SeveraL weeks ago someone asked me for the address of where I got my slant
board that I use to help with archilles tendon. Sorry I forgot as I have
been so busy. Here it is...
McMAHAN SHOES
1809 E. 7th Street
Charlotte, NC 29204-2415
704-376-1406
This is the FIFTH night of not having ANY evening stiffness!!!!!!!!! And I
have cut the pred to 2 mg. at night.
Leslie
Good article linking viruses to disease
AOL: <A HREF="http://www.msnbc.com/news/301574.asp"
play role in breast cancer</A
I wrote yesterday about my SED rate being 2. Last night I saw my
rheumatologist. While he doesn't just go by SED rates, he does think they
are important to indicate the general level of inflammation and he takes
them into account while relying more on his thorough examination of the
joints. He says I've been stable for a while, but for the first time, he
found NO ACTIVE JOINTS!!!! Time will tell how long this will last. After
all, I've had RA for 21 years (diagnosed) with symptoms for another ten
years before that. Anyway, I'm so thankful to be feeling better!
Linda
(AP 21 months)
This is the first time I've turned to this group regarding anything not
arthritis-related. Please, please, those of you in the prayer
group......remember my family this week.
My cousin (31) was charged with First Degree Murder today. He turned himself
in Sunday night admitting that he shot 2 people. Apparently he was hearing
voices. I don't know if drugs were involved or if he has mental illness. We
didn't know he had a gun or that he was in any kind of trouble.
My world is spinning. I'm very close to his parents (my aunt and uncle). He
is handsome, healthy, and had a good job and a good family..........and he
threw it all away. I'm having trouble thinking/dealing.
Thanks,
Lisa
Hi Folks,
Quite a few months ago someone posted an article on AS and other
spondylarthropies that very clearly explained how it manifests itself in
women, which is considerably different than for men. I sent it to quite
a number of people as it was by far the most lucid and complete
explanation of AS that I'd run across. For several of us women, it was
invaluable in figuring out if we had AS or RA.
Since that time, my computer has lost its mail at least once and I've
lost the reference. (apparently I didn't bookmark it, as those are
intact and I still can't find it)
Would somebody PLEASE send me the url or article so that I can get it
printed out for my doctor's appointment tomorrow.
Thanks - Jan K
My daughter has recently been diagnosed with JRA. I'm interested in
anti-biotic therapy. Can anyone put me in touch with a Dr. willing to treat
this with this therapy? I live in Superior, WI.
Immunotherapy and allergic rhinitis (for those of you who suffer). Sounds
promising - not for people with asthma, however.
http://www.nejm.org/content/1999/0341/0007/0522.asp
Mark
<A HREF="http://www.pcworld.com/aug99/al_y2k"
August 1999: Here's How - Answer Line</A
Returned to school yesterday - start of new semester. Work day began at noon and
ended 9pm, including a 50 mile trip. Today I am absolutely drained, barely have
energy enough to get out of bed, and very thankful I am only teaching part-time
and can take today off!
The following describes how I feel to a "T"...............
"Some days you're the dog, some days you're the hydrant."
:) Joey
Could someone please resend the email of where to get inspector gadget
parts?
Thanks
Andrea K
http://www.cnn.com/HEALTH/9908/16/chat.kahn/index.html
Mark
In the middle of May, my SED rate was 24. When I had my blood test at the
end of June, I expected it to be the same or a little lower; it was 51!. I
was quite surprised because I felt well. My SED rate from last week's test
is now 2 !!!!! It has NEVER been that low. Having had RA for 21 years or
more, and until 2 years ago, having had an average SED rate in the 50's, my
reaction has been interesting. I want to be really excited, and deep inside
I am, but my logical side says, "Maybe it was a lab error". I even phoned
the lab to find out how many hours had passed between the time the blood was
drawn and the time of the test because the more time that passes, the less
accurate the test. The blood was drawn just before 5 p.m. and they said the
test was done on the same day. While they couldn't give me a time, it must
have been within a few hours. Then my logical side--not quite willing to
allow me to REALLY enjoy this moment-- started saying, "Well it will be
really interesting to see what the next test is". I think I am going to
enjoy this in spite of my logical self. My doctor does not really go too
much by SED rates in his evaluation, but I can't wait to see what he says
about my "2" when I see him tonight!
Linda
Hi Fran, just wanted to say congratulations on your improvement. It is great.
Also your words are great encouragement to the rest of us. I am 1 year into the
program and have seen some improvement. It just does not come fast enough. At
what point did you feel you were almost back to normal? 1 yr. 2 yrs. or now?
Skip RA 11 years and AP 1 year.
Denny OA 3 years and
AP about 9 mos.
Date: Fri, 13 Aug 1999 22:31:54 -0700
From: Fran Velich <franve@...
I just wanted to tell the group that I started Dr. Brown's protocol via
my family doctor in 1996. I used only oral doxycycline and now
minocycline at the max dose Dr. Brown suggested. It wasn't easy,
especially because no one here in San Antonio was familiar with any of
the protocol and I had to keep reading through the group mail, ask
questions and largely "wing it."
At this time, I have pain but not that much and unless you really know
what your looking at, no one can tell that I've had any problems. It's
hard to believe that I am litteraly "back from the dead." (my last RA
titer was 46, and sed rate very slightly raised at 45)
Thanks to all of you who shaired your experiences. To all who are in
the tick of things, HANG IN THERE, it's worth it.
Fran Velich, San Antonio, Tx.
In case you missed this, I would suggest that if you are planning to visit
Munich for Oktoberfest, that you refrain from dancing on tables. :)
This is let you all know that because my computer crashed and I lost
everything I had (yep - no backups!), that I need your help in creating an
updated prayer list.
So.....if you were on the list with a prayer request - PLEASE - I need to
hear from you that (1) our prayers have been answered and you're doing o.k.
or (2) you need continued prayer.
For the newbies : By way of explanation there is a group within the
rheumatic support group who believe in prayer....we are called POPPIES -
Power of Prayer Partners.
There have been some well documented studies by medical doctors that show
that patients who are prayed for recover quicker and to a greater degree
than patients who have no one praying for them. The studies also bear out
that it doesn't matter whether or not the patient believes in God or even
if they know that they are being prayed for.
Also that the more people who are praying for a patient, the better it
goes.
So this is to welcome you to (1) Join in the POPP group and pray for others
in the group or (2) send a prayer request so that the group will be praying
for you.
So..........if you were on the prayer list, I need to hear from you or if
you have a prayer request or would like to join the group. (This is
written Mon evening.....I need to hear back by Friday morning and that's
when I'll post the new list). Thanks.
And again, thanks to the POPPIES members who have been faithful to remember
others in their prayers.
Judy (deejay@...)
"One of the most exciting clinical studies in the field of
gastroenterology is taking place at Cedars Sinai Medical Center, through
a UCLA research program. What makes this study so important is that
early subject reports indicate a strong correlation between overgrowth
of small intestine bacteria with symptoms of chronic fatigue immune
dysfunction syndrome (CFIDS) and fibromyalgia (FM). Many of the study
subjects have experienced dramatic improvement.
. . . . . . Dr. Pinmentel hypothesesizes that in such chronic illness as
FM abnd CFIDS, there is an overgrowth of the normal bacterial flora from
the large intestine to the small intestine. This may be due to a
dysfunction of motility (movement) of the intestine. Without proper
function, bacterial endotoxins can circulate and attack the immune and
nervous system.
. . . . . Consistent results have shown that those taking Neomycin now
test negative for the overgrowth of bacteria. Many subjects have
reporteed amazing results, such as complete disappearance of
gastrointestinal stymptoms. . . .
Some subjects have even reported that their fibromyalgia tender points
are less painful.
Unfortunately, once the course of antibiotics has been completed, it
does not mean that the patient is permanently free of bacterial
overgrowth problems. . . . . Further investigation is needed to
delineate the problem so as to prevent recurrence of the overgrowth."
<A HREF="http://www.microsoft.com/technet/year2k/pca/pca.htm"
Microsoft TechNet - Microsoft Year 2000 Product Analyzer 2.0</A
This is really good.
Hi,
Was it on this list that someone sent info on a supplement that
helped with hepatitis C? I read something but cannot remember where.
TIA
Denise
NC
A study, "Mortality in RA patients with disease onset in the 1980s"
Ann Rheum Dis (1999) 58:11-14, followed newly diagnosed patients for up to
13 yrs. There was no increase in death due to RA in the first decade of
illness. Findings indicated that "among well-treated (not specified in my
abstract) with RA, there is no greater likelihood of mortality because of
the presence of the disease."
I am not sure about the quality of science in this. It is, however,
about the only hopeful article I have read on this topic.
Pat K.
http://primarycare.medscape.com/quadrant/HospitalMedicine/1998/v34.n05/hm3405.02\
.kush/hm3405.02.kush-01.html
Article on osteoporosis, if the link breaks up because it is long, try typing
it into your browser. Or try searching www.medscape.com for the article
"Osteoporosis: Unmasking the Silent Epidemic"
Some good diagrams and pics relating to osteoporosis:
SEARCHABLE IMAGE DATABASE LAUNCHES!
Need a few clinical images to sharpen your research paper, lecture or
presentation? Check out Medscape's brand new Medical Image Database! A
simple topic search yields dozens of high-quality clinical images,
including easy-to-follow instructions on downloading and inserting them
into other documents. A search for "osteoporosis", for example, produces
these results http://www.medscape.com/sr/osteoporosis. Use the search
engine located at the bottom of your Medscape homepage
<http://www.medscape.com
Here's a link you should all read. Important so that your computer is ready
for Y2K. As you will see, there has been some misinformation distributed on
the Net.
http://www.winmag.com/columns/fred/1999/0809.htm
Mark
Anyone want to chat for a few minutes?
http://members.tripod.com/~Mark_Holmes/RA/ra.html
Mark @ 1:01 P.M. EST
Hi,
I think people with rheumatic diseases might die sooner because of all the
poisonous medicines they are supposed to take.
Ute
RA 3/98 AP 5/98
I have read several article about new super-antibiotics. Some that kill 90%
of all bugs in 2 hours, some that kill a VERY broad spectrum of even
vancomycin resistant bugs.
Has anyone tried these? Would they be of benefit to us? How would we get
them?
Thanks,
Mike
Hi gang
I to had a Hep B shot just a couple of months before My knee had swollen I
and was diagnost with RA. I had only taken 2 shots and was due for my third
shot, never did get it, probably a good a good thing. God only knows what
it might have done. May-be we should take a poll on how many in the group
had hep B shots just before signs and being diagnosed with arthritis.
Bonnie
Hi group,
I've been quiet for a long time mostly because of depression. As an
update and for new people, I had a sublication of the c1&c2 vertrabas
and was told the surgery was not elective-was a dangerous situation-and
had surgery Oct.98. A bone was taken out of my hip and I did great for 4
weeks. Before surgery I was normal weight of 155-I am tall .
Four weeks after neck surgery I had a 4 hour foot surgery and have never
recovered.
I have had RA for 20 years and been on mtx for 16 and had very little
trouble.
The neck surgeon had me to stop the mtx and anti-inflamotories and
finally told me I could take 10mg of pred. daily. Up until then I had
never been on pred.
During the neck surgery I was given cortisone but not during the foot
surgery. Five days after foot surgery I just collapsed. I could not get
out of bed without help and the pain was worse than ever in my life. I
had fever and chills and started losing weight. I lost 22 lbs and have
been trying to regain it ever since. Before that I always had to watch
my weight.
In April this year I had to have the neck surgery redone because the
fusion failed. Eight weeks later the surgeon said there was still
movement and he put me in a halo brace.
I wore it for 8 weeks and last week when it it was removed he said it
did not fuse and I will have to have the surgery repeated.
I'm sorry this is so long but here is my question. Does anyone know
about catabolic state and how to get over it? I have been researching
what prevents bones from fusing and read that besides smoking-I
don't-excess movement, malnutrition and a catabolic state can cause
this. Of course when I talked to my doctors about this they looked at
me like I was crazy. One of them said that is what Aids and cancer
patients have. But I have also read that severe stress-such as surgery
etc. can cause it. I've read to decrease carbs and increase animal
protein and fat, to take l-glutimine and l-carnitine and colostrum.
I have been trying these things-except I haven't bought any colostrum-
for about 10 days and if anything I look worse- legs look like sticks.
Does anyone have any suggestion? I am determined to delay surgery until
I am in better health. These last 9 months have been the worst in my
life. The pain has been unbelievable and the depression overwhelming. I
did start seeing a physcologist last week and that has made me feel
better. Again I hope someone has suggestions and sorry this is so long.
Helen
Dear Yoly,
I can't reproduce what you saw - I gather you had gone from rheumatic.org onto
the support group page? Is it possible that you went off the page somewhere?
There are programs that spawn additional web pages on your machine which contain
adverts for products and sex sites - perhaps it was one of them?
Chris.
Hi gang,
I was just surfing the AP home page and at the top where is says
"View guest book" I click there and there is a link for a porno
site.What is up with that!!!!!. How could this be on the AP web site. It
is called KARA sex something?.
I was surfing to try to find out how to send a photo of myself
to the group photo library. Can someone tell me how to do that.
I'm not a prude , but this is no place for that.
Take care , Yoly ANTIBIOTICS FOR RHEUMATIC
DISEASE SUPPORT GROUP
hi every one iam back, gee sure miss you all, i have beenreading some of you
kind folks mail about RA gee I never knew their were so many I ll pray for
all, i do hope you pray for me, finger are still bending, gee i cant find a
DR to operate on them because they wront work ill suffer more //////////well
its because i have three deases in one, so i need to know if people out there
have my three deases and had fingers done HELP well I sure could use some
real ans, are THERE real DR on this onelist with us , take it slow all
Marie from MAINE
oops..........forgot one step. After you click on "format" click on Rich Text
and that highlights the other stuff..........Joey
Hello Gang,
Here is the web site of the orthopaedic clinic where I will be
getting my BIONIC hips.I'm seeing Dr. Gustke.
Check it out, Hugs Yoly!!
The Florida Orthopaedic Institute
For Leslie, Yoly, and anyone else who doesn't know:
Nothing special on my PC - here's what you do. Go to the tool bar across the top
of the message window. It says File, edit, view, etc. Click on Format, and
another bar appears. Click on any one of the selections to change fonts, letter
size, B=bold, I=italics, U=underline, and the little painters palette=color
choices. Click on it and another bar comes up, just click on the color you want.
Voila`.......what could be easier! It's the artist in me that insists on the
colors!
Have fun..........Joey
Well, I came back recently from my 1 year check up at the NIH (the end of
the research study I was in). I had some interesting discussions with a
number of the doctors there. Since I am doing worse than I was doing 6
months ago (although physically I still have pretty good range of motion,
except for my shoulders), they pushed me hard again to take methotrexate
before I do any signficant damage to my bones.
I found it interesting that the scope of their study changed over time.
They were trying to find some sort of a virus that might explain the cause
of RA, but were unsuccessful in isolating mycoplasmas,etc and eventually
turned the study in the direction of examining patients and trying to
predict who would progress to more serious cases of RA and who would not,
based on the tissue biopsies and blood work they analyzed.
I asked them specifically if they were unable to find mycoplasmas and they
said that was correct. However, in a follow up email with my NIH doc today,
he did send me a note which I attached at the bottom of this email (which
you can disagree with if you so desire)
They did say that I could continue to take my minocin with methotrexate.
They suggested in fact that the NIH was planning to do a study of metho and
mino used together as they felt they exhibited certain synergistic effects.
We talked about herbs - I don't think they are necessarily against them, but
since there is no good concrete scientific data (you have to remember these
are mostly scientists - my rheumie there is a scientist as well as a
rheumatologist), they find it difficult to recommend anything, in fact, they
remain somewhat concerned as to how these herbs affect regular medications
as well as the lack of regulations governing the industry. I can see how
those would be legitimate concerns. They did point out that there is a new
agency at the NIH (the Alternative Medicine and Complementary Medicine
wing), whose web site I mentioned in an earlier post. How well funded they
are and what they will discover is anyone's guess. They are having a big
seminar on the liver and the effects of herbs,etc on the liver . Perhaps we
will find some more things out about milk thistle and whether it really
protects the liver, as I know that has been questioned here.
I must say that it was a tense time for me, as I feel I always have to push
hard for the AP and don't want to be run over, yet at the same time, I feel
these people are legitimately concerned for me (they spent at least 1 1/2 -2
hours discussing this stuff with me and trying to explain their viewpoints)
and want to see me get better. The doc even said that if someone proved
minocycline definitely would knock this disease on it's keester, then by all
means they would be using it. Until then, they would go with what they have
done the most studies on , that being metho for which they have data for the
last 20 years. We did discuss Enbrel and Arava (expense for one thing keeps
me from trying those), but they had more confidence in methotrexate because
they have long term data and with Enbrel and Arava, they don't have that.
So, we shall see what happens and I'll let you know if I decide to head on
down this slippery slope. I have to tell myself they have my best interests
at heart - whether they are right or not, remains to be seen, but I want to
be more active than I am now, so I may be willing to take this risk. As
they told me, you can take it for 3 or 4 months and see how it goes - if you
don't like it, you can quit it - you won't have damage in that time span and
you'll be monitored closely for liver enzyme elevation.
My doc's comments:
"
I did not mean to say that there is absolutely no evidence of detecting
mycoplasma in samples of patients with RA - there are papers reporting
finding mycoplasma occasionally in RA and those using equally good
techniques that do not.
I think the important facts about the connection with mycoplasma are
1) even the most optimistic reports find the organism in less than
half of RA patients, and many do not find any (see abstracts below)
2) even mycoplasma advocates mostly think that the arthritis itself
is from an abnormal immune response to the organism, whether or not it
persists - so effective therapy must end up being anti-inflammatory
3) in proven clinical mycoplasma infections, 2 weeks of antibiotic
therapy eradicates the organism, and even accounting for the difficulty of
drug delivery to the joint, 6 weeks should be the longest duration necessary
in an immunocompetant host - after that amount of time, the risks of
promoting resistant organisms become greater than any antibiotic benefit (as
has been shown in pediatric infections)"
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day MWF;Zithromax 500mg T,Sa; Lodine
400mg 3x/day;Zone Diet;Slippery Elm;Fish Oil(9 caps/day);Milk
Thistle;bromelain;glucosamine;Exercise - 2-3 mile walks-5 days/week
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html
ICQ 18123139
We should all look at Ethel---see's had RA for along time and never took
the DMARDS and she's still with us, full of information and active.
Julie
I just visited a sight which had some information on a link between the Hep
B vac. and outbreaks of RA....I found that interesting since I got two Hep B
Vacs last year and broke out with RA in Jan of this year....anyone else have
a similar experience?
Blessings and Health
Tony
Hi folks,
I'm just beginning to take the Collogenics and Collogenics Intensive Care
again (had slacked off many moons ago). Can anyone who takes these remind me
of any special instructions as far as normal dosage, timing of doses, between
or with meals, interractions with minocin or anything else, etc.??? It gets
so dang confusing when you're taking so many different things. (FYI, I'm
also taking minocin, zithromax, Cal Appetite, Omega EFA, & Ultra Flora Plus.)
Thanks,
Lisa
Ethel - I just read your response to Tony where you made the
following comment:
Remember, the antibiotics kill off the bacteria the MTX
needs to break it down...
I don't understand this. Could you please explain? Thanks
Lea
Hi gang,
I was just surfing the AP home page and at the top where is says
"View guest book" I click there and there is a link for a porno
site.What is up with that!!!!!. How could this be on the AP web site. It
is called KARA sex something?.
I was surfing to try to find out how to send a photo of myself
to the group photo library. Can someone tell me how to do that.
I'm not a prude , but this is no place for that.
Take care , Yoly ANTIBIOTICS FOR RHEUMATIC
DISEASE SUPPORT GROUP
Hi All - the good news is that the biopsies of the lumps in my armpits
showed only reactive cells indicative of inflammation and nothing
malignant. Whew!
Many thanks for the great messages of support. It was great to read them
in the morning before going for the test.
The funny thing is that I tossed and turned the night before with images
of large hypodermics drawing cells from my armpits but in reality the
needles were really really tiny and the experience one of discomfort
only rather than pain.
Thanks Again
Barbara
Tony said.....
...I would rather not take the MTX anyway due to the side effects and
potential for liver damage BUT I may be more successful in getting the RD to try
the minocine if I stay on it.
It really pisses me off that some doctors know they have you over a barrel and
use that fact to force their patients into doing things they are against. Or so
it seems to me.
Joey
"The Journal of the American Medical Association (JAMA) reports that in
1997, four out of 10 Americans underwent some sort of alternative
therapy, from quaffing herbal potions to undergoing spinal
manipulation. More people visited alternative medicine practitioners
than all U.S. primary care physicians, and they spent an estimated $21.1
billion on alternative treatments."
I am going to try and talk my RD into giving Minocin or Doxycycline a try
but am currently on methotrexate (as well as plaquinil, sulfasalazine and
prednisone)...It seems I've read somewhere that the MTX and Minocine will
kind of cancel each other out since MTX weakens the immunine system and
minocine builds it up.
I would rather not take the MTX anyway due to the side effects and
potential for liver damage BUT I may be more successful in getting the RD to
try the minocine if I stay on it. Has anyone tried taking both at the same
time and has it worked?
tks
blessings and health.
Tony
I admit it. I'm a health newsletter junky. I get sucked into those
promotional newsletters every time; the ones where they insinuate that
they have the answer to preventing cancer, heart attacks, and black
rot. I subscribe, usually for two years because that's how you get the
little booklets that specialize in cures for arthritis, osteoporosis,
and blossom end rot. I read them cover to cover when they come in. It
isn't long before I become disenchanted. Worse, I start to get really
confused. This one says take double that, this other says it's toxic.
The latest is calcium. I learned last year that the Harvard School of
Public Health had done a study which revealed that taking extra calcium
does not help prevent osteoporosis. For years people like Robbins had
been saying that women in countries which consume very little in dairy
products had the lowest rates of osteoporosis. Now a few newsletters
seem to be catching up. One now advocates taking magnesium at twice the
rate of calcium (the exact opposite we've been doing). That it is
magnesium which builds strong bones. I wonder how long that advice is
going to last.
I was just wondering, do any of you subscribe to a health newsletter
that you really believe in? One that time has tested and proved to be
of real value to you?
Deb
Thought some of you might like to know that the NIH has now developed a
separate entitity to explore Alternative Medicine. Their web site is
located at http://nccam.nih.gov/
Mark
http://members.tripod.com/~Mark_Holmes
RA 4/98 AP 7/98
Minocycline (Lederle generic) 100mg 2x/day MWF;Zithromax 500mg T,Sa; Lodine
400mg3x/day;Zone Diet;Slippery Elm;Fish Oil(9 caps/day);Milk
Thistle;bromelain;boswellia;glucosamine;Exercise - 2-3 mile walks-5
days/week
RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html
ICQ 18123139
AOL IM ATHiker95
Some herb and pharmacy info:
For yeast, I got yeast defense (recommended for women, but of course guys can
take too). It's made by Nutrition Now and has Caprylic Acid, Pau D'Arco,
Garlic, Grapefruit seed extract, Chlorophyll and Acidophilus and Bulgaris
cultures. I just started it (along with olive leaf) and will let you know
how it works.
ALSO...Willner's Pharmacy is fabulous! They have cheap prices, smart staff,
they compound scripts, and they are huge and one of the oldest around. They
will mail you catalogues and they ship. Here's their 800 #: (At least check
them out: as you can see I'm a big fan) 1-800-633-1106.
Have a nice Sunday.
Susan
"......There is also an increased mortality rate. The five-year survival rate of
patients with more than thirty joints involved is approximately 50%. This is
similar to severe coronary artery disease or stage IV Hodgkin's disease. Thirty
years ago, one researcher concluded that there was an average loss of eighteen
years of life in patients who developed rheumatoid arthritis before the age of
50."
This is from Dr. Mercola's protocol. How should this be interpreted? Have
researchers reached a different conclusion from that of 30 years ago?
Joey
In article <034601bee6d1$c81f4b40$261966ce@user
An assessment in 1991 suggested that the overall figure was 5-10 years
in RA.
-------
Regards, Dr Graham Chiu
Prospective Internet Observational Study in Arthritis
Home Page http://www.compkarori.com/arthritis/
Contribute at http://www.compkarori.com/arthritis/contrib.htm
Data Entry at http://www.compkarori.com/cgi-local/piosa.cgi
Can anyone tell me the differences between Cleocin and Zithromax. I
kind of told my old Dr what to prescribe and since my labs are up I was
considering a change. Right now I'm taking 1200mg Cleocin on Tuesday.
Thanks
Julie
Hello Gang,
I wanted to share the exciting news concerning my up coming
double hip replacement . Ankylosing Spondylitis has totally destroyed
both my hips. I have held on as long as I could for the total hip
replacement (THR) due to my young age ,35 . Well the time has now come.
We found out through a doctor that I consulted with here in my home town
of Jacksonville, Fl. about a trail study going on some where in florida
using a metal on metal prothesis in stead of a metal on plastic . It has
been approved in Europe and in use for ten years now. After searching
the net my husband found the doctor doing the case study here in the
states.His name is Dr. Kenneth Gustke at the Orthopaedic Institute in
Tampa , Florida. We made an appointment to see him six weeks ago. I went
to see him on 8-12-99. While setting in the waiting room I started
chatting with a lady who had these metal on metal hips put in through
the study. She said it was a lottery drawing and the winners got the
"Bionic hips". She was about 80 years old and walking like a champ.I
could not believe she had THR. She said that it was two years ago and
was there just for a follow up. I became sad when she told me that
lottery time was well over.I though to myself I will go into his office
and BEG him for these hips.
In came Dr. Gustke with his team of five doctors and
assistants. I told him about my keen interest in the case study and how
badly wanted the Bionic hips. He said to me well today is your lucky
day.We just got FDA approval yesterday. WOW!!! I could not believe
it!!!. Talk about timing , I was so happy I could scream .These new hips
are made to last 20 - 30 years since there is nothing to wear out, no
plastic. The best part is that since they are FDA approved my insurance
will pay 100 percent!!!!!.
I am scheduled to have the left one done around the middle of
september and the right around the middle of december. I'm very scared
but also very excited about going into the New Millennium pain free and
BIONIC. My last question to him was " Are these hips Y2K ready " LOL
!!!!!! Don't want them going out on me at the stroke of midnight.LOL
Please say a prayer for me and my family, we have a tuff 6
month ahead of us.
Take care, Yoly!!
Hi Gang
Just wondering if anyone has info on what herbs or combination of herbs to
take for RA inflamation? I had stopped taking the celebrex for one day and
I seized up so I started back on it again. I don't know if it's power of
thought or what but the swelling of my ankles and knees have eased up.
Anyway would appreciate the info on herbs,I would like to ween myself off
the celebrex if possible.
Bonnie
Hi, it's me again,
Good news!! During the last six months, we have had three deaths in the
family, my Dad has had two heart attacks, my FIL has had bowel cancer and
operated on and my mum has had shoulder reconstruction, I think the tide
has turned.
This week I learned that one of my very first students has just attained
his Masters Degree with the London College of Music, and today we had Music
exams and all my students received A's (85% or above!) Wow, just can't
take in all this good news at once!! It is a wonderful feeling to know
that in some small way you have contributed or made a difference in this
great world of ours.
Oh, and by the way, I took a bad fall the other day. I was pruning the
roses and doing a little weeding and had two lovely piles - one of soft
weeds and one of prickly rose prunings when it began to rain and I began to
run for shelter. I say began, because although the upper part of my body
moved forward, my legs locked and I went flat on my face - right into the
rose prunings!!!!<LOL
can say I came up smelling like roses !!!<bigger grin
Behind every cloud there's a silver lining..
LOve and hugs,
Jude.
Hi Group,
My last blood tests showed improvement in the RF from 215 down to 150 and
ESR from 26 down to 11. As I reported last time I'm still having the gold
injections. I don't believe that the gold has done anything, but I did
increase the Minocin from 200mg X 3 times weekly to 5 times weekly and the
levels have gone down.
Prior to the gold however, there were a couple of times where I forgot to
take the minocin and found that at those times my bloods went up. I'd like
to experiment by stopping the Minocin, prior to the next blood test, to see
what happens with those results.
My question - How long can I stop the Minocin for?
Love and hugs,
Jude.
Someone from California sent me an article from The International
Journal of Alternative Therapies on Beta 1,3/1,6 Glucan. There was a
note to "E" and signed "J".
I correspond with many people by snail mail, phone and internet and know
a jillion people whose names begin with J, but I have no idea who this
could be.
If the person who sent me this is on this list, please send me the
address of this journal.
Thank you.
Ethel
Dr. Zoltan Rona had a short article in Friday's Toronto Star on the benefits
of probiotics:
"--Manufacture B vitamins (biotin B3, B5, B6, folic acid, B12) and vitamin
K.
--Secrete lactase, an enzyme required to break down lactose in milk.
--Act as anti-cancer factors by inhibiting bacteria that convert nitrates
into nitrites.
--Natural antibiotic against bacteria, viruses and yeast-like Canadida
albicans.
--Help bowel function and reduce bad breath.
--Prevent skin problems, acne and skin infections.
--Reduce the blood levels of cholesterol.
--Produce lactic acid, improving digestion.
--Counteract putritive bacteria like bacteroides, associated with a
meat-rich det.
Also useful for allergies, exzema, colitis, psoriasis, irritable bowel
syndrome, bladder infections, vaginitis, other chronic infections and
autoimmune diseases (e.g rheumatoid arthritis, ankylosing spondilitis)"
Linda
I saw this article below in Dr. Weil's current newsletter. I though some
of you might be interested.
Linda
Dear Friends:
You'll see that in the dog days of August we've just launched a great new
doctor finder called The Health Pages
(http://www.drweil.thehealthpages.com/). At the top of the Ask Dr. Weil
navigation (under the "new" burst), you'll find the link to comprehensive
information about more than 500,000 doctors, managed care plans and other
health care providers in the United States. You can rate your doctors,
search for details about a particular provider, compare details about
multiple providers in your area, and learn more about current health care
issues and common medical problems.
Here are some examples of what you can do:
1-Rate your doctors according to eight simple criteria.
2-Compare specialists in your state and locality on key criteria such as
years in practice, training, plan affiliation, clinical interests and
office services.
3-Review the quality, services and provider networks of thousands of
managed care and Medicare plans.
4-Look up a provider you already know or are considering.
5-Locate the right mammography clinic or hospital maternity ward for your
needs.
6-Share your experience with your doctors with others who are in the
process of choosing a physicians.
7-Learn how to navigate our country's swiftly changing health care system.
8-Care for your family with consumer-friendly articles on more than 60
health care and medical topics.
9-Locate a doctor's office on a map.
10-See what others have said about particular health care providers and how
they have rated them (get more details).
And while you're checking out The Health Pages, you'll also see that the
Ask Dr. Weil Local Practitioners's Database is linked within this new
offering. That's an additional 10,000 holistic practitioners. Let us know
what you think about The Health Pages in the boards
(http://boards.pathfinder.com/cgi-bin/webx?13@^324111@.ee8f713/78).
My doctor wants to give me pregnenolone because I have a low cortisol
level and a low DHEA level. Progesterone was low but has been normal
since doing several years of natural progesterone. Testosterone and
Estrogen are fine. This is an effort to get my adrenals up to normal so
I can then start thyroid hormones -- I got worse taking thyroid because
it calls upon the adrenals for cortisol, which it didn't have.
I was wondering if anyone has experience with this stuff. I'm from the
old school of "if it ain't broke, don't fix it", so I am reluctant to
take anything that could now affect my ok testosterone & estrogen
levels. I'm more inclined to individually supplement cortisol, DHEA,
and progresterone levels. My doc says the body will decide what it
needs and make whatever hormones it needs. Sounds good but...
Anyone have any ideas?
Deb
Hi Everyone, Just a short RANT...
I am on a search for Rheumy's who are practicing in the Vancouver/lower
mainland area of British Columbia who are not stubborn, closed minded and
ignorant!
I am looking specifically for specialists who are interested in the
Antibiotic Protocol. I would love to meet someone who knows more about my
disease than I do.
I'm tired of having to continuously educate my GP!
I'm tired of running into brick walls and being held back because certain
Dr's won't even consider different treatments!
I want someone who will work with me to help me get rid of this friggin
disease. I'm fed-up with being told I can't.
AND I AM NOT ALONE!!!!
ANY LEADS TO AP-FRIENDLY RHEUMATOLOGISTS WILL BE GREATLY APPRECIATED!
Frustrated in Vancouver!
Yesterday I had a call from a very excited Cherra Coates. She joined us
when we first started the list but she has a very seriously ill child
that demands constant medical care and has no time to join the support
group.
Cherra was exploring our web site and came across Dr. Weg's protocol.
She called him and he told her about a doctor in Fort Worth, Texas that
was using all the therapies he was using. She made an appointment, took
her history and lab reports and came away with all the prescriptions she
needed.
Cherra said the doctor is very open to new therapies and will take
patients from our group. His name is
Barry L. Beaty, D.O.
4455 Camp Bowie Blvd.
Suite 211
Ft. Worth, TX 76107
Phone 817-737-6464
Dr. Beaty has invited Dr. Weg to speak at a presentation here for
doctors.
Cherra also mentioned that one of her worse problems were her sinuses -
one infection after another for years. The Minocin has cleared up the
problem. She will be writing that part of her story for us soon.
Ethel
Hello,
I'm Joan, my husband Dave is entering this message. I have just joined your
support group today.
Here is my situation.
I have had diffuse scleroderma for 11 months. In Feb, I was started on
Depen 150 mg every day for the 1st 6 weeks. I have worked up to 500 mg daily
and have been on that dosage for 6 weeks. Now I am seeing signs of skin
relaxing and have my energy back. This week my rheumatologist started me on
Minocin, 50 mg twice a day, every day. Everything I have read says to use
Minocin Mon - Wed - Fri.
I'm looking forward to your comments.
Thanks, Joan Wood
Hello and happy Friday!
I made it through my first tough schedule week and TGIF!!
Has anyone had a CRP number of over 90? This is the one blood test
result that is really worrying me...
Thanks!
Leslie
Hello Everyone,
I was talking with a gentleman yeaterday who has Polymyalgia Rheumatica
(PMR) and was interested in learning more about the AP.
I am faxing him the relavent informantion (since he does not have internet
access).
I checked the Medical history's section of the Rheumatic web page and did
not see anyone who listed this type of RA.
My question to the group is; Does anyone have PMR and if so, has the AP been
helpfull?
Thanks for your help,
Thomas (Reiters Syndrome 5yrs, AP 3 years)
Hi everyone,
I just received a phone call from Judy (Deejay). She is doing very
well.....but her computer decided to leave her stranded :-(
She hopes to have it up and running again real soon. At that time she
will update all POPPIE requests. She also wants to say "hello" to
everyone and she's feeling like she's been off-line for many months,
even though it's only been a few weeks :-)
Connie
Hi Gang,
Janine here! I just thouht I'd let you all know, that 'I DID RIDE A HORSE'
just yesterday!
Yes this is the same Janine that went from Harley(wheelchair) to walker, to
cane and now to a HORSE!
I only stayed on him for 15 minutes, because he tryed to 'trot' on me, and
my right hip is still quite fused, so I couldn't tolerate that just yet.
But I had to let you all know, that I have succeeded in that goal!
The horse was 5 hands high, so he was NOT small, he was 16 years old, so
not too skinny either(giggle). His name was 'Blue'. Maybe if I knew how to
ride side-saddle, it would have been more tolerable. However, I did get my
left foot into the stirrup ALONE (yes I got it up that high!!) and with a
boost from my daughter, was on in seconds!
Now I have to tell all that I feel that FUSED joints seem to eventually
come back to normal, while on minocin. My hip has a ways to go yet, but it
has come a long ways! Now I used to think this was impossible, however, I
spoke to Jan Deswick this a.m. and she mentioned it BEFORE I did! Her
wrists are mobile after years of fusion!!
This lady has had RA 10 years longer than I . So I am very excited, that
this possiblitiy exists! Jan is working with Dr. Mercola, who also knows
of her success! I hope I'm not overstepping my boundries in mentioning
this, but I am very excited about the poosibilities for ALL RA patients!
I would also like to mention my thoughts on Kathryn's recent trials.
Hang in there, God has chosen you to be a very SPECIAL patient in this
life-time. With guardian angels as tough as Donna, RA doesn't stand a
chance!!
I think of all of you all the time and say prayers for all!!
Love,
Janine
Dear group,
I have a rough idea of the request but need someone to reply to this lady in
Spanish. Could someone help by telling her about the therapy for rheumatoid
arthritis and lupus - probably doxycycline as there is a lupus component? Also
if you could ask which state of Australia she is in as I have a list of doctors
who might help?
Thanks, Chris.
From lopezravenau@...
Since I discovered I have a yeast problem I have been searching thru all
my herb articles on how best to deal with it. There was a long article
in the Herb Quarterly summer 96. Among other things it recommended
grapefruit seed extract at 2000mg aday--it comes in 500mg capsules.
This isn't the same as grapeseed extract. Also echinacea, garlic, Pau
d'arco bark as a tea and celandine. They also suggest a tea of 2 parts
sage, 2 parts raspbery leaf, 2 parts mullien and 1/4 part goldenseal
root. Use 4-6 T of herb mix per quart of water bring to a simmer over
low heat. Keep pot covered. Remove from heat immediately and let steep
20 minutes. I'm taking a echinacea pill with goldenseal in it and have
heard you need to becareful with this herb so I left that out. I also
used fresh herbs and guessed on the amount they would be dried. I now
have it in the frig to swill regularly.
Julie
I found this while I was in the Mayo Clinic site. Looks like a study on
probiotics of sorts is under way at the Mayo Clinic. Dahhh...it's about
time.
==========from the article==========
Mayo Clinic researchers are conducting a large clinical trial to determine
if there's a relationship between taking Lactobacillus and a decrease in
antibiotic-associated diarrhea. Results are expected in a year or so.
http://www.mayohealth.org/mayo/9908/htm/diar.htm
Thanks to those who have responded to my "newbie" post. I have several
more questions:
1. Can I search for a specific topic in the archives or do I have to
read through each digest and search on my own for topics?
2. What is the url for the general website?
3. How can I get info on RA SPES?
Thanks. I will try to get more organized and familiar with sites so I
don't have to keep asking questions.
Hope
Here is a nice summary of the lymphatic system and how it works.
http://www.mayohealth.org/mayo/askphys/qa990423.htm
hello everyone,
I am aware that Donna sent a note to the group mentioning my recent
hospitalization and adventure. After an injection of Cipro during testing, I
reacted very badly and went into "status asthmaticus" which is the worst any
asthmatic can be. It is a life or death state, something which I seem to
come by quite a bit. I was given emergency treatment by my doctor, such as
adrenalin by intravenous which was hell for my trigeminal neuralgia and I
was also given benedryl, magnesium for cardiac reasons. After three hours,
my state wasn't improoving enough so I had to be admitted to hospital which
I did eventually land in the ICU.
I felt somewhat like a lab rat since I was in a room alone with two walls of
windows and I had several doctors and nurses watching turn lobster red after
an encounter with a resident with perfume.As I was changing colors , my
airway was blocking and I am told I would be intubated and was explained the
procedure.
I told them "no way!" Not in my throat! Unfortuately being in a hospital
where my condition is really unknown to them, they had no idea that putting
a tube down my throat would problably land me with a respiratory arrest as I
did before. Because of my disease, the anatomical structure of my larynx is
not what it used to be. Also it didn't help that I had trauma during an
intubation during a past surgery.
So, the adrenalin continued, meanwhile they watched my heart getting more
and more affected, which I was already aware of from the past. At one point
there was turning point and I was regaining ground, once you start to gain
ground they are ready to throw you out of ICU. They have a step down unit
where there are five patients with a nurse in the room. Unfortunately,
because of my allergies, this was impossible, they couldn't grasp what was
so important since they didn't know my history too well. This is where a war
started. Between Donna and my sister-in-law, they was no hope for these
people to throw me out of the ICU. I tell you, don't ever argue with Donna,
she is like a "bulldog" won't let go.LOL
So, finally several hours after, I was transferred to a private room with
frequent nursing visits, doctor on the floor, my husband standing guard,
just lets say I was well surrounded.
I am home now and gaining ground slowly, I do my oxygen treatments and
inhalation,plus my IV treatments with my nurse. I figure in a few days, I
will be pretty good. I am up for a five day cycle of Clindamycin next week
which pretty well floors me, my breathing gets bad, BUT... after, I feel
sooooo good, it is well worth it.
I can picture Geoff right now nodding his head" I told you so!" I am
okay....still alive and kicking....
So, I will get back to my bed and rest for awhile. I am thinking of all of
you. Big hugs to all!
Kathryn
I got this from a newsletter I get
Publishing unapproved drug information on the Internet will become a
felony, punishable by up to ten years in a federal prison if a bill
currently before congress passes into law. The bill will also make it a
crime to simply link to a web site containing drug information. (There
goes the first amendment. Don't you get the feeling that politicians
hate the net and have a paranoia about the weakening of the power of the
good-old-boys club? ...I sure do!)
Sarah
http://www.radio.cbc.ca/programs/ideas/shows/bacteria/bacttext.html
Article: The Bacterial Revolution
Hi Gang! Geoff Crenshaw here.
My Netscape 4.5 email client got together with my ISP's whacko unit and
togetherthey went nuts this morning. I see they sent out a bunch of
duplicate posts. Sorry about the clutter. :}
--
Geoff Crenshaw
Hello Everyone,
Well, it's been five weeks ago today that I added metronidazole and
allopurinol to my antibiotic protocol. To quickly recap, I took 300mg of
allopurinol three times a day for one week only and I take 2000mg of
metronidazole every thursday and friday (I still take 100mg of minocin
BID 3 days a week but now those days are saturday, monday and
wednesday). I was very pleasantly surprised when after only 5 days I
achieved 75% reduction in symptoms. The bad news was that I also had a
bout of vomiting and much nausea early on.
The super good news is that I have sustained that 75% reduction in
symptoms and for 3 or 4 days a week it is more like 90%! Let me explain.
The cycle goes something like this....
I altered the protocol a little based on some new info, so now instead
of taking 500mg metronidazole 4 times a day I now take all 2 grams after
dinner. So, thursday evenings I take 2 grams of metro. Friday mornings I
notice the "metronidazole taste" in my mouth, but there's not much
nausea. By friday evenings I am starting to herx a bit (low grade fever,
sweats, nausea, fatigue and that "general feeling of malaise") but I
still take another does after dinner. Saturdays mornings have been the
worst for nausea (and the "metronidazole taste" but I still have not
vomited since the initial dosing. The flu-like herx lasts through mid
day sunday when the joints start flaring. Sundays and Mondays are the
worst for joint pain though even through these herxes I am still at
least 50% to 75% better off than before I started the treatment. By
tuesdays the herx is usually all gone and I find myself at around 90%
reduction of symptoms (in fact I feel so good I wonder if that final 10%
isn't from erosion and damage done by the disease). So tuesdays,
wednesdays, Thursdays and fridays I am at 90%! That's more than half the
week! And the other days really aren't sooooooooo bad (you get used to
feeling good very fast!)
These periods of herxing are definitely getting shorter and much less
severe. I am now convinced that the initial nausea and vomiting were
part of a Herxheimer reaction and not due to the metronidazole. I can
also tell that things are really "clearing" out. It seems every day my
problem areas get a little better. I actually ran through my office
yesterday trying to catch a client on his way out! I have had 3 workouts
in the last week on my stair stepper machine (though short, 6 minutes
and at a slow pace, but I was doing it without pain!) which I had
thought I would never use again!
I am still not 100% convinced and I still an waiting for the other shoe
to drop, but it has been over a month now with these dramatic
improvements! I am not celebrating yet (but I am planning another trip
to Europe for september or october!) but I think the party may start
soon!
I would like to reiterate a point or two. First, even though the
originators of this treatment thought that a form of amoebae was the
causative agent, thus they prescribed anti-fungal/anti-protozan drugs. I
don't buy this hypothesis, I still think that the infectious agent is
probably a mycoplasma or some other cell-wall deficient organism. I
decided to try these drugs based on the doctors results and not their
etiological arguments. Remember that metronidazole is considered a
tetracycline drug (among others) so I might conjecture that
metronidazole is working on the same organism that minocin does, just
better.
I will have more blood work done near the end of this month. I am
interested to see if my blood shows improvement like I'm feeling.
I did find what I think is the original source of the "book" and
protocol. It was on Gary Null's web site. For those of you who requested
a text only version of the book should check out the links below and
then just browse your way over to it...
Anyway, this has been long-winded enough already so I will take my
leave. I will continue to update the group and do my best to answer any
question anyone has. I am wondering if anyone else is going to try this,
perhaps I am really wondering why EVERYONE isn't trying it?! Any answers
here?
Take care,
j.
Hi group,
I couldn't resist hurrying over to alt.support.arthritis to see what was going
on. Worth taking a look at the latest discussion on minocycline.
I think Dr. Chiu deserves some more chocolate :)
Chris.
I am still lurking, but I wanted to let you all know that I have been having
great success with Glucosamine.
After one capsule (500 mg) a day for about three weeks, I had about 15
minutes of no pain. At that point, I increased to 2 a day and have been
having increasing improvement in my hands and feet. The swelling in my hands
has gone down and there is a lot less heat in the joints. Also the constant
pain is much lower.
Other joints that were cracking a lot and stiff, such as my neck and ankles
are much better, too. Only the bursitis in my hip is still a daily problem.
It has been about 6 weeks now and I am taking the 3 a day that the bottle
recommends. I notice itchy feelings inside the joints about an hour after
taking the pills.
The doctor was very impressed today and I thought I'd share.
Valerie
Look what the good doctor is now posting on ASA
based upon the latest work by O'Dell et al in Arthritis and Rheumatism ?
August 99.
-------
Regards, Dr Graham Chiu
Prospective Internet Observational Study in Arthritis
Home Page http://www.compkarori.com/arthritis/
Contribute at http://www.compkarori.com/arthritis/contrib.htm
Data Entry at http://www.compkarori.com/cgi-local/piosa.cgi
Well, the good news I sent.
Here's the bad. I got a vaginal yeast infection for the first time in 10
years or so. I did have to take extra antibiotics for dental work, and right
when I started the minocin, I got the worst sinus infection ever, and had to
stop it and take Cefzil. Then I have been on Minocin since May. And (knock
wood) feeling good. Just 6 days ago, I get this yeast thing.
My question is, what do I do, other than treat it topically with Monistat?
I threw out too much money today seeing "the partner of the best integrative
medicine doc" in my city, and he was rude and of no use. Wants to give me
some great smokies tests (stool and intestinal permeability) which is great
but he was so awful I will never see him again. Anyway...I won't go into
details (the visit was terrible), but I won't follow up with him. And I need
your advice on how to do yeast control so can be on the antibiotics for the
long haul. Is vaginal yeast common? Do many of you get this when first
started AP or later? What herbs/supplements do I need to take? There are
so many suggested. Do I need Nystatin? If so, now or periodically or what.
I have put myself on a yeast control diet from Dr. Crooks book, but it is so
restrictive (re: yeasts, molds, and sugars) I don't know if it's overkill.
And I'm hating it. I don't have any other yeast symptoms I know of.
ANY ADVICE APPRECIATED RE: long term control of these yeast guys while we
take minocycline etc.
Thank you.Hope you're all doing welll Wish I could come on line more,but
alas, work interferes (LOL).
Susan
Dear Group:
I have been to doctor for 2nd times since starting AP.
First time sed had shot up to 76 from 42 and RF went down (yay!) to 200 from
290.
This visit I got even more good news!
My sed rate was down to 34 and RF went down even further to 161! This is the
lowest it's been in a year.
And the swelling in my wrists is almost gone and I can use them again!
I am thrilled.
The bad news (true but LOL anyway) is in my next post.
Susan
Hi,
Geoff's post reminded me that I had requested a catalogue and I
received a response that one would be sent. That was about three weeks
ago. Would someone give me the info, please. I checked dogpile and
excite but did not come up with anything.
TIA
Denise
NC
This came out June 22, but many of you may not have come across it.
* MONSANTO CO often uses genetically engineered bacteria to make
one of its sweeteners, Aspartame, in the United States, the
Independent on Sunday newspaper said. But the Aspartame supplied
in Britain was not made with genetically engineered bacteria, the
paper quoted a Monsanto spokeswoman as saying. The use of genetic
engineering to make Aspartame has stayed secret because there is
no modified DNA in the finished product, the paper said. (Reuters
09:27 AM ET 06/20/99) For the full text story, see
http://www.infobeat.com/stories/cgi/story.cgi?id=2560005044-2d2
--
Geoff Crenshaw
Hi,
What is the difference between calcium and bone builder, please?
How much do you take? What's the damage to the budget? :-)
TIA
Denise
NC
I seem to have missed out on the ongoing discussion about using colloidal
silver. Can you all please contact me and let me if you've had good results?
I know a man who says we can cure RA by drinking several glasses a day of
water that has colloidal silver in it. What is your all opinion about this?
Shirley Hillard
Thought maybe youall would find these of use.
http://www.dreamscape.com/frankvad/search.health.html
Sarah
Hi Sarah...
This is a great site......I am an artist and art instructor and skipped
right past the medical stuff and went directly to the art stuff - am always on
the lookout for different art websites...thanx for this one! (I will eventually
get around to the medical stuff.)
Be well, Joey
PS...couldn't send this via "reply to author" or "reply to all" - got
"failure notice" from Mailer-Daemon@o " - said something about a chat site??? I
don't have a clue what's going on, and will only assume you will get this.
http://www.plainsense.com/Health/index.htm
--
Clark Signs:
http://members.xoom.com/sclark/
AP Support Group:
http://www.geocities.com/SoHo/Gallery/6412/
Lots of arthritis and health links:
http://www.geocities.com/SoHo/Gallery/6412/supportlinks.htm
Hi Group
Well I am at it again.. Get over a total knee replacement and now am battling
thyroid
nodules.
Had a fine needle biopsy under Ultra sound and they found "atypical" cells.
Went to see the surgeon this am and am booked for a partial, maybe complete
Thyroidectomy.
With the Canadian hospital situation it will be at least a couple of months.
What the #$%%^* next.
Bit of info I got from the DR--- Minocycline causes "black thyroid" This is a
darkening og
the gland just like what tetracycline does to teeth.
Would like to hear of anyones experience with a thyroidectomy.
thanks
Gwen
Thought maybe youall would find these of use.
http://www.dreamscape.com/frankvad/search.health.html
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
People on this board talk about the frequency of oral surgery or other types
of surgery preceeding the onset of RA and hospital workers mention the high
incidence of immune diseases among medical workers. It sure seems to me that
something as invasive as cutting a person in half, putting them on a
heart/lung machine, and handling their heart outside their body during bypass
surgery could result in or trigger RA. My RA came on explosively 17 months
after quad bypass. Better health, Al
I was told that a Brita water filter cannot be left sitting on the counter
because bacteria will grow in the filter and you will be chugging that down.
Who knows. That is why the dispensers are refrigerated.
Any comments on this may be interesting.
I have a PUR water filter stuck right on the tap and when you run the water
the purified water comes out the other end. The filter is limited to 500
gallons of water. When this amount has run through the filter it STOPS
working to ensure that you replace the filter. Filters are about 8 - 11
dollars (cdn). I got a few when they were on sale.
When you need regular water for washing dishes etc. you tip the filter back
and the water runs out the tap instead of through the filter. I find it
more convenient than a container and I tend to use it more for cooking.
Also on those arthritic days I don't have to lift a heavy container and pour
it into a glass.
Has anyone else experienced tenderness and lumps in the armpits? both
sides. I have been having a flare in my ribs/chest and r.elbow and
thought the armpit symptoms were part of it but my GP is sending me for
a biopsy tomorrow to be sure. I would like to hear if anyone else has
had this.
Barbara
From: Joey Sala <joeysala@...
To: "rheumatic" <rheumatic@onelist.com
Subject: [rheumatic] Lyme
Date: Wed, 4 Aug 1999 20:41:24 -0700
Hi Group
Does anyone have information on Lyme disease - specifically the duration of
antibiotic therapy. A friend is currently doing antibiotics and we are
curious because her doctor said 3 weeks is sufficient. Does this sound
correct?
You know how it goes - sometimes we have to educate the doctors, and any
information she can take to him would be helpful.
Thanx, Joey
Anyone have any ideas about this query?
Thanks, Chris.
Hello!! I just returned from my visit with Dr. Franco, and I'm pleased to
say that my blood tests had improved and I'm also feeling quite a bit better
since my last visit. As some of you will recall, a couple of months ago I
was in BAD, BAD shape both physically and mentally. I few weeks ago I noted
some significant improvement. I wasn't thinking about suicide anymore. I
was singing along with the radio (and even dancing along with the music from
the waist-up!). I was sleeping through the night. No more waking up every
time I tried to move. Far less night sweats. Morning stiffness lasted only
1/2-hour instead of 3 hours. I actually went to work at 8:30 every day last
week--something that was impossible for many months.
Anyhow--here are the changes in the most-recent labs:
RF was 190............now 93 :-)
ANA was 1:640...........now 1:320
CRP was 31...............now 18
Dr. Franco was pleased with my progress. He increased my zithromax dosage,
which may, of course, induce a herx. But he wants to continue hitting this
hard. He also injected my knee that's been bothering me. Right at the
moment I'm feeling quite good!! :-)
Thanks for listening and being there during the highs and lows.
Lisa
Ethel said:
<Well, it seems nothing is off topic in this group anymore - not even
<incontinence so here goes -
You might be surprised at some of the questions I have that are just screaming
to be asked! But, I will refrain...........:)
Fondly, Joey
Can anyone tell me what acetylcholene does? Also does anyone have
information on the safety of nettle tea?
Linda
I found this while trying to find out what my MD could have meant about
bringing in the infectious disease people. Thought it might be of interest
to someone else.
Auto Immune or Virus?
Chronic Fatigue, Fibromyalgia, Arthritis, Asthma, Lupus, Lymes,
Depression,Colitis and Diabetes. Chances are good that you, or some
one in your family may be suffering from one of these diseases. The
incidence of chronic and degenerative disorders, has been
steadily on the
increase in this country over the last several decades. Our
society has
been somewhat complacent, accepting these conditions as the
inevitable
consequence of progress and the resulting pollution of our
environment.
"Clinical Management" has taken priority in efforts to treat these
diseases,with little or no importance placed on finding the
cause. Instead,
medical Specialists have segregated various groups of symptoms
into a
wide array of seemingly distinct clinical entities. Each becoming a
separate disease and the exclusive territory of the specialist
that treats it.
There has been growing evidence,however, in the last number of years
implicating chronic viral infections as a root cause for many
neuropsychiatric and inflammatory diseases. This evidence,however
continues to be viewed a "unconvincing" by the Center for Disease
Control.
Dr. John Martin, currently at the University of Southern
California School of
Medicine, detected a herpesvirus-related DNA sequence in several
people suffering from Chronic Fatigue syndrome. Electron
micrographs of
these virus suggested a type of herpesvirus, but the growth
characteristics
and reactivity pattern were not those of any known herpesvirus.
He named
this virus "stealth" virus, because of it's apparent ability to
occur in the
absence of inflammation. By 1994, Martin advanced the idea of a
spectrum of neurological illness potentially attributed to
stealth virus. He
had isolated the virus from patients suffering from, depression,
dementia,
fibromyalgia, multiple sclerosis, schizophrenia, and autism.
In 1994, a group of over forty patients in Trinity County
California,
previously diagnosed with a wide range of inflammatory or autoimmune
diseases, were all found to test positive for Parvo, a virus
known to be
devastating to dogs, but considered benign in humans, making this
one of
the largest groups of patients with seemingly unrelated diseases
to be
identified as having a common underlying viral infection. This
group led by
a Sharre Tommisc, made pleas to the state and the CDC for further
study
of this virus and were met with disbelief, resistance and
out-right criticism
from the medical hierarchy. Frustrated and disgusted, Tommisc
continued
to study the virus on her own, finding what appeared to be a
limitless
number of patients that fit the criteria. Many, already diagnosed
with any
number of "autoimmune" or "inflammatory" diseases were receiving
chemotherapy and steroids as treatment. Tommisc too,began to suspect
that the growing number of "autoimmune"diseases could in fact be
attributed to an underlying viral infection. That many new forms
of viruses
often go unrecognized, because of this country's history of
rejecting the
notion that animals and humans may share the same virus via
parasites or
soil.
Martin points the finger at contaminated vaccine lots found in
early years
of the Polio vaccination programs and suggest that animal viruses
may
have been inadvertently introduced into humans. "If a vaccine
program
were to be initiated today" says Dr. Martin "One surely would not
import
wild monkeys from Africa, create short term primary kidney
cultures, add a
human virus and administer the crude gamish derived from virally
infected
cells to virtually every child in the country." Monkey kidney
cells are used
for Polio and Adeno vaccines, while dog and duck kidney cells
have been
used for rubella vaccines and chicken cells used for measles and
mumps
vaccines. Martin and Tommisc both suspect these animals viruses,
possibly now co-mingled with human herpes-virus, to be the cause of
many of the diseases they are seeing today.
There is growing sense of frustration with the federal public
health system
and its limited response to increasing evidence of unrecognized
viral
infections, and with what appears to be a resistance on the part
of those in
authority, to face the issue of prior, if not present, vaccine
contamination
and the possibility that animal viruses have been introduced into
human
beings. This paper was written to assist the patient suffering
from chronic
neurological, degenerative or inflammatory disease. It is our
hope that you
will be tested for an underlying causative agent, and in doing so
will be
able to avoid inappropriate treatment that may result in further
complications of the disease. The broad range of symptoms are
limited
only by the complexities of the body.
What your doctor will tell you: Your doctor may tell you what you
have may
have started with a virus but now it has become something else.
That the
virus set off an autoimmune response evidenced by autoantibodies
that
are now attacking your body. They may tell you that you are
suffering from
the aftermath of a viral infection that will eventually go away.
They may tell
you that you have a genetic predisposition or weakness, or you have
allergies to your environment. They may tell you the only way to
control this
"new" disease is with chemotherapy and prednisone.
What the people in Trinity County Found: In 1994-95, over one
hundred
adults and juveniles in a small town in Trinity County,
California were
identified as testing positive for Parvo virus. Most of the
people in the
group had been previously diagnosed with the following diseases;
Lupus,
lymes, Wegener's granulomatosis, encephalitis, Bell's palsy, Chronic
fatigue, arthritis, fibro myalgia, thyroiditis, vasculitis, heart
disease,
pneumonia, carpel tunnel, asthma, depression, hepatitis, colitis,
Crohn's,
menopause, pneumonia, migraines, gall stones, and more.
What you may be experiencing and why: Most symptoms find their
origin
in the epithelium. The broad range of symptoms is only limited by
the
complex capabilities of these cells. This means if the fastest
growing cells
in your body are affected, whether by damage or inflammation, the
resulting array of symptoms remains the same. These fast growing
cells
are the very life of your body. They line your arteries, your
stomach, your
joints. They create the barriers that keep pressures and balances
in your
body and help protect from outside infection. From your skin to
your heart
valves, the production and health of these cells is vastly
important to the
condition of your body.
The following is a list of symptoms experienced by the Trinity
group. Some
attempt has been made to give a small amount of order to the vast
number of possible symptoms. The following are the most common,
suffered by the largest number of people.
Initial symptoms can include: a flat rash on the legs and or arms
that
comes and goes with exposure to heat, followed by a moderate to
severe
bronchial infection. Within a week, you may begin to experience
joint
pains. Some people experience chronic moderate pains that can
last for
many months. For some, the pain so acute, getting out of bed
seems an
impossible task. The most difficult movements are sitting down or
standing up. The pain in the hips and knees can be so
excruciating that
help is required. The pain is described as sharp stabbing pain
attacking
your joints. Your feet may feel bruised and it can be very
painful to walk on
them. Even the small joints of the fingers can be affected.
Shoulders,
particularly the left shoulder, can also be very painful. Severe
headaches
that may have your doctor treating you for migraines,
Encephalitis, or even
ruptured discs in the neck, have been experienced. People have
reported
that it is sometime difficult to focus or read. Many experience
sleep
problems. Memory loss, difficulty putting thoughts together, or
executing
simple problem solving, are common complaints. Few people can
clearly
remember the acute period of the disease. They appear to be
stupid and
listless. They may begin having anxiety attacks, and/or
depression can be
severe. Coupled with the overwhelming level of fatigue and pain,
a person
can be reduced to not caring whether they live or die.
Digestive problems, bloating and tenderness of the abdomen,
making it
difficult, if not impossible, to button pants or skirts.
Vomiting, nausea, and
chronic diarrhea have been reported and a person may appear to have
many new food allergies. Numbness has been reported in the eyelids,
cheeks, lips, fingers, thighs, and lower arms, along with shaking,
weakness and faintness. Swelling, or water retention is most
commonly
seen in the ankles,feet,fingers, eyelids, and lips. Many can no
longer fit
into their shoes and ankle bones disappear. It can be difficult
to clench
your fist in the morning from the swelling of the fingers.
Extreme changes
in blood pressure have been experienced, also several case of
increased
cerebral pressure. As the truly acute phase of the disease begins
to pass,
petechiae (small blood spots) may appear around the joints most
severely
affected. They have also been found around the cuticles and on
the soles
of the feet. Anemia may begin at this time and may be anywhere
from mild
to severe and may last indefinitely. Bleeding into the lungs,
bladder,
intestine, and stomach has been reported along with spontaneous
bruising, change in menstrual cycle, or onset of menopause.
Significant
weight gain or loss, at the onset of the infection from
inflammation of the
thyroid.
Thinning of the hair, changes in skin texture, heart murmur and
palpitations. Pneumonia. Asthma, fibroid lesions, lung
infiltrates and
chronic bronchitis. Symptoms may shift from one group to another
over a
period of time, with each new group the risk of misdiagnosis
increases.
Chronic infections can last from months to years. If animal
viruses have
been inadvertently introduced in humans, the sooner we find out, the
better. If you are suffering from one of the disease mentioned
above, we
would very much like to hear from you. It is important to
identify as many
cases as possible and bring them to the attention of the public
health
system. There are efforts being made to setup a laboratory who's
main
focus will be the study of these virus and how they manifest in
humans. It
will be headed by Dr. John Martin and called, The Center for Complex
Infectious Diseases, CCID.
We have come together in spirit, with the desire to see that people
suffering from these viral infections receive compassionate,
supportive
and appropriate care.....Sharre T.
For more information about how you might be a part of this study,
call one
of the following numbers:
CONTACTS: GEOFF@... (GEOFF LEWIS)
seasmoke@... (SHARRE TOMMISC) PHONE: 541-547-3502
wjmartin@... (JOHN MARTIN, MD) PHONE: 818-799-4500
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Hi Group,
Does anyone have any experience with vasculitis? I had to go off the AP in
March because my MD suspects hypersenstivity to Minocin. since then, I've
run a constant low grade fever with dry cough. Last week, i developed
swollen ankles with red pin dots and streaks under the skin. Bones above
ankles were very sore also.
My hemoglobin is down to 8.9 and my MD is now suspecting vasculitis and
says he will call in infectious disease people. I haven't a clue who he means.
I would really appreciate any info that anyone can give.
Joyce
Hello group, and particularly Ethel.............
Thanks to everyone who replied to the water issue. One thing that is made clear
to me is that I've been pretty much doing what a lot of others are doing;
cutting back on fluids when bathrooms aren't readily available, and guzzling
when I get home. Maybe it isn't so important when you do the drinking as how
much you drink.
Well Ethel..... I feel like I've been soundly scolded! And I want to thank you
for that.....every once in a while I need a good butt-kicking to remind me what
I already know! And, I'll bet you reminded more than just myself!
I would like to clarify my gender here, once and for all, I hope. Joey is my
nickname - short for Josephine - I am of the tender gender.
Having said that - I'll add that if I were a guy I wouldn't hesitate relieving
myself where ever I happened to be. (Well, maybe not just anywhere - but you
get the picture!) So, a quart jar and a closet aren't really suited to my
particular needs!
Again, thanx for the input.
Be well, Joey
For all those who want to go through such extensive and expensive treatment,
go for it. There is another way. I went to 3 specialists to be dx'd. I had
a classic case of TMJ and the specialists couldn't figure out what was wrong.
One even said he had several patients with same symptoms. Riding in the car
w/ac on was the worst part. He said his patients had that too. And if I
found out what was causing it to tell him!! My chiropractor told me what was
wrong. Then he did some adjustments to my jaw and over a few trips cleared
up the problem. (It's due to stress--duh!!) Anyway, it only bothers me once
in a while now. When my jaw begins to pop or my ears start hurting I make a
beeline to the chiropractor.
Gloria and Earl sd 4 yrs in the lungs AP 3 yrs oral and iv
Here's the good news. I have RA--Since being on colloidal silver, Minocin and
other antibiotics and now using RA SPES (1 week), I actually shuffled to the
fridge today with a walker!!! About 10' there and back. I don't have
wheelchair access to my kitchen and had a small emergency as my aide didn't
show today. This is the first time in 1 year and 4 mons that I have 'semi'
walked! I was on antibio soley and not improving. I added the colloidal
silver and have seen tremendous improvement--pain is gone, joint snapping
gone, I couldn't put weight on my right leg--well I did it today!!! The RA
SPES herb combo seems to be helping too.
Thanks for all the great info.
Susan L
Got this off a mailing list I am on, It had some info that Joey was asking
about recently (see under the first TMJ info heading, about those crackling
and clicking noises! ) and I thought others might want to see it as well.
Liz G
I have to get my blood test today, but wanted to check something. I believe
I read that the SED rate or ESR test has to be done within 8 hours of the
blood being drawn in order for the results to be accurate. Is this true?
Linda
Hi folks, can anyone tell me the name of a Rheumy in the Norfolk/