Wednesday, 9 August 2006
|
| "The Plural of Anecdote is Not Evidence" Wayne Marsh 15:05:19 |
| | Here's an op/ed piece from The Wall Street Journal about the scientific
testing of alternative therapies.
Wayne Marsh Minneapolis, Minnesota, USA
waynegmarsh@mac.com
====
No 'Alternative'
By JEROME GROOPMAN
August 7, 2006;?Page?A12
Some 60 million Americans use supplements, megavitamins, herbs and other
so-called "alternative" treatments. Their out-of-pocket costs approach $40
billion a year. Their therapies are promoted by a vast number of self-help
books, Web sites and talk shows that feature thrilling testimonials of
benefits for maladies that mainstream medicine cannot remedy. But we are now
learning what happens when the testimonials are subjected to objective
testing. In February, the results of a large clinical trial of the
supplements glucosamine and chondroitin sulfate for osteoarthritis were
released. These data came on the heels of a rigorous assessment of the herb
saw palmetto for symptoms of an enlarged prostate gland. Both studies failed
to show clinical efficacy. All this should mark a sea change in how the
public views such treatments.
In the first case, some 1,583 patients with symptomatic osteoarthritis of
the knee were randomly assigned to receive glucosamine, chondroitin sulfate,
both supplements, the anti-inflammatory Celebrex, or placebo. The trial was
sponsored by the National Center for Complementary and Alternative Medicine,
NCCAM, and the National Institute of Arthritis and Musculoskeletal and Skin
Diseases. The study found there was no overall statistical benefit except
for Celebrex. Of note, 60% of the patients receiving placebo reported
significant improvement.
This result was greeted without surprise by a colleague of mine who is a
primary care physician. Many of her patients swear by the benefits of the
supplement for their arthritis; and one of them, a woman in her 70s, never
failed to press the physician to take it for her own aches and pains. When
the doctor demurred, the patient eyed her with some disdain. "You doctors
are so close-minded," she said. "You won't accept a treatment that comes
from outside of your own world." One day, a package arrived at her office.
It was a large container of glucosamine, which still sits in a cabinet,
unopened. "Despite all my patients' testimonials, it didn't make sense," she
told me. "Glucosamine is absorbed from the digestive tract and rapidly
broken down in the body. How could this supplement survive digestion, travel
through the circulation, deposit in worn-down joints, and rebuild
cartilage?"
My colleague is a caring and competent clinician, and I was struck by the
barb from her patient about being "close-minded." Most physicians I know
feel triangulated in caring for people who pursue alternative therapies.
Pointed questioning of the probity of the treatments casts the doctor in the
role of adversary rather than ally. Glibly endorsing such therapies may be
politically correct but, in essence, patronizes the patient, since the
doctor has no objective basis to assess the value of the herb or supplement
being promoted for the problem. An honest clinician questions all treatments
-- ranging from an antibiotic from a pharmacy to an elixir from a health
food store -- and asks if they pose real risks, offer real benefits, or
both. When I was a patient with a serious problem of uncertain outcome, I
felt the powerful temptation to seek a magical solution. Most doctors are
sympathetic to this sensibility. But a good doctor distinguishes magic from
medicine.
The widespread misconception among the public is that what is "natural" is
necessarily salubrious and safe, while in fact, the natural world is filled
with poisons and toxins. Some of those natural poisons, of course, can be
used therapeutically: Two of the most important chemotherapy drugs,
vincristine and taxol, are derived, respectively, from the periwinkle plant
and the Pacific yew tree.
The patients I care for with cancer or AIDS take multiple prescription
medications, and how these drugs interact with each other can be no simple
matter; throw into the mix an herb of unclear composition and unknown
metabolism, as well as unknown side effects, and there is a recipe for
trouble. I witnessed this as the first group of pharmaceuticals against HIV
were being tested during the late 1980s. There was a groundswell of demand
among understandably desperate patients for alternatives to medicines like
AZT that can have serious side effects and, as single agents, only modest
benefit. One "natural" alternative was an extract from a Chinese cucumber
termed compound Q. It was imported from Asia and taken by a number of
desperate AIDS patients based on testimonials that it could eradicate HIV.
The fact that the cucumber extract was used as an abortifacent in China
seemed not to register, until several patients developed severe toxic
reactions, including coma. Physicians and researchers who challenged
compound Q were vilified as being ignorant, wed to the
pharmaceutical-medical complex, or envious that a cure had arrived from
outside of "mainstream" medicine.
Then there was St. John's wort. This popular herb was touted as a treatment
for depression and alleged to have antiviral activity in people with HIV. It
was shown to be no better than placebo for depression and, most worrisome,
to interfere with the activity of the lifesaving anti-HIV protease drugs.
That alternative therapies are coming under the sharp lamp of science is of
some irony. In 1991, Congress passed a bill to create an Office of
Alternative Medicine within the National Institutes of Health. Seven years
later, this became NCCAM. Sen. Tom Harkin of Iowa was one of the main
drivers behind the legislation. Mr. Harkin was said to believe that
nontraditional potions and procedures were important therapies, his faith
stemming in part from friends and family who testified to their importance.
A collective groan was heard in the halls of university hospitals and
research centers. Precious federal dollars were being diverted from "real
science" to shamanism. Some alternative medicine gurus also objected,
worried that their therapies would be tested "the NIH way."
The academic opponents were proven wrong -- because the fears of the gurus
came true. The reason for this can largely be attributed to Stephen Straus,
who directs the NCCAM. Dr. Straus is neither a naysayer nor a believer, but
rather a scientist, meaning that he is agnostic about any particular
therapy. Dr. Straus explained that the same rigorous metrics used to
evaluate normal medicine are applied to the numerous unproven alternative
treatments -- "the NIH way." The justification for spending federal funds is
still hotly debated, as evidenced by an impassioned article in a recent
issue of the journal Science, with a call for the Congress to re-examine the
issue. But rigorous testing of popular alternative therapies is a matter of
public health and informs proper medical practice. On the wall of Dr.
Straus's office is a framed quote: "The plural of anecdotes is not
evidence." A billion Chinese cannot be wrong, goes the old saw, but in fact
they can and often are.
But it is not a matter of geography or culture. Until the 19th century,
Western practitioners were badly wrong, attributing diseases to an imbalance
in humors, bleeding patients and prescribing poultices and purgatives.
Modern Western medicine has also embraced therapies that were later
disproven. In the 1960s, surgeons tied off an artery under the breastbone in
patients with angina, believing this increased circulation to the diseased
heart. Many patients swore by the surgery, but when the procedure was
subjected to a clinical trial, it turned out that the sham operation was
equally beneficial.
Placebos are very powerful. Beyond yoga for lower back pain and acupuncture
for analgesia, there has not been a study showing an unequivocal benefit of
an alternative therapy when subjected to the rigor of an NIH trial. This
negative outcome should not be greeted smugly, because most experimental
drugs developed by pharmaceutical or biotechnology companies fail to fulfill
their promise. The difference is that these companies rely on biological
mechanisms to select candidate drugs for testing, rather than
unsubstantiated testimonials and anecdotes.
Dr. Straus believes the public should acquire an historical perspective on
the urban legends of alternative therapy. Beyond compound Q and St. John's
wort, he recalled the euphoria around laetrile, the extract from apricot
pits promoted as a cancer cure, that brought Steve McQueen to Mexico and to
his death, and also the story that shark cartilage caused tumors to melt
away because sharks never develop cancer (not true). On the other hand, one
of the most important new therapies for leukemia is an arsenic derivative
identified in western China as part of traditional practice that resulted in
well-documented remissions; its effects on key molecules in the malignant
cells have been elegantly mapped by scientists. And qualified researchers
are testing components of tumeric and other spices than can inhibit melanoma
and breast cancer cell growth. Science is enthusiastic when it meets
reality.
Still, the failure to prove that so many popular alternative treatments have
any benefit has generated resistance among the believers. The promoters of
saw palmetto objected to the study, saying that the dose and preparation
used in the trial were not optimal. But, in fact, the most frequently used
preparation was the one studied. The clinical trial of glucosamine and
chondroitin sulfate will be extended, but lacking a scientific rationale for
the treatment should lower expectations about a different outcome.
How long does it take for a false messiah to be abandoned when redemption
does not arrive? "Things that are wrong are ultimately set aside," Dr.
Straus said, "and things that are right gain traction. There are the
conflicting tides of belief and fact, and each has its own chronology.
Things don't change quickly, but over time a cumulative body of evidence
becomes compelling." I reflected on this when I read that one major vendor
of saw palmetto asserted he would continue to promote the herb despite the
new data. As science spreads in his world, doubt will chip away at blind
faith, and he will find a shrinking group of believers.
Dr. Groopman is the Recanati Professor at Harvard Medical School.
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| |  6 answers | Add comment |
|
| Psychology of IBD Warmkindsage@Gmail.Com 07:46:23 |
| | Hello again,
Earlier I posted about my grad school "fieldwork" project, which
involves the psychology of IBD, or what I prefer to call the "lived
experience" of those who have Crohn's or U.C. (including myself). I
have received some great feedback, but some have expressed a preference
for some specific questions, rather than just an open-ended request for
input. So I've come up with the following questions. Please, if you're
interested, feel free to respond to any or all of the questions in your
own way. Echoing my earlier post, please let me know if I can quote you
and if so if you would like me to use your real name or a substitute
(pseudonym). Also let me know if you'd like me to send you a copy of my
paper when it's complete.
Thanks so much for your interest.
Yours,
Lisa Cote.
Questions:
* (Please e-mail answers to warmkindsage@gmail.com, and/or post to
group if you'd like.)
1. If you could describe what IBD is from your own experience, i.e.
what it is like to live with it, what would you say?
2. Have you had any dreams that you can remember that relate to your
illness, directly or indirectly? If so, how did you interpret the
dream(s)?
3. If you could picture your Crohn's or U.C. as something--a person,
animal, place, object, anything--what would it look like?
4. Do you feel that your gastroenterologist understands how IBD affects
your life as a whole? Why or why not?
5. How has your personality, self-image, outlook on life, or
perspective changed as a result of your illness, if at all?
6. How does IBD affect the way you relate to others, if at all?
7. What is the worst part of having IBD for you?
8. Do you have a theory on what causes or what triggered your IBD?
9. How do you think others perceive those with IBD?
10. What would you most like non-IBD sufferers to understand about what
it is like for you to have IBD?
|
| | 1 answer | Add comment |
|
| Should I use Remicade or 6MP Cjvitek 01:23:30 |
| | Hi to all,
I am on my second run with crohn's disease(post surgical January 2000).
I have tries asacol, pentasa, and prednisone. My Dr. recently decided
that a medicine change to either 6MP or Remicade was needed. I am
asking for input on which I shuold try.
Any honest input is welcome.
you can reply on the board or e-mail me personally at
cjvitek@earthlink.net
Thanks to all who reply.
|
| | 7 answers | Add comment |
Tuesday, 8 August 2006
|
| Hemorrhoids Treatment. Venapro is a long-term, non-surgical approach to hemorrhoids treatment and re Sunset 20:31:30 |
| | Bring fast effective hemorrhoids relief with this anti-inflammatory
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http://www.venapro.com/?aid=627156
|
| | Add comment |
|
| Ostomyland Weekly Support Chat 5th August Kathy from England 18:02:52 |
| | Main Chat is Saturday 8pm UK Time which is 3pm EST ish.
Have you been told you need an ostomy (colostomy/ileostomy) to deal
with your Crohn's or Ulcerative Colitis?
Maybe you have already had this surgery and are coping with it?
Or maybe a loved one is dealing with this and you want to support them?
We are an ostomy support group, here to help you with both the
practical side of living with your ostomy and the emotional issues.
You will meet people of all ages and with different medical conditions
( not all have IBD).
Some have a reversable ostomy, others a permanant one. We also have
those who have undergone a reversal or a J pouch.
Don't face it alone.
Want to chat another time? The room is open 24/7 and is usually busy.
***NEW*** online clock to help with those time zones!!
Now you can check what time it is in the UK:
http://www.ostomylinks.co.uk/chattimes.html
=========
To join Ostomyland via java go to:
http://www.ostomysupport.info/chat.html (Jason's page)
Or http://www.autoimmunity.co.uk/chat/ostomyland2.html (Kathy's back up
page)
and join us in the ostomyland chat room from there. A free-to-use Java
Client is embedded into the page that is dead easy to use.
Nothing to download.
=========
If you use mIRC, or Besirc or some other IRC Chat Client, here's the
server details you need to connect to Ostomyland:
Server: irc.zirc.org
Port: 6667
Channel: #ostomyland
If you prefer a specially configured version of mIRC is now available
which will take people directly to the new channel on the new server.
Full details and the download link can be found at
http://www.ostomysupport.info/mirc.html
(This is my favourite - mIRC can do so much more!)
WebTV Users, you need to use your own TV based software to join us -
included free as part of the WebTV browser software. Use the server and
port and channel
info when requested by your software to join.
=========
We often have members who have never been in a chatroom before.
Please don't be nervous. These pages will show you exactly what to
expect and what to do. If you're still unsure after you've looked at
them, email me for help. (Kathy-tas (at) ostomylinks.co.uk)
http://www.ostomylinks.co.uk/chathelp14.html
=========
Wrong time-zone for you? I shall be in the room 6pm - 9pm Perth
(Australia) time, 11am - 2pm UK time on SUNDAY.
We usually get a small group in - come and join us.
=========
The channel is open 24/7 for general chit chat or ostomy talk
during the week.
If it's quiet, stay a while - someone else may join the room soon.
=========
Look forward to seeing you in the meeting Saturday night, the weekend
or later on
in the week.
Kathy 
Jason's Living With a Colostomy Website:
http://www.ostomysupport.info
|
| | 4 answer | Add comment |
|
| Psoriasis teatment Amenola 11:38:39 |
| | Hello all!
I can help anybody whos have psoriasis. If you intresting this write
me. 100% guarented. No risk. With best regerds, Svetlana
|
| | 3 answer | Add comment |
Monday, 7 August 2006
|
| pressure/pain/bloating/burping/C Mzb 15:17:09 |
| | Do any of you get those symptoms???
I have had CD in the TI and large colon but these intense upper GI symptoms
are new to me. I'm wondering if the CD has spread higher up??
|
| | 2 answer | Add comment |
Sunday, 6 August 2006
|
| Plantar Fasciitis and IBD Paul 01:42:06 |
| | Has anyone here been diagnosed with Plantar Fasciitis? I was last year
and was given cortisone injections in the bottom of both heels. Boy did
that hurt. It help for about 6 months then my heal pain came back. My
doctor says he doesn't want me to have the injection closer than 12
months apart.
Plantar Fasciitis, which causes severe heel pain, particularly in the
morning or after rest, is a result of inflammation of the plantar
fascia, a thin layer of tough tissue supporting the arch of the foot.
When I hear of inflammation I think of autoimmune and wonder if it is
related to UC. Most of the research I have done indicates that it is
microscopic tears of the plantar fascia that cause the inflammation.
These tears are most likely caused by injury and are more common
amongst runners. I just never have been into running and have not done
any since my UC diagnosis in 2000. The only reference I can find to UC
is that Plantar Fasciitis is sometimes associated with Ankylosing
Spondylitis, a form of arthritis that some UCers may have. I'm just
wondering what others think of this.
Take care,
--
Paul
Visit our photo albums at:
http://www.laflammefamily.ca
http://www.more.laflammefamily.ca
To reply, replace "mail.com" with "laflammefamily.ca"
--
|
| | 11 answers | Add comment |
Saturday, 5 August 2006
|
| CCFA ? Caesarjbsquitti 14:26:12 |
| | CCFA ?
Research
Since its inception in 1967, the Crohn's & Colitis Foundation of
America (CCFA) has been at the forefront of medical research in Crohn's
disease and ulcerative colitis-collectively known as inflammatory
bowel disease (IBD).
There are two main research categories. Basic research explores the
scientific foundations of the diseases. It answers such questions as:
What is the underlying cause of Crohn's and colitis? Which genes are
involved in these diseases? Although basic research is complex and can
be difficult for laypersons to understand, (YOUR SO SMART AND YOU CAN'T
FIGURE THIS OUT...WHY?) these studies will ultimately lead to the cure
for IBD. Clinical research determines which medical and surgical
options work best for patients.
Why CCFA is the Leader in IBD Research
Since its inception, CCFA has invested approximately $115 million in
research worldwide and funded more than 925 grants. We invest our
dollars wisely, (OH REALLY, HOW COME YOUR SITE HAS NO REFERENCE TO
PARASITES - A LIKELY CAUSE OF THIS DISEASE ?) funding the best IBD
research anywhere in the world and implementing a peer-review process
that insures (WE DICTATE WHAT NOT TO RESEARCH) that only the most
promising and relevant grant applications are funded.
|
| | 2 answer | Add comment |
|
| A 'string test" for infections ? Caesarjbsquitti 07:03:23 |
| | If you have a computer look up 'parasites'.... ;)
I came across this interesting bit of information...
The string test ?
http://www.nlm.nih.gov/medlineplus/ency/article/003735.htm
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| | 3 answer | Add comment |
|
| another article from DDW on teduglutide Poo 05:56:43 |
| |
http://www.medpagetoday.com/Gastroenterology/InflammatoryBowelDisease/tb/3368
I know other articles were posted about the same time (late May during
Digestive Disease Week), but I don't think this one was. It's from U of
Penn Med School on May 23rd, so please excuse if you've seen it already.
The accompanying video was interesting as well (more video, Vanny!)
Haven't chatted with you dearies in a bit. Work life is insane at the
moment and I'm cribbing for grad school, which starts Sept. 6, so I'm flying
below the radar these days. On pentasa 2g/day. Still have the old fissure,
but no pain or bleeding, but still sitzing regularly for maintenance.
Iritis has subsided. No arthritis at the moment either. Just the
occasional mild and more rare moderate abdominal pain, especially in the
neighborhood of my ileosecal valve (I'm guessing).
Hope you're all safe from the heat!
Lisa (poo)
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| | Add comment |
|
| bad rash Janetlynnperez 01:09:56 |
| | now, i have erythema nodosum, it looks so gross, and it burns like hell,
does anyone know how long it takes to go away?
thanks
J
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| | 13 answers | Add comment |
|
| Northwestern Online Research Study Guest 00:18:41 |
| | Forum moderator: if permission is required to post research studies,
please contact me at FGIDResearch@northwestern.edu.
Help us better understand and treat Inflammatory Bowel Disease and
other digestive disorders by participating in a brief online study:
Assessment of Psychosocial Factors in Patients with Inflammatory Bowel
Disease, Functional Digestive Disorders and Healthy Controls
The purpose of the study is to evaluate a variety of psychosocial
characteristics in patients with inflammatory bowel disease (IBD),
irritable bowel syndrome (IBS), and healthy individuals. The diagnosis
of IBS is one of the most common diagnoses made by gastroenterologists
(doctors who specialize in stomach and intestinal function). IBS is a
disorder of the brain-gut function which can lead to severe impairments
of gastrointestinal function. The diagnosis of IBD is less common, but
many of the symptoms that IBD patients experience are similar to
patients with IBS. This study will involve completing 8 online
questionnaires, and should take you approximately 30 minutes to
complete.
To participate, please click the following link:
https://205.144.64.58/apps/nworkprod/generalqs/consent.aspx
If you are prompted to accept a certificate, please do so to proceed to
the study page.
About Northwestern Center for Functional Digestive and Motility
Disorders
The Northwestern Center for Functional Gastrointestinal and Motility
Disorders was created to provide comprehensive evaluation and treatment
for patients with difficult and often poorly explained digestive
symptoms. Our center offers state-of-the art diagnostic capabilities
for digestive disorders. More importantly, we pride ourselves in
performing the one procedure that receives the least attention in
medicine: listening. Being heard is incredibly important for people
dealing with difficult symptoms. But listening also provides the
greatest opportunity to unravel complex medical problems. At the
Northwestern Center for Functional Gastrointestinal and Motility
Disorders care is provided for the person and not just the digestive
tract.
Our mission is to advance the understanding and treatment of functional
gastrointestinal and motility disorders through an integrated approach
to patient care, research, training and education. In addition to the
evaluation and treatment of functional and digestive motility
disorders, we also conduct studies on the physiological and
psychosocial mechanisms that often underlie these conditions. Our group
has clinical and research interests in quality of life, health outcomes
and stigma related to functional and digestive motility disorders as
well as novel pharmacologic and behavioral therapies to treat these
conditions.
http://www.northwesternmotility.com
|
| | 2 answer | Add comment |
Friday, 4 August 2006
|
| Comfortable and Discreet Stoma Pouch Support Sysyem John Sumption 21:00:37 |
| |
Inexpensive, comfortable and discreet, and will help you pursue a more
active lifestyle.
... "prevents an ostomy 'silhouette' from showing through clothing, ...sleep
without having to worry about a bag moving around, and it prevents many bag
breakages. It makes the bag go from having an obvious 'always there'
feeling, to being virtually unnoticeable."
See it at http://www.ostomysupportsystem.com/index.html
P.S. - I have NO financial or any other business relationship with this
company.
I personally recommend the Phoenix Ostomy Support System because it's a good
idea and fills such an obvious need - why doesn't EVERY ostomy pouch come
with its own support system to help "integrate" it into normal daily living?
Makes no sense.
Well, fortunately SOMEONE (Kerry Gallo - 1995 ileostomy) took the initiative
and created this simple but very effective support which makes such a big
difference in comfort, self-confidence, activity and even intimacy!
I do hope you'll have a look at this simple system and see if it will make a
big difference for you too.
I wish you all the best.
J.S.
|
| | Add comment |
|
| Re: Kind funny isn't it? Dj 06:40:15 |
| | Dear Paul.
Sorry to hear this, but glad that they are doing something about it.
Just a warning though, conventional thyroid wisdom is that no amount of
synthroid (or it's cousin levothyroxine) will get the thyroid stable
until your adrenals are back up to snuff. Hopefully your app with the
endo is soon.
Also funny is that prednisone can suppress the thyroid hormones making
it look like a normal thyroid is hyperthyroid so if your labs came back
that you are hypo...can you imagine what the levels really are? Yikes.
I have a strong family and personal history of thyroid problems and the
first thing my endo asks when she looks at my labs cause she knows
about my colitis is "are you on pred right now?"
It's all connected. Autoimmune is autoimmune. Fun, fun. NOT!
Diane
Paul Hinman wrote:> Hi folks!>
I have been suffering from abrasions on my buttocks from dragging my> butt on the ground.> It turns out that there are a few reasons for this. My lungs are kind> of fluky so I am back on full time oxygen again and my primary care> provider did some blood work. It turns out that I am marginally> hypothyroid so he started me on a minimal dose of synthetic thyroid> hormones and we will see what happens.> It also turns out that my adrenals are producing very little cortisol,> the result of long term prednisone usage suppressing my adrenal glands.> He is sending me to se an endocrinologist. It turns out that the> treatment for the condition, which is brought in by prednisone usage, is> to increase the prednisone dosage.> It is kind of funny, I think, sort of, if you know what I mean.> Paul
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| | 1 answer | Add comment |
|
| Rash around __m JohnH 01:35:24 |
| | Lately I have a rash around my __m. I thought it may have been caused by
wet -wipes, but I've had a bit of D lately also. I've tried antiseptic cream
and tonight I tried tea tree oil. Does anyone know of a product I could get
over the counter?
Thanks John
|
| | 2 answer | Add comment |
Thursday, 3 August 2006
|
| Request for input: IBD project - psychology of illness Guest 23:46:29 |
| | Hello everyone,
My name is Lisa, and I'm a student at Pacifica Graduate Institute
(Depth Psychology program). I'm doing my "summer fieldwork project" for
school on the topic of IBD. Yes, I've had Crohn's myself (originally
diagnosed as U.C.) for thirteen years now, and most of those years were
spent dealing with a very active disease. Only over the last four years
have I been in a significant remission, thanks to Imuran.
My journey with IBD has been difficult --I have stuggled with denial,
been consumed with promises of "natural cures" that have wasted my
time, money and energy, endured the collapse of my marriage and the
erosion of my sense of self worth. For a long time I felt my body was a
prison from which there was no escape; the only respite came from sleep
and dreams, if I was lucky enough to get a decent several hours of
rest. Having confessed all this, I do also believe there were and are,
for me, some spiritual gifts inherent in the experience of the disease.
I'm interested in what you have to share about your experience of IBD,
whatever that is: what it feels like, what you think about it, how it
affects you socially, what it means to you. Besides descriptions of
your experience, I invite you to share dreams, poetry, artwork and any
other forms of expression you wish that relate to your experience.
One of my particular concerns is the notion of healing versus cure, and
what this means in a psycho-spiritual sense; along with that will come
a consideration of the Western medical approach to IBD, compared with
other healing traditions and philosophies. So your input about doctors,
the medical system, procedures, etc. would be welcome too.
If you decide to respond please let me know which of the following
rules you would like me to observe regarding your contribution:
1. Quote your and/or use your material as I need to for my paper,
protecting your identity with an assumed name.
2. Quote you and/or use your material as I need to citing your real
name.
3. Refrain from quoting you or using your material in my paper.
Note: If you would like to read my paper, please indicate this to me an
I will arrange to send you either an electronic or hard copy this
coming fall.
You can send me your input via e-mail at warmkindsage@gmail.com; if you
could put IBD in the subject line, that would be great. Or, if you feel
comfortable posting your feedback here to share with everybody, that
would be fine as well.
I know from personal experience that it is both cathartic and,
sometimes, deeply upsetting to open up about the experience of IBD.
Please do not feel compelled to contribute if you think doing so would
be more wounding than healing to you; and if you do feel that
contributing would be helpful to you, still consider having a support
system in place in case you need it.
Thanks so much for your interest.
Yours,
Lisa Cote.
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| | 4 answer | Add comment |
|
| UC and remicade? interested in comparing notes... Guest 04:24:08 |
| | hi my name is christine - i have come and gone many times before on
this usergroup and am back again. I have had uc for about 8 years and
have gone through most meds - and several attemps of the scd diet.
Usually i do well on cipro and flagyl - but had to stop bc i was
pregnant and nursing. Now I am not able to get "well" again. I have
tried all the 5-asa type drugs - rowasa, pentasa, colozal, asacal, etc.
etc. - and really can't tolerate them. I usually need a low dose of
prednisone if i am not on antibiotics. Now i am adding in enemas
(hydrocortozone) - but still not quite myself.
That is my background - i have not taken 6mp or imuran before. now i am
not too too bad off -just pretty extreme urgency and slightly increased
frequency (maybe 4/5 trips to the bathroom) but i feel lousy and am
having a hard time keeping up with the level of activity that my kids
keep me at.
What i am interested in knowing is whether anyone with a similar
profile to mine has tried remicade? i am wary of it - as I am of 6mp
and imuran. I hear that it works well - so i would rather go right to
remicade rather than spend time trying to figure out if 6mp works -
esp. since i don't seem to respond well to most colitis drugs. (every
gi is shocked how well i do on cipro and not on asacol - bc that is
more chron's like..)
any thoughts/ insights/ advice on this?
also just for the record - my oldest son has a severe milk allergy...
not sure if that has anything to do with me... but no one on either
family seems to have a history...
thanks in advance for your time!
christine
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| | 3 answer | Add comment |
Wednesday, 2 August 2006
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| Re: UC and remicade? interested in comparing notes...my Guest 19:33:51 |
| | I used to have the gotta go problem lactose intolerance and other food
allergies like wheat. How I got rid of it was easy. I discovered that
farmers started using antibiotics for rapid weight gain and growth in
all farm animals. This caused an overgrowth of bacteria in other farms
so to solve that problem they started spraying antibiotics on fruits
and vegetables. I went organic. I am allergic to antibiotics and always
have been. After I went organic all of my symptoms went away. I eat out
about once a week and that is the only time I feel very thirsty and it
is the only time that I am getting out of bed in the middle of the
night to use the bathroom. My allergy to wheat is nonexistant. My
lactose intolerance is also nonexistant. I went to my doctor and told
her what I had discovered and wanted to know why she hadnt told me
about the crap in the food that she knew I was allergic to as my
doctor. She got mad and walked out of the office. She is no longer my
doctor. And other than a lazy gall bladder from eating to low fat. My
health is 100% better and I feel good. I do not feel exhausted any
more. I hope this helps you.
cpolek@comcast.net wrote:> hi my name is christine - i have come and gone many times before on> this usergroup and am back again. I have had uc for about 8 years and> have gone through most meds - and several attemps of the scd diet.> Usually i do well on cipro and flagyl - but had to stop bc i was> pregnant and nursing. Now I am not able to get "well" again. I have> tried all the 5-asa type drugs - rowasa, pentasa, colozal, asacal, etc.> etc. - and really can't tolerate them. I usually need a low dose of> prednisone if i am not on antibiotics. Now i am adding in enemas> (hydrocortozone) - but still not quite myself.>
That is my background - i have not taken 6mp or imuran before. now i am> not too too bad off -just pretty extreme urgency and slightly increased> frequency (maybe 4/5 trips to the bathroom) but i feel lousy and am> having a hard time keeping up with the level of activity that my kids> keep me at.> What i am interested in knowing is whether anyone with a similar> profile to mine has tried remicade? i am wary of it - as I am of 6mp> and imuran. I hear that it works well - so i would rather go right to> remicade rather than spend time trying to figure out if 6mp works -> esp. since i don't seem to respond well to most colitis drugs. (every> gi is shocked how well i do on cipro and not on asacol - bc that is> more chron's like..)> any thoughts/ insights/ advice on this?> also just for the record - my oldest son has a severe milk allergy...> not sure if that has anything to do with me... but no one on either> family seems to have a history...> thanks in advance for your time!> christine
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| Symptoms I've not come across before Crag 19:09:21 |
| | I have had CD for about 8 years with only about 4 flare-ups.
Recently though as well as the spasms and cramping I have found myself
needing to swallow a lot (like I have phlegm from a cold - which I don't)
and have sharp pain in the small of my back and around the kidney areas.
Ibuprofen seems to help for a few hours but the pain comes back as bad as
it was before.
Could this be Crohn's related (directly/indirectly) as I've never heard of
this type of related condition before?
I am due to see my consultant in 10 days (he's on holiday until then!).
Thanks all...
--
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| | 6 answers | Add comment |
Tuesday, 1 August 2006
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| ot: granddaughter Jeff and Mary Berk 22:49:47 |
| | new grandparents here for the first time. oldest daughter had alyssa mary
at 5:22pm today, 6 lbs, 10 ozs, 21 inches long, red hair (runs in fathers
family). momma and baby doing great.
jeff
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| | 14 answers | Add comment |
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| Degenerative gastrointestinal diseases / functional foods Ironjustice@Aol.Com 15:56:52 |
| | Lecithin is phytic acid in liquid form ..
Since lecithin leads to such .. HIGH remission / recovery rate .. it
may be related to the fact it .. IS .. an iron chelator ..
<<snip>>
The rate of clinical remission and CAI
improvement was 90% in the phosphatidylcholine group
<<snip>>
http://tinyurl.com/gr9ej
Phytic acid IS an iron chelator and since lecithin ALSO has been
reported .. somewhere .. to BE .. an inhibitor of iron absorption ..
again .. points to iron .. and its .. bad .. b-a-d .. effects ..
---------------------------------------------------------------------------ВВ-----
http://ift.confex.com/ift/2003В/techprogram/paper_20398.htm
76B-2
A proteomics approach to the study of phytic acid inhibitory activity
against
angiogenesis
R. R. BANSODE, M. Ogawa, and J. N. Losso. Dept. of Food Science,
Louisiana
State Univ. Agricultural Center, 111 Food Science Bldg., Baton Rouge,
LA
70803-4200
Angiogenesis-the formation of new blood vessels from a quiescent
endothelium-
has been identified and recognized by various multiple disciplinary
studies as
a safe target for the prevention of the onset and/or complications of
several
degenerative diseases because angiogenesis is an oncofetal mechanism
that is
mostly down regulated in healthy individuals. Vascular endothelial
growth
factor (VEGF), acidic or basic fibroblast growth factor (aFGF, bFGF),
and
metalloproteinases are key mediators of angiogenesis. The rationale of
designing anti-angiogenic functional foods is that they are safe,
effective,
reversible inhibitors, and can be moderately ingested over a life span
without
severe toxicity. Phytic acid is present in rice bran and has gained
considerable attention in functional foods research as a compound that
could
reduce the risk of several neoplastic diseases because of it inhibits
enzymes
associated with the degradation of the basement membrane that leads to
metastasis and eventual painful death. We have previously demonstrated
the in
vitro inhibitory activity of phytic against metalloproteinase-2 and -9
(MMP-2
and MMP-9). Phytic inhibits angiogenic factor tyrosine kinase receptor.
The
objective of this research was to demonstrate the in vivo inhibitory
activity
of phytic against angiogenesis. Trypsinized human umbilical endothelial
cells
(HUVEC) were treated with various concentrations of phytic, incubated
overnight
at 37oC in a 5% CO2 humidified atmosphere and observed for tube
formation. In
vivo angiogenesis was performed by incubating various concentrations of
phytic
with fertilized egg yolks using the CAM assay. Phytic acid (100 nM)
completely
inhibited tube formation by HUVEC. Phytic acid (100 nM) inhibited the
formation
of new blood vessels in the growing chicken embryo. These data and
previous in
vitro results from our laboratory, and epidemiological studies
demonstrate that
phytic acid at moderate concentration **may be considered as functional
foods for
the various forms of degenerative diseases of the gastrointestinal
tract. **
Who loves ya.
Tom
Jesus Was A Vegetarian!
http://jesuswasavegetarian.7h.com
Man Is A Herbivore!
http://tinyurl.com/a3cc3
DEAD PEOPLE WALKING
http://tinyurl.com/zk9fk
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| | 12 answers | Add comment |
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