Drs appt Wednesday, Help!

2006-08-31 19:12:06

This may be a duplicate. I sent one, but I think to the wrong address. I
have an appt. tomorrow at the rheumatologist and I need to decide if now is
the time to start antibioitcs. I have had positive RF for two years, and sed
rate has been normal till three weeks ago when it was 32 (RF=160's). I have
been fairly asymptomatic till now, taking tons of supplements and a very
strict diet. I travelled and went off the diet for the first time, and I also
took Prosac which I was allergic too and caused joint pain and rash. Went off
that, got better, then flare returned in both knees, both wrists,
elbows,fingers. Then got serious with diet again and took Relafen, 500mgs,
twice a day for a week, and stopped working out on a treadmill, and I seem to
be calming down now physically, with only left outer knee mildly sore, and two
fingers on left and left inner ankle. (they all seem to be subsiding).
Doctor will give me MInocin, but so far (knock wood) I was fortunate and he
did not think I should take it since I had no symptoms to speak of. I want to
know if this is the time to start even though I seem to be getting better,
doing what I'm doing. I am seeing the doctor tomorrow, and I will be able to
pick up messages till 12:45pm Eastern Standard Time. Doctor is after that.
Any advice, opinions about whether to ask for the Minocin now or what would be
appreciated.
Be well, and thanks,
SEG14@...

thought for the day

2006-08-31 19:06:44

Hi Bev and fellow AP patients...
Cindi here...the one who's had RA for 42 years and MUCH better since starting
the AP in Dec/96. It's SO true about "better days ahead"...it also reminds me
of something my neighbor said to me last summer. Here's the story: My elderly
neighbor and his wife had an 'accident' in their home...the dear lady was
cooking and a small fire started and burned her hand. The fire department and
the ambulance were called and our block had a 'little' excitment, but everyone
was fine. The next day when my husband spoke to the senior citizen and told
him he was sorry for the bad day he had had...the old man said "there's no
such thing as a 'bad' day, some days are just better than others" I love that
line and now try NOT to use the expression "bad" days...after all I'm sure
there is something good in every day...we may just have to look a little
harder. good luck
Cindi/Iowa RA 42 yrs AP 26 months
<<
Mark thanks for the boost. I guess it is a long road for all of us. The
downs are really down and the ups are all the better. When you feel good
you can't imagine you will ever be stiff and sore again making it all the
worse when it hits. I think you are absolutely right when you say better
days are ahead. You are getting there and give us all hope when we get
impatient.
I like to think of that lady who is better who had RA for 42 years. Cindi
I think. Now there is a success story for all of us.

mail weirdness?

2006-08-31 08:16:34

I keep getting occasional mails from group people sent to other people. They
dont have my name as a CC and appear to be meant for that other person alone.
Anyone else having this happen?
Sarah
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Lots of arthritis and health links:
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Oral clindamycin

2006-08-31 00:40:01

Especially important to make sure you're taking acidophilus and looking
after the gut. Oral clindamycin plus oral minocycline/doxycycline is
going to kill off even more gut flora than mino/doxy alone.
Chris.

Ugh -- diet

2006-08-30 22:17:57

Hey group! I am having the WORST time getting back on track with the diet! I
went off of it when I went, of all places, to see Dr. Mercola in Chicago 2
weeks or so ago. He asked how it was going, and I said "this weekend, bad,
but before that, fantastic". I was really doing so very, very well. No
sweets, no dairy, no breads or starches. Meats, veggies, beans, nuts and
seeds. But since I went off, I haven't been able to get back on! I'm not
eating too badly, but not too good either! Oh, it's tough, but I just know I
feel better when I eat right, so why don't I do it? It's self-defeatist, and
that's not good. Well, just needed to share with someone who'd understand.
Thanks for listening (reading :-) Hope you all find yourselves healthier than
you were last week, and even better next week!
Maria

losing battle

2006-08-30 18:58:20

Hi to all,
I feel as though we fighting a losing battle. Mike went to the Dr.
Saturday and he put
him on methotrexate. Told him to stop everything else, including the
minocycline. Didn't even give him a refill for the prednisone, just
supposed to cut down the dosage "because once the metho kicks in he
wont' need anything else". Mike is looking for a miracle and I am
afraid that this is not it. He had been on the ap for 2 yr. with no
improvement.
We are located in upstate NY Are there any AP doctors in our area? I am
sure going to try and find another dr that is more knowledgeable in the
AP because I don't have much faith in the metho.
Thanks for listening,
Sherry

ARTICLE ON FLAVONOL RESEARCH

2006-08-30 16:24:41

<<Scientists have discovered the secret of a healthy diet - chemicals which
occur naturally in the skin of small, thick-skinned fruit and vegetables.
The research could be a factor in why people who eat a Mediterranean diet live
longer. Scientists from Glasgow University have found that some fruits and
vegetables have more flavonols than others. Tiny cherry tomatoes have many
more of the chemicals than bigger tomatoes, for example. Red onions are full
of flavonols while the white version has almost none. Red-coloured Lollo
Rosso lettuce has 100 times more flavonols than ordinary lettuce. Dr Alan
Crozier, reader in plant biochemistry from the Institute of Biomedical and
Life Sciences at Glasgow University, said: "What our data shows is there is a
surprisingly wide variation of flavonol levels in very similar products.
Supermarkets may seek to promote flavonol-rich produce"A tomato is not just a
tomato - there are different types. You can select a different variety and
your flavonol content will increase dramatically." He added that the research
showed that people could increase their flavonol levels and their health with
a relatively simple change in diet. Flavonols work by mopping up free
radicals in the body. These are by-products of the body's chemistry and
destroy cells and their DNA. Scientists are only just beginning to understand
the role of flavonols. And unlike many vitamins, the chemicals are not
destroyed by cooking. They even remain after boiling, although in lower
levels. "You can fry the hell out of your tomatoes and still get 75% of your
flavonols present," said Dr Crozier. He and his team are working with
supermarket chain Safeway to develop a comprehensive list of flavonol-rich
food. A spokeswoman from the British Nutrition Foundation said the research
was further proof of the benefits of eating fruit and vegetables. It
recommends five portions a day. "Fruit and vegetables have an enormous
benefit for the diet. You cannot go far wrong with them," said the
spokeswoman. As well as flavonols, fruit and vegetables contain other
antioxidants, including vitamins A, C and E. And tomatoes - particularly
processed tomatoes - contain lycopene. The spokeswoman, however, said it
would be worrying if interest in antioxidants led to people rushing to buy the
chemicals in pill form. "The dietary approach is best as we do not know what
concentrations are in fruit and vegetables and which is the most beneficial,"
she said. Dr Crozier agrees: "You can get antioxidant pills from the chemist,
but what is in them is not the same as what is in fruit andvegetables."

bye-bye

2006-08-30 05:19:15

Here it is.....I'm off to NZ to see and HUG lisbeth. This is my last
post....I'm unsubscribing.
So long - I outta herrrrrrrrrrreeeee!!!!!!!!!! Love, Judy

co-habitants of New Jersey

2006-08-30 04:30:14

Hi gang,
It's me again, I've been lurking for a few days, and see that everyone is
doing fine, and Lisbeth is still up to trouble(silly grin), must be feeling
good, huh?
I have a plea for some comorardery, for a friend in New Jersey. She has
recently seen Dr. Whittman, thanks to the group here! The doc put her on
50mg minocin(daily) AND 50mg. doxycycline(daily), so she is hurting'.
The poor thing has had RA for only 4 years and is wheelchair bound. I know
what that's like as do alot of you....my request is that someone that lives
near to her, could maybe call her by phone. She needs a 'shot in the arm'
so to speak! At least we have access to a computer and can speak to each
other for an uplift, occasionally! She got my name from her son, who lives
in North Carolina( I think brain fog). She has read " The Road Back" but
still has the need to talk to others about the AP.
So anyone that would like her phone # , please e-mail me back :-)
I thank-you all so much for being there for me (GROUP HUG)!!
Janine Osberg

JOKE: Y2K

2006-08-29 21:53:52

Dr. Mercola would appreciate this one -:) -
Taken from a memo received at a Fortune 500 company -
To: VP, Corporate Administration
I hope I haven't misunderstood your instructions, because this Y to K
problem makes no sense to me.
Be that as it may, I have completed the conversion of the corporate
calendar for the year 2000, per my understanding of the instructions.
The months now read as follows:
Januark
Februark
March
April
Mak
June
Julk
etc.
Please let me know if there is anything else that needs to be done in
preparation for the year 2000.

clindamycin

2006-08-29 11:13:29

A while ago, there was some discussion on the different methods of taking
clindamycin. My original understanding was that the order of effectiveness is
IV, IM and oral. Several people wrote me with suggestions of what they have
found to be effective.
Now, a few things about my situation. I have been on Minocin since November 97
and after a 5 month herx started improving. I now have more energy than I've
had in years. Last July, I had a 5 day series of Clindamycin IV's followed by 5
weekly IV's. In October I had knee replacement surgery. My doctor recently said
in a couple more months (to give more recovery time from the surgery) he would
be willing to give me another 5 day series of Clindamycin.
As a result of all of this, I have several questions:
1. Is the order of effectiveness still considered to be IV, IM, and oral?
2. My veins are small, rather fragile and love to go into hiding as soon as
anyone approaches to start an IV. My last few treatments last summer were
difficult. Should I avoid the IV's?
3. When I asked about the injections, my doctor said they are extremely painful
(which immediately made me nervous about having him give them to me). Ray and
others said they don't have to be painful if given properly, and Ray gave me
some suggestions. Would it be better, considering my veins, to have the
injections?
4. Someone told me the oral could be given the same way as the IV series i.e.
300 mg for 2 days, 600 mg for the next two days, and 900 mg the last day? How
effective is this approach?
I would appreciate any suggestions you could give me.
Linda
(RA 20+ yr. AP 15 mo.)

Crohn's disease

2006-08-29 07:46:46

Does anyone know if the low dose antibiotic therapy has been used on people with
Crohn's disease? My husband has RA and last year I was diagnosed with Crohn's.
I believe I may have found a doctor to treat him but I need one to treat me
also.

mycoplasma testing

2006-08-29 01:16:37

Why are there only 3 labs that are able to perform this test? Does it require
special equiptment or what? I am just curious......
Nancy

Dr. Markus' address correction

2006-08-28 21:21:41

Group,
I think I sent you an error in Dr. Markus' address earlier today. For those
of you interested in sending him information on Juvenile RA and mycoplasma
infection, here is the correct address: markus@...
thanks
XOOX
Colleen

" Word" - Not an illness comment

2006-08-28 08:41:34

Jan,
Can you recall how you learned "lethologica"? (pun intended). I long, long
ago had three courses in Latin/Greek elements in English offered to young people
in the Ozarks hills to improve their vocabularies. This word escaped a very
stern instructor, one of those persons you remember a lifetime.
It is not in my regular dictionary, but a librarian at the public library
found it. Just interested in your history with it.
Thanks!
Pat K.

Medarex clinical trial

2006-08-28 06:43:29

MEDAREX'S FIRST FULLY HUMAN ANTIBODY PRODUCT ENTERS RHEUMATOID ARTHRITIS TRIAL
Story Filed: Thursday, January 28, 1999 07:04 AM EST
ANNANDALE, N.J., Jan. 28 /PRNewswire/ -- Medarex, Inc. (Nasdaq: MEDX) announced
today that MDX-CD4, the Company's first
entirely human antibody product, has entered Phase I clinical trials for the
treatment of rheumatoid arthritis. The multi-center,
double-blind, placebo-controlled study is designed to assess the safety profile
of a single dose of MDX-CD4 in patients with
rheumatoid arthritis.
MDX-CD4 is being developed in partnership with Eisai Co., Ltd. of Japan.
MDX-CD4, a human monoclonal antibody designed for the
treatment of rheumatoid arthritis and other autoimmune disorders, was created
using Medarex's proprietary HuMAb-Mouse(TM)
technology.
Medarex's HuMAb-Mouse technology, a transgenic mouse system that creates
high-affinity fully human antibodies instead of mouse
antibodies, uses standard, well proven laboratory techniques, to produce these
antibodies in a matter of months. Medarex has ten
on-going corporate partnerships based on the HuMAb-Mouse technology.
"Moving the HuMAb-Mouse to the clinic is a major milestone," said Donald L.
Drakeman, President and Chief Executive Officer of
Medarex. "In addition, CD4 is a promising target for the treatment of rheumatoid
arthritis, which affects approximately 2 million
Americans."
Medarex is a biopharmaceutical company developing monoclonal antibody- based
therapeutics to fight cancer and other
life-threatening and debilitating diseases. The Company has developed a broad
platform of patented technologies for antibody
discovery and development, including the HuMAb-Mouse(TM) system for the creation
of high-affinity human antibodies; Bispecific
antibodies, which enhance and direct the body's own immune system to fight
disease; and immunotoxin technology. Medarex has
six products in clinical development for the treatment of cancers and leukemia,
autoimmune diseases and ophthalmic conditions. For
more information about the company visit its web site at www.medarex.com.
Certain statements in this press release consist of forward-looking statements
that involve risks and uncertainties including, but not
limited to, uncertainties regarding the progress of on-going clinical trials and
the continuation of business partnerships. Actual
results, events or performance may differ materially.
SOURCE Medarex, Inc.
01/28/99
CONTACT: Donald L.
Drakeman, President and CEO of Medarex, Inc., 908- 713-6001; or Kimberly Hofman
of Middleberg + Associates, 212-888-6610, ext.
544, kim@..., for Medarex
Company News On-Call: http://www.prnewswire.com
comp/108265.html or fax, 800-758-5804, ext. 108265
Web site: http://www.medarex.com
(MEDX) CO: Medarex, Inc. ST: New Jersey IN: MTC HEA SU:
Copyright © 1999, PR Newswire, all rights reserved.
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Lots of arthritis and health links:
http://www.geocities.com/SoHo/Gallery/6412/supportlinks.htm

Zinaxin herbal

2006-08-27 23:41:23

Story Filed: Thursday, January 28, 1999 08:37 AM EST
for Joint Health;
Zinaxin: Clinically Proven Product Now Available in U.S.
Sold in 30 Countries, Herbal, No Known Side Effects
MILFORD, Conn., Jan. 28 /PRNewswire/ -- FreeLife(TM) International announces the
immediate U.S. availability of Zinaxin(TM), a
natural herbal dietary supplement clinically proven to promote joint health.
Developed in Denmark, Zinaxin(TM) has been used to
promote joint health by millions of people around the world for more than four
years, without the gastric distress frequently
accompanying both prescription and over-the-counter treatments. Many users have
reported a difference within 2 weeks. Three major
human clinical trials have confirmed Zinaxin's(TM) positive results.
lion Americans suffer from joint discomfort and more than half have some form of
arthritis (Arthritis Foundation 1998). As the "Baby
Boomers" begin to turn 50 years of age, the incidence of joint discomfort as
well as arthritis is expected to skyrocket. In addition, as
the practice of strenuous exercise continues to increase -- especially among
women -- sport-related joint discomfort will continue to
gain attention. Currently, there are nearly 43 million regular exercisers in the
U.S.
Zinaxin(TM) was created after six years of research and millions of dollars in
development costs. It is in the form of an easy-to-take
softgel which should be taken twice a day. Zinaxin(TM) is not available in
retail outlets. People interested in getting more information
on Zinaxin(TM) or ordering the product can do so by calling 1-888-811-4787 or by
visiting the Zinaxin(TM) website at jointhealth.com.
Cost for a month's supply is $39.95.
A unique and pharmacologically stabilized formulation of gingerols, extracted by
a patented process from natural ginger root, is the
basis for Zinaxin's(TM) biological activity. While more than 200 species of
ginger were evaluated, only two species were found to be
effective. They are used in Zinaxin(TM). These phytochemicals inhibit the
formation of prostaglandins responsible for short-term joint
discomfort and counteract the formation of destructive leukotrienes. Zinaxin(TM)
also exhibits strong antioxidant activity and
counteracts free radicals, which play a role in the inflammatory process.
Exciting new studies have shown that Zinaxin(TM) inhibits
the formation of TNF Alpha and IL1 Beta, which are both involved in poor joint
health. Clinical trials in Denmark and Singapore have
shown Zinaxin(TM) to be effective in lessening discomfort connected with poor
muscle and joint health, and recent pharmacological
studies have indicated that Zinaxin(TM) may be a catalyst for improved cartilage
health as well.
Although ginger has been recommended by natural health practitioners for over
4,000 years to treat pain, rheumatism and other
medical problems, recent research has determined that only two species contain
effective biological compounds. Additional scientific
analyses have shown that most ginger extracts are not well absorbed in the
digestive system. However, Zinaxin's(TM) patented
extract (called EV.EXT(TM)77) ensures that these unique species of ginger are
easily absorbed...without gastric distress.
SOURCE FreeLife International
01/28/99
CONTACT: Linda Logue of Applied Biometrics, 561-287-7252, for FreeLife
International
Web site: http://www.jointhealth.com
CO: FreeLife International ST: Connecticut, Denmark IN: MTC SU: PDT
Copyright © 1999, PR Newswire, all rights reserved.
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Synvisc is for OA of knee

2006-08-27 22:12:40

SYNVISC(R) SHOWN TO BE EFFECTIVE NOT ONLY IN RELIEVING PAIN,
Story Filed: Thursday, February 04, 1999 02:51 PM EST
But Also in Delaying Need for Total Knee Replacement Surgery
in Patients with Osteoarthritis
- Each year, nearly 225,000 Americans undergo the operation,
costing over $4 billion -
ANAHEIM, Calif., Feb. 4 /PRNewswire/ -- Results from a clinical study show that
Synvisc(R) (hylan G-F 20), a treatment for
osteoarthritis of the knee, provides sufficient pain relief to delay or avoid
the need for total knee replacement surgery in 72.6 percent
of patients. These findings were presented today at the annual meeting of the
American Academy of Orthopaedic Surgeons (AAOS).
"Many people who suffer from osteoarthritis of the knee require surgery to
alleviate their pain and restore their mobility," says Edward
H. Miller, M.D., the principal investigator of the study and an associate of
Wellington Orthopaedics and Sports Medicine in
Cincinnati, Ohio. "These data suggest that Synvisc not only can relieve pain,
but also may enable patients to avoid surgery."
Synvisc is used to relieve osteoarthritic knee pain in patients who do not get
adequate pain relief from simple painkillers (nonsteroidal
anti-inflammatory drugs, or NSAIDs), cortisone injections, or from exercise and
physical therapy. It is derived from natural
hyaluronan, the lubricant found in normal joints, and aims to restore the
natural elastic and viscous properties of the healthy synovial
joint fluid to that of an 18- to 27-year-old.
"These results show that viscosupplementation - the term used to describe this
type of treatment -- effectively relieved pain in
patients who did not respond to traditional osteoarthritis treatments," says Dr.
Miller. "Clearly, these data confirm that Synvisc is a
powerful weapon against osteoarthritis of the knee."
Osteoarthritis, a chronic, progressive disease of the joints, is one of the
leading causes of disability for Americans over age 50.
Nearly 16 million Americans have osteoarthritis, including 13.7 million with
osteoarthritis of the knee, making it the most common
form of arthritis in the United States. In 1995, nearly 225,000 Americans
underwent total knee replacement surgery, at a cost of more
than $4 billion, or approximately $20,000 per operation.
Clinical Trial Results
The trial was a prospective, single-center study, involving 108 patients (56
women and 52 men) of an average age of 62 years. Eligible
participants included patients with osteoarthritis in one or both knees who
either failed to satisfactorily respond to (or were intolerant
of) NSAIDs, or who had failed to respond to intra-articular (within a joint)
cortisone injections. Patients were treated with three
intra-articular injections of Synvisc at 1-week intervals. They were followed at
1-, 3-, 6-, 12-, 15-, and 18-month intervals (97 patients
were followed up to 18 months).
Patients were evaluated for pain relief using the Hospital for Special Knee
Surgery Rating Scale and the ability to avoid total knee
replacement surgery. Results indicated that 72.6 percent of patients treated
with Synvisc avoided total knee replacement for the
duration of the study.
There were no serious long-term adverse events reported in the study, although
eight patients experienced acute inflammatory
reactions post injection (the night after the first injection through up to five
days after the third injection). These patients were treated
successfully with NSAIDs, ice, compression, and elevation.
Synvisc(R) is a registered trademark of Biomatrix, Inc., and is marketed by
Wyeth-Ayerst Pharmaceuticals, a division of the
American Home Products Corporation (NYSE: AHP). For more information about
Synvisc(R), please contact Douglas Petkus of
Wyeth-Ayerst Pharmaceuticals at 610-971-4981. SOURCE Wellington Orthopaedics and
Sports Medicine
02/04/99
CONTACT: Mark Bennett, 212-704-8129, or Kelly Lindenboom, 212-704-4425, both of
Edelman Healthcare, for Wellington
Orthopaedics and Sports Medicine
(AHP) CO: Wellington Orthopaedic & Sports Medicine; Wyeth-Ayerst
Pharmaceuticals;
American Home Products Corporation ST: New York IN: HEA MTC SU:
Copyright © 1999, PR Newswire, all rights reserved.
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Phytodolor

2006-08-27 07:20:03

ENZYMATIC THERAPY AND STEIGERWALD OF GERMANY TO LAUNCH STUDY OF AN ARTHRITIS
Story Filed: Friday, February 05, 1999 12:48 PM EST
Pain Product in U.S.
GREEN BAY, Wis., Feb. 5 /PRNewswire/ -- A clinically studied product long used
for arthritis pain in Germany will receive further
research in the United States thanks to an agreement between the American
natural medicines and dietary supplement company,
Enzymatic Therapy and Steigerwald, a German pharmaceutical firm. The product,
called Phytodolor, has been the subject of over 30
clinical studies in Europe. Enzymatic Therapy intends to expand this research in
North America.
"We're working with Steigerwald to further the technology the company applies to
this herbal preparation since it has shown
tremendous success in relieving arthritis pain and inflammation," said Terry
Lemerond, Enzymatic Therapy president. "Their patented
and unique formulation has proven itself in Europe and we'd like to invest in
its research in the United States."
Steigerwald's Phytodolor product is not currently available outside of Europe.
It has been used by Germans as an alternative to
aspirin for arthritis pain relief for over 30 years. The product is supported by
toxicological, pharmacological and clinical
documentation. Clinical studies conducted on patients with osteoarthritis and
rheumatoid arthritis indicate results are realized within
two to four weeks with no stomach upset noted.
Phytodolor is a natural tincture that contains plant extracts of the common ash
(Fraxinus excelsior), aspen (Populus tremula) and
goldenrod (Solidago virgaurea).
An established pharmaceutical company for almost 50 years, Steigerwald is
headquartered in Darmstadt, Germany. Its main
emphasis is in therapeutic products for metabolic disorders, rheumatism,
depressive disorders, gastrointestinal dysfunction and
homeopathy.
Enzymatic Therapy manufactures over 200 natural medicines, nutritional
supplements, vitamins and herbal extracts, and is
headquartered in Green Bay, Wis. The company was the first to introduce Ginkgo
biloba and the standardization of botanicals to the
United States health market. All Enzymatic Therapy formulations are lab-tested
for purity, potency and bioavailability, and the
company distributes its extensively researched product line to health food
stores nationwide.
SOURCE Enzymatic Therapy
2/5/99
CONTACT: Carol Cassell, Public Relations Director of Enzymatic Therapy,
920-469-4419, fax 920-469-8390
Web site: http://www.enzy.com
CO: Enzymatic Therapy; Steigerwald ST: Wisconsin, Germany IN: MTC SU:
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To Ethel....

2006-08-27 06:07:48

Hi,
Being all quite new to this I was not aware that there was a test to determine
whether there was microplasmas in the blood. Carol (LangMaster@...) has
advised me that there is such a test and said that Ethel would know what it
was. Please let me know!
Nancy

word

2006-08-26 18:40:09

The word "lethologica" describes the state of not being able to remember
the word you want.

ARTICLE ON THE IMMUNE SYSTEM

2006-08-26 14:05:02

The Immune System
AUTHOR: C.Cox
<<Your immune system is your personal defense system against attack of all
kinds from viruses, bacteria, toxins and other enemies. Like all armed forces,
the immune system is complex, with an array of weaponry at its disposal. It
includes the lymph system (thymus, spleen, tonsils and lymph nodes), and
specialized white blood cells called T-cells, whichin addition to many other
activitiesproduce interferon, a substance particularly helpful in fighting
viruses. Other white blood cellsB-cellsproduce antibodies in response to
invading bacteria, fungi and parasites. If any of these invaders begin a new
assault, the antibodies "recognize" them before they have time to spread.
Quickly attaching themselves to the invader, they thus "tag" the enemy for
attack by phagocytes, another type of white blood cell. Other members of the
white blood cell battalion are natural killer cells (known as NK), which
destroy cancer cells, virus-infected cells, free radicals and other harmful
substances. In addition, the immune system arsenal contains many other
specialized cells and operations.
The immune system is very sensitive to subtle changes in the balance of
nutrients in the body. Deficiencies of nutrients are reflected quickly as a
weakening of our immune defenses. Although we rarely see severe
malnutritionwith its resulting poor immune systemin the West, we nonetheless
know that a large number of people are not consuming the right kinds and
amounts of nutrients. The result is less than optimal immunity.
FOODS THAT LOWER IMMUNITY
Fats- particularly polyunsaturated oils such as corn and safflower oils-
weaken our immune system in many ways. Diets high in any kind of fat are
associated with a reduction in immune functioning. One study conducted at the
University of Massachusetts showed that reducing fat from 32 to 23% of the
diet boosted natural killer cell activity by 48%!
Alcohol ingestion has been shown to severely depress neutrophils, cells that
"eat" and destroy bacteria and tumor cells.
Sugar and other sweets have been shown to reduce the ability of certain white
blood cells to destroy bacteria. When 100 grams are eatenAmericans typically
consume more than 150 grams a dayneutrophil activity can be reduced by 50%. In
one experiment, this effect lasted as long as five hours after the sweets were
consumed. Fruit sugar and honey, unfortunately, had just as negative effects
as white sugar, while starchy foods had no effect at all.
FOODS THAT BOOST IMMUNITY
Vegetarian diet. A German study, reported in Nutrition and Cancer, found that
the white blood cells of vegetarians were twice as effective against tumor
cells as those of meat eaters. The precise reason is unknown, but may have
something to do with higher levels of phytochemical-rich vegetables and fruits
as well as lower levels of fats in the diet.
Vitamin C-rich foods. While this vitamin's reputation as an immune-enhancer
has fluctuated over time, we do know that vitamin C boosts antibodies as well
as white blood cell activity. Stress of any kindpsychological or
physicalincreases our need for this vitamin. When you think vitamin C, think
more than orange juice. You may be surprised to learn that broccoli contains
three times as much vitamin C as does citrus. And even potatoes are packed
with this helpful nutrient.
Part II
More immune boosting dietary practices
Zinc. This mineral positively affects many immune mechanismsfrom the thymus to
antibodies to T-cells. An Italian study found that small amounts of zinc
quickly raised blood levels of T-cells in elderly people to those usually seen
in much younger people. Since borderline zinc deficiencies are quite common,
it's important to eat plenty of legumes such as black-eyed peas and pinto
beans, and adequate amounts of whole grain breadsthe yeast helps make the zinc
available. Pumpkin and squash seeds are particularly rich in zinc, and make a
delicious snack.
Carotenoids. Although beta carotene is best known in the huge carotenoid
family, there is evidence that many members of this antioxidant group are
helpful to our immune systems. Studies indicate that a high intake of
carotenoid-rich foods (orange-colored vegetables and fruits, in particular)
increase T-cells, natural killer cells, and antibody response. Pumpkins and
winter squashes, as well as carrots, peaches, and cantaloupe, are especially
good sources, though many green vegetables are also rich in carotenoids.
Garlic. Several studies indicate that the "fragrant bulb" does as much for our
immune systems as it does for our taste buds. It appears to increase not only
the numbers of natural killer cells but also their potency. T-cells, as well,
are stimulated by garlic intake.
Chinese mushrooms. Shiitake mushrooms appear to be powerful immune stimulants.
They contain an antiviral substance that boosts T-cells and macrophages, large
cells that engulf and destroy foreign particles. This beefy mushroom is
becoming more readily available in many supermarkets as demand for it
increases.
HERBS AND IMMUNITY
There are times when we're battling a sore throat or other infectionwhen our
immune systems can use an extra boost. Several herbs have extensive folk
histories that indicate they can help us fight a variety of diseases. And, in
the last few decades, laboratory studies have shown that indeed many of these
herbs contain substances that do work specifically to boost the immune system
in various ways.
Echinacea (purple coneflower) is perhaps the best known of the Western
immune-stimulating herbs. This attractive perennial grows in many cultivated
gardens, but was originally a wildflower commonly found in the Midwest. Native
Americans used echinacea for anything from blood purification to snake bite.
Laboratory studies show echinacea to enhance the immune system through several
mechanisms, most notably through activating T-cells and increasing
virus-fighting interferon. It's particularly helpful with yeast and ear
infections, and the common cold.
Ginger. This pungent root stimulates the production of interferon, besides
aiding with nausea and being just plain delicious. Grate some into vegetables,
or treat yourself to small pieces of the candied root.

needing help

2006-08-26 09:49:36

i have been on antibiotics for 10 months. the first 9 months i was taking
doxycycline, and was able to drop methotrexate, sulfasalazine, plaquinel,
daypro from my daily diet. i also reduced my prednisone to 3 mg/day, which
is where i am at today. i also have been taking ra spes for about 5 months.
a month ago, feeling that i had leveled off, i switched to minocycline. the
past month has possible been the worst of my life. all joints
swelled....the pain is becoming too much. i expected a herx when i
switched...but did not expect it to last this long or be this tough. i take
some aleve to help me get through it, but do not want to increase pred or
start any other drugs. im needing some advice from some of you that have
been through this please. should i go back to doxy.....should i do half
doxy, and mino? i cant function like this anymore. help please.
thank you,
dave...ra-9 yrs, ap-10 mos

Ethel or Dr. Chiu

2006-08-26 06:53:56

Am in the middle of a flare in the shoulder down the arm and swollen hand
and fingers at the moment and a little grogghy from panadeine forte.
Just had new x rays done and heres the results:
Both hands and wrists: minor degenerative changes unaltered since the last
study. No erosive feature present.
Both feet and ankles: minor degenerative changes and calcaneal spurring.
No erosive disease of significant joint space reduction.
Both knees: Mild degenerative changes with some medial joint spurring. No
significant changes since the previous study. The patello femoral and
lateral compartments are unremarkable. No erosive change identified.
Conclusion. Only mild degenerative changes identified. No erosive disease
or destruction of joint cartilage seen.
My conclusion is that minocycline has held RA at bay as there is no sign of
it attacking the bone or joint carilege.
I don't understand, though, how the pain can be so severe when the disease
is only described as mild or minor. If I didn't have all this running
parallel and RF was normal and the pain was manageable, I stilll think I
might onlyh have OA. Maybe, that's what I have. How can the pain be so
severe to screaming point (in my case, crying point) when everything else
seems so mild?????????????? And why does it travel? For two days now I've
had it in the right shoulder, unable to write or move the arm out sideways.
But next thing, it'll probably come in the left shoulder or in the knees
or the ankles. Does it happen this way in OA. Do you get the icy cold in
the joints which then turns to the burning in OA?
Sory this is so long, but i'm feeling very weepy and groggy at the moment.
Just can't understand why all the pain, mind i'm very happy with the xray.
The pain was almost uncontrollable - took 2 panadeine forte, 1000mg
naprosyn, 20mg prednisilone, and now, it's just begining to calm down.
Love and hugs,
Jude.
please forgive the typso, i'm rh and typing with teh lf.

more on Canada thistle eradicaation procedure

2006-08-26 03:33:26

There is more

Dr's in E WA

2006-08-25 23:00:14

Hi
Thanks Ethel for letting me know how to post. I was diagnosed with RA
mid Nov 98. The GP who diagnosed me started me on mtx shots every two
weeks by the second shot I had found and read the Arthritis Breakthrough
the Dr gave me a prescription for 500mg tetracycline--a little large. I
took it it MWF until I got the physicians protocol then I switched to
100 mg minocin twice aday MWF then went down to once aday to ease the H
effect. Now I'm back to twice aday MWF and 900mg Cleocin Tuesday. My
GP didn't read the protocol and isn't interested in the antibiotic
treatment, but figures it won't hurt me. This means I'm doing it by
reading the book and all of the Interrupted Journeys and checking
treatments. I just started the Cleocin this week. I hope to find a Dr
who is familiar with the protocol in eastern WA, I live 60 miles north
of Spokane if anyone knows of a Dr in my area please let me know I'm
still trying to get the list from rheumatic.org. I'd also appreciate
suggestions on the protocol since I'm just winging it.
Thanks, Julie

New happenings

2006-08-25 09:28:45

I continue to have stomach and knee problems. Stomach pain located on left
side between ribs and waist. Nothing relieves either pain. then yesterday,
really bad diarrhea that lasted 10 hours. Today I am worn out and weak. My
doc said to stop the Doxy and take Citracil twice a day to see if that will
help. I had been taking Mino but my insurance wouldn't cover so I changed
to Doxy and also went to the MWF method instead of everyday. What do you
think, any suggestions or comments? For those of you that I have promised
info on the magnets, I haven't forgotten you, it's just that I have been so
sick and have had so many puter problems. I promise to get to you as soon
as I can.
Hugs to all,
Jani

Check out InteliHealth - Home to Johns Hopkins Health Information: Arthritis

2006-08-25 05:51:04

<A HREF="http://www.intelihealth.com/cgi-bin/nph-redir.cgi"
InteliHealth - Home to Johns Hopkins Health Information: Arthritis</A
http://www.intelihealth.com/cgi-bin/nph-redir.cgi

(no subject)

2006-08-24 23:17:25

Has anyone been diagnosed with stomach ulcers? Where did your pain occur?
I understand it is most often between the breastbone and the navel. Mine is
mostly on the left side beneath the rib. I am wondering if it may be something
else in addition to the ulcers which the doctor saw. What treatments did you
use?
Thanks for writing.
Pat K.

new ways to treat aids

2006-08-24 23:00:12

On Nova the other night they had program about the new protocol used for aids.
It reminded me somewhat of ours. They have found that when people first get the
virus they do indeed become very sick for a spell, opposite of what they used to
think. They get what they think is very bad flu and then it goes away. They are
now trying, with quite a bit of success, to hit the virus with all the strong
aids drugs the as soon as exposed to it, to help knock it down and help the
immune system to fight it. They also have discovered a genetic defect in some
few people who makes them incapable of catching it and also some other diseases.
This defect has no bad sides to it and actually isnt a "defect" in that those
who have it are healthier than the normal population.
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

VANCOUVER - CANADA

2006-08-24 16:06:00

Hi,
Could anyone out there help me with a great doctor familiar with the AP, or at
least willing to prescribe.:-))
I know of the ones on our list but had hoped that I might get a personal
reference to someone.
Thanks in advance
hugs,
lisbeth

BIG OOPS

2006-08-24 06:56:48

Liz,
Don't feel bad. I recently had an appointment with a new dr. whom I had
never seen before. When I returned from the appointment a friend asked
me what I thought of him. I replied, "He gave me a good feel."
Needless to say once the words were out of my mouth my face turned all
shades of red as I tried, to no avail, to explain what I really meant.
She won't ever let me forget that one.
The way I see it is people who make such bloopers are so intelligent
that their mouths have a hard time keeping up with their minds. That's
my story and I'm sticking to it!!:)
Theresa

Check out The Hampster Dance

2006-08-23 18:25:20

<A HREF="http://www.hamsterdance.com/"
http://www.hamsterdance.com/
Be sure your sound is on.

Prayer request for POP Group

2006-08-23 17:21:22

If anyone has a need for prayer, please send it to Ethel snooks@...
Ethel has garciously agreed to take care of this while I am on vacation and
unsubscribed. I plan to be back on March 1. Will miss you all.
So saying bye-bye for now. SMACK - That's your goodbye kiss!!!!!
Love, Judy

not AP related, just chatting

2006-08-23 16:34:00

I missed both of you girls this visit. Oh....I toyed with the thought but
I was up to my butt in birthday preparations. It's like having a Papal
visit around here when Daddie's birthday arrives.
My boys have to have no less than 3 colors of balloons..and that was after
we narrowed it down. That was 45 balloons to blow up. Then streamers. A
cake to make and decorate and believe me you can't imagine the kitchen when
those two boys have icing and candies to stick onto a cake.
My 4 year old had to re-wrap every gift with his homemade wrapping
paper....newsprint with marker all over them. There was scotch tape stuck
everywhere.
Then at the last minute I get a call and the out-laws are coming for dinner
with our little 3 year old cousin and off I go to get the components for
pizza. I know....ever heard of ordering in?? Of course the place is a
mess so a quick clean up is in order.
My rear-end didn't see the backside of a chair from 9am to 8pm.
Whew.....all done.
Donna
Ottawa, Canada
Scleroderma, Raynaud's 4 yrs, AP 15 months
(My Story) www.compmore.net/~donray

Fibromyalgia

2006-08-23 00:08:11

Nancy asked if the AP was effective for fibromyalgia. Having just
responded to a similar inquiry from someone not on the list, I am
posting that response here.
"If your fibromyalgia is found to have an infectious cause, then
certainly the antibiotic protocol should be considered. Dr. Garth
Nicolson of the Institute for Molecular Medicine - http://www.immed.org
- has discovered a good 60% of fibromyalgia patients test positive for
mycoplasma. He prescribes doxycyline. I will forward an article from
him separately.
Fibromyalgia patients have been found to have mineral deficiency so you
might check this out as well.
On our web site under Interesting Topics, you will find Lee's story how
she conquered fibromyalgia. Lee was spending most of her time in bed
when I first met her. She changed her diet (see the nutritional
recommendations on our web site), took pycnogenol from Kaire
International in Longmont, CO - 1 mg. for every pound of body weight in
divided doses, took Fibroplex by Metagenics to increase malic acid and
magnesium, and took a daily multi-vitamin/mineral plus melatonin at
night for sleep. Exercise was added as her energy level increased.
I also heard of a fibromyalgia patient using just pycnogenol
successfully - again the product was from Kaire International of
Longmont, Colorado."
Group, I'm not pushing Kaire, but I do know they have a superior
product. Dr. Passwater, who has written a book on pycnogenol,
recommends it exclusively.
Ethel

Essiac Herbs

2006-08-22 17:38:53

Hi Friends..
I saw that Ethel posted some wonderful information about Essiac Tea formula.
I have had several friends and family members on this tea at many different
times, usually for cancer treatment. I highly recommend it for any of you who
know of someone with cancer, and it cant hurt the rest of us either. I wanted
to share with you the name, address and phone number of the supplier that I
use here in Southern California. They package and mail the herbs as well as
the bottles and caps, and it is very inexpensive. A years supply runs around
$75. Here's the scoop:
Herb Products Co.
11012 Magnolia Blvd.,
PO Box 898
North Hollywood, CA 91603-0898
Phones: (213) 877-3104, or (818) 984-3141.
I have already sent the recipe and instructions to those of you who have
requested it from me at various times, so the rest of you who are interested
can now go directly to Herb Products, should you choose to, and they will send
you all of the information.
Hope this helps.
XOXOO
Colleen

(no subject)

2006-08-22 17:02:16

I am forwarding this to the list because Berlyne is having trouble sending
to the list.
Denisej
One tequila, two tequila, three tequila, floor.

Questions, questions...

2006-08-22 16:05:14

Hi everyone, it's so good to have the group back.
I have a few questions, that have probably been answered already, but anyway
here they are:
1.. How do I know what dosage of Minocin to take?
2.. How long does the Herx effect lasts?
Like I've said in my previous messages, I feel so much worse. I can't sleep at
night since I've started Minocin. I even added two aspirins at bedtime to ease
the pain. I feel like i'm back where I was before I started Methotrexate two
years ago. I had pain in my neck, shoulders, I couldn't bend my knees. After
starting Metho I felt better but now I feel like I have to start all over again.
Like some of you told me, it's probably a Herx, that I should hang in there
because it is working... I have to see my Rheumy in two months... she'll
probably want to stop AP and right now I wonder if it wouldn't be a good idea...
Answers to my questions would greatly be appreciated.
Mona

My day in Ottawa

2006-08-22 05:22:16

Hello Donna and friends,
Well, today was a big day in Ottawa , as usual. I did of course find more
allergies (so what else is new) and yes, they did go straight for the lungs.
I did get a quick reversal and some oxygen to help me out. I took a break
and then continued on (yes, I'm nuts).
Bonita walked in at 1:00 pm and she was all smiles. She has loooooonng hair,
down to the knees almost. We had some time to gab together, it was real nice
meeting her.
At the end of my day, I had an IV to try and get my body straightened out
from all of this. The worst part was the trip home, the last injection
seemed to have a delayed effect and since I took only half the IV dose, I
ended up with a reaction in the car on the way home. Thank God I always
carry my stuff around, so the benedryl came out and the tri salts and
ventolin. I had lots of tremors, my sister-in-law was obviously getting
nervous from everything. I tried to stay calm as possible to not make her
panick, but inside I just wanted to get home as quick as possible. I didn't
feel like landing in a hospital in Ontario.I still have some tremors while I
am typing here and my skin hasn't gone back to normal, so hopefully it will
in the next couple of hours.
So, a valuable lesson came from this, I won't go home next time so quick, I
will let a minimum of an hour pass before leaving.
That is my fun day, take care everyone, lots of hugs,
Kathryn

Fibromyalgia

2006-08-22 02:06:20

Hi,
I have a friend with Fibromyalgia. Is the Antibiotic Protocal successful with
this condition? She is interested but I have not heard it mentioned.
Nancy

BIG OOOOOPS !!!!

2006-08-21 16:04:07

.........."If it was me I'd see who I feel ...."
Did I *really* write this........I meant of course 'HOW' I feel <naughty grin
Just thought I'd mention it before that man who shall remain nameless (travel
business entrepreneur) has a field day with it!! :-)))
hugs,
lisbeth

EMG

2006-08-21 08:43:06

Well, I had my EMG done today.I do have carpal tunnel in my right hand.So now
I have an annoying brace to wear to bed and while on the computer.I aint
giving up my keyboard for nothing..lol
Joanie

JB [heumatic] A little tea &amp; sympathy please

2006-08-21 05:58:02

Hi JB,
We only have the one doctor listed for Louisiana. Sorry, but my geography of
the US is terrible so I don't know if she is close to where you will be, but I
guess travelling some distance would be worth it anyway ?! Oral and IV what more
could you ask ??!! <grin
Rita Rey Fontenant, (oral and IV)
3729 Ryan St.,
Lake Charles, LA 70605.
318-474-2233.
Are you taking any anti-inflammatory supplements, I was able to stop taking my
NSAID's after doing so.
Oh dear, that's the sort of stuff which does nothing to cheer one up when one is
in pain <caring hug
have never cried over my RA. I am not happy with myself for doing that.
JB, it's good that you can cry ...........truly <smile
you' either and your tears are a wonderful release for all your emotions that
have been building up all this time and will be very healing. Definitely not
something to chastise yourself over, you jolly well have the right to have the
'weepies' every now and then, this is no party <caring hug
I feel there is a difference between 'letting it all go' and feeling self pity,
at least that's my story and I'm sticking to it !! <grin
amount of times I've cried somehow <smile
I've often thought that 'we' are an especially stoic group of people and it's
just because we have that sort of personality but it's more likely the other way
round. We have been forced to be so because of our circumstances and as we
should be looking for the positive in everything this is it! Character building
and all that <wry smile
A short sharp does is fine it's the long term stuff that you want to avoid. I
would query the 30 days on 5 but I'm no expert. If it was me I'd see who I feel
on the 5 and drop it if I felt I was stable. You can also do alternate days, 5
one day one the next 5 next day etc.
Slow tapering is the key, 5mg is not a lot just what the body produces normally
anyway, so don't be too concerned, one has to be able to cope on a day to day
basis <caring hug
That's OK just as long as there's no sugar in the tea and no cookies!!! <grin
You have checked the diet out haven't you ??!!
Glad you've got some relief from the pain, hope to hear you've had the weepies
again soon <grin
hugs,
lisbeth

ARTICLE ON PROTEOLYTIC ENZYMES FOR PAIN, INFLAMATION AND TO ENHANCE ANTIBIOTICS

2006-08-20 21:46:08

German Enzyme Research Yields Joint Pain Breakthrough
by Lane Lenard, Ph.D.
---------
<<Anyone who has played ice hockey or even just watched a game knows how rough
it can be. Flying across the ice at breakneck speeds, players routinely
flatten each other against the boards. They may be pummeled by a swinging
hockey stick or stung by a rock-hard puck sailing through the air at speeds in
excess of 100 miles per hour, not to mention bloodied by their opponent's
ungloved fists.
If you come out of a hockey game without at least a few bruises, you probably
spent it sitting on the bench. Bruises, contusions, torn muscles, and ruptured
ligaments are pretty much the norm for serious hockey players. The swelling,
pain, and immobility that follow such traumatic injuries not only leave the
individual player feeling uncomfortable, they can diminish his performance or
keep him out of action altogether.
So it was in an attempt to shorten the recovery time from common injuries that
the German National Hockey Team began experimenting in the early 1990s with a
substance known as Wobenzym. In addition to their usual treatments, the
players took Wobenzym capsules either immediately after an injury or
prophylactically before games. Each of 100 injuries the athletes suffered was
well-documented, and the healing process carefully and systematically
monitored with regard to several criteria. The first use of Wobenzym in
athletics was by the German Olympic team competing in Los Angeles. The coaches
and athletes found that those who were hampered by painful bruises and
swelling seemed to get back into action faster if they were taking Wobenzym.
The apparent ability of Wobenzym to reduce bruising, swelling, and pain while
improving mobility and healing was also suggested by two studies on hockey
players and skiers. Those who used the product preventatively were able to
return to their sport significantly faster after an injury than those who used
conventional and potentially dangerous nonsteroidal anti-inflammatory drugs
(NSAIDs) like aspirin or ibuprofen.
Both the physicians and the players of the German National Hockey Team were
pleased with their results. Bruises and hematomas shrank in size faster,
swelling was less severe and resolved faster, spontaneous pain, pain on
mobility, and pain on pressure were all lower than expected, and full mobility
returned quicker. Moreover, they found that taking Wobenzym prophylactically
worked better than taking it right after an injury.
Proteolytic Enzyme Combinations
It is actually not a single substance but rather a unique, synergistic
combination of various proteolytic (protein-destroying) enzymes, or proteases.
It was developed during the 1950s by Professor Max Wolf, a Vienna-born
scientist, and his American collaborator, Dr. Helen Benitez. (The name
"Wobenzym" is simply a combination of their names and the word enzyme.) The
precise formulation has evolved over the years, but its basic ingredients
remain the same. The ingredients include the enzymes, bromelain and papain,
which are derived from plant sources; pancreatin, trypsin, and chymotrypsin,
which are extracted from animal sources; and the flavonoid rutin, which also
comes from a plant.
Although systemic enzymatic combinations, such as those developed by Wolf and
Benitez are of fairly recent origin, their healing roots reach far back into
antiquity. The leaves and fruit of the papaya tree (the source of papain) and
the fruit of the pineapple (the source of bromelain), for example, were used
therapeutically by the ancient peoples of Central and South America. The use
of an enzyme (ficin, derived from the fig) to treat a form of cancer is
described in the Bible (Second Book of Kings, Chapter 20, Verse 7). In Europe
during the Middle Ages, early forms of enzyme therapy were used topically to
heal such conditions as decubitus ulcers and warts. Beginning in the 1900s,
proteolytic enzyme extracts of pancreas (pancreatin) were used systemically
with some success for treating certain cancers.
The Modern Age of Enzymes---------
The modern age of proteolytic enzyme therapy began with the work of Max Wolf,
who is also credited with writing the first textbook on the young science of
endocrinology. The work of Wolf and Benitez with various enzyme combinations,
from the 1930s until the 1970s, was largely empiric in nature and lacked the
rigorous controls common to modern-day research. Nevertheless, they observed
positive effects of enzyme therapy in people with vascular diseases,
lymphedema, certain viral infections, and in the healing of injuries and
inflammations. This convinced them that a deficiency of proteolytic enzymes
was a primary factor in premature aging.
In his 1970 book Enzymtherapie, Dr. Wolf proposed that a disturbance of
important physiologic regulatory and feedback mechanisms lay at the heart of
most geriatric diseases-including the loss of immune function-and that the
essential equilibrium within these systems depended on the actions of various
proteolytic enzymes. When certain specific protease enzymes, derived from both
vegetable and animal sources, are administered systemically by oral, rectal or
by intravenous injection, in the proper proportions, Wolf, Benitez, and their
colleagues found they could produce extraordinary healing related to:
Reduced swelling and inflammation
Enhanced immune function

FW: Romantic Love Story

2006-08-20 14:05:00

This is more than a love story -- it tells about true character, which all
of you have in abundance for the generous way you help each other.
Paula
WARNING: CYNICS AND HATERS OF ST. VALENTINE - STEER CLEAR. EXCEEDINGLY
ROMANTIC MESSAGE AHEAD.
John Blanchard stood up from the bench, straightened his Army uniform,
and
studied the crowd of people making their way through Grand Central
Station.
He looked for the girl whose heart he knew, but whose face he didn't,
the
girl with the rose.
His interest in her had begun thirteen months before in a Florida
library.
Taking a book off the shelf he found himself intrigued, not with the
words
of the book, but with the notes penciled in the margin. The soft
handwriting
reflected a thoughtful soul and insightful mind. In the front of the
book,
he discovered the previous owner's name, Miss Hollis Maynell. With time
and
effort he located her address. She now lived in New York City.
He wrote her a letter introducing himself and inviting her to
correspond.
The next day he was shipped overseas for service in World War II.
During the next year and one month the two grew to know each other
through
the mail. Each letter was a seed falling on a fertile heart. A romance
was
budding. Blanchard requested a photograph, but she refused. She felt
that
if he really cared, it wouldn't matter what she looked like.
When the day finally came for him to return from Europe, they scheduled
their first meeting - 7:00 PM at the Grand Central Station in New York.
"You'll recognize me," she wrote, "by the red rose I'll be wearing on
my
lapel."
So at 7:00 he was in the station looking for a girl whose heart he
loved,
but whose face he'd never seen.
I'll let Mr. Blanchard tell you what happened: A young woman was coming
toward me, her figure long and slim. Her blonde hair lay back in curls
from
her delicate ears; her eyes were blue as flowers. Her lips and chin had
a
gentle firmness, and in her pale green suit she was like springtime
come
alive.
I started toward her, entirely forgetting to notice that she was not
wearing a rose. As I moved, a small, provocative smile curved her lips.
"Going my way, sailor?" she murmured.
Almost uncontrollably I made one step closer to her, and then I saw
Hollis
Maynell. She was standing almost directly behind the girl. A woman well
past
40, she had graying hair tucked under a worn hat.. She was more than
plump,
her thick-ankled feet thrust into low-heeled shoes.
The girl in the green suit was walking quickly away. I felt as though I
was
split in two, so keen was my desire to follow her, and yet so deep was
my
longing for the woman whose spirit had truly companioned me and upheld
my
own. And there she stood. Her pale, plump face was gentle and sensible,
her
gray eyes had a warm and kindly twinkle. I did not hesitate. My fingers
gripped the small worn blue leather copy of the book that was to
identify
me to her.
This would not be love, but it would be something precious, something
perhaps even better than love, a friendship for which I had been and
must
ever be grateful.
I squared my shoulders and saluted and held out the book to the woman,
even
though while I spoke I felt choked by the bitterness of my
disappointment.
"I'm Lieutenant John Blanchard, and you must be Miss Maynell. I am so
glad
you could meet me; may I take you to dinner?"
The woman's face broadened into a tolerant smile. "I don't know what
this
is about, son," she answered, "but the young lady in the green suit who
just went by, she begged me to wear this rose on my coat. And she said
if
you were to ask me out to dinner, I should go and tell you that she is
waiting for you in the big restaurant across the street. She said it
was
some kind of test!"
It's not difficult to understand and admire Miss Maynell's wisdom.
The true nature of a heart is seen in its response to the unattractive.
"Tell me whom you love," Houssaye wrote, "And I will tell you who you
are."

When to switch???

2006-08-20 12:38:59

I just asked this question to Dr. Sinnott last month. I've been on minocycline
for 26 months now. His answer was "if you are still getting good results
...feeling good...no problems...ect...stay the course...no need to switch.
When/IF the meds become ineffective...then switch. (if it ain't broke...don't
fix it). hope this helps.
Cindi/Iowa RA 42 yrs AP 26 months
<<
Good question! How long do you stay on Minocin before you switch and how do
you know when the time'e up?

Check out Healthy Ideas -- Ask Dr. On Call

2006-08-20 10:22:14

<A HREF="http://healthyideas.com/healing/doctor/askdoctor.html"
Healthy Ideas -- Ask Dr. On Call</A
http://healthyideas.com/healing/doctor/askdoctor.html
If b you need a dorcotors opinion you can get it here.

Ethel? Dr. Chiu?

2006-08-20 01:27:30

good time to switch anyway. I guess Dr. Brown liked to keep the body on
it's toes and would switch the tetracycline every couple of years.
How important is it to switch antibiotics? How do you know when and if it is a
good time?
Linda

Prednisone Dosage

2006-08-19 21:25:00

Hi Group,
My husband came home and took me to the clinic. I got a shot of Toradol in the
hip. That was pretty painful. I also got a prescription of prednison. I have
to take 40mg x 3 days and then 5mg daily for 30 days with 1 refill. How does
that sound? I don't want to be on Prednisone for very long. Any comments?
Thanks for the tea & sympathy
JB

Dandruff web site

2006-08-19 14:14:18

The Canadian web site for Nizoral is at
http://www.autobahn.mb.ca/~digimark/vellus/
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'm back!

2006-08-19 01:30:51

Just a quick note to let you all know that I am back. You may or may not be
aware that somehow, through my e-mail, my computer got a virus that totally
destroyed my hard drive. I lost everything and had to get a new hard drive. We
decided to upgrade at the same time since we've been intending to do that for a
while anyway. If any of you sent me a message from January 25 to Feb. 3, I did
not receive it and would appreciate hearing from you again.
It's good to be back and good to see the group is back too.
Linda

A little tea &amp; sympathy please

2006-08-18 20:41:54

Hi Group,
Does anyone have a list of Rheumatologists in Shreveport/Bossier City,
Louisiana? I will be visiting there in a couple of months.
I have declined Methotrexate at this time. I did ask for a short tapered course
of Prednisone (instead of 5mg daily) because my shoulder and elbow are causing
me so much pain. The swelling is bad.
I went to see my GP this am to see if she could find out about it (the
Rheumatologist is 4 hours away). She won't prescribe prednisone for me. She
doesn't want to be responsible for the side effects! She doesn't know much
about RA and I think the drugs even scare her! So she has a call in to my
Rheumy. So in the meantime, I have a lot of pain and nothing to take for it. I
just received my last xray-report from Aug 98 showing progression of RA in both
hands.
Also, I went to see my Dentist. While I was telling him that I was in too much
pain from the RA to have prolonged dental work right now, he was telling me
about a friend who had just had both hips replaced after taking Gold, metho,
etc. I just burst into tears! That is so not me. In all these years of pain,
I have never cried over my RA. I am not happy with myself for doing that. I
guess I just didn't need any reminders of how bad RA is.
So my question is this...what can I ask for to relieve the pain. It is
excruciating. I have had RA since 1993 but only diagnosed in 1997. I have been
through a lot of pain. We are almost in the Year 2000, is there nothing that
they can give? I have requested Celebrex and Enbrel but I use Military medicine
and I doubt if they will get that for me. Any suggestions?
JB
Germany

dandruff shampoo

2006-08-18 20:18:51

I could be wrong about this since I live on the Canadian border so
sometimes don't know which country I'm in (!), but I thought I remembered
hearing that a 1% ketoconazole shampoo was available over the counter in
the US (perhaps a different brand name?). I was able to find this
mentioned on this Nurse's PDR site which I think is US
http://www.nursespdr.com/members/database/ndrhtml/ketoconazole.html
"I asked at the pharmacy last week and they told me it took a prescrip. Do
you know the name of what you are talking about?
janet in tulsa"

Assistance, please

2006-08-18 09:05:43

Hi guys!
A good friend of mine has MS and went to the doctor today. She had her
husband bring her to my office afterwards because she was upset because she
had been told that unless she shows some kind of improvement at the end of
two more months from the new medicine (of course, I can't remember the
name!) that she has been taking for four months - the doctor wants to put
her on Methotrexate!!! I wanted to scream and holler - I didn't know they
gave it for that. So, what I need, from you great people is anything you
have about the use of the AP on MS. I know it is our there, but I can't
find it for some reason. I even thought Sarah had something, but I can't
get on her website!!! I am very frustrated! Thanks ahead of time!
janet in tulsa
p.s. Chris, I even tried to send you a message of thanks for getting me
straightened out on onelist, but it came back!!! Maybe I should just go to
bed...:)

Schlorships

2006-08-18 08:39:01

Hello all :-)
I just wanted to mention to you all in case you had not heard, that there is
a big scholarship give away of 100 million dollars for kids to go to private
school. To qualify you must be a low income family. The student must be
entering K through 8 Th. grade. the lottery for this will close on 3/30 and
the drawing will be held on 4/15 The money is being made available by the
owner of wall mart and his friend. If a child is chosen for this scholarship,
all other children in his family will also be eligible to find our more and to
enter the lottery you must call 1-800-805-KIDS
This is an announcement which was make on the Oprah show at the beginning
of the week Good luck everyone. Love to you, Kelly Pritchard

thanks

2006-08-17 23:46:16

Ethel,
Thanks so much for all of your help and suggestions over the past month.
Your recommendation of cutting the doxi down seems to possibly be a key in
alleviating some of this pain ( at least on the days that I don't take the
meds.)
Colleen, thanks also for the info on the importance on why not to take too
much. Hopefully the four months that I took it everyday hasn't made me to
resistant to it. If so I am sure Dr. Franco will figure it out!
Leslie

Celebrex

2006-08-17 12:37:38

Hi, Leslie. It's funny that you asked if anyone had tried it because I was
going to write the group about it today anyway. When I went to the web site
that someone recommended (Ray?) a couple of weeks ago, I was interested in it
because of the lack of stomach problems. A friend got me some samples. (I
know we shouldn't take prescription drugs without a dr. approval--so slap me.)
I have been taking it for a week at the lower dosage--100mg two or three times
a day--and I am getting great results. I have been developing the joint
soreness that sometimes comes with Scleroderma. In particular, my left elbow
was really really painful. It's gone! I'm going to give it another week and
then stop the Celebrex to see if some healing took place or if it was just a
pain killer. Anyway, so far, only good reactions--my stomach feels fine. So
I'm pretty pleased with it.
Marilynn

dandruff

2006-08-17 12:35:27

I believe that there is now a form of Nizoral shampoo (active ingredient
ketoconazole - a broad spectrum anti-fungal) that is available over the
counter in the US. Check it out at your local pharmacy. It really is the
most reliable remedy going.
Pat

doseage

2006-08-17 07:06:48

Hello all,
Well, I finally understand why it is recommended for MWF or at least
every other day to take the antibioitics. I was prescribed and was taking
the doxi everyday and literally suffering for the past three months. Had
been on it since the last of September. Three weeks ago I went to every
other day and also suffered but this week I have noticed that when I take
my afternoon dose of doxi ( I take it at 3:00 and 11:00) I noticed that
three or hours after I take the first dose I start to get stiffness and
increased pain. BY that night is awful! The next day is a tad better but
by that evening a little better than that. The next day before the 3:00
dose I am starting to feel pretty good. But then three hours after the
first dose..wham..it starts over again.
Today was a great day for the first time in three months. ( I am sure you
remember me whining lately... ) I took two boswellia and two
curcuminoids last night and it was my day furtherest from the last
antibioitic dose. I could've sworn someone had slipped me a prednisone I
felt SO good. I took the doxi at 3:00 and now several hours later, I can
feel the pain tring to creep in.
My internist is giving me some samples of the Celebrex to try. Has
anyone tried it yet? Thanks!
Leslie

From Tyler, TX

2006-08-16 20:44:54

In my mail this morning -
At our Lupus Support Group meeting this week, we had a pharmacist, Steve
Sherwood, who spoke to the group, asked each one of us what medications
we were on, and went on to tell the group that their medications were
just controlling symptoms, not doing anything for the disease, and that
they would pay later -- because of the side effects. Also, he whipped
out, "The New Arthritis Breakthrough" and told them he recommended that
every one of the group read it, and treat their disease according to the
book, plus diet, and supplements -- especially support the liver.
(Needless to say, I was euphoric at the end of the meeting. I had never
heard one of our speakers espouse these views -- ours -- in a public
gathering.)
I know you are busy, but wanted to share my enthusiasm with you. Yes,
Ethel, it is happening! Not as fast as we want it to, but faster than
it
was!

Synvisc

2006-08-16 18:19:11

Hi,
I've got a few questions about Synvisc if anybody can help...
Has anybody used Synvisc? How'd it work? How long does it last? and...
Can you use it for joints other than knees?
Thanks,
j.

famous doc gave minocin

2006-08-16 10:30:34

Thought you would like to hear about this.
I just spoke to a woman with SD who is going to one of the most famous SD docs
in the East Coast of the States (the most conservative place in the universe,
you know).
She persuaded him to give her Minocin, more out of frustration that she had
been tried on all, & I mean all, the big gun & not yet proven drugs.
Now, of course he told her that he does not "believe" it will work, but he
said it would "do no harm." She says she has been improving too.
I am not putting out his name, since I did not ask her, or his permission, and
I do not think he would do this as his first attack on the disease.
Furthermore, my doc, is about 30 miles away from him, and is experienced. A
much better doc to see, if you live around here.

Cartilage Gel ???

2006-08-16 10:22:04

Hi all,
Could someone please remind me what the name of the Gel they use to inject for
cartilage damage is called.
Was it Synvisc?
Any info would be appreciated.........thanks in advance !!
hugs too of course :-))
lisbeth

IV Therapy

2006-08-16 03:25:27

Hi Everyone. I've been gone for awhile with computer
problems and it's really good to be back. Went to Dr.
Franco on Monday and he's starting me on clindymicin as soon
as all the arrangements can be made for me here in Denver.
Maybe next week. Even though I read about all of you doing
the IV's, I'm pretty nervous about it. I'm worried about
what it will be like, and what if I'm allergic to the
clindy, and a hundred other things that go on in my brain.
You've all been so very helpful when I've had other
concerns, maybe some of you can help put my fears to rest by
telling me of your experiences. Also, it there's anything I
should watch out for, I'd like to know that too. I am so
grateful to have all of you to turn to in times like these!
Don't know what I'd do without you!

Julie's update

2006-08-15 20:47:17

We had a good visit with Dr. Armstrong on Tuesday. I think I was not
quite as positive about everything as I usually am. I have so many sick
friends and family members that I'm feeling very discouraged with
everything.
Julie had a live cell analysis and candida stain done. This is a really
interesting test. It showed rouleau which is when the cells stick
together to form columns which, of course, hinders their movement
through the vessels. The treatment is to use digestive aids like
hydrocloric acid. It could be that Julie's food isn't being digested
properly, which could be why she has such an incredibly large appetite.
Her body is craving more nutrients. The test also showed a B12/folic
acid deficiency so we're supplimenting those and it showed a fairly high
level of free radicals so we've added yet more antioxidants
.....elderberry to be exact...on top of the pycnogenol that she already
takes. We're also increasing her acidophilus because she showed a bit
more candida than would be ideal....although it wasn't really high.
Dr. Armstrong wants Julie on a gluten free diet.....that was probably
the worst news of the visit. She's already on a sugar free diet and
eats almost completely organic food. I really don't know how I'll fill
her up if I can't give her these grains. I've been wracking my brain
trying to figure out a way to do it. I guess we can force her to eat
all the good stuff but she goes through so much already, now I have to
take away more of the foods she loves. I really hope we see
improvements soon. I wonder how the stress of it all must affect her
too. We end up arguing over food much of the time and that can't be
good for her either. It's all so hard for a 5 year old to understand
but she's trooper and puts up with more than many adults would. What a
strong little person she is.
Jodi

Update and a Question for the Mothers in the group

2006-08-15 08:23:25

Hello all,
Glad you all are back! I went through probably the roughest period
mentally I've had with this disease yet. As some may remember, I have
been on the AP since September 29, 1998 (not going to forget that date
any time soon!), I had some remarkable progress after the first month
and then seemed to slip a bit, then with christmas and traveling I went
into a HUGE flare and when I started seeing a new Doc (Dr. Kempf) it
looked like I may need more aggressive treatment to get the swelling and
pain under control. At least I got a 3 month reprieve from Dr. Kempf on
MTX, we'd wait and see how I did. In the meantime I had gone to NIH to
participate in the same study that Mark has. When I got the preliminary
report, guess what their recommendation was? Yup, methotrexate!
Arghhhhhhh! I felt like I couldn't get away from that stuff. I started
becoming more depressed. And then the list server went down :(
Around the same time I saw Dr. Kempf for the second time someone
mentioned that Dr. Mercola recommends Boswellia as a natural
anti-inflammatory. Since it was cheap I bought a bottle. Within one week
of starting the Boswellia my swelling was down about 75%! Since then
it's gone down to where I have probably only 10% of the swelling I did
before. Remarkable! Not to mention my level of pain has dropped to
almost none! I almost can't believe it! It's been over three weeks now
and I have not had one flare and the past week has been absolutely
unbelievable! I **KNOW** now that I am getting better. I almost want to
go see Dr. Kempf now (7 weeks early) just to go "HA! Told you so!" Now I
am a little worried that I will get thrown back into RA Hell any day
now, but what can you do? I'll just keep taking the mino and boswellia,
keep eating right, keep praying and hope for the best...
The only real bummer for me now is that in that NIH report they
mentioned my x-ray results. Apparently my hands are simply trashed.
"Severe erosion of the carpal bone" probably explains my hand numbness
(which is also almost gone!) One of the "funny" things I've noticed when
the swelling went away was how I could really feel what was going on in
those severely affected joints. I'm convinced my left knee is fairly
damaged also due to the grinding the I know feel when I walk upstairs
and such (It's still better than being RA swollen and hurting all the
time!), so I am probably a candidate for knee replacement. Do they have
artificial wrist transplants? That concerns me the most, as well as the
possibility of permanent peripheral nerve damage, but all this is way
better than RA so my spirits are up. Way up!
I feel so good I booked a long weekend trip to Europe in 3 weeks. I'm
going to go back to Amsterdam, where this whole nightmare really started
for me. I hope the flight doesn't hurt me too bad, but I think it's
worth the risk. I really need a vacation where I can relax and not be in
pain 24/7. I'll let you all know how it goes.... Wish me luck!
Secondly, I have been working on my writing since the group was taken
away for a little while there (yup, I'm writing about what it's like to
be a RA victim and on the AP) and I think I could use some help from the
ladies, mother's specifically. I was wondering if anyone could compare
and contrast the pain of childbirth with a severe RA flare/Herxheimer?
Can anyone help me with this, as I don't think I'll get the chance to
gestate a child myself?! <g
Thanks in advance!
j.

Methotrexate with Minocin

2006-08-15 04:38:18

I'm considering adding methotrexate to my regimen,too. I don't know if I can
wait much longer for the ap to kick in. Not to discourage anyone, I still think
it's the way to go, but I've been on mino for 11 months (have had ra 1 year) and
continue to have rapid progression. I was in tears yesterday with every move.
I have an appointment with a dr. next week who is open to IV's, clindy, etc. and
will do whatever I can but I feel like something has to give. I finally gave in
today and took my first prednisone, which I've kept on the shelf for a month and
did not want to do, but I am desperate. It felt so wonderful to have a little
relief. I was hoping I could do the pred for a few days just to get things
under control but bone destruction is coming very rapidly and I'm beginning to
wonder if meth might not be the way to go, at least for a little while. ? It's
an gut wrenching decision for me, my only hope is the ap and i am scared to
death of everything else. My dr (i'm getting a new one) just told me I'll be in
a wheelchair w/in 4 years or less. I am only 28 yrs old. I hope I'm not one of
those lucky few for whom the ap doesn't work, i don't know if the other
antibiotics or IV's is what I need, or maybe I'm not good enough about sticking
to the diet. I just know that I'm scared and I'm hurting and I'm getting to
that point where I'm willing to try anything that could help.

anyone read this book???

2006-08-15 02:46:34

Hello,
I was wondering if anyone read this book called Anatony of an Illness by
Norman Cousins.
Kathryn-

Osteoperosis

2006-08-14 12:16:10

BONE INTEGRITY IN OLDER WOMEN LINKED TO IGF-1 LEVELS
==============
- EVIDENCE OF A STRONG HORMONE CONNECTION
As women age, osteoporosis increasingly becomes a major health threat.
The result of ignoring its subtle and gradual physiological damage can
include not only future pain and discomfort, but hospitalization, loss
of independence, and even death.
To tease out some of the possible synergistic hormonal mechanisms
involved in progressive bone loss, researchers from the National
Institute of Health and other organizations studying health and aging
examined the association between bone density and the human growth
factor IGF-1. This large-scale cross-sectional study, the Framingham
Osteoporosis Study, examined over 650 elderly men and women between the
ages of 72 and 94 who participated in the Framingham Heart Study.
The researchers found a significant positive correlation between IGF-1
levels and bone density in women in all five sites analyzed: Ward's
area, femoral neck, radius, trochanter, and lumbar spine. This
relationship remained intact even after adjusting for possible
confounding factors such as protein intake, body mass, estrogen levels,
and smoking. A similar association was not established in men, however,
and researchers speculated that this may be related to differences in
sex hormones.
"IGF-1 has been reported to decline during and after menopause,
suggesting an interrelationship between IGF-concentrations, estrogen
levels, and bone loss in postmenopausal women," they noted. "Although
IGF-1 levels decline with estrogen, maintenance of relatively high
levels of IGF-1 in postmenopause in some women may explain in part their
higher bone mineral density."
IGF-1 has been shown to spur bone growth formation. Levels are affected
by nutrition and health status, including protein intake. More long-term
clinical studies are needed, the researchers suggest, to gauge the
safety and effectiveness of using growth hormone therapy to boost the
body's supply of IGF-1 in women who need to take additional measures to
protect against bone loss.
Source: Langlois JA, Clifford CJ, Visser M, Hannan MT, Harris T, Wilson
PWF, and Kiel DP. Association between insulin-like growth factor I and
bone mineral density in older women and men: the Framingham Heart Study.
J Clin Endocrinol Metab 1998;83(12):4257-4262.

FW:(Dr.'s) Office Prayer?

2006-08-14 09:42:17

This was sent to me as an office prayer but I thought it might also be
appropriate for those fun trips to the doctor's office.
Paula
* Office Prayer

CLOSEOUT COPIES OF THE ARTHRITIS BREAKTHROUGH

2006-08-14 08:16:24

If you desire to buy closeout copies of the
origional version of THE ARTHRITIS BREAKTHROUGH , bookcloseouts.com
is offering them at US$4.49 per copy.
See the URL below for details:

Progress Report

2006-08-13 21:02:34

Hi guys,
Just a note to update you on my progress and to encourage any "newbies"
out there. I was diagnosed with RA in December 97, at the same time I
found out I was pregnant. The RA went into remission during the
pregnancy, but came back in FULL FORCE in October 98. I couldn't get
out of bed for a week -- it felt like every joint in my body was
affected. I had to get family in to take care of my little guy, I also
have two young daughters and was unable to take care of them. I
couldn't pick up my baby, certainly couldn't do any regular household
chores, and wasn't able to sleep properly because of the pain. I was
taking 8 - 10 Tylenol 3's each day along with 6 Relafen.
In December 98 I began the AP. In just 2 months I have noticed a
significant difference! I rarely take a Tylenol and do not take any
Relafen. I have more energy now than I have had in a very long time, I
feel physically stronger now than I have in a long time (I was unable to
open a jar of Heinz Baby Food before, but now I have no problem). My
memory is improving (for a while there I would inevitably leave a burner
turned on the stove at least once every 2 days, I would even forget to
turn off the Internet which is not good when you have limited hours).
Now I notice that my feet, which always caused me the most grief, are
getting better as well! I am so thankful to the Lord! My dad has RA as
well - he almost died due to two years of gold treatments. He is very
crippled today and I thought I would be heading down the same road. I
only wish that more people would know about the AP. SO many people are
affected with rheumatic diseases and are suffering needlessly.
Anyways, just thought I would fill you in. I know I'm not completely
out of the woods yet, but I'm certainly on my way!
Here's a cute joke for you.
Abraham wanted to upgrade his PC to Windows 95, but his son was
skeptical.
"But Father,"said Isaac, you can't run Windows 95 on your old, slow
386. It only has 4 megs of memory. Everyone knows that you need at
least a 486 with a minimum of 16 megs to multitask effectively with
Windows 95.
But Abraham, the man of faith, gazed calmly at his son and replied, "God
will provide the RAM, my son."
Take care friends,
Extra special hello to Connie:)
Theresa

Thyroid

2006-08-13 18:47:57

Hello Everybody,
I have been on .10 mg of Synthroid for many years, and I am tested regularly
to see if my thyroid is functioning properly. Any physician can do a simple
series of blood tests to check the thyroid function. Because an
out-of-whack thyroid can cause serious trouble, if you suspect a problem, I
would definitely find out for sure via medical testing rather than rely on
self-testing.
Bye,
Kari

what a day.....

2006-08-13 16:08:47

Well,
Yesterday was a horrible day with hidden gift. It started out with tears
and ended with a feeling of strength and determination.
Here goes.....go get a cup of green tea and get comfortable for this one.
I went for my normally uneventful visit to the Rheumatologists yesterday.
9:45. We go through the cursory glanceover that she gives me stating I
look great. I feel good, I look good. My Ulcer on my middle finger is a
wrinkled reminder but does not hurt and is not infected, a huge improvement
from last winter. My blood pressure is bang on and all my skin on my body
is pretty normal. Then she hits me with the bloodwork that has come back
(dated Nov.98)
She sees a speckled pattern on the anti DNA and my ANA is up to 1:320.
When I was first ill it was around 1:80 and the DNA test was negative. So
she starts commenting on this possibly being an indication of LUPUS. Then
she launches into the explanation that many patients like myself have mixed
connective tissue diseases...yawta yawta yawta and she wants to send me to
the best lab in town to redo the tests to rule out a "false"
positive...which I guess means a crappy lab tech's results.
Well. You can imagine having gone through hell and back with Scleroderma
that I am a bit off balance by these remarks.
So what do I do? I look at her and blurt out, "it could be a lupus like
reaction to the Minocycline." As soon as I heard it come flying out of my
mouth I knew it wouldn't serve me well. She immediately pounces on that
puppy and says she has seen 3 or 4 people with this reaction and if the
tests come back positive I HAVE TO STOP TAKING THE MINOCIN. I respond by
saying that I will reduce the minocin or switch to doxycycline but I won't
stop taking it. She has watched me improve over the last year and a half
and still she doesn't look for an alternative. She just says, stop taking
it. This upset me the most since I know minocycline rescued me from a
death sentence. To abruptly stop taking it, to me, would be equivalent to
me opening the door and asking Scleroderma to come on in!!!!
Ok, being the type of person I am.....reactive rather than passive....I
start to work myself into a frenzy on two fronts. First I am getting
defensive about the Minocin and next I am annoyed that she doesn't
understand the concept of the antibiotic protocol of getting worse before
getting better. On top of that I feel very alone making these decisions
when it would be so nice to hear her say, "don't worry Donna, you're on the
right track. You're bloodwork will return to normal in time." Ya I know,
fantasyland. Also, having Lupus thrown into the pot is a bit unnerving.
So I go home and call my husband who is always there for me. I burst into
tears trying to explain what happened and that I have to go to the hospital
for blood tests. I ask him to go with me and he starts trying to be
efficient with his time and fit me in during his lunch hour. Well I lose
it some more and he quickly realizes how important this is to me. Don't
get me wrong, he would walk through fire for me but he is not sick and he
is not the one that reads and reads and investigates all of these medical
puddles of information so sometimes he just doesn't understand the
implications of certain things. He dumps his plans and agrees to take me
whenever I have to go.
At this point I am feeling alone and a bit overwhelmed so I bother the
incredibly busy and overworked Ethel. Fueling up on her confidence I
contact my doctor (AP doctor) and discuss what direction we are going and
what I require of her. After a soothing and informative chat from both Dr.
Armstrong and Ethel, this is what I came away with.
First.....having mixed connective tissue disease is no big surprise.
Next.....my blood tests could remain out of whack for years....as Ethel
puts it, her ANA didn't return to normal for over 4 years but she felt
well. (an interesting topic we will discuss later.)
The fact that I have been on Minocycline for over 15 months means it's a
good time to switch anyway. I guess Dr. Brown liked to keep the body on
it's toes and would switch the tetracycline every couple of years.
The important thing is I look and feel well and that is the best indication
that the AP is working.
This doctor had me second guessing myself after all that I have been
through. I am astonished at how I could have allowed even a fragment of
doubt to enter my mind. Coming from being unable to keep down my food or
lift my arms over my head to wash my hair to shoveling off the snow on a
double lane driveway before going to the gym followed by grocery shopping
and ending with a quick clean up of the house and a few loads of laundry
how much more evidence can you ask for?
My lesson in all of this is, it's time to get back to keeping a journal.
Others will go through this and I should be keeping good track of it.
Next...my Rheumy is good at monitoring my body for changes. I should USE
HER and not get defensive. Her meticulous records from labs will be very
useful to others in the years to come.
The switch to doxycycline (Vibramycin) is most likely very well timed.
Finally. I realized I am not alone in this. I may wish I could have
someone "take care of me" so that I don't have to make these decisions or
requests but really, what am I here for?
This new experience will be documented and kept for future reference.
Whew...there.....done. What a day.
Onward and upward.
Donna
Ottawa, Canada
Scleroderma, Raynaud's 4 yrs, AP 15 months
(My Story) www.compmore.net/~donray

footnote on the "what a day"

2006-08-13 05:59:20

That afternoon when I dropped by my doctor office for the new Vibramycin
scrip. I had a wonderful surprise.
Tromping up the stairs ahead of me was this Mother and child (little girl)
with the husband close behind.
Being preoccupied with myself and my husband sitting in the car waiting for
me, I have a passing thought that I knew them but quickly dismissed it.
I walk in and there is Heather a fellow Scleroderma AP person. I'm sort
of out of it and she say's DONNA!!! I look up and Oh my gab gab gab gab
gab. I start giving her my readers condensed version of my day...which is
still to much information but that's me...I talk too much and the woman
behind us with the little girl says....DONNA?? I turn around and who is
it?? It's Jodi, Julie's mom (Jodi is our 4 year old on the AP) and Robert
the Dad.
Well, I had completely forgotten that they we coming down that day. I was
so thrilled to meet them. Then the yack fest starts and I am reminded of
my poor husband when Robert makes a comment about whether that is Ray my
husband in the car moving up everytime someone drives away. I know I have
to get going but I wanted to jam in a lifetime of information in 5 minutes.
I finally have to run off as did Heather.
It was wonderful to finally meet them. Of course I completely forget
myself and my manners so .....JODI, ROBERT.....you have to come over to our
place next time. I have a feeling that Robert is a lot like Ray. As for
that delightful and beautiful little girl of yours. I have a 4 year old
boy here that would be gushing to entertain her. Of course our six year
old would try to be very cool during all of this.
I'll tell you. Next conference. I'll be there with b