Auto-immune diseases

Hello all,
Is it realistic to expect one to see quicker improvement and/or
complete recovery/remission from arthritis when antibiotic
therapy is started in the very beginning stages of the disease or
in very mild cases? Or am I just a wishful thinker? :) I'm not
sure if there is much written about the differences and
effectiveness of AP between those with mild and those with severe
disease.
Does anyone here think that it is possible to actually stop
antibiotics after a period of time and expect complete recovery?
Does the bacteria that we believe causes arthritis eventually die
off?
On a seperate note...
When I was a kid, I can remember having terrible tonsilitis
infections. I had them *atleast* once a year. It seems that my
tonsils were always giving me a problem. The docs never wanted to
take them out, so I guess that didn't help. To this day, doctors
can always tell I had alot of tonsilitis infections, because they
are so large. They also tend to get spots on them whenever I get
a cold or flu nowadays. But really, does anyone think that there
could be a link between my childhood infections and the arthritis
that I developed back then?
I'm sorry for all of the questions. Can't tell I'm a newbie, eh?
Hehe!
Hope you are all having a wonderful weekend so far. :)
Kyla MacKenzie
Toronto, Canada

Agreeing with Elaine's assessment of the value of this group. Some of us
delete electronic cards so want to repeat the message I sent;
In this group everybody's a work in progress.....let's forgive the
splatters along the way.
Our group is like MUSIC....some HIGH notes, some LOW notes, but always a
wonderful song.
Let's all pack up what we've learned this past week and Move On.
Love and hugs, deejay

Has anyone experienced edema of the lower extremeties that can be
related to the use of Minocycline - specifically below the knees?
--
Regards,
Geoff Crenshaw, ACC

http://www.geocities.com/SoHo/Gallery/6412/supportgroup3.htm
its on the botttom of the page.
--
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

Therapeutic effects of oral NADH on the symptoms of patients with chronic
fatigue syndrome.

Hi group,
I'm going to New York on holiday for 14 days, flying out from Copenhagen
27/3 and returning 10/4. My first trip to the States!!
I would love to meet another person on AP - live! Is there any of you
guys in the N.Y. area, who would like to meet me and talk about AP?
Please e-mail asap if possible
Regards Sarah, Denmark
30 years, RA 12 years
AP 7 months
Get Your Private, Free Email at http://www.hotmail.com

LIZ G: Tomorrow I`lltalk to my father his an MD and both parents have Tyroid
problems so I`ll investigates some info about it and I write you tomorrow.Hugs
Rocio

Hi,yes,Rocio here...
ETHEL: I have another doubts here,I have helicobater and I treated with a
special antibiotic (heliton,I don`t know the generic name In fact my gastro told
me it was a new antibiotic for the helicobacter)about 3 month ago and in the
last test I made It`s says that I was the same 60% up and to be normal you have
to be on 0.So thats why I mention you about my gastritis,so tell me do I have
to stop the minocin or I continue???I`m the first week (second pill 50mgrs each
as Chris told me)to start with low dose.
Could you explain what do you mean about leaky gut,what`s that????
And my vesicle,(it`s near the lever and they work together but if they take it
away it doesn`t matter at all,in fact the vesicle produces some biles solutions;
anyway maybe we can ask Dr.Chui help,he can explain more clear to us)I had a lot
of pain since 1 year ago more or less, but I didn`t know it was the vesicle
until I made an ultrasonic test(is it the correct name?)about 4 months ago and
they told me I have a little stone there ( I don`t know if you know what I mean
because I don`t know the exact medical word I`m not so familiar with that kind
of words in english sorry about it;wish you understand me)And one big cyst in
the left ovary and that both things were surgical,I was going to do it then I
got flu and bla,bla,bla, my father was in a big surgery (colostomy) on
december,my brother, his surgery and I`m waiting a little peace so I can do it
right away.
That`s why I asked all this doubts could you help me clear up my mind?????Thanks
a lot for your advise and help.
Warms hugs to you too.
Rocio

I have been making inquiries about recent thyroid tests I had done, and have
been told that both glucocorticoids and non-steroidal anti-inflammatories can
impact thyroid metabolism. I have not worked out the details on any of these
interactions yet, but am looking into it and will post any relevant info I come
across. Those experiencing thyroid symptoms might want to bring this up with
their doctors. Topics you may want to read up on would be the influence of
steroids on TSH levels and both steroids and nsaids in reference to thyroid
binding proteins. LizG

Has anyone flared after starting thyroid medicine. The Dr gave me
levoxyl 0.075mg to see if it would reduce the size of my thyroid, i have
a nodular goiter, anyway I went into a mild flare after taking it. It
started about 4 hours after the first pill with my fingers and wrist.
This morning my knee, ankle, and big toes were involved. I'm continuing
the medicine for now to see if it goes away. May not even be related,
but I was doing so well.
Julie

Hello all,
I just want to thank all of you for your wonderful welcomes and
words of hope and encouragement! I will definately be responding
to each of your emails. I receieved so many! I'm going to be a
busy woman for the next couple of days! :)
Just a quick question to run by you all. I have heard that
antibiotics reduce the effectiveness of birth control pills. I
have to be on the Pill, because of a severe hormonal imbalance.
If I don't get the proper doses, I experience menopausal -like
symptoms and suffer miserably. I also use it for the birth
control, of course!
Does anyone know how much it reduces hormonal effectiveness? I
once heard by about 50%, but I'm not sure if the dose of the
antibiotics changes this.
Any info would be greatly appreciated!
So happy to be a part of this list. :)
Kyla MacKenzie
Toronto, Canada

Is there a specific test I would need to have to get an exact level on ASO
titre? I got this done recently and it came back Negative but if I understand
Chris and my lab report correctly, this could be anything up to 200. I am
asking because I have often had chronic sinusitis, and when being treated for
this awhile ago with amoxicillin, I did get a great improvement in RA symptoms
and better response to the tetracycline afterwards, I feel. I am wondering if
there is any low level activity going on here my test did not reveal. LizG

I am talking to a woman about the AP who thinks her husband's RA might have been
caused/triggered by exposure to chemicals, gasses or metals on his job. I have
heard several of you refer to this kind of exposure. I am thinking of Dr.
Brown's characterization of RA as a state of allergic reaction to mycoplasma
infection and the heightened sensitivity to other allergens, meds, etc that can
arise in conjunction to this; also thinking about cfs and connections made
between it's onset and chemicals, and the subsequent sensitivities that arise.
Any one here with experiences related to this I would appreciate your input.
Please reply to me directly unless you are certain your response pertains to all
here. I will post any good info I dig up on this later if it seems to pertinent
to all. LizG

test
--

Group, This is not related to our diseases,but seeing as a lot of you use
AOL. I heard on the radio today on the CN news that they had arrested a
young man who had hacked into the AOL site and changed some of their
programs. If you are having any trouble with you computer, it might be a
good idea to check with your AOL server. It may not apply to anyone, but
they did not say what programs, etc. that he had changed. CAROL/PINEY/CANADA

I'm sitting here at my computer (western Washington State) and we have an
unusual bright sunny day bursting upon us. The sun is shining warmly on my
back as I sit here. I am finished reading all the mail, but it feels so
good I'm thinking of anything to keep me at the computer a bit
longer.....even though the housework beckons. I'm thinking this would be a
good day for ALL of us...even though some of you aren't experiencing a nice
spring day....
to take a few seconds of time and a bit of our energy to mend some fences.
Some of our group are hurting because of this last flare. Let's get
supportive...that's what we're here for.
I think it takes less energy to send a positive message than a negative
one, but it generates much better feelings both for the reader as well as
the sender. I picture an old delapidated
cabin with the porch just about to fall down. Picture someone taking some
strong timbers to prop it back up. Let's be those timbers and prop up the
leanin' side of our group.
You know who.....send them a message of encouragement and support TODAY. I
know some of you probably have already done this, if so Thanks. Rest of
you.......GET BUSY.
Thanks and I love you all. Judy (deeejay)

Milk Thistle:
Containing silymarin, a potent antioxidant with hepatoprotective properties,
this herb has a good safety profile.

Anyone care to respond????
jan perdue

In a message dated 3/19/99 12:43:29 AM Eastern Standard Time,
anon_emouse@... writes:
<< Also to keep in mind, that there have been no reported cases of lupus
induced in RA patients treated with Minocycline.
Anyone want to be the first <g
Well, Dr. Chiu, I may be one :-( but my case is a little varied. I have
Dermatomyositis, not RA, and last time I went to dermatology they said that my
rash looks like it's starting to have lupus symptoms (between the knuckles
rather than on the knuckles like DM). I'm wondering what else maybe is a
lupus-like symptom? I take Minocin daily at 100 mg, and take and additional
100 mg MWF. The MWF only dose did not work for me, and I was seriously going
down hill. This daily dose keeps me feeling good and getting a little better
every week.
Maria
Dermatomyositis 2 1/3 years, AP 4 months

Sorry that I got a bit excited and sorry if I offended anyone by speaking
out. I realized at the time that I was attacking the individual and
realized that was exactly what I was accusing him of, but felt in this one
particular case that it was warranted because he had chosen to take it into
a public forum. I apologize for upsetting anyone. It takes a whole lot to
push my hot buttons - I will now take my own "chill pill" , drink some green
tea, guzzle lots of water and get rid of these anger toxins that are
presently swimming around at a faster rate than they should be.
And thanks Ray for posting the information on sulfasalazine. I will include
some of that in my next note to Dr. Siegel. I think I will send Dr. Siegel
my copy of the Arthritis Breakthrough - at least maybe it will be a start.
I understand Joe's frustration and it frustrates me as well. Perhaps Dr.
Siegel is correct and metho is not an immune suppressing agent at the levels
given to RA patients, but who wants some of the side effects? For those of
you who have had side effects from the drugs he is suggesting, I would
particularly like to hear from you - if you want to email me privately and
not clog up the list, that would be fine (or if you think sharing your
experiences would benefit the list, then by all means send it to the list)
I don't think Dr. Siegel and many rheumatologists understand our fear of
these substances. Perhaps some living,breathing examples of the problems
associated with these drugs might make him understand the reluctance of
people like Joe and myself and all the rest of you to going down that road.
I personally haven't taken any of these drugs so I can't relate to any side
effects, that's where I need your help.
Thanks,
Mark
RA 4/98 A/P 7/98
Mino (100mg/2x/daily) Lodiine 400mg/3x/day
http://members.tripod.com/~Mark_Holmes
RA Chat: http://members.tripod.com/~Mark_Holmes/RA/ra.html
mholmes@... ICQ # 18123139

Hello again!
Apparently a shortened version of this was on Paul Harvey yesterday...
My grandparents were married for over half a century, and played their
own special game from the time they had met each other. The goal of
their game was to write the word "shmily" in a surprise place for the
other to find. They took turns leaving "shmily" around the house, and
as
soon as one of them discovered it, it was their turn to hide it once
more.
They dragged "shmily" with their fingers through the sugar and flour
containers to await whoever was preparing the next meal. They smeared
it
in the dew on the windows overlooking the patio where my grandma always
fed us warm, homemade pudding with blue food coloring. "Shmily" was
written in the steam left on the mirror after a hot shower, where it
would reappear bath after bath. At one point, my grandmother even
unrolled an entire roll of toilet paper to leave "shmily" on the very
last sheet.
There was no end to the places "shmily" would pop up. Little notes with
"shmily" scribbled hurriedly were found on dashboards and car seats, or
taped to steering wheels. The notes were stuffed inside shoes and left
under pillows. "Shmily" was written in the dust upon the mantel and
traced in the ashes of the fireplace. This mysterious word was as much
a
part of my grandparents' house as the furniture.
It took me a long time before I was able to fully appreciate my
grandparents' game. Skepticism has kept me from believing in true
love-one that is pure and enduring. However, I never doubted my
grandparents' relationship. They had love down pat. It was more than
their flirtatious little games; it was a way of life. Their
relationship
was based on a devotion and passionate affection which not everyone is
lucky experience.
Grandma and Grandpa held hands every chance they could. They stole
kisses as they bumped into each other in their tiny kitchen. They
finished each other's sentences and shared the daily crossword puzzle
and word jumble. My grandma whispered to me about how cute my grandpa
was, how handsome and old he had grown to be. She claimed that she
really knew "how to pick 'em." Before every meal they bowed their heads
and gave thanks, marveling at their blessings: a wonderful family, good
fortune, and each other.
But there was a dark cloud in my grandparents' life: my grandmother had
breast cancer. The disease had first appeared ten years earlier. As
always, Grandpa was with her every step of the way. He comforted her in
their yellow room, painted that way so that she could always be
surrounded by sunshine, even when she was too sick to go outside.
Now the cancer was again attacking her body. With the help of a cane
and
my grandfather's steady hand, they went to church every morning. But my
grandmother grew steadily weaker until, finally, she could not leave
the
house anymore. For a while, Grandpa would go to church alone, praying
to
God to watch over his wife. Then one day, what we all dreaded finally
happened. Grandma was gone.
"Shmily." It was scrawled in yellow on the pink ribbons of my
grandmother's funeral bouquet. As the crowd thinned and the last
mourners turned to leave, my aunts, uncles, cousins and other family
members came forward and gathered around Grandma one last time. Grandpa
stepped up to my grandmother's casket and, taking a shaky breath, he
began to sing to her. Through his tears and grief, the song came, a
deep
and throaty lullaby.
Shaking with my own sorrow, I will never forget that moment. For I knew
that, although I couldn't begin to fathom the depth of their love,
had been privileged to witness its unmatched beauty.
S-h-m-i-l-y: See How Much I Love You.
Thank you, Grandma and Grandpa, for letting me see.

Hello all!
My name is Kyla and live in Toronto, Ontario, Canada. I just
joined your email list as I am very interested in finding out
about antibiotic therapy for arthritis. I truly believe it may be
the cure for auto-immune disease. I remember a couple of years
back when the big news broke about an "arthritis cure". They
believed it was caused by a bacteria and that antibiotics was the
answer. Then all of a sudden, you didn't hear another word! I
thought that was very odd. Too much money being made off
tradtional arthritis drugs? Perhaps many rheumatologists were
scared they would no longer have a job? Who knows.
I was diagnosed with juvenile rheumatoid arthritis when I was 9.
It was a fairly mild case that went into permanent remission by
the age of 12. I believe I was misdiagnosed, as I had mild
psoriasis on my thumbs and scalp along with the joint pain in my
knees and elbows. I also had terrible heel pain and swelling,
typical of anklosing spondylitis. So I believe I had either
psoriatic arthritis or anklosing spondylitis. They never did find
a positive rheumatoid factor or ANA, so I think they just had to
call it something. My mother has an eye disease called iritis,
which is very common in both anklosing spondylitis and psoriatic
arthritis. I am very worried that I may end up getting it too.
After seeing what she has gone through, it is very distressing.
Anyways! I continued to have very minor symptoms up until the age
of 20. Dull back pain, plantar facisitis, where it hurt to put
pressure on my right heel in the morning. Minor psoriasis on my
thumbs.
I am now 25 and recently had a flare, where my hands and feet
became very painful and swelled up. My knees and ankles hurt
also. I've also had terrible chest pain (costochondritis) for a
year now. Doctors think it was a drug reaction, as I had recently
started taking a drug for a hormonal condition, and had terrible
welts and hives all over my body with it. Perhaps it was, but I
fear it may have been a return of arthritis. I am terribly scared
and worried sick. It made me start thinking about what I was
going to do if I found out it was back. I can't even take aspirin
or anti-inflammatories because I am allergic to them. And the
thought of taking steroids or those other serious arthritis drugs
had me feeling very hopeless and confused. I know they just cause
more problems in the long run.
So, I got to thinking about other options. Then antibiotics
popped into my head! So I did a search on arthritis and
antibiotics, and here I am. I am determined to find out as much
as possible on antibiotic therapy, so that I can treat my
symptoms before they get much worse. Perhaps even prevent iritis
from ever developing, because I would be treating the arthritis
at the source!
If anyone in Ontario, Canada knows of a rheumatologist that
supports and encourages antibiotic therapy, I would love to hear
from you! I have a feeling most have a problem with it.
I am looking so forward to communicating and sharing hope and
experiences with you all. I truly hope that I will not only be
able to help myself by learning more, but also help my mother. I
would love to see her healthy and happy again.
Any advice and information would be greatly appreciated!
Sincerely,
Kyla MacKenzie
celticfox@...

Hi group:
ETHEL: big question I have gastritis and some problems in my vesicle did this
interfere in the AT???I didn`t think about this before sorry if I ask
know.Thanks.
MICHAEL: I`ll investigate about the price in here (Mexico) maybe is cheaper than
in the states.tomorrow I write you that info.
Have a pleasent night everyone.Rocio

Bob wrote:
"I put a block on e-mail thru rheumatic@onelist.com from Briarwood,
LizG,ORCOM, Cookey and LvLaboradorios. This has made the volume and content
acceptable.. I agree with John, and Jan Kristen's remarks were right on!
Bob RA 15 yrs, AP 20 mo."
Bob, I'm sorry, but you're way off base here. If you don't like what they
post, then you should address them privately that you don't like it. You
have no business humiliating anyone publicly. You sound like a spoiled
brat - you have to have it your way or no way at all. I don't want to start
a war, but this pisses me off to no end. Why don't you just get the Digest
form of the list, then you can scroll right on by any comments you don't
like? I can't say I've ever seen you make considerable contributions to
this list, so what right do you have to complain about these posts? I hope
you feel good now that you have hurt these people's feelings. I know I hurt
for these people when I read your crass remark. Please add me to your list.
I'm sure you will as this post does not contain important information that
will cure you. (except maybe your attitude, but I won't hold my breath).
There should never be a direct attack on another person in an email group -
that should get you banned from the list.
Mark
We don't need this here - period.

Sorry if I sounded like a jerk. The volume is just so overwhelming
sometimes.
It is just amazing to me that if you have psoriasis you can get the AP but
if you have Arthritis no doctor wants to look at you. Marina, has called
almost all of the doctors on the list that was supplied and one looks like
he may do the therapy. The doctor at Mt. Sinai hospital in Toronto is the
same doctor that someone mentioned in one of their messages as being
against the AP. He was the same one speaking at the conference in Toronto.
Marina talked to him and he said he would see her only if she was referred
by a Rhemy not an MD. Marina seems to have both Arthritis and FM. The
Arthritis seems to be turning into more RA. It seems as if you people think
that RA and FM are mutually exclusive. Am I wrong in thinking this or is
that the general consensus here.
Thanks and again I am sorry if I pissed anyone off.
James and Marina Pye here in Toronto.

Dear group,
Gordon is not in our group yet.
Chris.

Yes it`s me again...BOB I`m not so familiar with mail or internet so can you
explain what do you mean about your mail??????????????thanks Rocio

Hello EVERYONE:
ETHEL: hi thanks for the info and I will try to convince my friend,I`ll see her
on the weekend.
And what do you think about my country? if you like it maybe you can come for
vacation sometime not for therapy and I`l be please to make the roll of your
tourist guide.Hugs Rocio

Could someone whose brain isnt fuzzy please explain this article for me. The
way I read it its not good to have too much omega 6 as it enhances the
action of cox 2 thereby promoting inflammation. Hoever the title of the
article and first paragraph seem to contradict this. Hope someone else can
sort it out. Also what do the terms in vivo and in vitro mean?
Thanks
Barbara

Hi,
I take two PB 8 capsules/day. These are what I started with. It
has worked well for my GI system. I have yeast in the folds of my skin
because of prednisone. I switched to the refrigerated powdered kind
which resulted in constipation as long as I was on it. I, also, take L.
salivarius and pau d'arco(antifungal). Still have the yeast though.
Denise
NC

Is clarithromycin related to azithromycin? Does anyone know how much it
costs per pill? Has anyone on this list taken it as a part of the AP?
---
Michael

I recently had lab done and, as if collecting the fecal samples were not
enough for one person to go through, I have a bad, very bad candidas
problem. My doctor has prescribed Nizoral for me but I've just read
(DR. Weil) that Nizoral is bad for the liver. Anyone taken this drug?
Any problems?
Chris or Ethyl, do either of you know much about this drug?
Please help, I'm nervous to take any drugs that might have long term
effects? Not that the yeast won't have that too............
Thanks,
Cathy
RA 2 years, 2 months
Get Your Private, Free Email at http://www.hotmail.com
Get Your Private, Free Email at http://www.hotmail.com

For your information: A new on-line drugstore opened today on the Net.
You can check it out at http://www.planetrx.com/product/rx/pharmacy.html
Mark
RA 4/98 A/P 7/98
Mino (100mg/2x/daily)
http://members.tripod.com/~Mark_Holmes
RA Chat: http://members.tripod.com/~Mark_Holmes/RA/ra.html
mholmes@... ICQ # 18123139

Please believe that I have not been offended by anyone. Just trying to cut thru
the chaff. Bob

I put a block on e-mail thru rheumatic@onelist.com from Briarwood, LizG,ORCOM,
Cookey and LvLaboradorios. This has made the volume and content acceptable.. I
agree with John, and Jan Kristen's remarks were right on! Bob RA 15 yrs,
AP 20 mo.

In the same magazine, LET'S LIVE, I found another interesting article on
copper overload. One of he risk factors is excessive stress or insufficient
adrenal gland function. Stress dramatically decreases zinc levels,and zinc
and copper must balance each other, ideally in a ratio of 8:1. High levels
of copper are often not diagnosed by doctors.
Here are some common symptoms:
--a tired body and overactive mind
--anxiety
--PMS
--migraines
--cravings for high copper foods such as chocolates, nots and avocadoes
--depression, frequent colds, flu, viruses
--easy or frequent bruising, specifically capillary fragility.
Here is a summary of risk factors:
--slow metabolism
--excessive stress
--high estrgen levels
--birth-control pill or IUD
--silver amalgam or gold alloy dental fillings
--zinc deficiency
--vegetarian diet
Treatment involves: 1. zinc rich, low copper diet
2. stress management
3. supplements of manganese,, zinc and
vitamins A, C, B3, B5, B6.
Linda

This is for the higher dose (daily). Something to keep in mind. This is one of
the reasons I stick to the 3 days a week.
This was in Dr. Mercola's newsletter:
========================
MINOCYCLINE USE FOR ACNE LINKED TO LUPUS-LIKE SYNDROME
Current use of minocycline to treat acne substantially increases the risk of
lupus-like syndrome, according to results of a nested, case-control study
published last week. Investigators identified 29 patients with lupus-like
syndrome out of 27,688 acne patients between the ages of 15 and 29. Current
single use of minocycline was associated with an 8.5-fold...increased risk of
developing lupus-like syndrome compared with nonusers and past users of
tetracyclines combined. Current users of doxycycline, oxytetracycline or
tetracycline had a 1.7-fold increased risk of developing lupus-like syndrome.
The risk was close to non-use (relative risk 1.3) with past exposure to
tetracyclines.
COMMENT: If you have been reading the newsletter for some time, you should know
that Chlamydia has been reported to be a causal factor for heart disease and
other chronic diseases. I happen to use quite a bit of Minocin for patients with
rheumatoid arthritis as it is believed that mycoplasma is a factor in the cause
of this illness. However, I use it at three pills per week rather than the 14
that is typically prescribed. I have used Minocin for thousands of patients and
at this dose I do not recall observing this side effect. However, it clearly is
a possibility at higher doses.

I just bought a magazine called LET'S LIVE with some really interesting
articles on a variety of topics. The one that caught my eye was on the
latest research on osteoporosis. "Chronic inflammatory conditions like
rheumatoid arthritis are related to a higher risk of osteoporosis, and even
minor malfunctions in the immune system can affect bones by increasing the
activity of cells that break down bone."
I wish I had a scanner to send the whole article, but here is a list of the
supplements recommended as their "strong bone solution" (each is to be taken
twice a day):
--Vitamin D, 200 IU
--Vitamin E, 200 IU
--Quercitin, 500 mg
--Standardized Curcumin, 600 mg
--Standardized boswellia extract, 400 mg
--Pycnogenol, 200 mg
--Omega 3 fatty acids (from fish oils or algae), 1000 mg
In addition, here is a list of other minerals necessary for calcium to be
absorbed (the article recommends a multimineral supplement designed for bone
health): magnesium, vitamin D, vitamin K, boron, silicon zinc, copper.
Linda

Hello all,
This might me viewed as a sort of part 2 to Marks latest post. Here is
my response from Dr. Siegel. As you can see he keeps pushing for DMARDs.
I do have some questions about sulfasalazine, what is it and is it as
bad for you as MTX and gold? Dr. Siegel keeps telling me that it's very
safe and effective. Will taking sulfasalazine hurt the AP progress?? To
be perfectly honest with you all I am not considering adding any agents
to my treatment whatsoever! I feel so damn good I can't believe it, so
why the hell would I add anything? I think Dr. S. thinks my improvements
are due to the placebo effect and the my initial herxheimer was nothing
more than a flare that just happened to coincide with the start of the
AP. Boy does that seem like B.S. to me! There are just too many people
that have that reaction and it's predictability relating to AP
initiation is just too strong, anecdotal or not.
I guess the real question is why do they keep trying to put me on these
toxic substances (this question is more rhetorical than not at this
point, I mean how many times can we ask the same question?!)
Anyway, I'm not taking them. Maybe I can echo Mark statement that when
I'm in a wheelchair maybe my opinion will change, but as far as I can
tell I am in a "if it ain't broke, don't fix it" place....
I wish Dr. Brown was still with us.
Dr. Siegel also pasted in most of his reply to Mark in my e-mail, though
he left out Mark's comment about me being the bigger crackpot... Oh
well. <g
Take care all,
j.

I found this article in the Great Smokies Diagnostic Lab's newsletter.
Linda

Here's another URL you might like to visit for OA and RA:
http://goodmedicine.ninemsn.com.au/factsheet/factsheet_display.asp?articleid
=166
It contains an article on Cartophrin - a drug used for OA in dogs and now
used in a trial on humans.
Also contains some stuff on prednisilone taken with other NSAIDS for RA.
Love and hugs,
Jude.

Hi Group,
Just watched a program on ABC TV - Quantum which had an article on
Rheumatoid Arthritis. For anyone interested, here is the URL:
http://www.abc.net.au/quantum/scripts99/9902/arthritiscpt.htm
It shows what we, as patients, are up against in the battle for the cure
for rheumatoid diseases.
Love and hugs,
Jude.

Hello me again
Ethel:(I hope I write your name correct this time) could you please tell me
whats the diference between AR and the psoriasis? just curiousity,because a
friend of mine has a terrible AR but I don`t know what kind because she only
knows that is heritage from her moms but I don`t think so and I`m trying to
convince her to take the protocol and to get into the group I hope she listen to
me.Thanks a lot.Hugs from out here.Rocio

I doubt that Dr. Siegel would mind if I forwarded his answer to my questions
(I especially like the notation about my questions being intelligent and
insightful - LOL!) I thought the information would be interesting to the
group, although most likely many of you will disagree with him if you have
had negative experiences with the drugs he mentions - please note that if
you do disagree, he would like to see your information/facts/backup - fair
enough. If you have thoughts on what he has to say, I am sure I could
forward those on to him - seems like he is a good guy who will at least take
the time to read what we have to say (within limits, I'm sure!).
Mark

Dear Group,
About two years ago SKIN-CAP was introduced to the group and several
people with psoriasis found it very effective, but then the U.S.
government pulled it off the market.
In Dr. Julian Whitaker's February issue of Health & Healing, there is an
article on another product called Dermazinc-Plus. He says,
"Dermazinc-Plus has a success rate of over 90% in the treatment of
psoriasis. Dermazinc-Plus is a "spray containing zinc pyrithione, a
compound that helps to halt proliferation of epithelial cells, and
clobetasol propionate, a corticosteroid approved by the FDA for the
treatment of psoriasis."
A non-prescription formula of Dermazinc-Plus (without the steroid) is
available, but Dr. Whitaker reports he has no experience with it. Both
products are distributed by Sanavita Enterprises 1-888-700-VITA.
Outside of the US, call 213-380-0717.
Ethel

Dear Linda,
Keep the whole body warm at all times. Especially keep the chest and
stomach area of the body warm and wear thick gloves, socks and warm,
waterproof shoes.
You may even need warm clothes in summer if the problem is severe. Also
keep the circulation in good shape. Raynaud's improves with time on the
antibiotics.
Chris.
Up to now I've always thought that Raynaud's was the kind of
problem that people just have to live with. In your various cases, have you
always thought the same thing? Have you ever heard of or tried anything
that is supposed to keep the red/white/blue fingers and toes more normally
pink? Thanks for your input!
Linda Mazumdar
MCTD 30 years; AP 9 months

Dear Liz,
It means that 'normal' is between 0 and 200 and that anything less than 200
doesn't need treating. However, especially for scleroderma patients, the
ASO titre needs to be zero for this therapy.
Chris.
I just got my ASO titre results back and need some help interpreting them.
When I asked my doc, he said they were negative. I asked "Does that mean
zero" and he said they just said negative, and gave me a copy. Now that I
get it home I see it says under reference range NEGATIVE =(200 Does this
mean it could be anywhere up to 200? Or does negative mean it's at zero?
Anyone have a clue about this? LizG

PLEASE don`t get angry try "everyone" to understand the situation of each one of
us,we are here for support and caring, a lot of love and interest info don`t you
agree?? we lost time and good feelings reading mails that are that way.just
THINK.Hugs from here Rocio

SORRY welcome Alana.you`ll enjoy this group!!!!you`ll see.Hugs Rocio

Hello everyone thanks for the advise and the support and EVERYTHING like
always...
LINDA: how nice words you said but thats not true just answering the same way I
feel and yes I have a lot to give but sometime you don`t have good luck with
some kind of people that doesn`t appreciate the way you wanted so thats
why???!!!!anyway thanks a lot.
JOE: Thank you also and yes Ethen and Chris gave some advise and info about it
so I don`t have to worry,this thing is just working and thats the great
thing.Hugs to everyone.Rocio

For a detailed article on improving the
indoor air quality of your home go to the
following URL:

I have been taking Ultra Flora acid. from Megagenics- Dr Franco. If anyone
that has taken Megagenics brand been able to find a comprable acid. that can
be bought in a health food store -can you please email me privately? (I have
tried the Natren brand and did not like the taste.) It is such a hassle
having to get it through the mail!
Thanks,
Carol*

I just got my ASO titre results back and need some help interpreting them. When
I asked my doc, he said they were negative. I asked "Does that mean zero" and he
said they just said negative, and gave me a copy. Now that I get it home I see
it says under reference range NEGATIVE =(200 Does this mean it could be
anywhere up to 200? Or does negative mean it's at zero? Anyone have a clue
about this? LizG

In a message dated 99-03-17 08:55:36 EST, you write:
<< Al, this personal attack to people in the group was absolutely uncalled
for! I was hoping that it was going to go smoothly this time, but jeez, you
sure blew it! And yes, I'm posting this to the group because I want everyone
to know that there is no reason to attack anyone, just let it slide! We're
all just people...
Dear Maria:
Thank you for your opinion that I blew it. And I'm always going to blow it
when it comes to trying to save this board from the inconsiderate gabbers.
I've done it before and I'll do it in the future.
Yep! The instigators are throwing stones ... Just like I knew they would.
Now we'll hear one of those real sad story from one of the violators who try
to justify their abuse of the group by telling about how they almost died so
they'll get pity instead of blame for crapping on everyone else. Then everyone
can throw stones at the person like John, who pointed out the transgressors,
as if John was the real abuser. Yep, we've aeen it before.
Yes, we're all just people, BUT some are darn inconsiderate of others.
You've personally been on this board long enough
to know who is wrecking this board for everyone
else. Their names were included in the list.
I won't bother posting this blubber on the board.
Better health, Al

I need help with 2 problems, one for me and one for my mom. I'd appreciate
any and all comments.
My problem is that I've been steadily falling apart for more than a month
now and I desperately need reassurance that I'm having a herx rather than a
flare. Some history to help you experts out there -- I was diagnosed with
RA in August/98, began Plaquenil 400mg/day in Oct/98, started AP Dec./98
(100 mg. Minocin 2X MWF) along with adding acidophilus 2 caps 2X daily. I
was in terrible shape when I started the AP so I don't know if I had a herx
at that point because I already felt so awful. I very slowly started
improving after starting the AP, pretty much without incidence except
initial dizziness. In late January, I developed a yeast infection, treated
it with Canestan, which cleared it up. Shortly after this, I began getting
extremely sick every Saturday night (no, I wasn't partying or anything fun
like that) with what I now believe are the symptoms of leaky gut syndrome
(this condition really needs a more elegant name). This progressed during
February to the point where I was sick at least every other day and was
often up most nights with stomach pain. During this period, I was losing
weight fast and my RA was slowly getting worse. You folks came to the
rescue with the idea to take olive leaf and slippery elm to combat the
leaky gut thing. I started that about 2 1/2 weeks ago and it definitely
seems to be getting better, however, my RA is still bad or worse. My
theory, which I'm desperately trying to cling to, is that when I developed
the leaky gut, I wasn't absorbing anything properly, including meds. Now
that I seem to have that under control, I am absorbing the medication
better and my system is reacting like there's been a medication adjustment
by having a herx. Am I nuts or is this logical? I have been feeling
absolutely awful with pain everywhere (last Thursday and Friday, it was
even in my breastbone so bad that it was excruciating to just breath),
tremendous fatigue and I keep bursting into tears without even a Hallmark
commercial to set me off. I wake up 20 times a night and while I can't say
I have night sweats where I wake up drenched, I do feel kind of clammy all
night. So, please, everyone, give me your diagnosis -- herx or flare? I
can put up with anything if it's a herx and I'm getting better but I'm
concerned if it's a flare and I just sit and take it, I'm letting damage
occur. I'm afraid to check in with my doctor because he'll just use this
as an excuse to say "I told you this wouldn't work" so any advice or
encouragement would be appreciated.
My mom's problem is that she's scheduled to have major foot surgery in 2
weeks to repair the damage caused by her RA. She's rarely had swelling
problems with her feet but the last 2 days, they've suddenly started
swelling, although she says the swelling isn't painful. If she can't get
the swelling down, the surgery may have to be postponed so we need any
ideas you may have. She's not on AP yet (she's thinking about trying it
after the surgery) and she's mostly handled her RA by being very careful
about her diet (pretty much what the group suggests, including lots of
water), taking herbal supplements, using magnets and taking an
anti-inflammatory as needed. Her anti-inflammatory doesn't seem to be
helping this particular swelling so she started trying the magnets on them
last night but so far they're still swollen. Any suggestions you have
would be greatly appreciated as I'm feeling somewhat guilty that she's
gotten stressed out worrying about me and the stress may have brought on
this swelling. I'll feel just awful if she has to postpone her surgery.
Thanks in advance for your time and help.
Paula

Okay, everyone, time for a joke. It's a little rude so I hope no one will be
offended.
Paula

Dear Group,
I've been monitoring the MCTD/UCTD support group list, and I have a
question. Have any of you heard of the drug Cardura, which is supposed to
alleviate some of the symptoms of Raynaud's? A few people on the other list are
taking it, and they claim that it helps.
Up to now I've always thought that Raynaud's was the kind of problem
that people just have to live with. In your various cases, have you always
thought the same thing? Have you ever heard of or tried anything that is
supposed to keep the red/white/blue fingers and toes more normally pink? Thanks
for your input!
Linda Mazumdar
MCTD 30 years; AP 9 months

This is email I got from the support site form. I dont know anything about the
Psoriactic and AP. If you do please email this person at their address below and
give them some help.

Heres a little update on my roller coaster month. Dr. Brown was right when he
said Feb. was the worst month of all.
Recap: Last month I went to the Rheumy and she threw the Lupus word at me. My
ANA was 1:640 and my anti-DNA was speckled. I panicked and thought the Minocin
may be producing a Lupus like reaction. I stopped taking it and switched to
Doxycycline. Also I have not been on the IVs of late since the Home Care booted
me off saying public funds were not to be used for experimental treatments. Then
I had a domestic flare that would make the one on this email group look like a
tea party. The stress was high, the doxy was making me sick to my stomach and I
wasnt on my IVs. I felt absolutely awful. Naturally I was all my myself in my
misery with the exception of a call to you know who....(Ethel)
I was sent for bloodwork and it came back negative. Oh Man...after all that!!!!!
So.....I decided to go back to my doctor and start the IVs again (and pay out
of pocket) and get back on the Minocin. My domestic front settled down and I am
actually happier than I was before. I guess you need these little marital
explosions once in a while to clear the air. I put a number of issues to bed and
all is running smoothly again.
Until.....and this is interesting given I havent really experienced much
herxing as a Scleroderma sufferer.
I started back on the Minocin and decided to take 200mg a day for a week and
then go back to MWF. I was feeling like I wanted to do a little catching up.
Well......Hello Mr. Herxheimer. Everything hurt. My middle toes even hurt to
stretch them. My knees ached and my sore foot came back. I felt like the
sidewalk in front of a 7-Eleven. It was quite shocking to me since I have had
little to complain about for well over a year.
So...I am a believer in the "different drugs for different people." Minocin
seems to be the one for me. Also, that dose made a huge difference. I have gone
back to the MWF as of this past weekend and today I was in a one hour Aerobic
Kick Boxing session. What a difference. Looks like I will be hitting the slopes
soon too.
The point of all of this is 18 months is still early in this treatment. Take it
slow and don't assume you're out of the woods when you are feeling fine.
Donna
Ottawa, Canada
Scleroderma, Raynaud's 01/95, AP 10/97
(My Story) www.compmore.net/~donray

JohnP,
This happens once in a while, we all get excited and chat with eachother and
want to share it with our extended family. Those of us that have been here a
while have seen this happen quite a few times. It's true, sometimes we do get
carried away, and it takes someone mentioning it to remind us to get back on
track. We try to post to the group things that would be of interest to
everyone, even though it really relates to only one person. I'm therefore
posting this to the group rather than just as a reply to you, since it relates
to us all!
Maria
In a message dated 3/16/99 12:43:44 PM Eastern Standard Time,
johnp@... writes:
<< Why
do certain group members insist on posting every comment to the group,
when their comment should be directed to the individual their responding
to? These prolific writers in my opinion are monopolizing my time with
comments which are meaningless to me, and threaten to prevent me from
partaking in this very valuable exchange of ideas. Over a 6 day period
there were 517 posts with just 13 individuals responsible for 61% of the
total posts.

Carol,
Once again, you are a wealth of information. Thanks so much for taking the
time to look it up and share it with me!
Maria
In a message dated 3/15/99 4:59:17 PM Eastern Standard Time, bzarn@...
writes:
<< Maria, the following came from the Vitamin Bible by Earl Mindell:
Toxicity: 20,000 IU daily over an extended period of time can produce toxic
effects in adults. Signs of toxicity are unusual thirst, sore eyes, itching
skin, vomiting, diarrhea, urinary urgency, abnormal calcium deposits in
blood-vessel walls, liver, lungs, kidney and stomach. Daily doses most
often taken are 400 to 1000 IU. I was taking a prescription of Vit D
earlier, quit and now think I may get some again. CAROL

OK
So I. have done the math and John wins today's prize for generating the
most responses from an impassioned plea to shorten our thoughts and
communications online. Out of the 53 posts received from the group posted
directly after John's post a full 50% of them had to do with his post.
There is an old Buddhist saying......."You become what you resent"
Here is another........ "What you resist you draw near you"
I don't mind being on the winning list as I never was very controllable
through shame, guilt or any other fear based emotion. Rather I am concerned
about John's well being and also about Robert's Well Being. Heck, OK I admit
it I am concerned about all of us.
One good thing this has proved, we all do still have an opinion even it is a
bit brained fogged. And it appears that most of us still wisely believe in the
freedom of free speech and the freedom of the press. We all don't like
oppressors too much. we are a good people a kind people.
Now for the medical part:::::::Take your meds:::don't sign up for anything
in Texas:::: and be good to your pets:::::: Spread Love not Fear:::::::: and
Be kind to everyone as you meet the same folks on the way up as you do on the
way down. Thank you John and Robert for todays entertainment :-) I love a good
row!
Kelly

Well, all I got to say is how come that Arkie girl (SC) is ahead of me on the
list? She must be stuffing the ballot box! And we know Orcom cheated !
Well, I think the person who said that this list is not just about information
was correct. I have been on this list for some time now and I stand in awe of
the display of caring for other individuals. If I could only be half the person
some of the folks on here are, I would be a happy camper. I tip my hat to you
all - you know in your heart who you are.
I think that surely we could all be mindful of the posts we send across the
list, but again - isn't that what's so great about us all? These little short
notes tell me something about that person - they reflect their personality and I
get to know them better that way. Heck, I'm an information junkie, but that
doesn't mean I want to be a little "info rat" and sit in my tunnel devouring my
latest stats. It does me good to see some good ol' "trivial" talk now and then.
You gotta remember what's your cup of tea might not be the next person's cup of
tea - to think otherwise is to be selfish.
Everyone take a chill pill now and go back to taking care of each other!) :))
Mark
RA 4/98 A/P 7/98
Mino (100mg/2x/daily)
http://members.tripod.com/~Mark_Holmes
RA Chat: http://members.tripod.com/~Mark_Holmes/RA/ra.html
mholmes@... ICQ # 18123139

Hi group,
Why don't we use the chat line more for support and consolation. I think
it is a great oppotunity to be able to talk and send "little" messages
there - maybe it could limmit the mail load a little.
Sarah, Denmark
PS. I just can't lock on myself - am always told to try another time??
Get Your Private, Free Email at http://www.hotmail.com

Here's another link that is a bit shorter and explains in a briefer fashion:

Prosorba Column Approved by FDA for Use in Rheumatoid Arthritis
Breakthrough Treatment -- First Available Non-Drug Alternative -- Launch set for
April
SAN DIEGO--(BW HealthWire)--March 16, 1999-- Conference call 3/17/99 at 4:15
p.m. EST
I'll spare you the length of the article. If you are wondering what the heck it

FDA approves rapid Strep test
NEW YORK, Mar 16 (Reuters Health) -- The Food and Drug Administration (FDA) has
approved a rapid throat swab test that detects streptococcus A bacteria in
minutes, the manufacturer, Trinity Biotech, announced on Monday.
The Uni-Gold Streptococcal A Test can help rapidly determine whether or not a
sore throat is actually ``strep throat,'' and thus requires antibiotics. The
test, which can be conducted in a doctor's office, could cut down on the
unnecessary use of antibiotics to treat sore throats that are not caused by
Streptococcal A, according to the Dublin, Ireland-based firm.
Brendan Farrell, president of Trinity Biotech, called the approval a
``landmark.'' He said, ``This Strep A test is our first non-pregnancy Uni-Gold
product to have US FDA clearance.''
The company estimated that the worldwide market for Strep A rapid tests was
around $90 million in 1998, with the US accounting for $40 million of the
market.
According to Trinity, the FDA is currently reviewing for approval the company's
Uni-Gold HIV and Uni-Gold H. Pylori tests. On Monday, the company's stock
climbed 3/16 to 1-5/8 in early afternoon trading on NASDAQ.

Hi, I have just come apon this list and would like to
introduce myself....
I am a 19 year old male, and have had psoriatic
arthritis for about 4 years now. It began in
my ankel and now the following joints are affected:
-3 toes
-r and L ankles
-R and L knees
-lower back
-L shoulder
-Right thumb
-3rd finger L hand
I am on Methotrexate, Naproxen, folic acid, sulfasalizine. As
well have had my R knee
drained
three times and had two cortazone shots. All this in my opinion
has been uneffective in my
treatment. At 16 I was fired from my part time
job as a grocery clerk, and had to finish high
school through corospondance. I am currently
unable to go to college due to constant pain 24 hours a day. I
have trouble sleeping and
my energy level is way down. I attend physiotheray
3 days a week and work out 25 mins, 3 times daily. If anyone
could share a similar
situation or give me some hope, or suggestion I would love to
hear it!! Thank you in advance!!

SORRY ETHEL I don`t know why I always call you that name, I`m truly sorry.Thanks
Rocio

Hi group:
DONNA: Yes I`m on minocyn,I started yesterday but I began feeling some pain in
my hands but maybe I have to get use to...Thanks anyway.
ETHAN: Thank you I`ll read it again because I don`t remember this kind of
stuff,but right away I`m gonna do it thanks for the advise.QUESTION: When I
finish the 5th week do I have to continue the same dosis?
Hugs to everyone I`ll need it as usually all your support.love you.Rocio

(yawn). Go to the time out corner guys and cool off. This is all old.
Get Your Private, Free Email at http://www.hotmail.com

Group,
I've been there and done that and what is happenning now, I've been
through before. I've been on this list for 2 yrs now and I don't plan
on getting off it permanently because of the flaming that goes on when
someone gets upset. It's not worth getting upset about this stuff.
People come and people go and it all comes back to where it was in the
beginning. Like it or not. This is the best group of people you'll
ever find and without this list and website, where would we be?????
Maybe crippled???? Maybe in a wheelchair?????? I'll tell you when I was
diagnosed I didn't have a computer and when I did get one and got on the
Internet this was the first thing I found on my disease. It was the
LUCKIEST day of my life. I have come so far in two years and I would
never give that up for anyone or anything. I will try to be more
patient with people on the list and put up with things that I do not
like because I am not perfect and neither is anyone else. Where would
we all be without it? Let's just ask ourselves that and put things into
perspective.
thanks,
jan perdue

This flaming attack on John is absolutely uncalled for! You cite love and
winners, but your screaming, yes that's what those caps are, is anything but
loving. I was not in the least embarassed to see my name in lights. Just
curious given that my keyboard was recently down for a number of days. If
people cannot understand why quickie one-liners that offer no coherent
information to anyone should be private, then something is seriously wrong. I
watched the FM support group turn into a completely useless forum for support
or anything else because of the lack of understanding and kind of reply that
you just posted. It is called a flame. I've only been here a few weeks and
was really pleased with being in a flame-free zone. I was also really pleased
that it was running a good 70-80% medically relevant information with only
about 20-30% being trivia. I like the jokes as much as anyone and want them
to stay. The one-liners that have no meaning to me at all I'd prefer to go
private. But no matter how I feel, your attack on John is the kind of poor
nettiquette that should be squelched pronto. You haven't a clue how bad a
private forum like this gets when the figures for relevant to irrellevant
posts get reversed. To nip it in the bud when there are few of us is a really
good plan. Otherwise one day down the road you are going to have this
wonderful private forum with 300 messages a day, 275 of which will be of no
use whatsoever in combatting these dreadful diseases we are all fighting.
Nobody, not even John I imagine, is against love or winning or support. We
are, however, concerned with getting so out of balance that the forum becomes
absolutely useless to anyone.
Sincerely,
Jan K

Dear John: I might start by saying that this sounds like a "Dear John"
letter. For that, I truly apologize. I too pour through the many
volumes of mail to gleen a small amount of information. I also do not
frequent the pages with my replies or comments. I understand the
frustration of skipping a day, clicking on, and there are 200 messages
to download and read.
Not to be critical John, but YOU ALSO HAD A CHOICE TO E-MAIL THOSE
INDIVIDUALS DIRECTLY AND VOICE YOUR DISSATIFACTION, HOWEVER YOU CHOSE TO
VOICE YOU ANNOYANCE BEFORE THE ENTIRE GROUP SIR. WHY DID YOU MAKE ME
SIFT THROUGH ALL OF THOSE STATISTICS WHICH MEANT NOTHING? WHY DID YOU
NOT FOLLOW YOUR OWN ADVICE, SET AN EXAMPLE, AND TALK WITH THEM
PERSONALLY ABOUT YOUR FRUSTRATIONS? OR WHY DIDN'T YOU DO LIKE MOST OF US
DO SIR,....SIT DOWN IN THE BACK SEAT OF THE THEATER, DON'T BUY ANY
POPCORN OR DRINKS OR PAY ANY ADMISSION, AND THEN IF WE DON'T LIKE THE
FEATURE, WE CAN QUIETLY SLIP OUT WITHOUT BOTHERING THOSE THAT ARE
ENJOYING IT. A LITTLE HUMILITY TOWARDS YOUR FELLOW MAN WILL EARN GREAT
REWARDS IN HEAVEN.
YOU ASKED, "WOULD SOME ONE PLEASE EXPLAIN TO ME WHY ALL OF THESE
INSIGNIFICANT MESSAGES NEED TO CLOG MY COMPUTER?"
THE ANSWER SIR, IS RIGHT BEFORE YOUR VERY EYES, BUT YOU COULDN'T SEE THE
FOREST FOR THE TREES. THE ANSWER IS "LOVE OF LIFE, HAPPINESS, LOVE FOR
THEIR FELLOW MAN, BUILD A PERSON UP AND INCREASE THE HEALING PROPERTIES,
PLAIN AND SIMPLE, JUST HAPPY TO BE ALIVE, LOOKING TO THE FUTURE WITH
RENEWED HOPES FOR A PAINFREE LIFE BUT MOST OF ALL, VIST WITH A "FAMILY"
OF SUPER, CARING INDIVIDUALS WHOSE #1 PURPOSE IN LIFE IS TO ENCOURAGE
ANOTHER INDIVIDUAL TO KEEP GOING, NO MATTER WHAT THE COST.
BESIDES THIS JOHN, IT REALLY THRILLS ME WHEN I SEE THESE PEOPLE PUSHING
THOSE KEYS, SPREADING A LITTLE HUMOR, TALKING ABOUT NOTHING, MAYBE JUST
SPAVOKATING, AND YOU KNOW WHY?????BECAUSE THEY'RE WINNERS, JOHN,
WINNERS,
EVERYDAY OF THEIR LIFE THEY FIGHT A BATTLE I AM FORTUNATE ENOUGH NOT TO
HAVE TO DEAL WITH, THANK GOD, AND SOMETIMES ITS A HUGE EFFORT FOR THEM
TO JUST HOLD THEIR HANDS OUT TO TYPE A MESSAGE FOR US TO READ...SO I
READ IT JOHN....THEY'RE WINNERS AND I APPLAUDE THEM.
CLAP..CLAP...CLAP...CLAP...CLAP...CLAP...CLAP...CLAP...CLAP...CLAP...CLAP
IN CLOSING LET ME ASK MYSELF A QUESTION SIR, "ROBERT, WHY DID YOU MAIL
THIS RESPONSE TO THE WHOLE GROUP RATHER THAN JUST MAILING IT TO JOHN
PERSONALLY?"
ANSWER: "BECAUSE I WANTED JOHN TO FEEL SOME OF THE HUMILIATION AND
EMBARASSMENT THESE DEAR SOULS MUST HAVE FELT WHEN THEY SAW THEIR NAMES
IN LIGHTS." SIR, YOUR ACTIONS AND COMMENTS ARE INDISPICABLE!!!!!
ROBERT R. BRASWELL, CHATTANOOGA, TENNESSEE

Hello everyone:
LIZ G: thanks for asking I was feeling great I started yesterday but I don`t
know if it`s a coincidence but since yesterday at the afternoon I started with a
pain in my left hand like if someone kick it and today I feel terrible all my
left hand is in pain and the little finger all the joins and all is in pain I
feel terrible about my hand I can`t do anything;in fact I had a craft class and
I couldn`t make it I feel terrible;so I don`t know what to think,did this is
normal???what do you or everybody thinks,is this o.k.? or normal??Have a nice
afternoon.hugs Rocio

John, I intended to send this message to you privately but deleted your post
along with your address. I was wondering if you are having such a big
problem with the so called excess mailings why are you not privately
complaining to those that you feel are abusing the group. I, for one, enjoy
each and every posting. CAROL/PINEY/CANADA

Does anyone have a full circle of experience with minocyn/clyndamyacin or
equivalent antibiotics on psoriatic arthritis? I'm getting ready to fire my
rheumatologist and start AP with a non-traditional doctor and want to know what
experiences others have had. I've had the stuff for 2 years and am currently on
indocin and cytotec. Any feedback would be appreciated. I'm interested in
dosages, effectiveness, duration, etc.
Thank you.
Jeff.

In a message dated 99-03-16 12:43:32 EST, you write:
<< Now will someone please explain to me why this author needed to clog
everyone's mailbox with responses such as these? I'm not picking on
just one individual, because many individuals are doing this.
Good try John, but it will not do any good.
There is nothing that can be done to stop the gossipers who continually abuse
the whole group but add little in the way of substance. This problem has been
mentioned previously and all it does is instigate attacks from the main
violators.
Yes, the abusers tell us that we can use the delete key. But why do 300 people
have to use the delete key for a msg that should have been sent privately in
the first place? Yes, we all need support, but why can't individual support be
sent privately? Yes, I'm convinced it's all about ego and self aggrandizement.
Yes, they are killing a good thing, but, in my opinion, they just do not care.
Maybe if 300 of us forwarded individual gossipy msgs back to the sender, the
abusers would eventually figure out what they are really doing. Something has
to be done before we all unsubscribe. Better health, Al

I agree the volume has got too much but I quite like the mix of support and
information. Perhaps if we could all try to keep the total postings per day
below a certain number, say 30 -40 and be mindful of the content, personal
oneliners to the person, sparkling witticisms to the group!
Barbara

Snooks writes:
Chiu Replies:
<<I think the valid question here is - why would Iraq use a slow acting
agent such as Mycoplasma when other more effective agents such as
Anthrax etc are around?
Also, it is likely that their own citizenry would also become
affected.
Hi Doc! Geoff Crenshaw here.
In the Iran-Iraq war, Iraq commonly zapped their own civilian & mil
personnel with biologics, as well as enemy personnel. They are
particularly indiscriminate about collateral damage via friendly fire -
something that comes from the top. They also used biologics on the Kurds
in Northern Iraq. Their biologics are ranged based primarily on the
motive of Mr. Hussein and secondarily upon his religious beliefs. It is
this secondary direction which encourages the development of slower
acting generational biologics such as the Mycoplasmas. This secondary
consideration is not to be underestimated by way of our own personal
prejudices, experiences or beliefs. The only alternative to the draft in
Iran during the Iran-Iraq war was to work at the digs and rebuilding of
*Babylon*. There the bricks which have been unearthed bearing the
inscription, "By Order Of Nebuchadnezzar" have been, and are being,
altered to read "By Order Of Nebuchadnezzar And Saddam Hussein". This is
the place Mr. Hussein envisions for himself in history. Remember, old
'Neb' hasn't been a hot property for several thousand years. So what's a
generation or two in eliminating your 'real' enemies?
The USG, by contrast, develops and deploys biologics, including
Mycoplasmas, as faster-acting agents primarily for defoliation as an
adjunct to jungle warfare. This was the impetus for Agent Orange and
now, absent wholesale military op's in jungle areas, development is
being funded for the supposed 'war on drugs'. Our deployment of such
chemistry on or near populated areas should speak volumes to anyone who
believes *any* human government - even ours - can be wholely trusted.
HTH
--
Regards,
Geoff Crenshaw, ACC

Just a new kid on the block looking for some people who understand this journey!
I just started AP (in week 3). I am anxious to see some indication that it is
working, but I seem to have such fluctuation from day to day in my joint pain.
Actually, I would have to say that some days my knees are actually worse, but
more muscular than joint. Some days I just hurt everywhere in everyway!!!
I have been told that I have inflammatory arthritis. I am on my second
rhematologist as my first was a streamline conventionalist...I sought out a Dr.
that at subscribed to AP (thanks to Rhuematic.org case histories!)
I am on 5 mg prednisone, 2000 mg Relaphen, 400 msg Plaquenil, and 200 mg
doxycylcine /day. I was on 15 mg prednisone and tapered down to none. I was
pretty uncomfortable, so my Dr. suggested going back to 5 mg. I hope to get it
under that soon.
Any words of wisdom?
Alana

I didn't even request this information, but they sent it to me anyway. So I
thought I would pass it along for the group to see. I know this doesn't
apply to the AP, but it's still about our problem so I thought I would
share. After this, I will try to keep such posts to a minimum. I am not
pushing dmso or msm or any other product or suggesting even that they work.
I suspect most of the evidence is anecdotal. In a certain way, perhaps we
should sympathize somewhat with these folks, because we know what it's like
trying to prove a theory without a lot of numerous double blind studies.
That doesn't mean I think dmso works, but I think it would be interesting to
read the Russian studies.
Mark

Saw this and thought someone here might like to put their two cents in
regarding the AP!! I'm gonna check it out myself later, gotta get busy on
work now, LizG

I give up! I have scleroderma, and although I have survived my doctors
prediction of dying within two years (thanks to the AP), I don't think
that I can't survive the volume of mail that this site produces. I know
that I'm not going to make any friends here with this note. I look
forward to learning more through the exchange of ideas, and hate the
thought of doing without this group. So before I quit I am going to
attempt effect a change without being "mean spirited".
Rarely do I post messages to the group. I do however respond directly
to individuals with comments and questions. And this is my point. Why
do certain group members insist on posting every comment to the group,
when their comment should be directed to the individual their responding
to? These prolific writers in my opinion are monopolizing my time with
comments which are meaningless to me, and threaten to prevent me from
partaking in this very valuable exchange of ideas. Over a 6 day period
there were 517 posts with just 13 individuals responsible for 61% of the
total posts.
AND THE WINNERS ARE:
NAME # OF POSTS % OF TOTAL
Briarwood 51 10%
LizG 49 9.4%
SC 37 7.1%
ORCOM 24 4.6%
Ken & Linda 20 3.8%
Jan Kristen 20 3.8%
Geoff 20 3.8%
AJAY 18 3.5%
Holmes, Mark T 18 3.5%
KPSB2 17 3.2%
Cookey Stonekey 16 3.1%
DMBGONE 14 2.7%
LvLaboradorios 12 2.3%

forwarding this as I made a typo in the addy the first time

Someone's asking about RA and viruses on asa under Rhematoid Arthritis viruses.
I e-mailed him info and gave him a friendly warning about bringing it up on asa,
maybe he will join us here, it's for his mother in law. LizG

Group,
If you are afraid of getting viruses, this is a website that can tell
you about them.
jan perdue

Hi group,
maybe I have found a doctor, who knows/has worked with AP. I heard that
she's been working with a doctor Blake, Tennessee. I just want to check
with you if any of you know a dr. Blake and if he is an AP doctor,
before I contact her. I am really hoping for this, so please help
Hugs from Sarah, Denmark
Get Your Private, Free Email at http://www.hotmail.com

Hi Rocio, just wondering how things were going with the AP for you. Any flares
yet? Just curious. LizG

While we all agree on one thing.....AP....we all do many different things
along with the AP. Diet, exercise....or not!..different supplements,
NSAIDs and many other treatments.
What works for one very well may not work at all or even cause side effects
for someone else. We each have to find the path that works for us. It's
great to share all this information with one another. While reading Dr.
Jacob, Lawrence and Martin Zucker's book on The Miracle of MSM I read a
very important remark. NO, NO, NO, Don't stop here.....this ISN"T about
MSM!!!!!!
From the book" Whether you're taking a medication or a nutritional
supplement, you should always take the least possible amount that gives you
the beneit you desire. More is not necessarily better.
Each of us are unique individuals with different genetic makeup, sizes,
hormones, tolerances, energy, resistance and levels of health or illness.
Even it two people have the same type and severity of disease, each brings
into play a different set of strengths or weaknesses with which to
counteract it. Because we are so different, our bodies also respond
somewhat differently to medication. One aspirin may work for your
headache, but your brother with the same headache may need two. The same
is true of natural remedies and nutritional supplements."
So guys, this explains why some of us use mino, someone else doxy - some
use NSAIDS, some MSM, some RA Spes - some, Noni, some looking to the New
arthritis drugs and on and on it goes. I thought they stated it pretty
well.
Judy (deejay) Stevenson, Wa Scleroderma 10+ yrs. AP 2 Yrs.

There are no warnings about sun sensitivity on erythromycin in "The Pill Book"
5th ed. as there are for tetracycline and minocycline. I've taken Ery. a lot
and never was warned about sun. LizG

A bear ate you goat, Julie? And just how do you plan to get him? I'd love to
hear about that! We should trade e-mail names Julie, mine started with a family
joke about how we had to tote wood to heat our house and scrub out diapers by
hand in the laundry sink with a bar of soap when we were too poor to afford a
washer and soap powder. We do get the occasional bear or timber wolf around,
and once in awhile a stray rattlesnake, but it is paved road to my door and I
call the trapper to catch pesky wildlife that won't go away on their own, like
the possibly rabid family of possum that moved in under our porch one time to
pilfer the dog food. Sounds like a lot more action in your neck of the woods.
Where are you from? I live in rural northern California on the edge of a small
town. LizG

Hey we need some new pictures of folks in the group to put up on the support
site. How bout it?
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

I recently started erythromycin (stopping minocin), and will be heading to
Jamaica in 2 weeks. Does my photosensitivity increase on erythromycin?
Oh no...
- Mike -

Saw Dr. Franco yesterday. Doree (his delightful
office manager), said they are looking for a bigger
office site. Once they get in and settled, the web
site will be put on the computer. It is ready to go
now, just waiting to get to their new home before
starting it up!
Dottie

Hi gang,
Just thought I would share a recent experience with
y'all. I had a lower respiratory within the past two
weeks. After a trip to the Family doc, he started me
on Biaxin for 10 days. And miracle of miracles, I had
a dramatic decrease in morning stiffness of my
fingers! Luckily, I was going to see Dr. Franco
yesterday, and he agreed that the Biaxin is the drug
of choice for me. God does work in incidious
ways..... Lucky for me !!!
Dottie

I thought I would share a rather interesting conversation I had with Dr.
Jacobs today out in Portland. I had decided to call him re: a statement I
had seen in his book cautioning one about taking MSM at the same time as
aspirin as both can be blood thinners. I wondered if this applied to Nsaids
as well (which I kind of assumed it did) since in his book there were a
number of patients still on Motrin while taking MSM. Well, I never actually
got that answer. His first question was after I told him I had RA - you're
not on Prednisone are you? I told him no, but he asked that question again
later as if he were sure I must be. He went on to say that that stuff and
the DMARDS like methotrexate were no good at all for you. I told him I was
on minocycline. His reply - nah, that's not good enough. That's not going
to take care of it. It won't hurt you but it really isn't that effective.
I see thousands of RA patients. You should really come out here for a
couple of days and we will get you started on a program. (I think his
program consists of intravenous DMSO, followed by an oral form of the drug,
but I won't swear to that - we never really got that far into the
conversation, but he did mention intravenous injections followed by oral
therapy and I was guessing he meant DMSO). He went on to say, "whatever you
do, don't let them give you prednisone or any of those immune suppressing
drugs and believe me they'll try their best to convince you to take them".
I mentioned that recent blood tests indicated my sed rate had dropped to 14
which he thought was great - wonder how he thought I got it down that low?
He didn't suggest any hypothesis on that.
I then went on to mention that I was taking MSM and he said "no, that's not
going to do it. It won't hurt you, but adult RA is a whole 'nother ball
game. It's like fire inside your body. MSM may do some good in juvenile
RA, but the adult variety is different." I then mentioned James Coburn and
he sort of chuckled and said that he didn't believe Coburn had RA, that he
actually had "degenerative disk disease". He said that Coburn thought he
had some RA, but he didn't think so. He mentioned that Coburn was going to
be on a Friday morning CBS talk show this Friday.
He then went on to talk about his book and the number of copies it had sold
(what that had to do with anything I'm not sure). I think the point being
that his therapy is finally beginning to get some attention.
I wasn't quite sure what to think of this whole conversation. I was
startled that he was readily available to come and talk on the phone.
Whether what he does works or is credible, I really couldn't say. I would
have to go back and check Dr. Siegel's notes on DMSO and do a lot of other
research. I did think his remarks on MSM were quite interesting. Guess
I'll save my money.
I think I will send him a letter with my history and ask what he recommends
as treatment and see what he sends me back. Then I'll share it with you.
His web site is at www.dmso.org . There is an interesting testimonial at
http://www.dmso.org/testimonials/mueller.htm
Mark
RA 4/98 A/P 7/98
Mino (100mg/2x/daily)
http://members.tripod.com/~Mark_Holmes
RA Chat: http://members.tripod.com/~Mark_Holmes/RA/ra.html
mholmes@... ICQ # 18123139

By the way Mark, The Ap has kicked in long ago. I think I turned a big
corner in October after the IV's. The only real problems I have left is
the splaying that occured before AP and I think the tendon is gone.
Cooky

Ethel--Three pints of his own blood! I am glad you told this story, raises my
opinion of doctors greatly! I am taking a preventative dose of one tablet of
acidophilous (refrigerated kind) daily, do you think this is enough? The label
gives no potency, was the only kind besides freeze-dried available around here
butI'm sure my pharmacist would order for me if you think I should be using
something else. Thanks, LizG

T

I am so embarrassed! I meant to send that letter to Dr. Siegel and sent it
to the group instead. I think I am going to die. Well, at least I didn't
say anything too horribly wrong, I hope! Geez, brain fog to the max!
(sorry Joe! - hope you have a sense of humor!)
Mark
Mark
RA 4/98 A/P 7/98
Mino (100mg/2x/daily)
http://members.tripod.com/~Mark_Holmes
RA Chat: http://members.tripod.com/~Mark_Holmes/RA/ra.html
mholmes@... ICQ # 18123139

Dr. Siegel,
I suspect you have probably created a new folder in your email program
labeled " Study Patients - Crackpots" and I am probably up there near the
top with my babblings about MSM. (But put Joe Graff ahead of me - after all
he's using DMSO and that qualifies him for the top spot! Ha! ha! - don't
tell him I said that!) From our viewpoint though, we will just about try
anything as long as it doesn't kill us or cause our liver/kidneys to fail or
our hair to fall out! (and if I can't find any evidence that it is harmful)
Hopefully, I didn't push too many of the wrong buttons. My questions were
serious, however. Naturally, I am concerned about my hands. However, I
personally don't like the thought of drugs that suppress the immune system.
To me, despite perhaps their initial efficacy, they don't make much sense
when it comes to treating me as a "whole" person. I just don't like the
thought of compromising my immune system. Fix one thing and end up with
potentially a variety of even worse problems. However, when/if I am in a
wheelchair I may change my mind on that.
One aspect of this disease I'm not sure I understand: if the synovial
tissue and fluid becomes inflamed and causes pressure on cartilege and bone,
thus causing erosion, then whey don't anti-inflammatories and ice help to
control that inflammation? Or do they, but just not enough? I have noticed
that when I back off of my Lodine and knock it down to just 400 mg per day
that I can get pretty sore, which is depressing. I'm not sure I like the
idea of just masking a problem, on the other hand if my alternative is to
take an addictive pain killer, I guess I'll stick with the
anti-inflammatories,although I understand that apparently they are
ineffective at stopping the course of the disease.
I guess I want a solution for which there is currently no solution. You've
probably heard all this a thousand times. I am generally a very persistent,
pain in the a... person though when it comes to looking for a solution to a
problem. However, I will try not to take that out on you, outside of this
note.
Thanks,
Mark
RA 4/98 A/P 7/98
Mino (100mg/2x/daily)
MSM 8g/day
http://members.tripod.com/~Mark_Holmes
RA Chat: http://members.tripod.com/~Mark_Holmes/RA/ra.html
mholmes@... ICQ # 18123139

I think it was Dr. Mercola who mentioned that PABA is good for scleroderma
patients.
I began taking it about 3 weeks prior to my trip to sunny New Zealand.
Just before leaving to NZ I picked up one of my books on supplements and
checked out PABA. One of the benefits was increased tolerance to sun.
Yep!!! Even though being on doxy I could be more susceptible to sun I
found I was the only one in our group of 4 who spent a day at Hot Water
Beach who did NOT get sunburned. This place is neat.....there is thermal
water that comes up from the ground and at low tide you dig a large hole in
the sand....it fills up with hot water and you have your own spa dug with
your own little shovel. The water coming into our spa (hole) was only
lukewarm, but some college kids next to us had dug one that filled up with
very hot water...too hot to sit in. We dug a trench between the two so
that our water cooled theirs and their water warmed ours. co-operation at
it's finest!!!!! Oh yeah back to the PABA it has also helped with the
softening up of the hard skin of scleroderma. The thick patches are ALMOST
all gone!!! Judy (deejay)