Auto-immune diseases

I read somewhere--in Prevention, I think--that 10 cherries a day are all you
need to help with inflammation.
Linda

Since this topic and the Great Smokies Diagnostic Lab have been mentioned
lately, I thought some of you might be interested in this.
Linda
DATE: July 15, 1999
SPECIAL ANNOUNCEMENT
(Great Smokies is issuing the following news release for general
distribution.)
FDA CLEARS INTESTINAL PERMEABILITY TEST KIT
Asheville, N.C.: Great Smokies Diagnostic Laboratory (GSDL), a
private, rapid-growth Functional Medicine Clinical laboratory,
announced today receipt of 510(K) market clearance from the Food and
Drug Administration (FDA) for its Intestinal Permeability test kit,
utilizing the lactulose-mannitol challenge drink. Used in the
non-invasive assessment of intestinal permeability, the test
demonstrated its superior sensitivity as compared to the existing
d-xylose test in measuring intestinal permeability, a measurement
used in the diagnosis of gastrointestinal malabsorption syndromes,
such as celiac disease, colitis, Crohn's disease, and Irritable Bowel
Syndrome.
What is intestinal permeability?
Intestinal permeability refers to impairment of the intestinal
mucosal barrier, which is central to healthy absorption of nutrients
and protection against bacterial and toxin translocation from the
gastrointestinal (GI) tract to the blood stream. Disturbances in
mucosal barrier function can lead to malnourishment and increased
permeability ("leaky gut") which can cause or contribute to disease
conditions throughout the body as diverse as asthma, arthritis, and
food allergies.
What are gastrointestinal malabsorption syndromes?
Although the Centers for Disease Control (CDC) has not gathered
statistics specifically for malabsorption itself, tens of millions of
Americans suffer from related gut mucosal integrity conditions
responsible for enormous healthcare expense. Arthritis, for example,
strikes over 43 million annually at a cost of more than $65 million
(CDC), while functional gastrointestinal disorders are responsible
for an estimated 2.5 to 3.5 million visits to doctors every year and
some $40 million in medication expenditures (University of North
Carolina Functional Gastrointestinal Disorders Center). The incidence
of these health disorders and other intestinal permeability
related-conditions continues to grow at an alarming rate.
The growing use of non-steroidal anti-inflammatory drugs (NSAIDS),
which can irritate the mucosal lining, has contributed significantly
to an increase intestinal permeability worldwide. Intestinal
Permeability Assessment can be used to monitor treatment of
NSAID-related damage to the mucosal barrier and intestinal
permeability-related to other irritants in the GI tract. An estimated
20% or more of patients taking NSAIDS develop systematic or
endoscopic gastrointestinal toxicity with incidence increasing among
the elderly, who account for 40-60% of NSAID users (Canadian Medical
Association Journal 1996; 155: 77-88).
Inflammatory and detoxification disorders, impaired healing following
surgery, failure to thrive, and complications from radiation and
chemotherapy for cancer have all been linked to intestinal
permeability. Recent research has consistently underscored the value
of Intestinal Permeability Assessment in GI disorders such as Crohn's
and Irritable Bowel Syndrome, as well as traumatic care, geriatric
interventions, adjunctive AIDS therapy, and pediatric care,
especially in the treatment of allergies and immune disorders.
GSDL is the first commercial laboratory to offer Intestinal
permeability testing. Utilizing state-of-the art technology, GSDL has
developed a comprehensive range of functional assessments in the
areas of gastroenterology, endocrinology, cardiology,
nutrition/metabolism, and immunology. The laboratory conducts
aggressive, ongoing research and development for innovative
functional assessments.
###################################################
NOTICE
Great Smokies Diagnostic Laboratory provides this information as a
service to subscribers. This information is for sole use of a
licensed healthcare practitioner and is for educational purposes
only. It is not meant for use as diagnostic information, and reports
of research findings should in no way be construed as treatment
recommendations. Linking to other sites does not constitute an
endorsement of products or services.

I think I found another AP doctor in Farmington Hills, MI. Dr Brownstein
248-851-1600.
He knew of the AP and even suggested Clindy IV's when I am more able for it
(have RA). But first he prescribed water. Hmmm. Actually, I drink very little
and guess I am severely dehydrated. He quoted the book 'Your bodies various
cries for water' about RA sometimes being helped with drinking more water.
Now if we could just patent little 'water' pills <g
Susan L

yes i wish to unsubscribe lisah@...

Hello Group - I read the e-mail about cherries and recalled
reading something similar awhile back about eating berries
when you have gout.
I went to the store last night and bough 2 pounds of
cherries (bing and Royal Ann - Rainier) and 2 pints of blue
berries. I don't do anything in a small way and yes, I want
a quick fix! Well, that was my dinner along with a chicken
Caesar salad.
Like I said, this is just an experiment, but today was one
of the best days I've had in a LONG LONG time!!! I was
almost pain free and very very flexible. I woke up in the
middle of the night and knew that I was without pain!!!
WOW! Has this been great or what!!! It was almost like
being normal! I wore high heels to work, to the grocery
store, to lunch, walked down stairs one foot after the
other, no shoulder pain, no hip pain, no knee pain. Only a
very slight discomfort in right shoulder upon rotation and
very slight heel pain in right heel.
Tonight after work I stopped at the store again and bought 3
pounds of cherries and 3 pints of blue berries. You can
guess the rest. Now we'll see if it was just one of those
"good" days or if this cherry/berry thing has any validity.
We all know how this disease can trick us sometimes - one
step forward, two steps back. Besides, what am I going to
do when cherry season is over???
I'll report back on Friday's test cherry/berry diet. (Talk
about Fad of the Week Club! Can I be President?)
Lea

Any ideas for sjogrens and fibromyalgia? I am in process of educating my
primary
doctor to see if I can start the antibiotic therapy. Thanks Cee

http://www.athensnewspapers.com/1997/111097/1110.a3rheu.html
An article on the AP.

Hi All,
Does anyone know if acidophillus can be frozen and still be effective. I
am getting ready to fly out to CA for a week for my second visit with Dr.
Franco( yea!) but will be on a plane for 6 hours ( yuck) and don't know how
I am going to keep the acidophillus cold. Thanks!
Leslie

Article on doxy in OA from the Annals of Internal Medicine
http://www.acponline.org/journals/annals/15jul97/osteoedt.htm

I read recently (in Prevention, I believe) that ginger is a good
anti-fungal. Can anyone comment? If it is, how much would be needed?
Linda

I'd just like to introduce myself. This might be a little long
(sorry).
My name is Rebecca Burley and I have ITP (low platelet count). I have
always felt that it was from an infection - urinary tract - that I have
had for 5 years. I had the UTI 2 years before being diagnosed with ITP.
I found the rheumatic web page thanks to someone who mentioned the
mycoplasma theory to me. This lady also has ITP and is being treated
for oxygen therapy.
I really wasn't worried about my ITP because my counts were in a safe
range. However, in February of 98, I came off of antibiotics for my
UTI. In March, I was hit hard with what appeared to be Lupus symptoms.
Extreme swelling, joint pain, puffy eyes, rash, sun sensitive, fatigue
(slept all the time). I knew what it was since I had already
researched and my hematologist had said that my ITP could develop into
Lupus.
Well, I went to my husband's GP (my GP didn't want to listen) and asked
for doxycycline. I began taking doxy 200 mg everyday. Most of my
fatigue was gone after a week. The majority of my joint pain was also
gone.
I still felt bad and after 6 months, I felt that the doxy was not doing
any good. I then added Cipro (I continued to take doxy). I improved
even more. I then changed from Cipro to Maxaquin after 3 more months
and discontinued the doxycycline. Maxaquin helped even more. I had
some lingering joint pain in my right wrist and in my feet and my neck.
I am currently on Biaxin (3 months now). My only lingering pain is
some tingling in my neck. No rash, no swelling, I am enjoying the sun
with my 2 daughters this year.
I am in a way fortunate because I do know the cause of my ITP and Lupus
symptoms - the UTI. I still have some pain in my lower back where it
is; and I know that I will not be 100% until it is gone.
Well, by surprise, last month I found out that I am pregnant. SCARED!.
I have chosen to continue my Biaxin (Pregnancy category C). I tried
the erythormycin, but it sent me back several steps. My gyn/ob will
not give me any antibiotic (I was in tears). I was never diagnosed
with Lupus; so no one really believes me. Of course, I'm glad that I
didn't wait for a diagnosis, but it's frustrating trying to convince a
doctor that you are not making it up and the symptoms were real.
I meet with my GP this week, I'm going to try Zithromax since it is a
pregnancy category B (safer than a C). Those of you on Zithromax...
Does the prescription only come in 5 day packets???
Thanks for listening. I'm glad I found you guys. I told you it would
be a long one... Please pray for my baby (due January 22nd).
Rebecca
Atlanta, GA

Some of you have expressed interest in prolotherapy. The antibiotics can
stop the disease process, but they can't reverse joint damage which has
already occurred.
Ethel travelled to Mexico to see Dr. Milne Ongley, who uses prolotherapy
(also called sclerotherapy) to help with joint damage and regain range of
motion. There are doctors worldwide offering prolotherapy.
Dr. Ongley has just created a web site which gives a great deal of
information about this treatment. You might like to have a look at:
www.drongley.com
Chris.

I wish to unsubscribe from the rheumatic @ onelist .com list.
This seems like a very difficult thing to do. This is the 3rd email I
have sent making this request.
Please, Please take me off the list. I do not have time to read or check
this email.
Thank you?!
Myrna

Zithromax (Pharmacists' Compendium)
Excerpts from the Compendium of Pharmaceuticals and Specialities, 1999,
Canadian Pharmacists Association, pages 2027-2030:
Zithromax
Azithromycin Dihydrate
Antibiotic
Pharmacology

I saw my doctor today, as I have "plateaued" on the tetracycline and been
flaring for awhile. He started me on 100mg doxycycline hyclate, once a day. I am
to go back up to 10mg of prednisone for awhile, as it was bringing the
inflammation down well during the burst until I went from 10 to 5 mg, where it
held the inflammation steady but was not bringing it down further. A couple of
joints are still quite enlarged. We will try tapering it down in a week or two
most likely, depending on how I respond to the 10mg dose.
As we were discussing the infectious theory and herxes, he brought up a
question to which I did not have a good answer, and I'm hoping someone here
does. He is not convinced of the infectious theory, but is giving me the
antibiotics for anti-inflammatory properties. One thing he questioned is if the
mechanism of action here is to stop reproduction of the mycoplasmas, not to
actually kill them, then where is this theoretical big die-off coming from that
is supposed to produce all the toxins responsible for the herxheimer response.
All I could respond to this at first was a big raise of the eyebrows, I had
never thought of this. I did point out that I got worse before getting better
with the tetracycline, but how is this explained if there is only a slow
attrition from population control? Anyone have any ideas on this? I'd like to be
able to answer this question next time I see him.
Also I was wondering if anyone has ever tried the doxy everyday like he
prescribed it for me, and if so, how did it go for you? Is the doxycycline
hyclate the form generally used? He just wrote "doxycycline" on the script, I
heard the pharmacists puzzling out which form to use when I was waiting to get
it filled. Say a prayer for me on it, I sure need to make some forward progress
and get out of this two-steps back phase! Liz G

Below is the letter I received from Great Smokey Lab when I inquired
(make that tried to order) about the comprehensive stool analysis. The
cost is not nearly as high as people remember it from a few years ago.
Only $170 prepaid.
HTH - Jan K

Go to www.onelist.com and login. Then select 'rheumatic' and you'll see a
link to 'shared files' where you can upload.
Chris.
Pardon my ignorance, but... how?

From Linda Mazumdar <lcmedit@...
Dear Chris,
You may remember that I "temporarily" unsubscribed because of a
huge workload that was supposed to be finished by June or July. Well, now
it looks as though it's going to last through September at least.
However, I didn't want you or the group to forget about me yet.
I miss everything, especially the daily encouragement and support. I seem
to be getting better a little at a time, but I want to return to the group
as soon as possible. Please tell them all HELLO for me! Thanks.
Linda Mazumdar

Hey folks - I just wanted to step in and say thanks to everyone who sent me
suggestions on what to do for my shoulders - I was overwhelmed by the response
and greatly appreciate your concern. You guys are really, really fine folks!
I am off to Atlanta for 4 days to go to a friend's wedding - should be
interesting to see how I make out. Started Celebrex today (BCBS approved it -
amazing). Holding off on the Zithro till I get back - don't think I want to
risk a major herx down there.
So hold down the fort and if you find the cure, make sure to sneak a note into
my mailbox! :))
Thanks again,
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day; Celebrex 200mg 2x/day;Zone
Diet;Olive Leaf;Slippery Elm
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html
ICQ 18123139

Dear Group,
I have Scleroderma and have started the Ap therapy 2/99 after reading
about it. From what I have been reading from this group I would like to start
taking Olive Leaf Extract and Slippery Elm. Could yous please give me some
information about the best brands to get( and from where) and how much I
should take.
Thanks in advance,
Annie

Hello everyone,
Well, we had a small tornado around my place. Trees have fallen all over the
place, quite a bit of damage all over the place. I am lucky, I had no damage
but a few broken branches. Unfortunately, I had a hard time collecting mail
or even getting on the net. Felt pretty lonely that way.
Now, the nurses here are still on strike and I missed four IV treatments,
which literally doesn't feel too good. I am on some prednisone still since
my lungs aren't great. i am just hoping I can stay out of trouble. Sure
wouldn't want to land in the hospital now.
Hope everyone is having a good summer,
hugs, Kathryn

My GI doc gave me tetracycline since I have been having weekly "irritable
bowels symtoms" mostly from my lower GI track. He told me to take it 3 times
a day for 3 weeks. Will I have a major herx from this? He told me not to stop
the meds....I am getting worried.
Linda
SD 15 years, AP 2 year.

I have just been dianosed as having "costochrondritis" (After being told I had
pleurisy, asthma, whooping cough etc etc)
I would be greatful for any information that people maybe able to share on this
condition. I have only just started to check out this website - so a push in
the right direction would be much appreciated.
Lisa lisah@...

AP
13-JUL-99
WASHINGTON (AP) -- Drug companies are lobbying hard against Medicare
coverage for prescriptions, warning that research on new drugs for the
elderly will depend on strong profits.
"Profits attract investment, investment pays for research and research leads
to the new cures and treatments that will help and heal patients," said Alan
Holmer, president of the Pharmaceutical Research and Manufacturers of
America.
"The concern is if you have government price controls, you would ratchet
down revenues to the companies and that in turn could have adverse impact on
investment," he said.
The drug makers' association has run newspaper ads in recent weeks aimed at
raising public concern as lawmakers consider a White House proposal to offer
new prescription coverage to all 39 million elderly and disabled Medicare
beneficiaries.
Lawmakers who support adding a new drug benefit to Medicare call the
warnings scare tactics.
"What you have here is an extremely greedy and profitable industry that is
ripping off the American people big time and uses their profits to put
extraordinary pressure on Congress through campaign contributions to both
parties not to move forward to protect American consumers," said Rep. Bernie
Sanders, I-Vt.
Drug companies' political action committees made more than $4 million on
campaign contributions leading up to the 1998 congressional elections,
according to the Center for Responsive Politics. In addition, several
individual companies made large "soft-money" contributions, which are
unrestricted and are supposed to be used for party-building activities.
Among them were Pfizer Inc., $747,050; Bristol-Myers Squibb, $559,975; and
Novartis, $495,604.
The pharmaceutical industry reinvests about 20 percent of its revenue in
research and development, and that's expected to total about $24 billion
this year, higher than the National Institutes of Health budget.
Nevertheless, senior citizens and others who must buy drugs on their own are
paying about twice as much as people enrolled in large health plans that
negotiate bulk discounts, according to a study conducted by Democratic staff
of the House Government Reform Committee.
Clinton administration officials estimate that if Medicare were to use its
own bulk purchasing power to negotiate discounts through the same private
benefit managers that many health plans use, retirees could save 10 percent
to 15 percent on prescriptions.
"This is simply ... allowing Medicare to get the same discounts for their
beneficiaries that every other insurance provider can currently get for
their beneficiaries," said White House economic adviser Gene Sperling.
Analysts who watch pharmaceutical companies, however, are warning investors
to pay close attention.
"The Medicare prescription drug benefit issue could have an adverse impact"
on the drug industry, said a June 24 report by Christina Heuer of Salomon
Smith Barney in New York.
Pharmaceutical companies are working on 191 new medicines to tackle diseases
associated with aging such as arthritis, osteoporosis and Alzheimer's,
according to a survey by the drugmakers' association.
Such new treatments can be too expensive for many elderly and disabled
Americans who have no prescription benefits under Medicare, drug makers
concede. But they say their prices must take into account the time and money
it takes to develop and test a new medicine.
For example, the new bioengineered drug Enbrel, introduced last year to
treat rheumatoid arthritis, took the small Seattle-based company Immunex
Corp. more than a decade and $300 million to develop.
Enbrel costs around $1,000 a month. That price is prohibitive for many who
could benefit from the treatment -- as company officials know from phone
calls and letters received from doctors and Medicare beneficiaries.
"For Medicare not to cover that doesn't seem to make a lot of sense," said
Peggy Phillips, senior vice president at Immunex. "We are very interested in
some kind of Medicare reform."
But Immunex officials also point out that after 18 years in business, the
company has only this year turned its first quarterly profit: $245,000.
Pharmaceutical industry leaders say they could support alternatives to
President Clinton's plan that would rely more on the private sector to bring
drug coverage to retirees.
One such plan, supported by most members of an advisory commission that
reported to Congress this year and praised by Republican leaders, would have
Medicare contribute a limited amount toward the cost of private health
insurance -- including drug coverage -- for retirees instead of paying their
individual medical bills.
Copyright 1999& The Associated Press. All rights reserved. This material may
not be published, broadcast, rewritten, or redistributed.

I don't know what's going on. My R buttock is so bad I can hardly sit at
all. Pain goes all the way down to my knee like a sciatica. I was thinking
this was pain referred from my hip, which is in a flare, but Dr. Sarah (lol)
said it could be my spine. I have no pain in my spine whatsoever. There is
no pain laying down. Both my hips are acting up since about April.
Do I need an Xray? Has anyone else had this?
Anita
RA 26 years, Fibro, AP 17 months

Hi Folks,
Well darned if I know what I'm doing. What I took yesterday morning that
kicked the herx was pseudoephidrine, not chlorpheniramine. What I
specifically took was "Advil Cold and Sinus" which has 30 mg of
pseudoephidrine added to the 200 mg of ibuprofin. I took two. Since I
normally take ibuprofin anyway, I'm putting the improvement down to the
pseudoephidrine. Beware folks with high blood pressure. I don't think
you guys are allowed to have this drug.
Sorry for the confusion,
Jan K

Pierre:
Thanks so much for the mail about AS. I know it took a lot of time not only
to write, but to accumulate the knowledge that you shared with me.
I guess I have technically had AS for over ten years, looking back on the
symptoms, but was only recently diagnosed. I suffer from some stiffness in
my upper spine, and a little in my neck, but everything else is OK for now.
I am still able to play golf (I shot a 78 Sunday), and attribute my frequent
golf play to delaying the progression of the disease.
Aside from the many drugs you mentioned in your mail (which I am not familiar
with), my research has led me to the same conclusion about the bacterial
cause of the disease. Although I have never heard the ulcer theory, it makes
sense. I have read that bowel permeability is how the bacteria gets from
your gut to other parts of your body. Some of this bacteria normally lives
in a person's gut, and is harmless to someone with a seamless intestine or
different genetic markers.
I sought and found a doctor in Houston who deals in this area (a D. O. ).
She has many patients with RA and has success with antibiotics and other
"alternate medicine". First we are conducting three tests. Allergies (blood
sample), gut permeability (urine sample after drinking some weird fluid) and
stool analysis (yuck almighty) to try and identify the bacteria that is
"overgrown" or otherwise causing my problem. The classic bacteria for AS as
you mentioned is Klebsiella, and we expect that to be the case with my AS.
There are other suspected bacteria as you know, and they may as well cause AS
in susceptible people like me. Based on the results of these tests, she will
prescribe medication and diet, which I suppose will include an antibiotic
regimen. She said Klebsiella is a common cause of urinary tract infections
and is easy to kill in those cases. How Klebsiella or some other bacteria
causes AS is not as simple as a urinary infection, so I suspect the treatment
for AS will be more complicated and long-term as well.
An interesting part of this disease is how it affects native Americans.
Apparently Indians with the genetic marker (HLB-27 or something) were not
susceptible to the small pox brought over by the European settlers, mainly
because they had this marker. As a result, the majority of the 5% or so who
survived the small pox (it killed 95% or so) carried this marker. This is
the same marker that allows AS to happen. So AS is the most prevalent in
Indians. But still, not all of them get AS. So there is some other factor
(gut permeability, bacteria overgrowth, etc.) that must be present for AS. I
am part native American (1/32). I have been tested for the marker, and I
have it. And I have AS.
Research is scarce for AS because there is no money in a cure. Not enough
people have AS to create a profitable market. Adam Smith's invisible hand
directs resources to more lucrative diseases. So we must fend for ourselves.
I am prepared to do that. I have been doing it all my life. In that
regard, I am so thankful for the Internet. Without it we would not stand a
chance. Apparently, just out of curiosity, some very smart people have set
aside monetary gain to look into the causes and possible solutions to this
disease. I fell very lucky to have the resources to access this information.
I just hope their "theories" resemble reality, and we can do something to
turn away this curse laid on us by the hand of fate.
I got carried away a bit here. I guess I should say thanks for listening. I
don't personally know anyone who can sympathize with me on this. Again, the
Internet provides. This time with a sympathetic ear, albeit a ear I will
never see. But as Robinson Crusoe learned on that deserted island, no matter
how bad you have it, someone out there has it worse, so we should be thankful
for what has been provided by our Maker, instead of grieving over our
shortcomings (I will be asking for an explanation from my Maker, however,
when I meet Him).
I better stop now. I will keep you posted on my progress. If you care to, I
would like to hear more about your AS, and what I may expect. The unknown is
the scariest, and right now I am pretty scared.
Thanks so much again. Hope to hear back from you.
Bill E.

I just don't want more e-mail coming in. I can't handle the load. I
don't mind searching for things myself and going to the communities.
I have a big question though. Have these people with all these problems
tried REALLY GOOD vitamins, probotics (friendly bacteria) and herbal
remedies instead of all the medications that give them more problems??.
They may want to read the side effect labels and try some
alternatives, maybe even homeopathic or herbal. A doctor will give you
medication to cover up your problem instead of tying to find out what is
causing it. Otherwise if everyone was well the dr. wouldn't have
patients or a job. *s*

Please CANCEL my subscription to rheumatic. I received 56 messages just
in one afternoon. I don't have time to keep up with all the mail I am
receiving. When I have the time to set at the computer more I will
re-subscribe..
Thanks, Metexastoo

Hi guys -
I just wanted to tell you my experience with anti-histamines today. I
started the colloidal silver last week and went into a major herx on
Saturday. I was feeling like death warmed over when I got up this
morning. Every joint hacked off and really stiff, sore, and shuffling
along here. I took 8 mg of chlorpheneramine and within the hour felt
really pretty darn good again. Back to where I was before I started the
herx. So maybe there really is something to all this pain being an
allergic response to the bug's toxins. Anyhoo, just thought I'd let you
know it worked for me this one time anyway, and I was feeling really,
really rotten. Not just sore, but all that sick, yucky feeling added to
it when you're herxing.
Best - Jan K

Hi group -
Today has just become a very good day! Just got the results of latest blood
tests:
RF - 799.........this is down from 895 three months ago.
C reactive - 9.29......this down from 11.58 three months ago.
For some reason, the lab did not do a SED rate...oh well.
I really feel that my RF has peaked and can only go down from here - and that
makes me feel VERY VERY GOOD!
Smiling from ear to ear.......Joey

I have Psoriatic Arthritis (which seems to be a catch-all for RF negative
arth) - and wonder whether CIPRO or CLINDY is better for me (IV)? I have SI
joint involvement and think that maybe it is AS.
Any thoughts? If cipro is better for AS, can I use it as a substitute for
Clindy even if I don't have AS?
Thanks,
Mike

hello group, i was a member over a year ago but then entered law school
and the quantity of mail was more than i could keep up with. but now
it's summer and i just had a few questions so joined back....
i just started enbrel and wondered if it works OK with the AP?
i'll need a new hip they say (and i'm just 36) if i can replace the
damage done (that is there is no cartilage) unless i can find some of
these supplements that claim to replace it. anyone found any of these
that have actually worked as i'd love to give something proven a try
before i go to surgery.
thanks in advance, Margie
p.s. if anyone is seeing Dr. Kempf in DC and has any comments on him
i'd love to hear from you privately. thanks

Ooooops! My shoulder was manipulated by an orthopedic SURGEON
not orthopedic shoulder!!!! Duhhhhhh! Judy (deejay)

Hi Mark, I went through a bad shoulder experience and ended up with frozen
shoulders that had to be "manipulated" under anesthesia by an orthopedic
shoulder. Actually they knock you out and while you're under he just sort
of jerks your shoulder around breaking up all the adhesions.
The right one was frozen up in May of 1996 and the left one in May 1997.
I'm glad they both weren't at the same time! The exercises the physical
terriorist (therapist) showed me were. (1) stand and hold arms down at
sides. Begin twirling hands drawing small circles and gradually making the
circle size get bigger and bigger...reaching out as far as you can
(like a windmill). (2) stand near the wall or in a doorway. Put your
fingers on the wall and "let them do the walking." Crawl your fingers up
the wall
higher and higher stretching out as much as you can. (3) get a stick,
broom handle, yard stick, golf club.....or similar item about 3 to 4 feet
long. Lie back on the bed with the stick across your tummy. Grab hold of
the stick with one hand near each end. Begin bringing the stick up over
your head aiming for the space on the bed behind your head.
You're trying to take the stick all the way over your head so it lands on
the bed. Do this about 10 times trying to make the stick go farther each
time. Do this several times a day.
Let pain be your guide. If you experience increased pain you are doing too
much and need to back off. I was using heat on my shoulders, but she told
me heat can actually increase inflammation and I should have used ice.
Hope this is helpful to you. Judy (deejay) Scleroderma 10+ years, AP 21/2
years - doing great....(shoulder problems were BEFORE starting AP)

Dear Group:
*************************************************
When this article was sent to me recently, I was alarmed at
the costs. I challenge a response as to whether these look like inflated
prices. I am assuming that the article lists the cost of prescriptions for
one person for one year. While these drugs are not in the antibiotic group,
some members may have had them prescribed by their doctors. It is the costs
that I am curious about.
I don't have the article in full or the date of publication. I believe all
of these drugs are available by prescription at this time.
*****Quote************
This article was pulled from the
Medford, Oregon, Daily Tribune.
****************************************************
NEW DRUGS OFFER HOPE
The following is a list of some of the new drugs for rheumatoid and other
forms of arthritis or inflammation, expected to be approved within the next
year by the Food and Drug Administration:
Embrel, manufactured by Immunex. Blocks the chemical message that tells
other cells to react and cause inflammation. Estimated cost $8,000 to
$10,000 a year.
Celebra, manufactured by Searle. Known as a COX2 selective drug. It's a
chemical that blocks the body's inflammatory response, without causing
internal bleeding like ulcers. Works on all inflammation like Advil and
Motrin. Cost about $672 a year.
Remikade, manufactured by Centocor. Already approved for Crohn's disease
and acts like Embrel. Cost $10,200 a year.
Arava, manufactured by Hoechst Marion Roussel. Approved by FDA Sept. 11
for rheumatoid arthritis. Changes how the body responds to inflammation.
Promises to slow the erosion of joints. Cost $2,688 a year.
*****end of quote*************************************
Thanks for an anticipated response.
Helen
RA (5 1/2 yrs), one year on Minocin 50 mg MWF (herx on higher doses).
Hypertension and edema keep me off NSAID. Sulfasalazine works somewhat.
Took Prednisone in reducing doses for first diagnosis of Polymyalgia
Rheumatica. Off it for 2 1/2 years. Pain and stiffness troublesome in
knees/hands/wrists/shoulders/upper arms; more pronounced at night/weather
changes. Worse in past year or maybe I am just tired of it all.
Hypertension, low potassium and dizziness being investigated.
RA not controlled. HL

<<You know I'm beginning to wonder just a tad what happened to good ol'
minocyline? I know I've been guilty of wondering off down the path of
chasing every latest fad (most to no avail), but as we continue to explore
all these alternatives, it makes me think that minocycline isn't very
effective or why would we be trying everything else under the sun? I know,
we're just trying all this other stuff so that it will give the minocycline
a better chance to work and be effective. Still, I don't really recall Dr.
Brown indicating that we had to do all this. Seems like he had success
without it.
Hi Mark:
About a year ago a group of us were wondering why we were NOT getting the
results that we expected after reading THE ROAD BACK and using the antibiotic
protocol. Someone astutely pointed out that Dr. Brown used antibiotics
intravenously in almost all cases. Virtually none of us are doing this nor
can we find doctors willing to RX the IV's. Maybe this is why we are
wandering around looking for the rest of the answer. Better health, Al

Group
This may seem a stupid question coming from me. But what is the correct
definition of a FLARE?
I've had RA for a year and a half now and have belonged to this group for a year
and been on AP since 10/98, but now I seem confused by what constitutes a FLARE.
Mark and I have had discussions about this, and each of us have a different
thought of what a FLARE is, and we have both had RA, group and AP about the same
time.
So please all of you with far more time and experience into these horrible
immune system diseases, share "WHAT IS A FLARE"?
How do we know when we have one and how do we know when it is over? Thanks so
much.
Hugs, Jai

I just found out that I am pregnant. I've been on antibiotics for
Lupus symptoms since March of 98. I know that Mino and Doxy are a
no-no while pregnant. Are there any patients who have continued to
take some kind of antibiotic while pregnant?
Very scared,
Rebecca

I have to say that I have ever hardly been out of a flare. My RA came and
steadily got worse. I have never responded to "conventional" meds or the AP
yet. My sed rate has been up around 80 for years and right now my RF is
about 670. I find that all I can do to get by is to rest. I get so weak and
tired, (also have been anemic for quite some time) and so run down that on
some days it is an effort to walk across the room without resting. The
doctors say it goes with the RA, anemia and long term disease.
I have had to learn to let things go and believe me that wasnt easy as I
was always a perfectionist with my house. One thing thrown around and I'd
have something to say about it. (Probably needed an attitude adjustment in
that dept and this is God's way of letting me get one. LOL )
I've learned though that if I dont rest and just push myself through, I will
pay by being extrememly exhausted for a few days with more stiffness. I had
to get in the habit of making myself lay down and rest at least one time
during the day. I work part time too, so its been harder since I started to
do that.
I"m good to go for a few hours (gently) after all morning meds and then
of course the predisone before bed at night. I wouldnt be walking or getting
up at all right now if it wasnt for that. (I've fallen asleep twice without
taking it the last few years, and I have paid dearly) But in the afternoon,
I absolutley have to lay down and rest for an hour and sometimes even more.
There are some days when all I can do is walk in a flop down. But the key is
making myself flop down even on the good days. And also not fretting about
things not getting done. Thats the hardest part.
I'm depressed alot when the flares are bad. Like the last couple of weeks
since starting the Zithromax, I've been flared generally over all joints and
somedays really badly in my foot or knee or wrist where it is just
concentrated in one joint for a few days. Then I do the ice and moist heat
thing, alternating them every 20 minutes or so for at least an hour or two.
I am bound and determined not to back down on these meds though and try
to just get through this really bad time. I believe in the AP and I have to
respond to it someday!!!
So Rest and do what your body tells you to do when you can. I cant stay
in bed for days or I get stiffer too it seems. Just get plenty of rest if
possible. And of course looooooooooots of water, right gang??:)))
HUGS:)
Carol**

ALL,
I am in the begining stages of reading the Arthritis Bible: New Book-
Has a good section on AP
Anyway one of the things they suggest is a fast-
I have never done this before- Any recommendations on how to go about
it- What liquid drinks to have-..etc how long?
Thanks,
--
Scott Matzelle
Private Client Services
Morgan Stanley & Co.
matzelle@...
312-706-4512

hi everyone,
i am currently on minocin m-w-f @ 200mg. i am slowly adding clindimycin on
tuesday. has anyone else used clindy in combination? if so at what dosage?
i am currently at 450mg and wanting to go to 900mg on tuesday. does this
sound about right?
appreciate any help.
thanks,
dave ra-10 yrs....ap-15 mo

I heard something pretty disgusting on TV the other day. Research teams
from other countries have been to Africa to use African AIDS sufferers as
subjects in their trials. One promising treatment was a patch containing
antibiotics, using DMSO in the patch to send the antibiotic through the
skin.
So having helped by participating in the trials, the people were told that
the patches wouldn't be available in their country as they'd be too
expensive to market in Africa.
Chris.
"Billie Garmon" <bsgttx@...
To: jkirsten@..., "AP List" <rheumatic@onelist.com
cc: (bcc: Christine Adlard/AUST/CSC)
Subject: Re: [rheumatic] What Is Colloidal Silver
A year ago I heard a radio program one day about this, and I was all
excited. It literally sounded too good to be true. They even said that
Mandella had bought it by the gallons to treat his people with AIDS. Last
night on the news I heard about the devastation of the people in Africa
from AIDS. Since I first heard ago colloidal minerals I've heard cautions
about using it. I really don't know enough one way or the other to comment
further, but I wanted to sound a note of caution. Billie

Bio-chemistry report
Reference values
S-Urate
0.28 nmol/1
0.15 0.41
S-cholesterol
6.3 nmol/1
<5.4
S-LDL cholesterol
3.75 nmol/1
3.4 5.2
S-HDL
1.16 nmol/1
S-triglyceride
3.01 nmol/1
0.28 2.3
Tot.chol. / HDL chol ratio
5.4
<5
S-apolipoprotein
169 U/L
Up to 300
C-reactive protein (CRP)
negative
P-glucose (fasting)
5.3 nmol/1
3.3 6.1
Seriology report
Anti-streptolysin"0"
negative
Rheumatoid factor (latex)
negative
Anti-nuclear factor (ANF)
negative
Brucella elisa IgG
negative
Brucella elisa IgM
negative
Haematology report
Reference values
B-ESR (Westergren)
20 nm/hr
Up to 40
Erythrocite count
4.7 / pl
4 - 6.5
Haemoglobin
14.3 g/dl
14.1 - 18.5
Haematocrit
43%
41 - 56
MCV
92 fl
79 - 101
MCH
31pg
26 - 34
MCHC
33 g/dl
32 - 36
Patelete count
308 / nl
150 - 400
Leucocyte count
8.9 / nl
3.9 11.5
Neutrophils
66.3%= 5.9/nl
3.9 11.5
Lymphocytes
22.8%=2.03/nl
1.00 4.00
Monocytes
6.9%=0.61/nl
0.20-0.80
Eosinophils
3.5%=0.31/nl
Up to 0.45
Basophils
0.5%=0.04/nl
Up to 0.10
Red cell indices
adequate
Leucocyte counts (RDW)
12.3%
11.5 15.5
Microbiology report
Chemistry
Glucose
Not detected
Protein
Not detected
Ketones
Not detected
Occult blood
Not detected
Specific gravity
1.005
pH
8.00
Microscopy
Leucocytes
Absent
Eruthrocytes
Absent
Casts
Not detected
Culture
Antimicrobal substances - Absent
RIA Laboratroy report
Prostrate specific antigen
2.0 ng/ml
Up to 4.0
BIO-chemistry report
S-Sodium
141 nmol/1
135 - 150
S-potassium
4.3nmol/1
3.6 - 5.7
S-chloride
101 nmol/1
99 - 110
S-total CO2 (Bicarbonate)
30 nmol/1
20 - 30
S-urea
5.0 nmol/1
2.5 - 6.6
S-creatinine
110 umol/1
62 124
S-bilirubin total
19 umol/1
2 - 26
S-bilirubin conjugated
5 umol/1
Up to 7
S-phosphatase alkaline
107 IU/l
35 - 130
S-g-glutamyl transferase
34 IU/l
13 - 86
S-ALT (GPT)
14 IU/l
Up to 50
S-AST (GOT)
12 IU/l (37C)
Up to 45
S-LD (LDH) P-L
318 IU/l
109 - 450
S-total protein
74 g/l
60 - 80
S/Albumin
44 g/l
35 - 50

Hi all,
I just spent a week in hospital (the crohn's flared up and I wound up with
a bowel obstruction). Anyway, I got a weeks worth of Cipro and Flagyl by
IV while I was on bowel rest. Wow what a difference. My back never felt
better. I'm back to the pills, but the little booster really seems to have
helped. I'll have to think of an easier way to get it next time though.
It does seem like my GI is coming around though. He seems to think the
antibiotics could help both the crohn's and the AS. It's a start. He
stills want's to do a colonoscopy though. Ouch.
Shaun
Shaun A. Firth
"There is no one right way to live."

In a message dated 7/11/99 9:40:57 PM Eastern Daylight Time,
spitmk8@... writes:
<< Have a question for you old timers. Three weeks ago I took one weeks
worth of pregnisone for dental swelling. It wasn't until I was on the stuff
that I realised the pain from the arthritis was gone. Now, three weeks have
passed and although there is some arthritic discomfort, I can walk again
without grimacing and my hands are doing much better. The pessimist that I
am, I was just wondering how long the effects of the one weeks worth of
steroids will last over the arthritis.
Catherine
Hi Catherine,
Well I guess that depends how much you were on and how long it would take for
a wash out from your body. Were you injected or was it oral? I have never
had luck for it lasting more than 1 day if it was oral. If you were on large
doses maybe it would last awhile, I dunno. Sorry
Anita

Hello:
I have a question that you may have already answered , and if so I'm sorry
but I missed it.
I have been going through menopaus (hot flashes, irritability, and all the
rest) for about 5 weeks. And for the last 3 or 4 weeks I've been
experienceing tremendous flaring. Is it a coincidence, or are they
related.?
Sandy

What sort of gentle range of motion exercises do you do for bad shoulders? I
can shrug them, and move my arms back and forth some, but raising them above
shoulder level brings on excruciating pain (real joy to try and comb my hair and
shampoo). Trying to reach behind my back, turns them into liquid fire. I can
still get them up there above my head, but I have to go through some contortions
to do so and lowering them is no fun once I've got them up there. I suspect I
shouldn't be putting them up there at all, but it is nice to wash my hair and
comb it before greeting guests at our B&B. :))
Thoughts?
Thanks - you guys have all been so helpful and supportive! It's been reassuring
although depressing to see that I am not alone in this pain thing .
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day;Zone Diet;Olive
Leaf
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html
ICQ 18123139

Hi.
I am on 100 M 150 W and 100 F for about four weeks. I feel okay except for
painful wrists and some swollen, sore fingers. Fatigue not bad at all.
My sed went up, but Rheumatoid Factor went down. C-Reactive was normal.
Should I increase to 150 150 100 or stay the same. How does one know when to
increase. My goal is 200MWF.
Thanks in advance for your advice.
Susan

Hi.
I just bought a new computer as mine is ancient history, and I picked out an
ergonomic keyboard which is split in half so wrists are in a healthy positon.
It feels great and really decreases discomfort. I have info if any of you
want it.
Susan

Hi. It's kind of like a good news, bad news joke. I got another trigger
finger (bad news), but before I was on the Ap when I got one I couldn't bend
it at all. Now, it's really painful, but when I massage the base of the
finger, it unbends and functions. Never did before; think it must be the
minocin(good news!)
Do any of you get them? What do you do? I always used to get cortisone
shots. Hope I don't need one now and this "massage cure : cure works..

Hi everyone.
Today I tried a class called "gentle and healing yoga". It was my first yoga
class in years, and of course, I couldn't do alot cause of painful wrist
joints etc, but what I could do was great and I felt better after than I had
in ages. I guess it's the stretching. It's sure a fun way to do range of
motion, especially if you're careful. And the meditative aspect is really
healing too.
Thought I'd share with you as you might have the opportunity to try it with a
video or a book or class etc.
Susan

Have a question for you old timers. Three weeks ago I took one weeks worth of
pregnisone for dental swelling. It wasn't until I was on the stuff that I
realised the pain from the arthritis was gone. Now, three weeks have passed and
although there is some arthritic discomfort, I can walk again without grimacing
and my hands are doing much better. The pessimist that I am, I was just
wondering how long the effects of the one weeks worth of steroids will last over
the arthritis.
Catherine

CROHN'S DISEASE ASSOCIATED WITH SERUM ANTIBODIES TO M. PARATUBERCULOSIS
Patients with Crohn's disease produce serum antibodies against
Mycobacterium paratuberculosis.
http://id.medscape.com/5298.rhtml
<a href="http://id.medscape.com/5298.rhtml"

STOOL-BASED TEST SIMPLE, ACCURATE FOR H. PYLORI DETECTION
A new noninvasive assay for detection of Helicobacter pylori infection
could simplify screening and improve the management of patients who undergo
eradication therapy.
http://id.medscape.com/5296.rhtml
<a href="http://id.medscape.com/5296.rhtml"

Here's an interesting article on the new online drugstores.
http://cgi.pathfinder.com/fortune/technology/1999/07/19/onl.html
Mark

Patients Rights and the Uninsured:
http://www.cnn.com/ALLPOLITICS/stories/1999/07/06/uninsured.ap/index.html
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day;Zone Diet;Olive
Leaf
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html
ICQ 18123139

Hi Folks,
Not long back there was discussion of Saw Palmetto and some of the guys
here talked a good bit about how effective they've found it. Could you
good people email me privately about your experiences, what brands
you've found most effective and at what dosages. My Dad is interested in
trying it, but I told him not to buy any until I got your feedback to be
sure he gets the right thing. If you want to address the letters to him,
his name is Ike Hays, and I'll be forwarding your messages on to him.
Thanks a bundle.
Jan K

Hi ladies,
About three months ago I started having some pretty fierce night sweats
and about a month ago started taking a product I purchased at
Walgreene's....Soy Care. This has done wonders and I quit having the
"sweats" after only two weeks of taking it. I was waking up drenched three
or four times a night and wasn't able to sleep soundly. Now I am sleeping
through the night ( with covers on!!!)Been on it now a month and I am
totally pleased.
( and rested!)
Leslie

Hi:
If I want to tell my doctor that I want the IV's , exactly what should I
tell her? I have never had them before and I'm thinking they may help me.
Being on the AP for about 4 years and I'm lots better, but still have lots
of problems.
I appreciate your help.
Sandy
ps. My doctor is a naturalpathic doctor that only knows what I've told her
about the antibiotic therapy. And so far, she's gone along with me and
encouraged me.

This may be old news for some of you, but perhaps not. While standing in
Walmart the other day, I happened to pick up a brochure for their Spring Valley
herbs. Reading it, I noticed the following explanation for the process of
"Standardized Herbs". So you might want to check that you are taking a
"standardized" form of the herb, vs a non-standardized. Not that this is proof
a lab turns out a good product, but it is a place to start at least.
"Modern technology enables us to concentrate and standardize botanicals by
removing the plant cell's celllulose barrier and then measuring and adjusting
the active ingredients remaining in the herb to prescribed standards.
Standardized herbal extracts are more easily assimilated into your bloodstream
because the cellulose has been removed. By standardizing the active ingredients,
critical potency levels can be obtained, measured and guaranteed. This provides
you with more of the herb' natural benefits. And because standardized extracts
are more easily assimilated by the body, you receive all the benfefits at a
reduced dosage. But don't confuse standardized xtreacts with non-standardized
extracts. While both types of extracts typically condense 2 to 200 pounds of
herb into 1 pound of finished concentrated extract, often referred to as a ratio
such as 50 to 1 or 50:1, true concentrated standardized extracts go further by
measuring the active ingredients in the herb extract to guarantee those active
constituents are present at prescribed levels, thus providing all the health
benefits in precise amounts. All of Spring Valley's extracts are true
standardized extracts, with both the concentrated ratio and the guaranteed
active ingredient quantities stated on each label."
Mark
http://members.tripod.com/~Mark_Holmes
http://www.bbonline.com/va/foxhill (Work)
Member of the World Photo Gallery at http://www.WorldPhotoGallery.com

Hi Group:
Hi Group:
Came across this current article at: www.healthscout.com at their arthritis
link
Who knows, it might help some of us.
Harry
By Valerie Andrews
HealthScout Reporter
TUESDAY, Feb. 9 (HealthScout) -- If you think life is a bowl of cherries,
well, it just might be if you have arthritis. Eating just 20 a day can reduce
inflammatory pain, researchers at Michigan State University say.
Cherries also contain powerful antioxidants, says Muraleedharan Nair, a
professor of horticulture at the school in East Lansing, and may be some
protection against heart disease.
The government, however, is waiting for harder results. "So far, there has
been no petition filed on the medical use of cherries for pain relief," says
Emil Corwin, a spokesperson for the Food and Drug Administration in
Washington, D.C. "Since this is a medical claim, we will need to wait for
more research."
While this research was done on tart (sour cherries), you may get the same
benefits from the more palatable sweet ones, Nair says. "We just don't know
how many of those you have to eat to get the same results."
This report appears in the February issue of the Journal of Natural Products,
published by the American Chemical Society.
Northern Michigan produces about 300 million pounds of tart cherries a year,
and the growers report less arthritic pain, fewer heart attacks and fewer
health problems overall, says Nair. "But this is only anecdotal, so we
decided to look at cherries in the lab."
In chemical tests, Nair and his colleagues found that cherries can be just as
useful for pain as aspirin, ibuprofen, and other anti-inflammatory drugs.
The human body makes prostaglandins to lessen the pain of inflammation, and
cox-1 and cox-2 enzymes trigger their production. Cherries are high in these
triggering enzymes, Nair says.
This fruit also contains anthocyanins, which serve as antioxidants and
control the production of free radicals, which are linked to heart disease.
The anthocyanins, says Nair, are the same substance that gives cherries their
appealing color.
According to MSU researchers, the antioxidants in cherries are more powerful
than vitamins E or C. Just one serving -- or 20 cherries -- will provide 12
to 25 milligrams of active antioxidant compounds. And the Michigan team is
now designing a food supplement that will supply a daily dose.
"A growing body of evidence indicates that cardiovascular disease, arthritis,
various cancers, and Alzheimer's disease are associated, at least in part,
with the damaging effects of uncontrolled free-radical production," they say.
What To Do
"This study hasn't been conducted on humans, so don't throw your medicine
away or ignore your doctor's advice," says Liz Ward, a registered dietitian
and spokesperson for The American Dietetic Association. "Still, this study is
intriguing. There's a wide array of benefits that comes from eating fruits
and vegetables, and we are just beginning to document them. In the meantime,
we recommend at least five servings of these foods a day."
Be careful, though, many people don't tolerate cherries well, and eating them
can lead to skin breakouts and other reactions.
If you want to add cherries to your diet, start with 20 fresh cherries or
drink a glass of cherry juice each day, Nair says. "Dried cherries can be a
nice alternative, though you'll have to eat about three or four times more of
them."
What about cherry pie? Bad news there. Some of the benefits are lost with the
cooking, Nair adds.
For information on the treatment of gout and arthritis, contact The Arthritis
Foundation.
Go to The American Academy for Nutritional Research for data on the benefits
of antioxidants.

Hi Folks,
I just wanted to relate my experience to you playing with my anti-biotic
dosage, because it seems to be very different for those of us with AS
versus RA et. al. When I first went on my antibiotic (originally Doxy)
it was 100 mg bid, 7 days a week. Then I found this group and read about
the theoretical superiority of Mino to Doxy and about the MWF regime. So
I switched to Mino and to save some megabucks, also went to the MWF
dosing. I have been slowly deteriorating ever since. So, I figured my
particular body needs more. I bumped it to M-F, taking weekends off,
with little effect except to continue to worsen. Two weeks ago I decided
that despite the idea that my body should have some time off from the
Mino, it was time to try the 7 days a week again.
Now, lo and behold, I am going through the same miracle of remission of
symptoms that I did when I first went on the AP. All swelling gone.
Right heel has quit hurting altogether and then left one is getting
there (they've been monsters for months now). Full flexibility in my
back when I get up, so I'm no long shuffling along half stooped and
unable to even go to the toilet hygenically, which as you know leads to
vaginal infections. Basically waking up ready to go dancing in the
streets again! Just like when I was on the 7 days a week when I first
started.
With all the talk on Klebsiella pneumoniae as the ultimate source for
AS, versus the mycoplasmas of so many of the other diseases, I am
relatively certain from my microbiological training that this has to do
with the life cycle of the different species. I expect that K pneumoniae
is as prolific as other species I've worked with. E coli for example
doubles in about 20 minutes when in the exponential growth stage. That
would mean a MWF regime would be all but useless for AS. Even at the 5
day a week dosage, I'm giving them two whole days to do another buildup
and am probably starting from scratch on the kill-off each week. At 7
days a week the buggers don't have a chance unless they happen to be
resistant. This resistance factor is why I decided to add colloidal
silver to the regime, as no known organism has ever developed a
resistance to it. I just started that last night though, so I know the 7
days a week is what FINALLY has me in recovery mode again. There may be
a major herx down the line for me, but at least now I know that whatever
bug I have really does need a continuous supply of the antibiotics to
beat it.
Sorry to be so long, but one glaring omission that I have found
extremely disturbing is that the web page with recovery stories on it
has not one single AS posting. There is one link to a fellow that had
ReA (reactive arthritis) who simply theorizes that AS is identical but a
different organism than he had. Well I am bound and determined to have
my story on that page someday as a complete recovery and I'm going to do
everything in my power research-wise and understanding-wise to get to
the heart of how to kill off these bastards (excuse my French!). And I
want ANYONE with AS to help me do it and walk the road with me.
Best - Jan

Is there anything you guys do in particular when you are going thru a
monster flare? I'm am screaming all over - neck,shoulders,hands,hips,
knees, feet - takes all my effort just to stand, feel tired now. Do you
just lay down and rest - does that make it feel better or do you just
stiffen up worse? Not sure if I should try to keep moving or just not move
period. Also - have any of you ever had this stuff affect your vision?
Last few days, my vision doesn't seem to be quite right - thinigs are just
not as sharp as they should be - makes me want to blink now and then to try
and refocus. Can this be the RA affecting it? I know some of you have had
this stuff really bad - I used to sit here and think - boy, glad that's not
me. Well, now I know how you felt - gads.
Any thoughts are appreciated!
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day;olive
leaf;slippery elm;Zone Diet
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html

Hi Gang,
I wanted to share the home experiment we did . After reading the
book "Olive leaf extract" is spoke about making a paste out of olive
leaf and a few droops of water.
My husband woke up the other day with the tingling signs of a
fever blister coming on. I told him about the olive leaf paste and he
was willing to give it a try.We made the paste and the first night he
put it on to sleep with a band-aid over it. In the morning it had
already come to a head. He did it again two more nights. By the morning
of the 4th day it was all dry and gone. Now this usually takes 2 weeks
to come about and heal. It was all over in three days of treatment. We
are really happy to know that it really works against this so I know
it's healing my Yeast.I did feel better with my yeast ,but felt what if
it's all in my mind. Now I know it works!!!Try this at home next time
you get a fever blister. So glad I orderd a case from East park
research. Hubby is now taking it every day too.!!
Take care , Yoly

I know a few of you have some thyroid problems so I thought I would see if
you could guide me with what else to do
I just received a fax from my sister Teresa who lives in Bolivia. Her
thyroid has not been working right for about 3 years, it started after the
birth of her little one (first one) which she had when she was already 41.
She first had an overactive thyroid. Her eyes began to protrude. She had a
laser or x-ray treatment to kill part of the thyroid. She then said that her
thyroid had become underactive and she was put on drug replacement (I don't
know which one). In the meantime, her eyes "have continued to worsen, she
has double vision and her eyes tear constantly even while sleeping. She was
told she needs to take meticorten (a prednizone type) to reduce the
inflammation and something else to kill the antibodies (she doesn't remember
what), which should finally stop the growth of the eyes and then they can be
operated to remove the 'grease' or whatever has grown behind the eye."

Group
It never ceases to amaze me the prices of anything relating to
rheumatic disease, maybe it's a good thing the insurance company's don't
acknowledge AP.
On a other note I was at my Rhimys this morning and still hesitant she
had a more positive attitude. She also suggested that I should
communicate with another patient of hers that has been that has been on
AP for two years and is in [partial?] remission. This is most promising
. She has desided to take a more aggresive approch and ordered more
blood test .
Bonnie

I have been on minocin for about 8 weeks. I just noticed a purplish/red spot
on thigh. I was wondering of that could be a side effect of the AP with
minocin. Could those of you with knowledge of and/or experience with this
side effect please respond with info. If you did have this side effect, can
you stay on? Also, do spots get larger or what? How does this problem first
show itself?
Thank you all.
Susan

If any of you are interested in colloidal silver, this site and its
links are a gold mine. Apparently research has shown it is effective
against darn near everything. And for those of you concerned about
systemic Candida, the last couple of paragraphs goes into great length
to explain how effective it is against that particular problem, both
internally and externally.
http://utopiasilver.com/what_exactly_is_colloidal_silver.htm

Group:
Hi. Bill E. here again. I am the new guy with AS. I had my appointment
with the Osteopath who treats people with autoimmune diseases using
antibiotics and other "alternate medicine". First she (and I) are running
three tests which will be sent to the Great Smokey Labs for analysis.
1. Allergy test (took blood)
2. Gut permeability test (uses urine samples)
3. Stool sample test to see what "flora" I have growing in my gut (yuck).
Based on the results she will prescribe a diet and antibiotics to treat my
condition. If she finds an overgrowth of Klebsiella, she will probably use
Cipro. She said Klebsiella is easy to kill. She is on top of all we are
talking about in this forum, and has treated many patients with success.
I will keep my fingers crossed and you all posted.
Thanks,
Bill E.

http://www.ivanhoe.com/docs/backissues/anunusualkneetreatment.html
There is a study starting for use of doxycycline for osteoarthritis at the
address about

Hi Folks,
Well I just got my colloidal silver and glucosamine complex today (2
different products) You guys have undoubtedly posted doses on these
before, but I have lost my saved mail file at least twice in the last
month and lost everything I had been storing under natural treatments
and dosages. So if anyone out there is taking these, could you let me
know what dosage you're at to give me some idea what to try? If you
think it will be too repetitive and clog up the list, feel free to write
to me privately.
Thanks a lot! I can't wait to try them and see if they help!!! <g
Best - Jan K

I went to Dr Corell today, new patients see a physicians asst first
time. They have schedualed a bunch of blood tests and a sttol test for
yeast and other things. The visit lasted over an hour and cost $120,
they don't bill insurance which is bad, but I thought they were fairly
thorough. He wants me to read the first 6 chapters in Protien Power and
see a Nutritionalist next visit, he thought taking Olive Leaf was a good
idea. Next visit I'll have the lab work back and will see the dr. So
far I'm pleased with them.
Julie

For anyone who might have lymphedema, I have been using a homeopathic cream
called Lymphdiaral by Pascoe for the past few weeks. I have found it is
softening the edema and helping the swelling. My therapist who does the
manual lymphatic drainage technique said she felt it was definitely helping
(she had never seen the product before). This is my first experience with a
homeopathic remedy and it is definitely a positive one.
Linda

Hi Ethel,
I am totally confused as to what is an antioxident and which is the best
one for us to use, something that will not cause a flare. Your
recommendation would be most helpful for me to decide.
Regards,
Zanash

Group,
To all of you who answered my question about vitamin c I would like to
say thanks. I hadn't even considered that it might be a filler or other
ingredient because it is a new brand for me. Also I am planning to get
some antihistamine as suggested.
I haven't been out of the house in over 3 weeks because I have been in
a halo vest brace for the last 3 weeks. My husband has to do all the
shopping. I gave him a shopping list for Kroger and he said it took him
over an hour. I told him he should considered himself lucky because that
was the first time in 35 years of marriage that he had to take a
complete list. Anyway I can see him trying to find an anti-histamine.
I saw the surgeon who did my second neck surgery and he was afraid there
was still movement. I've been very depressed but I started wellbutrin
and pregnenolone and am feeling much better. If anyone out there has
worn one of these, will you let me know the outcome?
Helen

hi davo, it was a long fall, but iam sleeply pain killers iam in lua lua
landdddddddddddddboy what pist me off was i lost the dam fish good trout lost
parts of my brains i donation my partswhen i go by by, but ///////my brains
are worth big bucks, well not now i lost some on big ROCKS well you got any
IDEAR for ribs pain /////////// there was this 14 year old up there
///////// LISSON KIDS this 14 year old boy made a home MADE BOMB cops came
cops wanted it the kid hid it under arm well parts are every where when oh
when are kids going to learn I said a good prayer, but ///// you all pray
for him i dont know his name it was up north, well thanks for writing, marie
from Maine

I have been re-reading The Road Back and keep thinking about the allergic
component of RA as Dr. Brown described RA as a bacterial allergy. Ethel
mentioned recently that Dr. Brown used anti-histamines sometimes as part of the
treatment. It seems logical to me that if this is an allergic process, treatment
with something to cut down on the allergic reaction might afford some relief
from swelling and damage while we are waiting for the antibiotics to work. Could
adding anti-histamines possibly help us cut down on the use of
anti-inflammatories and get better results?
I was wondering if any of you had any thoughts on this, insights into this
aspect of treatment and it's relation to the AP, experiences with
anti-histamines as related to arthritis, etc, that you might share.
Someone posted a link awhile back that had a really good diagram of how the
immune system acts in RA, but I cannot find it in my files. Could you repost it
please? Thanks in advance. Liz G

I also found the peroxide baths to be of little or no help for me. I
even felt I was more uncomfortable afterward because I found it very
difficult to lie in the tub for 30 minutes. Of course, I was in the
middle of a pretty severe flare at the time where not much of anything
was helping and we're all different so what doesn't work for me may help
someone else.
Paula

A lot of people talk about diet being as important as antibiotics in the
protocol. Dr. Mercola outlines a diet (sorta Zone) and recommends Dr.
D'Adamo's site. I am wondering if people are following the Eat Right
For Your Type diet as well as Dr. Mercola's diet? I have been on Dr.
Mercola's diet for several years, but I still react to foods. I was
going to have allergy testing done, but am wondering if the blood-type
diet would be better? Or, vice versa. Your experiences with food would
be greatly appreciated. Thanks. Deb

I have found out that this is also sold to athletes for sore muscles.
There is an Emu oil company that has an 800 number. I got it but lost it
and will have to ask the neighbors for it again. I havent searched on
the net about it but bet it would be lots cheaper if you find it at some
local herbal place. Anyway it really does seem to help.
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

Hello All,
My D.O. had me start on clindy this week (2-150 mg pills twice per day on Tues &
Thurs). I am still taking the 200 mg minocin MWF (both are brand names this
time). I have only been taking one acidophilus per day and not sure if I should
increase now. It reads on the label "4 billion potency, 6 probiotic strains,
dairy free".
I also started the Olive Leaf Extract last week, but it only says 6% oleuropein.
I've been taking 3 pills of this per day also, but noticed everyone is talking
about the one for 38%. Would someone kindly send me the phone number for the
vendor that carries that one?
This group is great support and thank you for your advice. I am looking forward
to hearing from you!
Dawn
RA 13 1/2 Years AP 1 Year

hi guess its time to let you ll know iam one sore ????MY ribbs hit me today,
nothing they can do, boy i still look like
blackbeauty.//////////////////////// rib bad got any idears dr dont...hurt to
talk, my husband loves that..well went to hosp by rescure, stuipid med, was
wrong for me had relaps never had that before scare the
////////////////////////////////out of me well i got to learnto slow down.
gee good to be bk to read everyone mail thanks carol diane and the rest of
ya. marie from freeport maine

Hello all,
I have a question about the slippery elm. I started taking it a few
weeks back, I forget the brand name, but it was 333mg of SE per cap and
the instructions said take 3 to 4, 3 times a day. When I ran out, I
ended up purchasing a different brand that has 300mg per cap and the
bottle says to take it once a day. Thus the confusion....
So, how much are the rest of us taking? Anyone an authority on this
subject?
Any help would be greatly appreciated!
Thanks,
j.

Hi Chris
First I would like to thank you for forwarding all the info. to me . I
am going to the rhumy on Friday armed with the list of doc.and FAQ plus
some of the feed back from our group.
Thanks Again
Bonnie

Hi Group:
I read several postings lately on grape seed although I don't know what it is
supposed to help. Wondered what the group's experience has been?
Thanks,
Harry

Bob Andrews
I started AP 9 mths ago on minocycline, in Feb I was changed to doxy and
in april I was experiencing edema in my left ankle. Not only was it
swollen but it throbbed for two mths. with no relief. I am happy to say
that the pain is gone but the swelling is still. My ankle is still very
weak and I am still on doxy.
Bonnie

Has anyone had trouble getting prescriptions for Zithromax for longer than 5
days at a time? I have Blue Cross insurance and they will only give me 5 days
at a time (pharmacist explained that normally a 5 day course treats most
people's symptoms, especially since this drug stays in one's system for a long
time - (not sure what a long time means here,but..) This means I have to make a
60 mile roundtrip voyage every 5 days to the drugstore , which is a royal pain.
I also do not think they will allow me to have Celebrex either. They faxed a
form to my doctor and it was asking if I had bleeding problems from current
nsaids and my age, etc. The nurse suspected they would not approve it due to
the fact that I didn't meet criteria for the drug -( bleeding or stomach
problems from other drugs, age,etc). Anyone else here taking Celebrex whose
prescription plan tried to block it? I guess they would prefer I put a hole in
my stomach, pay for that operation (maybe they figure I'll just kick the bucket
and they'll be done with me!), rather than give me a medication that might
lessen the chances of me developing a problem. Weird.
Bet they wouldn't let me have Enbrel either if I wanted it , if I hadn't tried
methotrexate or other Dmards.
Mark
http://members.tripod.com/~Mark_Holmes
http://www.bbonline.com/va/foxhill (Work)
Member of the World Photo Gallery at http://www.WorldPhotoGallery.com

Hello everyone,
On July 20th, I shall be going out West to Kelowna, British Columbia. I have
a very dear friend out there who has asked me for three years in a row, so
now I decided why not? It is now or never.
Hopefully, the flight attendant strike will be overwith at AirCanada before
I leave.
I have to say the Canadian Government must be pulling at the hairs with all
hell breaking loose here. There are so many things happening it is amazing.
We have docotrs leaving to go work elsewhere, extensive lists of patients
needing surgery that they have to go to the states, the pharmacists are
wanting to leave, the nurses in Quebec are on strike, the ambulance guys
want to go on strike and now flight attendants are on strike. That is about
400,000 people right there. Yikes!
I am unable to get my IV's this weeks because of the nurses strike which I
hope won't make all hell break loose in my body.
On August 5th and 6th, I will return to Ottawa and pass some allergy tests
for the Cipro drug to see if we can desensitize me. The last time I took it,
I had respiratory problems.
Oh, lastly, anyone of you in Vancouver who know of a hotel that is near the
airport at a good rate, can you let me know of a name or two?
Thanks, Kathryn

Hello Group,
Has anyone seen the book The Arthritis Bible by Craig Weatherby and Leonid
Gordin, M.D.? My sister brought it to me from her bookstore in Albuquerque,
and it seems pretty good. The subtitle reads, "A COMPREHENSIVE GUIDE TO
ALTERNATIVE THERAPIES AND CONVENTIONAL TREATMENTS FOR ARTHRITIC DISEASES. .
.", and it does cover a wide range of treatments. The book has an entire
chapter on antibiotic therapy, talks about Dr. Brown, The New Arthritis
Breakthrough and The Road Back Foundation. The chapter sums up with the
following:
"Before moving to antibiotics, it makes sense to try a medically supervised
therapeutic plan that combines dietary changes, therapeutic supplements
(vitamins, nutraceuticals, herbs), physical therapy, and various mind-body
techniques. . .Many people may be able to rely on natural therapies
indefinitely. . .If not, antibiotics seem to be a safer, fundamentally more
germane choice than gold and other rheumatoid arthritis drugs. . ."
Bye,
Kari

Hi Group - I started Slippery Elm and OLE this weekend.
I'm feeling very good. At this time, can't tell if it's
that darn mtx I recently started or the SE and OLE. My
joints are feeling pretty darn good! Maybe I'm just having
some good days...time will tell.
Thought I'd throw this problem out for comment:
The problem is my achillies tendons - especially on the
right. It feels like someone hit me in the tendon with a
grocery cart going about 100 miles per hour! If you've ever
had a kid nail you in the tendon with a grocery cart, you
know exactly what I mean. These have been a problem before
but only this bad when I first came down with RA.
Last night I tried cold, then moist heat. Didn't help a
whole lot. The best thing I've found is staying off the
feet...not walking. That's pretty difficult when I have to
go to work every day. I remember someone in the group
talking about tendon problems...Geoff? maybe? I also
remember my Dr. saying that tendonitis comes and goes in RA
patients. One other thing that helps is wearing higher
heels..taking the tension off the tendon. The bad thing
about this is I'm so unsteady on my feet that I twist the
wrong way and the pain is unbearable.
I take LOTS of supplements - all the right ones. Have tried
curcumin and a couple of others in the past but didn't
notice any improvement...only diarrhea.
If any of you can share "tendon" experiences with me, I'd
really appreciate it! Thanks for being such a great
group!!! I love ya all!!!
Lea
RA 16 mo, AP 8 mo.

I was wondering if anyone had ever heard of any research, theory, speculation,
etc about whether the new IgE inhibitors may have a role in controlling RA, if
it is indeed a bacterial allergy response. Liz G

http://www.wellness.demon.co.uk/index4.htm
Interesting site of an Amsterdam clinic that has info on rheumatic disease as a
bacterial allergy.

I noticed that since starting AP (hopefully not before), when I sweat a night I
STINK in the morning. My kids won't even climb on my bed it smells so bad...
Is this a common symptom? (I can see a personal hygiene e-mail coming my way)
Mike

Geoff: I seem to recall you saying something about Minocycline causing
edema. Would you expand on this?
Bob

Having bought Noni juice too...I noticed it tasted a LOT like aloe. I
suspect the benefits are similar
-Mike-

Ok,
I had to share this one.
My ankles have been swelling and feeling like they are sprained so I have been
dropping meds to see if that was the problem. IN the mean time we are looking
at the coincidence that it all began with the IV's starting in April. Talk
about herx from hell.
Anyway...the point of this.
I stopped taking my anti-inflammatory (NSAID) Naproxen three weeks ago thinking
the edema could be from them. I have been taking this freaken drug for over 4
years, since the onset of my Scleroderma. And guess what? I don't feel any
different.
I can't believe I took the thing for so long. I thought I'd crumble into a
heap of stiff, aching pain.
NOT.
Donna
Ottawa, Canada
Scleroderma, Jan.95, AP Oct.97
(My Story) www3.sympatico.ca/mousepotatoes

Hi group,
About a week ago I started itching and having a rash and I have narrowed
it down to vit. c-which I have taken for years. How could this happen
and does anyone have any suggestions? I feel like vit. c is the most
important vitamin of all.
P.S I didn't mean that I have taken the same brand for years. What I am
taking is 1000mg natural from Vitamin World
Helen

Elizabeth, I haven't seen any messages come across to you mentioning the
book, "Arthritis Breakthrough" by Dr. Thomas McPherson Brown and Henry
Scammell. If you haven't read it, I strongly recommend you do so. After
you have read it, the group has a lot of answers for the questions you may
have. Feel free to reach out. This is a loving, helpful group. Billie

Date: Wed, 30 Jun 1999 20:32:41 -0400
From: caron branch <caron777@...
How do I prevent drainage of my left knee every three weeks? I have had 4
scopes in this knee, in addition to bi-lateral foot resections , cervical
fusions, scopes on both shoulders, hand synovectomies. I am a 49 yr old
female with severe RA. I am a Junior College professor and a hospital case
mgr. I love my careers yet hate the daily pain which occasionally
interferes with my productivity.I am now facing another knee scope or an
artificial knee. What causes constant fluid build up on my knee and is
there an alternative treatment to surgery?