Auto-immune diseases

Has anyone had a problem with indigestion while using MSM? I am taking 2000
mg daily. Is this an okay dose? I am trying to be aggressive in taking the
MSM to clearly see if it causes any improvement.
Also, Have any of you taken Nutra-joint Gelatin powder for any length of
time? Any improvement? How much of that should I try daily?
Thanks,
Carol*

<A HREF="http://www.geocities.com/~drm/"
Monthly (DRM) Guide to Disability Resources on the Internet
</A
http://www.geocities.com/~drm/

Hello all,
For those of you who using erythromycin or Biaxin antibiotics,
did you start at a low dose and have it gradually increased? If
so, what dosages did you start at and how is it increased? I know
that starting at high doses isn't good, as you can develop
allergic reactions. Is it also taken three times a week only?
Thanks,
Kyla

thanks for all of the response and appreciation for the poem that I sent
entitled, "The Struggler". Everyone in this life who lives and is "in there"
does struggle, not a bad word. Do any of you every experience edema in the
feet/ankles and even in the legs after you have been on antibiotics forawhile?
The swelling is pretty bad right now. I have been on antibiotics, of course,
for the pneumonia, etc. from my recent hospitaliztion; then I was on doxycyline
for RA ; now I am taking z-pak (azithomax) for sinus infection. I am just
concerned about the swelling. I go to the doctor next week. There seems to be
also a tightness and a hurting in one of my calves in my leg. Maybe I need some
more food rich in potassium or take another potassium pill that day
(prescription) K-Dur 10 MEQ a day) It is hard to walk sometimes with all this
swelling. Even at night after elevating my feet, morning not much better. Is
this a flare or a herx? Thanks for your input. I realize you do not know what
the diagnosis might be, but just your thoughts? Martha St. Aug.

I am forwarding this in remembrance of our prisoners of war.
No matter what you think of our Countries actions... we should remember
them in our prayers.
***********************************************
Subject: Prayers for the 3 American Soldiers
As many people know, there are three American soldiers held captive near
Yugoslavia. I (Jacki S.) am starting a prayer chain for them. I want
everyone to type their name down on this, and pass it on. Every name on
this, means a prayer for the soldiers. Please. sign it and pass it on so
these brave men can know we are looking out for them. So copy this and
paste it in new mail and send it to as many people as you can. (Or just
type your name at the bottom, then forward)
**Don't forget to make a YELLOW BOW and put it up to remind others to
pray and keep them close to their hearts!**
those who pass by too! We're going to put a second one on the flag
pole. God Speed!

Hi Group! Geoff Crenshaw here.
Along the line on seritonin (sp?) it appears a hypothesis is in order:
HYPOTHESIS: Remaining quiet and in a darkened
environment during normal sleep cycles,
even if awake, encourages production
of specific hormone, cessation of
chronic pain cycle, repair of damaged
tissues and relief of depression
IF Seritonin is the hormone produced in the dark
which enhances/encourages sleep; and
IF Seritonin supplies are depleted during a severe
and long-lasting bout of pain; and
IF Seritonin enhanced sleep cycles are necessary
for encouraging the body to produce more
seritonin; and
IF The deep sleep cycles are necessary for repair
of damaged tissues
THEN It would seem likely that upon being subjected to
an awakened state in the middle of the night if
the victim were to remain quiet and comfortable
in the fully darkened environment with no lighting
(i.e., NOT arise and read, watch
television, get out of bed and
wonder about, work at the computer,
etc., but instead perhaps lay quietly
in bed listening to music of choice
in headset)
THEN The natural dark state production of seritonin
might be enhanced and thus help to break or ease
the chronic pain cycle.
Yesterday I believe it was, one of you posted an enlightening message on
seritonin and the pain/sleep/depression cycle so common to many of us.
I've lost that post and was wondering if you might please send it to me
again privately.
--
Regards,
Geoff Crenshaw, ACC

I am starting Minocin Monday! I'm very excited. I have mild Ra and want to
know what dose I should start at. BVecause I tend to get dizzy I'm tempted
to start at 50 mg once a day. When should I take it? When increase? What's
maximun for me to get best results. Please advise!
WISH ME LUCK! I am excited but scared of it not working. Also worried re:
discolored teeth and skin!
Any advice re: dose appreciated.
I am away this weekend.
Will respond Monday.
THANK YOU ALL, YOU"RE GREAT!
Susan

Hi Group! Geoff Crenshaw here.
Suzz (of our group) has reported that her daughter Jenna is in complete
remission of her Reiter's vis a vis RA SPES. She is in the process of
preparing a web site on RA SPES based primarily on the information we as
a group collectively amassed in our nearly 500 posts on the subject.
I expect, although I am not certain at this time, that said web site
will provide information on: the herbal contents; their individual
effects; attempts at hand-crafting clones; good-faith mix-ups with other
herbals whose names are similar but not the same; postulates on the
synergistic effects; positive and negative commentaries from those of us
who tried RA SPES; unanticipated side effects; background on the
manufacturing laboratory; purchasing locations; and reports of clinical
trials.
Several months ago I acquiesced to being a conduit for money-saving
information on RA SPES between those in the group who wanted said info
and the discount supplier. I am too busy to continue filling that role
but the product and information is still available via telephone to the
supplier for those interested.
HTH.
--
Regards,
Geoff Crenshaw, ACC

International Digest
Topical calcitriol therapy for psoriasis
Canadian Medical Association Journal 1996; 155: 909
Source: Perez A, Chen TC, Turner A, Raab R, Bhawan J, Poche P, et al.
Efficacy and safety of topical calcitriol (1,25-dihydroxyvitamin D3) for
the
treatment of psoriasis. Br J Dermatol 1996; 134: 238-46.
To determine the efficacy and safety of topical calcitriol
(1,25-dihydroxy-vitamin D3) therapy for psoriasis, researchers in Boston
conducted a
double-blind trial in which 84 adults with stable plaque or
erythrodermic psoriasis applied 0.1 g of calcitriol ointment (15 µg
calcitriol/g Vaseline) to a
50-cm2 lesion and Vaseline alone to a similar, contralateral lesion each
night for 2.4 months. Lesions treated with calcitriol improved markedly
with
respect to scaling, erythema, plaque thickness and global severity score
compared with those treated with Vaseline. A subgroup of 22 patients who
applied calcitriol ointment in the same amount (up to 10 g) to all of
their lesions for 2 months after the double-blind phase showed
substantial
improvement in lesion severity and size without local side effects or
biochemical abnormalities related to calcium and bone metabolism.

Dear group,
Dona has been on antibiotic therapy for scleroderma for a number of years
now. It's really good to hear from her and how well she has recovered.
Dona says she welcomes enquiries and wants to help others, so please feel
free to email or phone her.
Chris.

April 15, 1999
Dear Chris,
My husband told me about the need to update my phone number and give our
e-mail address. Since I had asked people to call between 7 and 10 PM
weekdays, many thought I didn't want calls on the weekends but I'm glad to
have them call any time. I love to hear from people who are looking for a
treatment that works, and I can certainly testify that Dr. Brown's
treatment has worked for me. A portion of my story and a picture of me,
taken in 1997, demonstrating my ability to climb a ladder and wash the
outside windows, are included on page 305 of Henry Scammel's book "The
New Arthritis Breakthroug".
I have been in treatment since 1993 with Dr. John Sinnott of Ida Grove,
Iowa, who wrote one of the chapters in Dr. Thomas McPherson Brown's
book, "The Road Back". I continue to see Dr. Sinnott for a yearly checkup
and blood tests. In June of 1997 we decided to try discontinuing my
intravenous treatments since there had been no change in my condition or
the blood tests for some time. However, Dr. Sinnott wanted me to continue
the oral portion of my treatment (100mg. of Minocycline twice a day, 3
days a week), which I did until last June (1998), when we cut that in
half. My blood test in 1998 was still good after having been off the IVs
for a year, and I fully expect it to be good this year since Im feeling
fine. I have good energy and really have no remaining symptoms of
scleroderma, except my finger contractures, which Dr. Sinnott believes
will be permanent. I do have better closure of both hands now as I
continue to use them. I'm back to playing my big bass fiddle in our
bluegrass band and having a great life thanks to God and Dr. Brown's
treatment. I do expect to remain in Dr. Sinnott's care indefinitely to
continue to monitor my condition.
Dona Morris.

Did you see this in yesterday's paper? Interesting:
http://www.cnn.com/HEALTH/9904/13/writeoff.stress/index.html
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html

Make sure you get the right stuff!
http://www.cnn.com/HEALTH/9904/15/painkiller.errors.reut/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
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html

Check out this link if you're bothered by Spring allergies:
http://www.cnn.com/HEALTH/9904/16/allergy.alternatives/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
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html

When Julie was first diagnosed with linear scleroderma, her
rheumatologist, when he couldn't convince me to give her methotrexate
and prednisone, told me they were also treating it with vit.D. I don't
know why I didn't persue this any further at the but recently I found
some information online that makes me think it might be worth a try. I
know this article is in regards to localized scleroderma but I was
wondering if anyone has heard anything about this.
The way I look at it is, I have her on the antibiotics to encourage it
to go into remission. My other job is to try to prevent as much damage
to her little body as I can until that happens. I would love to improve
her skin's condition. It has spread to cover so much of her body.
I had a little chat with a local pharacist, who's wife had linear
scleroderma that's been in remission for 10 years, and asked what he
knew about potaba and calcitriol. He pulled out his book of drugs and
looked them up for me. He and his wife had considered Potaba but ended
up using penecillamine. He had never heard of using calcitriol in this
way. It comes in the form of capsules intended for use by mouth but he
supposed you could break the capsules open to use topically. He didn't
think there was an over the counter equivalent.
BTW, he had never heard of the mycoplasma theory so I explained it to
him and he was fascinated.
Jodi
mom of 5 year old Julie-linear scleroderma 1 1/2 years AP 5 months
CHICAGO -- Topical calcitriol offers a benign and effective way of
treating
localized scleroderma, said Dr. Amy Paller, professor of pediatrics and
dermatology at Northwestern University in Chicago.
Studies are underway looking at oral calcitriol, a promising new agent
for treating
both systemic and localized scleroderma. In the meantime, however,
topical
calcitriol may be a way to treat patients whose scleroderma is not very
deep, Dr.
Paller said at Academy '98 sponsored by the American Academy of
Dermatology.
In an open trial involving 12 patients as young as 12 years of age with
localized
scleroderma covering only up to 9% of body surface area, calcitriol
ointment was
applied twice a day, with occlusion during the nighttime application.
Clinical scoring at 1 month and 3 months after starting treatment showed
improvement of 40%-90% in all patients, compared with baseline.
At the end of the 3-month period, 11 of the 12 patients wanted to
continue the
treatment.
The mean hyperpigmentation score decreased significantly by 1 month and
3
months.
Likewise, erythema and telangiectasias showed a decline after both 1
month and 3
months of treatment.
Induration did not show any change at 1 month but did decrease
significantly by 3
months.
The topical treatment probably won't do anything to reverse soft tissue
atrophy, Dr.
Paller said. However, it can be used as an adjunctive agent,
particularly when new
lesions appear. Newer lesions appeared to respond more readily to the
treatment in
this study.
There were no adverse effects observed. None of the subjects experienced
a
change in their normal baseline levels of ionized calcium, parathyroid
hormone,
1,25-hydroxy-vitamin D, or urine calcium excretion.
"There was a lot more patient happiness than I've seen with patients
referred in with
various [other] agents. ... It's something worth trying because it's so
benign," Dr.
Paller said.
Although the patients in the study did not have greater than 9% body
area
involvement, topical calcitriol is probably safe to use in patients who
have greater
body involvement, she added.
INTERACT
Email this article to a colleague.

It seems like this is a prescription form of PABA, which is a B vitamin. I
am
not aware of its use in scleroderma. One needs to be cautious though with
its use as many people are PABA sensitive and may have adverse reactions to
it. However, the risk is small and it seems reasonable to try it. One could
search Medline for PABA and scleroderma to find out more.
Dr. Mercola.

Hi Folks,
Well I finally tracked down the name (I gave mine to my Mom
and had to call her
to get the name since I haven't replaced it).
It is: Viactiv
Made By: Meade Johnson, a Bristol Myer Squibb Company
Phone: 1-800-247-7893
Web Site : www.viactiv.com
Hope this helps all of us find it. Not in my local drug
store yet. I got the one
I gave away at Walmart and haven't been back for more yet.
:-)
Best - Jan K
Oh, I thought the price was pretty reasonable considering
it's taste. It was between $6.00 and $7.00 (US$) for 60
pieces.

Hi Connie and others,
I have been on Serzone for 3-4 years now and maybe I can explain something about
how it
works and the business of anti-depressants and pain.
First, I guess I've been assuming you all know about the pain cycle, but maybe
that's not
true. A person in chronic pain uses up their serotonin stores in their body, and
especially in their brain. Lack of serotonin results in a couple of things,
foremost of
which are lack of sleep, depression, and increased pain. I haven't been over
this in
several years, but if memory serves me correctly, it is also during sleep stage
IV that
serotonin is most effeciently replaced. This is also the time when bodily repair
functions operate.
If you get caught in a chronic pain cycle, you use up the serotonin by being in
pain, and
because you're in pain, you can't replace the serotonin. You spiral into more
pain with
depression thrown in for good measure. This is not a matter of depressed
psychologically
because you hurt. It is a physiological reaction to the reduced serotonin levels
in your
brain, which in turn prevent you even further from getting the sleep you need to
improve
the pain, etc. ad infinitim.
This is where the Serzone comes in (and other anti-depressants). They very
specifically
increase serotonin availability to the brain. They modulate some other
neurotransmitters
as well depending on the anti-depressant, but serotonin is the one common to all
used for
pain. The increase in serotonin is what allows you to sleep, and when you first
go on it,
you need to do a gradual build up to the right dosage to get the sleep. When you
start
too high, you get a serious serotonin rush that has you into very vivid,
hallucinatory,
often nightmarish dreams. You start low and do a build-up of 25-50 mg every 3
days or so
until you are sleeping well.
The side benefit is that as your serotonin stores are replaced, the depression
fades
away. NOTE: It is the pain being treated, NOT the depression. That is why the
dosages for
pain treatment are usually much, much smaller than when serzone is used for
primary
depression.
The most critical thing in all of these chronic pain situations is to get the
pain
stopped ASAP, because that's when the cycle starts and you go spiraling into the
gates of
hell. It is extremely important to get the pain stopped, even if it requires
narcotics to
do so. For most cases, just the anti-depressant support for the serotonin uptake
is
sufficient. But if you head into a major flare and can find no normal means (eg.
NSAIDS)
to stop the pain, then something like Vicodin or stronger is definitely in
order.
This is my past seven years experience in dealing with chronic pain and using
the
serotonin modulaters to deal with it. I've had some rough times since, but I was
in the
pain cycle continuously for a good two years to begin with, that nothing in the
past four
years can compare with. I truly came to believe that my core must be essentially
sane,
because I know the pain was so intense for so long that I should have wound up
in the
mental ward. I mean that in absolute, 100% seriousness.
So the best to you all and good luck with your anti-depressant ventures in
combatting
these myriad disorders.
Jan K

Kyla asked:
Does anyone know if AP is successful in treating Sjogren's
syndrome and Raynaud's disease?
Kyla: With me, it's been very successful. I have scleroderma (MCTD). My
"mix" includes the sclero., polymyositis, lupus, Sjogren's and Raynaud's. I
began the AP in May, 1998. At that time my SSA (bloodtest for Sjogren's)
was 127 out of 140 points - highly positive for Sjogren's. In January, 1999
my SSA was below O - or negative for Sjogren's. Thus, I no longer have
Sjogren's disease. This is the first bloodwork I've had to return to normal
limits.
Before I began the AP, I had almost no saliva and lots of oral health
problems. Not anymore. Not only do I have normal amounts of saliva, but
the tissue in my mouth has reversed back to normal limits. I had my first
round of gingival grafts at the end of January. When I went for my
consultation with the oral surgeon in May, 1998 she was convinced that
because of the dryness and fibrous/density of my tissue she would not be
able to use my own tissue for the grafts. Well - in January everything
looked normal and she said that my tissue looked just like anyone else's. I
healed slower than most folks, but the surgery was a success. I will be
able to keep my bottom teeth.
Also - my eyes aren't nearly as dry. The pollen is falling very heavy here
the past few weeks and I'm not bothered nearly as much as past years.
I could already tell a big difference in my Raynaud's this past fall and
winter as well.
Hope this helps -
Take care -
Linda C.

FYI....
http://cgi.pathfinder.com/drweil/qa_answer/0,3189,1511,00.html
j.

Dear Group,
I received several e-mail messages from the group in regards to my IV
treatment, etc. . Just wanted to let you know that I will e-mail each of you
individually on Monday-I will be out of my office until then. Just wanted to
let you know that I will be in touch!!
Thanks!!
Sue :-)
--
Susan S Estridge
E-Mail : sestridg@madison
Internet: Sue_Estridge@...
Phone : (704) 649-2411
FAX: (704) 649-2020

Sorry I didn't respond yesterday, was at the doctor. Have not been on
hormones for thyroid & adrenals; this was my first visit.
The good news for me was that she thinks I still make enough cortisol
that she doesn't want to put me on hydrocortisone, just Armour thyroid.
So I can't really tell you anything new except to suggest another book:
SAFE USES OF CORTISOL by William Mck. Jeffries, Charles C. Thomas Press,
1996.

I was recently diagnosed with RA by a blood test that found a high
rheumatoid level. I have some pain in either hand and one wrist, but the
reason I was at the doctor was excruciating hip pain. The hip pain is
getting better with ibuprofen and physical therapy. There is some
concern that it may be Ankylosing Spondylitis because my mom has that.
My main concern at this point is to start the antibiotic therapy before
I get any worse. I am wondering what experiences and advice anyone can
give me. I am running out of health insurance and so I may do the
therapy on my own, in which case I would need more information about
exact dosages and things to watch for.
Feel free to answer directly if your answer would be old news to the
rest of the group.
Thank you all.

Dear group,
Jan just updated her story on our web page and here is the update. Those of
you who haven't read Jan's whole story might like to have a look at
www.rheumatic.org/jan2.htm - thanks Jan and it's great to hear how well
you're doing :)
Chris.

I just received an e-mail from someone in the rheumatic group, who has been
notified by me of it, with a Happy 99 attachment. Please be extra careful not to
open any .exe attachments. This one shows up as a blank e-mail duplicating a
real e-mail the person has sent you, with an attachment titled "happy99.exe". It
is not a particularly destructive one, I am told, but passes itself on to
everyone you e-mail. This is not a joke, I really received one tonight, but was
aware of it and did not open it. As long as you don't run the attachment you
will not get it so don't panic, just check any attachments out carefully and
don't open them if you are not absolutely sure they are safe.

Dear group,
Dona is one of the people who has been on antibiotic therapy for years now.
She had severe, crippling and well advanced systemic scleroderma before
starting the antibiotics. Those doctors who erroneously say the antibiotics
only work for mild disease should read about some of these people.
Chris.

Hi everyone!
I've received lots of additions and updates. I plan to give you all a copy
of this information in just a few days, but I wanted to give anyone who
wanted a last chance to send info in. The info I'm tracking is:
First and Last Name:
Age (B-Day):
Disease (& how long):
Medications (& how long):
Where You Live:
E-Mail:
Comments:
You'll all get this info by the end of the week or beginning of next week!
Maria

Dear Group,
I had a call this morning from a woman in Florida, Judy Duncan, who has
scleroderma with heart and lung involvement. Judy came to Plano, Texas
about ten weeks ago where she was treated aggressively by Dr. Martin.
Since Judy had gone through chelation therapy in Florida just prior to
coming to Plano, Dr. Martin made arrangements for her to receive the IVs
back home by the same doctor.
Back in January, Judy was getting chelation one day and conversing with
others in the room about her disease diagnosis. (She was diagnosed last
November.) A woman told her about Henry Scammell's book and the next
time they were together for chelation, she brought a copy to Judy. A
nurse getting chelation at the same time overheard the conversation, and
during the next session she presented Judy with a large volume of
information she had downloaded from our web site. After reading the
information, Judy immediately started the diet with juicing and made an
appointment to come to Texas for treatment.
Before Judy left Plano for home four weeks later, x-rays showed the
heart was almost back to normal size, her blood pressure greatly
improved, hoarseness gone, swallowing difficulties improved, her skin
softer, and she could go up and down a flight of ten stairs 11 times!
She called today to report improvement is continuing. Her face is
looking more normal. You can pinch her cheeks and she is getting jowls;
you can see the veins in her hands, and the muscles in her leg are
flabby.
While Judy was being treated in Plano, the nurse who originally gave her
our material personally contacted a number of doctors looking for
someone interested in this therapy who would also offer the IVs. She
found one.
Daniel Mayer, D.O.
Joseph DiStefano, NC
8085 38th Ave. No.
St. Petersburg, FL.
Phone 727-572-6745 or 727-344-3134
They also have an office at:
4543 S. Manhattan Ave. Suite 103
Tampa, FL 33611
813-831-8888
Dr. Mayer is not experienced with the therapy, but he has all of our
material and says he will take patients and offer both IV and oral
therapy. Judy says he is very reasonable.
Ethel
Judy reports these doctors are not only very interested in the protocol,
but their charge for the IVs is very reasonable.

Can anyone speak to the issue of the effect of pregnancy on symptoms of
CREST and vice versa? I just found out I am pregnant so I stopped my
Minocin right away. It's been recommended that either erythromycin or
zithromax be used as alternatives. I have Raynaud's as my most troublesome
symptom and wonder how these circulatory issus could affect a developing
fetus. My other symptoms are telangectasias and an elevated ANA. Would it
be safe not to take any antibiotics, and would the Minocin still be
effective 8 months from now? Any adivce you may provide is appreciated.
Thank you,
Linda B.

Dr. Brown said allergies could cause flares, and rheumatic disease could
increase allergies, see "The Road Back". I have a copy of the new book out from
the library, write me if you can't get hold of one and I will look it up for
you, can't right this minute as I have to go out. LizG

Hello to everyone.
I've started Minocin without the support of any doctor in Greece.I believe
that everything will go fine. Since I have noone else to ask questions I think
that I'll be a trouble for you. I'd like to ask when should I have my first
laboratory tests to see how I'm going and how dangerous is to stay under the
sun while taking antibiotics. Could some special ointments help? Thank you.
Angela-Scleroderma.

Dear Group,
I hope everyone is doing well. I have been off-line for quite some time. Mostly
due to work, kids, soccer, church, 4-H, etc. etc.
Just wanted to touch base with you all and bring you up-to-date with my
progress.
First, the AP Support Group that myself and a few friends started is going
well. Our next mtg. will be in June in Asheville, NC (never too early to start
advertising!). Date TBA.
Second, I saw my rheumatologist the first week in March-not because I really
needed to see her but to let her see for herself how well I have been doing
(for those of you who don't know my story, I began clindamycin IV's the first
week in Dec. '98- I have had RA since Oct. '95). My rheumy/internist is very
professional and not a "warm fuzzy" kind of person. She knows I'm on the oral
antibiotics because she "humored" me by putting me on them in June '97. I
slowly weaned off of MTX and was completely off by June '98.
Anyhow, after her complete examination (poking and prodding at every joint on
my body, it seemed) and asking does this hurt? Are you fatiqued, etc. (and I
basically said "no" to every question), she looked me in the eye and said,
"you're a miracle"... and I can honestly say she said it w/out being sarcastic.
I about fell over! But I remained very cool (LOL)-at this point I could have
told her that I have been doing IV's but I did not. First, I did not want to be
intarigated (sp) by her and second, I plan to bring her all my blood work one
year from the start of my IV treatments-which will be Dec. '99-and I am hoping
and praying that my blood work will have returned to normal ranges-so the proof
will be in the pudding.
So, for those newbies who are considering the AP-don't wait. If you can't
locate a MD to do the IV's-continue on the oral-but continue your search for
one who will. I searched for a MD for one year and found one very close to
where I live. He had never heard of the AP therapy but he LISTENED to me. Now
his practice is growing like a weed with rheumatic patients and he was busy to
begin with! He is presently writing a book adn plans to include the AP.
The IV's is what my body needed for that "extra punch". One of my friends from
the support group who has RA, Lupus and Scleraderma started IV treatments in
Jan. 99. She is improving immensley-we are all soooo excited for her! She says
her skin is beginning to wrinkle again!
If you wish to write me, please do. I will help anyone I can with this
therapy-it has given me my life back and I am grateful to this support group
for all of their help and prayers.
Sue :-)
Sue_Estridge@...
--
Susan S Estridge
E-Mail : sestridg@madison
Internet: Sue_Estridge@...
Phone : (704) 649-2411
FAX: (704) 649-2020

I don't know about any of you, but does anyone ever wonder
whether exposure to things you are allergic to can trigger flares
or aggravate your auto-immune disorders?
I moved back to my parent's house two years ago and that's when I
swear that's when I began to feel ill again. Their house is quite
old and had problems with dampness and mold. Not long before I
had my first arthritis flare in years, I had looked behind the
head of my bed to find the whole area of the wall covered in
black mold, to which I am severely allergic to.
I sometimes wonder if constantly being in a house that has alot
of mold is hard on my system. I always wake up with bad
headaches, my eyes all dry and sticky, it just feels all clogged
and congested. And I never feel well rested. I truly wonder if
all that mold may have triggered my flare a month ago. I have
also developed alot of food allergies since moving back home. My
system is extremely hypersensitive.
I do know that the people who lived here before us had frequent
bouts with bronchitis and pneumonia, and so have most of us in
the family.
Anyhow, I am hoping that when I move in the fall, my system will
improve somehwat after moving to a more healthy environment for
me. I am also hoping to start AP soon, and maybe the allergies
will improve with it.
Just thinking outloud again... :)
Cheers,
Kyla

The article I read says you can eat it in salad or make a (bitter ) tea of it
but the best potency is dried or ground up in capsules. I haven't found it at
our health food store yet. Ethel, could you advise us where to get it or brands
available, any tips as to whether one is better than the other? Are tinctures
available to your knowledge and would they be as good as capsules? I want to add
this to my supplements. Thanks, LizG

Does anyone know if AP is successful in treating Sjogren's
syndrome and Raynaud's disease?
My sister's mother-in-law has these two disorders, and was
wondering if she could take antibiotics for these conditions
alone?
Thanks,
Kyla

I was corresponding with a mother who's little girl had linear
scleroderma from the age of 6 to 11 during the late 60s and early 70s.
At the time her doctor was only aware of 10 cases globally(poor woman).
Eventually her daughter was given Potaba, which she says cured her
daughter. In her words, "it stopped it in its tracks". Her daughter is
in her 30s now with no recurrence. She, unfortunately, now suffers from
osteoporosis...which I assume is from all the prednisone she was given
in her early years.
Has anyone ever tried this drug? I had a hard time finding anything on
it but I found a pharmaceutical company who offers it along with this
information:
Aminobenzoate Potassium, U.S.P.
long term oral therapy
low in incidence of drug interaction
available by prescription from any pharmacy
highly soluble in water, readily absorbed
not limiting to normal activities
no cumulative side effects
low toxicity
FORMULA
POTABA® is chemically a pure Aminobenzoate Potassium, U.S.P.
INDICATIONS
Based on a review of this drug by the National Academy of
Sciences-National Research Council and/or other information, FDA has
classified the indications as follows:
"Possibly" effective: Potassium aminobenzoate is possibly effective in
the treatment of scleroderma, dermatomyositis, morphea, linear
scleroderma, pemphigus, and Peyronie's disease. Final classification of
the less-than-effective indications requires further investigation.
FURTHER INFORMATION ON CLINICAL USES
ADVANTAGES
POTABA® is a means of treating serious, often chronic entities involving
fibrosis and nonsuppurative
inflammation.
POTABA® acts gradually. Length of therapy varies with disease state and
extent of involvement.
With POTABA®, excellent benefits are possible with very little risk.
There is a good potential for softening hardened tissues. POTABA®
therapy requires the maintenance of adequate dosage over a sufficient
length of time. This is usually a minimum of 2 to 3 months.
PHARMACOLOGY
P-Aminobenzoate is considered a member of the vitamin B complex. Small
amounts are found in cereal, eggs, milk and meats. Detectable amounts
are normally present in human blood, spinal fluid, urine, and sweat.
PABA is a component of several biologically important systems, and it
participates in a number of fundamental biological processes. It has
been suggested that the antifibrosis action of POTABA® is due to its
mediation of increased oxygen uptake at the tissue level. Fibrosis is
believed to occur from either too much serotonin or too little monoamine
oxidase activity over a period of time.
Monoamine oxidase requires an adequate supply of oxygen to function
properly. By increasing oxygen supply at the tissue level POTABA® may
enhance MAO activity and prevent or bring about regression of fibrosis.
DOSAGE INFORMATION
POTABA® therapy is most acceptable when taken in conjunction with meals
or snacks. There are no specific foods to avoid but a normal dietary
intake should be maintained. The Average Daily Adult Dosage is 12 Grams
of POTABA®.
Adults
The average adult daily dose of POTABA® for scleroderma, morphea,
linear scleroderma, and Peyronie's disease is 12 grams, usually given in
four to six divided doses. Higher doses (15 to 20 grams, daily) are
initially used in dermatomyositis. Tablets and capsules 0.5 gram are
given at the rate of 4 tablets or capsules 6 times daily, or 6 tablets
or capsules given 4 times daily, usually with meals, and at bed-time
with a snack. Tablets must be dissolved in an adequate amount of liquid
to prevent gastrointestinal upset. POTABA® envules contain 2 grams pure
drug powder, and constitute the individual average dose. Six envules are
given for a total of 12 grams POTABA® daily.
Children
Children are given 1 gram POTABA® daily in divided doses for each
10 Ibs. of body weight.
PRECAUTIONS
Side Effects
Anorexia, nausea, fever and rash have occurred infrequently and
subside with omission of the drug. Desensitization can be accomplished
and treatment resumed. Should anorexia or nausea occur, therapy is
interrupted until the patient is eating normally again. This permits
prompt subsidence of symptoms and also avoids the possible development
of hypoglycemia. Give cautiously to patients with renal disease. If a
hypersensitivity reaction should occur, POTABA® should be stopped.
CONTRAINDICATIONS
POTABA® should not be administered to patients taking sulfonamides.
USAGE IN PREGNANCY
Safety for use in pregnancy or during lactation has not been
established.

==
WHO WE ARE
There is no such thing as a 'self-made' man. We are
made up of thousands of others. Everyone who has ever
done a kind deed for us, or spoken one word of
encouragement to us, has entered into the make-up of
our character and of our thoughts, as well as our success.
George Matthew Adams
==============================
A GIFT FOR MOTHER
There was a man who traveled all around the world.
Every city he stopped in he would buy something for
his mother and send it to her. On one such stop he
found a parrot that spoke thirty different languages.
He immediately bought it and sent it home to his
mother.
A few days later he calls his mother. "Did you like
the parrot?" he asked her.
"Oh yes," she replied. "It was delicious."
"WHAT!" the man cried. "You ate it! That parrot
wasn't for you to eat! It spoke thirty languages!"
The mother paused for a moment and then said, "So
why didn't he say something?"
******************************
VISION
Your vision will become clear only when you look into
your heart. Who looks outside, dreams. Who looks
inside, awakens.
Carl Jung
==============================
PRIORITIES
One day a time management expert was speaking to a group
of business students and, to drive home a point, used an
illustration I'm sure those students will never forget.
After I share it with you, you won't forget it either.
As this man stood in front of the group of high-powered
overachievers, he said, "Okay, time for a quiz." Then he
pulled out a one-gallon, wide-mouthed mason jar and set it
on a table in front of him. Then he produced about a dozen
fist-sized rocks and carefully placed them, one at a time,
into the jar. When the jar was filled to the top and no
more rocks would fit inside, he asked, "Is this jar full?"
Everyone in the class said, "Yes."
Then he said, "Really?" He reached under the table and
pulled out a bucket of gravel. Then he dumped some gravel in
and shook the jar causing pieces of gravel to work themselves
down into the spaces between the big rocks. Then he smiled
and asked the group once more, "Is the jar full?"
By this time the class was on to him. "Probably not," one of
them answered.
"Good!" he replied. And he reached under the table and brought
out a bucket of sand. He started dumping the sand in and it
went into all the spaces left between the rocks and the gravel.
Once more he asked the question, "Is this jar full?"
"No!" the class shouted.
Once again he said, "Good!" Then he grabbed a pitcher of water
and began to pour it in until the jar was filled to the brim.
Then he looked up at the class and asked, "What is the point of
this illustration?"
One eager beaver raised his hand and said, "The point is, no
matter how full your schedule is, if you try really hard, you
can always fit some more things into it!"
"No," the speaker replied, "that's not the point. The truth
this illustration teaches us is: If you don't put the big rocks
in first, you'll never get them in at all."
What are the 'big rocks' in your life? Something that YOU want
to accomplish? Time with your loved ones? Your education, your
finances?
A cause? Teaching or mentoring others? Remember to
put these BIG ROCKS in first or you'll never get them in at all.
Tonight or in the morning when you are reflecting on this
short story, ask yourself this question: What are the 'big
rocks' in my life or business? Then, put those in your jar
first.
Unknown
DO IT
Do not let what you cannot do interfere with
what you can do.
John Wooden
==========================

I saw my rheumatologist last night. He is precribing Minocin for me mainly
for its anti-inflammatory properties and because methotrexate was not doing
anything for me. While it would be wonderful if he believed in the AP, at
least I know he's listening to me and I know he's objective. So when he
said that I am better than I was in January (at that time he said I have not
worsened in the year I had been on Minocin), I was quite encouraged. There
is still some inflammation in my left hand and elbows, but he feels I'm
stable (I have not been stable in many years). He said when something safer
than the current mainline drugs comes along, he will be encouraging me to
take it. But in the meantime, he sees improvement, I feel better and I've
got more time to let Minocin do its work (I've been on it for 17 months
now).
We also talked about the new NSAIDs like Celebrex. He said that they have
found when they do scopes that there are fewer signs of ulcers from Celebrex
and Vioxx. However, they are also beginning to find that this does not
necessarily mean there is no chance of bleeding. Apparently there is a role
in that played by the relationship between the stomach and platelets, and
that a lot of NSAIDs affect the platelets. Relafen is considered about the
safest of the standard NSAIDs, but I'm not sure how it compares to the new
class of cox-2 inhibitors. Perhaps it's too soon for them to know since the
new drugs have not been out for long.
Linda

Someone posted a link about mycoplasma from a Michigan law
school site last week. I accidently deleted my whole bookmark
list and wanted to add that site back in. Does anyone have the
link? Thanks, Vern.

A few days ago, I asked about a reaction to curcumin involving
weakness/fatigue. Yesterday I spoke to my naturopath who said curcumin also
helps to detoxify the liver. Normally when I start a new herbal, I begin at
a very low dose and gradually build over 2-3 weeks. With curcumin, I jumped
right in for 3 per day, although I noticed pain relief within 1/2 hour! She
thinks that I started too high for my body and that the weakness/fatigue was
due to the detoxification process in my liver. I am going to try starting
again at just 1 daily for a while and then perhaps build, depending on how I
do. She seems to feel I might get results with just on a day.
Linda

Hi Folks,
I have just about had it with the pain in my right hip so
it's time to ask if anyone can tell what kind of pain this
is.
History is a head-on collision 7 years ago where my forward
momentum was stopped by my right knee hitting the dash (only
the right knee and since no seat belt bruise, mostly the
right knee). I could barely stand or put weight on it and
the leg was shorted by about 1 1/2 inches according to the
DO at the time. I KNOW it had a lot of spasms which were
given cortisone shots and have been through lots of massage
therapy to break up. X-Rays in the first year never showed
any damage.
When I was at the doc 3 months ago I complained about the
him (again!) but I insisted I knew it was a trigger point
spasm I'd been dealing with for 7 years now, while he wanted
to call it arthritis and shoot it up. Well he doesn't do
trigger points (sigh, and I could use some) so it didn't get
shot up.
Now what I want to know is how to tell the difference. The
spasm was always easy since my massage therapist and I could
feel it. Varies between pea-size (have never gotten it to
break) and the size of a superball when totally hacked off.
Always caused me to limp. Also a lot of sharp, shooting
pains.
What I'm experiencing now is intermittent sharp, shooting
pains through the hip. Is this consistent with it being the
joint rather than a spasm? Is there a clear way to
distinguish between an arthritic pain and a spasm/trigger
point pain?
Thanks - Jan K

Hello everybody
Debra I visit also my ob/gyn and he told me the same that it is not a relation
between the athibiotics and your normal period; i asked that question to
himbecause I was having a lot of problems but he told me that is also because of
the birth problems that everything has to get normal inside and that i kept
loosing weigth and until I get to my weight I`ll be totaly perfect.And he also
told me taht I have to use some ovules (for 10 days)and 6 packages of hormones
to feel better because the anthibiotics can cause some imperfection in my inside
so I have to try it for at least 6 months more or less and I`ll be just
fine.Hope this answered you question or doubts.
Have a nice night
Hugs
Rocio

Hello everyone,
It took me some time and research, but I found out that Biaxin has an
immunomodulatory action:
"Clarithromycin has a considerable immunosuppressive effect on
synoviocytes by inhibiting costimulatory molecule expression, cytokine
production and antigen-specific T cell proliferation induced by
synoviocytes."
As was suggested by someone in the Group, Biaxin can be combined with
Minocin for best results.
I also believe in combining different Antibiotics, each having a
different mode of action and each being targeted specifically for
different bacterias. What one Antibiotic lacks, the other provides.
Pierre

Hello everyone,
I can't believe I made it through this trip without landing in the ER. I
prayed the whole time nothing would go wrong. When I got into Florida, it
was very hot, in the 90's most of the time. My trip on the airplane was
somewhat I had expected. While helping my son with his breakfast, a
lightening bolt of pain jabbed my lower jaw. It really caught my attention
and while burying my head into a pillow, trying to see what the next one
would do and at the same time comtemplating should I take some Morphine or
try to stick it out. Well, I didn't in the end and I did survive it, but it
was a letdown for me that I would have some trigeminal problems on the
aircraft.
Two days later, my right arm blew up like a balloon, something I hadn't seen
yet. My hand and wrist was twice the size of the other and my arm was
changing colors on me. I was due for a treatment and well I would see what
would happen. After three days after my IV, everything came back to normal.
PHEW! I went on my cruise after and well, being as allergic as I am, I
didn,t find this too easy. Having all this great food passed under my nose
well, I didn't quite hold out on everything. I took some antihistaminics
doubled up and a few other things and tried my taste buds on chicken(not
being one of the things that causes me problems lungwise). I still had some
symptoms and well had to do alot of things just to get back to normal. The
worst part is the odours that I am allergic too that are a little difficult
to stay clear of. A few times I found myself running out from either a show
or room or at the dinner table to my room to take some inhalants I need to
get me out of trouble. The waiters must of thought I was crazy , but anyhow,
I do what I have to do.
At one point during the cruise we go to a private island called Coco Cay.
This is like one big beach party, haven't been around one of those in a long
time. But, I soon became aquainted with the fumes of the open bar-b que on
which the chicken and ribs were frying. You never saw a person run so
quickly to get out of that area. I was gasping for air and felt pretty
terrified to tell you the truth that the ride to the boat was at least half
an hour. I was on my own to treat myself, out came the Bricanyl and grabbing
the oxygen tanks from the scuba equipment, and of course a few other
concoctions but What the worst part was to try to take care of myself
without letting any of my family members seeing this. My dad would have
probably had a heart attack. People were all kind of doing their own things
so I got through it but as soon as hubby came back from his deep sea dive, I
wanted to go back to the boat.
The rest of the cruise, this girl stayed out on deck lying out on a lounge
chair and breathe in the sea air.
Then now was my biggest hurdle to jump over. I went over to my brothers in
Orlando and of course the kids want to go see Mickey Mouse. The thought of
it was terrifying actually. But I wanted my kids to finally have some fun
after these past years of seeing all the docs and nurses and ambulances,
etc. Obviously, I had to step on my ego and take a wheelchair, but actually
it was fun after because we would be going straight into the attractions
since they don't make wheelchair people wait the 1 and a 1/2 hours they
others have to wait. Then at some points, I got up and the kids would sit in
the wheelchair, so the day went really well. The kids were just great, they
were so mesmerized by all of this they had nothing to squeel about.
Now, I am home and very happy to be back in my things, I have 900 emails to
go through but thats okay. I have my IV treatment 9:00 am sharp, back to the
old routines .
I had a great time and I had a chance to speak with Carol on the phone, I
really enjoyed talking with her after all these months on the net. I do hope
to do this more often, sure is great.
Okay, this is getting a bit long for some of you out there, just glad to be
back in this net family.
Big hugs to one and all,
Kathryn

Hello those on Zithromax,
Has anyone experienced diarrhea when taking this antibiotic? I have had
two doses and both times gotten diarrhea....I am taking the correct amount
of acidophillus that Dr. Franco gave me. Thanks1
Leslie

Group, I hope you can help me. I had a fusion at c1 & c2 last Oct.I was
given cortisone during surgery, recovered well and did very well for 4
weeks. Then I had a 4 hour surgery on my right foot [toes].
Five days later it was like my whole body fell apart. I couldn't get out
of bed without help and the pain was the worst I had had in 20 years
with RA-and I have never had a mild case. Last month my surgeon said the
fusion has failed and I am scheduled for another surgery next week. The
dr. said no more NSAIDS, MTX or prednisone for at least 2 months.
However they did say I would receive cortisone during surgery and that
it would be life threating without it. I was not given any cortisone
during foot surgery[ because I told them I didn't want it because I am
so afraid of taking it] and since then I have lost weight steadily{too
much], my muscles in my legs have shrunk and the pain in my joints and
muscles is almost unbearable. This is my question: is it possible that I
could have adrenal exhaustion? Also I forgot; since about Dec. I have
had an irregular heartbeat for the first time in my life. I kept
thinking it was because I wasn't taking any estrogen [I am 54] Finally
last week my dr. heard it and put me on a 24hr. heart monitor but the
results aren't in. I just don't know how I can possibly go through
another surgery now. I am a total wreck and very depressed. The surgeon
said that if the screws break before surgery that my head will have to
be fused to my neck and I would have no up and down movement of my head.
I just got a script today for Cortef and told the surgeon that my RA.dr.
said I can't be off of all meds or I would be bedridden. I'm sorry this
is so long-please help! p.s. He did say I could continue the
minocycline.
Helen

Anyone want to come chat? See Link below. Going on as we speak! 8:11 p.m.
Eastern time.
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html

While perusing the rheumatoid studies at the NIH site, I stumbled across one
interesting comment:
"Synovial tissue samples have been obtained from the entire cohort at the
initial visit of protocol 94-AR-0194. Studies of these biopsies have so far
demonstrated evidence for the presence of infectious agents in a proportion of
the samples, and have generated information regarding the cytokine profiles in
the early stages of synovitis. "
This was found at
http://clinicalstudies.info.nih.gov/cgi/wais/bold011999.pl?/u/protocols/clinical\
_studies/html/detail/A_98-AR-0150.html@rheumatoid
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

Denise I just read in prevention magazine that you shouldnt take all your large
dose of calcium at once but divide it up over a couple of meals. Evidently large
doses arent assimilated as well. I think you could try to dissolve your pill in
some milk or juice.
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

Susan wrote:
"I have a friend who recently began clindamycin IV's. Unfortunatley she
had a severe allergic reaction and broke out in a head to toe rash. Her
MD, Dr. Kemp, advised against doing clindamycin IV's again. My question:
Is there an alternative to clindamycin? She would like to do teh IV's
but possibly with another type of IV antibiotic"
I know that the NIH is doing a study with IV doxycycline. Perhaps you could see
if they know of anyone who might be doing this in private practice. You can
check out the web site at
http://clinicalstudies.info.nih.gov/cgi/wais/bold011999.pl?/u/protocols/clinical\
_studies/html/detail/A_95-AR-0012.html@doxycycline for more info on this.
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html

This is a poem that I wrote in 1994 while I working with a group of women who
were Struggling.
We turned that word into a positive (often did not feel like it though!)
I wanted to share it with (group). Because I re-read it the other day and I
thought of us, who are indeed struggling, but who at the same time are on a
threshold of hope through AP and the things that we are indeed learning and
sharing. I hope you do not mind my sharing this with you; it comes from the
bottom of my heart to you.
THE STRUGGLER
When all the days and nights come together and you think to yourself, there is
no hope, give
Yourself some slack. You are one person against a whole world of do nots,
should nots, and
you can't do that, but remember there are a lot of things you are doing, look at
those and
take heart, give yourself Hope.
When all the thoughts in your head are moving around and you think you cannot
take it anymore, give yourself slack and take a deep breath, give your Peace.
When all the people, places, and things are battling within yourself, give
yourself Love.
For just that moment we can take it, just this day we can adjust, and make it.
The unfairness, injustices, hatred, and violence probably will not stop in this
life, but we can
be one that can make the difference in our life and in the life of our kids.
It may seem small, it may seem hopeless, but one step, one breath, one "trying"
can give way
to a whole crop of what we have been planting, because apple seeds really do
reap apples, and pea
seeds really do reap peas.
There is planting, watering, and frustration and yes, sometimes anger, but then
there is the harvest.
I know what you are thinking, When is the harvest? ; sometimes it is every day
except we can't see
it because it does not look huge or very significant, but it is, it really is.
Planting and sowing, and
reaping, look for your season, your moment is NOW.
Written by: Martha Smith, St. Augustine, Fl. dedicated first to a group of
mothers/women
now to our group.

Hello all,
My mother has iritis and mild arthritis, problems with her
esophagus (feels like it's closing up on her when stressed out
and often wakes up gasping for air), an undiagnosed heart problem
and now her doctor said he can see a small mass on her lung. He
thought it was pneumonia and put her on Biaxin for a week, but
the mass didn't go away, so he is sending her to a lung
specialist. Well, I am extremely worried about the lung, because
has smoked all her life, so the thought of cancer comes to mind.
She is only 55. I'm trying not to let myself think about that too
much. I keep telling myself that she would be coughing alot if
she had lung cancer, but who knows. I'm wondering if this could
be a part of her auto-immune problems. Possible scleroderma?
I was wondering how those of you with lung involment were
diagnosed with the lung problem? Did it show up as a spot or mass
on an x-ray? Or did it just involve shortness of breath and
breathing problems? . She doesn't have any tight hard skin, but
she has terrible eczema on her hands and two large round dark
spots her legs that almost look like burn scars.
Any thoughts?
Thanks all,
Kyla

Hi group,
Janine here, Ethel asked for a full report!!
I'll give just a short run down on the meeting in Winnipeg:
Cathy(Fairylady) was well organized, had pamphlets on antibiotics, ect.!
It was a small turnout, however I feel we may have had success on
introducing a few people to the AP!!
One lady is already on antibiotics, through her own doctor. This lady has
obvious scleroderma, her hands and face showed tightening of the skin, she
also has had problems with her esophogus(sp) closing up on her( she has had
a few real scares!) Her doc told her that he was trying out antibiotics to
see if they would help her. She will be taking the IV information we gave
her (from Donna, in Ottawa's, Home Page!!). A Very good piece of info
Donna!!
There was also a gentleman , with RA, who has been very resistant of toxic
drugs(applause)!!
Another lady who suffers RA gainded some info to take to her doctor!
Cathy told her story of struggles(very informative), and I told mine...time
flew by and we answered questions and shared information!
All in all a very good first meeting!!
I hope to follow in Cathy's footsteps, and start a group here in Regina!
Cathy may be able to come and join us with her story! The more stories that
get to the public...The Better! So Keep sharing people!! We can SAVE
LIVES!!
Cathy made a nice dinner for my daughter and I, and the next day we met
Lianne(the skater lady).
It was a great trip, I'd do it again in a heartbeat!!
Oh yes!!...
I'm going back to work...I'm going back to work...I'm going back to work!!
Cool huh?
Hugs,
Janine

Dr. Chiu,
If a person is diabetic would they be able to be on the AP?
Thank you.
Denise

What is the recommended dosage for olive leaf? I have some and I've
been taking one/day.
Thanks
Denise

Hi group,
I had been taking plain Calcium 1000mg/day. I sent for Ca/mag.
Yikes! They are horse pills. Does anyone know of a good brand of a
size I can swallow. If these horse ones are split, it leaves rough
edges and I worry about swallowing something like that. I can feel the
rough edges going down.
Thanks.
Denise

Hi guys,
I am talking to someone who came as a newbie to a.s.a and her RD is about to up
her Methotrexate doseage to 28 mg which as far as I can tell from what she and
others are saying is a whopping dose. She is curious about the AP, was treated
for some sort of respiratory infection months ago with antibiotics and suffered
a tremendous flare/herx which lasted for months, apparently. I have referred her
to this site, but would appreciate a little input from anyone who has been on
mtx as to this situation. <LOL
heathens sometimes when I talk to these people, but cannot stand to see these
stories about RD's blasting away with these powerful and in my estimation, very
dangerous drugs and just keep quiet. She has had RA about 2 years I think she
said, and has had minimal pain and swelling, which happy circumstance she
attributes to her high pain threshold. She struck a chord with me as a
particularly brave and intelligent person and I would like to help her if I can.
Thanks in advance, LizG

Hey,
Has anyone heard of a therapy for restoring hearing loss from Meneire's
disease or other AD?
I found something new about micro electronic acupuncture but its hard to get
treatment for this.
Take care evrybody!
bryan and Julia
TX

Read an article in "Better Nutrition" magazine last night and wanted to share a
few points with you all:
"Olive leaves offer the one, true, natural and nontoxic way to eliminate
illnesses arising from viruses, bacteria, fungi, yeasts, protozoa, worms,
flukes, and other parasites. Ingredients in olive leaves work against those
specific microbes causing herpes, infections, skin diseases, candidiasis,
malaria, arthritis, heart trouble, flu, and even the common cold." ...........
"Oleuropin, the powerful germ killer in olive leaf extract, has been used as a
cure-all for thousands of years among those populations bordering the
Meditrerranean. ......Oleuropein is a phenolic compound and the source of
disease-resistant characteristics of the olive tree.....It strengthens the
body's immune system. It's the curative for malaria and other protozoan
diseases. It helps block the growth of viral diseases such as HIV, Epstein Barr,
Cytomegalovirus, genital herpes, shingles, cold sores and retorvirus. It helps
stop sore throat, sinusitis, rhinitis, bronchitis, and pneumonia. It reduces the
symptoms of Lyme Disease, chronic fatigue syndrome, yeast syndrome,
fibromyalgia, athelete's foot, and jock itch. In all Balkan countries plus
Russia, Turkey, Greece, and Italy, olive leaf extract is extensively employed as
a broad-spectrum germ killer. " by Morton Walker DPM , author of Nature's
Antibiotic: Olive Leaf Eatract.New York: Kensington Publishing 1997

Is anyone else taking bovine colostrum? If so, do you think it has
helped and how are you taking it (power, pills, both? how much, when??)
If anyone else is interested there is a web site
"http://www.bovinecolostrum.com", but be warned, my "propaganda
detector" was going off like crazy (and since both links under the
"where to get colostrum" heading lead you to mail-order sites carrying
the same brand of colostrum, I am mighty suspicious)
Thanks,
j.

I dont know if the Levequin I took that me so sick was a herx or flare from it
or what. It lasted longer than most tho and my hands are still bothering me. In
fact one finger looks swollen now which is very unusual for me. I usually have
no swelling and this is what caused a rheumatologist to say I didnt have RA even
tho I met all the other criteria. I also have that problem with the leg muscles
feeling stiff and achy when walking on the uphill. No amount of exersize ever
seems to help that. Off and on over years and here more frequently now, I get
trouble with my eyes hurting. They will feel like clinkers in them and sometimes
so painful I have to just lay down with cold washcloth over them all night long
and in morning will be ok again. Im wondering if this could be Sjogrens or if it
may be allergies? The last bad bout started when I was at someones house who was
smoking cigarettes. Also some time back when I first got my parrot and
cockatiels I had some bad eye pain and finally figured out it was from the
little chemical lice killers that were attached to their cages. Any input on
this from you guys who have Sjogrens and allergies?
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

All these diseases can be pretty progressive and especially the Scleroderma.
Seems most rheumies fall back on Fibro when they cant pinpoint something else.
There is a lot of speculation that FMS also can be caused by mycoplasmas and
antibiotics are helping some with that too. You will find some sites about FMS
and antibiotics and also guaifenesin, another med working for some, on the links
below.
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

From the latest prevention magazine

From the latest Prevention magazine

I have a friend who recently began clindamycin IV's. Unfortunatley she
had a severe allergic reaction and broke out in a head to toe rash. Her
MD, Dr. Kemp, advised against doing clindamycin IV's again. My question:
Is there an alternative to clindamycin? She would like to do teh IV's
but possibly with another type of IV antibiotic.
Many thanks!
Sue :-)
--
Susan S Estridge
E-Mail : sestridg@madison
Internet: Sue_Estridge@...
Phone : (704) 649-2411
FAX: (704) 649-2020

Sorry, I have a million questions. I've been home with RA for five
years, with no one to talk to about it, but with a million questions, so
I finally joined the Internet this week - I have no idea what I'm doing
half the time.
Has anyone else noticed that they can suddenly eat foods which
previously caused flares after starting Minocin? I'm still being good
and not doing sugar or caffeine or anything sinful, but I couldn't touch
any grains for five years and after a few months of Minocin I could.

How can you tell the difference between a drug reaction and a Herxheimer
reaction? It sounds like: if the RA is worse, then it's Herxheimer or
a flare; if the RA is better but something else is cropping up, then it
is a drug reaction. Sound right?

I think this should have been sent to this group instead of the chat
group.
Does anyone want to answer her?
jan perdue

Hi Folks,
I have a question that I can't seem to find the answer to in
writing anywhere. I know that without treatment, RA is a
progressive, crippling disease. From what the scleroderma
people say, it certainly sounds as though that is the case
there also. If you're just one of the run of the mill
spondyloarthrides, in my case undifferentiated, does this
mean I have now acquired a crippling diagnosis if I were to
simply let it progress on its own?
My original diagnosis was fibro, which never quite fit for
any number of reasons, among them that fibro is claimed to
be a non-progressive disorder and I seemed to be progressing
just fine, thank you very much. I ask about this because
although I've let my family in on the change in diagnosis
and the possibility of total remission on the AP (fibro
didn't appear to have a "cure"), I have NOT told them the
diagnosis is now progressive and crippling. In other words,
I've told folks the good news without ever quite letting on
that the diagnosis change potentially holds very bad news as
well. I guess it hadn't really dawned on me either 'til a
month or two ago.
Thanks - Jan K

Dear group,
This letter touched my heart - it came in response to Janene's story. I've
answered, but I wonder if some of you with scleroderma would write back
too?
Thanks, Chris.

HI all,
After a wonderful trip to CA and las Vegas ( COLD and Rainy but a nice
trip) I have returned to the south to 80 degree days. Boy, I never dreamed
CA could get so cold!
During the physical with Dr. Franco, he asked me if I could touch my
toes. Since this is one of my better talents, with all of the gusto I could
muster ( and a lack of grace) I immediately put my hands to the floor and
to everyone's surprise, the paper gown I was wearing fell completely off.
Here I was flashing Dr. Franco!!! What a first meeting...
So ladies... don't be too quick when reaching for those toes!
Everything else was wonderful and I really feel good about the visit.
Leslie

Hi, I am searching for local physicians and/or support groups in the Vancouver,
BC Canada area.
My mother, Maureen, who has had RA for 20 years, would like to begin the
testing and see if she could benefit from this therapy. If you know of any
Canadain contacts who may know Physicians/support groups in our area, we
would be glad to hear from you.
Thanks for your help on this and for this forum...Stephen
PS, Those nutritional requirements (link on main rheumatic.org page) are very
stringent,
and seem to me to be somewhat onerous, and is causing my mother some pause
in beginning the process of starting this therapy. Are there any thoughts
or experiences around this. How important is the nutritional part as
reccommended? Thanks again.

Hi Group,
I seem to be getting two copies of everyones mail to the group. I
unsubscribed twice, re-subscribed and am still getting two of each.
Any suggestions?
Love and hugs,
Jude.

Doc Chiu, do you mean old as in outdated or old as in the earlier types of
tetracyclines?
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

When my RA is flaring or herxing I alternate between a slighly high temperature
and down to as low as 95. When its really low I feel much the same as with a
fever and real weak.
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,
Forgive me if this is just a tad off topic, but I really need
some advice.
After many years of suffering from hormonal problems, I was
finally diagnosed with "late onset congenital adrenal
hyperplasia", a disorder where the body fails to produce enough
cortisol (the "adrenaline" hormone) due to a partial adrenal
gland enzyme deficiency. Sounds pretty complicated, I know. All
of this in addition to arthritis...lucky me. Sorry, just feeling
a little sorry for myself. Unfortunately, antibiotics can't help
with this problem. *sigh*
The reason I'm telling you this, is because the treatment for
this condition is to replace the cortisol my body isn't making,
and yes, that means lifelong administration of low-dose
hydrocortisone, which is a drug I'm sure many of you were very
familiar with in the past. I never had to take cortisone for my
arthritis before, so I have no idea what to expect from this
drug. I am scared out of my mind, after hearing about bone loss,
joint destruction, suseptability to infections, cataracts,
glaucoma..you name it, being caused by taking oral steroids for
their arthritis.
I can never understand how such a drug can be so damaging to the
body, when it supposedly is identical to what my body is missing.
Well, that is what my doctor tells me. He said that very low
doses, such as 5mg. hydrocortisone a day will not cause any
problems. He said hydrocortisone is the best steroid to be on,
because it is almost identical to what the body naturally makes.
But it's still synthetic. So I am having trouble believing him. I
keep telling myself that the reason steroids are harmful to the
average population, is because they are given in larger doses,
but that it will be okay for me, because I don't make enough of
it to begin with. Right? I wish I knew the answer.
It's really disappointing to have discovered AP, so that I would
never have to take steroids, only to find out that I have to take
steroids for another condition.
Any thoughts on this? Do any of you think the risks outweigh the
benefits by taking hydrocortisone?
Thanks a bunch,
Kyla

Grp:
I am having a severe flare everywhere. I have been asking your advice about
shoulders- which are a little better since the xylocaine injections.
Yesterday and this morning I have severe stiffness and a big swelling on
outside of my ankle. Can not open mouth or swallow . I can not straighten
out legs.
I stopped embrel 2 weeks ago as it had really fizzled. I planned to restart
it in 3 weeks to try to get the great results when first starting it in Nov.
I am so stiff ,even in calves and lower arms- that I may have to start MTX
again as a emergency measure.
Can you get an ankle drained? Can you get a shot right in the middle of
swelling? The swelling is a little above ankle bone.
How can I tell if I have bakers cyst behind the knee? And would that make
your calves stiff and painful?
I just had 80mg of depo-medrol 5 weeks ago and hate to go that route again
but I can't MOVE.
Thanks,
Carol*

Hello all,
I find myself in quite a quandary and thought you all might be able to
help.
I have been going through a bit of a flare the last 3 weeks. It's really
not so bad (not like the christmas flare), but any flare is not a whole
lotta fun! I was finding it strange that I was set back so much since I
had had over 2 months without flaring and began trying to see if I could
determine what might be aggravating the RA. Well I think I found it.
It's the Zithromax.
Let me back up a minute.
When I switched doctors at the end of the year, Dr. Kempf requested I
stop taking zithromax (he didn't like the idea of me taking 2
antibiotics, and since he doesn't believe the minocycline works by
killing bacteria but by enzyme inhibition, this attitude under this
paradigm makes sense). So I stopped. A week or so later my flare stopped
and I had the absolute best 2 months I've had in a year.
In spite of all this, my research into this disease and how to treat it
never stopped. Recently I felt that I had come across enough data that
indicated to me that starting the zithromax again would be a good idea,
that it may help speed the destruction of the critters thus speeding
recovery. So about 3 weeks ago I started. 24 hours after taking the
first dose (500mg 2 days a week on the days I don't take minocycline) I
went into a flare. I noticed that the flare was subsiding and then the
2nd dose was taken and this time I had a big flare. Again I start
getting better, then I take another dose and it flares back up again. Of
course I wasn't aware that the zithromax was doing this right away, but
once I caught on, sure enough, 24 hours after I take zitromax I flare
and then start getting better until I take it again. I have now skipped
my last dose and I am back to where I was 3 weeks ago. Feeling pretty
damn good, little pain, lots of energy, etc....
Sounds kind of like I'm herxing from the zithro doesn't it? So my
problem is, what do I do?? Do you think the zithromax is causing a
herxheimer or is it just causing a flare. If it's causing a herx, it
seems that I really should take this stuff, because it's doing it's job
killing off the critters. But should I slow it down? Take it once a week
or twice a week at a reduced dosage?! Or is it just another
"environmental insult" that is doing nothing but flaring me up?
Any help or ideas?! I don't mind dealing with the flare if that's what's
best, the pain isn't that bad. But I don't want to go through it if it
will do no good.
Any help is appreciated!
Thanks,
j.

On the news last night in Toronto, there was a report about a 2 year old
whose parents were told by Calgary doctors that he had no chance to live due
to a rare blockage in the vein from his liver to his heart. His mother
brought him to Sick Children's Hospital in Toronto and began inundating his
doctors with research from the Internet into the problem. With the help of
this information and their skills, the doctors were able to develop a
strategy that led to the first operation of its kind to open up the
vein--and it was a success!
For those doctors who say not to trust what you find on the Internet, this
example proves that when the information is researched and evaluated
carefully, and combined with sound medical knowledge, it can help miracles
to happen. And perhaps for us too!
Linda

To jani and all,
Thanks for your messages, they cheers me up no end. Knoing thatwe all have
the same kind of
problems around the world and sharing the possible solutions and causes.
We migth get medecine to move a bit faster,reserch to lock into
mycoplasma(in europe I have found very litle or no reference to it on the
net).
And make the world a better place.All thanks to internet.Information is
avalable.
Doctor,espesially spescialist hate it,thy cant play God eanny more,yook the
spelling!!!
My beast to all and have a cheerfull day

I'm new to the group, and new to Minocin. My name is Deb. I wonder if anyone
else has run into kidney problems from the Minocin?
I started Minocin in November at 200mg/day, but cut it down to 100mg/day when I
developed back pain. I did fine on 100mg/day as long as I drank lots of water.
My doctor (Trentham) asked me to try the 200mg/day dose again, worried that the
lower dose wouldn't bring the RA under control. After just one day at 200mg I
ended up in the e.r. with kidney pain. I have been off the Minocin for six
weeks. All kidney function tests seem normal, and my doctor says he's never
heard of anyone having kidney problems from Minocin (and he oughtta know), but I
saw a web page which listed side effects from Minocycline, it included
"interstitial nephritis". I'm giving Minocin another try but I'm worried.
And second burning question: Can RA cause a low body temperature? McPherson
Brown's book talks about running a degree high, but nothing about a low body
temperature.
Thanks

HI guys,
I recieved this other day.
Leslie

This may be in Dr Browns book if I reread it but am wondering why it takes so
long to kill mycoplasmas and why we most likely need to always take the
antibiotics?
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

For an article on mycoplasma and auto-immune diseases see:
www.geocities.com/HotSprings/6028/mycopl.htm

Temporarily unsubscribing.

Dear Group,
I have to unsubscribe temporarily because of two large, fast-paced
jobs I'm beginning. However, I'll be back as soon as I find some breathing
space.
Linda Mazumdar

Yoly, I was glad to get your message about the appt. with Dr. Grimes. He is an
excellent doctor, explains everything, is not surgery happy, but is
well-informed, treats each patient with respect, and knows that everyone is a
unique individual with different needs and body! You will be pleased with his
care. Tell him that Martha Smith who receives the hyalgen injections told you.
I just want him to know that we his patients do share with others how pleassed
we are. How are you today? My lungs are improving, still have some
bronchitis/little asthma. RA kicked up a little bit with all of thease
antibiotics, uh?? working right! Martha from St. Augustine.

<A HREF="http://www.cdc.gov/nchstp/hiv_aids/pubs/faq/faq5a.htm"
Are these stories true? - (FAQs) - CDC-NCHSTP-Divisions of HIV/AIDS Prevention
</A

Well, here I am with another symptom/ailment. This has happened several times
before, maybe two or three times a year. In the past, I had it checked out with
with a dentist and an ENT, no diagnosis. I have made an appt with an excellent
ENT Dr. Bruce Witten in May (earliest appt I could get). It is one side,under
the ear, well, really where one would have mumps. It has me a little worried.
Once or twice you just right it off to sinus infection which it might be, but
now I am concerned. It hurts, you can actually feel it swelling. With my sinus
infections, I do have swollen sinus, no sneezing or runny nose, etc. So I do not
know. I am on antibiotics for respiratory problems, etc. but this has me
stumped. Anyone have any symptoms like these? Thanks for your input. Also
THANKS D. King for your prose concerning "Choose your Day" Excellent. Until
next time, Martha from St. Augustine

Ethel,
Thanks for the reply about the ASO titer. I haven't got through all the test
results we got on Skip to see if that one was run. If it wasn't we have another
appointment a week from today and I will be sure to ask about it.
Denny

Here's an interesting commentary on what will surely be a grand battle. This
should wake Sarah up down there in Arkansas!
http://www.expressnews.com/pantheon/editorial/ivins/08ed4mi4.shtml
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html

I havae recently upgraded my computer courtesty of the tax return and wanted to
know if people are still getting on line every day to "chat". If so, could
someone please post the times in advance for this saturday. I have four soccor
games to watch, but really want to try this out.
Thanks
Catherine

Has anyone with RA who has taken curcumin experienced any side-effects,
especially extreme fatigue or weakness that were not present before taking
the curcumin?
Linda

Dear Group, would those that responed to Pat about your experiences with
bosweilla, please e-mail me. I am just going to start taking it.
I tried to find something about it at Dr. Martin's site on the web page and
there was no mention of bosweilla. Does she have another web address?
CAROL/PINEY/CANADA