Ethel, Thank you so much for sharing this wonderful advice. I haven't
heard of these supplements for flu prevention. I will share this with
my family and friends, too. (Hope they made enough of the
Influenzinum! LOL). Jan
hollar9, i agree with the others on a herx reaction and diet. I just
wanted to add, be sure you are taking Probiotics! That is the most
important supplement, if you aren't already taking it. Jan
Here are the blood results- 17 Aug 2006:
U & E, FBC, LFTs - normal
ESR = 19 ( was 43 on 05/12/05)
CRP = 9.2 ( was 52.6 on 05/12/05)
I started on Minocin on 08/11/05, 100 mg 3x week until a month ago
when I upped it to 100mg 5x week.
The results seem very encouraging and I thank you for your care. Your
comments on these results would be welcome.
Ken Pearson.
I am newly diagnosed with R.A. and feel fortunate to have found this site. Took
Plaquenil the first year and had already come to the conclusion that there has
to be another way to battle this so started reading everything I could get my
hands on. The antibiotic therapy is the only program that made sense to me and
luckily my G.P. was willing to work with me. As autoimmune tends to do, it is
not happy with just one disease and is now attacking my thyroid. I was
wondering if the antibiotic therapy may also help with that. Started on Minocin
3x/wk, but haven't been on it long enough to know.
Thanks for the informative posts we can all benefit from.
Kim
Hello everyone
I haven't posted for such a long time, but require advice if anyone
has any suggestions. I was on Minocin tablets (reddish orange)I
think made by Weyth 100mg twice a day, mon/wed/fri, and was doing
brilliantly to the point I would say I was in remission. Then I had
problems in getting the tablets so I switched to Minocin MR by
Lederle (capsules maroon/cream) same doseage etc. I seemed to be ok
on these but didn't feel I was doing as well on them, perhaps a
herx, not sure. These capsules have also now been discontinued by
the company, or at least my pharmacy can't get them. I was conscious
to take a brand name as opposed to generic (which I know doesn't
work for me) so suggested to my GP for me to try Sebomin (another
brand name minocycline).
I am now either having the worst herx in the world ever, or its not
working and my arthritis is coming back with a vengeance.
I'm reluctant to see the rheumatologist as they will want me to go
back on metho or other toxic stuff. I've asked the rheumy nurse to
do me a blood test, but I'm not sure what results I should be
looking for ie which would indicate flare, or herx. My GP takes her
lead from me as she has never treated with AP before so we are
working blind here, which is why I need some advice and guidance.
Please let me know what you think if anyone has any ideas.
Especially if anyone has tried Sebomin. And what are other people
taking. It is impossible to get over the counter antibiotics in the
UK and I would be willing to order them online from abroad if
necessary and if I can get them.
Many thanks
Carol
HI, I ordered mine from a company, www.wholelifefocus.com Think they are
called acupeds, I had seen them in catalogs, but were much more expensive in
the catalogs.
They worked wonders for me, I need to order more, I felt energized and
awake. Sort of like I feel on steroids but without the nasty steroid
effects. (was on steroids for 6 yrs) so the acupeds are a blessing. Much
less muscle stiffness...
I really like the way they made me feel and since they seemed to help me, I
decided to post my info on our rheumatic bb. So far, the consensus has been
all good for them.
Ingredients are:
Pearl stone
Loquat Extract
Siberian Ginseng
Tourmaline
Organic Acaricus Mushroom
achyranthis radix
Thanks Chris for banning that Islam post.
Susie
Hi Chris,
I was pleased to see a doctor near me on the list of Australian doctors. I went
to see him
and he said that though he's heard of it, he doesn't know about the antibiotic
protocol and
doesn't know how his name got on the list. His name is Dr. Dr Karel Kromek,
Argyle
Medical Centre, Argyle St. Mullumbimby, NSW.
It would probably be good to remove him from the list. He's primarily a
nutritionist. I'll
check out some in Brisbane though it's a long way from me.
Cheers,
Ros
If you have taken fish oil for several years, I would appreciate it if you
would write me privately. I'm a little concerned about possible negative
effects and wondering if there should be an occasional break from it.
Thanks,
Linda
Q Best Way to Defeat Lyme Disease?
What do you recommend for Lyme disease? My doctor suggested
bismacine, but I've heard that the FDA is against it. Why?
A Answer (Published 10/3/2006)
Lyme disease is an infectious disease transmitted by bacteria
carried by deer ticks. If you recognize the symptoms early on, the infection can
be eliminated by a few weeks' treatment with antibiotics (doxycycline,
amoxicillin, or cefuroxime axetil). However, if not promptly diagnosed and
correctly treated, Lyme disease can lead to severe, chronic symptoms including
arthritis and nerve damage.
The FDA has, indeed, warned against bismacine (also called
chromocine), which is an injectable product used to treat Lyme disease. It is
typically prepared by compounding pharmacists and administered by alternative
practitioners. Bismacine is not approved for the treatment of anything,
including Lyme disease.
One person who received the compound died in April of 2006, and
another was hospitalized a month earlier. Severe side effects have been
reported, including kidney failure and cardiovascular collapse. If you've taken
bismacine and notice any unusual symptoms, see a physician (not the one who gave
you the shot) and explain that you were injected with this unapproved compound.
It contains large amounts of bismuth, a heavy metal that can harm the heart and
kidneys.
While we're on the subject of FDA warnings, in 2005 both the FDA and
the Centers for Disease Control cautioned against tests for Lyme disease used by
some commercial laboratories. The tests include urine antigen tests,
immunofluorescent staining methods to identify the causative bacteria, and
polymerase chain reaction tests to spot bacterial DNA in blood and urine.
Neither the accuracy nor medical usefulness of these tests has been adequately
established. Legitimate diagnostic testing for Lyme disease should begin with an
enzyme immunoassay. If you test positive or the results aren't certain, the next
step is a standardized Western immunoblot assay.
The deer ticks that carry Lyme disease are so tiny that they're hard
to see even when fully engorged with blood, and not everyone infected develops
the tell-tale "bull's-eye" rash that signals infection. Because of this, be sure
to see a doctor experienced in diagnosing and treating Lyme disease if you live
in an area where the disease is common and experience any strange skin rashes,
fever, or joint pain, all of which can
be Lyme symptoms.
As for prevention, a vaccine developed to protect against Lyme
disease is no longer available because of lack of consumer demand. The disease
used to be confined to Long Island, New York, and Connecticut where it first was
seen (it is named after the town of Old Lyme, Connecticut, where the original
cases were diagnosed). Although incidence is still highest in the northeastern
United States, the disease has been reported throughout the country. You're at
highest risk of encountering deer ticks in wooded areas, so be vigilant. When
you're in infested areas, wear light colored clothing with long sleeves; be sure
to tuck your pants into your socks to keep ticks from crawling up your legs. As
soon as you get home, wash yourself and check your body for anything unusual.
Have a partner check your back.
The best information I have found on the treatment of Lyme disease
is in a new book by my colleague, Qingcai Zhang, M.D., a leading practitioner of
modern Chinese medicine in New York. It is available here:
http://www.amazon.com/Lyme-Disease-Modern-Chinese-Medicine/dp/0967721318
Andrew Weil, M.D.
Have you developed Lyme disease? Click here to describe your ordeal
in our discussion groups
http://www.drweil.com/drw/u/id/QAA400050
Hi Gang;
Here is an interesting article that was posted by the Roadback
site.I have Celiac and did not know it.It did so much damage to my
system that today I cannot touch beef and dairy,lamb legumes,red
grapes,citrus and anything from sugar cane although honey and corn syrup
are o.k..It took over a 18 months to clear all the problems,AP then did
miracle and I was soon in remission.Diet does make a difference. Lynne
G./SD
http://www.roadback.org/cgi-bin/eboard30/index2.cgi?frames=no&board=Main&mode=Cu\
rrent&message=75038
<http://www.roadback.org/cgi-bin/eboard30/index2.cgi?frames=no&board=Main&mode=C\
urrent&message=75038
I've been attempting to take fish oil soft gels & to get a therapeutic
rheumatic effect, you just have to take too many. I know that you don't
have to take too much of the Carlson's fish oil in liquid form, but I need
to know how much. I know it's been addressed before & I should've saved the
emails. I know Harold knows this regimen but I think others do too. Also,
in evaluating Krill oil, it doesn't appear as though the concentrations of
EPA and DHA are as high as regular fish oil? Does anyone know what a
therapeutic dose (for rheumatic illnesses, not cardiac benefit) would be?
Patrice
_____
Minomycin can be ordered from offfshore suppliers. Most recently I ordered some
from freedom-pharmacy since it also had excellent prices (it costs about 5x
more at a US pharmacy). But if you've relapsed due to an ineffective brand of
minocycline, you may also want to consider switching to (or adding) Zithromax
(azithromycin) for a while. Zith is very effective treatment for mycoplasma
infections and kills it off rather quickly so be aware there could be a
significant herx when starting it.
improvement has been remarkable. Hi Peggy,
Hi Peggy,
Can you tell us the dose of nystatin you use? thank you! ew
I just have to get this off my chest. I worked Monday and Tuesday
of last week. Wed. Thurs I spent in bed. Friday I went to the
doctor because I felt awfull and my ear was leaking guck. he told me
I had ear infection and gave my antibiotics. Also a new drug for the
RA
Saturday when I woke up my face was swollen and my eye lid swollen
shut. I thought it was infected, and there was a marble size lump
in front of my ear. sunday there were more marbles in front of my
ear, my eye lid was swollen shut and there were blisters on my
forhead. My hair line hurt like crazy. Ice didn't help, wet heat
did get my eye lid down a bit. So Monday morning back to the
Doctor.
I have Shingles, on my face. I've never heard of it on the face.
Today my whole forhead is swollen and blisters across it.
I got upset this morning with the phone company and started crying
and then my whole body started hurting and has hurt all day long. I
took a hot shower and have had the heating pad on me. Then went to
make dinner and burned my finger and flipped potatoes all over. The
chicken wasn't done, I tried to cook it in a crock pot but hadn't
given it enough time so I had to fry it and cook the potatoes in the
oven. After I burned my fingers I just cried and cried. I couldn't
stop. Finnally my dear husband barrowed an ativan from his mother
and I calmed down but my body still hurts. my wrists, elbows, knees.
upper arms and upperr legs. I can't sleep even with the Ativan.
I couldn't sleep last night because the muscles in my legs hurt and
my knees hurt.
I'm frustrated. I go to the rhuemy next wednesday but how to I
survive untill then?
any advice?????
People try not to get Shingles. everyone ought to have the chicken
pox shoot even if they have had the chicken pox because that is what
causes shingles. The chicken pox virus that stays in your body.
sorry for carrying on, it has just been one of those weeks. and I
haven't been able to work since last tuesday. That doesn't help
finances any.
Robin
I'm one of the newbies (to DM and to this list) and am so thankful to
find the list and the support. The flurry of recent activity
overwhelmed me too. I switched to DIGEST mode and now only get one or
two emails a day. The new format of the digests makes it easier to read
too. You might want to switch to digest too, Gwen. That way you won't
get so many emails and you can just skim for topics of interest and read
only those. --Celia :o)
Just a quick note to let you know that I am getting a lot of joint and muscle
pain relief from an herbal product called O24. Apparently it has been and/or is
being used by the US Olympic team instead of anti-inflammatory medication.
Linda
I know this is supposed to be a concern in children only but it is happening to
me. Has anyone experienced this? I have been on the AP for about 6 months now
and have really noticed a difference in my teeth. They first developed a
grayish tinge and now they look quite yellow. Does anyone know if this is
permanent?
Maggy
Susan..... I know doctors are sold on the idea that all generics are as
good as brand names...and often they are.....yet for me generic did not pack
the
punch that the time released name brand does. You see it may not be the
medicine but the time release properties of the brand name that make all the
difference. Having been on the old generic by lederle that was time
released...and no longer avaliable as a generic...I can tell you that it did
work.
Later I went on another generic that was not time released and came out of
remission on it. PANIC TIME!!!! I ended up biting the bullet and paid the
price
for name brand and went back into remission. Yes I HATE paying that price
for a silly little pill. Unfortunately that pill makes the difference between
misery and no pain at all. So I guess, for me, the question is whether I
want the pain in my body or the pain in my wallet...........guess I will
opt for the wallet!!! Many others have had to ponder this same question.
If you feel you are not getting where you want to be on the generic, you may
want to bite the bullet and give the name brand (time released) a try. Just
an opinion......Martha
Has anyone used epsom salts in a basin, for hands, elbow, feet? How much would
you put in the hot water?
TIA
Denise
Pray the Rosary
Hi group,
Some of you might like to participate in this survey. If not, just hit
'delete' :)
Chris.
Begin forwarded message:
I know we've had a lot of discussion about Vitamin D supplementation vs. the
Marshall Protocol. I'm currently supplementing with it, but wondering now that
it is sunny should I lay off for the summer? I can't remember. thanks --e
Anybody in the group every hear or do an "ionic cleanse"? If you have could you
contact me. I have been reading about this and have found someone who does this.
Any thing that I need to be aware of?
Thanks
Roni
Thank you for the responses :-) Unfortunately for me, I am unable to get into a
tub which is why I wondered about the amount in a basin.
Denise
Pray the Rosary
jhanson@... recommended this kaisernetwork.org Daily Report story to
you.
Message from sender: I thought you would be interested in this.
Some Patient Groups Have Financial Ties to Pharmaceutical Companies
The Philadelphia Inquirer on Sunday examined how "many patient
groups and drug companies maintain close, multimillion-dollar relationships
while disclosing limited or no details about the ties." According to the
Inquirer, "such coziness raises questions about the impartiality of groups that
patients trust for unbiased information" and also "poses a challenge for groups
trying to hold patients' trust and still raise money to serve them." The
Inquirer conducted an examination of six patient groups -- including the
American Diabetes Association and the National Alliance on Mental Illness -- and
found that they "rarely disclose[d]" ties when discussing or lobbying for
donors' drugs. According to tax returns and annual reports, the six advocacy
groups combined received at least $29 million from drug companies last year,
which accounted for percentages of each group's revenue ranging from 2% to 7% at
the Arthritis Foundation to between 89% and 91% at the National Gaucher
Foundation. The Inquirer reports that the patient groups seemed "to be slower to
publicize treatment problems than breakthroughs," and "few openly questioned
drug prices." However, "the groups perform an important function by providing
services unavailable elsewhere, such as patient education and help in obtaining
medication or affording insurance," according to the Inquirer. Jerome Kassirer,
a Tufts University and Yale University medical school professor, said, "These
organizations are susceptible to industry influence because they have trouble
raising money themselves." However, Marc Boutin, executive vice president of the
National Health Council, said the leading not-for-profit organizations have fire
walls to protect them from donor influence (Ginsberg [1], Philadelphia Inquirer,
5/28).
Disclosure Rules
In response to concerns that drug manufacturers might be influencing
not-for-profits, some members of Congress and other patient advocacy groups are
urging legislation to create stricter disclosure and tax enforcement of
corporate donations, the Inquirer reports. The Senate Finance Committee is
probing industry support for not-for-profits and individuals promoting drugs for
off-label purposes. Committee Chair Chuck Grassley (R-Iowa) is looking into the
enforcement of taxes on the benefits drug manufacturers receive from
not-for-profits. "The public has no way of knowing that the information from
these groups may be biased in favor of the drug companies that fund them,"
Grassley said. In addition, a coalition of not-for-profits is urging a variety
of changes in some tax forms. However, many patient groups and drug
manufacturers argue that they already have safeguards in place and new limits
might prevent funding for the not-for-profits (Ginsberg [2], Philadelphia
Inquirer, 5/28).
Sign up for for email delivery of the Daily Reports, the Kaiser
First Edition, or any of our other free email alerts.
Email DailyReports@... with story submissions and
press releases.
kaisernetwork.org -- a free service of the Kaiser Family Foundation
-- provides in-depth coverage of health policy news, debates and discussions to
policymakers, the media and general public.
Hi,
Are you able to try alternating courses? I think Nicholson uses for
that for Gulf War etc. 6 weeks of Minocin, and then 6 weeks of
Flagyl.
--
Graham Chiu
http://www.compkarori.com/forum/
Ok I started the protocol basically on my own. I've been getting some
good info on the diet I got the Multi Vitamins/minerals, the
probiotic, the daily essential enzymes, and the omega 3 fish oil. Now
what I'm confused about is the food I can eat. I bought organic
spinach, lettuce, carrots, and this organic long grain rice (all
natural). Also I bought this soy sation cheese produced without using
biotechnology. Is that good to eat? I bought some veggie dip is that
good to eat? and all natural ranch dressing? I've only been eating
whole grain bread and fish. What else can I eat that will still allow
the protocol to work faster and better? and do organic make a
difference and why? also What are the things I just should not eat and
some good tasting things I can eat?
Greetings. my name is Mike and I am new to this listserv. I have a relatively
long history of RA, even though Im only 36. In 1996 I began having joint pain
and was diagnosed with RA even though I didn't test positive for the RA factor
at the time. About a year after the diagnosis, I came down with a nasty
auto-immune disease called goodpastures syndrome which nearly killed me. While
in the hospital for gp syndrome, I began a steroid and chemo treatment that
forced the disease into remission.
I have begun experiencing joint pain again and have now tested positive for
the RA factor. the number attributed to the test was 106, which my doctor said
is relatively high. I was on a drug called cymbalta which is an antidepressant
that has a nice side effect for pain relief. It worked for about a month and
now seems not to have any effect at all.
Im hoping to reach some other people with RA to discuss my situation with and
some of the tests and treatments. I have begun feeling very down as a result of
the pain and the feeling that Im going to be crippled before my new baby is born
in January. I am also curious to know if there are other goodpastures syndrome
survivors on this listserv that would like to discuss it.
Thanks.
Mike
My name is Sylvia. I have had RA for 35 years. I am in a wheelchair
and much of my body is deformed. I have started taking 200 mg of
Minocycline a day, but it doesn't seem to help much. My doctor is
willing to give me this antibiotic, but I think I need to find a
doctor that is more knowledgeable in antibiotic therapy instead of
just going to my GP. Could anybody recommend a doctor. I live in
Vermont, close to the Canadian border. If someone could recommend a
doctor in Vermont or New Hampshire or as close to me as possible, I
would really appreciate it. Thank you. Sylvia
Hi, I am new to this group. My rheumy hasn't yet officially diagnosed
me with RA (it has only been a month), but all my blood tests are
positive (RF of 29, and CCP of 250!). The CCP test results scare me,
as do the possible medications for RA, so I am looking for all options
in treating my disease. How much faith should I place in these blood
tests? My fingers and two joints have swollen, and I have flu like
symptoms often.
Can anyone recommend a good rheumatologist, one that would be
supportive of AP therapy in the Seattle area? Any advice would be
appreciated!
Thanks so much, Melissa
Now when I look up polymyositis and Dermamyositis it says muscle
weakness and high ck but I dont have muscle weakness and my ck was
2200. What could this be?
Hello everyone
I have been lurking on this website for quite a while now, but prior to that,
I was an avid user and contributor, because I had RA and it really got me down
sometimes, and I spent lots of money, time, energy, and emotional investment
to get healed. It was very frustrating a lot of the time, there was a lot of
anger, great bouts with pain and depression and indescribable feelings of LOST
HOPE.
The reason I am writing, is because I was meditating this morning and was
thinking of all the suffering a lot of you have because of these stupid
diseases, and while I can't pass on any information of a medical nature better
than the people who are already here, what I can pass on is the idea that one of
the best ingredients for getting well is FAITH.
That is, faith in the body's natural and miraculous ability to heal itself.
Sometimes the body needs the help of good care as in diet, exercise, alternative
therapies, and then prayer or whatever sustenance for spiritual growth - but it
can and does do a remarkable job of healing itself when you can find the key to
unlock that door of healing..
I think you must have FAITH that this too will pass. One of the biggest
problems I had when I was totally bed-ridden was the idea that this was all
there was...it was horrible. It took everything away from me...the happiness I
would have had with my two young children, my wonderful loving husband, my good
home, my future...you name it. And worst of all, the ability to fight the pain
and disability.
I'm sorry this is going on for so long. The reason I'm talking to these
points, however, is because I would like to extend to you the idea that there
is, in fact, built into the human body an incredible seed of strength, stamina,
healing ability, LOVE, and good old WILLINGNESS TO DO WHATEVER IT TAKES TO GET
WELL. And that is what you need to have your good health restored to you. You
can never give up. If one therapy doesn't work, go on to the next, but don't
let the arthritis get a good foothold in your body, for that is what keeps it
from going away. That is what keeps the body from being able to fight to make
you better.
And lastly, I am celebrating over three years of being free from all
medication, doctors - I only see them for broken bones or gashes that need
stitches :) I live under no illusions that this thing could return for another
round...in that case, it would be round 3. I have had long episodes of health
in between other episodes of being bed-ridden...sometimes for a month at a time.
I share this information because I know when I was sick and reading this
website everyday, sometimes an encouraging word would be the thing that kept me
from going over the edge and I truly hope it helps you if you are struggling now
to keep your faith, get the help you need to be healed and not give up.
I saw a T-shirt the other day on the back of a biker whom I'm sure must have
been a vet. and it said "Pain is just weakness leaving the body" I couldn't
agree more.
All my love and gratitude,
Susan
Hi,
Does it mean anything if your RDW is elevated?
Thank you,
Gloria
Hi:
I wanted to put a message out warning people about a dangerous homeopathic
remedy sold iin every box store, grocery store and pharmacy. Echinacea is a
popular plant root that people take to fight colds and flu. Its is VERY BAD for
people with auto immune diseases which RA technically is.
Echinacea works by helping your body create more antibodies, which defend
against virus. In the case of people with autoimmune diseses, our antibodies
are attacking the lining in our joints which causes arthritic symptoms and
reddening and swelling of the joints.
Here is what happened to me...
I had arthritic symptoms and me and docs didnt know why. I didnt test
positive for RA (yet). I began having flu like symptoms. I started taking
echinacea to fight what I thought was the flu. Within a few days I was being
shipped off by ambulance to a hospital because my kidneys were failing and my
lungs were filling with blood. The next day, I started having seizures from
capilaries breaking on my brain and my heart started beating irregularly. I was
fortunate enough to find a kidney specialist who knew what I had. After doing a
kidney biopsy to confirm, I was diagnosed with Goodpastures syndrome. It very
nearly killed me. They forced it into remission with Cytoxan and huge doses of
prednisone.
I am new to this list and wanted to warn people of the danger echinacea put me
in. My symptoms would have come about without it, but the echinacea greatly
accelerated them.
Food for thought.
Mike
This does not ring true at all. Your description attached to echinacea in
herbal doses, not homeopathics. Even the least potent homeopathic has not even
one molecule of the original agent. Homeopathics alter the atomic structure of
the dilutant, normally in water or alcohol. The body notes this structure and
reacts accordingly, providing the correct homeopathic is provided. If the
homeopathic elicits a 'negative' proving, IOW, a bad reaction, it is easily
antidoted with camphor.
What you describe sounds terrible! However, I think you are barking up the
wrong tree with the homeopathic.
Geoff
A friend of yours highly recommends you read this health article:
http://www.mercola.com/display/router.aspx?docid=32996 This article comes from
http://www.mercola.com, one of the Web's most visited and trusted health
information sites.
Thankyou.
I just want to know before I get my hopes up.
I have dermamyositis. My total Ck doubled to 3,461 and my Aldolase is
24.7 since I started the AP Two weeks ago. I'm taking the probiotic ,
fish oil omega3, now enzymes, and following the diet. When I started
the minocycline I went from 6mg to 5mg of Prednisone when I started
the AP and I was moving a table the day before I took the test. Could
that be why? I still have no weakness but now rashes is coming back
which I havent had in a long time. I had this for 3 years...Please
help...Is this stuff making it worse?
Does anyone have experience with the Mayo Clinic in diagnosing autoimmune
conditions? Was it a good experience? Did they provide treatment?
Any feedback is welcomed, public or privately.
Dan B
Jennifer,
You said that you were looking for a holistic doctor. You can visit
www.acam.org to find a doctor near you in Southern California.
My doctor is Dr. Nusbaum from the Center for Holistic Medicine
(www.centerforholisticmedicine.com) in West Bloomfield, Michigan.
Good luck.
Jeff
Hi,
I'm Mia in PA. I have Sjogrens syndrome w/RA. I also have Hashimotos
(low) thyroid. Sorry, I can't spell that! Can barely say it.
I've been seeing the Rhumatologist for about 18 months. He loves to
prescribe pain meds, but the only other thing he ever gave me was
Plaquinil. When it became toxic to me he let me go off it and is not
offering me any hope of remission with anything else!
Someone mentioned that possibly I need to seek out a rhumatologist
who specializes in connective tissue disorder diseases.
My general practitioner is honest enough to say that he dose not
have anyone else my age with the problems I have. He does have a few
other patients who have Sjogrens, but their problems end with dry
eye-dry mouth, and they complain of no other issues.
I feel like I'm close to breaking down in tears - But I dont have
any!
The physical exhaustion is what hurts the most. I want to fight this
disease. Slowly it's eating me alive.
I'm looking for remission. Anyone have advice?
Thanks, Mia in PA
Pat
Please let me know if there are more recent posts that I am not seeing
on this Group.
Cheryl Ferguson
Hi Ethel! Geoff here.
You wrote:
"There are over 1700 people subscribed to this list which use to be very active
until a few years ago when we had some people join us from another group whose
objectives were different from ours.
It caused quite a stir with subscribers scurrying into the 'woodwork', and
things have not been the same since.
These people have formed their own group but now it seems when people do post on
this list for or with information or needing support, responses for the most
part are made privately. This has been a concern to the moderators and we would
like feedback from the group as to whether you still value this list."
Yes, I do.
The last few years the list has indeed lost much of the warmth and friendliness
it used to have. It seems to have gone from a list of people supporting each
other exploring ways to be CURED of these diseases to a list of people
essentially interested in palliation (cloaking the pain from view). I have no
suggestions, and thus cannot complain. However, if we, the listers, as a group
were more motivated to HEALING than 'living with' these diseases, perhaps the
old warmth would return.
Geoff
Acts 2:39
Interesting timing. For awhile now I have been thinking of the list as it was.
I joined around 1996, I believe.
I often wonder about some of the listers. Paula P. posts once in a while, Ute
just recently and the Fairy Lady. Geoff is quiet. Joe G. and Janet in Tulsa
apparently are managing. I wonder about Sarah C., Liz G., Bev in Ontario, Ray
B., Dr. Chiu. No doubt I have missed some folks. We were a community.
Don't even hear about Dr. Franco either.
Denise
Pray the Rosary
One case is as follows :
C3 and C4 in the normal range
IgA ,IgM and IgG in the normal range
beta 2 microglobulin in the normal range
CRP hs : 4 ( normal range 0 -3 )
Sedim rate : 3 ( normal range 0 -15 )
RF : 35 ( normal range 0 - 20 )
ASO : 19 ( normal range 0 - 200 )
C1Q binding : 17 ( normal range 0 - 50 )
Fe : 56 ( normal range 50 - 175 )
CBC ( complete blood count test ) all parameters are in normal
range
Uric Acid : 7 ( normal range 3 - 7.2 )
Total Protein : 7.30 ( 6.20 - 8.30 )
Please advise me for possible susception.
Hakan Arisoy
sonoma_kj@...
This is definitely a trend with this group - that rather than posting to
all, people are posting back privately. It is a terrific loss to me as I had
written in and asked to see all the feedback received from the poster whose
tests were now negative and she wanted feedback on how to continue.
My tests for SD are now all negative. I am at a crossroads on whether to
continue the Minocin, discontinue the Minocin, do occasional clindymycin iv's
or just what. This was a real bummer that no feedback was posted to the
group as a whole.
This list has been my lifeline in the past and it remains valuable to me but
terribly dead and truthfully, because of that, of much less use to those
beginning the journey who might have come here to just read.
I hope this note will spur everyone to set that reply to ALL instead of the
individual sender Sandra
I have a question regarding the enbrel injection..I would like to know
if there are any other people in the group that are taking this and if
they know if the injection site is suppose to bruise all the time. I
have been taking the shot in my stomach and it always makes my stomach
cramp afterwards. My doctor says that the side effects is not suppose
to bother my stomach but it is and I am kind of worried. Please
respond so I can feel better regarding my plight...
Hi Leslie
Anyone who wants to email a reply instead can use the Send Email
button on the right side of the page.
Cheers -David
I have been reading the posts in here but have never been able to
post...been a member since a year ago March. So, i just email folks
with questions and responces to their posts. I recently asked Chris
for help, she is working on it. This is a "test" post to see if it
works yet.
Back a year ago March it was a posts in here that made me search
further for information the antibiotic therapy. I have been on AP one
year and have been blessed with a renewed life....not remission yet,
but on my way. Thanks for caring.
Jan
Hi rann
I've been on enbrel a few months now, have not had any stomach side
effects at all. Are you taking any other medication in addition to the
enbrel? When you say stomach cramps, are you talking high up like
where the stomach is, or lower down where the intestines are?
Abdominal pain has been reported as an uncommon side effect - if it is
bothersome enough ask your doctor to re-read the prescription info and
change you to something else.
I bruise around 25% of the time, probably a small blood vessel I nick
with the needle. Applying light pressure with a dry tissue or napkin
for 5-10 minutes decreases the bruising.
Good luck! -David
Does anyone have to use medicines from Canada or Mexico? And, if so, do you
see a difference or are they as good as American when they're the "brand
name?"
ehgooding writes:
Hi Chris. Would you please let me know if there is a dr. willing to do the ap
near Buffalo or Niagara Falls. Thanks so much.
My friends daughter may have JRA. Does anyone have a doctor in the NY
area who will see a 14 year old and will use antibiotics?
thanks,
Linda
I am about to start AP with 100mg minocin.I have problems with
pills.Can you open minocin capsules and put in apple sauce or are they
to be taken whole? thank you
My internist said to always take doxi with food. Just stay away from dairy when
you take it and be sure that dairy is a least tow hours apart.
DOSING: The absorption of doxycycline is not markedly affected by food, and
therefore, it can be taken with meals. For most infections, doxycycline is taken
once or twice daily for 7 to 14 days. Sometimes, the first dose is given as a
"double dose," that is, twice as large as the remainder of the doses.
http://www.medicinenet.com/doxycycline/article.htm
Hi All
I have been on Minocin since nov 2005 and feel much better. There is a
little swelling around my left ankle.
I had my last depo-medrone shot on 14 Feb 2006 and gave up taking the
NSAID Anthrotex.
My question is should I resume taking this NSAID as I've heard that it
complements the Minocin or should I still refrain?
Please could anyone answer this question.
Thanks
Ken.
Are you the Linda who worked in RTP or the Linda who moved from N.C. to, I
think, Missouri?
Denise in N.C.
Pray the Rosary
I have been on antibiotics since 1997 for MCTD (a type of SD) I
would not go off, although my tests have been negative for years..
there used to be people who said they went off, and their remission
reverted,,,and they never went back to remission....so I never
terminated my antibiotics..
linda
Hi Chris. I didn't get anything on my computer about the drs. in the Buffalo or
Niagara area, but realize that since I live in Canada, I might not get the
script filled in Canada. Do you have any drs. in the Toronto, Ontario area?
Thanks.
I'm searching for a doc in the Toledo, OH area that will try the
antibiotic tx on my Significant Other. So far he's been prescribed
Embrel, Remicaid and Celebrex - all which do not help (and what scary
side effects the DMARDS have!). He had a synovectomy which the doc
botched and he still has pain in his elbow 3 years later! Things like
Vicodin and Motrin don't help - I'm thinking it's more neuropathic
pain and something like Neurontin may be in order? Any comments?
The exasperating thing is that I am a nurse - oncology and hospice
(and manage pain symptoms daily) and the docs he's been seeing are
supposedly the big "experts" in town. Yet they don't address the pain,
or lack of progress. Does someone know of anyone in our area who can
help? I've asked around at the hospice but apparently, end of life
pain management and chronic pain management are NOT the same thing.
Jenny
Good morning everyone;
I have a friend that lives in Jupiter Florida who has SD.I have told
her about AP and she was supposed to see Dr.Arne but she does not have
the proper insurance for this person.Do you know of any other doctors
that know about SD.
Thanks, Lynne G./ SD
I'm sorry thats what I have Dermatomyositis. I have rashes on my
knuckle only. My ck jump up from 1500 to 3400 when I first started
the AP. Now I've been on for a month and its down to 1700. You say
it took you 2 years. I thought I was about to start getting better.
Is the Ck going to go up and down like that. When its up I feel very
sore in my hands only and my rash get worse when it go down it's not
that bad. My question is what should I expect? My disease isnt that
severe so is there a chance it want take 2 years? How was it for you
the first couple of months and what do I have to look forward to.
when my ck was 3600 thats the highest its ever been and I think the
minocycline made it go there but this time I had no weakness like I
did when I first got sick. I couldnt lift my hands over my head or
take a shower but this time it was just soreness and rash. Why is
that?
Has anyone tried the Prosorba Column for the treatment of R.A.?
www.prosorba.com I work with a woman who had this non-drug therapy
treatment with dramatic results. I am trying to talk my mother into it.
What am I allowed to eat. Now I only eat fish and veggies. I have
Dermatomyositis. I have rashes on my knuckle only. My ck jump up from
1500 to 3400 when I first started the AP. Now I've been on for a month
and its down to 1700. You say it took you 2 years. I thought I was
about to start getting better. Is the Ck going to go up and down like
that. When its up I feel very sore in my hands only and my rash get
worse when it go down it's not that bad. My question is what should I
expect? My disease isnt that severe so is there a chance it want take
2 years? How was it for you the first couple of months and what do I
have to look forward to. when my ck was 3600 thats the highest its
ever been and I think the minocycline made it go there but this time I
had no weakness like I did when I first got sick. I couldnt lift my
hands over my head or take a shower but this time it was just soreness
and rash. Why is that?
I have been reading this forum for awhile now. I hope its okay that
I share my situation with you all to make sure that I'm doing the
right thing. I have had severe Rheumatoid Arthritis for over thirty-
five years. I'm in wheelchair and have to depend on others for many
of my basic needs. I was put on a 100mg of Minocycline daily in the
beginning of April. A few weeks later the doctor raised my dose to
200mg. daily, but I still don't feel much better. A few days ago I
went to a doctor who specializes in treating people with Lyme
disease because tests indicate that I might have Lyme disease(the
test is not always accurate and lyme is hard to diagnose). He was
not familiar with treating people with RA, but I was not concerned
because Lyme disease is also treated with antibiotics. He put me on
twelve capsules a day of 500mg Amoxicillin. (6000 mg daily total)
Along with this he gave me 1500mg of Probenecid daily. I haven't
started this yet because I had a stomach bug, but plan to go on
these prescriptions in the next couple of days. I was wondering if
anybody had any experiences with these high doses of antibiotics.
Any comments or opinions would be greatly appreciated. Thanks so
much.
God bless,
Sylvi
The daughter of the late Dr. Emil Wirostko at Columbia Presbyterian
continues his work studying/treating mycoplasmas in JRA eye disease
(uveitis). She might be a good starting point for a pediatric referral.
Dr. Barbara Wirostko
Huntington Medical Group, P.C.
180 East Pulaski Road
Huntington Station, NY 11746
(631) 425-2155
Lynne and Linda,
I know of two ways that someone can find an AP doctor, using two websites:
1) American College for the Advancement in Medicine www.acam.org
There is a referral section. From the home page, go to "Public" / "Find a
Doctor". Enter your zip code, city, or state.
2) International Academy of Compounding Pharmacists (IACP) www.iacprx.org
There is a referral section. From the home page, go to "Referral Service".
Find the compounding pharmacist nearest you, and ask them who they'd recommend
for the condition that you have, or the protocol that you want to use.
Wanted to share some great news!!!!
As we know normal CPK levels are 215 or less. I am currently on a
regimine of 100 mg Minocycline 2x's daily, 500 mg Zythromax daily,
and a slow taper of prednisone (1 mg every 4 weeks) which I am
currently down to 13 mg daily. Plus I take a whole slew of herbal
products recommended/approved by my rheumatologist. Last month I
had a slight set back and my CPK level was at 324.
Drum roll please.....
MY CPK LEVELS AS OF 06/19/2006 (last time blood was drawn):
124
This is the lowest I have been since being diagnosed in August of
2004.
Doing the Happy Dance,
Rosa, NJ
Hi Rosa,
I'm doing the happy dance over here in Washington State with you!
Thanks for sharing your news -- "normal" blood results take on a
whole new light, don't they! In addition to your renewed health,
your blood results confirm (for any doubting doctors, especially)
that the AP really does work -- not "only" for RA, but for the other
diseases, too.
You might want to keep copies of your blood results for tracking, and
for PROOF :-)
Thanks again for sharing,
~Connie
Hello everyone. Thank you again for all the responses I received
when I last posted about the painful nodules and the leg swelling. I
had one thank you message returned (Korea) so again thank you so
much. My SD seems to be getting worse because I continue to have
problems with the swelling and the pain in my feet and lower legs
even when I first get up in the mornings. I've been working on
trying to get the IV treatments. Dr. Franco in CA send me the RX
for the IV's but now I'm trying to get
a home health service to administer the IV's. The
only co. that my insurance might possibly cover
doesn't come to my hometown. So I asked Dr. Franco
about the injections so that I could possibly
administer them myself. Anyway to make a long story
short I seem to be playing a waiting came. I ask Dr.
Franco questions and it takes about a week for an
answer. Things are moving very slowly and during this
waiting game I am suffering quite a bit. I'm really
becoming scared now because of the pain and swelling
in my feet and lower legs. I still have the erethyma
nodosum and I'm just miserable. I feel that while I'm
waiting my body is being further damaged and I feel
helpless. Is there something I should be doing while
I wait. I often wonder if I'm not seeing something
that I could be doing. Any advice would be helpful.
Could I be possibly eating something that is
triggering the swelling? I'm starting to be concerned about
something possibly going on with my kidneys. Thanks, Debra
I'm curious about this stuff in the bath thing. I have an infectious
diseases doc that tells me I need to take my bath once a month with a
cup of bleach in it. (Yes I take a bath more than once a month. I just
put bleach in it once a month for a week.) The Doc says It's supposed
to kill certain naturally occuring bacteria on the outside of the skin.
Anybody have any idea about this??? Related to the peroxide or epsom
salts?
michael
An interesting article with links on dealing with chronic pain.
http://www.mayoclinic.com/health/chronic-pain/PN00054
Hey everybody. I have yet another question. I hope that is ok.
I have not taken any of my NSAID pills in 3 1/2 days and I feel
exactly the same as when I take 2-3 pills a day. I don't feel great,
but not too bad. I'm able to take care of my 2 year old without too
much pain.
I don't have an official dx (probably either RA or ReA)and have not
yet started AP. Can you recommend a supplement that helps with
inflammation? When I search on my own, I feel completely overwhelmed
and don't know what to believe. I've been reading a lot on Dr.
Mercola's site about krill oil and I've also been looking at
Boswellin. I just figured that since I've stopped the NSAID, now
would be a good time to look for something not so toxic, yet
beneficial to me.
I'm crossing my fingers that this is a good sign for me.
Thanks everybody!!
I have just learned that Dr. Barbara Wirostko is leaving private practice
September 1st. If you have used her services, you may want to retrieve your
records before the office is closed.
Ethel
I second this request... this tells me a lot... I am currently on
Nebutomene and I gotta tell ya, I sleep an incredible amount and at the
most incredibly inopportune times... Any other ideas would be
helpful... Thanks ya'll...
michael
Hey ya'll again. This is from someone who has been on prednisone for
the better part of 18 years. Prednisone does have it's bad points. And
I'm one who has been subject to many of its ill effects.
BUT!!!
I have to say, when it was needed the most, it was the biggest help. I
would recomend its use any time it is truly needed. It will take care
of swelling and inflamation, and do it well. Yes it has side effects
but it is well worth them, in my OPINION...
BUT!!!
Use it only as long as you need it. If you have the opportunity to get
off of it, and it will not hinder or worsen your condition, seek out a
way to taper the stuff, under the direction of your doc. And pay close
attention to the taper part of this. If you taper too fast, you may
flare all of a sudden...
Again, just another opinion, but like I said, I've been on it for a
good part of 18 years...
michael
To the moderator,
How do I submit an OT to you for approval So I might get input from the
list members. It's not a solicitation for money or business. It's a
request for life stories...
michael
Hello all,
I have had lupus/MCTD for over 2 years, but am finding lately that I am
extremely emotional. I cry over everything. It makes it hard both at work and in
my personal life. I feel great lately. I know people diagnosed with lupus must
keep their stress level down, but it has been hard, being emotional. I have some
personal issues happening in my life. I used to be must stronger. Has anyone
else experienced this and if you have what were your coping strategies.
Thanking you all in advance for all your postings. I read all on a daily
basis.
Mary
Hi,
Can anyone give me some more info on this test please? My doctor called me
yesterday to tell me that my results on this came back at 30 and normal is 20.
I think she said something about it showing my RA to be more advanced than she
thought (my kids were a bit noisy and I didn't want her to keep repeating
herself) She did say she wants to see me sooner (2 weeks instead of 6) than we
had planned and mentioned that she would probably double my antibiotic dose if I
was tolerating it well so far. I just started them this week. I am currently
on 100mg of minocycline per day. Thank you in advance for your replies.
Maggy
Hello everyone! My name is Hollye - I am 37 years old with 2 young
children. I have RA (diagnosed 18 months), Hidredenitis, Type 1
Diabetes, and Asthma -- I had 2 surgeries last year for HI -- major
flare that hasn't stopped yet -- Mtx 7 pills weekly, Minocin 200 mg
daily -- I feel terrible -- I am so fatigued it is unreal -- but my
biggest concern is the extreme muscle pain and weakness -- any one
esle have this problem? I had test last year to rule out MS, or
Muscle Inflamation of any kind -- I am very confused and in pain --
Thanks in advance for any help or advice.
Hi Hollye
So sorry to hear you are having such a rough time. How long have you
been on the Minocin? Could it be that you are having a herxheimer
reaction - < http://lassesen.com/cfids/herxheimer.htm
start out at 50 mg 3 days a week if the reaction is very strong, 200
mg a day is a hefty dose. Might want to ask your AP doc about it.
Hope you start feeling better soon. -David
Greetings all
Being a writer, as that is one of the few things that I am able to do,
I, go figure, write things And one email, from courttneey gave me an
idea. I would like to write a book with all of your stories, about how
your various diseases came about, what you are doing to treat them and
how you have been doing as of late. I don't know, but maybe someone
just needs to show others a day in the life of, or a few days in a few
lives of
I'd like to see it published, but it would also be a good thing for
the moderators to pass on to newcomers ya think??? Anyone??? Anyone???
Email me what you think, and I'll see in a couple weeks if there is
enough interest and see what to do from there. Remember, this can all
be anonymous
michael
My appendix ruptured when I was 3, 6yrs Thoracic Neuroblastoma
(cancer), 9 right overian cancer,11 left overian cancer,12yrs cysts
removed and adhesions,14 left overian cancer again, 15 more adhesions
removed, 16 gawbladder adhesions and limp nodes removed. All cancer
encapsulated. Now I have seizures, hypoglycemia, raunauds disease,
mixed connective tissue disease and keiloids in one of my scars. No
insurance and I'm scared to death. Oh and my spelling is terrible-
sorry. I just don't know what to do anymore my whole life has been
saved with close calls. I have a lawyer because I was denied twice
because of my age. I am now waiting on a hearing praying to God I will
live without medical check ups.
Dear Group,
In an email from Dr. Franco today, he told me about a 7 year old girl who was
recently in his office. He said the first time he saw her she was 3-1/2 years
old, carried by her mother as she was unable to walk. Last week when he saw her
she was jumping up and down and she now does ballet. He treated her with
azithromycin
So all you parents with children on the protocol, be patient and take heart. As
Dr. Brown use to say, "Eventually you will see light at the end of the tunnel."
Ethel
http://www.healingfoodreference.com/
HTH
Denise
Pray the Rosary
Good to know. When you can, let me know what kind of format you are pursuing,
and I'll be sure to take a different approach, or approach with different
people...
michael
emluv23@... wrote:
Michael,
I have been engaged in writing just that sort of thing for the past year. It
will be published in 18 months. It isn't exactly as you described with stories
from the group but could be similar. Let's make sure we don't step on each
other's toes! Emma
On July 10, 2006 the CF-Alliance information website will be having
another Free Health Book International Giveaway.
For details visit: http://cf-alliance.tripod.com/id5.html
Hi, I'm new here and I have a question. My wife has recently been
diagnosed with Polymyositis. I, on the other hand, was diagnosed with
soft tissue rheumatoid arthritis quite some time ago. It seems to me
that these two disorders bear a striking similarity. What is the
difference, or is it just two different names for the same thing?
Thanks.
Hi Gang! Geoff here.
It is good to remember that there are __no__ foods you should not be able to eat
(save a genetic issue), but there are doubtless __many__ foods you cannot eat
today without pain that either debilitates or is masked by drugs. By food I
mean just that, naturally occurring and growing organisms -- NOT products of the
chemistry lab, e.g., artificial color and flavor, farm-raised fish, etc.
We often get caught up in the diet management area, especially when careful
dietary control leads to full remission of these diseases for so many of us. The
problem is that remission is NOT cure. Remission is sleep, and if you don't
understand that ask anyone who has had any disease in remission wake up. It is
not pretty.
So what do we do? Use dietary management in the same way you use drugs, knowing
that it provides a kind of masking. The masking can provide an opportunity for
you to attack this foe, your enemy bound on your destruction, your disease.
Kill it while it sleeps.
Do not fall into the remission, all is well, go on with life as if there was
nothing left to do trap. I have been there and done that and tell you true: It
is a serious miscalculation of the strength of your enemy, a miscalculation from
which you may not survive.
Geoff
Acts 2:39
Hi, all! I enjoyed reading these personal accounts. ~P.J.
The CF-Alliance is happy to announce the three winners of the 'Tell Us
Your Story' Essay Contest. Thank you to many wonderful writers who
entered.
'Pain is a Circle' by Kara Hash
'Pandora's Box' by Arlene McGinness
'Graceland' by Jane Luft
To Read the Winning Essays, Please Visit:
http://cf-alliance.tripod.com/id26.html
Hey ya'll,
I gotta go away for a couple a days... keep sending the stories. I will
touch base with every one of you when I return to let you know if I got
your stories or not... Sorry to jump ship, but the jungle is calling my
name... (hear it??? there it is... I can hear it, can't you?) oh
well... senile or not, I gotta go...
Michael and little Thordinkin, as my daughters call him...
michaelr_321@...
*CF-ALLIANCE NEWSLETTER CONTEST*
Photography Contest: The Joy of Trees!
Send us a photograph you shot that captures the beauty of trees.
-Deadline: Oct. 15, 2006
-One entry per person.
-Anyone may enter.
*For complete details visit: http://cf-alliance.tripod.com/id21.html
(Permission to Re-Post.)
Good to hear a better explanation. Thank you. I just had a basic
understanding, and my treatment works well. It may not be correct. But
I'm at a stage where if the thing ain't broke, don't fix it. But I will
print out your explanation and take it to my doc next time I go to see
what he says about it compared to my condition... Thanks again...
michael
Hello
I have had the rashes now for 9 months. It all started with my face.
Got the butterfly, then my neck, back, arms. Now I have the rash on my
stomach. My face has patchy long hard areas. From all the symptoms I
have been thought of having Lupus, Dermatomyositis and now I am
thinkingI may have Scleroderma given the patches on my face...
Can anyone help me with a reference to good doctors in the pacific
northwest...Portland, Seattle, Boise.
I have been on Plaquenil now for 3 months...without improvement.
Really appreciate any help.
thank you
Achim
Hello
I live in Boise and have symtoms of Dermatomyositis, Lupus and
Scleroderma.
Could anyone send me a reference of a good doctor...Seattle or
Portland would be "close".
I have been on Plaquenil now for 3 months with no sigh of
improvement whatsoever to my rashes. Now I have to strip like
patches on my skin and patches on my stomach. Previously had the
rashes "only" in my face (butterfly) upper body then arms, now
stomach.
I am desperatly looking for an alternative to Plaquenil....
Any help and reference is appreciated.
thanks
Achim
Hi,
I have only been taking the Mino for a couple of weeks now. 100
mgs. once a day. I had been ok with it and was taking it just
before bed. Next week my doc wants to start me on twice a day. I
started on Celebrex at the same time because I wasn't taking
anything and the doc said the anti would not work well with all the
swelling I had. For the last 3 days I am feeling extremely tired
and nauseous soon after taking it. I'm not sure if this is from
taking it earlier in the day to start accomodating myself to double
the dose or if this is the Herx thing starting up. I am also
getting some pretty severe shooting pain in my joints. Yesterday
when I woke up I was sure my hands had been cut off since my wrist
pain was incredible. I am wondering when others started to
experience "herxing" and if you would be willing to share some
info. Yesterday my body kept trying to sleep but I have 3 kids to
take care of. When my husband got home from work I told him "I have
to sleep now" and fell asleep almost immediately for 3 hours! This
is not like me. I NEVER sleep during the day and usually get by on
no more than 5 hours a night. Fatigue is not listed as a side
effect (of Mino)so I wonder if this is due to herxing? Any
experience is appreciated as I am still very new to this. Thanks,
Maggy
Achim,
I know of two ways that someone can find an AP doctor, using two websites:
1) American College for the Advancement in Medicine www.acam.org
There is a referral section. From the home page, go to "Public" / "Find a
Doctor". Enter your zip code, city, or state.
2) International Academy of Compounding Pharmacists (IACP) www.iacprx.org
There is a referral section. From the home page, go to "Referral Service".
Find the compounding pharmacist nearest you, and ask them who they'd recommend
for the condition that you have, or the protocol that you want to use.
~Jeff
Dear rheumatic listers,
Denise wants you to read this article from Medical News Today:
************************************************************
Tylenol May Cause Serious Liver Damage
If you take Tylenol for four days as directed you may be at risk of liver
damage, says a new study...
To read the full article, please go to:
http://www.medicalnewstoday.com/medicalnews.php?newsid=46607
************************************************************
Hi Maureen, You are in luck. Dr. Trentham, at Beth Israel Deaconess Hospital on
the Harvard Campus is Chief of Rheumatology and specializes in Scleroderma. I
live in NYC and travel to Boston every 6 months for my Minocin prescription and
check -up. I have scleroderma & RA. Further, he will work with your own doc if
your doc is willing to go along with the protocol. I have been on Minocin since
December and I am a new person. Last year I hurt so bad that I couldn't roll
over in bed. Tonight I just got back from a week's vacation in Montreal where I
attended the Jazz festival and visited some friends. Look up this doc, you will
not be sorry. Keep us updated. We are all on the same journey. Good Luck,
Dolores
Ethel, you had sent me detailed and specific instructions re the coffee enemas.
We do them faithfully...they really have helped keep my liver enzymes
normal...my DRs are amazed..I posted this earlier in regards to a liver enzyme
issue...and now have received several private requests for info...
Could you post the coffee enema instructions here again for all that are
interested? Thanks much...
Debbie
Hi group,
I have no knowledge of this - can anyone please help Jacquie?
Chris.
Begin forwarded message:
Debbie Gibson has requested I post the instructions for coffee enemas. There
are any number of places on the net where you can get such instructions. The
one I have used is from Sherry Rodgers, M.D.'s book "Wellness Against All Odds".
It can also be found in her book "Detoxify or Die".
COFFEE ENEMAS - to detoxify the liver. You will need the following materials
-
1. An enema bag, preferably one of clear plastic that you can see through
(www.needs.com)
2. A special soft French catheter to fit over the hard plastic tip of the enema
bag.
If you do get this extra catheter tip, be sure to cut off the bottom two inches
of the enema bag's hard, plastic tip with scissors before attaching the soft red
rubber catheter tip. Otherwise the soft catheter will cover only the end hole
at the very tip, and coffee will run out the second hole that is on the side
just above the tip.
3. A large stainless steel cooking pot.
4. Organic coffee or Folgers (red can) fully caffeinated, drip grind coffee.
5. A Pyrex one quart measuring cup with handle and pour spout.
6. Unsulfured molasses, and
7. Chemically less contaminated water; definitely do not use city tap water.
If you must use tap water, boil off the chlorine for 10 minutes.
Procedure for making the enema - Put 1 quart of clean water in a pan and bring
it to a boil. Add 2 flat tablespoons of coffee (or the amount of coffee
prescribed for you). Let it continue to boil for five minutes, then turn the
stove off leaving the pan on the hot burner. Add one tablespoon of unsulfured
molasses.
Allow it to cool down to a very comfortable, tepid temperature. Test with your
finger. It should be the same temperature as a baby's bottle. It is better to
have it too cold than too warm.
Next, carry your pan or pot and the Pyrex measuring cup into the bathroom and
lay on an old towel on the floor. (If your bathroom floor is carpeted, lay a
piece of plastic sheeting under the towel.) If you don't use an old towel, you
will shortly have many old towels since coffee stains permanently. Use another
bunch of towels, if you want, as a pillow and bring along your Bible (says Dr.
Sherry Rodgers) or some other appropriate reading material. Pour the coffee
from the pan into the measuring cup without getting the coffee grounds in the
cup. Put your enema bag in the sink with the catheter clamp closed.
Next pour the coffee from the measuring cup into the enema bag. Loosen the
clamp to allow the coffee to run out to the end of the catheter tip and re-clamp
the bag when all the air has been removed from the enema tubing. Use a coat
hanger to hang the enema bag at waist level. A door knob or towel rack is
appropriate. Do not hang it high, as on a shower head, because it will be too
forceful. It should flow very gently into the distal sigmoid colon only. It is
not a high enema or colonic. It should only go into the distal rectum.
Lie down on the floor and gently insert the catheter. If you need lubrication,
food grade vegetable oil such as olive oil would be fine. Avoid petroleum based
jelly or Vaseline. Gently insert the tube into the rectum a few inches and then
release the clamp and let the first ½ of the quart (2 cups maximum) of coffee
flow in. Clamp the tubing off as soon as there is the slightest amount of
discomfort or fullness. Some prefer to roll to the right side, then the left
and then back to the right and then left again, staying a few minutes on each
side, and then lie flat and gently massage the stomach.
Try to retain the enema for 10 minutes. Sometimes there will be an immediate
urgency to get rid of it and that is fine. It helps to clean the stool out of
the colon so that the next time around you can hold more of the enema. Never
force yourself to retain it if you feel that you can't. When you have clamped
the tubing, remove the catheter tip and void when you have to. After you have
emptied the bowel, proceed with the remaining ½ quart and likewise hold that for
10 minutes, if able, then void.
The goal is to have two enemas, not exceeding ½ a quart (2 cups) each, that you
are able to hold for 10 minutes each. Usually 2 or 3 times will use up all of
the enema, but that is not your goal. The goal is to hold it for 10 minutes.
During that time you will often feel or hear a gurgling or squirting out of the
liquid up under the right ribs. That may be your gallbladder discharging it's
load into the bowel.
When you have finished your session, rinse out the bag and hang it up to dry.
Periodically run boiling water, peroxide or other comparable anti-microbial
material through the empty bag to discourage mold growth when it is not in use.
If you feel 'wired" or hyper, or have palpitations or irregular heartbeats after
a coffee enema, you should reduce the amount of coffee - usually by half - for a
few days or weeks. Or consider that you really need organic coffee.
Usually you will hear or feel a squirting out and emptying of the bile duct.
This occurs under the right rib cage, or sometimes more closely to the midline.
If you hear or feel the release of the liver on the first or second enema, 2 is
all you need. You can save the rest for the next time. If after a week you
have never heard or felt the gall bladder release, you should consider making
the coffee stronger, going up by ½ TBS increments per quart, not exceeding 2 TBS
per cup. Or you may need a slightly larger volume, such as 3 cups at a time.
Sometimes 3 enemas (2 cups or less) rather than two at a session are more
beneficial.
Always discontinue the enemas if there is any adverse reaction whatsoever and
discuss it with your doctor.
According to Dr. Rogers, people with serious toxic conditions such as end-stage
cancer often need 6 to 10 coffee enemas a day, but the higher the frequency, the
closer should be the medical supervision - especially of nutrient levels.
TIP: Rinse stained towels in washing machine immediately and then soak in hot
water and Oxy-Clean for several hours. Wash in hot water.
Ethel
I thought this article might be of interest.
Linda
http://eftcommunity.emofree.com/blogs/eft_blog/default.aspx
EFT Blog
a.. What REALLY causes disease?
I'm puzzled.
I was looking on prominent medical websites for the causes of various
diseases and was mystified at what I found.
Take Rheumatoid Arthritis, for example. Below is what WebMD.com gave as
the cause of this crippling disease. After reading it I didn't know whether to
giggle or gag. That's because they took two paragraphs of wobble words to say
they don't know.
"The exact cause of rheumatoid arthritis is unknown, but it is thought
to be due to a combination of genetic, environmental and hormonal factors. With
rheumatoid arthritis, something seems to trigger the immune system to attack the
joints and sometimes other organs. Some theories suggest that a virus or
bacteria may alter the immune system, causing it to attack the joints.
Research hasn't been able to determine exactly what role genetics
plays in rheumatoid arthritis. However, some people do seem to have a genetic or
inherited factor that increases their chance of developing rheumatoid
arthritis."
I count many physicians as my personal friends. They are a dedicated
group and you would think medical science would give them a bit more to work
with than various versions of "We don't know."
Then I randomly looked up 3 other diseases and this is what I found...
a.. "There is no known cure or way to prevent Parkinson's disease."
b.. "The cause of Ulcerative Colitis is unknown."
c.. "Doctors still don't understand what causes Multiple Sclerosis."
What puzzled me was that nowhere in my search was there any mention of
such common sense causes as poor nutrition, lifestyle choices and unresolved
negative emotions. They're not even given honorable mention.
How strange!
It is well known, for example, that our shifting emotions change the
chemistry in our bodies (often dramatically) and thus affect our immune systems.
Along these lines, here is a quote from the health section of womensmedia.com...
Scientific evidence has shown that by compromising immune function
emotions can:
a.. speed the metastasis of cancer
b.. increase vulnerability to viral infections, including common
colds and flu
c.. exacerbate plaque formation in arteries, leading to
atherosclerosis, blood clotting and heart attack
d.. accelerate the onset and course of diabetes
e.. worsen or trigger an asthma attack
f.. lead to ulceration of the gastrointestinal tract
g.. damage memory
Think about it! Our thoughts and emotions are constantly showing up in
our physical bodies. Doesn't your heart start pounding or your blood pressure
rise as a result of anger, fear or trauma? Doesn't your face flush when you are
embarrassed? Doesn't your body change under sexual arousal?
Indeed, our emotions are persistently impacting our bodies. This goes
on around the clock and I have yet to meet a physician or, for that matter, an
everyday citizen who doesn't recognize this.
It should be no stretch, then, to include long held trauma, anger and
fear as leading causes of disease. Anyone who has been collapsing emotional
issues with EFT has surely seen glowing evidence of this. Have you not watched
headaches, pain, numbness and countless other symptoms disappear as you use EFT
to help resolve unhealthy emotions?
This emotional link to disease is clearly illustrated by Caroline
Higgins, a Rheumatoid Arthritis sufferer who worked with me on stage over a year
ago. I used only EFT (Emotional Freedom Techniques) and aimed it at her anger
issues. That's all. No medications or other methods were used.
In one session all of her symptoms improved substantially (it's on
film). There were many open minded physicians in the audience that found this
result impressive, even though they had no way to explain it in medical terms.
Caroline continued to work with Pavla Mraz, a dedicated EFT
practitioner, and resolved her emotional issues still further. Here is a note
she wrote me months later...
"The seminar opened up my eyes to the possibility of not only moving
past rheumatoid arthritis but cleaning the events that tend to "stick" causing
unforeseen issues later! It was there I met Pavla Mraz. What an angel! She
took me on as a client and we spend many many hours cleaning out the "problemos"
as we like to call them.
These days, when I wake up, my feet don't ache, my hands can make
sandwiches, comb hair and work on the computer all day without the severe pain
that once was there. I used to automatically hand over jars to someone else who
could open them, but these days I find I can do it myself! I go to the gym very
regularly and continue to gain strength! Aside from a few crooked fingers, no
one would ever guess I had a problem. It's amazing. The rheumatologist said
that this is the best condition he's ever seen me in."
Caroline is not alone in using EFT to address physical diseases. Our
website at www.emofree.com is loaded with examples. Further, our upcoming DVDs
(available August of 2006) show 20+ people with impressive results for such
diseases as Multiple Sclerosis, Cancer, Parkinson's Disease, Cystic Fibrosis,
Chronic Fatigue Syndrome, Multiple Chemical Sensitivities, Ankylosing
Spondylitis, Diabetes, Rheumatoid Arthritis, PTSD, Hepatitis C, Asthma and more.
Interested readers who wish to learn the basics of EFT can do so by
downloading the free EFT Manual.
Cheers, Gary
posted Sunday, July 02, 2006 1:48 PM by Gary | 0 Comments
Filed Under: EFT
this excerpt is from an HSI Baltimore newsletter:
Curing Acid Reflux
Fire Down Below
I have great news for anyone who suffers from heartburn or acid reflux.
HSI Panelist Allan Spreen, M.D., recently sent me an eye-opening article
from the Boston Globe Magazine with an overview of the marketing of the
prescription heartburn drug, Prilosec. Here's a quote from the article:
"That drug stripped misery from the lives of millions and became the
world's best-selling prescription drug - and the number one medication
prescribed for seniors - taking in $6 billion a year. Prilosec is so good, and
patients so attached to it, that doctors jokingly call it 'purple crack.' It's
an expensive habit, about $4 for each daily pill, or $1,500 a year."
Believe me - that's just the tip of the Prilosec iceburg. I'll give you
all the details on the Prilosec story in an upcoming e-Alert. Today, however, I
have something far more practical. After reading the Globe article, Dr. Spreen
sent me an e-mail, sharing the details of a natural therapy he's often
recommended to successfully treat heartburn - a welcome alternative to Prilosec
and other heartburn medications. Here's Dr. Spreen...
Kicking out the purple
This is so sorry an issue that it gives me reflux. I can't tell you how
many times I've stopped 'heartburn,' 'reflux,' 'acid indigestion,'
whatever...now it's called 'GERD' [GastroEsophageal Reflux Disease] to make it
really official! If everyone would just give me $1500/year to stop it, I'll pay
for the supplements myself and retire a VERY wealthy man with what's left (and
improve the patient's digestion at the same time).
The solution is ridiculously simple (and cheap). Using readily available
acidophilus and digestive enzymes I stop over 2/3 of all cases. The more
difficult cases (that may include overt ulcers, etc.) may involve a more
aggressive approach, but omitting really serious GI illness the results are
nearly always extremely positive.
'Reflux' (or any of the other scary sounding names) is nothing more than
acid slipping past the junction of the stomach and esophagus. The stomach is
designed for it, the esophagus is not...hence a trap door (sphincter) at the
intersection (called the GE, or GastroEsophageal junction) set in place to keep
the two areas separated.
Acid essentials
People act like (from propaganda on TV) stomach acid is some kind of
mistake on mother nature's part. How many times in my practice have I had to
repeat that ACID IS SUPPOSED TO BE DOWN THERE...WE NEED IT!
Here's the kicker: if you 'kill it off' (using antacids, acid blockers,
etc.) the body, in its wisdom, saves the energy required to protect the
esophagus from the stomach's (normally) more acid environment and w