I have spells of the extreme sound sensitivity. I had it before the AP and
occasionally now.
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
word wrap solution. In Netscape go to Edit, Preferences, in Mail & Groups,
Messages...check wrap
long lines and specify the number of characters desired.
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
Just wondering, Martha, what that RD has tried for that finger? Did you ever
have cortisone injectons to the joints here? Or any other tx? Did he ever tell
you to exercise it when it began, to help preserve range of motion? Or hot and
cold therapies, etc? Grrrrrrr! My comment on his comment is unprintable.Even as
a last, drastic resort, isn't joint replacement possible?
You just got here and probably missed the beautiful letter yesterday on the
power of the human spirit. I'll dig in my delete files and see if its still
there. Don't give up on this! Sincerely LizG
thanks for your input. I agree. Its back to Antiobiotic Tx. One of the things
in addition to the pain, is the fact that I waited too long to start therapy,
etc.
because my left index finger will not bend and stays swollen and inflamed all
the time. It is twice as large as my right index finger. The rheumatologist
stated,Well,
it will never be any better." and that I will never be able to bend it. IDoes
anyone
have any comment on this. Even the predisone does not get the swelling down.??
Martha Smith
Need to find a doctor in the Toronto, Canada area that will do the
Antibiotic therapy.
Can anyone tell us of one. Marina had one but the doctor did not follow
through.
Thanks, Jim and Marina Pye.
Dear group my name is yosi and I am suffering from reiter the last 14 years.
The last 3 years I am in treatment with minocycline 100 mg per day and voltaren
suppositories whenever I need it, usually 50 or 100 mg per day.
During the first 2 years there was a slow but assiduous improvement.
In some period I could even stop with the voltaren (anti-inflammatory,
analgesic)
And I felt like 90% as normal as I was, in walking and daily activities.
About 6 months ago the improvement stopped and there was even a serious
worsening of my general condition. A great deal of pain in my joints (especially
in my pelvis area neck and ribs) and a fatigue during the whole day even after a
long night sleep.
During the last 3 years I did not stopped taking the minocycline, or changed my
regular diet as described by dr. mercola's nutritional adjuncts to dr. brown's
antibiotic protocol
I did not change my dwelling or my work, and I did not start a strain job.
Could it be that the minocycline stopped effecting?
Maybe the prescription should be changed?
I must emphasis important fact - the early signs of the arthritis 14 years ago
started exactly in a time that I had rot channel and filling (dental)
treatments, in a large number of tooth.
Since then I had no reason to see a dentist- I had no tooth problem.
There were some mouth or lips ulcers, but no tooth infection or pain.
Is there any connection between the two?
Is there any further information to emphasis Dr. George meinig theory (root
canal cover - up)?
And if there is - what could replace root canal or tooth filling?
I have great suspicion about my teeth, although I have no seen problem with it.
Any information regarding the connection between arthritis and root canal would
be helpful. (Dr. to consult, evidence among our group, or some new research
about that)
Have hope yosi .
HELLO EVERYONE I`M A LITTLE BIT SAD BECAUSE I CAN`T GO TO SEE MY BROTHER BECAUSE
HE IS IN MEXICO (IS NOT FAR FROM HERE 40 MINUTES) BUT I DON`T WANT TO TAKE MY
BABY TO THE HOSPITAL FOR A LONG TIME AND I`M ALWAYS AFRAID OF TAKING TO A
HOSPITAL BECAUSE OF THE STRANGE DISEASES HE CAN CATCH THERE;AND ALSO HE GOT
ROTAVIRUS ABOUT TWO WEEKS A GO AND HIS MD TOLD ME NOT TO TAKE IT THERE BECAUSE
HE WAS SICK IN THE PAST DAYS AND HE IS RESPONDING GOOD BUT ANYWAY IT IS NOT A
SAFETY PLACE FOR HIM.I HAVE TALK TO MY BROTHER AND HE`S ALMOST SURE THEY`ARE
GOING TO TAKE HIM TO SURGERY ON MONDAY SO I WILL WAIT HERE UNTIL MONDAY AND GO
TO SEE HIM ON TUESDAY I DON`T KNOW I`LL SEE,WITH ALL MY HEART BUT I CAN`T SEE
HIM BEFORE.I PRAY EVERYTHING IS GOING TO BE O.K. AND I`M SURE OF THAT.AND
TALKING ABOUT ME I THINK EVERYTHING IS JUST FINE ONLY A LITTLE PAINS IN THE
JOINS OF MY HAND BUT NOT SO MUCH SO I`LL TAKE AN ANTI-INFLA OR AN ANALGESIC AND
I`LL BE FINE.WELL I HAVE TO THANKS LINDA AND CAROL FOR THEIR SUPPORT AND CUTE
WORDS.THANK YOU BOTH...AND SEND E V E R Y O N E A BIG HUG AND HAVE A NICE NIGHT.
FROM WARMY WEATHER ROCIO
Thanks for your welcome. Your information was great. I did not give antibiotic
treatment a chance with Doxycycline. I am going to read up on Dr. Brown's
treatment/material. I am in the St. Augustine/Jacksonville area of the country.
I realize the Mayo Clinic is here, but I have not been affiliated with it with
my
insurance in the past. However, my company just recently went on BCBS and
perhaps that it an answer. However, sometimes you are treated like a number
in the very large system hospitals. I think at this point I will make an appt
with
my ortheopedic doctor who first talked about antiobiotic treatment for RA; Could
you explain what is probiotic tx while you are on the antiobitics, sorry I do
not know
what that means. Does anyone know what CMO is. I have heard it is in the
nutritional stores and it has something to do with MAGNESIUM. any idea? Please
let me know. Have a Great Sunday. Martha Smith
Liz:
I appreciate your reply. I was just about to go to bed and I decided to look
one more time and check my "mail". Your note was helpful. I trust my
orthopedic
physician, and his attitude is helpful and he does not make me feel stupid. I
know
degrees do not matter, and everyone has certain gifts and talents, etc. but the
rheumatologist just looks at me and seems to be "bad" at me, if something does
not work. I phoned the office on Thursday afternoon and asked the receptionist
to
have the nurse phone me; that I wanted to go off the Plaguenil. But no response
and now it is Sunday, no response. I might have needed to know something about
the results of just going off the drug. I was only on it for a week or so when I
did
not like the side effects. Thanks for your input. Goodnight for now. I am glad
that
I am part of this "new family"; like you said Liz, sorry it it RA that has
brought us
all together, but glad for the "listening ear". Martha Smith
I teach my kids that no question is dumb if you don't know the answer...RA blood
work can be very confusiong. There are people that have RA big-time and yet are
still sero-negative, Other with high figures and little outward signs of the
disease. Look at one of Sarah's posts (will say from SC) under her signature
for her website, it has a lot of great info on some of your questions. Sorry
you had to be here but glad you came.... This is just my humble opinion, but I'd
go back to the orthopedist, conventional medicines only slow the disease, there
is no promise of a cure there yet. Sincerely Liz G
For those interested in hearing about other new, non-AP treatments for
auto-immune diseases, I just stumbled on this one: www.stci.org see the
"breaking news" at the top. LizG
Thanks for welcoming me to the group. I was taking Doxycycline 100 mg. B.I.D.
But I did not take
it for very long. About the time I got going on it, over a month. I was
referred to a rheumatologist and
she said not to stay on it, but get on other medications.... I am a little
concerned about being on
predisone even for this long of a time because of possible side effects: blood
pressure heightening,
cataracts, and etc. But it is just about all I have right now. I go back to the
doctor in a couple of weeks.
She will probably not be happy that I have decided against the Plaguenil. I
belive it is an anti-malaria
drug. Wow, I wonder what that does. Probably it is just another suppressing of
the immune system. That really doesn't make sense in some ways, does it! I
should try Doxycycline once again. I need
to go back to the orthopedic physician who recommended it. I have had
hygegen?spelling injecting
into the knees for osteoarthritis, great. Good results; need to be repeating
once every six or 9 mts.
My finger joint (left index finger is the one with rheumatoid complications.
And the other hand has some
discomfort in the thumb area. But generally the predisone has helped with
morning stiffness and
mobility, even at 10 mg a day. Thanks for your input concerning candida
albecans, something to
look into the info about. Sorry I seem to be wordy! When I had RA factor blood
work I was just
over the borderline toward RA.. Does the degree that you have RA have anything
to do with the
blood work reading....is borderline you have it, but a little, or high reading,
have it terribly worse??just
asking, may be an ignorant questions, but.... thanks for reading this
everyone..Martha Smith
gmsmith@...
00 is
Dear Debra and anyone else out there having a problem with messages coming as
attachments in Netscape, the solution is:
in the regular mail portion of Netscape
Click on View
Click on View attachment inline (if it is not checked)
Be sure Wrap lines is also checked
You will no longer get attachments. The message will be in the normal mail space
(the background changes color on mine) and will be wordwrapped.
Cheers - Jan
This is the first time that I have written. I am so glad that I have found this
help.
I have tried anti-inflam for Rheumatoid arthritis; because of asthma tendencies,
I can not take them. I am presently on Predisone 10 mg per day. I have been on
Predisone for three mts. I have tried several medications, because of side
effects I
can not stay on them. I have just put down another one! Plaguenil. I noticed a
rash
and itching, but then later noticed a hearing loss which lasted only a few
seconds,
but scary. I really do not know what to take or do. I am currently going to a
rheuma
tologist, but she seems not to really know what to do with me! I am 50 years
old,
married, grandmother, but am a professional children's therapist and desire to
keep
working and MOVING! Any adice, I would welcome it. I also tried Azul..dine,
cant
think of the spelling right now, did not work. Also Doxcycline too, noticed no
change. One of my big questions tonight is this: Have you heard of yeast
(candida
albecans being one of the causes of RA? Thanks for "listening" to me. Martha
Smith gmsmith@...
Im getting the digest right now and cant easily answer a post so Ill put several
things here.
Liz G.: Every doctors medical book written for doctors mentions that it is
suspected that there is
an infectious cause to rheumatic disease but not proved. Check out the articles
on the links page of
the Medical book info. It states it in there somewhere too.
Mark H : Many many of these herbs can be gathered in the wild if you are a
country person or near
country. Get an old time herbal that tells about brewing teas from them. Best
not to pick along
roadsides tho because of the exhaust from vehicles.
Susan and others: You will find info about tests and links to info on the
supportlinks 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
I am having trouble reading some of the messages from the group because they
come as a text file. My netscape reader has a box in the message area that
I have to click on to read the message. It then goes to the message itself,
which invariably has no word-wrap on it. The result when I finally arrive at
the message is that it is one long text string that I have to scroll
horizontally at least 5 times to read. When it's multiple lines, I have to
scroll back and forth over and over again to try to read it. At this point
it's such a pain in the pitooti to read, that I'm simply skipping those
messages now. I've never had this problem before (many years of experience)
and if someone out there who uses Netscape has a solution I would dearly
love to hear it.
Rather than clog the list, it's probably best to mail me directly.
Thank in advance!
Best - Jan
Dear Jan I hope you have found the solution to you problem. Is this one coming
through ok? Also if it's not I remember someone who gets the digest form of
the list complain about scrollling too so if it's not ok youmight want to go to
www.onelist.com , to the members page and see how you are subscribed. Hope
this helps. LizG
You have eloquently put into words my own sentiments, and I will gladly hand you
a soapbox anytime you want to get up on one! LizG
On my bottle of Pau D'Arco it says that it is sometimes referred to
as Lapacho.
Denise
For those I was talking to yesterday about viruses, medscape has the 6th annual
conference on retroviruses summaries on it right now, at www.medscape.com LizG
Ray, thanks again for the valuable info, where do you find all this? Got any hot
researching tips? LizG
C-reactive protein tests detect proteins in the body that result from
inflammation or tumor formation. Mycoplasma complement factor is specific to
mycoplasmas. There are labs suggested in "The Road Back" but this info may be
outdated. I think there are labs suggested in the rheumatic.org websit
somewhere but can't find them right now. Perhaps some suggested in Scammell's
new book, I haven't got it yet. Anyone with a copy handy?
Websites I like for research are www.medscape.com www.medicinenet.com and
www.healthgate.com You have to register for some of these but they are free,
and I'm sure there are others. Does anyone else have some good favorites? Also
does anyone know which website has the Ask Dr. Dean Edell on it, I tripped over
it once and now can't find it. Hope this helps. Sincerely LizG PS Have found
Breakthrough In German Enzyme Research Part II
Systemic Multi-Enzyme Therapy:
The Power of Synergy
By Lane Lenard, PhD
Keeping the Blood Flowing
Thanks for your kind words of encouragement. I have been on the AP for nearly
one year, and have had great improvement inareas of fatigue, sleep disturbance,
dizziness, and other related symptoms. About a month ago I started noticing
improvement in my foot joints, this only bothers me a little now, if I overdo
the walking and driving. I still have a lot of trouble with other joints, but
feel they will improve also as my feet did. The herx thing took me by surprise
as the effect only showed itself a little when I was on tetracycline, I was
unprepared for this when I switched to minocycline.
What you said about kids is so true. They get me out of bed when it would
otherwise take a gun to my head to get me to move. Maybe mandatory babysitting
should be required as part of the protocol! <G
stress you out like a kid!
Hope you feel better today and you hang in there too. Write me anytime you
like. Sincerely LizG
Group: DMSO
The health food store said to put a small amount on sanitized area and leave
on for 20 minutes and rub completely the skin. Do you use soap to remove the
creme?
Please give advice- I have not been able to lay down all night for the last 4
nights!
I really need to try this stuff-
Carol*
HELLO EVERYONE SORRY FOR NOT ANSWERING BEFORE BUT I WENT ALL DAY TO MEXICO CITY
BECAUSE MY BROTHER IS THE HOSPITAL,SINCE 4 DAYS A GO,OF A BIG PAIN IS HIS BACK
BUT THE DOCTORS ARE WAITING TO SEE IF THEY HAVE TO GET HIM TO SURGERY OR NOT
AFTER SOME TEST THEY`LL MAKE SO HERE I AM BACK TO THE GROUP.
THANKS A LOT FOR YOUR WORDS SARAH AND PAULA THAT KIND OF SUPPORT IS THE ONE THAT
ANYONE CAN PAY IT.THANKS AGAIN!!!!!!!!
BIG HUGS TO EVERYONE AND HAVE A GREAT WEEKEND.ROCIO
Is erythromycin usually the next drug of choice if you can't take the
minocycline? Has anyone ever failed on minocycline and gone back to an earlier
choice ( I was taking tetracycline before and just switched) Any input would be
appreciated--I have to go see my Dr about this tomorrow. Sincerely LizG
Sorry, since this new email, I don't know how to unsubscribe. Please help.
C-reactive protein (CRP) is an acute phase protein being present in low
concentrations (below 10 mg/l) in healthy individuals. Any pathological
condition associated with invasive infection or other tissue damage is
accompanied by elevation of CRP.
hugs,
lisbeth
I'd like to see that article too. The woman who wrote it said I'd get a
copy of the magazine in the mail. I wonder if it is sold at the book stand.
Anyone know. What did I say?
Denise
<A HREF="http://ciac.llnl.gov/ciac/CIACHoaxes.html"
Hoaxes</A
Hi all.
Any info appreciated.
I saw a "holistic" doctor this week to update supplements, and walked out of
there
totally bummed (and poorer!). He told me 1) that I would get worse and worse
(gee thanks!) and that 2 ) (and this is where I need help) THAT I AM NOT A
GOOD CANDIDATE FOR THE AP because a C reactive protein test I had back in
11/98 was not elevated so I must not have an infection in my body causing the
RA.
What does CRP measur exactly and is there any validity to what he said re: my
chances to benefit from the protocol.
Thanks and TGIF
Susa
Hi there group,
Anyone aware of this or know what it is about? My mom is always sending
me tidbits and wondered it this was worth anything.
God Bless, Debra
Paula : I read your article from the standpoint of someone new to the
group. It would be very unfortunate for someone to open up the box and
see a bad apple right from the very beginning. Your point is very well
taken. I wish I had expressed it so well. We all are disappointed when
difficulties arise, however there is absolutely NO
EXCUSE FOR ANY GENTLEMAN ATTACKING A LADY, LET ALONE ATTACK HER IN
PUBLIC. IT IS ABUSIVE BEHAVIOUR AND DOES NOT NEED TO BE TOLERATED IN
ANY FORM SHAPE OR FASHION. NO ONE ASKED FOR HIS COMMENTS OR ABUSE. NO
ONE DESERVED THEM. ONCE AGAIN AS SOCIETY DICTATES, WE HAVE FOUND PITY
ON THE OFFENDER AND FORGOTTEN THE PAIN AND SUFFERING OF THE VICTIMS.
I trust we can all learn from this a practice more kindness and
compassion in our dealing with our fellow persons.
Sincerely, Robert in Chattanooga
Hi everyone.
RE: St. John's Wort.....it also affects serotonin like the SSRIs which are
Paxil, Prosack, Zoloft, Luvox and some others. Only Prosac lists RA as a rare
side effect in the PDR, I think, but the others do list aches and pains. My
rheumatologist prescribes Prosac all the time and he has been in practice many
years . In fact, he was the personwho encouraged me to try it since I was
afraid because I knew aboutthe RA (1 in over a 1,0000 people) but I'm a
worrier. He told me that my reaction was a true "serum sickness? which meant
it affected my whole system and all myjoints. IT IT VERY UNUSUAl so I hope
people who need medication are not scared off. Also I have take St. John's
Wort in the past and never had any problremsI took the liquid tincture by
HerbPharm) 2x a day. However after Ihad to discontinue the Prosac, I tried it
again and got a rash! though no aches or arthritis symptoms, so it seems that
somehinhg is changing in my sysyem and I am reacting to fdrugs that increase
serotonin. I also got a flare on Wellbutron, a differtent class of
antidepressants. SO DO NOT LET MY EXPERINCE INFLURCE YOU...it's quite
unusual. AND RE: THE ST
make me feel ill RA-wise. It is a fairly safe herb and effective for some
with mild depression, so give it a go if you've done well on other meds and
haven't been allergic to lots of them.
Susan
Dear Ethel,
Has anyone gone into remission with 50mg of minocycline MWF? I had
such good results with 200mg MWF but had the headache problem and maybe
BP, too. The only herx I had was with the first 50 mg. so I am
wondering if it is possible that that might be the dose for me? The
erythromycin is not doing much that I can see and I am getting
discouraged, frustrated, and angry. I have been on the ery for almost
one year.
Thank you.
Denise
Hi,
A chiropractor who does nutritional work told me not to use GNC
products. I am unable to see her because of my transportation
difficulties. She sees people for a year, tailoring nutrition programs
for them. She also sells supplements for her clients, including
Metagenics, cold pressed herbs, etc...
BTW, Diane Chamberlain asked me to send you greetings.
Denise
Hi Friends
One thing I'm finally understanding is the cycles of the AP. I know I
read the two steps forward one back, but didn't really realize what it
meant in real terms. There are days on end when I fell so optimistic
and positive remission is just around the corner, that I've one. Then a
day later my knee will swell my ankle will hurt and I'll wonder if it
was just RA fooling with me and it was going to win. But now I realize
it's just the treatment and I'll keep hacking away at it Eventually
we'll all win.
Julie
RA 11/98 AP 12/98
To those of you who told me that you had experienced dizziness or nausea on
minocin, I have been advised by Riteaid's Pharminfo service that this should be
reported to your doctor as soon as possible, which I plan to do as soon as I can
reach mine, other symptoms that should be reported right away are: dizziness,
vertigo,nausea, vomiting and ataxia (problems with voluntary muscle control). I
have a question for those with experience of mino problems, which antiobiotic is
generally tried next, in case he wants to take me off this? Any suggestions?
Since I asked for the tetracycline and the minocin, I guess I'd better be armed
and ready to prescribe for myself again. Thanks LizG
http://www.altmedicine.com/
This has tons of info and also Dr Weils info.
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
Try getting the "good tasting yeast" or edible food yeast, whatever its called
in your health food
store. Its very good tasting and great on popcorn and other things. Sorta tastes
like cheese on the
popcorn to me.
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
Dietary Magnesium and Asthma
Reprinted from Medical Sciences Bulletin , February 1995, published by
Pharmaceutical
Information Associates, Ltd.
See also: Magnesium
Magnesium is fourth on the list of the most abundant cations in the body
(following calcium,
sodium, and potassium), and it is second only to potassium as the most abundant
intracellular
cation. It is an essential cofactor in more than 300 different enzymatic
reactions, including
carbohydrate utilization, ATP metabolism, muscle contraction, transmembrane ion
transport
(calcium, sodium, chloride, potassium), and the synthesis of fat, protein, and
nucleic acids.
Magnesium also appears to play an important role in lung function. In a large
study of adults
selected randomly from the general population, Britton et al. found that high
dietary magnesium
intake was independently associated with better lung function and less asthma
and wheezing.
The investigators calculated dietary magnesium intake (by food frequency
questionnaire) and
evaluated lung function and atopy in 2633 volunteers aged 18 to 70 years. Lung
function was
measured as one-second forced-expiratory volume (FEV1) and by airway reactivity
to inhaled
methacholine. Atopy was measured as skin-prick response to three environmental
allergens.
Subjects described their respiratory symptoms and gave social, medical,
occupational, and
smoking histories.
Mean magnesium intake was 380 mg/day, although intake varied widely and was
significantly
lower in females than males. Intake also decreased significantly with increasing
age. After
adjusting for age, sex, height, and the effects of atopy and smoking, the
investigators found that a
100 mg/day higher magnesium intake was associated with a significantly higher
FEV1 and a
reduction in lung hyperreactivity. Magnesium has several antiasthmatic actions:
as a calcium
antagonist it relaxes airway smooth muscle (in vitro) and dilates bronchioles
(in vivo). It also
inhibits cholinergic transmission, increases nitric oxide release, and reduces
airway inflammation
(by stabilizing mast cells and T- lymphocytes). The investigators concluded,
"Low magnesium
intake may therefore be involved in the etiology of asthma and chronic
obstructive airways
disease."
Dietary magnesium is obtained from cereals, nuts, green vegetables, and dairy
products. However,
according to Britton et al., a substantial amount is lost in cooking or in
refining foods. Diets
high in
refined or processed foods are thus likely to be low in magnesium. Magnesium
deficiency is
surprisingly common. In one study, hypomagnesemia was found in 65% of an
intensive care
population and 11% of an outpatient population. Magnesium is used
pharmacologically in acute
myocardial infarction, angina, cardiac arrhythmias, alcohol withdrawal, and
pre-eclampsia. It has
been used to treat acute asthma, and now it appears that magnesium may also help
prevent
asthma. (Britton J et al. Lancet. 1994; 344: 357-361. McLean RM. Am J Med. 1994;
96: 63-76.)
--
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
It comes in a liquid form. The cheapest way to buy is thru a veterinary supply
source...much cheaper
than those that sell it for arthritis. Try the Jeffers vet supply listed in the
support links. I buy
from them and they are extremely reliable and fast shipping.
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
This is really true, just wanted to point out--from what you all were telling me
awhile ago when I was asking about brand name vs generic Minocin--it's hard to
tell if what you're getting in your prescription caps is pure, potent and
unadulaterated too! Is this just another case of--Well, that's life! ?
LizG
Joe-
The quotes from Dr. Jacob already posted offer most of the reasons.
But Dr. Walker's book also notes that dmso got off to a controversial
start with Dr. Jacob and others being accused of improper conduct
with regard to the initial large scale studies of dmso in the U.S.
Dr. Jacob, by the way, was exonerated, but dmso got a public
black-eye that was empirically undeserved yet scientific circles
continued to perpetuate.
Regards,
dr. stan
RA 28mos.; AP 20mos.
Hope everyone has a great weekend. Here's a couple of good stories.
Paula
I'd be interested in trying this too but it probably would be hard to get too
many people there at the same time due to not only time zones but the
interruptions of everyday life..Why don't you pick a time and place, Mark, and
post it to the list and let's see what happens! LizG
I was just reading Arthritis Today's article on herbal medicines. It pointed
out that it is very difficult to determine if what you are buying is really pure
or not. An article in the New England journal of Medicine found that in "an
analysis of ginseng products, the amount of active ingredient varied by as much
as 10 times - dispite labels indicating the products should have been
consistent." In addition the California Department of Health Services study
found that 83 of 260 samples of supplement products from Asia were contaminated
with poisnonous heavy metals like lead, arsenic and mercury, and drugs not
listed on the label"
Makes it tough to know who's making good stuff, doesn't it? The conclusion was
that it is damn near impossible to tell. It's kind of like the MSM I'm
currently taking which I bought from GNC. Of course it has fillers. Is it as
potent as Super Brand X which is 100% pure? How do I know? Does GNC's name
mean anything? You got me. Kind of puts us all in a bind, doesn't it?
In a sidebar, I was amused by the following short paragraph: "Before you listen
to somenone trying to sell you something, see a doctor. Get a diagnosis, and
discuss your interest in natural remedies. Armed with sensible and good advice
from a physician, you can be an educated - and safe-buyer".
This is the kind of crap that makes me want to go find that writer and tell them
to get a reality check. Unless you're going to a homeopath or some sort of
holistic,naturalist or whatever doctor, the chances that your doctor is going to
be educated or give a damn about natural medicines is about 1 out of a thousand.
Or sure, there may be a few docs out there who have an interest, but good luck
finding them. They should have concluded there quote with something like "Of
course, you will need extraordinary good luck and patience to find such a doctor
and you may die before you are successful, but give it a try anyway -what else
do you have to do with your hard earned money other than wander from doctor to
doctor looking for someone who is interested in anything other than what their
textbook told them?"
Believe me, we are left to our own resources and it is a pathetic reflection on
our health care system.
Kind of wound up today, aren't I? I didn't have any coffee for a few days - had
a few cups this morning and can't sit still!
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
Anybody up for chatting in the RA chat room sometime? I've had a few personal
inquiries about that, so thought I would throw it out to the group. On those
few occasions we did have some people in the room, it was a lot of fun, but it
never got the interest that I had hoped it might generate. Perhaps because of
all the different time zones. Anyone have any suggestions?
Thanks,
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
I find it interesting all the comments on taking minocycline on only MWF. I
realize this is the protocol and that I should disobey my doctor (a doctor from
the list, I might add) and take it in that manner. However, I have not done so
and have had success (although not total remission by any means) and so far have
not had any reactions to it (not meaning I won't if I have to take it for a
period of years). When I mention this concern to my doctor, he sort of chuckles
and says that he knows Dr. Clark personally and that that he is a
microbiologist, not a doctor seeing patients every day. As a doctor who treats
rheumatoid patients every day, he feels he knows what works better than those
back in the lab. I should note here, that this is coming from a doctor who
took over Dr. Brown's practice. Now what do I say to this person? I try to
bring up all the stuff mentioned by the group, but he just sort of smiles and
says yes, he knows all of that and he's heard it a thousand times, but it just
doesn't jive with what he experiences as a day to day doctor dealing all day
with rheumatoid patients. Now I sort of feel I have to give some credence to
that - after all , I don't see rheumatoid patients all day and really the only
ones I see are you guys . Yet, I'm conflicted, because in the back of my mind,
I remember all those thousands of anectodal stories of Dr. Brown's patients.
What would you suggest? Write him a letter perhaps, outlining all the arguments
and asking him to respond in writing? (That might or might not have results
with him - I get along with him ok, but that may be tempered by the fact that I
am improving somewhat and that makes him happier than seeing someone who is
going downhill). Just ignore him and go to MWF by myself? I wish I had the
"faith" all of you seem to exhibit. I'm afraid I was born a skeptic and always
want to have things backed up with facts - sounds like I would have been a good
"conventional" rheumie, huh? Yet at the same time, I am sure there is something
to Chinese medicine, Indian medicine, herbs, MSM, DMSO, etc,etc. I sometimes
wonder if the herbs don't work as well for me as they seem to do for others,
simply because I am a skeptic? I wonder if just believing the stuff works is
what makes the difference for so many of you (as in the "power of the mind").
I'm not sure what sort of an answer I'm trying to get here. If any of you feel
the same way, it would probably be comforting to hear that, although of course
it won't solve my problem. Because I have had success with every day, I get a
bit nervous about dropping the dosage (although the money savings would sure be
nice!) and worry that I may start going the other direction which I sure don't
want.
Thanks for listening to all my troubles. :)) . You guys are the best.
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
Linda wrote:
"My Documents is on the desktop, and can have folders for all sorts of documents
you want to keep from any application. I have followed your suggestion, and
you're right, it is handy having the information right there in a support group
folder in Outlook Express. Just one more question: where exactly is it stored
if you were to look for it in Windows Explorer??
"
It should be stored under C:\Windows\Desktop\whatever folder
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 to all the group
WELL THE BIG DAY IS AT HAND- TOTAL KNEE REPLACEMENT A WEEK FROM TODAY!!
I am of course pleased but not looking forward to the hospital stay and the
pain but
know it will be worth it. At least with the surgery theres a light at the end of
the tunnel.
Right now it is just constant pain and inability to function. If all goes well
I'll have the
2nd one done in about 4 months.
Any advice from any of you that has had this procedure would be gratefully
accepted.
BTW
After 14 months on AP I am so pleased with the results. My sed rate yesterday
was 5!
Two months ago it was 10. Dduring the worst of my RA- the sed rate climbed to
88.
No swelling or redness in ANY joint. My back is still bad but that is due to
some old
fractures and OA
So any newbies that are getting frustrated with the AP-hang in there. It took me
almost a
year before I turned the corner.
Best wishes for your good health
Gwen
Regarding eye problems associated with using dmso, Dr. Morton
Walker's book, "DMSO- Nature's Healer" notes that those problems were
isolated to one specie of lab animal and that subsequent dmso studies
with humans showed no such eye problems.
Regards,
dr. stan
RA 28mos; AP 20mos.
I wanted to share my progress with the group. I started Minocin last
September No herx, no changes, etc., very skeptical.
A few weeks ago I started feeling "better" - more energy, etc. I'm even
starting to walk normally again ( I have been hobbling/limping for a year
due to foot pains).
I can't quite put my finger on it, but something is working for me. I also
started Sulfasalazine (an anti-inflammatory) 2 grams/day, but had been on it
for only 4 weeks, and am told it takes 8-10 weeks for it to take effect.
So...perhaps the AP is having a positive effect.
-Mike-
PA (Psoriatic Arthritis) 11 months, AP 5 months.
Some kind soul here, I can't find the post now warned me to not take brewer's
yeast for my B-vitamin supplement due to yeast proliferaation concerns. Now, I
always assumed that the brewer's yeast I take is inactivated rather than live
cultures, and would not be a concern re this. Can anyone who knows enlighten me
on this? I was told to take brewer's yeast by my Dr. for fatigue before
starting AP and am reluctant to stop because i do feel it helped. My Dr. said
to take this rather than other supplements as it cantains the proper balance of
B-vits for good absorption and synergistic action. I also noticed that in a
particularly bad flare seemed to help reduce pain. Don't know if there is any
basis to this, just noticed it--that's my story and I'm sticking to it! So if
anyone could fill me in on whether Brewer's Yeast is a concern re yeast
proliferation I'd appreciate it!
Also I would appreciate it if any of you could tell me whether or not any of
you have experienced this particularly unusual symptom when taking minocycline:
the day I take my mino, I get an extreeeeeeme sensitivity to sound, to the point
where I have to wear earplugs to be able to be in th esame room with anyone just
speaking in a normal tone of voice to stand it. It is very weird and troubling,
and I have never heard of this in the usual list of herx symptoms, so would
appreciate a yes or no roll-call from any of you who have taken minocycline. I
can't reach my Dr. today to ask him but his office will be open tomorrow and I'd
really like to get some feedback on this before I talk to him about it! The
mino does seem to be stirring up the other herx effects so I don't want to stop
it for this if it is a common symptom and merely an annoyance. It is so weird
and not like any drug reaction I have ever felt before. But then I seem to be a
champion at reacting to just about any drug on the market! Thanks for all your
kind support and info. Sincerely LizG
The Role of Gelatin-Based Dietary Supplements in Maintaining Joint Health
<<Hydrolyzed gelatin from collagen contains an amino acid profile rich in
glycine and proline that is uniquely suited to provide nutritional support for
collagen synthesis. There is clinical evidence that vitamin C and calcium,
when contained in gelatin (collagen), help maintain bone and joint health. As
a result, Knox NutraJoint, a new gelatin-based dietary supplement, is
beginning an educational program to inform health-conscious adults about the
benefits of maintaining healthy joints and bones.
The results of numerous controlled studies have suggested that gelatin
supplements may improve joint pain and sometimes enhance mobility in those
with joint disease. In a crossover trial of 52 patients with hip or knee
osteoarthritis, three different gelatin supplements given during separate
60-day treatment periods were significantly superior to placebo in terms of
change in pain status from baseline and reducing analgesic drug consumption.
In 92 geriatric patients with a range of general rheumatic conditions, gelatin
supplementation was associated with statistically significant improvement in
pain scores and in mobility of the shoulder, knee, and hip compared with
placebo. In a third study, 154 patients with cox- and gonarthrosis or juvenile
impairment of the spine received physical therapy, gelatin supplements, or
both for 3 months. Gelatin supplementation or a gelatin supplementation
combined with physical therapy resulted in improved pain relief after 6 weeks.
After 12 weeks, both Schober and Ott signs and mobility values were
significantly improved in the gelatin group compared with physical therapy
alone.
Gelatin supplementation also appears to have a positive effect on
postmenopausal bone maintenance by extending the effect of calcitonin. In 94
women with osteoporosis, bone resorption as assessed by urinary pyridinoline
and deoxypyridinoline was significantly lower in patients treated with
calcitonin plus gelatin hydrolysate than in those treated with calcitonin plus
placebo.
4High intakes of vitamin C may reduce the risk of cartilage loss and disease
progression in osteoarthritis (OA). In the Framingham Osteoarthritis Cohort
Study, 640 participants received complete radiographic knee evaluations to
measure incidence and progression of OA, and usual dietary intake was assessed
using the Food Frequency Questionnaire. A three-fold reduction in risk of
disease progression was found for the middle and highest tertile of vitamin C
intake, primarily related to a reduced risk of cartilage loss. The role of
calcium in sustaining bone health is well documented. Recently, the National
Institutes of Health released a consensus statement encouraging everyone,
especially women, to increase their calcium intake to reduce the risk of
osteoporosis. The statement concluded that a large percentage of Americans
fail to meet currently recommended guidelines for optimal calcium intake,
i.e., for all men and women over age 65 and postmenopausal women not receiving
estrogen replacement, 1500 mg/day; for men and women aged 25-65 years, 1000
mg/day; for adolescents and young adults, 1200-1,500 mg/day; for older
children, 800-1200 mg/day; for young children, 800 mg/day; for infants aged
6-12 months, 600 mg/day; and for infants birth-6 months, 400 mg/day.
Further study is underway to clarify the role of gelatin in joint health, as
well as its mechanism of action.
Hello friends,
I was wondering if anyone stays in the Ft"Lauderdale area or Orlando area.
Also anyone receiving their IV's there?
Kathryn
i have been on doxy for 10 months....and added mino about mid december. i
have been on mon-wed-fri, half of each and this got things stirred up pretty
good. was in a major herx for over a month. had to go back to 5 mg pred,
and added daypro to try to settle things down. beginning to function again
now. now i got a script for clindimycin. dr instructions are to take it 5
days on and 2 days on, and drop the mino and doxy. i think some of you have
been on doxy or mino and have added clindy one day per week. wondering how
that has worked? personally, i would like to continue with the first 2 and
add clindy to try kill off some critters.
please advise....thnx
dave
Hello All I have just gotten home from seeing a remarkable play that I was
almost a part of, until I got the flu. (I was doing some of the multimedia
dream scenes on a screen inside a magic mirror) anyway, This play is about
three women from different time periods all waiting for surgery and the FDA's
closure of a clinic in Jamaica so they can keep on making money on Sugerey. It
is a very intense play and I recommend it highly. It mentions Norman Cousins
in it and his laughing his way back from a connective tissue disease, "Oh and
how is he doing?" " Oh he's Dead," as goes the line in the play (and in fact
as we know he is). For a play about illness it is done very well and makes a
very good point about how hard we try here to get well against the odds of the
money making machine reaping the rewards of our illnesses and expensive
treatments which don't get us better. And the FDA's denial of treatment. It
even brings up the fact of clinical trials in which terminally ill people are
given the drug or a placebo, thus eliminating their chance for survival if the
drug does work. A very good play indeed. I am proud to have my name in the
credits even thought none of my work was actually used in this production by
my school
Kelly Pritchard
Chris,
I've sent the Queensland listing.
hugs,
lisbeth
Dear Brisbane AP users,
I have a friend called Melissa who is 6 months pregnant with her second
child and not enjoying remission from her RA as she did while pregnant with
her first child. She has had to stop all the harmful medication of course,
for her pregnancy and is very keen to find a rheumy who will prescribe.
She's read all my info and knows that her current doctor won't be obliging!
He's all for Metho.
She is happy to travel to Redcliffe to see the rheumy that I see but I
wonder if there's someone closer who she could see?? Thanks for your advice
...
Marilyn
THANKS JULIE I know someone will answer "Fast" but I`m surprise how
fast....thank a lot and have a nice night.Rocio
HELLO everyone...at last I`ve decide to start the Protocol of A.T. (without the
approval of my MD,he insist,that I don`t need it because I`m in the first stages
of the illness)but finally like you all said it`s my body,my life and my
decision so....I`m gonna start right away but the big question is WHAT am I
gonna do about it????? what dosis,time,medicine etc I already ask one of the
experts in here and one of my first truly and helpfull friend Chris.I hope some
answers of everyone in here like everyday you all give support to
everyone...meanwhile THANKS!!!!!!!Hugs and warm night (like in here) Rocio
HI Doctor Chiu,
Could I use Augmentin for reduction of my ASO titre??? Its the only
thing that clears up my sinuses. I am allergic to E_mycin. If I can
--what dose..?
Thanks
Cooky
In article <01be664a$9d6f9060$LocalHost@donray
I don't have enough patients with scleroderma lung to be sure here, and
patients vary in their responses. Likewise, the benefit from Cytoxan
takes some time as well - and is statistically significant i.e.
generally small.
I don't see why he can't have both in terms of lack of drug reactions.
-------
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
Dear Denny, et al,
I was only one of the people who got slammed publically and privately by RR.
I asked him to quit writing privately and when he refused I reported him to
his ISP.
This list is not a haven for deranged people to harrass others and that is
what RR was doing at the end of his tenure. I don't want someone on the
list who says that using antibiotics must have given us brain damage and
similar comments. Then too there was his grandiose idea to start an HMO for
arthritic people.
I did appreciate some of his research efforts--when they were on topic. But
something was terribly wrong in much of his thinking and the connections he
made. Many of his "facts" were not accurate.
When his emotions were slamming up and down he attacked people. Who needs
that garbage from anyone? Not me.
I know he is having a hard time and that may be due to pain or medications
as well as some underlying problem; however, MANY of us on the list have
pain and take the same medications without making personal attacks or
fostering mayhem. RR's attacks were personal and way out of line and I am
glad he is not here.
If you would like to have a list with him on it then all you have to do is
go to the onelist site and start it and then invite him over.
Denisej
Hi everyone,
I am new to the list with this post. I am more or less managing my own treatment
with antibiotics and am somewhat confused as to the correct dosage. One protocol
is adamant that you take 100 mg. three times a week. It says the twice a day
standard prescription doesn't work as well. Yet I find plenty of research
articles that use twice a day. I'm sure you've had many of these questions in
the past and if there is a faq or post addressing them, just let me know where
and how to get it.
First, can someone tell me why less is more effective?
Is the Mon-Wed-Fri regime definitely the protocol I should be following?
Is minocycline definitely the superior antibiotic to doxycycline?
Has anyone out there had to alternate antibiotics every 6 weeks (read in one
article) or take one of each of two antibiotics simultaneously (same article)?
To give you a brief history, I was in an auto accident 7 years ago. I was
diagnosed with fibromyalgia not long afterwards and treated as such for the past
6 1/2 years. Three months ago my rheumatologist (doc number 6 or 7) decided I
was either misdiagnosed or had spondyloarthritis in addition. He is hung up on
cases of chlamydia caused arthritis and promptly prescribed doxycycline bid. My
improvement over the following month or two was absolutely dramatic. Over the
next month I steadily worsened to my original stiff, swollen, painful state. I
don't know if it's possible, but it seemed like the doxy killed off one strain
and then a resistant strain took back over. I've read where you get worse when
they release toxins though, so who knows. Anyway, with all my web research, I
asked for a scrip for minocycline and got it today. Again, he's prescribed it
100 mg bid. As outrageously expensive as it is, I would definitely prefer the
three pills/week over the 14 pills/week protocol. But only if it's definitive
that 3/week is the best protocol! And I also thought I would alternate it with
the doxy every 6-8 weeks too if that will increase effectiveness. Any input from
you experienced folks would be much appreciated. I'm trained as a molecular
biologist, so feel free to be as scientific as you want when replying.
Thanks to you all and best wishes,
Jan K
I f you are reding this I forgot to mention in my previous post the side
effects I am concerned about are:
extremely sensitive to sounds and increased ringing in ears on the day I take
mino
extreme irritability
extreme but short=lived pulses of depression, ie weepiness unrelated to what is
going on around me, or to my emotional state, they come and go beginning a few
hours after mino and continuing for a few hours
I would greatly appreciate your opinion on this before I talk to my Dr as he is
not thoroughly familiar with the AP and I do not want him to stop mino if this
is normal and expected due to herx flares.
also experiencing increased pain, fatigue sleep disturbance, stiffness etc but
assume this is herx related
I am taking mino 100mg 3x week and Aleve 220mg 2-3x day, also supplements vit's
a&d, e, c brewer's yeast flax/borage oil and e.primrose oil; occasionally wild
yam and licorice root during a flare
Thanks in advance for any help you can offer. LizG
Hello:
I think I must have missed something here. What is the full name for MSM?
I want to look it up at my library, which doesn't have Dr. Jacob's book
yet.
Thanks, Sandy in Oregon
Here's the Valentine's day poem...thanks for sharing it with us, Liz, what a
tearjerker!
I knew I would do this if I wrote a general thank you! I didn't mention Denise
to thank her for all her supportive e-mails and information over the past week.
I had already written to Denise, but thought she should be included in my
"group" e-mail too.
Linda
A special thank you to Ethel, Carol*, Ray, Liz, Pat, Kathryn, and Bev for your
support before my surgery. The surgeon said things went well and although he
wanted to give me a general anaesthetic, he agreed to try a local first.
Fortunately that was enough. It was a strange feeling being awake through it,
but I'm just glad that part is over. I should get the biopsy results by Monday.
Linda
P.S. Since I had to have IV antibiotics, I requested and got Clindamycin.
Doesn't this refer to inhaled talc, as in using body powders? Does anyone know
if this includes ingestion through the stomach? LizG
Liz, your posting on juicing today was
most helpful. I find that I can really feel
the improvement after drinking freshly
made vegetable juice. My favorite combination is: carrot, beet, celery, and
ginger.
Enclosed, is a juicing article along with an
excellent web site on living foods::
Yep, definitely, lead is cumulative and hard to impossible to get out of your
body. I'm not allergic to dairy so I try to get a lot of calcium here, also
leafy greens, check references to find ones that do not have a lot of oxalic
acid also which retards absorption of the calcium. Hope this helps...LizG
on this subject, if you have time go to dejanews.com and search for this post:
by DVZELL 1999-02-14 in alt.support.arthritis there is a beautiful letter from a
Dallas newspaper by a man to his fiance with RA a real two-hanky one about love
and RA I'd try to send it to you but am new with PC and don't know how--I am
personally sure youwill not abandon him from reading your letters, the love
really shines through, he has a great gift in you Let us all know how it goes
when you have time and I know you're tired of hearing this probably but please
try to take it easy and focus on the love and healing that you can give him, try
to set medical concerns aside when you can and support him with focusing on the
love and other interests you share. LizG
In Washington State, naturopaths can prescribe antibiotics. Problem is that
many insuance plans cover only scripts written by "their" doctors.
Ute Reeves
RA 3/98 AP 5/98
Need some input on this <grabbing you all by your respective lapels and shaking
How long does this herxheimer hell go on!!! This is way worse than what I had
with tetra. now that I'm on mino--I know this is good but I am ralyy having a
hard time coping and caring for my family, the pain and it makes me so sensitive
to every little sound so you can imagine what that's like with kids aged
2,4,&6...How long was ir real bad for you guys?
Also I would like to ask the experts and Drs who read this--what side effects
of mino are normal and just annoyin and which ones should be reported to my Dr?
I ahve looked up side effects in drug info sites and find the answers a little
vague--I don't want to have my Dr take me off it because of herx side effects
but am leery of not reporting some of them because of references in product
insert info re possible cns effects--it says report any mental and sensory
effects--what are things to look out for? Dr Chiu? Anyone? would appreciate a
little guidance on this one. Thanks PS please excuse typos, have walnuts
where some of my finger joints should be today, and I'm fed up with backspacing!
LizG
Tums, which are recommended by the Osteop. Society, do contain talc. I
have wondered about this, because higher rates of stomach cancer in some
Oriental countries were at one time attributed to talc used in polishing rice.
Is talc safe?
p.k.
Just had time to read the Wash Post article, so glaad this info is coming out
but doesn't it just burn you when they refer to antiobiotic pressure and
evolution of microbes inan article like this!!!??? As if RA and herat disease
could be equated to begging for antiobiotics to treat the sniffles...Grrrr!
Good book re this BTW: The Coming Plague by Laurie Garrett (can you tell I
spend too much time with my nose in a book lately) SCary though, down read it
when you';re in a down mood! LizG
I have no info/exp with Clindamycin but get horrible ringing in ears from some
of the anti-inflammatories I have been on. What other meds are you on? Have
you checked out side effects lists on drug info at sites like www.healthgate.com
or www.medicinenet.com or www.medscape.com Some of these you have to register
to use but they are free, also there are other drug info sites to use.
I have heard gingko extract helps with this but have not tried it myself.
Hope this helps LizG PS I find on the days I take my minocycline the ringing
gets worse a few hours after the dose and stays worse for a few hours. Don't
know if this is from the mino or if it is aggravating the effect of the
anti-inflammatories. The anti-infl's are notorious for thisa side effect. Also
noticed mino seems to increase sensitivity to sound for several hours after the
dose is felt and bet it is magnifying the ringing too!
Dear Joe-
There is a book on dmso, "DMSO- Nature's Healer" by Dr. Morton Walker
as well as a website at www.dmso developed by Dr. Stanley Jacob.
Regards,
dr. stan
RA 28mos; AP 20mos.
I see that some of the links to info on the NJewish site arent working now
meaning they have moved
or removed the info. You might cruise their site and I will too and try to find
it again. Anyway
there is some info on the page itself.
Sarah
--
Clark Signs:
http://members.xoom.com/sclark/
AP Support Group:
http://www.geocities.com/SoHo/Gallery/6412/
Lots of arthritis and health links:
http://www.geocities.com/SoHo/Gallery/6412/supportlinks.htm
Hello everyone,
Last Sept my ASO titre was 306.After 6 weeks of Ampicillin 250mgm 3x a week it
fell to 283:6 weeks later 263.Since it was coming down so slowly I took
Ampicillin for 3 months(12Weeks) before retesting.I was sooo hoping for a
dramatic decrease but I found out today it is 251.All I can do is continue
Ampicillin,be patient and continue my pursuit of wellness.I find it quite
amazing that after 24 weeks of treatment it has only dropped approx 50
points!! Also yesterday I received cortisone shots to the outer aspect of both
wrists.They have been swollen since day one and have not responded to AP.I
assume it is because there is so much inflammation there the antibiotics can't
get in to do their job..Hopefully this will turn it around.
Hugs,
Lin
Are you all aware of recent reports of lead in oyster shell calcium. My doc
recommends not taking calcium from oyster shells because of it. Don't have any
further info, wondered if anyone else here does because I hav family history of
osteoporosis any my mom's doc said all her daughter should take calcium. I have
ben advised to take Tums as it has the lowest lead levels, also heard that a
generic calcium available fro American Assoc of Retired persons pharmacy service
is very low in lead too. I personally will give up some of the better
absorption to avoid lead. LizG
Robert Root is sick too. When he is nasty or offbase we can ignore and/or
delete him. When he is helpful we can commend him. Could we give him another
chance to be part of our "support" group.
Judy H.
The Canadian Osteoporosis Society has a good website for osteoporosis. They
also have an e-mail section where they will respond to questions quickly.
www.osteoporosis.ca
Linda
=======================
SUPPORT GROUP I got this personal email and need your help. My response is
first, please read on to her's and give me and Phyillis your answers.
=======================
Phyllis,
I'm afraid I don't have the answer to your question. What I can do is ask
our old timers on our support group that have seen decades of examples and
know Dr. Brown's work in detail. But...that may take a couple of days. I
will put an urgent request on it.
On a more personal note.....Dan is probably in a huge physical battle if his
lungs are now involved. The 200mg a day for Minocin is very high and not
the norm with Dr. Brown's protocol. However, the latest study (Trentham)
which was recently released in the Lancet article had the patients on 100mg
per day. At 200mg per day I would have assumed that your brother would have
a severe Herxheimer reaction or even a sort of allergic reaction to so much
medication. That may still be on the way. How long has he been on each
drug?
As for "it seems too simple to be true".....it is. I spent 6 months not
believing that my life could be saved by a simple, safe, low dose of a
tetracycline based antibiotic that any pimpled face kid could take. But I
decided I had nothing to lose and everything to gain by taking it.
AS for the chemo.....is it Methotrexate and how much? DON'T FORGET TO
MENTION that the absorption rate for Methotrexate increases with the
minocin. The doctor should know that if we can't get an answer to you by
Monday.
I'll start asking the patient base today. If you are not subscribed to the
support group on www.rheumatic.com I would do it today and start asking
questions. We have a doctor, Dr. Chiu (rheumatologist) on the support
group. I will ask him.
Donna
Ottawa, Canada
Scleroderma, Raynaud's 01/95, AP 10/97
(My Story) www.compmore.net/~donray
One good way to detoxify and still get full nutrition is on a juice diet,
alternating one or two different juices (fresh from a juicer) per day, with
white grape juice or other fruit juices and lots of veg juices; eat brown rice
too if she feels the need for solid food. Lots of water and baths and soaks
with herbs in the water. Rest and fresh air. Hope this helps. LizG
Querido: Patricia Lopez
Que su madre sufre de la artritis de Rhumatoid y pienso que usted esta
pidiendo esta alli informacion para mejorar el convite su madre para reducir el
dolor ella sufre? Si y el esta en la forma de antibioticos especiales co el
nombre de Minocin y las medicaciones de Ceftriaxone en los e.e.u.u. llamamos
esto los tratamientos de protocolo de antibiot. Espero que esto le ayude para la
informacion.... George.
Dear group,
I've replied to this message but it sounds as though some messages would be
helpful from the group if some of you would like to help?
Some of these doctors make me so angry.
Chris.
Please send messages to pcchia@...
Sheila is not in our group.
Chris.
Please reply by private email as this person is not in our group.
Chris.
From... George
Thanks for the support folks in regards to the Dr. list for the Seattle area in
Wa. I very much appreciate the help. I have been fighting AS for 29 years and
have run the gamet of conventional suppresent meds.... Cheers.... I will monitor
subscribed from here on... Thanks Again...
Hello all,
I am Bryan and I am writing on behalf of my wife, Laura. We have been
unsubscribed for a couple weeks (Email overload). Laura has Sclera and been
on AP now for about 2 years. She had some skin improvement, which was
encouraging and she sees Dr. Franco. We live in Dallas area. The last visit
to Dr.Franco was in Sept. 98. He was concerned about her asthma condition and
currently she is on oxygen 24hrs. (this is to help keep her heart from
overworking)
Seems that winter time is good for breathing but summer is coming and that is
when she is affected the most. Dr.Franco's concern is that her body is
working so hard on the asthma stuff that it can't work on the mycroplasm
(spell?). He recommended seeing an Environmental Dr. here in Dallas. We
went to see him last week. Now this is where I need some help....
He explained that Laura is "chemically overloaded" and she needs to do some
testing and get "detoxified". The testing can take many days but with her
being on oxygen we only have about 4 hours away from the house. (other
possibilities here too but not the problem now) Laura feels that she really
needs to be "detoxified" right away so her body can fight better. The Dr. is
not really gung-ho about this and he wants to do testing first. They don't
take any insurance, which is part of a problem too. We explained the
"treatment" to him but he did not seem to understand the implications. They
think that her "environment" is causing the toxins. I think the treatment is
making more toxins than her body can get flush out.
She hasn't been eating well and last week after her IV treatment she was weak
and the neighbor rushed her to emergency. They gave her some IV fluids until
she felt better and wanted to go home. Since then, I have been stressing the
importance of eating and drinking water.
OK, now, has anybody else had experience with these Environmental Doctors?
Has anybody else gone to see one and then went through the "detoxifing
program"?
Does anybody know of other ways to "detox"? Is it possible for her body to
catch up and flush the toxins or does she have to do a rapid detox? Any
ideas?
Let me add that she is on a vigorous routine of Antibiotics. (1200mg IV Mon
& Thurs. plus 200mg Minocin a day) Any responses before Friday would be
great.
Thanks in advance,
Bryan
Electric Nerve Stimulation Helps Low Back Pain March 3, 1999
<< Percutaneous electrical nerve stimulation (PENS) -- in which
acupuncture-like needles are used to stimulate nerves -- appears to be a
highly effective non-pharmacologic method of relieving low back pain,
according to Texas researchers. PENS provided short-term relief of pain and
improved function in patients who had had low back pain for at least 3 months,
report Dr. El-sayed Ghoname and others at the University of Texas Southwestern
Medical Center at Dallas. Their study findings are published in the March 3rd
issue of The Journal of the American Medical Association. Patients suffering
from chronic low back pain unresponsive to drug therapy are "increasingly
turning to unconventional alternative medical practices," note the
investigators. In their study, the researchers compared the effectiveness of
three of these practices: PENS; transcutaneous electrical nerve stimulation
(TENS), in which shocks are transmitted through electrodes lying on the
surface of the skin; and exercise therapy. In the study, 60 patients suffering
from chronic low back pain were treated with all three therapies for 3 weeks.
Percutaneous electrical nerve stimulation was significantly more effective
than the other interventions for overall reductions in reported pain and the
daily use of pain relievers. The authors write that "91% of the patients
reported that PENS was the most effective in decreasing their low back pain."
"More importantly," they say, "the patients began to report more sustained
beneficial effects on their level of pain and physical activity, as well as
their quality of sleep, after three to four PENS treatments." PENS was also
more effective than the other treatments in improving physical and mental
health and well-being, according to the report. Ghoname and colleagues stress
that further studies are required to better determine the optimal frequency
and duration of PENS, as well as to examine the intervention's effects in
combination with exercise.
Journal of the American Medical Association 1999;281:818-823.
It is essential to take Magnesium with it for proper absorption. There is also
calcium in beans,
broccoli, dark greens and different vegetables and fruits.
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
http://www.keesk.com/forward.htm
--
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 DR. Chiu,
I need to know if Augmentin wil effectively lower my ASO titre. I
finally decided to ask my doc about the RX and he ordered amoxil. At the
same time I started a sinus infection so I figuered that would work. I
have taken 6 days of amoxil and I still have green nasal discharge. I
know amoxil and Augmentin are the same almost sooo can I use Augmentin
instead? Its the only thing that works for my sinuses. If your answer is
yes, will 500mgms bid be OK?? How long should I take it???
Thanks Cooky
Hi All
My sister has severe emphysema and somewhere, I think it was here or on
one of the sites given here. I read about some vitamin or herb, but I
think it was a vitamin, that really helped. I remembered thinking I had
to tell Dot, then brain fog attacked and I can't remember what it is or
where I found it. If anyone read this could they please let me know.
Thank you Julie
Hello everyone! Geoff Crenshaw here.
It is indeed better for all that the alt.support group has somewhat
calmed for the moment. It is unfortunate however, that much of the storm
that brewed there seemed (seems) to have taken root here. As those in
the alt.support group defended their "position", so too do many here in
the AP group effectively doing just what they deride on the alt.support
list.
I receive several posts daily from people who are on (or were on) this
list but who have been effectivle intimidated into not writing about
alternative therapies they are considering, or even using. Perhaps
someday - who knows - perhaps even soon, our own AP group will discover
that we can be supportive of AP consumers as well those who are
"AP-challenged" in the quest for better health for us all.
One of the most interesting items I have noted on this list since my
coming here has been the meds the AP doctors themselves prescribe -
sometimes (gasp) Rx meds like Prednisone and Methotrexate, supplements
like Vitamin A, B, C, even herbal remedies like RA SPES! If these folks
are as good as those in the group seem to believe they are, and if they
all share a common theoretical ground for their pursuit of a cure,
perhaps we should be a bit more tolerant of diffeering views here too.
--
Regards,
Geoff Crenshaw, ACC
I just want to say thanks for all of the great information everyone
provides. Because of the information on this list I became concerned about
my bone density because I have been on and off prednisone for the last 4
years. I asked my doctor for a DEXA scan which he agreed to and I just got
my results back and my spine is in the low normal range and my hips are
below normal (osteopenic). I am 31 and have Lupus and started the AP 2
months ago. I was interested to see if anyone else has tested low and what
was recommended by your doctor to increase your bone density. I have been
trying to follow the diet so have not been eating much dairy.
Any input would be appreciated.
Thanks so much!
Liz H.
Dear Mark Thanks for the info on ICQ, I can't try it out right now, flaring bad
since I took the mino this AM, and would you believe, my kids actually expect me
to fix them 3 meals a day! The nerve! Will download and try it as soon as I feel
better. Going down for a snooze now. Thanks LizG
Al quoted from James Coburn's experience with MSM. There is also a
chapter outlining his story in Dr. Jacob's book. Personally, MSM has
helped me and some others that I know.
I agree with Al that each of us is different and what works for one might
not work for all.
I guess you would just have to go down that road and see for yourself.
Judy (deejay)
When I returned from NZ the book I had on order from Amazon has at last
been released.
It's a worthwhile read to any of us with rheumatoid disease. "THE MIRACLE
OF MSM THE NATURAL SOLUTION FOR PAIN". By: Stanley W. Jacob, M. D., Ronald
M. Lawrence , M.D., Ph.D. and Martin Zucker. Dr. Jacob has done extensive
research on both DMSO and MSM at the University of Oregon Health Sciences
Center. He holds many of the patents on MSM.
I feel this book is more accurate that the other information we have had
available on MSM.
I must correct some of the statements I have made which came from other
sources.
(1) MSM causes the PH in your body to go normal and candida cannot live in
the body if the PH is normal--except in the colon where it belongs - as
the Candida dies out. This is how MSM cures people of Candida. Dr. Jacob
says " We have heard reports about MSM helping people with candida but we
have not personally treated patients with this problem. We are unaware of
any effect on PH. ( I'm back on acidophilus as soon as I read this!!)
(2) Vitamin C keeps MSM active in the system so you should take vitamin C
with it.
Dr. Jacob Says: "Vitamin C is a wonderful substance. We know of no
evidence for any specific role related to MSM.
Folks.....this is a classic example of getting our information from the
company that is going to profit from the selling of the product. Dr. Jacob
holds the patent, but he personally does not manufacture nor sell the MSM
so he wouldn't gain anything by trying to "sell" anyone on the benefits of
it. The book is available from Amazon for $19.95 I really recommend it!!!
Perhaps you could get it from your local library. Judy (deejay)
Carol (HPUMOMl) asked if MSM has sulfa in it. NOT!!! MSM is sulphur not
sulfa.
The homeopathic Sulphur and "Sulfa" drugs are not the same......unless you
speak with a Southern accent!! Sulphur is a mineral, not a drug. sulfa
drugs (sulfonamides) are a class of drugs...not minerals. This
information from Steve Albin, ND and Eileen Nauman, Moderator --Athena List
"The Medicine Garden". The isn't to say that you might be allergic to
sulfa drugs and also to sulphur supplement. There has been a few cases
reported of people allergic to MSM. Judy (deejay)
Sorry guys- brain fog! I am asking about MSM and if it has sulfur in it - I
would love to try it but I am allergic to sulfur antibiotics (septra &
bactrim).
Thanks,
Carol*
I missed most of the posts on MSM- could someone please tell me if this
supplement has sulfa in it?
Also- what dosage daily and should you take it with food?
Thanks again!
Carol*
Hello Group,
I took my 13 year old daughter to a rheumatologist yesterday. He listened
to her list of aches, red eyes, alternatingly sweating than freezing hands,
etc. than thoroughly inspected her joints. He did note some swelling in one
ankle, but her hands, knees and feet looked pretty good yesterday. He
didn't feel she manifest enough symptoms to take immediate action, but he
was concerned enough to draw blood, and we are to check back with him after
we return from vacation. (He also told me to stop feeding her the type II
collagen drink I'd been giving her. His main concern seemed to be possible
impurity in OTC suppliments. Personally, I think the chicken collagen
sounds promising, but I guess we'll quit it for now.) Since I don't
presently have a local rheumatologist (Minnesotan traveling to Boston to see
Trentham), I asked his view on Minocin. I was happy to hear that he is
quite enthusiastic about the antibiotic, and he does prescribe it. (His
eyes actually lit up when he talked about it and asked me how I was doing on
it!)
I am temporarily unsubscribing this afternoon to avoid the avalanche of
e-mails that would pile up while we are gone for the kids' spring break. If
anybody has some amazing information that I shouldn't miss, I would greatly
appreciate having it privately forwarded to me. (Thanks in advance for
that!)
Happiness and ever improving health to all of you!
Kari
You probably have already done this, I just got on the list myself and missed
the beginning of your story..but it doesn't require a doctor who is familiar
with the AP, mine was only slightly so, only a doctor with an open mind who is
not offended when you try to tell him how do his job! Have you collared all
friends, neighbors, workmates, etc and asked them? A doc with lots of
experience might be better but the important thing is to convince Scott and then
get started. Maybe post on some of the medical newsgroups something like Good
Dr needed in Portland, and say in your post that you need someone who has an
open mind because you are considering trying a treatment which some doctors
regard as alternative or unproven, but involves meds which are safe and commonly
prescribed, then you could call some of the replies and run this same request by
their recpt's or nurses and get their reactions as to whether it's worth an
appointment. I know you probably don't have time for all this, I will be glad
to do some of the posting on ng's for you and collect responses if you want to
give it a try! LizG
I'm sorry!
I really meant..
can someone PLEASE help us find a presdribing doctor for AP and anti
anti-inflammatory needed here in Portland, Oregon?
I am to the point of
AURGH-ing to death!
(now, that was a particularly adult response...but then, I am not feeling
particularly mature and adult today anyway.......)
Can anyone tell me if taking oral steroids has the same effects on the body
(damage) and steroid injections- using the same steroid (depo-medrol) and the
same dose? Ex. 60 mg injection at once as compared to 5mg daily over a
period of 12 days?
Thanks,
Carol*