven't had this but
only a little over a year and half. I know you all aren't doctors
but I think you know the basic dosage and what can happen and such.
Any advice would be greatly appreciated.
One last thing.... what about the skin coloring? I remember someone
mentioning blue skin?? Can anyone help me learn about this? And,
will staying on the plaquenil and NSAID effect the antibiotics?
Please advise. Thank you all so much!
Serena

Hi, everyone! Just wanted to share this info with the group. Gentle
Hugs, P.J.
CF-Alliance Newsletter Highlights:
http://cf-alliance.tripod.com/id6.html

I saw Dr. S. in Chattanooga Tn. I have been on Minocin since 10/5 200
mg MWF - he added flagyl 500 mg daily and nizoral 250 mg daily. Not
sure I want to take the flagyl - one side affect is numbness. I do
have a history of numbness in hands/feet. Sometimes it still bothers
me especially during that time of the month. I read that sometimes
the numbness caused by flagyl is irreversable. Any body had this
problems or has this helped anyone.
Thanks Janie

Hi! My name is Chrissy and I have a 7 year old daughter who has been
having problems with her knees and legs. This has been going on for 5
years now and can not get a doctor to investigate further on what it
could be. They keep dismissing it to "growing pains".
She has no swelling (maybe yet) and because there's no swelling they
won't do anything about it. My thinking is why wait till it get's
that far. It's been going on for 5 years and from what I understand
"growing pains" don't last that long and occur at night. Her pain is
behind her knee and upper and lower legs during an activity.
She stops playing to rest and will not join soccer even though she
wants to because of her legs hurting. She did try T-Ball this past
spring but when she was out in the field had to squat down a lot to
take the pressure off. We had a field day a couple of months back and
she did a lot of running & jumping and was a wreck, laying around the
house, complaining her legs hurt, very tired, for the next 3 days
because of it.
I guess my question is, has anybody experienced this with their child,
has JRA been misdiagnosed with "growing pains", should I be pushing
the issue more and how, and what do I ask for as far as testing, exam,
dr, etc.?
Thanks so much for your help,
Chrissy
mmisinonil@...

Sorry to spring this on everyone at the last minute but I am desperate
and I have been busy. I should have posted a while back. Anyway, I
will see my new doc tomorrow morning. Can someone give me a quick
rundown on what to expect (starting dosage and all that)with the AP?
Since I am so new to this concept I haven't had any time to research
it like I should but I feel totally confident that God is leading me
down this path. Otherwise I wouldn't have found you all. I am not
even sure what I am getting myself into but I have decided that I am
no longer going to take the Methotrexate. (my next dose is due
tomorrow) That drug hasn't lowered my RA factor at all since i
started it in Feb. and now all they want to do is add another med. I
dont' want to do that! From the info I got my new doc's partner is
suppose to be familiar with the AP so I hope this is good news for me.
Anyway any help before tomorrow morning would be great. Praying this
will work for me.
Katie

I just wonder what anyone's experience has been with supplemenation
for anemia. I read in the files that it can make matters worse. I
have a hgb of 8.5 and my doc stays after me to supplement. I am not on
ap yet. thanks, laura

Dear group,
This email was forwarded to me, and I am in turn passing it along to you.
Harald
"It's worth it to read all the way to the bottom. Let's hear it for
Costco!! This is just mind-boggling! Make sure you read all the way
past the list of the drugs. The woman that signed below is a budget
analyst out of Federal Washington, DC offices.
Did you ever wonder how much it costs a drug company for the active
ingredient in prescription medications? Some people think it must
cost a lot, since many drugs sell for more than $2.00 per tablet. We
did a search of offshore chemical synthesizers that supply the active
ingredients found in drugs approved by the FDA.
As we have revealed in past issues of life extension, a significant
percentage of drugs sold in the United States contain active
ingredients made in other countries.
In our independent investigation of how much profit drug companies
really make, we obtained the actual price of active ingredients used
in some of the most popular drugs sold in America. The data below
speaks for itself.
Celebrex: 100 mg
Consumer price (100 tablets): $130.27
Cost of general active ingredients: $0.60
Percent markup: 21,712%
Claritin: 10 mg
Consumer price (100 tablets): $215.17
Cost of general active ingredients: $0.71
Percent markup: 30,306%
Keflex: 250 mg
Consumer price (100 tablets): $157.39
Cost of general active ingredients: $1.88
Percent markup: 8,372%
Lipitor: 20 mg
consumer price (100 tablets): $272.37
cost of general active ingredients: $5.80
percent markup: 4,696%
Norvasc: 10 mg
Consumer price (100 tablets): $188.29
Cost of general active ingredients: $0.14
Percent markup: 134,493%
Paxil: 20 mg
Cconsumer price (100 tablets): $220.27
Cost of general active ingredients: $7.60
Percent markup: 2,898%
Prevacid: 30 mg
Consumer price (100 tablets): $44.77
Cost of general active ingredients: $1.01
Percent markup: 34,136%
Prilosec: 20 mg
Consumer price (100 tablets): $360.97
Cost of general active ingredients $0.52
Percent markup: 69,417%
Prozac: 20 mg
Consumer price (100 tablets) : $247.47
Cost of general active ingredients: $0.11
Percent markup: 224,973%
Tenormin: 50 mg
Consumer price (100 tablets): $104.47
Cost of general active ingredients: $0.13
Percent markup: 80,362%
Vasotec: 10 mg
Consumer price (100 tablets): $102.37
Cost of general active ingredients: $0.20
Percent markup: 51,185%
Canax: 1 mg
Consumer price (100 tablets) : $136.79
Cost of general active ingredients: $0.024
Percent markup: 569,958%
Zestril: 20 mg
Consumer price (100 tablets) $89.89
Cost of general active ingredients $3.20
Percent markup: 2,809
Zithromax: 600 mg
Consumer price (100 tablets): $1,482.19
Cost of general active ingredients: $18.78
Percent markup: 7,892%
Zocor: 40 mg
Consumer price (100 tablets): $350.27
Cost of general active ingredients: $8.63
Percent markup: 4,059%
Zoloft: 50 mg
Consumer price: $206.87
Cost of general active ingredients: $1.75
Percent markup: 11,821%
Since the cost of prescription drugs is so outrageous, I thought
everyone should know about this.
Please read the following and pass it on.
It pays to shop around. This helps to solve the mystery as to why
they can afford to put a Walgreen's on every corner.
On Monday night, Steve Wilson, an investigative reporter for Channel
7 News in Detroit, did a story on generic drug price gouging by
pharmacies. He found in his investigation, that some of these generic
drugs were marked up as much as 3,000% or more. Yes, that's not a
typo..... Three thousand percent!
So often, we blame the drug companies for the high cost of drugs, and
usually rightfully so. But in this case, the fault clearly lies with
the pharmacies themselves. For example, if you had to buy a
prescription drug, and bought the name brand, you might pay $100 for
100 pills. The pharmacist might tell you that if you get the generic
equivalent, they would only cost $80, making you think you are
"saving" $20. What the pharmacist is not telling you is that those
100 generic pills may have only cost him $10!
At the end of the report, one of the anchors asked Mr. Wilson whether
or not there were any pharmacies that did not adhere to this
practice, and he said that Costco consistently charged little over
their cost for the generic drugs. I went to the Costco site, where
you can look up any drug, and get its online price. It says that the
in-store prices are consistent with the online prices.
I was appalled. Just to give you one example from my own experience,
I had to use the drug, Compazine, which helps prevent nausea in chemo
patients. I used the generic equivalent, which cost $54.99 for 60
pills at CVS. I checked the price at Costco, and I could have bought
100 pills for $19.89. For 145 of my pain pills, I paid $72.57. I
could have got 150 at Costco for $28.08.
I would like to mention, that although Costco is a "membership" type
store, you do not have to be a member to buy prescriptions there, as
it is a Federally regulated substance. You just tell them at the door
that you wish to use the pharmacy, and they will let you in. This is
true. I went there this past Thursday and asked them.
I am asking each of you to please help me by copying this letter, and
passing it into your own e-mail, and send it to everyone you know
with an e-mail address."
Sharon L. Davis
Budget Analyst
U.S. Department of Commerce
Room 6839
Office ph: 202-482-4458
Office fax: 202-482-5480
Email address: sdavis@...

Hi Everyone,
I was reading that people had a problem with the link or getting on the site to
make a donation. Here are the steps:
Got to google search and type in Joints in Motion
this is the official site for the arthritis foundation. Then where it is written
Run walk or hike, under it you will see ''virtual JIM'' which is those of us
doing our training with Jeff Galloway over the internet through the foundation.
Then scroll down to the '' Disney World Marathon or half marathon''
Then you can search by first and last name for the athelete doing the marathon.
Type in Kathryne Bourgeois and you will land on the page for donations which is
sponsored by the Joints in Motion arthritis foundation.
I spoke with the foundation this morning to see if there is an easier way and
angelic Jno will be letting me know if there is one by the end of the day.
Have a great day!
Kathryne

My mother's coped with lupus for probably 40 years. At 83, she's now running
fevers which completely wipe her out for about a week. when it has subsided,
her memory is also wiped out. Has any one else run across this kind of thing.
thanks
Jan

Thanks guys for your quick respondses. I plan on reading everything
I can get my hands on this week. Just wanted to get all the quick
info I can before morning and I just don't have the time with the
kids to sit and read a lot tonight. I will definitly check out the
site this week. Thank you. I so pray this treatment will work for
me. Honestly I feel that it will.
Katie

Hello everyone! I have been having a lot of problems with my feet and
lower legs for the last 3 months. I have awful swelling, redness and
pain around the ankles and lower legs. I recently developed
lumps/nodules under my skin. They are red and painful when I press on
them. Is this common with scleroderma? I had been doing pretty good
with oral antibiotics for the last couple of years and now I seem to
be falling apart. Any advice you can offer would be helpful. Thank
you!

I posted not too long ago about my daughter having "growing pains" for the last
4-5 years. I did get her back to the doctor and they ran a bunch of blood work
in which everything came back negative except the aldolase. I know aldolase is
an enzyme found throughout the body, particularly in muscles. Has anyone else
come across this or have a better understanding of it?
Also, are there a lot of false negative as far as testing for JRA goes? I know
there are for lymes and was wondering if it was the same for JRA. Both her lyme
titer & western blot came back negative, although I still wonder. I am getting
a copy of her lab reports this week.
Thanks,
Chrissy

Hello,
We just moved to Portland, Oregon and I was wondering whether anyone
on the list has a favorable Dr. in Portland. Thanks very much! ew

Hi,
I'am from Indonesia. I was diagnosed with RA on 2005. I have already
taken therapy with Arava and Methotrexate until now. I feel that both
med doesn't work well because until now I'm still have pain on many
place.
I want to try AP therapy. But I'm still hesitate to start because I
could not find doctor around my place that have knowlegde about RA
very well.
Is it possible to start theraphy without a doctor ?
If I do it myself what is the risk ?
Thank you,

I am DESPERATE to find a doctor that cares about my RA. The pain and
fatigue are unbearable. The Dr. I was seeing just did not seem to
care. He said the fibro was my major problem but I was diagnosed with
that long beforw the RA and I never had this much pain and fatigue. No
matter how I explain my symptoms the docs just seem to ignore it. My
Gp seems to care but does not knoe alot about my diseases or how to
treat. I feel hopeless! Thanks,Kelly

Could someone please give me some ideas on pain and stiffness as I
wait to see a new Dr. on Oct.4. I was on Humira, plaq.,
mtx ,sulfasalazine, and a few others at different times of course and
none seemed to work I am on the desperate side here.I exercise daily
get massages and meditate but I am in some serious pain. Thanks Kelly

Sorry if this seems like a naive question, but it's something I've been
wondering about and haven't yet come across any good reasoning...
How do the traditional non-infectious theories about autoimmune diseases attempt
to explain the localized nature of many of them? If a person's immune system
did indeed decide (for whatever reason) that joint tissue itself was the enemy,
why would it choose to attack only certain joints and not others at any given
time? And how is it that inflamed areas can "spread" from place to place in/on
the body over time if there isn't some (thus far undiscovered) local causative
factor provoking the reaction? One would expect a truly haywire immune system
to see all connective tissue of a certain type as a threat and to attack it all
over the body at once, not just in certain places.
Any ideas or opinions?

Posted by: "asronsr1" asronsr1@... asronsr1
Mon Aug 28, 2006 12:16 am (PST)
Hi,
I'am from Indonesia. I was diagnosed with RA on 2005. I have already
taken therapy with Arava and Methotrexate until now. I feel that both
med doesn't work well because until now I'm still have pain on many
place.
I want to try AP therapy. But I'm still hesitate to start because I
could not find doctor around my place that have knowlegde about RA
very well.
Is it possible to start theraphy without a doctor ?
If I do it myself what is the risk ?
Thank you,

Note: forwarded message attached.

Hi Everyone!
Is anyone out there on just a maintenance dose of clymdamyacin or
Minocin after being on the AP for a long period of time and doing
well? If so how much and how often are you taking the meds? Any left
over symptoms and are your labs normal now? Thanks!

It has been a while since I have written into the group, yet I do read emails
all the time to see how everyone is doing. Many of you have written to me
telling me how how I inspire you and give you hope and I thank all of those who
have written to me. I do my best to educate and help those in need every single
day.
I know many of you have read my story over the years and how I now am a doctor
in research for degenerative diseases. I enjoy my work immensely and have great
conversations among my collegues at the New York Academy of Sciences and the
International Institute of Clinical Nutrition in London and Mexico.
I have now come to a point in my life that I needed a new personal challenge and
something that I really believe that I have to do. I have registered with the
American Arthritis Society Joints in Motion program to do the Walt Disney World
Marathon. Yup....little old me that was dying many years ago. LOL I am
dedicating this marathon to all of you who are there helping others each an
every day through the worst and best moments and to all of you who are still
suffering from these degenerative diseases.
I do believe that working hard and helping different organizations that we will
find the right treatments and prevent disease over the years.
If any of you wuld like to join the marathon or donate, you can go to this link:
http://virtualjimdisney07.kintera.org/faf/donorReg/donorPledge.asp?ievent=159730\
&lis=0&kntae159730=E080AC2F5C464F3D873D1FAD806028D8
Have a great weekend!!!
Kathryne Bourgeois, DrSc, MSc, BSc

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Chris,
FWIW, I miss the 'reply to group' setting. If you get the digest the only reply
now is: "No Reply" and there is no reply email address. This setup requires
digest users to address replies, or they go to the bit bucket.
Geoff
Acts 2:39

Caroline, I am emailing you with some suggestions. Jan

Hello everyone,
I am very interested in this discussion. Until after I was diagnosed in
1998 with RA I was selling my plasma for a high price at NABI's, a plasma
center. I had anti-d the factor they build Rhogram with. My titer was so
high, 32,000, they called my plasma "liquid gold". Sometimes they shipped
it FedX to Florida to bring up the average in a case of plasma they were
shipping to Bayer.
I quit selling my plasma after I came to believe RA is caused by a bacteria.
Even though I needed the money I could not take the chance that I would
cause another person to catch what I had.
However, in the years before that I may have infected a lot of young women.
There is also the chance that I caught the RA at NABI's because I let them
inject rh positive blood into me in order to boost my anti-d titer.
Denise Jolly
503 307 3407
You can order Avon online now
http://www.youravon.com/djolly

Have you seen an Occupational Therapist? They are the ones who work with
hands and they can help you to preserve joint function. I have difficulty
writing and typing but I continue to knit and crochet, read too.
HTH
Denise
Hi,
Welcome to the list, Libby. I see you do counted cross stitch. Have you
had any corrective surgery to your hands, or have they not been damaged by
the RA? My hands are also really becoming a problem. I have to pick up
everything with both hands and it is getting hard to type and write. I am
wondering what can be done. My fingers go to the side a lot.
Thanks,
Gloria
--
No virus found in this outgoing message.
Checked by AVG Free Edition.
Version: 7.1.394 / Virus Database: 268.10.8/413 - Release Date: 8/8/2006

Hey Everyone -- Friends Old and New,
Just got back from my daughter's appointment with Dr. Lallande at the Arthritis
Center of Riverside (California). Some of you may remember that I've had DM for
the past 10 years (and doing very well on the AP) and I recently posted that my
21-year-old daughter is showing signs of rheumatic disease with a low-positive
ANA plus Raynaud's plus a low-positive Mycoplasma antibody report.
Even though I live 1000 miles away I've been a patient of Dr. Franco's for the
past eight years and was a bit disappointed that he'd be out of town for my
daughter's July 17/18 appointments. (New patients are seen on two
days.......each appointment lasts at least an hour, plus any additional
labs/x-rays......please don't be in a hurry as the average wait time can be
long, but Dr. Franco and Dr. Lallande will give YOU all the time you need, too.)
As for not being able to see Dr. Franco due to vacation, I didn't need to worry
-- Dr. Lallande is very competent, capable, personable and AWESOME! He very
patiently explained to my daughter that she is in very good health...but wants
to watch very carefully her lab results for the next year(s). He took an entire
hour to go over her blood tests and reaffirm that she may be headed towards
rheumatic disease, but that he feels he can nip it in the very earliest bud, if
needed.
Per orders, daughter and I will send our blood for testing to Drs.
Franco/Lallande every three months until we both return to CA in April. In the
meantime, Dr. Lallande is standing by, ready to prescribe Zithromax or Biaxin
for my daughter at the first sign of fatigue or increased ANA, or CRP, or
mycoplasma values. All are currently at low-positive. I'll keep you posted --
as for me, I feel fine, but since I've been on Minocin for most of the past
eight years, my labs were leaning towards "drug induced Lupus" so Dr. Franco
switched my Minocin to Doxycycline almost a year ago........and all labs are
gradually returning to normal ranges......albeit slowly in some cases.
Any of you who are struggling to find a rheumatologist who knows the AP inside
and out, and who recognizes that everyone has their tolerance, might want to do
all it takes to make an appointment to see Dr. Franco and Dr. Lallande in
Riverside, CA. People come from all over the world to see these guys at
www.thearthritiscenter.com. They have given me my life back and I like it!
Take care,
~Connie

Laura, my AP doctor told me that anemia is often part of some of these
diseases. I have RA, and after several months on AP, I am no longer
anemic. Never took supplements for anemia. Jan

Hi, I missed the posts on knee replacement surgery, though I have had both knees
successfully replaced which has given me my mobility back and reduced knee pain
to 0, for which I am very greatful.
The first port of call for anything for me is physio and therapy and this has
prolonged the time before I resorted to surgery.
In April of this year I had reconstructive surgery on my right hand which has
also been successful. I had severe swan neck deformity as well as the tendons
slipping off the knuckle joints and thumb very painful. I can now hold things
without the fear of dropping them and it is so much less painful and more
functional. I was surprised at the 7 weeks for which I wasn't able to use it at
all though it paid off in the end. If I can be of any further help feel free to
email me.
Julie
Townsville - Queensland - Australia

So I go to my new rheumy today. Well he says I don't have RA per say
but I have mixed connective tissue disease. Ok so what does that mean
for the AP? Every time I turn around they are telling me something
different. I could just cry and don't know what to think anymore. I
just want to throw all the meds in the trash and wait until I die. He
agreed to let me off the Methotrexate since I think it isnt working
but he wants to start me on Plaquenil. He isn't big on the AP. Just
when I think I have RA now I am told all this. I don't know what to
do now.
Katie

Hey Group,
I have a few questions. I've been doing so good all summer with
only mild symptoms and now it seems I'm in a flare. I've been
noticing pain in my feet - the bottom of my feet (this is new pain)
and my calf muscle is sore and feels like it could cramp at
anytime. Also, I've had cramps in my toes. Anyone ever have that?
Forgive me for bringing up a personal matter but I'm pretty
desperate for advice. My major concern is that during menses I go
into a flare and hurt all over. It's so much worse that week
compared to the rest of the month. It's like night and day. I just
want to know if anyone has an idea about why or how to treat it
during that time.
I'm not on the AP yet. However, I'm gaining ground (not with my
rheumy but with my GP). She never heard of it so when I told her
about Dr. Brown, she immediately started searching the web (while I
was in the exam room with her) and said she'll research and give me
a call in a week or so. She was amazed that AP wasn't taught after
reading about it for just a few minutes. She also said, "That's
standard treatment for acne sometimes for life so why would it hurt
someone to try it for arthritis?". She sure was amazed that she
hadn't heard about it. So, I'm encouraged that I'll get help from
her.
Anyone with answers for me, I would really appreciate it. Oh, one
last question, if my blood work is done during menses, will it show
something that it normally wouldn't??? Anyone heard of that?
Thanks for your support!
Serena

Hi,
About the fatigue you report, I had many emails from women who also
felt exhausted taking minocin. One woman had sleep disturbances,
another heart palpitations, increased heat, etc. I experienced a
lot of fatigue and brain fog on minocin. I'm doing better on a
lower dose. It's amazing, I can actually walk around fairly normally
now--it really helped the arthritis in my knee. I appreciate all the
encouragement to stick with the program. The alternatives are
unappetizing! e

Hi everyone! My 27 yr old daughter (who lives across the country from
me) is currently going thru all the testing to determine which kind of
scleroderma she has. She has had a skin biopsy which confirmed the
scleroderma on her forearm (which is now on the other arm also). She
is currently being seen by the gastronologist (sp) and was told
yesterday that she had symptons of Crohns but the fact that they
appeared after her rash, it's probably scleroderma. He also said
Crohns and scleroderma are from the same family. (this diagnosis was
made following an endoscopy, colonoscopy,stomach emptying test,
biopsies and blood work) They will be taking an xray next week to
determine how far advanced, but believe it to be a mild case and
prescrided Pentasa. She will have her first rheum. appointment next
week, at which time they will probably schedule a deep tissue test. My
question is, is it possible to have localized scleroderma with stomach
involvement only, or because it is in her lower intestine, does that
mean it will eventually attack other organs too? Which, I understand,
is a different type of scleroderma.

You guys are all great. I will be fine and I will get the Minocin
sooner or later. I was really freaking out yesterday but feel
better this morning. We did stop the Methotrexate and I am going to
stay off of that for a few weeks before trying the Plaquenil. I
really want to let my system clear out for a bit. I am also going
to concentrate on my diet. I have an elimination diet I will start
so that I can pin point which foods bother my condition. Those
foods I will stay away from. Plaquenil I will give a shot and pray
it doesn't cause me any problems however, the AP I will find a way
to try. I just have to know if it will work for me.
This group is great and so informative but most of all just having
people to talk to about something that most people don't understand
is really important to me. My husband doesn't understand why I
don't just "move forward and not worry about it". I am still newly
diagnosed with whatever label they want to give (or should I say
keep changing) and my counselor said I am in a grieving stage. DUH
just wish my hubby would understand that and let me get through it
without getting mad. Sorry to vent the personal stuff but that is
part of why I am feeling so bad.
I pray everyone a painfree and joyful day.
Katie

Joint Flexibility May Offer Insight Into Chronic Fatigue Syndrome
Painful condition affects four in 1,000 adults, researchers say
http://www.healthcentral.com/newsdetail/408/534241.html

Harald,
Thank you so much for the info...I do notice I feel better when I cut
out the "bad" foods from my diet. I do still eat chicken and tofu
most days (for protein), but am wondering if I need to do the
elimination diet to find out more about food allergies?
Also I've read about "leaky gut"...anyone out there healed themselves
with this?
I'm seeing a whole foods nutritionist this week and am hoping she can
help me with diet and testing.
Thanks again for your help.
Melissa

Doctor in Wisconsin
Posted by: "Kelly" dadskel@... mamakel66
Mon Aug 28, 2006 5:26 am (PST)
I am DESPERATE to find a doctor that cares about my RA. The pain and
fatigue are unbearable. The Dr. I was seeing just did not seem to
care. He said the fibro was my major problem but I was diagnosed with
that long beforw the RA and I never had this much pain and fatigue. No
matter how I explain my symptoms the docs just seem to ignore it. My
Gp seems to care but does not knoe alot about my diseases or how to
treat. I feel hopeless! Thanks,Kelly

Barley, Oats, Wheat and Rye contain gluten. Rice, Millet and quinoa
are some good substitutes. I've been off gluten and dairy for years
but still have pain. I started drinking coffee again some months ago
but my hands started hurting. So I switched to decaf. green tea and
about 2 months later my hands started hurting again. Since I stopped
drinking it my hands have gotten better. It has only 5 mgs of
caffiene in it. laura

The CF-Alliance Autumn 2006 Newsletter Highlights
*Here are 3 articles from the upcoming issue:
http://cf-alliance.tripod.com/id6.html
1. Promoting Recovery: The Fifty Percent Solution
2. Is It Sadness Or Depression?
3. Seeking Better Treatment for Lupus

This is finally something that really helped me and i only wish i had
listened earlier. I'm amazed at all the documentation worldwide also.
www.tni.com/specials
id#1837068
I stumbled across it and really got interested after going to
www.nonihealthinfo.com

I ofcourse am not a doctor, and also not overwhelmingly experienced
with this as my daughter was only Diagnosed with Scleroderma (limited
systemic) in late May '05. But I have been thrown into the deep end
and have learned ALOT!
From what you describe and all I have read, it does not sound like your
daughter has only the Localized form of Scleroderma. Here is a quote
from another website:
"The localized forms are morphea and linear. They affect only the skin
(and sometimes the underlying tissues) but do not affect the internal
organs, or reduce one's life expectancy in any way."
The way I see it, if the GI issues are related to the Sclero, then it
is not localized Sclero, but maybe the GI issues are unrelated and the
Sclero is only the Localized type, in which that is very good news
according to the discription on the website quoted above.
This website has VERY comprehensive information on all of the types of
Scleorderma and the various symptoms, here is a link to a section on GI
issues, but I highly encourage you to look over the entire site, it is
very educational, scary, but educational. Knowledge is power!
http://www.sclero.org/medical/symptoms/gi/a-to-z.html
As far as treatment goes, whether it be Localized or Systemic, my short
term experience tells me, GO FOR THE AP TREATMENT!
My daughter was failing fast until July 5th when she saw Dr. T at
Harvard in Boston, she started the AP that day and most of her symptoms
were completely gone in three weeks. All that remains is minor
Raynaud's symptoms. She is doing great now, back to all of her regular
activities, which among other things includes a strenuous competitive
swimming training program of 20+ hours per week. She pretty much has
energy to burn.
Good luck finding the right course to heal your daughter.
Cheryl Ferguson

Hey Everyone!
I have not posted in a couple of years but read your posts daily. I
have been dealing with my mother's Alzheimer's Disease and taking care of my
first grandbaby-Addie -who was born with a birth defect- Choanal Atresia- only
one nasal passage.
I have been on Humira for over 3 years with a good remission. I know
how everyone in our group feels about Humira/Embrel ( me, too!) but it was my
last hope. Because I suffered with a stroke at the onset of AP and Atrophy
Gastritis I am sorry to say that I just could not tolerate the antibiotics. I
tried the IV's with some success after going to see Dr. Franco several times
who is just great! Not being able to take anything oral including supplements
really screwed me up with our protocol. I feel that AP is the #1 treatment
for RA and I have helped many people get on this program with great success.
And Ethel - you are still the smartest lady I have ever met!
I now have another huge problem to deal with since May- a partially
slipped disk in the Cervical 6-7 area. I took care of Mom in hospital around
the clock and had been taking care of Addie all week while my daughter worked
and she was weighing 18 lbs when this all started. I have had 3 rounds of
depo-medrol injections =180 mg in a 6 week period by a neurosurgeon in that
area.
My left underarm arm , elbow, and wrist throbs with the palm of my hand
starting now to get numb periodically. No neck pain, HA, or stiffness at all.
The
doc says it is all referred pain that goes down towards the scapula but it
feels awful. Sitting up is the worse- standing is the the best. He says I will
not do well with the surgery and will go out of remission most likely. And I
have all sorts of other problems due to auto-immune disease and stroke- and can
not tolerate anesthesia.
I remember several of you having neck surgery- especially Linda. If
anyone of you can tell me your experiences or opinions I would be so
appreciative. I have always heard never to get a fusion in the neck area or
have a
nerve severed- more pain. And you guys are the most knowledgeable around!
Thank You, Thank You!
Carol* (from Jacksonville, FL)

Hi Peggy
I've been advised that regular acidolphillus gets killed off by
antibiotics and that one should use sacromyces boulardis. This is an
approximate spelling, but you can search on Jarrow--they make it.
Apparently this doesn't die from the antibiotics. Maybe this will
help the yeast. I tend to get it on the tongue. . . .(this is
getting personal!).
As for cllndamycin (sp?) that stuff did a major number on my
intestines when taken for a a sinus infection some years ago. I'll
spare the details!
I would be interested to know the doxy dose you used. I'm trying to
use mino regularly but it really makes me feel bad, even at 50 mg.
Excessive heat and poorer sleep are the main problems. I'm
wondering if doxy is generally better tolerated?? I thought I'd
start at 50 mg. 3x a week. Any ideas out there among the group
members?
Good luck. By the way, we are moving to Portland Monday, so if
anyone has a favorite dr. there I'd be glad to know. Thanks!
ew

Is your RA becoming a pain literally? Has rheumatoid arthritis taken control
of your life? If
so, self-management of RA could give you your life back. Based on research by
the Missouri
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this research evaluation of a proven self-management program seeks to empower
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relationships, and fatigue
are just a few of the important issues that RAHelp.org will address in this
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health professionals provide instruction and personalized one-on-one support in
addition to
online discussions with other people who have arthritis. Log onto
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discover how you can put your life back into your own hands and contribute to an
important
research project that could enhance the future treatment of arthritis.

Hi Daniel! Geoff here.
You wrote:
"Clearly their first and main priority is business, the patients welfare comes a
distant second. ... They are all about making money."
Medicine is a business, not a charity. In the USA, the medical "business" is
controlled by the pharmaceutical industry & populated by Allopaths (MD's) who
are trained in pharmaceutical-backed medical schools and have legislated
protections provided by pharmaceutical-controlled, influenced and enhancing
legislation.
That is a basic fact. It is not speculation; it is not wild-eyed opinion; it is
not a WAG. We do NOT enjoy a free market system in medical care. The first
step to that would be the elimination of insurance and utter chaos would result,
so addicted are we to the idea that "someone else should pay for *my* problem."
"If" you want pharmaceutical aid, you are going to be forced by law to obtain
the services of a licensed Allopath, or allopathically controlled complimentary
practitioner such as an Osteopath (DO), Dentist (DDS), etc. You will be forced
to attend their time, their facility and their ritual, which includes insurance
whether or not the insurance pays the bill. In order to get the "insurance
price" you will need insurance, paying or not, otherwise you will pay the
"uninsured price", normally 35% to 50% more.
The unfortunate fact of life is that medical services have "always" been to the
benefit of the wealthy, even to ancient Greece. Whoever holds the gold,
controls the market.
Geoff
Acts 2:39

Hi Everyone,
I've posted a couple of updates on my daughter's progress on AP on the
Road Back BB over the last few weeks. I'm sure many of you have
already seen them there but I thought it might be good to post here
too. My daughter is now 16yo, diagnosed with (a high ESR, CRP, severe
erosions, nodules) rf+, ana+, Polyarticular-JRA and HLA-B27+
Spondyloarthropathy at age 14 in July 2004. The disease had been
active for at least a year prior to dx. She did not take MTX or TNF
drugs before starting AP. Started AP in Dec 2004 (Zithromax first,
added Minocin).
She's had an amazing recovery on AP to say the least. (No more pain or
swelling. Nodules completely gone. Damaged joints look & work great
again.) She also had quite an unusual summer experience and we think
her story might give some encouragement & maybe even open up the
possibility of remission on AP to more kids with JRA. So here it is.
From July 15, 2006: JRA - smiles on her journey back
I thought this update might give a boost to everyone on a road back
(especially Cheryl's Jess who is on a road very much like Rachel).
So it was 2004 and she was at her first Olympic trials (though at
14yrs probably not a real contender) and the pain in her feet, wrists
and hands were becoming an ever bigger problem. Then July 2004 at US
Nationals, she took to crutches between competitions. A world
reknowned pediatric rheumatology center said she was no longer an
athlete and would be in a wheelchair by summer 2005. She started high
school burdened with a grim prognosis and with directions to scale
down her dreams and goals... not just athletic ones but academic,
social, everyday life. We were also told to plan on attending the
annual AJOA conferences.
We found the Road Back in Dec 2004 and started a remarkable journey.
Simple things like the ability to walk between classes and take the
stairs instead of a handicapped elevator returned by year end. She
took the toughest classes and made A's. Had a very busy life with many
extracurriculars. By April 2005, she had not only returned to
competition but had requalified for nationals. She was definitely on
the road back. We did not feel the need to go to the AJOA in 2005.
I posted 'JRA and AP a year later' in Jan 2006. That was when we
realized that this must be a remission. Since then, the road has only
become smoother. She doesn't take Minocin 200mg everyday but now takes
it every other day. She doesn't hurt if NSAIDs are skipped a day or
two. But since she's in continuous athletic training, she is careful
to prevent and treat any signs of inflammation from injury or overuse.
She is ever so careful about her diet, supplements and vitamins,
exercise and training. The cartilage in the damaged joints has
regenerated, range of motion has returned to normal, no more pain.
(But she can still predict an approaching storm better than the
Weather channel with her joints!)
So she boarded a plane for Atlanta today and we noted that the AJOA
conference is being held there this week. I wondered how many JRA kids
she might walk past in baggage claim. But this was a day for smiles
instead of a time to attend a conference & learn how to manage a
lifetime of disability. Because as the AJOA conference winds down,
across town another group is gearing up. It's time to train for the
world championships with the Olympic coach, 2004 medalists and
national team members from around the world. Now, the dream for 2008
may be impossible and even meeting Jess & Cheryl at the 2012 games a
very long shot, but for today, right now, there's one happy kid who's
journey has taken her to a place where she's on par with the best.
She's an athlete again.
From July 28, 2006: JRA - Doctor said 'miracle'
Hi Everyone,
A couple of weeks ago I posted our update in 'JRA - smiles on her
journey back'. Rach made the trip to Atlanta (not to attend the
juvenile arthritis conference) but to 'endure' intensive athletic
training (aka. world championship bootcamp).
So did she survive? Amazingly, yes! The first few days I heard from
her several times a day... it's awful!...I'll never survive!... my
feet are killing me! Do you think I'm flaring?... can I just quit?...
She didn't quit! And when I didn't hear back from her for a few more
days, I worried.
But then she finally called late one night. She was hiking back to the
dorms with teammates having just walked miles to a store for midnight
snacks. Sorry she hadn't called. Up at 6am and nonstop training until
dinner at 7pm. The food is terrible. Evenings they have a few hours to
go places (by foot). I ask - What about your plantar fascitis? What
about your knee, fingers, wrist, elbows? What's flaring?! Oh, I feel
fine now. A few days into the most physically demanding thing she ever
tried, all the aches & pains went away. Something about getting used
to the training & stretching everything out... No pain. No swelling.
No JRA flares. She was doing fingertip pushups again. Walking 5-6
miles a night for fun after a grueling day of practice.
She said the experience had helped her make peace with her Olympic
dream and the past disappointments from JRA's setbacks. She trained
with the best athletes and coaches in the world. She geared up
everyday next to her idol (an Olympic medalist) & best yet, when she
scored the win in a hotly contested dodgeball tournament her Olympic
idol led the rest of the team in a rush to high five & jump on her in
a screaming heap. One day she realized that the Russian national coach
was giving her extra attention, acknowledging her performance and even
liked her. She said that she discovered that she was finally 'back'.
Able to compete without a JRA handicap. The decision to pursue the
Olympics or not is no longer determined by her disease. It will be the
normal questions of what sacrifices she is willing to make & how much
of her life gets put on hold to get to 2012. She's not ready to make
that decision yet. For now, she'll get ready for this year's
competition & look forward to college recruiting next.
It just so happens that Rach's lifelong pediatrician is my close
friend (& her sister's godmother). She is also past president of a
medical examiner's board, the longest sitting member on the same
board, is on the board of 2 (or 3) medical schools, sits on this, that
& the other committees, is overall a very influential physician (met
with the governor one night, then the next day was interviewing the
candidate for medical director of the group of 3 children's hospitals
for a certain city). She doesn't profess to know rheumatology but
after treating kids in one of the busiest practices I know of for 30
years, I think she has seen her share of JRA.
Rach wanted to drop in for a surprise visit before coming home. She
was shocked! Overwhelmed maybe? Taken aback? She was so happy (tears
in her eyes happy)! She said over & over "It's a miracle! You're my
miracle child! Who would ever believe it but you're living proof!" She
looked at the thumb that had regrown cartilage & healed & shook her
head & said again that she was all the evidence she needed. We talked
some about AP & Dr. McPherson Brown (who she already knew about) & the
probable relationship of the glucosamine, chondroitin, MSM, etc to the
new cartilage growth. She said Rach's recovery was beyond anything she
had ever thought possible. She had prayed everyday for Rach, worried
and wondered how long she'd be able to walk, knew the prognosis was
bad. She acknowledged that the traditional treatment options are
dangerous and that minocycline is safe & well, just so simple. She
asked for more info on AP, current protocols, studies, doctors who
know it, case histories.
I asked her why so many docs are still hostile to alternatives in the
face of mounting evidence in their favor. She said that a good doctor
should be open to safer, alternative treatments and be grateful to see
living proof of its benefit. Sad to say, she knows way too many
colleagues who are blind on that point. Too many unduly influenced by
big pharma marketing & incentives, grants or just fear of deviating
from the status quo. There's hope that there will be change &
encouraged by the new medical specialty in Complementary & Alternative
Medicine at a few medical schools. But she has seen Rach and she's all
the proof she needs to believe there's hope for a better treatment for
JRA.
I know some of you have asked that I post Rach's story more
prominently on the site. I've talked to her about it and she's not
quite ready to 'go public' but is getting there. She has kept her JRA
secret from most of the people in her sport. She doesn't want the
disease to have power over her in that refuge. Only her personal coach
and a teammate/doc knows the details. As her confidence in beating the
disease growing, she's getting closer to putting a face on her story.

I am sure this question has been asked multiple times so I apologize
in advance for the repeat. Looking for a reputable online Canadian
pharmacy to order Provigil and possibly Minocin if that is allowed
still. Also curious to know if any of you that use or have used
Provigil know of any non-drug supplements that offer the same energy
boost. I would appreciate any help.
Thanks,
Kelli

Dear Ethel, Jean and others,
I certainly meant no disrespect by the term "ya" !
I "reckon" my years of living in the south- and my southern roots, just
burst forth in my excitement. That there might actually be additional
answers was exciting news for me.
To me, "ya" is a term of acceptance- not disrespect. However, when in
Rome... so I will try to not use Southern terms again. Hopefully you will
forgive any unacceptable verbiage in the past that I inadvertently used.
Also, due to toxic chemical poisoning/ exposure, I lost much of my
ability to speak, and was aphasic for an awful long time. Still have lapses
and suffer from Foreign Accent Syndrome, so I do not always communicate
effectively or correctly. I usually have to proof and correct items before
sending, and I was to excited to do that, I will try and remember to be more
careful in the future....
My husband has has RA for several years yet much of what I am reading here
is totally new to me. There is a pretty steep learning curve. I try and
visit each link and at least skim each referenced article trying to get an
understanding of all of this. I may not have been as polite as I should have
been and so, once again, I apologize.
I am looking forward to learning about the exciting potential that I see
shared here. Thank you to all who share.
Karolyn

Hello,
If you have already covered this treatment for a blood clot, I apologize.
A superficial clot may be treated differently from a deep vein
thrombosis (DVT). The latter are usually the most dangerous, I believe.
I had one and was treated in the hospital with heperin and coumadin
(sp.?). They can move to the lungs. Surgery is one of the risk factors for
them. It is not uncommon to take blood thinning medications for several
months after.
It was a somewhat daunting experience for me. If I can help, please
write me.
Pat

My doctor is afraid to do antibiotics because they are "hanging" a dr.
in North Carolina for that. Does anyone know of one in SC or Ga?
Does anyone have a comment on namebrand verses generic? I can't
believe how much name brand costs. I thought it would be cheap!
Thanks, laura in South Carolina

Hi Everyone,
I'm a polymyositis person, so haven't paid much attention to joint
information... Having A LOT of joint pain know- harsh stabbing pains in
shoulders,
elbows, hands. Does aspirin or other over the counter meds work? I hate to go to
another prescription right now. Does anything topical penetrate and help with
the pain?
Thanks,
Em

Harold,
With PMR, do your joints hurt too? My muscles do ache often but I
have joint pain as well. And, my joints hurt symetrically. Any
input would help. I am planning to research PMR but I like hearing
from someone that actually 'knows' about it. Thanks for your help.
Serena

Cooky,
My mistake: the filter packages advise replacing every 2-3 months, not 4-6. My
experiences are much better.
Geoff

Delores,
Thanks for the encouragement. I appreciate it. I hate to hear
about your added problems.... like one disease isn't bad enough.
However, it sounds like you love life and continue to live a full
one. I haven't started the AP yet b/c I think the doctor may run
tests first - just for the records. But within a few weeks, I'll be
on it. I'll start with the 50 mgs MWF - if not everyday and hope
for the best. Thanks for the advice.... I plan to order the
probiotics from Dr. Mercola for my gut. I already take his Krill
Oil. I'll keep you posted. Thanks again for what all you told
me... it's nice to have input from users - not doctors that haven't
used the AP. Have a great day!
Serena

HiGroup does anyone know the name of a medicine for dry mouth from R.A.?
My rheumy suggested Eskovac or something like that but when I read the
prescribing information it said not to be taken by anyone who takes
Toprol XL, for high blood pressure, which I take. I use that Oasis
mouthwash but it doesn't last long .
Also can someone tell me the diet to avoid so my RA doesn't get worse.
Sincerely, Bunny

I've been taking metho for 7+ years now orally with no problems
whatsoever. Liver enzymes have stayed the same. The only thing I've
had to monitor is my wbc, which at times would drop into the low
3000's, but is now back up around 5500, so go figure. I take
20mg/week, which equates to 8 tabs once a week. Pretty cheap - about
$30/month, but with insurance my cost is only about $10. If you don't
have insurance, you might ask your doctor about the liquid form that
you can actually swallow, which he told me was much cheaper. I know
one of the former group members here takes it that way with no problems.
Mark

HI Bonnie, I posted originally asking if anyone had used the Acupeds for
detox..and where I got them...and my success and how I felt using them...so
not sure if you are requesting this info again...but here it is
www.wholelifefocus.com
They are called acupeds and the number is 1-800-825-9066
The info re the ingredients is all listed on their website..hope this helps.
I am happy that so many have ordered them and are loving them. The Acupeds
really boosted my energy level..
Debbie

Hi Geoff,
For some reason my email the first time to you was sent back to me.
I just wanted to say thank you for the note about ionizers. I promptly
turned mine off (even tho it says ionizer guard on it). I just hope my
daughter gets the message!
hugs,
cooky

How did you know you had those lung problems?
Katie

Dear Group,
I have been on the AP since August and I am in the middle of a herx.
The back side of the herx that is! Ended up having to go on a 6-day
cycle of Prednisone just to be able to lie in down and sleep.
Yesterday, was the last dose and now I do not have the incredible chest
and diaphragmatic pain, however, my chest feels like a car has parked
itself there and my chest won't expand. It feels extremely heavy,
and/or very tight. What is this and how can I make it go away?
Thanks,
Roneice
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Re: MrsRose to Letisha (below)
I was diagnosed with Polymyalagia Rheumatica in July (although my problems
started in May or maybe much earlier), and had a lost summer with a high dose of
Prednisone (80 mg./da for awhile). It turned me into a Zombie, up all hours of
the night, eating constantly, hyperactive, WEIRD. I had a temple biopsy July 5
where the surgeon took 2" pieces of artery from each temple to rule out Giant
Cell Arteritis which could cause blindness. Then I experienced withdrawal as I
tried to lower the dose per my Dr's direction.
Prednizone eased the shooting pains in my head, pain in ears, jaws, throat,
joints, but getting off of it is something else. I'm still on 10 mg./da. I esp.
worry about my bones for which I've been using a compounded bio-identical
Progesterone cream, calcium-mag supplements and weight bearing exercise. The
Poly-Rheu knocked me out for any kind of work or exercise all summer and early
fall. I have always been very active and engaged, and this past summer about all
I could do was groan in pain, watch my garden and house fall apart around me,
and sleep (after I reduced the Prednisone). My sed rate in September was 119,
89,& 89. My family Dr's recommendation was to increase Prednisone each time. I
refused, and called my nephew, Mike.
Mike had been diagnosed with Rheumatoid Arthritis four years before had gone
through his family Dr.'s recommendations and Rheumatologist's treatment which
included some of the chemo drugs, was not doing well, and could hardly get up
and down. He was 40 yrs. of age, married, 3 young children, high school
principal working on a doctorate. He was a state wrestling champion in High
School, very fit.
Nephew Mike had made an appointment earlier with Dr. John Sinnott in Ida Grove,
IA, who marches to a different drummer. Dr. Sinnott treats all connective
tissue diseases as infections/allergies, with antibiotic IVs (Minocycline), 2
900 mg. a day for 5 days followed by a LONG oral Minocycline 100 mg.(or other
Tetracycline family) therapy. (these were MY doses at least) But Mike cancelled
his first appointment, and only made a second one when he became so debilitated
he could do nothing. It is now 4(?) years later, he's still taking some
Minocycline orally, but he is able to function well, is off of the harsh drugs,
has completed his doctorate, keeps busy with his work and family and tells me
"Dr. Sinnott saved my life, Aunt Bev! Go see him." The mother of a college
friend, who recommended Dr. Sinnott to Mike, also had R.A. I don't know how
long her treatment lasted, but Mike says for the past 3 years she has been
totally drug free - including antibiotics - and shows no symptoms of R.A. Dr.
Sinnott aims for "remission", not "cure."
Dr. Sinnott's antibiotic therapy is based on the late Dr. Thomas McPherson
Brown's earlier research, writing and therapy. See The Road Back Foundation,
read /The New Arthritis Breakthrough/ by the late Henry Scammell. Putting it
mildly, it is not well accepted by the pharmaceutical companies nor the medical
profession for various reasons. Don't be surprised if you Dr. thinks of it as
"quack" medicine, or insists on seeing "studies."
Drs. Brown & Sinnott's belief: many of the so called auto-immune diseases like
R.A., Lupus, Scleroderma...are actually triggered by "left over" bacteria
(micoplasma) from a previous infection which didn't get totally wiped out. they
stay in the body, undetected, until something causes them to strike a part of
the body, the joints, heart valves, eyes, skin...and do their damage. The usual
drugs to treat them, including Methotrexate, Plaquenil, gold... may ease the
SYMPTOMS for awhile (while the disease progresses), IF the patient can remain on
them, but they do not get at the CAUSE of the disease, which this intense
antibiotic therapy does.
Dr. Sinnott requires a person's medical record sent to him, a urine test and
some blood tests at the Ida Grove, IA hospital. He has a one hour face to face
consultation with new patients. What seems to set him apart from other
alternative practitioners is that he requires the high dose IVs for 5 days,
followed by one of the oral tetracyclines long term.
Dr. Sinnott is a soft spoken, warm, attentive small town Dr. (D.O.) Ida Grove is
in western Iowa, pop. 2000+! He does not advertise, all his patients come via
word of mouth or the internet. He treats ALL connective tissue diseases. He has
done this therapy in Ida Grove, IA's Horn hospital for 20 years, with 80-85%
success rate, never had a malpractice suit. His patients come from almost all
the states and 6 foreign countries. There were 5 of us at the same motel while I
was there! Some have to come back for the IV therapy more than once, some have
to remain on low dose antibiotics for a LONG time, but the testimonials written
in journals which a local motel has kept since 2000, can't say enough for Dr.
Sinnott, this therapy, the hospital and staff, the community...
I did not have Herxheimer reaction to the IVs - yet. I can't honestly say that
I notice a remarkable change - yet, slightly less stiff and sore, even though we
are experiencing cold, wet weather right now and I chill easily. I may be
unusual as to reactions, since I did not get Moon Face or gain weight on
Prednisone, in fact I lost 10 lbs., nor did I get a "metallic" taste while
having Minocycline IVs.
My sed rate at Horn Hosp. last week was 65 (yes, I realize, different lab doing
the sed rate).
I am to call Dr. Sinnott back in 6 weeks to report how I'm doing. By then I
should know more IF and/or how much it is helping me. The 150+ testimonials I
read in the motel's "journals" were powerful.
http://www.sinnottandtobenmedarts.com/
http://rheumatic.org/started.htm
_http://www.arthritistrust.org_
NOT AN ENDORSEMENT. Dr. Sinnott is not listed on this site. Scroll down to MV,
Micoplasma vaccine, re antibiotic treatment of R.A.
local pharmacists might know doctors who would be open to this therapy.

If you have Secondary (AA) Amyloidosis due to your RA, please join us at our
meeting this Saturday in Itasca IL. The website is www.amyloidosissupport.com
and e-mail me muriel@... or call Toll Free and leave a message
at 866-404-7539.
Muriel Finkel
Itasca IL
Uncle Had AL with Kidney, Heart and GI involvement
1926-2003

This is from my saved files
Take care,
Ute

http://general-medicine.jwatch.org/cgi/content/full/2006/907/1
Serious Infections with Anti-TNF Drugs for RA
The overall rate of serious infections was the same with anti-TNF drugs as
with traditional DMARDs, but skin and soft-tissue infections were more common.
Patients who receive antitumor necrosis factor (TNF) drugs for rheumatoid
arthritis (RA) are at risk for serious infections. U.K. researchers used a
national registry of RA patients to compare rates of serious infections in 7664
patients receiving anti-TNF drugs (etanercept [Enbrel], infliximab [Remicade],
and adalimumab [Humira]) and 1354 patients receiving only disease-modifying
antirheumatic drugs (DMARDs) such as methotrexate. Serious infections were those
that resulted in hospitalization or death or that required intravenous
antibiotics.
The rate of serious infections was higher in the anti-TNF group than in the
DMARD group (53 vs. 41 events per 1000 person-years), with similar rates for
each of the three anti-TNF drugs. After adjustment for potentially confounding
variables, overall rates in the anti-TNF and DMARD groups were not significantly
different (incidence rate ratio [IRR], 1.03). However, skin and soft-tissue
infections were significantly more common in the anti-TNF group than in the
DMARD group (IRR, 4.28). Nineteen serious intracellular bacterial infections
occurred, all in anti-TNF drug recipients: tuberculosis (10 cases, 7 of which
were extrapulmonary), listeria (3), salmonella (3), legionella (2), and
Mycobacterium fortuitum (1).
Comment: This study presumably captured most U.K. patients who received
anti-TNF drugs during a defined interval, and the results thus should be
representative of the infectious complications seen with these drugs. Key
findings are the increased incidence of skin and soft-tissue infections and the
infections with intracellular organisms (including extrapulmonary tuberculosis).
Because the study did not include untreated controls, it's unclear how these
infection rates compare with rates in the general population.
Allan S. Brett, MD
Published in Journal Watch September 7, 2006
Citation(s):
Dixon WG et al. Rates of serious infection, including site-specific and
bacterial intracellular infection, in rheumatoid arthritis patients receiving
antitumor necrosis factor therapy. Arthritis Rheum 2006 Aug; 54:2368-76.
[Medline abstract][Download citation]
Muriel Finkel
President
AMYLOIDOSIS SUPPORT GROUPS, INC.

I forwarded the email from a member having difficulty getting on the website to
the email addy I had for the detox foot pads and I am so glad I did. They wrote
back to me and the group and turns out I have been placing the foot pads
incorrectly...he has an explanation at the end of his email...YIPES I have been
putting mine on the arch...so sorry I had the placement wrong. I believe he gave
his email addy for anyone interested in them and having difficulty on the
site..I had it but did not want to post it on our BB...so I just posted the
website where I got mine...this should help our members having difficulty
ordering from the site..and tonight, I am placing them correctly....arghh
but hey, they still worked wonders for me :

*FDA Urges Stronger Painkiller Labeling*
<http://abcnews.go.com/Health/story?id=2737969&page=1
*ABC News -** 3 hours ago*
By DAN CHILDS. Dec. 19, 2006 - Federal health officials pushed today for
stronger warning labels for common over-the-counter (OTC) painkillers
acetaminophen, aspirin and ibuprofen.
FDA Calls for Tougher Warnings on OTC Painkillers
<http://www.forbes.com/forbeslife/health/feeds/hscout/2006/12/19/hscout600318.ht\
ml
Forbes
FDA wants sterner pain reliever warnings
<http://seattlepi.nwsource.com/business/1310AP_Pain_Reliever_Warning.html
Seattle Post Intelligencer
Bloomberg
<http://www.bloomberg.com/apps/news?pid=20601103&sid=a2gjnewJJV4s&refer=us
Reuters
<http://today.reuters.com/News/newsArticle.aspx?type=topNews&storyID=2006-12-19T\
234551Z_01_WAT006768_RTRUKOC_0_US-PAINKILLERS.xml&WTmodLoc=NewsHome-C1-topNews-7\
MarketWatch
<http://www.marketwatch.com/news/story/fda-proposes-amended-label-warnings/story\
.aspx?guid=%7B4B4DB77E-85FF-4A68-B19B-BF7CD08E4F1B%7D
WebMD <http://www.webmd.com/content/article/130/117864.htm
*all 346 news articles »* <http://news.google.com/?ncl=1112103142&hl=en

Hi!
Yikes, I just went to renew my minocin (lederle) and found the price
had doubled to $253 for 30 capsules of 100mg. I know someone had
some reliable recommendations on getting it online for less. If
anyone is able to let me know, I'd appreciate it. Is there any
chance that the online pharmacies could be selling something fake?
Thanks for educating me! ew

Does RA tend to be migratory? My arthritis started 1 1/2 years ago
and seems to only spread when I'm on steroids or other meds. I am
currently taking nothing and it hasn't spread since. I'm assuming it
spreads because the swelling and inflamation are lowered and the
organisms that cause the arthritis then travel throughout the rest of
my body. Does that sound possible?
Also, several of my joints have gotten better. Little to no pain
anymore. I still have arthritis in my knees and foot and sometimes
other places will act up.
Is this all typical of RA?

Good timing on a discussion about probiotics. I was just going to post about it
myself. I took Ethel's advice and switched to Natren Healthy Trinity. The
difference is AMAZING! I've used about every brand including Metagenics and
nothing has helped my gut like Natren. It's expensive ($60 for 30 caps) but you
take only 1 per day. The Metagenics brand was a less money but I was taking 4
caps per day. I use to have lots of lower digestive gas, especially mid
afternoon on into evening but now I have none. I'm sure it's working well for
me.
Lea

I am scheduled to see a new doctor on Oct.4 and I am wondering if I
should ask about AP right away or feel out the situation? My family
doctor wants nothing to do with it.So if the rheumy says no I am going
to feel stuck because she is the last one that my HMO covers.I have been
through 6 others that just wanted to put me on the normal toxic drugs.
Any suggestion would be helpful. Thank you,Kelly [:)]

I'm interested in trying this, can you tell me a little more about dosage?
Thanks, Melissa

Merry Christmas to all!!

Here is a forward from my yoga teacher's list
Ute
<http://www.yogasite.com/yoga_store/dvd-47.html

I'm not sure that the dark colour ever stops. I think it is caused by the
substances in the footpad.

Hi group,
Steve and I wish you all a very happy Christmas and a New Year which
brings you all increased health and happiness.
Chris.

Garlic Blasts Worst
Antibiotic Resistant Bacteria
CHICAGO (UPI) - Microbiology researchers said Wednesday the active
ingredient in garlic combats two of the nastiest antibiotic resistant
microbes faced by doctors and patients.
The ingredient, a substance know as allicin, has been found effective in
killing off methicillin-resistant Staphylococcus aureus -- a microbe that
has been especially troubling in skin and soft tissue wounds -- and in
inhibiting growth of vancomycin-resistant enterococci, an intestinal
bacteria that causes considerable illness and deaths in hospital settings.
"Allicin simply blows enormous holes through MRSA,' said Ronald Cutler,
senior lecturer in microbiology at the University of East London, England.
He has formulated allicin into skin products such as creams and soaps and
has achieved success in destroying the microbes in laboratory tests.
He said he also tested the cream on healthy volunteers -- including
himself -- and "we have found absolutely no adverse reactions."
Cutler, and his commercial venture Allicin International Ltd., are beginning
human testing with the allicin cream on patients with stubborn skin
infections caused by MRSA.
"What happens in a test tube may not occur when it is used in humans,"
cautioned Dr. Jaya Prakash, chairperson of the department of pathology,
microbiology and public health at National University of Health Sciences,
Lombard, Ill.
Prakash is experimenting with allicin in thwarting VRE.
"We have shown that we can inhibit the growth of these bacteria with
allicin. Some of the isolates are more stubborn than others," she said, but
at 150 micrograms of allicin the bacteria cannot proliferate.
She said humans can ingest about 25 grams a day of garlic without ill
effects, and that much garlic contains about 15 milligrams of allicin --
about 100 times more than what she used to control VRE.
Methicillin and vancomycin both are powerful antibiotics that for many years
were considered among the last medical defenses against vicious microbes
such as S. aureus. In recent years, however, both S. aureus and enterococci
have developed mutations that allow the bugs to escape the killing power of
these antibiotics. Both organisms are multi-drug resistant.
The studies were presented at the annual Interscience Conference on
Antimicrobial Agents and Chemotherapy, a meeting sponsored by the American
Society of Microbiology in Chicago.
In Prakash's study, allicin was tested against two normal strains of
Enterococci fecalis and 24 vancomycin-resistant strains of E. fecalis. The
allicin concentrations stopped growth of the microbes within four hours.
Cutler said concentrations of allicin at levels of 32 parts per million in a
liquid or cream formulation were sufficient to inhibit MRSA. The cream he
tested on himself contained 500 parts per million of allicin.
Prakash said that before calling the substance "Allicin Wonderdrug" a lot of
clinical testing still must be accomplished.
--
No virus found in this outgoing message.
Checked by AVG Free Edition.
Version: 7.1.405 / Virus Database: 268.12.2/442 - Release Date: 9/8/2006

Dear Group,
The news item below appeared today, 9/21/06. No list yet of the 291
(out 1,800) generic drugs that will be available at Wall-Mart for as
low as $4 for one-month supply.
Sincerely, Harald
Generic drugs getting cheaper at Wal-Mart
No. 1 retailer launches program selling nearly 300 common medicines
for as low as $4.
By Parija B. Kavilanz, CNNMoney.com staff writer
September 21 2006: 2:22 PM EDT
NEW YORK (CNNMoney) -- Wal-Mart announced Thursday a pilot program in
Florida to sell about 300 generic prescription drugs for as low as $4
for a 30-day supply.
The program will be available to both insured and uninsured
consumers, and will cover 291 generic medicines for things like
allergies, high cholesterol, high blood pressure and diabetes.
Some antibiotics, antidepressants, antipsychotics and prescription
vitamins are also covered under the new plan, the world's largest
retailer said.
The company said it would soon run radio and newspapers ads listing
drugs included in the program.
The program, due to start Friday, will be available to customers and
employees at 65 Wal-Mart stores, Wal-Mart neighborhood market stores
and Sam's Club pharmacies in the Tampa Bay, Fla., area. The company
hopes to expand the program to its 3,900 pharmacies nationwide in January 2007.
In a conference call with reporters, Bill Simon, an executive vice
president in Wal-Mart's pharmacy business, estimated that saving to
customers would range from 16 to 67 percent.
For example, he said, buying a 30-day supply of the diabetes drug
Metformin for $4 is nearly 50 percent less than the cost of the brand
name version of the drug.
And a 30-day supply of a brand name blood-pressure drug that
typically costs $12 would save customers $96 a year if they buy the
generic, Lisinopril, for $4, he said. Once the 30 days are up, Simon
said customers can renew the plan for another 30 days for as long as
they need the prescription.
The $4 pricing will be available to all pharmacy customers with a
doctor's prescription that can be filled with a covered generic medicine.
For customers with a $10 prescription drug copay on their medical
coverage, Wal-Mart will only charge the $4, Simon said.
He declined to say if the program would help boost Wal-Mart's share
of the nation's highly competitive pharmacy business. The retailer
does not disclose those numbers.
But he did reveal that the company was in talks to partner with 30
generic drugmakers ahead of an expanded rollout. Simon said Wal-Mart
planned to keep prices for these products low by leveraging the
retailer's size. And it plans to boost pharmacy staffing as it rolls
out the program.
"This move is possibly the most forceful supply chain move by
Wal-Mart in years, since their final retail pricing for many generics
will beat the market prices at other pharmacy counters," Richard
Hastings, senior retail analyst with Bernard Sands, wrote in a note Thursday.
Hastings said that while big drugstore chains, Walgreen, CVS and Rite
Aid will probably respond to Wal-Mart's move, smaller prescription
drug buyers, like supermarket chains that offer pharmacy services,
could see profits from medicines come under pressure.
On Wall Street, investors were betting that Wal-Mart's new plan would
hurt other drugstore chains. Shares of Walgreen (down $3.48 to
$46.47), CVS and Rite Aid all tumbled following Wal-Mart's announcement.
Wal-Mart shares edged lower on the New York Stock Exchange.
"From an earnings perspective, this should be a neutral event for
Wal-Mart," Hastings said. "It could improve customer loyalty and
shopper traffic over the long term. The key for Wal-Mart is to get
customers in, and keep them shopping in other departments. We'll wait
and see if this works, but it will take up to two years to know if
this has helped."
Wal-Mart (Charts), which has been the target of critics who complain
that its health insurance is out of reach for many of its 1.3 million
U.S. employees, has in the past year introduced several programs to
improve its benefits for workers.
In April, the company extended insurance coverage to the children of
part-time workers and started a benefit plan with monthly premiums as
low as $11.
Wal-Mart said the program will help alleviate a major challenge for
seniors who have fallen into the "doughnut hole" coverage gap in
their Medicare Part D prescription drug plans and now find themselves
responsible for paying 100 percent of their prescription medicine costs.
At least one public interest group called Wal-Mart's drug pricing
initiative a "step in the right direction."
"These lower prices will give consumers a break from the outrageous
cost of healthcare in this country," said Emily Clayton, healthcare
advocate with the California Public Interest Research Group (CALPIRG).
"Obviously this plan is only part of the bigger healthcare problem.
In order to get the drugs at whatever the price, people first have to
go to the doctor to get the prescription. This is the biggest cost of
the system, especially for the uninsured," Clayton said.

I was diagnosed with PsA last December. My rheumatologist prescribed 100 mg of
doxycycline twice daily. I've done very well on it. CRP has gone down to the
high-end of normal, and my pain has lessened considerably. I haven't had any
side effects at all.
Nancy
4c. Re: minocin vs doxycycline Dr Chiu
Posted by: "EJFISCH@..." EJFISCH@...
Date: Wed Jun 21, 2006 6:31 am (PDT)
Hi, I can't take Minocin, but have no trouble with Doxy. My doctor orders the
bills instead of the capsules for me. Carol
In a message dated 6/20/06 11:52:16 PM Eastern Daylight Time,
esther_warkov@... writes:
Hi,
I've had great improvement in my knee with minocin (it was diagnosed
through biopsy with inflammatory arthritis). However I'm a person
that doesn't tolerate minocin very well, even 50 mg doses. I still
have some symptoms in my fingers and toes at this time. Dr. Chiu
recommended doxycycline. Does anyone have experience with using that
instead of minocin?

Anyone with AA Amyloidosis is welcome to the meeting at Cedars Sinai on
1/6 Saturday at Cedars Sinai. Please go to www.amyloidosissupport.com
for information or e-mail me..Happy Holidays.
Muriel
Amyloidosis Support Groups
(Uncle Died of Amyloidosis 9/28/2003 - Chicag)

Hi,
I have a reactive athritis that moves around between my hands and feet and
prostate. Could someone please pass on the name of the clinic in Califonia that
does the full workup for this condition.
Thanks
Bill

Dear Group:
I need some advise on a immune support product I saw advertised on the
Web. It's name is Agaricus Bio Immune Support, sounds very impressive
however I don't want to take anything that will make my RA worse.
This product is made from a lot of mushrooms and does something to
TNF. That is the part that scared me. Does anyone in our group know
aomething about the mechanism of this supplement?
I am getting infusions to kill some of the TNF (tumor necrosous
factor) and don't want to kill my results from the Remicadeby taking
this product then again wonder if it can help us.
Sincerely,
Bunny
P.S. Atlas World USA is the distributor at www.atlasworldusa.com

Sally,
Thanks for the reply. I appreciate the info. I think I will try
going to my GP (most likely will have to switch to another local one
b/c my GP probably won't go for the AP- but I'll try her first).
I don't want anyone to think I'm recommending Plaquenil b/c it is a
DMARD. However, I will say it changed my life. I am concerned
about the vision damage too. I am on a big dose now, so I'm really
wanting to cut that down. Yes, it's pill form and it's listed under
Hydroxychlor (I think that's the generic) if that helps you find it
in your book. It's been around for a very long time. It's an anti-
malaria drug.
Harrison is in NW AR. It's about 30 mins south of Branson MO. It's
beautiful here. We are blessed by nature - EVERYDAY! You can find
all kinds of wildlife in our backyard on any given day. Nice for us
to see... not so nice for our garden.... :-(
I work at my kids school so I'm off during the summer time. I am
really trying to get an exercise habit started. I can already tell
it helps the pain. I must admit that my pain is nothing compared to
what I've had in the past. Most days I can't even tell anything is
wrong... until I decide to stop the meds (thinking I'm cured!) and
then the pain returns and scares me so much that I run to the
medicine cabinet for my meds. Just to have a little reminder of the
pain I had before just frightens me. It comes back after a week or
so of cutting back the meds and even trying to taper off the meds.
Then, the pain starts in, as a reminder that I'm not cured. It's a
battle - mind and body.
Martha sent me great info when I first was sick about the joint
damage I could have if I didn't start AP. However, I thought I
would wait for a dx.... none so far. I've heard it takes time for a
dx. I also have a lot of back pain (I've had a spinal fusion for
Scoliosis so I'm not ever sure if it's maybe arthritis from RA or
from surgery). John has helped me with info about AS. I've wrote
down the tests he suggested I have my doc. run. This group has
helped me alot.
Thanks again for the info.