Auto-immune diseases

I came across this website while searching for Peter D'Adamo's site. I
thought some of you might be interested. I have no idea how valid his
comments are, but they are interesting.
Linda
http://www.vegsource.org/klaper/diet.htm

Hi Chris,
Yes, thanks, you had sent me the list. It is WONDERFUL. I have been sending
it to folks on this list, or parts of it. Maybe you should send it to the
whole list again!!! Speight has a good reputation here. He was featured on
a front page health section of the Charlotte Observer, so he is considered
good in the main stream as well, which can be helpful. Also, I have
internet friends all over who will find this list handy.
Thanks again.
Paula Carnes

Hi Bonnie,
There has been a support group and a doctors' mailing list associated with
rheumatic.org for just over three years now. We have been on various servers and
have been on onelist for a few months. The web page, mailing lists and
associated activities were founded by Ethel Snooks, myself and my son Steve.
We have a floating population of 280 to 320 people which strangely enough seems
to stay constant. Some people have been on the list since the beginning. A very
large number of people have recovered and have left the group to get on with
their lives. Some of their medical histories are listed on our webpage.
One of our greatest assets is Dr. Graham Chiu, a rheumatologist from New
Zealand, who is a permanent member of this group. We have a large number of
people in the group who are professionals in medical fields - doctors, nurses,
chemists, lab techs etc.
Welcome to the group :)
Chris.
By the way how Long has this group existed.
Bonnie

Linda:
I have gone through the same thing. It is scary, all right. In addition, my
body
does not absorb potassium correctly and often I get fast pulse with this
depletion of potassium. Also I have an overactive thyroid gland with benign
nodules which they found out through a thyroid scan. I had a partial
thyroidectomy
in 1972 (long time ago!!!!) benign nodes and it was an underactive thyroid. The
endocrinologist states that this will be a wait and see for awhile. Because my
panel shows that my brain (TSH) thinks that I am getting sufficient thyroid
stimulation.
If and when my thyroid starts to become "very" underactive, the nodes are taken
over,
then I will be put on synthroid, whatever.!!! Sounds confusing it is. I have
been pleased
however going to an endocrinologist for the thyroid problem. My rheumatologist,
unfortunately,
does not help a great deal. I need another one. She is quite "put-out" with me
because I can
not take any of the NSAID because of my asthma nor can I take Celebrex,
azulfidien, plaguenil,
ibuprofens, aspirin, or cox inhibitors. I wheeze, labored breathing, and then I
feel like /I am
swelling inside/and outside,. So I am still on predisone to help with asthma and
RA. Since
Dec. 98 - 10 mg. I wish I had the money I think I would try Arava. I do not
know much about
it however. I am going to give Minocycline a try. Although sometimes I feel
dizzy with it.
The fast heart rate has sent me to the E.R. a couple of times. Of course, one
time it was
pneumonia as well, high white count. So all or this to say. I am thinking of
you. And
it will get better. I know that sometimes we seem to go from one ailment to
another, I do.
It seems to be a part of the cycle of RA and connective tissue diseases.
Some times I am doing better than at another time, and some people think, well,
she doesn't
look sick today. She seems happy enough!!!!!!! little do they know.
Here goes:
I have HBP and I am on verapamil for that 1x day 180 mg. Then I have excess
Lasix so I need
PRN that 40 mg; then I need to take potassium supplement so K-Dur for that, then
I am on
the minocycline for RA, then I need a probiotic to help with that, then I take
predisone unfortunately,
which has been good and bad, I do want to go to a lower dosage of that; so
therefore, the predisone has
played havoc with my blood sugar, it is a little too high and now I am on
glucophage 1 x a day
to regulate that. Since I have asthma since a child, I then take albuterol, with
nebulizer, and
WOW. I am on oxygen at night for the COPD when I have difficulty sleeping. And
I am still
trying to work at a 40 hr week job. Get real. I am running out of steam for
sure.
Did not mean to weary you out, really. Just wanted to relate some of my stuff.
I wanted you to
know, thanks for sharing this evening or is it morning. I often do my office
work late (it is due on
Monday a.m. ) and oftentimes because of the pain, I can't sleep anyway. I think
better late in
the evening/night than I do in the a.m. at 7 or 8 or so.
Let us know how you are doing.
Martha from St. Augustine, Fla.

Well i was in the ER tonight for high blood pressure & a rapid heart rate (165)
which eventually came down,they took an ekg & it was fine just a fast heart
rate,which is something new,they drew blood & it came back as my white blood
cell count was high & overactive thyroid,also had a low grade temp. He
reccommended me to see my GP about doing a thyroid panel, i think thats
right,anyhow does any of this sound familiar? i guess i'll give an update as
soon as i hear more. Also instead of thanking everyone individually i'll get it
done at once,thanks for all the replies i got to my problem,i've read several
great suggestions & different types treatments,i guess i'll be making another
appt with my rheumatologist to see what he thinks,if all else fails i'll goto
birmingham al, once again thanks Linda

Aluminum foil, like aluminum pots or cookware, should be avoided.
The blood type diet is a fine tuning mechanism and the carbohydrate restrictions
far override D'damo's recommendations. Once the insulin levels are stabilized
then one can experiment with combining the two. The only area which seems to
have great value nearly all the time, is in selecting the types of dried beans
to eat based on one's blood type.
Dr. Mercola.

Does any one have problems with restless legs and or arms? what do you do
for it?
Jean

Oil of oregano seems to be the most potent.
Dr. Mercola

Hi Paula,
When we first set up the list we had it organised so that all replies went to
the whole group. Then we got over 100 messages a day and everyone started
complaining. People often don't look at who they're sending to or consider if
their message is of interest to the whole group or not. The other problem was
that the doctors on this list who help out, especially Dr. Chiu, were having
problems in ploughing through all the mail to find queries addressed to them. So
my son Steve, who is the listowner, changed it back to 'reply to sender'. All
people have to do is consider what they are posting and put in
rheumatic@onelist.com as the email address if it's for the whole group.
No, only the listowner can change setups for the list. You can change options
pertinent to your personal mail.
Chris.
would prefer that this list had a reply system that replied to the entire
list and then when we want to reply to just one we could do the cut and
paste routine. Listmaster, is this possible?????????? I am wondering if we go
to the onelist site, can we change our options??????
Paula Carnes

I was talking with Bev the other night on ICQ and I mentioned to her that it
would be nice if I knew more about people on the list, not only the meds they
were taking , but also something about them, so that when I saw their notes, I
could have a better appreciation of where they were coming from. So often I
forget things about a person, or when they got this crazy disease or what meds
they're on, etc.
So I asked Bev what she thought of the idea of creating an area in the
"rheumatic" section of OneList where we could enter a short bio about ourself
and about what we've done in regards to our medical problems. She thought that
was a cool idea, so I decided to be a guinea pig and create one for myself and
put it up there.
I typed a short bio, and then did a short medical section. I typed it in MS Word
and saved it as an html file. You can do it anyway you want, but I was trying
to make sure everyone could read it and I knew everyone could read an html file
(that's the file format that everything you see on the Web is written in). You
may want to check your word processors and see if you have the capability of
saving it that way.(Click Save As... - and you will see the different formats
you can save stuff in). If not, you could probably save it as a .txt file
although you don't have much in the way of formatting abilities that way.
Anyway, you can see this by going to http://www.onelist.com/files/rheumatic/ .
There you will see a folder called Biographies which I created. If you click on
it, you will come to my file. You will note on this page (before you click on
my file), that there is a place that says "upload file". That is what you would
click if you were going to upload your file, which you had created in MSWord,
WP, Notepad, Wordpad, or whatever. You just click on that and then click on the
"Browse" button which will browse your hard drive to locate the file you saved.
Just click on that file, click on Open and it will put the file name into that
box. I saved my file as "Bio of Mark Holmes.html" I then gave it a description
line of "Bio and Health Update for Mark Holmes". All of this sounds complicated
- in reality, it really isn't. If you're having problems with it, just email me
the file and I will put it up for you.
I have no idea what you think of this idea and if you don't like it, that's cool
too. In the meantime, you're welcome to read mine and chuckle a bit. I should
add that anytime you want to modify your story, you can go back in and delete
the file and then just upload a new one. (I'll probably do that with mine, since
I was doing this hastily just to put it up there, so you would get a general
idea).
You do not need to write as much as I did or you can write 3 times as much -
there are no rules. And you can be as lighthearted or as serious as you wish -
again - no rules. The only thing I think we should all know is what you're
taking and how you're doing and how long this process has been going on for you.
If you're good at html stuff, then you can even include a picture or clip art or
whatever. My file took up 8KB. Figure 300 members x 8kb = 2400KB - still plenty
of room on OneList for more files.
P.S. - You will also note that OneList has a whole new look to it now. One nice
thing - it saves your log-on info, so you don't have to keep doing that!
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day MWF;Zithromax 500mg T,Sa; Lodine
400mg 3x/day;Zone Diet;;Slippery Elm;Fish Oil(9 caps/day);Milk
Thistle;bromelain;boswellia;glucosamine(1500mg)
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html
ICQ 18123139

The cardiologist called me. Randy is in ICU getting medications.
His EKG has a number of abnormalities but so far blood work has not
shown damage. That takes awhile to show up. The doctor said the
reports of the pain seemed to be colicky so he is considering an ulcer
or gallbladder. Please, let it be an ulcer. They will be checking
enzymes for any damage and doing further heart tests. If nothing shows
up about the heart, the cardiologist said they would do nothing based on
the EKG.
I have been sick over his not working and no insurance. At this
point, they would have to take my organs to pay for this bill. I've
been hoping he would get a job so we could take care of some things and
I could get better health care. We are not only wiped out but in debt.
Denise

Hi there
I had been reading and learning from the group for alternatives to
methotrexate and it's pals...
My RA doctor would hear nothing about this protocol, she did not even
give me the choice...
I took the information that I had picked up here and elsewhere on the
sites to my family doctor. She read over everything and agreed that
perhaps it was not RA, perhaps it was fibromyalgia - or both..
Aug 12/99
I began with oral minocin - 100mg twice daily
I began with celebrex, -see below
I am currently on Relafen 500mg twice daily
I am finishing off the folic acid from the supply I had during my
methotrexate treatment.
I felt pretty good the first week....then last weekend I had a very bad
flare. I stayed quiet and things calmed down....as I got back to my
routine, things started getting very bad again. My feet swelled up like
balloons, along with my legs, arms, etc. The pain was terrible. My
doctor put me on water pills and ordered me off work, feet up for at
least one week. My whole body hurts, just as I think it is a bit better,
it begins to hurt again...
I was wondering a couple of things: How long do these set backs last?
How many
setbacks do you usually have?
I am on 100mg or 150 mg twice day of codeine with a muscle relaxant at
night.
During the day, I have tylenol 3's.
Anyone know what to do about "dry mouth".........
Thanks for listening....the nice thing about this is it is less abusive
to our bodies and it may not take a lifetime for them to work....
Take care
Cathy:)

Remicade - sounds good - but this stuff is insane - just like Enbrel and Arava -
sorry, but even plain ol' metho is beginning to look good to me now - $10 after
my insurance for a month's worth.
Do they think only the wealthy get this disease? The insurance companies must be
freaking out over having to pay for this stuff - wonder what it will do to
rates? I can only guess - up, up and away!
My insurance rates just got jacked up 8% after a rate increase of 7% last year -
no telling what they would be if I decided I wanted remicade.
I think I will write my senator or congressman.
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day MWF;Zithromax 500mg T,Sa; Lodine
400mg 3x/day;Zone Diet;;Slippery Elm;Fish Oil(9 caps/day);Milk
Thistle;bromelain;boswellia;glucosamine(1500mg)
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html
ICQ 18123139

Thank you, Jan
I talked with ER doctor and CAT scan is negative, EKG doesn't show
anything. They don't know what is causing the chest pain. He was
sleeping when I called, finally had settled down. Randy agreed to stay
over night. This is really something. In 13 years he went to a
physician once when he had sciatica.
My neighbor is coming over to help a little, wlak the dog give the
animals food and water and will give me my pills later and water and
food.
I am still nervous trying to take slow breaths so I don't end up
with him with a stroke.
Denise
NC sorry i am really scattered

http://www.ivanhoe.com/stream/newdrughelpsarthritis.html

Randy was taken to hospital at 9 something this am now 1 called at 11
15 and nurse said he was having cat scan restless and didn't look good
neighbor caring for me right now

Hi,
Can anyone tell me if there is a generic doxycycline that is effective
with RA? I had great results with minocycline, but I am in constant pain
with Vibramycin even after taking it for over a year. Perhaps a generic
would be better if I knew which one to ask for.
Thank you,
Gloria

penetrans or M. hominis blood infections by Forensic PCR.

Some were asking me to send more on this, so here is a new one.
Paula Carnes
Chronic Infections in CFIDS, FMS and Arthritis
Identification and Treatment of Chronic Infections in CFIDS,
Fibromyalgia Syndrome and Rheumatoid Arthritis Patients That
Cause Morbidity and Illness Progression
By Dr. Garth L. Nicolson
http://www.clickaction.com/GoNow/a3000a41

Denise makes four people who have posted either to me or the group who
have a very high RF and no pain. I don't like not understanding what's
going on, but maybe RF doesn't really say that much----I still don't
like it.
Julie

Lisa:
Can you please give me Dr. Franco address & phone number. If you can, what
have
you been diagnosed with.
Many thanks
Pete

<<Hi everyone...........I certainly understand the importance of diet, and
the reasoning behind eliminating certain foods, ie dairy, fats, sugars,
etc..........but, can anyone answer this: How does one adhere to Dr.
Mercols's diet and still benefit from the blood-type diet (which Dr.
advocates)?
If I had more time, money, mobility and motivation I would follow all of Dr.
Mercola's dietary suggestions. I take what I can use and leave the rest. I
did a very strict elimination diet when I was so sick last year. This seems
to have solved the leaky gut problem. There are foods that used to set off
flares which no longer do.
Dr. Mercola has completely ruined milk for me. I don't care if it is
pasteurized--I can't stand the thought of drinking blood and puss. Check
the archives for what he says about milk, gag, and retch.
I really don't like vegetables. I like fruit and berries. I do take
supplements.
How am I don't? If the only problem I had was rheumatoid arthritis I
wouldn't have any problems. I took my first minocycline (generic by
Biocraft) on 11/04/98. I take 100 mg every other day. I have a little bit
of stiffness in my right pinky finger.
My knee is shot and I can barely walk but this is a structural problem not
related to RA. I am going to have knee replacement surgery as soon as I can
shake the Kaiser system. My knee is blown and is horrible even with the use
of a walker. I'm having trouble even getting to the bathroom. "Depends"
are in my immediate future due to the blasted knee.
In spite of this I am not in a flare which if my RA were active would be
happening because of the knee.
I have not taken any of the DMARDS, had a little of the steroids and know
the protocol is working for me. I was lucky to get on it early in my
disease process. The process of my recovery seems pretty "classic" when I
compare it to the stories on the web site and in the book. I got the herx
affect. The inflammation bounced around my joints for a while and now it is
gone.
My labs don't reflect my progress and from what I've read of the RF that is
no big deal anyway. My RF was last 412 which was down from 490. Who cares?
It's just numbers and people totally crippled can have a zero on that test.
My sed rate was down to 37. I think the sed rate is more relevant and 37
isn't very high.
A bit over a year ago my hands were swelling up like big red lobster claws.
I couldn't put on my socks or hook my bra. I couldn't turn the door handle
on the front door or open a jar. Some nights I couldn't sleep no matter how
much vicodin I ate.
I changed how I eat and got better. I started antibiotics on 11/04/98 and
started to heal.
The RD who saw me last August told me I'd be in a wheelchair in a few months
unless I took Methotrexate. I didn't take it. Now he has left Kaiser and
moved to Texas to practice in a field other than rheumatology.
Thanks to G-d, Ethel, Chris, Bob Driijer and everyone else who has saved my
life. I don't know what I will eventually die from but I don't think it
will be rheumatoid arthritis.
Denise in Oregon

A lack of hydrochloric acid in the stomach can be a big factor in chronic
disease. You might want to read the following article for information.
My daughter has been losing weight for a long time (she has had systemic
scleroderma and rheumatoid arthritis for over three years). The weight loss
problem has become critical. She waited 18 months to get an appointment with an
ACAM doctor here, and finally went to her last Tuesday. This doctor is carrying
out the most thorough investigation of her status, which is currently in
progress. This doctor told her that she is not absorbing any of the nutrients
from her food.
Janene was asked to do a test for sufficient hydrochloric acid in the stomach.
There was either very little or none and she is now doing supplementation with
stomach enzyme tablets with hydrochloric acid. She is hungry for the first time
in many months and enjoying eating again
From the following article, it would be a good idea for everyone in this group
to carry out the following test:
You need betaine hydrochloride tablets plus enzymes - they are available from
health food shops. One brand is Golden Glow, phone 1300-363656, or a similar
product.
Take half a tablet before the last mouthful of a main meal. Burning or
indigestion means you have plenty of hydrochloric acid. Don't take any more
tablets. Use antacid or teaspoonful of bicarbonate to relieve discomfort.
If no burning or indigestion, next day take 1 tablet in the same way.
If still no burning or indigestion, next day take 2 tablets in the same way.
If still no burning or indigestion, then you need more acid.
There are other tests for stomach PH but they're all invasive.
So if you need more acid, then you take 2 betaine hydrochloric acid tablets with
main meals and 1 tablet with small meals. Swedish bitters can also help, as can
wine with meals and eating calm.y and enjoying food.
Chris.

Hello again,
Just learned i should hit reply
Thank you again
Patricia

Hi Group,
Will some one please:
1. repost the Dr. Nicholson post,
2. define PCR test and what it does
3. repost the review for which drugs work with which bugs
all referred to below, for those of us who are new on this list?
Wishing you all continued healing,
Glenda
RA 2 3/4 yrs, AP 2 1/2 mo. Minocin100 mg 2Xday, Ultram 50 mg 2X day
Hypothyroid 7 yrs, Levothyroxine 125 mg/day
Osteoporosis 8 mo, Fosamax 10 mg/day, Prempro .625 mg/2.5 mg/day
From: "Jean Probert" <jpro@...
Hi, Mark. I think the PCR test identifies the organism, then an
appropriate
antibiotic for that organism has to be chosen. These are listed in the
Dr.
Nicholson post made by Paula Carnes. There was another post with a brief
review of which drugs work for which bugs. I think even different strains
of
the same bug might be vulnerable or resistant to a given antibiotic.
Isn't
it the case that labs sometimes go so far as to test an antibiotic on a
culture of your particular bug drawn from your particular body in-vitro
to
test to see which antibiotic will work?
jean

Hi Mark,
Various MDs have written self-help books stating that some individuals
are allergic to dairy products and should avoid them. ( One doctor
stated that dairy caused early childhood diabetes.)
I had osteoarthritis for 13 years and when I went off ALL dairy, received
blessed relief of all pain. It was like being reborn. Of course this will
only apply to those in whose bodies dairy products produce an antigen.
Incidently I still contracted RA even after going off all dairy. And I
can
consume one small serving of dairy every 4 days with out problems.
Glenda
RA 2 3/4 yrs, AP 2 1/2 mo. Minocin100 mg 2Xday, Ultram 50 mg 2X day
Hypothyroid 7 yrs, Levothyroxine 125 mg/day
Osteoporosis 8 mo, Fosamax 10 mg/day, Prempro .625 mg/2.5 mg/day
On Sun, 5 Sep 1999 13:31:51 -0400 MHOLMES@... (HOLMES, MARK T.)
writes:

Hi Group,
I wish someone would post the essentials of the various diets,
particularly the blood type diet for those of us who do not have
internet access. This would be helpful from those of you who
have used the particular diet successfully.
Glenda
RA 2 3/4 yrs, AP 2 1/2 mo. Minocin100 mg 2Xday, Ultram 50 mg 2X day
Hypothyroid 7 yrs, Levothyroxine 125 mg/day
Osteoporosis 8 mo, Fosamax 10 mg/day, Prempro .625 mg/2.5 mg/day

I'm wondering if any of u on this list are suffering from CFIDS? I read on it
today & seems to me that it's so close to RA, If so u can e-mail me privately so
we can discuss this, thanks, Linda

Hi group,
The Spanish translation of the physicians' protocol on our web site was produced
by software - people in the group helped to improve it but it obviously wasn't
too good as I kept on getting emails about it from Spanish-speaking people.
Lucy has spent a great deal of time and effort in producing a good translation
of the protocol. It's now up on our web page at www.rheumatic.org/protspan.htm -
thankyou very much Lucy. Many (not in this group) criticized the original
translation but none volunteered to help, until you came along.
I will put an acknowledgement on the web page shortly,
Chris.

Hi,
Well, Dennis hit North Carolina after all. The eye went over
Raleigh, Sept. 5, the same date as Fran in 1996. Winds are not as bad,
just many inches of rain that we badly need.
I was in agony after the storm passed. This evening, my body began
to ache, not as bad as before, but even my collarbones hurt.
Anybody else in the area feel the drop in pressure? I usually don't
feel the every day changes the way I used to.
Denise
NC

I just want to compare some notes...I am almost finished with The New
Arthritis Breakthrough and was pretty amazed when getting to the portion in
The Road Back where Dr. Brown describes the precursors to RA....it was
almost as though he was reading my mail for the last couple of years...
I was diagnosed just six months ago...he mentioned trouble concentrating,
fatigue and some memory loss as symptoms which show up before actual joint
inflammation begins...Looking back at the last couple of years I can
emphatically state I experienced these symptoms and still do. it has made
my work very difficult...I work with computers and computer networking,
building, fixing, etc...etc....My mind works much slower than it used
to...sometimes it is almost as though there is some sort of block
there....It takes me much longer to come up with a workable solution to a
problem than it used to. I thought it was just age or something but after
reading this I am certain it is the RA causing this...
Anyone else with similar experiences?
Blessings and Health
Tony

I know this is kind of long...I'm sorry but want to give a little
background before I ask my question.
I've been taking Sulfasalazine/Prednisone/Plaquinil for about six months
now..This combo has helped my joints but suffer headaches once or more a
week (I assume from the Sulfasalazine)...the Prednisone has caused a little
weight gain but fortunately only about ten points to this point.
At the beginning of July my RD added MTX...I took it for about four weeks
and then stopped for a couple because I was feeling a little ill/slightly
feverish (I guess you could say a bit "fluish") a good percentage of the
time and I also felt like I had a cold coming on...Didn't take it for a
couple of weeks and felt better...then two weeks ago I took the MTX again
and this past week I have been feeling ill again. I mentioned this to my RD
and he said it was probably because he had forgotten to prescribe Folic Acid
for me...I told him I had been taking some store bought Folic Acid because I
had heard it was necessary but he prescribed some because he said the store
bought stuff is inferior.
I've been taking the prescribed folic acid for about four days now and
still feel a bit ill.
Now...to throw another wrench in the works....about the time I started
the MTX I also began taking 100mg of Doxycycline MWF...My RD hadn't
prescribed it for me...I got it from a friend who was my Corpsman (if you
remember, I am in the Navy....Navy Corpsmen can prescribe and dispense drugs
if they are "Independent Duty Corpsmen")...Actually one of the reasons I
stopped the MTX for a couple of weeks was because I had heard the MTX and
Doxy kind of work against each other. He gave me the Bottle of Doxy because
we had done some research and found that there was a connection between Gulf
War Synd. and RA/Mycoplasma Invasions..AND that there had been success
treating the symptoms of GWS with Doxy. I had started taking the Doxy six
months ago when he gave it to me but then stopped as I kept being told
DMARDs were the only way to combat this thing...I heard this over and over
in another onelist group and bought it since these people had many years of
experience with RA.
I've said all that to ask THIS.....from your experiences is the "ill
feeling" from the MTX (which I've heard can cause such feelings) OR is it
just the Doxy starting to work (it seems I've also read the Doxy or Mino.
can cause such feelings when the mycoplasmas begin to release from the
joints)...I know your aren't doctors and don't give medical advice etc...but
I am just asking for opinions from your experiences.
Thanks for everything....I sure like the positive attitude everyone here
seems to have!
Blessings and Health
Tony

Paula Carnes replies:
A PCR test will indentify mycoplasma or other intracellular infections, ie
infections which live inside cells as opposed to those who have their own
cell wall and can float or swim in the blood stream or lymph. It will not
identify which antibiotics are effective. PCR is a way of applifying what is
inside the cell, so that it can be seen and identified. There is no way it
can show what will get at that. There are three families of antibiotics
which work because they stop the ability of the bacteria or mycoplasma to
replicate inside cells. These are the doxycycline family (includes
minocyn), macrolides (includes Zithromax) and the quinolones. Often it is a
matter of trial and error to see which one will work for you. It is also a
factor of not taking ones to which you have adverse reactions. Sometimes
doctors can put some of your cells in a dish and add the antibiotic to see
if it works for you. The problem with this is what works in a dish may not
work in your body because you still have to get enough of the antibiotic to
the cells that are infected. So...we are talking trial and error, based on
the lab studies, in the end.
PJ suggests:
You are all on minocyn because the is the only antibiotic which
rheumatologists have done major studies on. That is not the only antibiotic
which works. It is one that crosses the blood brain barrier very well, and
my turn out to be the best one to use, but who knows. There are very few
studies so far on any of this.
- what you're suggesting
PJ replies:
I hope you can see from what I've written above that a PCR at the beginning
wouldn' have made a dime's worth of difference, except to your pocket book.
Keep truckin' and give the Zithromax 6-8 weeks to see if it helps.

PJ suggests:
I think MAYBE the best way to deal with candida is a low carbo diet, getting
rid of the sugars and starches which feed candida. Just a thought, but it
seems to have worked for me.

This is strange two of the people who responded to my RF question said
they also had little pain or stiffness, but had high RF's one has 800
the other 300 for 4 years. Someone else said a RF of 300 would be very
painful. I'm wondering if other factors can affect the tests outcome.
At the time I was tested I had a active yeast infection and I'm also
working on a underactive thyroid. My dr is good, but he's a GP still
learning about AP and I was so surprised by the high number and yeast
infection that I didn't push for answers.
Julie

I'm still trying to determine how upset I should be over my high RF
(301) in my last labs. My sed rate was 19 and I have no swollen joints
and almost no pain or stiffness. So I'm trying to figure out what the
high RF means---can the disease be eating my joints without me even
noticing? Anybody have any ideas?
Thanks,
Julie

Hi everyone...........I certainly understand the importance of diet, and the
reasoning behind eliminating certain foods, ie dairy, fats, sugars,
etc..........but, can anyone answer this: How does one adhere to Dr. Mercols's
diet and still benefit from the blood-type diet (which Dr. advocates)?
Be well, Joey

Hi Gang
I am on 100 mg of doxy 2 x a day MWF and 200 mg of celebrex 2x a day. The
more I think about it last night for dinner we ordered a pizza and then we
went out for a Dairy Queen so if I wanted to challenge the dairy products
issue ............IT WON !!!!!
I have tried minoc. for 4 mths prior to the doxy. So how many are left and
what are they?
I would still like to know when this web site started.
Bonnie

Diet is very important, and one specific reason
relates to our gut. Our guts are screwed up, so we have to have diets that
alleviate that. For example, dairy is terrible for our gut and we shouldn't
have sugar because (aside from it being empty calories) it promotes
yeast/candida which none of us need since we're all at risk already due to
the antibiotics.
Fish is good because certain types have omega 3 fatty acids which are
anti-inflammatory.
We should watch fats and oils because when they're heated they become
pro-inflammatory.l
Some people have to eliminate other foods due to allergies.
It it true, however, that as the Ap reduces the sensitivity of our systems we
can "Cheat" more, or even eat more of healthy foods that we may have reacted
too.
After following very strict diets, I am convinced of their worth, however I
now allow myself more flexibility. I truly believe that diet has kept me as
well as I have been and that the more we follow a healthy, meat-free (except
organic meat), fat-free (except olive oil and a tad or organic butter to cook
in) , dairy-free, and sugar-free diet the better off we'll all be. We can
still eat great stuff if we're creative and shop in well-supplied health food
storews (tho they are pricey!).
By the way, I just got a great Stevia powder that works great! I'll give
anyone name if they want.
Bon appetit!
Susan

I think I mistakenly sent this reply to only one person, but not sure. Are
my posts appearing twice??? I want to reply to the entire list, but when I
reply it seems to be just going to the one person who wrote the note. Can
someone tell me if there is a way to change the settings for this list???

Looking for a Dr. in the Seattle, WA. or Portland, OR. area for my wife ,
about
Antibiotic Treatments. Would like to know your story too.
Thanks
Pete

I've been on AP for 10 mths and was just wondering how long it takes before
any improvement. Is there anyone out there who has accomplished this.
To-day I woke up" thank God" and I felt like someone beat the s/// out of
me. I could hardly move. I've been up for a couple of hours now and feel a
bit better. Some days I feel I'm getting a bit better but most days it's
getting past the morning, hobbling around, and limbering up a bit. I swear
I'm thinking of putting a pair of motorized roller skates on my feet so I
don't have to bend anything. By the way how Long has this group existed.
Bonnie

Hi Paula.............looking through email, I see it was you who posted the
elusive site. Didn't mean to sound rude ie "the person who"...........
:) Joey

Hello group,
Does anyone know of a doctor using the AP in Santa Cruz or Monterrey
Counties of California? Please let me know if you do. Thanks. Philip

I can't remember who was asking about it, but here are some sites that explain
what the rheumatoid factor test is checking for, along with a good collection of
other test info. Liz G
http://www.labmed.washington.edu/Division/Immunology/ref_chart.html
http://www.vh.org/Welcome/UIHC/UIHCMedDepts/IntMed/Rheumatology/LabTests.html

http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/09-01-199\
9/0001013853&EDATE=
--
Clark Signs:
http://members.xoom.com/sclark/
AP Support Group:
http://www.geocities.com/SoHo/Gallery/6412/
Lots of arthritis and health links:
http://www.geocities.com/SoHo/Gallery/6412/supportlinks.htm

MINNEAPOLIS, Sept. 1 /PRNewswire/ -- MGI PHARMA, INC. (Nasdaq: MOGN),
today began co-promoting Azulfidine EN-tabs(R) (sulfasalazine delayed
release
tablets, USP) Enteric-coated in the United States with Pharmacia &
Upjohn
(NYSE: PNU) for patients with rheumatoid arthritis who have responded
inadequately to nonsteroidal anti-inflammatory drugs. MGI PHARMA is
promoting
Azulfidine EN-tabs through its rheumatology-focused sales force. This
co-promotion relationship between MGI and Pharmacia & Upjohn for
Azulfidine
EN-tabs was previously announced on July 15, 1999.
Charles N. Blitzer, MGI PHARMA's president and chief executive
officer
said, "MGI's field sales force is now fully trained for promoting
Azulfidine
EN-tabs to the rheumatology community and is excited about its growth
potential in the United States. Based on clinical and economic factors,
this
product could play a much larger role in the treatment of rheumatoid
arthritis. We believe MGI's sales force will be quite effective at
delivering
a balanced message to the prescribing community about treatment options
and
the role that Azulfidine EN-tabs have in the treatment of rheumatoid
arthritis. As a result, we anticipate a steady increase in Azulfidine
EN-tabs
sales."
--
Clark Signs:
http://members.xoom.com/sclark/
AP Support Group:
http://www.geocities.com/SoHo/Gallery/6412/
Lots of arthritis and health links:
http://www.geocities.com/SoHo/Gallery/6412/supportlinks.htm

The Rheumatoid Disease Foundation lists the above drug as their first
choice in their anti-amoebic protocol. Does anyone have the pharmacy in
Canada and the one in the US they say carries this?
And what is the amount they recommend?
Thanks. I need this info by Wed., Sept. 8, if possible, for my doctor
appointment.
Hope
krhess@...

Hi,
Does anyone know of a good AP doctor in the Northwest suburbs of
Chicago? I live in Crystal Lake. I am on HMO Illinois, so I have to
find doctors on their list. The rheumatologist I have seen is very far
away and knows nothing about the program.
Thank you,
Gloria

Here is Sharon Briggs' story with documentation - long but fascinating
reading and relevant to all of you on this list. If you try to contact her
she often does not answer for a long time, but those of you in her area of
CA may want to get in touch.

Dr. Chiu,
Last week, I told you that my ANA was positive for the first time in the 10
yrs since I've had RA. I found out that the ANA was 1:1240 but my rheumy
doesn't think its Lupus. He thinks its vasculitis because of my persistent
fever and red spots on my ankles. He wants me to start Imuran. Since I am
evidently unable to do the AP anymore since hypersensitivity in Jan.99,
what do you suggest. Sould I take Imuran?
I'm pretty near tears because I so much wanted not to take any more immune
suppressants. I wanted to build up instead of destroy my immune
system.....but I also want to live long enough to see my next grandchild
which is due in May 2000.
Any imput from you is greatly respected and appreciated.
Kinda down and out right now,
Joyce

Hi,
I was just reading Paula's long post containing the info on various
antibiotics. I was particularly concerned to see that Prozac and other
antidepressants can affect the uptake of Vibramycin (doxy). I take
Vibramycin 100mg (2 times a day). I also take 40 mgs of Prozac (I tried
several other meds. first but they made me even more tired) and I take 15
mgs. of Adderall which is basically "speed," twice a day, when I get up
and around 2:00pm. If I don't take the Adderall, I can't force myself to
stay out of bed. The dose I take does not make me manic or nervous, but
I don't know anything about what the long term consequences could be. I
recently started taking a multivitamin, vitamin E, calcium, and magnesium
(Terrible night knee cramps), but I take these things in the middle of
the day, so they don't interfere with the doxy. I take ibuprofen a
couple of times a day. ( Many nsaids stopped working, so I am back to
this). Does anyone know if any of these meds are going to react in a bad
way or hurt the uptake of the Vibramycin for sure. Would moving the
Prozac and/or the adderall two hours away from the Vibramycin help? The
worst thing about this disease is feeling that I am my own doctor
essentially.
I used to take Minocycline for over a year and I was really well
during that time. You can see my story on the web page. I was doing
great, but I started noticing that every time I got a bruise on the lower
half of my body, it NEVER went away. This turned out to be because the
mino was leaving a greyish-blue deposit at the bruise site. This has
turned out to be permanent, and a couple of my lower front teeth started
getting dark grey at the root. I was vain about this so I finally gave
up the minocycline in exchange for Doxycycline. I started this 1 1/2
years ago.
I was just getting over the herxing after about a month when I found out
my insurance will pay for the Brand, so I thought it might be better and
switched. The herx came back much worse and wouldn't leave so I lowered
the dose to 100mg a day. I have not been well since then, having
particular trouble with my wrists and hands and my knees. I think the
pain contributes to poor sleep which makes me even more tired. A couple
of weeks ago, I decided to go back up to 200 mg a day and I actually feel
better for the first time. My husband says he wouldn't care if he turned
blue as a smurf, he would go back on the Mino. I was able to go from 200
mg a day of mino to 100mg every other day with no pain, but I can't cut
the Vibramycin, I guess. Any medical advice would be appreciated.
Thanks,
Gloria Tate
RA 14 years, spread to almost every joint while on standard RA meds.

Dear Group:The enclosed URL contains a useful health information link web
site:

Please delete me from your addressees.

Linda, this is for you. The post is long, but I think many of you will be
interested. Nicolson is brilliant, probably one of the best scientists on
earth today. He lists several antibiotics which work against mycoplasma
infections. You will find this list in the second half of this post, so keep
scrolling. These antibiotics also work for lyme disease and chlamydia
pneumoniae (not sexually transmitted). He also mentions some natural immune
system enhancers some of you may want to try.
Best wishes,
Paula Carnes
above the suggested 10 mg/kg/day have been shown to produce hearing loss in
some patients.

Hi Everybody,
I am very interested to know what you all have to say about diet
and AP.
1. What is the Protein Power diet?
2. What is the Dr Mercola diet?
3. What is the Zone Diet?
Anybody?
Thanks,
Glenda
RA 2 3/4 yrs, AP 2 1/2 mo. Minocin100 mg 2Xday, Ultram 50 mg 2X day
Hypothyroid 7 yrs, Levothyroxine 125 mg/day
Osteoporosis 8 mo, Fosamax 10 mg/day, Prempro .625 mg/2.5 mg/day
From: arjay <arjay@...
My doc believes the Protien Power diet is a good all around diet. I
Snip
From: Bryan410@...
Hi Group:
Yesterday my AP doc strongly advised me to straighten up and fly right
and
rigidly follow a diet more conducive to alleviating the RA suffering. He
said diet was at least as important as the minocycline in the AP regimen.
Dr. Mercola says about the same thing at his web site.
From: MHOLMES@... (HOLMES, MARK T.)
The docs I've been to don't give much credence to the theory and no
advice
other than to eat a healthy diet (and I doubt they have any idea what
that
is). I've been on a healthy diet for 4 months now (the Zone Diet -
similar

Hello group,
I only became aware of this group a couple of days ago and have been
bombarded with e-mail since. I've been learning a lot from everyone's
participation. I've have rheurmatoid arthritis for two years, am 50, and
keep getting worse to the point where I am thinking that if I continue to
deteriorate I'll check myself into an opium den in Burma and say goodbye to
everyone I love. It's been very depressing to give up running, then
racquetball and tennis, then biciclying and to become weaker and weaker to
where I can't do even one push-up or pull-up. Everything hurts. I'm
starting a new nodule near my elbow. My hands and wrists are swollen, my
shoulders ache, my hip,knee and anke ihibit my walking and the missionary
position is very difficult with the pressure it puts on my arms etc. Major
bummer.
My rheumatologist started me off with a dose of 120mg. of prednisone in
the rear end and it was a miracle. Even though I hadn't nearly the number of
swollen and sensitive joints I have now, the pain disappeared and I thought I
had been healed. He gave me no warning about side affects. About a month
later the pain began to return and at eight weeks was bad enough to warrant
another shot. I've been getting shots of prednisone every 4 to 8 weeks for 2
years now and the doc wants me to start doing the gold shots. When I was
first seeing him, I told him I'd rather go live in a cave than do something
as extreme as gold shots. Now, I am considering doint it after watching my
hands begin to deform and suffering through each day.
I only heard of the minocin treatment last week and it has given me
hope. I'm afraid of what my rheumatologist will say when I tell him I want
to try this treatment. He is such a straight M.D. that I think it will freak
him out. I went to see another somewhat alternative doctor about 5 months
ago and I know my rheumatologist was threatened. The new doc stressed diet
and stress, did blood tests and stool tests to try and find possible sources
and gave me so much more information that the actual rheumatologist that I
was very impressed and even began to feel that my rheumatologist was really a
quack. I've really changed my diet, quit smoking and cut way back on
drinking. I'm trying to be more mellow but I keep feeling worse and worse
and actually look forward to my next prednisone shot. I really don't want to
take it but it seems to be the only thing that works. It is definitely
taking it's toll on my body and I think I am withering away. Reading about
Dr. Brown's low dose antibiotic treatment has me exhilarated and I want to
begin immediately. Can anyone suggest a way to get my doctor to do the
injections and prescribe the minocyn? Or recommend someone who will in the
Santa Cruz or Monterrey Bay area? Thanks alot. Sincerely, Philip

Ok it worked, Hi i'm Linda. Try to introduce myself here,ok i'm a 28 yr old mom
of 2, i've had problems since i was 18, i've been diagnosed with arthritis at 21
but not rheumatoid,but my knees is where i started having problems,as in
popping,achey & at times they give out on me. That was back in 1992,in 1995 i
started having problems in my back,it's sort of a stabbing/burning feeling,gets
so bad i can hardly breathe,1996 i was diagnosed with carpral tunnel syndrome in
my right wrist but in the end of 1997 it was my whole right shoulder
achey,popping real bad & hurts almost all the time,in the beginning of 1998 my
left shoulder was affected the same as my right,my belief is if it was
fibromaylagia wouldn't it have happened all at once? or could it progress
through the yrs like it did? also i have these attacks where i'm badly
fatigued,achey (like i have the flu) hot/cold flashes, what do u think? The dr's
where i live are quacks,they look at me like there's nothing wrong so therefore
don't help me, i got to looking cause i've had a bad 4 days this past wk, any
input would be appreciated, Linda

hii was watching TV I was confuse, stept is the 9 MONTH, next week is 9 (th
99 is year 2ooo. the is right its n 2000 its next week DID you all know
not me guess iam slow or didnt think about it year 99 so tv says to
becareful of our comm, so ill shut it off to be on safe side ill shut of 8
before 9 then turn on 10 just to be safe yes iam covered for 2000 but i want
to be sure some taking their money out of BANK JUST small amounts just to be
sure what have anyone got to loose they said well i do wish you all luck ok,
gee fingers still sore, bending bad joints 4 DR says no way will they cut or
operaite , on fingers so pray for pain i pray for all of you so so many
times PAIN IS PAIN I dont CARE what we all got pain is still with US HUN

In the Dr. Mercola website he mentions calling his office for a list of
'natural antibiotics". Does anyone have this list?
TIA,
Hope

test please ignore

Did I read where someone was taking Embrel? The Dr. is on this kick
about trying it. I would like to find out about it so I can tell him one
way or another. (I'm not sure if I spelled it wright Enbrel,Embrel?)
I have been on Mino for 16 months and it seems to have stopped working.
I was doing great for the past 6 months and now the last 3 weeks
WAM....I am getting hit hard with flares. I was wondering about changing
to Doxy.
Any suggestions ?
Thanks
Gail RA , AP 16 months

Guess not..........ignore posts......Joey

Anyone awake? I am - wide awake. Wanna talk?
Joey

I have a question about Dr. Mercola's diet. He seems to be in favor of the
"Blood type diet"........then eliminates nearly all the foods that are "highly
beneficial" - to my particular blood type, anyway. On his diet, I can have
(in moderation and with restrictions) olive oil, butter, potatoes, eggs,
veggies, buffalo/venison/lamb, beans, and nuts/coconut/stuff .......some of
these foods I should avoid on the blood diet, and some of these foods I don't
eat.
Anyway - my question is how can I benefit from the blood type diet and adhere to
Dr. Mercola's diet?
Also, does anybody follow the doctor's diet to a "T"?
One more thing - it is not a good idea to cook in aluminum pots because of
leaching............does this same principle apply to aluminum foils? Is there a
difference between cooking in tinfoil, and wrapping food in tinfoil, as far as
the leaching is involved?
Be well.......Joey

Hi Group:
Yesterday my AP doc strongly advised me to straighten up and fly right and
rigidly follow a diet more conducive to alleviating the RA suffering. He
said diet was at least as important as the minocycline in the AP regimen.
Dr. Mercola says about the same thing at his web site.
It seems that most of the postings in our group that relate to nutrition
address vitamins and other supplements. Very little seems to be posted on
actual diets save for an occasional reference to a food that aggravates the
RA.
My question to the group is how much importance is YOUR doc attaching to your
diet? Did he/she give you some kind of suggested menu? How important do YOU
think it is? Can we generate some discussion of this?
Good health to all,
Harry

Dear Group:The enclosed URL contains the full text of the origional article on
mycoplasmal infections in chronic
illnesses:Address:http://www.haciendapub.com/article24.html

Hi all,
I wrote a brief intro to the list, but would like to fill in some details.
Please respond if you have some clues or suggestions for my case.
I developed joint pain about 3 months after giving birth to a stillborn
child. This was 27 years ago. The join and muscle pain have continued ever
since with no clear diagosis, except for about 9 months when the pain went
away. I was treated with gold injections and Motrin with no noticable
effect.
About 10 years later I developed Hashimoto's or autoimmune thyroid disease.
This was successfully treated with synthroid until 4 years ago.
I developed skin rashes which seemed to be psoriasis and lupus, but lupus
tests do not come up positive, although I have a positive ana and some
symptoms.
I also had chronic candidiasis for many years, about as long as the
Hashimoto's for which no medication was effective. Once I took flagyl for a
week and this eliminated symptoms for many months thereafter, but eventually
the candidiasis returned.
Four years ago I developed a "classic" case of Chronic Fatigue Syndrome.
Through the grace of God I found a doctor who tested me for mycoplasma
incognitus for which I was positive. I began treatment with 200 mg of
doxycycline to no effect. I then took minocyn for 1 week. I could tell it
was affecting the CFS symptoms but it made me too dizzzy to stay on it. At
that time I began taking 500 mg of Zithromax a day. Within six weeks I
began to improve. I have never had Herxhiemer reactions but did steadily
improve. I stayed on Zithromax at that level for 2 years. When I went off
the Zithromax for 8 weeks I totally relapsed to the level I was when I was
the most sick. I still take 500 mg of Z. every other day.
Strangely, during the first year when I was sickest all my joint and muscle
pains disappeared. The longer I was on antibiotics and recovered from CFS
the worse the original joint pains were. I would be interested in any
theories on this.
Three months ago I started on injected human growth hormone as my levels of
hgh after exercise are <.5 or non-existant. IT seems that whatever I have is
damaging my endocrine system. However, my thyroid seems to be improving as I
have been able to lower my dose of synthroid and get off of cytomel
altogether and still hold healthy levels of thyroid, including TSH, T4 and
free T3 levels.
I do take several supplements which I won't go into now. If any of you have
ideas regarding my case, I would love to hear them.
Your friend,
Paula Carnes

.I have been on Biocraft generic minocycline since 11/04/98. I take 100 mg
on the even days of the months. This works out to 15 doses a month. I'd do
MWF but this is easier for me to remember. I got the herx's as others get
from the name brand as well as Lederle generic. The arthritis retreated
along the same path it advanced. Then places of old injuries flared and
retreated. At present I have a little stiffness in my right hand's little
finger.
I am favorably impressed from this treatment, especially right now as I have
been dealing with excruciating pain in my right knee. This knee thing is
not RA. It is from an untreated torn meniscus that was not operated on in a
timely manner thereby tearing up the cartilage. I am on the list waiting to
be scheduled for total knee replacement. In the past, the knee situation
would have caused a massive flare.
Also, before starting the antibiotics I had developed some sensitivities to
specific foods that would send me into a flare. As my RA subsides the food
sensitivities have diminished.
The AP is working for me.
Denise J

For those of you interested in Joe's Protocol, this will explain in detail:
http://www.arthritistrust.org/antipro.htm
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day MWF;Zithromax 500mg T,Sa; Lodine
400mg 3x/day;Zone Diet;;Slippery Elm;Fish Oil(9 caps/day);Milk
Thistle;bromelain;boswellia;glucosamine(1500mg)
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html
ICQ 18123139

Hello group,
Another month or so has passed and I thought it was time to post another
update. I am very pleased to say that I am still doing great! I am at
90% relief of symptoms! I almost can't believe it. The brain fog has
lifted, the lethargy, the apathy, the pain is almost all gone! I still
have some swelling in my knees and some synovitis in my elbows, but they
don't hurt. My hands, which had been the worst affected body parts have
completely cleared, zero pain. I can feel that there's some damage in
there (and my NIH MRIs and x-rays confirm this as well), but the active
disease seems to be gone.
This morning our office manager brought her pet rabbit in to work (she
has a vet appointment later this morning) and I stopped by to play with
it for a few minutes. Funny thing is, I happened to notice that I had
squatted down (all the way down to the floor) and didn't even realize
it! Plus I was able to stand up--no problem!
Call me the biggest skeptic in the world, but I am still not 100%
convinced so I live with the fear that all the symptoms might return,
but it's been about 10 weeks now and I've held 75% reduction for the
entire time, with one exception.
(quick update on my protocol. For the first week or 10 days I took 300mg
Allopurinol three times a day and 2 consecutive days a week I take 2
grams Metronidazole after dinner. I started both those medications on
the same day. I also have continued to take Minocin 200mg twice a day, 3
days a week, as well as olive leaf extract 2 caps 3 times a day,
slippery elm, tons and tons of acidolphilous and naproxen as needed,
plus vits and minerals)
After I had complete the first 6 weeks of treatment, since I was not
totally clear, I decided to run through another 6 weeks. So I took 300mg
of Allopurinol three times a day for another 10 day course. On a
thursday I started the Allopurinol and that evening I took 2 grams of
Metronidazole. Friday was miserable. I was back to vomiting in a violent
fashion. The entire weekend was horrible, severe nausea through
saturday, and saturday night I starting flaring in the joints (and of
course the obligatory night sweats, fever, malaise and general flu-like
symptoms). This when I felt I had actually lost ground, and I was
concerned the RA was coming screaming back. Tuesday the herx started
breaking. By wednesday night I was feeling better than I had in a year!
Thursday was time again to take Metronidazole, but this time, I had no
herx! No nausea, no flu, no flare, I actually made it through the entire
weekend without losing ground at all (mind you I was still taking
allopurinol). I do not think that the nausea was caused by the drugs, I
think it was a herxheimer reaction. This really drove home the point to
me that the Allopurinol is a very important part of this AP and that it
should be taken according to protocol (900mg a day for 7 to 10 days).
The literature is quite clear that smaller doses of either Allopurinol
or Metronidazole will not be effective!
Some of you may know that Mark Holmes and I seem share quite a bit. We
both have sudden-onset severe RA. We both started Minocin approx. 2 to 3
months after major symptoms presented themselves. We both have the same
rheumatologist. We both are in the same NIH study and have the same
rheumatologist at NIH. The only major difference, other than our ages,
is that he got sick about 6 months before I did (age before beauty? <big
grin
their prognosis and recommendations are also 100% applicable to me
(including their discussions about erosions and methotrexate). I could
have written some of his more recent post as I have had the same
discussions with the exact same people. Except for my last visit. I went
to NIH for my 6 month follow up about 2 weeks after I started the
metro/allo protocol. At that time I was already feeling much, much
better. They did all the standard stuff, took blood, scheduled my for an
MRI and spent a lot of time trying to talk me into taking methotrexate,
while telling me that Metronidazole and allopurinol couldn't possibly be
doing anything to help. Well, I went back last week to go over the MRI
and bloodwork. Guess what? For the first time in a year, my labs are
starting to go down! My rheumatoid factor was down from 463 to 265! My
ESR is now 100 (still very high) but that is down from 140. My
C-reactive Protein was also down by 30 to 40%. I am no longer anemic. It
was all seemingly good news. I still have a ways to go before the labs
return to normal, but it sure is nice to see those numbers drop, and
drop 30-40% across the board! Funny, on that last visit, my NIH rheumy
didn't try to talk me into methotrexate, for the first time ever! He
also accepted a gift from me, a copy of Dr. Clark's "Why Arthritis" and
he promised to read it. (side note: Isn't it appalling that an highly
trained NIH research physician had never read this book and was quite
frankly somewhat ignorant of antibiotic protocols and the mycoplasma
theory?!) His eyes seem to open wide for me, I just hope maybe we have
started to crack his traditional armor.
I am sure glad I resisted the MTX, as I too, like Mark was seriously
considering it.... I just hope anyone considering MTX would consider a 6
week trial of this protocol before you take that plunge. I don't think
you have much to lose, as these drugs are fairly safe (certainly far
safer than methotrexate).
So that's about it for now. I plan on completing the second 6-week trial
and reassess the situation from there. I will continue to keep you all
posted of my progress, good or bad!
A couple other people have written me privately to say that they too
have started this AP, has anyone else had any success? and if so or not,
what protocol are you following?
Again, I am open to discussions either privately or within the group for
anyone wishing to discuss.....
Take care,
j.

Hi,
I'm a new member to this group and have been reading for some time before
contributing. I have several things I would like to ask / comment on.
I am a UK expatriate working in Botswana. My arthritis background is that I
have had it for 5 months. What 'it' is I do not know as I am still undiagnosed.
I've recently returned from Pretoria where I saw Dr Ingram Anderson, supposedly
the best rheumatologist in South Africa. He has a 12 months waiting list. To
get to se him I had to admit myself as an emergency into a private hospital
where his patients occupy the whole of one floor. After 2 days of blood tests
he was unable to diagnose me. So far the three doctors I have seen will commit
themselves to a diagnosis until a rheumatoid factor appears in a blood test or
some other test. I was not impressed with Dr Anderson, although I must say that
the other three patients in my ward were. They were impressed with him because
he relieved their pain, for example in the case of a man who had travelled 500
miles up from Durban, 2 years ago he was in a wheelchair and Anderson had him up
and walking within 24 hours. He did this by injecting something into his
joints. All three were back for their six monthly top up of these injections.
None of the patients knew what they were being injected with; I asked the nurse
and she didn't know what it was. I was amazed at how people would allow
themselves to have injections and take drugs without knowing what hey were.
That said, I suppose the relief of pain is enough. That's the background now to
the questions .. . .
Most of the traffic in this group is well developed in terms of it is often
about a detailed aspects of a very specific item. As I'm new to arthritis and
new to the group I am just starting on the learning curve and so I am sure most
of my questions will have been asked before.
1. Does anybody have a list of NSAIDs with their effectiveness and side
effects. I've seen a lot of conversation about Relafen, I asked my doctor here
and he'd never heard of it. I'm on Mobic with Meloxicam and I've been on it now
for 5 months and it seems to be working quite well with few side effects. Am I
the only person on Mobic?
2. Does anybody have a list of DMARDS and their effectiveness and side effects.
3. I have formed to view that I have some form of rheumatoid arthritis. I have
also formed the view from my research todate that there are either many
different types of rheumatoid arthritis or it affects different people in
different ways. That said, if anybody has a detailed description of the signs
and symptoms that help diagnose this disease then I would appreciate it. (I have
downloaded some stuff of the Internet but it is quite general).
I wish you all well,
Thanks
Mike

Can anyone help with any other doctors in Connecticut? Please email
dchiaro@... as this person isn't in the group.
Thanks, Chris.

What can I do to treat rheumatic deflamation of the pubic bone which I
have heard trouble eith for the last 5 years ? I only take
anti-inflamatorry tabs.
Yours
Dan
Dan_gacheru@..., dgacheru@...

Can anyone tell me what exactly the RA or RF factor measures. Is it how
actice the disease is, if so why can your sed rate be low and the RF
high. My RF was 301 and sed was 19. Is there some kind of table that
says RF 10-99 means X; 100-199 means y; etc. I go to a GP so don't
really get as good of answers to some RD type questions. I also haven't
had any of the x-rays so just guess what's going on. In general I feel
pretty good, but would like a lower RF. I've tried most of the test
sites and just get how the test is done---know that; or what's
positive---know that. But what exactly does it measure?
Julie

Hi, Please comment on how important it is to take the brand name Minocin,
versus taking the Minocycline generic brand for the antibiotic therapy. Is
there a generic brand made by a certain company which is as effective as the
Minocin? Thank you. I would appreciate any comments you may have.

The Medical Sentinel is the official peer-reviewed journal of the
Association of American Physicans and Surgeons. The Sept./Oct. 1999
issue contains an article by Garth Nicolson entitled "Mycoplasmal
Infections in Chronic Illnesses: Fibromyalgia and Chronic Fatigue
Syndromes, Gulf War Illness, HIV-AIDS and Rheumatoid Arthritis. The
citation is vol. 4, no. 5, pgs. 172-75 with references continued on pg.
192. The publisher sent out a press release embargoed for release today,
Monday, Aug. 31 at 12:01 AM Eastern. The press release is entitled
"Bacteria Tied to Chronic Illness" by Dan Vergano, correspondent for the
Medical Tribune. Here it is:
Slow growing infections may cause or promote a host of chronic
illnesses, including Chronic Fatigue Syndrome, Fibromyalgia Syndrome and
Gulf War Syndrome, according to one team of researchers.
"We;ve found a large subset of various chronic illnesses are
associated with infection," said Prof. Garth L. Nicolson of the
Institute for Molecular Medicine in Huntington Beach, Calif.
Specifically, infections caused by primitive bacteria known as
mycoplasms, he added. Symptoms such as fatigue, headaches, soreness,
joint pain and others overlap across many chronic illnesses, he noted.
And patients with these ailments have few treatment options because of
limited understanding about the cause of their signs and symptoms.
In a study prublished in the Monday edition of the journal Medical
Sentinel, the official, peer-reviewed journal of the Association of
American Physicians and surgeions, Nocolson and his colleagues lay out
the case for mycoplasmas as one of the culprits behind Chronic Fatigue
Syndrome, Fibromyalgia Syndrome, Gulf War Syndrome and Rheumatoid
Arthritis. In one study on 203 Chronic Fatigue Syndrome patients, around
70 percent had mycoplasma DNA in their bloodstream, indicating the
presence of mycoplasmas. In contrast, only nine percent of 70 healthy
individuals he compared them to carried such signs.
Another trial compared 200 Gulf War Syndrome patients to 62 healthy
military subjects. People with the illness were more than seven times
more likely to have mycoplasmal infections, said Nicolson.
Mycoplasmas lack many of the features of more aggressive infectious
bacteria, such as cell walls, than enable antibiotics like penicillins
to target invading germs. Because of their simple structure, mycoplasmas
reproduce slowly, using the machinery of invaded cells to produce their
energy and many of their synthetic molecules. Nicolson theorized that
individuals with immune systems compromised by a viruses [sic],
radiation or pollutants are at risk from mycoplasmal infections.
"The breakthrough is using new genetic tools to find and measure the
bacteria. We couldn't do that before," said Nicolson, who has adapted
the DNA analysis used by crime investigators to detect germ genes in
each patient's bloodstream. Once mycoplasmas are identified, Nicolson
provides antibiotic treatment suggestions to physicians who then treat
their patients.
"We really need to know more about these organisms before we can say
with certainty what illnesses they cause," said Joseph Tully, who
recently retired as chief of the mycoplasma lab at the national
Institute of Allergy and Infectious Diseases (NIAID) division in
Fredrick, MD. He added that physicians who treat chronic illnesses have
estimated that more than a quarter of their patients benefit from
long-term antibiotic treatment, which he said inhibits mycoplasmas long
enough for the body's natural immune system to wipe out the invaders. "I
think that treatment is fine as long as doctors tell their patient it's
experimental," he added.
Two federal efforts based on Nicolson's results are now underway seek
to determine whether antibiotics can cure chronic illness. One conducted
at Walter Reed Army Medical Center looks at the blood of Gulf War
veterans for signs of mycoplasms. The other, conducted at Veterans
Affairs Medical Centers nationwide, involves giving some
mycoplasma-positive Gulf War Syndrome patients antibiotics and others
dummy pills under rigorous experimental conditions designed to ferret
out the true effectiveness of the therapy.
End of Quote
Additionally, Nicolson will have an article coming out in the
September issue of the CFIDS Chronicle next week entitled "The Role of
Microorganism Infections in Chronic Illnesses: Support for antibiotic
regimens." And another peer-reviewed article is in press and will
appear in the European Journal of Clinical Microbiology and Infectious
Diseases.
Incidentally, patients can obtain a list of doctors in their state
who have expressed interest in Nicolson's work and who either use his
lab or who have received his materials by requesting the list from the
Institute for Molecular Medicine in Huntington Beach, Calif. The address
is given on their website at www.immed.org.

I read in Prescription for Nutritional Healing that recessed eyes is one of
the symptoms of acidosis, which is a condition in which body chemistry
becomes imbalanced and overly acid. Symptoms include sighing, insomnia,
water retention, recessed eyes, rheumatoid arthritis, migraine headaches,
abnormally low blood pressure, dry hard stools, foul-smelling stools
accompanied by a burning sensation in the anus, alternating constipation and
diarrhea, dificulty swallowing, burning in the mouth and/or under the
tongue, sensitivity of the teeth to vinegar and acidic fruits, and bums on
the tongue or the roof of the mouth.
Delaine

hi donna and ray gee glad to hear from ya, iam out catching sun cooling now,
so fingers are bad, it either scleroderma or RA or RAYNAUNDS take a pick i
say //////////////////onething about 3 deases is, you got to figure out
which one it is or all three. ok kido, iam on iam on
cuprimine.250 MG i dont know what AP is or mean
do you know////////////////gee maybe you can tell /////iam on PROCADIAxl60MG
PRILOSEC 20 mg i been on these since i got sick 1994 i was
on something wow DR got me off then he put me on these three, i smoke 2/1/2
pack of cir. a day, thrin,,////// i was 145now 180 wow hun gee i guit
smoking, but my two DR knew when they first sam me THEY knew i had
scleroderma rayaunds RA so 4 more DR came they took blood test wow they
came back ask how do you feel isaid good why he said there no cure marie i
dont want to scare you but scl, is no cure so ok but my fingers have got to
go i feel so good dr dont understand it but never change med. 5 years so now
i must came to a HALT, they dont want to see me now foe 6 month every 2, now
they said what are you doing, i said i took lifeguarid sull.erplement yes it
does help a lot, but //////////////////fingers////////// but the med never
makes me sick i do feel good befor icould not bend walk move bath shirt now i
can do all swimming its the ans trustme it is, gee i talk to much, how are
you doing please write me tell me about you ok, 1995 when i came down with
all three first ray.////////then scl............then RA......... within 1
month i had all three, first year i took ill quit then started walking
funny, bend bad, hands turn blue pain had to go to emy. hosp /////////
fingers started it bad first then oh hell started in here iam driving
everyone crazy, but you all are so nice to care god knows we need love
attention, someone who knows what pain is thanks all of you marie

"Chickens today are given large doses of tetracycline. I wonder where Dr.
Trentham got his chickens for his chicken collagen?"
This struck my funny bone because my first thought was how nice that those
chickens probably don't get rheumatoid arthritis.
I saw an orthopedic surgeon today and got a shot of cortisone in my right
knee. I have been living in excruciating pain these past two weeks. Now I
am on the list for knee replacement. I'm scared and, in a weird way,
relieved. He said one out of ten surgeries fail and I forgot to ask what is
done in that case? Anyone know? I have had three cortisone injections
since January. He says I can have one more before surgery but that I have
to have one and a half months between the last injection and the surgery.
The knee is not bad from RA; it is an injury that didn't get surgical repair
in a timely manner and therefore got all torn up because of a torn meniscus
flopping around.
I do have something to be happy about in all of this. Even with the strain
and stress of all of the knee problems my rheumatoid arthritis has not
flared--not one little bit. I have a little stiffness in my right little
finger--no pain.

Yoly's pic is up on the supportgroup site now.
http://www.geocities.com/SoHo/Gallery/6412/supportgroup3.htm
sarah
--
Clark Signs:
http://members.xoom.com/sclark/
AP Support Group:
http://www.geocities.com/SoHo/Gallery/6412/
Lots of arthritis and health links:
http://www.geocities.com/SoHo/Gallery/6412/supportlinks.htm

Please unsubscribe me

Can people post to the group or to me privately which probiotics they
have found most effective and/or least expensive (not necessarily
compatible, I know)?
And, does anyone feel Natren products are worth the extra cost?
And does anyone agree that mixed products such as Flora Balance are
ineffective as some strains will overbalance the others in the mix?
Thanks.
Hope
(still waiting for results on myco. tests)

About a week ago, someone mentioned a source for myco. testing and I
believe gave the url www.sky.net/~dporter/MSCFSABX.htm
which contain the article by Dr. Luther Lindner "MS and CFS: A Bacterial
Etiology?" In the updated ('97) version he does not identify this
mystery bacteria. Can anyone tell me if it has now been identified? Is
it mycoplasma or what? Has anyone on this group send in blood samples to
Pathobioteck Diagnostics to be cultured and then followed his
recommended AP and nutrients?
Thanks,
Hope

Jean - got it! Twice! I didn't know that happened, and it shouldn't be a problem
to post to the list so others don't rec. duplicates. Thanks for the info.
Be well, Joey

Dear Friends,
Hi! I have been off line for several months. Hope everyone is doing well
:-)
I am switching NSAIDS from Naproxen to Vioxx. Has anyone had any
positive and/or negative experiences with Vioxx? I sure would appreciate
your thoughts.
Many thanks!
Sue :-)
--
Susan S Estridge
E-Mail : sestridg@madison
Internet: Sue_Estridge@...
Phone : (704) 649-2411
FAX: (704) 649-2020

Something to watch out for if you are on Cox-2 inhibitors, get those eyes
checked!
Evidence of Constitutive COX-2 Expression in CNS Reported
VIENNA, Aug 26 (Reuters Health) - Cyclooxygenase 2 (COX-2) is
constitutively expressed in human CNS tissue, according to research
presented this week at the 9th World Congress on Pain. As a result,
COX-2 inhibitors may carry unanticipated risks, including the risk of
glaucoma.
During the main congress session on COX-2 inhibitors, Dr. Gerd
Geisslinger of the University of Frankfurt, Germany, reported that his
group has identified constitutive COX-2 expression in neurons of the
spinal cord ventral horn. This central nervous system (CNS) COX-2 may be
affected by COX-2 inhibiting drugs, he said.
In the following presentation, Dr K. Brune, of the Institute for
Experimental and Clinical Pharmacology and Toxicology in Nuremberg,
Germany, reported data on the effect of COX-2 inhibition on a specific
part of the CNS: the innervation of the eye.
"COX-2 is constitutively expressed in the ciliary body of the human
eye," Dr Brune told Reuters Health at the meeting. "This structure
regulates the production of the aqueous humour and regulates the aqueous
humour pressure." He examined the effect of the COX-2 inhibitor
celecoxib on intraocular pressure, using his own eye as the test
specimen and the eye of a younger physician colleague as the control.
Prior to celecoxib treatment, Dr Brune's eye showed a daily rhythmic
variation in intraocular pressure. Shortly after celecoxib initiation
the pressure froze at the high end of his normal range and remained
there, apparently due to interference with ciliary body regulation of
intraocular fluid production.
"This indicates that we have to explore much more cautiously the use of
the highly specific, highly active agents," Dr Brune concluded.
Copyright © 1999 Reuters Ltd. All rights reserved.

Sarah wanted me to pass along that she is having trouble using her email
today, but wanted to post that Yoly's pic is up on the links page now which
you can view at http://www.geocities.com/SoHo/Gallery/6412/supportgroup3.htm
Mark

While reading alt.support.arthritis (yep, I really do!), I picked this up today
- sounds promising - too bad it's gonna take a few years - hope it turns out
better than Collarel , the drug that Autoimmune,Inc. gave up on today.
http://www.seven.com.au/drjohn.asp
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day MWF;Zithromax 500mg T,Sa; Lodine
400mg 3x/day;Zone Diet;;Slippery Elm;Fish Oil(9 caps/day);Milk
Thistle;bromelain;boswellia;glucosamine(1500mg)
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html
ICQ 18123139

While doing a search on minocycline at the www.nih.gov site, I ran across this
document which was drafted this year - gives a few clues as to what may be
worked on in the near future.
http://www.nih.gov/niams/grants/rfp/99-002/attach02.htm
If you do a search for minocycline, you will find some interesting historical
reading on the MIRA trials,etc.
Also perhaps of interest is the mission statement of The National Institute of
Arthritis and Musculoskeletal and Skin Diseases (NIAMS) found at
http://grants.nih.gov/grants/policy/emprograms/icd/niams.htm
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day MWF;Zithromax 500mg T,Sa; Lodine
400mg 3x/day;Zone Diet;;Slippery Elm;Fish Oil(9 caps/day);Milk
Thistle;bromelain;boswellia;glucosamine(1500mg)
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html
ICQ 18123139

Here's a company I was watching for a while and hoping they would have some
success. So much for that.

A different question about computers:
Can someone tell me why I keep rec'ing duplicates of posts? LOTS of them. Is it
my PC, is anyone else getting duplicates on a regular basis.....?????
Joey

Hi all,
I was wondering if anyone else has greying of the teeth, I am on mino
MWF and Lincocin and have just been on a course of Klacid for a respiratory
tract infection and even though none of these mention the discolouration of
teeth in adults has anyone else had it?
Julie ra Jan 97 ap May 98
Townsville Australia
jamulder@...
http://www.ultra.net.au/~jamulder/

FREQUENTLY ASKED QUESTIONS ABOUT ANTIBIOTIC THERAPY
1. HOW DOES ANTIBIOTIC THERAPY DIFFER FROM CONVENTIONAL THERAPY?
Antibiotic therapy is based on the theory that inflammatory rheumatic
diseases such as rheumatoid arthritis, scleroderma, lupus, juvenile
rheumatoid arthritis, polymyositis, ankylosing spondylitis, etc. have an
infectious cause, namely mycoplasma and other bacterial L forms. Using low
dose antibiotics, particularly from the tetracycline family, the disease is
attacked at its source. This therapy is equally effective in patients with
severe and/or long standing disease as it is in those with mild to moderate
disease. Thomas McPherson Brown, M.D. (1906-1989), a renowned rheumatologist
who practiced in the Washington, D.C. area, pioneered this treatment over
fifty years ago and successfully used it to treat over ten thousand
patients.
The toxic medications used in conventional therapy are prescribed to try and
control or suppress the symptoms. They may or may not work. If they do work,
it is only a matter of time before they either lose their effectiveness or
the patient develops side effects, forcing them to discontinue usage. The
patients often are left worse than before they started the medication.
2. WHAT ANTIBIOTICS ARE USED AND WHAT IS THE DOSAGE?
The ultimate decision about antibiotic therapy for you should be made by
your physician. While this therapy is effective for the majority of
patients, it will not work for everyone. Treatment must be tailored to the
individual patient.
Typically, patients with severe and/or long-standing disease are started
with a series of daily intravenous clindamycin for five to seven days. (Dr.
Linda Martin of Plano, Texas is using lincocin with equal success.) The
first two days, 300 mg. of clindamycin would be administered in 250 cc 0.9%
saline dripped over a 50 to 60 minute period. (D5W is not used because of
the yeast overgrowth found in most of these patients.) The third and fourth
day 600 mg. is given, and the fifth and any subsequent days 900 mg. (A.
Robert Franco, M.D., a rheumatologist in Riverside, California often
prescribes a seven- day series every five weeks four times and then
reassesses the patient's need. In some of his patients with rheumatoid
arthritis, Dr. Franco is substituting Zithromax 250 mg. twice daily two days
a week in place of the IV clindamycin.) After the initial daily series, IVs
may be administered weekly, every other week or as the physician determines
for the individual patient. The IVs are continued until all lab figures
return to normal. Lab figures should then be monitored for a time to be sure
patient remains stable before discontinuing the IVs. For sensitive patients,
a local anesthetic may be applied to the injection site.
Physicians have reported some success using clindamycin orally and in
intramuscular injections. Orally, the single dose is 1200 mg. once a week.
For intramuscular injections, 300 mg to 600 mg. once a week.
When the initial course of IVs is completed, patients begin oral therapy -
minocycline (Minocin) or doxycycline 100 mg. once or twice daily, or
tetracycline 250 mg. to 500 mg. twice daily Monday, Wednesday and Friday.
Tetracycline is more apt to react with food and must be taken on an empty
stomach. The antibiotic and calcium supplements (including dairy products)
should not be taken at the same time. This dosage is effective for most
patients. However, five or even seven-day a week doses may be necessary in
some cases. Patients with mild to moderate disease are started with this
same oral therapy. Some reported sensitivities to the tetracycline drugs may
be caused by the drug being introduce