Auto-immune diseases

Hi all.Have been on AP for 7 weeks, gradually increasing as is suggested.
Justthis week, I increased to 150 mgs minocin on Wed, and am taking 100 mgs
still M&F.
I woke up today with diarrhea problem, short-lived but acute! It left me
queasy, though. Could this be yeast already? I take acidopholus daily
(metagenics Ultra Flora DF with FOS) and do it 2x a day. I may forget a dose
or two a week max.
I also take many supplements but none for yeast other than the probiotics.
Should I take more? Is this a reaction to minocin or 1st sign of yeast. Is
nausea due to increased dose on Wed?
Also, I did not take Relafen this week as had menstrual pain and need advil
for that and didn't take much of that either (!) and have the worst flare in
my wrists today. Started yesterday when went to 150, but haven't been on
NSAIDs either.
Anyway, started Relafen today and will see what happens.
Main concern is YEAST. Do I have it? Should I start Olive Leaf and how
much, and what is the book Mike referred too.
Again my apologies for always being not up-to-date and asking for repeat
info but I work very long hours and commute and it's hard for me to keep up.
Thank you, and feel good.
P.S. Was feeling better till this week.

Wouldn't this be an interesting conference to attend?
http://www.ihc.net/community/conf.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

I've made an appointment with a doctor who uses the AP (Thanks for the
list, Chris.), but I can't get in for a month and I'm in a bad flare and
over-the-counter things aren't touching the inflammation/pain, so I
figure to make an appointment with my HMO doc to ask for a NSAID.
Rheumatic.com recommends Relafen and Lodine, but I don't know how up to
date that is. People talk alot about Daypro(?). Would appreciate
knowing what you guys consider safest NSAID so I can request it.
Thanks, Deb

Dr. Chiu or anyone:
Is there any more information on that research ?

Hi Group
Just thought I'd throw in my 2 cents worth on the pigmentation thing.
I'M A RED-HEAD AND COVERED WITH FRECKLES-=-- I DON'T THINK I'D KNOW IF I HAD A
PIGMENTATION
PROBLEM. LOL
It took a LOT of years to find out the up side on being a red -head with the
skin that
freckles, burns very easily and bruises at the touch
Good health and best to all
Gwen
RA 9 yrs AP 16 months (and doing great)

Hi Group,
I have read in Dr. Brown's book that he sometimes used to give small
doses of prednisone to people on the AP as an ant=inflammatory to
help the antibiotics to work. Did he prescribe this only for RA patients or
did he give it to others too -specifically for Scleroderma, which I have. I
cannot take any of the Nsaids. I
seem to be going through an extended Herxheimer and have found that
5 mg of prednisone daily gives me significant relief from the severe pain I
am having:
1. Is this considered a micro-dose?
2. How long is it reasonably safe to take this?
Thanks all,
Heather Scleroderma Feb 1998
AP Oct 1998

I was diagnosed with RA in 1990. Not much went on with the decease until
1992 when I had a major Flair. That lasted for several months ,all the
time I'm taking Nsaids can't tell you what it was but it did calm my
arthritis down. I stop taking the Nsaids after the sixth mth. and my
arthritis was not to bad if I rested or didn't get to upset with life.
It remained in sort of a remission until 1997. A that time I totally
Learned about Dr. Browns antibiotic therapy.TOTALY INTHUSED!!! So I
called my rheumataligist ,and after a lengthy period of time She agreed
to use minocin in Nov. 1998, by late Feb. 1999 my blood test indicated
lupus. She Put me on 100mg of Doxycycline my seds rate was 37. It is now
49 and I am getting Very Discourage. For a month Feb. I felt great
hardly any Morning stiffness then BANG my foot stated to throb I
couldn't sleep and I dealt with this Pain for a month until I couldn't
stand it ,so I went to my gp. and she prescribed me 100mg of celebrex
once a day. This also is very discouraging because I swore I wouldn't
take nsaids or steroids, plus the celebrex takes 2 to 5 weeks to start
working . so needless to say I am Just starting to feel some
improvement. My rheuatolagist is wanting me off of the antibiotic
therapy because she feels its not working and she has no faith in
it.This is stressing me Out Because I do not now of a other doc. that
will give this treatment. I am from Brantford Ont. my rheumy is in
Hamilton Can. Has anyone got any suggestions.
Bonnie

Hi Gang! Geoff Crenshaw here.
This is a great site for quick reviews on a large variety of herbs used
in herbal medicine, supplements, etc. All easy to read and short. :)
http://chili.rt66.com/hrbmoore/Abstracts/Abstracts.html
--
Regards,
Geoff Crenshaw, ACC

My 5 day Clind IV's have already been mailed to me and should arrive
tomorrow. I am set to start the treatment on Monday. I woke up with a sore
throat/cold this morning. Can someone please tell me if Clind that I will
start taking on Monday help an upper respiratory infection in any way?
If you have any remedy's or herbs's that I can use for a decongestant- could
you please e-mail me privately? I can NOT take anything over the counter
since my stroke as it raises my BP (like sudafed,actifed,sinutab)?
Thanks to all,
Carol*

Hi All:
I just got a call from my rheumy about my last blood test results taken
on Tuesday. He said there was a drop of my white blood cell count from last
time, which was a bit low but still within normal parameters. I don't have
a hard copy in front of me so I can't tell you what the actual count is.
From my understanding it is now under normal parameters. He advised me to
stop taking the Minocin and anything else I'm taking that's not a vitamin
(except for the Arthrotec) for the next four weeks and then have my blood
retested by my GP.
Does anyone out there have any thoughts on this? What could this drop in
my white blood cell count mean? Is there a risk of a Herx if I stop taking
it? I'm really bummed because things seemed to be going so well on the AP
and for all intents and purposes my AS seemed to be in remission. Now what
could happen?
My dosage of Minocin were 100mg a day and Arthrotec 75mg twice a day. I
also take 2 grams of vitamin C a day, 200 mcg of Selenium a day and
acidophilus/bifidus supplements.
Thanks In Advance,
Vermithrax

Re: Dr. Chiu's poll.............
I'm not sure if this is considered pigmentation or not. I've noticed (since
joining the group and reading about this pigmentation) that the tan on my arms
is very splotchy. This is not usual for me, I generally tan evenly. I'm on 300mg
Clindamycine every 2 weeks and 100mg doxy 3x a week. I avoid over-exposure to
the sun, as my doc advises I could develop an intensive rash, but did not
mention pigmentation.
The splotching doesn't hurt or bother me in any way, just looks kind of strange.
Joey

In response to Dr. Chiu's poll: Mino Lederle started April, 1999, MWF 200mg.
Vit C 1000mg daily. No sign of pigmentation. Is it too early to tell? By the
way, I've been taking Vit C for years. Was certainly glad to hear from those of
you who brave the sun while on minocycline. I've been staying out of the sun as
much as possible after being warned by Dr. Franco's staff. I had visions of
withering away like the wicked witch in the Wizard of Oz or something as equally
horrific. Now, thanks to you, I'm going to soak up some badly missed rays. But,
wouldn't you know that the weather changed today. Yesterday was sunny and
glorious but today we are having some "liquid sunshine" as we call rain here in
the Pacific Northwest. Tomorrow's another day and then there is always the next
tomorrow...
Since, I've only been on the AP for a couple of months, I'm holding off on the
testimony. But I do believe it will work for me and that one day I won't be
refilling the Rxs for Plaquenil and Prednisone. Thank goodness I'm down to
2-l/2mg every other day for the Prednisone. I read all the e-mails and have
learned a great deal. You are a wonderful group and a great support for me.
I'm not nearly so bad off as so many of you and can only marvel at your courage,
conviction and sense of humor. God bless you and as Geoff says, "Fight On!"
Sheila, Oregon, RA 2 years, AP 2 months

Hi Dr. Chiu. I am taking minocin, clindamycin IV and Vitamin C, with no
pigmentation. Emily

Dr.Chiu,
Can you please add Lodine (generic - Etodolac) to the database for
anti-inflammatories? Also - I am getting an error when trying to go to the
2nd page of the Health Questionaire.
Thank you!
Mark Holmes
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 just ordered some RA-SPES and thought I'd do some research before it
arrives. I realize PC-SPES is different. it's still interesting what one
can get out of "herbal" contents
http://www.psa-rising.com/medicalpike/pcspes.htm

When I posted to the group last night about my RA factor going from 200 to
800, I neglected to add that 4 weeks ago I had a depo-medrol 40 mg injection
and my first round of 5 day Clind Iv therapy that same week. Now the
depo-medrol lasts 2-3 weeks max- last week I had the blood tests showing the
elevated RA factor.
Since the shot and IV's my joints have been better than ever- yet my RA
factor shoots up so high. Does anyone have an explanation?
Carol*

i was diagnosed with RA November of 1998. Blessed by finding the web site with
the information re. Dr. Brown, I read up, refused to go on the steroids being
perscribed by my internal medicine doctor, (had the RA bouncing around in
me/flaring all over the place for 3 months) got him to perscribe the doxy and by
the time I got into the only rheumatologist covered under my HMO I'd been been
on the doxy for three months and it was getting things under control.
i now take 100mg twice a day -- take no other medicine (dropped the ibphrohen i
was taking for pain). i have minimal issues... my feet don't even hurt in the
morning.. just a bit of stiffness. I do have fatigue but i can deal with
that.... blood tests show i have RA but at the point of them taking it, it
hasn't been active.... If I drop below that level of doxy, I flare. I've also
cut most sugar out of my diet, drink only decaf coffee and water....
My question is -- are there long term effects of docycline? Has anyone been on
it a longggg time? My only side affects at the moment is feeling nausia in the
morning (i'm 47 and not pregnant). I take the doxy on an empty stomach (which
if you take it with food, it cuts the efficacy 50+%) with a couple of glasses of
water. I don't eat for appx. 1 - 1 1/2 hrs after I take it.
thanks for any info....
LN
(someone had an e-mail that said myno caused pigmentation issues.....small price
for no flares...)

I've been unsubscribed for some time and have just come back to see what's
happening. I've had sero-positive RA for nine years and have been on
minocycline for nearly two. I developed pigmentation on my legs early on in
my treatment, eventhough I take 1000 mg vit C daily. It resembles bruising
but the spots are never sore and do not fade. My doctor was at a lost as to
what these might be. From this group I learned that these spots are
probably minocycline induced pigmentation. This support group has been a
wealth of information. I have just learned that my low lymph count is
probably also drug induced. Still I have no complaints. My doctor thinks
I'm in remission and although I wouldn't go THAT far I am SO SO much
improved that I'm able to lead an almost normal life. Best of luck to all
of you, there is hope. Brenda RA 9 years AP 22 months

WEIZMANN INSTITUTE DISCOVERS GENE AGAINST AUTO-IMMUNE DISEASES
The gene responsible for creating a protein which could help block
auto-immune diseases such as rheumatic joint ailments, diabetes in the
young, and muscular dystrophy has been discovered at the Weizmann Institute
of Science in Rehovot, MA'ARIV reported. Auto-immune diseases result from
the body's immune system mistakenly attacking healthy, essential tissues,
thereby weakening the immune system. The gene discovered at the Institute
produced a protein called IL-18BP which prevents activity by another protein
called Interlaken 18, which causes inflammation in the body.
The protein IL-18BP was isolated and reproduced via genetic engineering.
It has worked successfully in mice and if it proves successful in humans as
well, it could form the basis for new medications preventing auto-immune
diseases and overcoming rejection of transplants without having side
effects.
The discovery was made by Dr. Daniel Novik and his research assistant Su
Hyun Kim, working under Professor Menachem Rubinstein of the Molecular
Genetics Division at the Institute.

ACID =3D4.4 , Hb=3D10 gm% .What is the treatment
weight . We have three children. one is five years

In article <ff12f67.24a2ffc7@...
I know that www.egroups.com has a facility to conduct online polls. I
think www.onelist.com has the same, but when I looked this morning, I
couldn't remember the password allocated to me so got no further.
-------
Regards, Dr Graham Chiu
Prospective Internet Observational Study in Arthritis
Home Page http://www.compkarori.com/arthritis/
Contribute at http://www.compkarori.com/arthritis/contrib.htm
Data Entry at http://www.compkarori.com/cgi-local/piosa.cgi

Dr. Chiu's question regarding pigmentation and Vit C came at time when I was
starting to put together my own questionnaire about it. I would appreciate
it VERY much if EVERYONE on minocycline would take a moment to answer the
following questions. Just cut and paste and send your answers to me and I
will put it all together and report back. I have extensive pigmentation and
don't do well on doxy. I know there has to be SOME type of causative
factor/common denominator with this.
Thanks in advance!! - Kim
PIGMENTATION QUESTIONNAIRE
1. Do you have pigmentation?
2. If yes, when did it start?
3. Are you on brand name Minocin or generic?
4. If generic, what company's?
5. What is your minocycline dosage?
6. How long have you been on minocycline?
7. Do you take Clindamycin (either IV or oral)?
8. If yes, how much and when did you start?
9. Do you take prednisone?
10. If yes, dosage and when did you start?
11. What other prescription medications do you take?
12. Do you regularly take ibuprofen?
13. Do you regularly take acetaminophen/Tylenol?
14. Do you regularly take sudafed?
15. What other over-the-counter medications do you take regularly?
16. Do you take acidophilus?
17. Do you take a B-vitamin complex?
18. Do you take St. John's Wort?
19. Do you take Gingko Biloba?
20. Do you take an antioxidant, if so, what kind (vit C etc)?
21. What other supplements do you take?
22. Do you consume caffeine regularly (coffee, chocolate, soda)?
23. What kind of diet do you eat (dairy/sugar restriction etc)?
24. Do you spend long periods exposed to cold (air conditioned building etc)?
25. What is your diagnosis?

I just got my latest RA factor blood test result. Greater than 80 is
positive. My test have always been around 185. It has been about 4 months
since my last test. This time the results were
rechecked on dilution wriiten at the bottom of the page. I am concerned as
this is such a big jump for me.
Has anyone else had numbers this high?
Thanks,
Carol*

Does anyone know if it has been proven that FOS (fructoligosacharides - I
think that's the wrong spelling) help only the good bacteria within the gut
and not the bad bacteria?
I read in one booklet that further research was needed here and I wondered if
anyone in the group knew any more about this.
Thanks,
Melanie.

Hi group........wanted to share this.
Yesterday evening, from about 6pm to midnight, I had a wonderful, unexpected
respite from some pain. Went like this: I reached up and scratched the back of
my head......big deal, huh? Yes, it was! I haven't been able to do that without
a great deal of pain for a very long time. Took me a few minutes to realize what
I had done, and lo and behold! both of my arms and shoulders had considerably
less pain and more range of motion. I was stunned! I gave my head such a good
scratching!!!!! And, I worked at the computer and folded a load of
laundry.......all without having to hug my arms into my body to avoid painful
movement. I could have cried, to tell the truth.
And later, when I showered, I was able to wash the back of my neck...and the
front of my neck, for that matter...and scrub my hair, and wash my feet, for
myself...........I don't have to tell you how great this was!
The down side.....I overdid it. Was much too zealous, and paid for it all night,
and today isn't much better. But, it happened once, and it's going to happen
again........frequently, I pray.
I'm curious..........how did getting better manifest itself for others? Am I
reading too much into these few hours of respite?
Wanting more...............Joey

Date: Wed, 23 Jun 1999 14:55:02 -0400
From: "Kellis Solomon & Denise O'Connor" <docsol@...
Hi,I have 3 bottles of East Park that are labeled oleuropein content
38%. So, this is false advertising, right. Wonder if they were
reported! What results are you all getting from the other brands?
Denise,
I don't know what to say about this. How did you get bottles that are
labeled 38% and I got them that are not even labeled and won't be.
Mine are from East Park Research Inc. 800-656-8687. Is this the same company?
I always felt that the olive leaf that I have been using gave me more
stamina, that was a big one at first, then after more reading and searching
I recognised the use for my immune dysregulation and that I needed it for
the opportunistic organisms that like me so much.. So when I learned that
I could get the 38% I was happy because I have always taken 4 of the 6% at
one time and then spaced through the day when I was fighting something
specific.
I think it is a good idea "buyer beware" however, I am totally bemused at
how you got a labeled bottle and me not, not one single bottle is labeled.
That is why now I wonder if this is the same company or a knock off. Be
real glad to hear from you if this is the same name and phone # Also the
address is Henderson NV on the invoice.
Stranger than fiction.
Susan
Light is "Living in God's Holy Thoughts."

hello everyone,
For those who are concerned with this potential problem, you can relax. It
is so rare for this to happen. If you have enough probiotics, you will keep
this from happening. If at one point you feel just a little gurgling in the
intestines, bring up the probiotic, you will be fine. As far as I know,
noone in this group had this and there are lots with intestinal problems ,
including myself.
If some have some loose stools, it can happen every now and then. The
probiotic should be increased. But when C.Difficile is happening, it is even
much worse than a food poisoning diarrhea.
Those who will embark on IV Clindamycin, it is a good idea to prepare
yourself with the probiotic before starting the therapy.
Hugs, Kathryn

Interesting report here from John Hopkins:
http://www.pslgroup.com/dg/4b3ea.htm
Those of you who have had a knee replacement may wish to take note.
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

Could you have yeast problems? Here's an online test you can take -
http://www.mall-net.com/cgibin/quiz4.cgi?quiz=crook.qa
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

Here is an even better link on C Diff -
http://www.springnet.com/ce/j807a.htm
Mark

Hi all,
This is just an encouraging note to let you all know that my tests are all
clear, ESR is 17 and I am feeling much stronger and able to cope with day
to day living. My case wasn't too bad but I'm sure it would have been if I
had gone on Metho etc. as my doc had originally suggested.
I've had RA since March 98 and started AP August 98. Joints involved were
couple of fingers, shoulders, wrists to a certain extent, knees, ankles and
two toes. Now there is a very slight deformity of one toe but the one that
makes long walking difficult is the left ankle.
I started on 100mg Minocin MWF, acidophilus, cod liver oil capsules,
magnesium tablet one every other day and a fresh clove of garlic, cut into
small pieces, and swallowed with water. Ofcourse lots and lots of water.
I've also started ginger tea with fresh mint leaves immersed in it for
liver function.
There is no doc here whom I could go to for AP treatment so I depended on
the excellent advice from Chris and Ethel and ofcourse the support group
whenever I needed help. I gained a lot of info just by reading up all the
mail.
Thanks a lot everyone and best wishes,
Zanash

Here's something interesting....
Title
Protection against minocycline pigment formation by ascorbic acid
(vitamin C).
Author
Bowles WH
Address
Baylor College of Dentistry, Texas A&M University System, Dallas, USA.
Source
J Esthet Dent, 10(4):182-6 1998
Abstract
Minocycline, a member of the tetracycline family of antibiotics, is
widely used in the treatment of acne. Its use has been associated with
intrinsic staining of adult human teeth, bones, and soft tissues. It
causes blackening of the thyroid glands in both animals and humans. It
has been determined that the pigment is the product of an oxidation
reaction. Laboratory studies have shown that the pigment formation can
be induced by exposure to ultraviolet light in the presence of air, and
that an antioxidant, such as ascorbic acid (vitamin C), can block its
formation. The present study was undertaken to determine whether the
antioxidant vitamin C could prevent the pigmentation of tissues of
laboratory rats given minocycline. Based on other studies, one group of
rats was given minocycline by stomach tube at a dose of 75 mg/kg/day, 5
days per week, for 6 weeks. A second experimental group was given the
same regimen of minocycline plus a supplement of ascorbic acid at a
level of 0.1% of the diet. A control group received no treatment at all;
all rats were maintained on laboratory rats chow and water ad libitum.
The rats were euthanized by carbon dioxide inhalation. Nasomaxillary
bones, including central incisors, and thyroid glands were removed and
fixed with 10% buffered formalin. Bones and teeth showed no gross signs
of staining and, therefore, were not processed further. Thyroid glands
were visibly darker in the minocycline group; specimens from all three
groups were processed histologically. Microscopic examination revealed
extensive deposits of black pigment throughout the follicles of the
minocycline group, whereas the group receiving both minocycline and
vitamin C showed no sign of pigmentation and were indistinguishable from
controls. It is suggested that patients on long-term minocycline
medication be monitored for thyroid function.
--
Now, a quick poll. Those of you who have not developed pigmentation,
are you on Vitamin C? Those of you who have developed, are you on
Vitamin C?
-------
Regards, Dr Graham Chiu
Prospective Internet Observational Study in Arthritis
Home Page http://www.compkarori.com/arthritis/
Contribute at http://www.compkarori.com/arthritis/contrib.htm
Data Entry at http://www.compkarori.com/cgi-local/piosa.cgi

I was wondering if anyone from our group has ever gotten C.Difficile from
Clind. IV therapy?
Thanks,
Carol*

questions about the antibiotic protocol please ask on the "rheumatic" onelist
group. Have Fun!

Well, I saw an infectious disease doctor today to have what I thought was
oral yeast looked at.He doesn't think its oral yeast at all.However he did
culture my tongue anyway.He advised me to see an ENT and a dermatologist.He
feels it would be beneficila to have a tongue biopsy done and and endoscopy.I
have a hard patch of skin on my buttock that he feels should be biopsied
too.We talked about the minocin and he wasn't in objection to that and had
heard of it.However,He was dead set against using the clindamycin IV due to
the risk of C diff.Anyway, I'm a little upset and worried now.I'll let you
know what happens.
Joanie

Dear fellow rheumy's,
I got the order of olive leaf extract from the East Park Co. yesterday and
read the label.
All it says is that it has 500 mgms of Olive Leaf Extract. Nothing about
the % of Oleuropein.
I called today, they said that they don't put the percentage on because
they are changing all the time and it might me 40 % tomorrow and then they
would have to change labeling. They also said that the product I currently
use (Dee Cee Labs) could have 8% or 10% , that they are just saying for
sure it has 6%. Read on, this is crazy.
Then he said that the real active ingredient that does the work is calcium
alenolate. This ingredient is not on the the label either. I also knew
this from research.
I told them that I already buy an Olive leaf extract from another Co that
is standarized to 6% Oleuropein and is 500 mgms and so stated on the label.
East Park said that anyone could put that on the label that doesn't mean it
is there. He said they are trying to re educate the public about what
works in the Olive Leaf. As if I had never read and studied and researched
this for 2 years and have been using the other brand which I get 30 caps
standarized to 6% LABELED for $6.00 a bottle. That is a wholesale price for
buying 6 at a time. It is from Dee Cee Labs.
Then he said Olive leaf extract is just that and tried to muddy the waters
of our conversation, which was civil, with just how many things are in it.
Of course I already knew that or I wouldn't have been taking it.
Now he says that they aren't guaranteeing how much of anything is in there,
but they are guaranteeing that it works.
Then I said there is nothing on this label saying that there is any
oleuropein in this at all let alone the percentage. Then after the Calcium
alenolate piece of the conversation I finally said that I don't take meds
or supplements that are not labeled properly about what is in the product.
Do any of you take pills from bottles that don't say what it is???? Or do
you take something that says it is one thing but that ingredient is not on
the label???? Do you look at the label to make sure what you are doing
before you take something????
Well, he said labeling is not that important. I said, "Oh yes it is to the
consumer --ME!!! I said I just spent $22.00 a bottle for a case of this
and I have no idea what is in it except that it has 500 mgm of Olive Leaf
extract--period. The very same thing the Product I am using has on the
label along with the standardized amount of Oleuropein.
All during the conversation he kept saying well it was up to me, he
couldn't make the decision for me. So when I finally said that I wasn't
feeling safe about this labeling and it would probably be a good idea if I
returned the unused bottles and got a refund. Then he said I would have to
get the product back to them as they do not do product pick up. I said I
am disabled and unable to drive and live far away from town and he restated
that they wouldn't pick it up. I depend on UPS a lot!!!!
Anyway I said that I didn't think that I wanted to return it because then I
couldn't be sure I would get the money back, whereas if they picked it up,
they would be sure of getting product and I would have a record again. No,
no, no, they wouldn't do that. So there you have it over $200.00 and here
I am with all this product which may not even have 6% that my other one
does at over 3x the price.
This has been an expensive lesson for me. I think it is false advertising,
misrepresenting and labeling problems. I really want to believe that this
is what they CLAIM it is, but what do you think without proper labeling???
I would appreciate any comments about this and any other people that may
have contacted them. I don't think I am being difficult. I was NICE. I
ended with I am sorry that you don't have the confidence to label your
product properly. Thank you very much.
Susan
Light is "Living in God's Holy Thoughts."

Hello All,
I've been in casts and on crutches several times, but I am fortunate in
never having had to use a wheel chair, so I can only imagine how difficult
that is. I don't really understand the strange attitudes and reactions some
have experienced from their chairs, but I do remember growing up in a
culture struggling with how to treat the handicapped -- of course, back then
the term was crippled. The first thing we learned was not to stare at these
unfortunate folks; the next thing we learned was to use the term handicapped
rather than crippled, and, before long, the politically correct term was
changed to physically challenged (I'm not certain what's "correct" now);
next we learned that these physically challenged folks were offended if
anybody assumed they needed help and attempted to open doors, push the
chair, etc.. We were also told that we should not question the person about
their problem or call attention to their difference in any way. I think
many people, confused that normal human courtesy and concern was being
interpreted as rudeness, gave up and decided to simply ignore the whole
issue and thus the people involved. I am sure there are some truly unkind,
rude, idiotic folks out there, but I suspect that most are not intentionally
being cruel but are simply at a loss for how to behave in "politically
correct" fashion.
Kari

Hi!
I am new to this - just started taking the antibiotic on April 21 - I am doing
not too bad - stiffness in hands and wrists and in the knees but I am going to
stay with it. What I am looking for now is the name of a doctor in the Ottawa
area with whom my GP can talk about the treatment. My doc is marveleous but
since I am the first person on this teraphy he would like to find someone he
could talk to about this treatment. Any ideas? Merci.
Mado

http://www.mtio.com/mclfa/lfalt1.htm#no3
There are some other links to lab tests on the supportlinks page 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

Hi Gang! Geoff Crenshaw here.
Penning the response to KJ Studer using the battle metaphor got me to
thinking, do I - do YOU, approach your disease from that perspective? I
know we tend to dismiss a war that is not seen, but does that make it
somehow less of a war? We dismiss death not felt, but those involved are
just as dead. Are these things somehow dimished because they occur in
another nation, on a school ground, or under a microscope? I think not.
For me considering this disease in that light, a war with the death of
my troops (cells) and ultimately my nation (life) at stake brings a much
more serious and dedicated state of mind to the table. No longer is a
"strict diet" hard to deal with, no longer are offensive medicos, errant
advise, and charlatans to be laughed off. No longer is the disease
something to "manage".
Wars are to be avoided, but if inevitable, they should be fought to won,
not "politely managed". I for one intend to win this one and will not be
passive, polite, nor politic. Ultimately in my war, as in yours, there
is only one victim buried - me. I do not intend to visit a pine box,
broken crippled nor crumpled due to this disease. I hope you will FIGHT
your war too.
--
Regards,
Geoff Crenshaw, ACC

Dear group,
My new private email is cadlard@.... cadlard@... is now
dead.
You'll probably see most emails from this one, my work email, as I try to
answer messages in my tea and lunch breaks so that I get a rest from
computers in the evening :)
Thanks to Geoff and Sarah for their help with the web page. I've stripped
out the Composer excess rubbish from some of the pages and will finish the
rest soon. I've used your smaller buttons Sarah and will put in the smaller
graphic for the background shortly. I took out the "nosave"s as you
suggested Geoff and will look at your other suggestions too.
Sorry about the logo and signoff on my work emails- they're compulsory and
I can't take off the logo. I'll try to remember to take off the signature.
I work for a US firm by the way :)
It's dark here and I'm still at work so I'm going to go home,
Chris.

Hello Everyone! I just got my lab results back after my
first 2 weeks on mtx. I'll hear back from my doctor
tomorrow but I was just wondering if anyone could answer
this question for me while I'm waiting for his call.
On the lab report is states that the range for platelets is
150,000 to 450,000. On 6/1/99 my Platelet count was
521,000. On 6/21/99 my count was 537,000.
What does platelet count indicate? It looks like mine is
higher than it should be but I don't know what that means to
me. What a learning process this is!!!

Lisbeth asked that I share a change of address with those who write to her.
She has not moved physically, but they changed the number and street. It is
65/2 Pohutukawa St. All else remains the same. She is excited about
going to see her son!
janet in tulsa

Hello everyone,
Yup, I am still hanging around, actually it was a very eventful day. Quite
tiring, but some new things have come through.
First things first, I had two IV's back to back. One vitamins and minerals,
the other amino acids. I had decided to take on another dose since the last
time I felt good from it.
My doctor sent a letter on my condition to the insurance company, so as to
try and get them to aproove payment on what I need. She put it really to the
point:
-my diagnosis
-my severe allergies, especially to foods
-the possibility of what could happen if I landed again in the hospital
since they have caused me frequent anaphylactic shocks
-my weight being 75lbs. which is urgent to get things going quick as to not
give any chance for the heart to go out of whack
-she felt that she found this difficult to accept that there is medical
procedures there to help me and that if it would not be given to me, I would
definitely die.
I think that put it really to the point.
So, the insurance company got off their fanny and aprooved the IV's that I
need to help me get to a more decent level. We are just waiting the aprooval
now for a private nurse at home which should come in soon.
As for my lungs, I will continue to take oxygen at home and do inhalation
therapy. It makes such a nice decor in my living room .LOL
We talked about several antibiotics to add to the Clindamycin. We were both
disappointed that I had a respiratory allergic reaction to Cipro. What I
asked was to see if we could desensitize me to it and that I would be able
to take it after. So, that is the plan, we will do a full day of allergy
testing for Cipro and when we find the level where I react less severely, it
will be used to make an antiallergic injection before taking the Cipro.
First we will boost with vitamins and minerals, then desensitize. If that
doesn't pan out Biaxin or flagyl will be the next on the list.
We will be trying to help the ulcers in the intestines with a few different
items.
I will also have to be monitored for thyroid for which will pass a new test
since I have the feeling something is going on there, that would most
probably be caused by my tegretol.
I also met an nuerosurgeon yesterday and discussed having brain surgery to
get rid of my trigeminal neuralgia since my therapeutic levels are falling
which could lead me to a crisis. He is not to enthusiastic about it since I
am a complicated case, lots of conditions to deal with.
Finally, things are rolling along just fine for my court case I won.Money
will be knocking at my doorstep soon.(Can't wait!)
Well, that's it for tonight, I am all tuckered out...
Hugs to all, Kathryn

Hi Group,
These stories had me LOL and really cheered up my day. Hope they do the same
for you.
Sheila Wight, Oregon RA 2 years, AP 2 months
WHY AMERICANS SHOULD NEVER BE ALLOWED TO TRAVEL
"I had someone ask for an aisle seat so that their hair wouldn't
get messed up by being near the window."
"A client called in inquiring about a package
to Hawaii. After going over all the cost info, she asked,
"Would it be cheaper to fly to California and then take the train to
Hawaii?"
"I got a call from a woman who wanted to go to Capetown. I
started to explain the length of the flight and the passport
information when she interrupted me with "I'm not trying to make
you look stupid, but Capetown is in Massachusetts.
"Without trying to make her look like the stupid one, I calmly
explained,
"Capecod is in Massachusetts, Capetown is in Africa." Her response ...
click."
A man called, furious about a Florida package we did. I asked
what was wrong with the vacation in Orlando.
He said he was expecting an ocean-view room. I tried to
explain that is not possible since Orlando is in the middle of the
state. He replied, "Don't lie to me. I looked on the map and
Florida is a very thin state."
I got a call from a man who asked, "Is it possible to see England
from Canada?" I said, "No." He said "But they
look so close on the map."
"Another man called and asked if he could rent
a car in Dallas. When I pulled up the reservation, I noticed he
had a 1-hour lay-over in Dallas. When I asked him why he
wanted to rent a car, he said, "I heard Dallas was a big airport, and I
need a
car to drive between the gates to save time."
A nice lady just called. She needed to know how it was possible
that her flight from Detroit left at 8:20am and got into Chicago
at 8:33am. I tried to explain that Michigan was an hour ahead of
llinois, but she could not understand the concept of time zones.
Finally I told her the plane went very fast, and she bought that!
A woman called and asked, "Do airlines put your physical description on
your bag so they know who's
luggage belongs to who?" I said, "No, why do you ask?" She replied,
"Well, when I
checked in with the airline, they put a tag on my luggage that
said FAT, and I'm overweight, is there any connection?" After
putting her on hold while I "looked into it" ( I was actually laughing)
I
came back and explained the city code for Fresno is FAT, and that the
airline was just putting a destination tag on her luggage.
I just got off the phone with a man who asked, "How do I know
which plane to get on?" I asked him what exactly he meant, which
he replied,"I was told my flight number is 823, but none of these
darn planes have numbers on them.
"A woman called and said, "I need to fly to Pepsi-cola on one of
those computer planes." I asked if she meant
to fly to Pensacola on a commuter plane. She said, "Yeah,
whatever."
A business man called and had a question about
the documents he needed in order to fly to China. After a
lengthy discussion about passports, I reminded him he needed a visa.
"Oh no I don't, I've been to China many times and never had to have
one of those." I double checked and sure enough, his stay required a
visa. When I told him this he said, "Look, I've been to China four
times and
every time they have accepted my American Express."
A woman called to make reservations, "I want to go from Chicago
to Hippopotamus, New York" The agent was at a loss for words.
Finally, the agent: "Are you sure that's the name of the town?"
"Yes, what flights do you have?" replied the customer. After some
searching, the agent came back with, "I'm sorry, ma'am,
I've looked up every airport code in the country and can't find a
Hippopotamus anywhere." The customer retorted, "Oh don't be silly.
Everyone knows where it is. Check your map!" The agent scoured a map
of the state of New York and finally offered, "You don't mean
Buffalo, do you?" "That's it! I knew it was a big animal!"

Hi group...........help please. I cannot find the Road Back site that has the
case historys. I want to print some of them to show my doctor. (I can find the
RB site, just not the rest!)
Thanx, Joey

Hello everyone, my name is Thomas
I'm a newbie to this list and have decided to jump in and get my feet
wet.
I was diagnosed with Reiters Syndrome about 5 years ago and have been on
the AP for almost 4 years now.
Initially I went through the usual treatments, Prednizone,
Sulphasalazine, Methotrexate, Plaquinil, Sandimue, and a host of others,
with little success.
Once I was introduced to the AP, I improved dramatically. My arthritis
retreated from my jaw, neck, back, hips, knees, and made a last stand in
my feet, where it has remained, entrenched for about 2.5 years.
I moved to Vancouver about 2 years ago and was unable to continue with
my periodic IV treatments. The new Dr.s here did not believe that the IV
Clindamyacin therapy was necessary to the treatment. After insistng,
they agreed to prescribe oral Clindamyacin as a substitute.
I'm currently on Doxycycline (200 mg/day) and Indomethacin (100 mg/day)
as well as Misoprostol (400mg/day). Every three months I would shock my
system with 1800 mg of Clindamyacin per day for 5 days.
I have noticed over the past 8 to 12 months that my arthritis has slowly
been seeking out its old haunts in my body and has discovered a few new
places to infest.
I am pushing to re-instate the IV therapy hoping that it will subdue
this new arthritis attack.
Does anyone know of any studies or articles that validate the IV
treatment for Reactive arthritis?
Any comments, opinions, or suggestions are welcome.

I love the responses to the people who bug us about wheelchairs and parking,
etc.. I needed a great laugh and you provided it. Thanks for sharing. I plan
to try them out the next time I'm hassled.
Hugs and LOL,
Jani

Hi Gang, I wanted to know; if any one here has had hip replacement
surgery. I'm really starting to consider this surgery since I'm feeling
strong enough to do it and I just found out from my insurance that since
I've spent so much money this year I' m almost close to my deductible.
If I have both of them done before the year is up I will only pay
$1,008.00 out of pocket after that the remainder will be covered 100%.
What a deal!!! I think I should go for it. Please help me with any info
available.
Thanks SOOOOO much , Yoly
How do you like the results?
Are you glad you did it?.
How old were you when you had it done ?
How long have you had them?
How long did it take to recover?
Has your pain gone away after replacement?
Is your replacement put in with cement or the kind the bone grows
into?
Do you have any regrets?
Please give any advise that you can.
Tell me your story and why you had to have it done.

I am experiencing something that is new to me and wonder if anyone here has had
the same thing happen to them. I am in a flare, and over the last couple of
days, one of the mcp joints in my hand which has been really swollen (about 3x
normal size) is starting to come down a bit, but it seems that as the joint
itself shrinks, the swelling in the tissues, tendons, etc. around the joint is
increasing, and the tendon looks really crooked and swollen and pushed off to
one side of the joint. The surrounding tissues are raised up above the level of
the joint now, so that it looks depressed in the center. I am going to see my
doc about it as soon as I can get someone to look after the kids, but in the
meantime wonder what is going on in there. There is little pain, but the joint
is stiff and won't bend through the full range of motion. Anyone ever experience
something like this? Liz G

This just borrowed from Ray's post...
For more information on these Mild HBOT chambers go to:
http://www.hyperoxy.com
The minimum chamber setting requirements for therapeutic benefit is:
1- setting of 5 PSI.
2- addition of pure oxygen at the rate
of 5 liters per minute.
Clinics & Fitness Centers That Offer Hyperbaric Oxygen Therapy address:
http://www.hyperoxy.com/clinics/index.html

Hi Everybody! Geoff Crenshaw here.
This just in from Ray Barrett...

http://www.sunnybrook.on.ca/~elfstrom/arthritis/articles/appointments.html
The site of an arthritis patient with tips on Dr appointments like keeping logs
and how to talk to your doctor.

Hello everyone,
Yes, another time to go to Ottawa. I shall be doing some intravenous therapy
for vitamins and minerals since I am in desperate need of that. I will be
also having a good long talk with my doctor, we shall see about trying to
add another antibiotic with clindamycin.
I have been suffering some pretty intense allergies lately and have to watch
the lungs closely. I shall do my best to not fall on the floor( LOL).
Hugs to all, Kathryn

Hi Dr. Chiu and everyone,
After almost two years of symptoms, I have now been diagnosed with RA by a
new rheumatologist - Professor Graeme Carroll. Thanks to our Dr. Chiu,
this is no new news for me as he was the first one to pick up on my
symptoms. Congratulations and thanks Dr. Chiu, both for your initial
diagnosis and for giving me the chance to be a member of Piosa.
One of the things which helped his diagnosis was my monthly diary which I
update in Piosa every month or so. I had printed it off and attached it
with my Xrays and copies of blood tests etc and Prof. Carroll was able to
follow the ups and downs of the last 2 or so years. So for all you who are
not a member of Piosa, or are not keeping a diary etc., if you haven't been
diagnosed, - start one today. It really helps the rheumy to track the
disease. I had also kept a record of all my blood tests in a file in
Excel, with a graph of the ESR and RF which he found very easy to read and
track the progression of these readings.
He was, however, quite surprised to find that I had no bone erosions and
that I had been on Minocyclene for the last 2 yrs. In fact he has ordered
me to keep on with the Mino and the Myocrisin and under no circumstances am
I allowed to go off of it (the Minocyclene). This is great news for me as
I had told him I only took naprosyn and prednisilone when in a flare.
Dr. Chiu, although the RA has begun to get worse, the Minocyclene was the
only real drug which I had been taking all the time, even when the first
rheumy diagnosed Osteo. The benefits have far outweighed the negatives
like thrush - I've never had it with the Mino :) And there is still no
serious joint damage!!
So, for our Antibiotic Protocol, the group, Dr. Chiu, Ethel, Chris and many
many others, I say a great big "THANK YOU" as it was your help, prayers and
support that kept me going with the antibiotics and therefore have saved me
years of pain and suffering.
Love and hugs to all,
Judy Knee

Grp:
Back in January I was at Dr. Franco's for my RA and he tested me for Candida.
My results were negative. I had a terrible yeast infection at the time- per
cultures done by my GYN.
I have never pursued this with Dr F- but have always wondered how my test
could be negative? I have CHRONIC yeast before the AP and present!!
Any ideas?
Thanks,
Carol*

I would like more information on this. Is it the doctors latest
explanation for minocycline showing results or is there some definite
proof and studies to show it. If it is an immune suppressant then how
does this fit in with the tetracycline's working on rheumatic disease
and why would the other kinds also have shown results. Did Doctor Brown
think it was an immune suppressant? Lately it appears to me that the AP
is being discounted everywhere, even here.
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 noticed the link to the patent on olive leaf mentioned 30-40% by weight of
oleuropein - is that the same as "standardized to 30-40%"? I'm curious as
most of what I find in health food stores is standardized to 6%, although I
finally found a bottle of 12% made by Nature's Way, which I've been taking.
If you find out any more info on this, I would be interested.
Also, after reading the book, you would almost believe everyone had systemic
yeast and what I found most interesting is that it seemed to me that
antibiotics were the biggest cause of it. So taking olive leaf seems to me
to be something that will help overcome the bad side effects of antibotics.
Geez, and I thought metho and the others were supposed to be the bad guys.
No wonder my docs tell me that antibiotics don't come without surplus
baggage as well. I guess it is a matter of whether you want yeast or
whether you want your immune system suppressed some - interesting choice.
I know I sound rather negative, but this kind of irritates me a tad as when
I signed up to believe in Dr. Brown's theories, I got the impression that
minocycline was the lesser of all the evils - now I find out that I need to
overcome these yeast symptoms (which I guess are manifesting themselves in
me as RA, cause I sure don't seem to have any other sign of a yeast problem
that I would recognize). And systemic yeast sounds like something you don't
want to have!
So did Dr. Brown go on the assumption that everyone had yeast and how did he
treat for that? I don't recall him mentioning it a whole lot in his book.
Apparently he had success without worrying about it .
Somehow I sense all these issues are making this whole "cure thing" a pretty
confusing mess.
Is it only me or is anyone else a bit confused about all these issues?
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day;Zone Diet
(-12 lbs!); olive leaf
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html

Dr. Chiu, do you know what is happening to the body when a person
experiences dry mouth side effect from Minocin? If after three months
all other response to the drug were positive and blood tests fine, would
you take a person off the drug just because of dry mouth? (My apologies
if this is an out-of-bounds question. Just let me know you can't answer
it.) This was not the case with me, but I'm hoping to be able to take
Minocin again and anticipate that the dry mouth will be back.

This is my understanding of our conversation. I've been known to get
things wrong before. (Why do you supppose my husband is rolling his
eyes?)
I think Dr. T still believes in Minocin. I need to put the statement in
context. We were involved in a battle of wills: I wanted him to
prescribe Doxycycline because of my wonderful but painful reaction to
Minocin. He refused, explaining how people with sensitivities to
penicillin can not take ampicillian (I think I got that drug right, but
don't quote me), a sister drug. Ergo, if I can't take Minocin, I
couldn't take Doxy. I couldn't argue against this because I didn't know
of anyone who'd had to make the transition. That's why I asked the
question here -- and have found that at least two of you have switched
from Minocin to Doxy successfully. (My husband thinks he is being extra
cautious with me because I have had this weird response to Minocin, one
he has never seen before. Can't blame him for being extra careful.)
He wanted me to go on to Plaquenil. I refused because I see it as a
drug
to suppress symptoms, not address the problem of mycoplasma. His
argument
back was that the latest findings are that mycoplasma is probably a
contaminent that gets into samples because it is everywhere. So the
success
of Minocin is probably not based on killing mycoplasma anymore than
Planquenil
is, so why not take Planquenil.
I think I've presented it correctly, but then, one of my favorite poems
is "My Misunderstandings".

Dear Group:
I actually walked a very large flea market Saturday and also a large
antique sale that was set up in downtown Hendersonville, NC.
I haven't walked a flea market in about 3 years. I use a motorized
cart. I did double up on some meds Saturday night but that was
preventative, to keep Sunday from being a bad day. I'm a little sore
but heck I found some really great things and I love junking.
Judy in SC
RA 42 yrs., Fibro 17 yrs., AP 2 yrs

Eight glasses. I weigh 110 so it's one more than I need, I've been
told.

Yes, Yoly. I've had an ultrasound of the whole shooting match:
gallbladder, pancreas, kidneys, liver -- anything they consider in the
abdomenal cavity.

Did you mean switch to Doxy? I've been on Minocin.

Hi Maria,
Yes. Just about everything we discuss is true for all the diseases. Dr.
Brown 'lumped' them all into the same category and treated all alike.
Chris.
Ethel and group,
Are these points true for all diseases that we're working with
(Dermatomyositis, Scleroderma, etc., too?) or just RA?
Thanks,
Maria
In a message dated 6/19/99 8:04:29 AM Eastern Daylight Time,
kglg@...
writes:
<< Below is what Ethel said to help differentiate flares from herxes.
Ethel

I have been told to eat as much natural salt (from the Grain & Salt
Society) as is tasty. Stop when it is salty. I use a lot. Cortisol
production is 4 out of 0-50 scale (24 hr. urine test). The pain is not
localized. A long time ago I had a kidney infection. The doctor tapped
the kidneys and I nearly hit the ceiling. This pain is dull, achey, but
gets so bad I can not sleep; standing, sitting, lying down become
endurance tests. I understand the pain gets deferred, so I can't
pinpoint it. Sometimes it feels as though the source is the adrenals.
Sometimes, the kidneys.

Group,
A couple of years ago I had a sinus infection and pneumonia. My Dr. prescribed a
4 day course of Zithromax. It worked very well, knocked down the infection and I
got better quickly. When Skip took the Zithro it all but knocked her down.
Leslie had the same reaction to it as Skip--- but I didn't. Neither did anybody
else I found that has taken it--unless they have RA. According to the
manufacturers paperwork Zithro is effective against a broad range of bacteria,
including mycobacteria. Maybe it isn't Mycobacteria that causes RA and other
rheumatic diseases but whatever it is it sure doesn't like Zithromax. Perhap
some in the medical community should put less effort into disputing Dr. Brown's
work and more effort into finding out why a potent antibacterial knocks people
with RA on their butts. It sure makes me curious as to why it does. Any
thoughts???
Denny

I have found out from a psychopharmacologist I know that SAM, also known as
SAM-e is a very effective antidepressant for some. It also is used to treat
osteo-arthritis. The brands he suggests are Solgar and Naures Made. The
suggested dose in one 200 mg tablet the first week, and two a day the second
week.
Perhaps some of you might want to try/research it.
Good luck.
Susan

Dr. Chiu wrote:
"Methotrexate in low doses may not be immunosupressant but anti-
inflammatory. It is immunosuppressant in high doses."
Can you tell me what would be a low dosage amt of metho to start with,
should I decide to try that as an "anti-inflammatory" and at what point the
dosage turns into an "immunosupressant"?
Thanks,
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day;Zone Diet;
Olive Leaf Extract
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html

Joey,
My wife, Skip, started Zithro a couple of months ago and if Herxs' are a sign
its working, it is pretty powerful. Our Dr. wrote the prescription for 500mg.
twice a week. She took 250 mg. twice a week and it really knocked her for a
loop. Pain and swelling start approximately 12 hrs after she takes the pill and
lasts for a couple of days. If you get a Dr. to write the prescription -- start
slowly!!
Denny and Skip
RA 11 yrs.
AP 10 months

Hi group...............I've been sitting on a peeve for a few days, thinking if
enough time passes I'll get over it. Not working.
Here's the thing. I only use my wheelchair when I go out. My friends/family are
cool with this. Strangers are another story. It seems that one must have a
visible reason for being in a chair - a cast on a broken leg, a neck brace,
extreme old age - RA doesn't fall under any of the "accepted" catagories(which
is fine with me, but apparently not for everyone).
Now, I can put up with a lot, but something happens to me when I'm treated like
my IQ drops to my shoe size when I get in the chair. People either yell at me
(because obviously I cannot hear if I'm in a chair), treat me like a child and
pat me on the head (because obviously children like to be patted), sympathize
with me ...."I know just how you feel" (because obviously they DON'T have a
clue), use me as an example to the downside of everything from "getting old" to
not taking "care" of myself (one woman in a grocery store pointed me out to her
3 or 4 year old and said "this is what we can expect when we get old "....I'm
55), or I am flat out ignored. I've had people talk over me, around me, through
me......but not to me. Even when I ask the questions etc, they respond to the
person with me. Hello...what's going on, am I invisible?
Well, I know it's my responsibility to educate - how can they know if no one
tells them................however, I am not always the most subtle person, and
when pushed enough I do tend to get defensive. I swear, one day - for the pure
hell of it - I'm going to start drooling, or picking my nose.......give them
what they expect.
'Course, this is no solution..................how do others deal with this? I
know I'm not the only one treated this way. Any comments will be appreciated.
Didn't mean to rattle on so...............Joey

To Our Experts, and All,
Is it true that if someone on the AP stops the antibiotics for awhile, then
begins on them again, that they may not be as effective for them as before? Has
this happened to anyone in the group? Just heard something about it and was
wondering if it is so. Liz G

Afternoon group..............I have a few questions.
1) Should I take my doxy with or without food? Every time I fill my
prescription, the label says something different. My pharmacist says it doesn't
matter. I'm confused and would like to be certain of the best absorption.
Suggestions?
2) My fingers are beginning to do this weird thing - pulling to the left.
Uncomfortable and unsightly. With remission, does this condition correct itself
if it hasn't progressed to badly? Also, any suggestions for hand exercises (that
might be different than what I'm familiar with) would be appreciated.
Thanx...........Joey

Dear Kathryn and Group,
In my local newspaper today I noticed a "thank you" advertisement
concerning donations made to the Knights Community Hospital Equipment
Loan Program. This group is made up of members of the Knights of
Columbus, a Catholic organization. (I'm sure you do not have to be
Catholic to benefit from their generosity.) What they do is "provide
durable medical equipment to people who cannot afford to rent, own or do
not qualify for state or federal assistance."
It might be a place to look for those who need wheelchairs for a
while......remember our good friend Janine who drops into the group
every now and then? She was able to give up her "Harley" as she called
her wheelchair, after the AP greatly improved her quality of life! :-)
take care,
Connie dermatomyositis Aug96 AP Feb 98.......and 85% improved
:-)

Has anyone here had any experience with using Cat's Claw as an
anti-inflammatory? Liz G

hi to al mostly fathers HAPPY FATHER AND GRAMPA DAY to all MAY GOD BE WITH US
ALL
dr, for operatin on fingers i have not call one yet, but ill try what have i
got to lose, having three deases i must be doing good iam on the go go the
DR SAID see ya 6 MONTHS wow every 2 for blood work well iam feeling
good, stupid fingers ill take ant imfo ramration, did you ever exise
or is it too late half bent fingers, i want them to be STREIGHT, oh well
you all have a good day anyone on scl. ra. ray. i do know whats the pain is,
MARIE FROM MAINE

Dry Mouth is a listed side effect of Minocin. Does anyone know what
that is? I mean,
if you have that side effect does it mean you are peeing too much and
are getting dehydrated, or does it mean water is being pulled from your
kidneys to your stomach? In other words, why does your mouth get dry?
And, is anyone taking Minocin regardless of the side effect? I took
Minocin for three
months and experienced dry mouth the whole time, but it was a small
price to pay for
the benefit. Anyone a long-term user with Dry Mouth?

Does anyone have Candida and RA? I'd like to hear your story, if you
don't mind.

Evening group..........where can I get information on Zithromax, and what has
been the success rate using this drug?
Thanx.......Joey

Just wanted to pass on some more encouraging news for AP.
I have a still undiagnosed inflammatory arthritis, NIH docs
refer to me as a Tissue Type 2, 6 joint polyarthritic...isn't
that attractive! Suspected Psoriatic Arthritis, however.
Anyway, I haven't had any labs done recently, but just last
week I was telling my husband that my arthritis (knees, wrist,
and elbows) had given new meaning to the pre-spanking saying that
this will "hurt me more that it will hurt you!!!"
But tonight, I was giving my littles ones a late night bath, and
I actually knelt down on both knees at the tub...without
even thinking. I was so surprised once I was down there.
Actually I was overcome with fear that I would not
be able to rise again as I would have to push off with
my oh so sensitve wrists! But, I was able to get up as well!
I have forgotten to take my anti-inflammatories a couple
of times as well!
I still have a ways to go, but I am very encouraged by
my regained movement/flexibility. I pray that if I encounter my
two steps backward, they are baby steps!
Alana
Onset 9/98
AP Start 2/99

New Research On COX-2
Dateline: 06/03/99
A report in the June issue of Nature Medicine points to new information
about the role of COX-2 in the inflammation process.
Paul Colville-Nash and colleagues at the William Harvey Research
Institute in London report that a new study of lung inflammation in rats
indicates that the COX-2 enzyme (cyclooxygenase 2) may have
anti-inflammatory properties which occur later in the inflammation
process.
By blocking the COX-2 enzyme, inflammation may be ultimately prolonged,
which is contrary to the intent of COX-2 inhibitors such as Celebrex and
Vioxx.
Celebrex and Vioxx are two recently approved COX-2 inhibitors and many
more are in development.
They are collectively nicknamed "super-aspirins" and were developed
after it was discovered that two types of COX exist, COX-1 and COX-2. It
is COX-2 which is associated with pain and inflammation. COX-1 has a
more extensive role including protection of the gastrointestinal lining.
When the selective COX-2 inhibitors were developed it was exciting news
since it was thought that finally a drug was developed which would
decrease inflammation yet have much less potential to damage the
gastrointestinal tract.
The latest findings though from Colville-Nash and colleagues indicate
that COX-2 is associated with an inflammatory reaction during the early
phase of an inflammatory response (at about 2 hours). However later in
the inflammatory process a swell of COX-2 exists which has been shown to
have anti-inflammatory effects in the studied rats. While the new COX-2
inhibitors and older NSAIDS serve to interrupt inflammation early on, it
appears they may serve to aggravate inflammation later on.
This may also help explain why older NSAIDS, although having
anti-inflammatory properties, fall short of stopping disease
progression.
The new findings may contribute important concepts towards better use of
COX-2 inhibitors and NSAIDS. It may be found that continuous use of
these drugs may not be the best application but rather reducing their
use at times may enhance their efficacy. It need also be realized that
conclusions may not directly apply to humans since the study involved
lung inflammation in rats, not joint inflammation in humans. A
correlation must be made implementing human clinical trials.
REFERENCES:

Hello Group,
I tried to do an experiment in not taking Daypro for the weekend, and didn't
take it Friday or Saturday morning as I usually do. By tonight (Saturday
night) I broke down and took a Naproxen because I'm really starting to hurt.
Obviously it is too early for me to quit the NSAIDs, but does it mean that
the Minocin isn't working as well as I'd thought and the Daypro is actually
responsible for the great improvement I've experienced?
I'd appreciate thoughts on this one.
Thanks,
Kari

Ethel and group,
Are these points true for all diseases that we're working with
(Dermatomyositis, Scleroderma, etc., too?) or just RA?
Thanks,
Maria
In a message dated 6/19/99 8:04:29 AM Eastern Daylight Time, kglg@...
writes:
<< Below is what Ethel said to help differentiate flares from herxes.
Ethel

To everyone that e-mailed the helps about Social Security that I needed, thanks
so much. I know
it is a long process; I am going to begin. The pain and agony is getting out of
hand. I travel to schools and homes and work with kids who are challenged
emotionally. Now working with the kids is not a problem. It is the walking to
school, the out of breath, the hurting in my joints; the pain sometimes is
unbearable; well, you all know. If I sit at a job (desk) my feet swell; it
hurts to type with RA
finger/joints. Anyway, I will let you know how all of this goes on the
journey...
Liz G thanks for the rest ministries.org website, nice; and very emotionally
uplifting as well as spiritually. Great information all of you sent; you are
a great group well, that is why support is in our
name, support group -- doing a superb work/job to help all of us. Martha

Just received this link for the site of a non-profit Christian group for people
with chronic illnesses, there is a good collection of links on disability if you
click on the "Links" about halfway down on the left. Liz G
http://www.restministries.org/

Hi Pierre & everyone! Geoff Crenshaw here.
Thanks for the response. I wanted to clarify a point, and then raise a
new, but related topic. This is not to argue with you, Pierre, as you
know I appreciate your comments both publicly and privately.
The clarification:
In the US & Canada routine medical care is provided by ALLOPATHIC
PHYSICIANS, also known as "medical doctors". While many of the Allopaths
also study and practice Homeopathy and other disciplines, Allopathy is
the "mainstream" here. This is not so in the rest of the world, only in
N. America. The rest of the world enjoys a much broader (some would
argue better) spectrum of medical treatment as "mainstream" and indeed
in many countries Allopathy is considered "alternative" treatment.
Physicians many are familiar with in the US who fall outside mainstream
allopathy's medical doctors include Osteopaths (Doctor of Osteopathy -
DO) and Chiropractors (Doctor of Chiropractic - DC). Herbalists,
Naturopaths, and Homeopaths fall under different governmental regulatory
guidelines but very definately practice medicine.
FYI, the Presidents of the United States and the Royal Family of Great
Britain have enjoyed the services of Homeopaths for many generations.
Our own Dr. Chiu once mentioned that there is even a Royal Homeopathic
Hospital in GB. So, next time you think about "mainstream" medicine,
remember the stream is only main where you are standing.
The new topic:
Some would argue that the monopoly of allopathy in the US serves us no
good. Though I have family within that community, I would have to count
myself amongst them, but with some partial disclaimer. The monopoly of
allopathy in the US, and the huge market & wealth represented here, have
served to entice, promote and encourage R&D into many new drugs and
treatments. However, the mind boggles at the prospect of what might have
been had the monopoly been to a different form of care, or not at all.
What fantastic remedies would there be if it had been Homeopathy,
Herbalism or Naturopathy? One can but wonder as today it would appear
that in time, successful medical practice will include all medical
disciplines including Allopathy, Homeopathy, Accupuncture, Herbalism,
Naturpoathy, et al as the consumers and even the new breeds of Doctors
will force this to fruition.
When there is competition, even in medical care, those competing are
prone to stretch, excel and work harder for the patient's well being and
ultimate patronage by reputation. That, BTW, is how and why the AMA was
formed for those in the States. The Allopaths were losing too much
business to the Homeopaths so they formed a professional trade union, an
association called the American Medical Association. By doing so they
were able to pool their resources, lobby the various governmental
agencies and establish monopolistic, and near total and absoloute
control over medical services in the United States. This was during the
heyday of such practices and was common in other endeavors as well.
However, after a hundred years or so of this, consumers have set the AMA
back on its hind side with their embracment of alternative treatments
and self-care. Now we see many allopaths branching out, and
pharmaceutical companies joing their endeavor to race for the best "St
John's Wort" or whatever.
--
Regards,
Geoff Crenshaw, ACC

Hi all. I read Morton Walker's book on Olive Leaf Extract a few days
ago, and also ordered the East Park brand of OLE. It just arrived
today. But, I'm left with a question now. All the label says is
R-Olea europaea - olive leaf extract 500-mg.
No where on the label does it specify any % of oleuropein. Where is
everyone coming up with the 38% concentration?????
BTW, customer service there also said it's going up to $22 per bottle
by the case. They wanted to charge me that the other day, but I said
"no" so got the $18 price.
Would appreciate your input on the 38%?
Thanks, Starla (Hazel's daughter)

Dear Group:
I started the diet on Feb l998, and the AP on 4-2l-98 at l00MG
Minocycline MW&F. On 4-2l-99 I was declared in remission by my
rheummy. I had looked forward (with no great relish) to a 5 year period
before any good results from the mino. I watched my blood tests get
better and better from about last September on and hoped I was getting
nearer to remission, but didnot hold my breath in waiting. I am proof
to me that this AP works. I was on trex & plaquinel and daypro and all
kinds of junk meds before I found the AP and I am greateful to everyone
on this site for their support and advice and to Dr. Mercola for his
input, diet and help. Now I have osteoporosis and osteoarthritis
according to the dr., well I will again fight it with the tools on this
group and hang in there and I hope everyone here will hang in there
too. There is light at the end. LOVE YOU ALL. Janet-Montana RAl2
AP l4mths, and will continue the Minocycline which may keep me in
remission and do damage to the osteoarthritis at the same time.

Here is something from the RA disease info that I have up copied from
the medical book. This isnt a real new book and Ive read the same in all
rheumatology books but it seems most of the doctors havent read this

Does anyone know if Propulsid (ciaspride) loses its effectiveness if taken
for long periods of time?
If it does, does taking a break and restarting it help?
Thanks,
Melanie.

Is there a way to find out the names of all bad bacteria and the antibiotics
which act on them?
Thanks,
Melanie.

Hi Maria:
Last year a lady in the rheumatic.org group had reversals like you described.
Upon checking she found out that her pharmacy had changed her brand of
minocycline without telling her. All minocyclines are not created equal.
I personally prefer the Lederle brand of time release capsules of
minocycline. Lederle also has the patent for the original minocin, so I
suspect that their generic is formulated the closest to the original. Most of
the other brands of minocycline are white powder and are not time release
capsules if my memory serves me right. Even if your brand has not been
changed by your pharmacy, you might consider switching to one of the three or
four brands of minocycline that have been mentioned by this group previously
as being more effective. I do not know which ones those are, but if you are
interested I'm sure someone in the group will let you know if you ask. Better
health, Al

I've been prescribed erythromycin to take for 10 days, 3 times a day (I'm not
sure yet at what strength - standard dosage, whatever that is).
My doctor mentioned that this antibiotic had made him very sick. Has anyone
else taken it at this dosage? Did it make you sick or did you have any other
adverse reactions?
Any information would be appreciated.
Thanks,
Melanie.

Does anyone know of a doctor using the AP near central Massachusetts? I
have been seeing Dr. Trentham, but would like a second opinion.
Dr. Trentham has taken me off Minocin and will not prescribe Doxy.
After a few, wonderful, months on Minocin I developed back pain. Dr. T
assured me it could not be my kidneys, so I kept taking it. Now, having
been off it for nearly four months, the back pain won't go away and the
RA is in flare. Originally, the pain would go away within a day of
stopping the Minocin. Now Dr. T thinks it must be affecting the kidneys
and wants me to take Plaquenil instead. I won't do it. I see this as
the start in the downward spiral of RA drugs that damage the body. I've
already tried, but Dr. Franco won't take telephone appointments. Anyone
know of a doctor in the New England-ish area?

Thanks Sarah. That is true, you cannot submit an application until
you have stopped working. However, you can get lab tests done, and a
complete joint and range of motion exam and have your physician write it
up to submit.
Denise

Good morning,
Hope you enjoy the reading:)
New Targets For Cancer, Arthritis Therapies
http://www.intelihealth.com/IH/ihtIH?t=333&st=333&r=EMIHC000&c=228268
June 7, 1999
NEW YORK (Reuters Health) -- Armed with a new understanding of
how certain enzymes go haywire in the
body, researchers may soon be able to tackle arthritis, as well
as cancer, from a different angle.
Two separate groups of scientists report their latest findings on
these enzymes, known as matrix
metalloproteinases (MMPs), in the June 4th issue of the journal Science.
The primary job of MMPs is to "chew up proteins," the author of
an editorial in Science notes. They
"remodel the entire body during embryonic development and help
migrating cells, such as immune cells
or the cells necessary for wound healing, move to where they are needed."
But when the function of these enzymes goes awry, the result can
be arthritis or cancer. Finding a
way to control MMP activity is a goal of many scientists.
By describing for the first time one MMP enzyme's
three-dimensional structure, Dr. Karl Tryggvason
and colleagues from the Karolinska Institute in Stockholm,
This specific enzyme has been shown to help cancer spread, and
also helps tumors to build supply
lines of blood. Knowing the structure of MMP2 should help
scientists develop agents to inhibit its
action
In the second paper in Science, a group of scientists led by Dr.
Mickey Tortorella of DuPont
Pharmaceuticals Company in Wilmington, Delaware, report that they
have identified a new family of
MMP enzymes called aggrecanase 1 and aggrecanase 2.
These enzymes are thought to contribute to arthritis development
because they "chew up" aggrecan,
one of the major components of cartilage. When aggrecan levels
are depleted, cartilage becomes
dysfunctional. The result is pain in affected joints.
"The fact that we have identified the enzymes responsible for
aggrecan degradation, we now have the
ability to design small molecules (that) are selective and
potent, which would block these enzymes.
So in theory, we should be able to slow down or more importantly
stop the progression of the
disease," Tortorella told Reuters Health.
"Aggrecan also coats collagen, so by preventing aggrecan from
degrading not only do we prevent
aggrecan loss, but we prevent collagen loss, the two major
components of cartilage. So we think that
by targeting these two enzymes -- aggrecanase 1 and 2 we
should be able to prevent the onset of
diseases such as osteoarthritis and perhaps rheumatoid arthritis
as well," Tortorella added.
SOURCE: Science 1999;284:1600-1601, 1664-1669.
Copyright 1999 Reuters Limited.
Kathryn

Martha,
You might want to clarify what the attorney meant by the five
months.
When you apply for SS Disability, you have to wait five months
before you receive a check, after you have been approved. For example,
I left work Oct 9. Because I worked in the month of Oct. it is not
counted. I applied in Nov. was approved three weeks later. I received
my first check May 3 for the month of April. Nov-April=five months, the
waiting period. Social Security checks which are received the third of
the month are always for the previous month.
HTH
Denise
NC

Hi everyone: Yes, asthma and rheumatoid arthritis does play havoc with each
other.
I have both. In fact, I have had asthma since a teenager, however, was only
diagnosed
with RA since 12-98.
In 1994, I had pneumonia (mycoplasma/atypical) and then again this past March,
1999
I again had pneumonia (atypical, and also mycoplasma). I was tested and it
showed
mycoplasma pneumonia.
I am thinking that since I did not have any of the symptoms of RA until after I
had
pneumonia in 1994; could mycoplasma pneumonia bring on the RA?? I think someone
already mentioned, which comes first.
These two diseases (lung conditions) and RA seem to go hand in hand. It is so
frustrating
because what I need to take for RA I can't take the meds because it causes
wheezing such
as ibuprofen, anti-inflammatories, and plaguenil, and others medications for RA.
SO that makes
me stuck with predisone. However, the antibiotic therapy (I am on 100 mg doxy
2 x day) I can
be on. But I still have to watch it. At times when it builds up in my system
(or the toxins build
up from the dying off of mycoplasma) I can get swelling in my hands, face,
ankles/feet and have
trouble breathing. So here goes, is it asthma, is it RA, is it a combination of
both. HELP.
Yes, sometimes it does get discouraging.
I am finding it very difficult to continue working with both of these
conditions. I am 51 years of age.
I had a free consultation today with a disability attorney; it is kind of
discouraging.Attorney said," Well, you have to be out of work for at least five
months before I can begin to work with you on your case. And it might take a
year for you to get the disability, etc.I have disability insurance on my job
and the attorney said that might pay for some of the days off while I wait for
SSI. I really do not understand. I am going to have to do some reading up on
this. Any help or info out there. Thanks.
Greeting to each of you. I enjoy and benefit from your e-mails and your
valuable information and
suggestions from people that know what we are all going through.
RA diagnosed since 12-98 antibiotic therapy 12-98 Asthma since 1960