Health Info

This is posted for Canadians on this list who use supplements. Your access to
quality supplements will be stripped away should C51 pass, and if it passes in
Canada, it is scheduled to happen in the U.S. as well. New Zealanders recently
won the battle to prevent their country from harmonizing their dietary
supplement laws with those of Australia. Some of you may remember how people in
Australia were stripped of their access to many supplements overnight.
If this is of concern to you, please get involved - today!.
From: IAHF.COM
Sent: Thursday, June 05, 2008 5:14 AM
Subject: EMERGENCY ALERT: THEY'RE TRYING TO SNEAK C-51 THRU RIGHT NOW!!! WHAT TO
DO- THIS THREATENS USA TOO!!!
IAHF List: This just in. Please take action immediately in Canada, and if you
are American, please continue to donate to IAHF to assist us in our crusade to
kill C-51 or its police state measures will cross the border via FDA's
Trilateral Cooperation Charter, the mechanism via which Codex is being forced on
N.America http://www.nocodexgenocide.com/page/page/3113337.htm
I just attended a lecture on C-51 by attorney Shawn Buckley in Vancouver. I urge
everyone on the IAHF list to get the videotape of that lecture from HANS if you
missed it: http://www.hans.org/events/?event=nhp I'll have a complete report
from that lecture very soon, but had to get this emergency alert out IMMEDIATELY
so you can ACT!!
URGENT EMERGENCY ALERT
Today, June 4th 2008 Bill C-51 was quietly sneaked onto the Order List for the
House of Commons in Ottawa.
It is critical that all of you immediately go to www.healthcanadaabuse.com or
www.republicanpartyofontario.ca and send the E-Protest action letters.
You can also click on the links provided below.
· Harper & Cabinet Ministers
· Standing Committee of Health
· Canadian Senators
· Canadian Members of Parliament
· Conservative MPs
· Liberal MPs
· NDP MPs
· BLOC MPs
· Independent MPs
The current Status for Bill C-51 is here and for C-52 is here.
"THEY" cannot amend Bill C-51 before it is passed at second reading into
committee. If we can stop Bill C-51 now from being passed at second reading,
Bill C-51 will likely die on the Order paper and "THEY know it.
"THEY" must get, in a minority government other party agreement from the
following people in order to pass Bill C-51 or any other Bill on "Division" with
a "Party" vote in order to avoid a row by row individual recorded member vote.
Conservative Party House Leader, Peter Van Loan, VanLoan.P@...
Conservative Whip Jay Hill, Hill.J@...
Conservative Deputy Whip Pierre Lemieux, Lemieux.P@...
Liberal Party Whip Karen Redman Redman.K@...
Liberal House Leader, Ralph Goodale Goodale.R@...
Liberal Deputy House Leader, Lucienne Robillard Robillard.L @parl.gc.ca
NDP House Leader Libby Davies, Davies.L@...
NDP Whip Yvon Godin, Godin@...
Bloc House leader Pierre Paquette Paquette.P@...
Bloc Dep House leader Monique Guay, Guay.M@...
Bloc Whip Michel Guimond Guimond.M@...
Bloc Dep Whip Pauline Picard, Picard.P@...
If any of these are your MPs please call, write and visit ASAP.
To look up your MP please go here.
In a "Division Party Vote" your individual MPs do not read the Bill and / or
even have to be in attendance. This is a travesty of the Rule of British Common
Law and our Democratic Constitutional processes and should be stopped for all
Bills. Bill C-52 was sneaked into committee using this same technique and the
Conservative Party to keep their "FREEDOM OF CHOICE" promises MUST cancel Bills
C-51, C-52 and the Drug Class Natural Health Products Regulations now.
The Canadian Coalition for Health Freedom and supporters, as you may recall has
since 1997 have submitted to Parliament over 500,000 signed petitions which
generally state as follows:
We, the undersigned residents of Canada, draw the attention of the House to the
following:
1. THAT Canadians deserve to have an updated Food & Drugs Act, created by
Parliament today, that is consistent with Canadians' inherent rights of informed
freedom of choice, and access to non-drug medicinal products of their own
choosing, as protected by Sections 1, 2, 7, and 15 of the Charter of Rights;
2. THAT healthy medicinal foods, herbs, spices, dietary supplements, and
other natural health and nutritional products should be properly classified as
foods, and not arbitrarily regulated, and otherwise restricted, as drugs by
Health Canada officials without a clear modern day legislated authority;
3. THAT the weight of modern scientific evidence confirms the mitigation,
and prevention of many diseases, and disorders through the judicious use of low
risk, medicinal foods, herbs, spices, dietary supplements, and other natural
health and nutritional products, as well as their extremely low levels of risk
compared to many synthetic pharmaceutical drugs, and other modern medical
procedures.
4. THEREFORE, your petitioners call upon Parliament to provide Canadians
with greater access to non-drug, preventive and medicinal options, as well as
the information about these options, and to sanction the personal choices of
Canadians, by clarifying the currently vague definitions of "food", and "drug"
in the outdated 1927 / 1952 Food & Drugs Act, and by repealing the outdated
prohibitions against making truthful health claims for the prevention,
treatment, and cure of health challenges with non-drug approaches, by enacting
Bill C -420, an act to amend the Food & Drugs Act.
More than 70% of Canadians now depend on natural products to maintain or enhance
their health because they offer a safer and more effective alternative to
high-risk pharmaceutical drugs. In BIG PHARMA's effort to eradicate their
competition for a monopoly, Bills C-51, C-52 and the Drug Class Natural Health
Products Regulations will "criminalize" Natural Health Products including
vitamins, minerals, herbs, greens drinks, carrot juice and many "Therapeutic"
and "Healthy Foods".
It is very important for you to actively participate now in order to help our
Coalition and its supporters to stop not only the "Division" second reading of
Bill C-51, but also to force immediate cancellation of Bill C-52 and the drug
class Natural Health Product Regulations that has attempted to make your greens
drinks, herbs, vitamins, minerals, carrot juice, etc. into "NEW DRUGS"!
Our Canadian Coalition for Health Freedom believes in the British Rule of Common
Law, the Written and Unwritten Constitution and Canadian Democracy, where to
quote Thomas Jefferson;
"The care of human life and not its destruction is the first and only legitimate
object of good government."
Most Canadians believe that the "CROWN" is ultimately a trust and that the
beneficial ultimate owner / shareholder of the "CROWN" and its assets should be
and is the ordinary men and women of our society.
If you look up " Implied Bill of Rights" and " Rule of Law" you will understand
where our supporters are coming from on these issues. As human beings and small
family enterprises our elected officials should not and can not let big
government and big business put profits before people.
This is politely called " Statism" or not so politely called Fascist Socialism.
For information on the Canadian Coalition for Health Freedom visit
www.canadiancoalitionforhealthfreedom.ca and / or e-mail to
United@..., and / or phone: 613-771-1797
And / or fax to: 613-771-1435
ALSO, utilize information at www.stopc51.com and make sure you get their flyers
into all Health Food Stores, Naturopaths offices, etc and if a Store Refuses to
Help, you MUST boycott them and direct their customers to the nearest stores
that ARE helping with our campaign! Some CHFA member stores are refusing to help
because CHFA is lying to them about the bill which they're only trying to amend
when it MUST be killed!
Your donations to IAHF are helping us do this work. My car was broken into in
Vancouver when I was just there for Shawn Buckley's presentation on C-51.
Someone did a smash and grab on me and broke the quarter panel window with a
hammer. Today I got it replaced at a junkyard. Vancouver is chock full of
crackheads and heroin addicts. Your donations are helping me pay for expensive
Canadian gas ($6. and more per gallon) so I can make the rounds to insure that
Stores are taking action against C-51 and C-52.
If we fail to win this war north of the Border, we're done for in the USA. We've
been blocked from getting congressional oversight on FDA's Trilateral
Cooperation Charter by Pharma PAC donations to members of the Oversight Sub
Committee, so if you want your access to supplements, PLEASE assist me in my
efforts to kill C-51 in Canada- right now its the only way to protect DSHEA in
the USA because they're very actively forcing us into a N.American Union
Dictatorship and we have to SCRAMBLE at this point to protect ourselves!!
IAHF 556 Boundary Bay Rd. Point Roberts WA 98281 USA or via paypal
http://www.iahf.com/index1.html
For Health Freedom, John C. Hammell, President International Advocates for
Health Freedom 556 Boundary Bay Road Point Roberts, WA 98281-8702 USA
http://www.iahf.com jham@... 800-333-2553 N.America 360-945-0352 World

Hi Dolores - great to hear from you. I hope you are doing well on MP.
How is the book coming along - or is that on the back burner while you
are in this phase? BTW re the new Texan doc, have you given details of
him to the folks here? What about to Road Back? Always great to hear
of another doc willing to deal with SD with AP and I know there are a
fair few new SD people who've joined RB recently. Email me with
details if you havent and you dont want to post there. Thanks and take
care. Lynnie

FDA MedWatch- Remicade, Enbrel, Humira and Cimzia- FDA Investigating Tumor
Necrosis Factor Blockers And Cancer Risk In Children And Young Adults
Sent: Wednesday, June 04, 2008 3:55 PM
Subject: FDA MedWatch- Remicade, Enbrel, Humira and Cimzia- FDA Investigating
Tumor Necrosis Factor Blockers And Cancer Risk In Children And Young Adults
FDA issued an Early Communication About an Ongoing Safety Review to inform
healthcare professionals that the Agency is investigating a possible association
between the use of Tumor Necrosis Factor (TNF) blockers and the development of
lymphoma and other cancers in children and young adults. FDA is investigating
approximately 30 reports of cancer in children and young adults. These reports
were submitted to FDA's Adverse Event Reporting System over a ten-year interval,
beginning in 1998 through April 29, 2008. These reports describe cancer
occurring in children and young adults who began taking TNF blockers (along with
other immuno-suppressive medicines such as methotrexate, azathioprine or
6-mercaptopurine), when they were ages 18 or less, to treat juvenile idiopathic
arthritis, Crohn's disease or other diseases. Approximately half of the cancers
were lymphomas, including both Hodgkin's and non-Hodgkin's lymphoma. Long-term
studies are necessary to provide definitive answers about whether TNF blockers
increase the occurrence of cancers in children because cancers may take a long
time to develop and may not be detected in short-term studies. Until the
evaluation is completed, healthcare providers, parents, and caregivers should be
aware of the possible risk of lymphoma and other cancers in children and young
adults when deciding how to best treat these patients.
Read the entire 2008 MedWatch Safety Summary, including a link to the FDA's
Early Communication About n Ongoing Safety Review of Tumor Necrosis Factor (TFF)
Blockers regarding this issue at:
http://www.fda.gov/medwatch/safety/2008/safety08.htm#TNF

This is a message for all Australian APers.
I am trying to update, clean up - and hopefully add to, the list of AP
docs for Australia. What would be really helpful would be to hear from
Aussies on an AP protocol about the doc they see, plus any info about
that doc's approach. Plus, I'd be grateful for details about any AP
docs you might know about, including those who no longer offer AP or
who have retired. If you have any info that might help update this
list, I would really appreciate an email (or a Private Message on Road
Back site). I am hoping to add a line or two to docs' details that may
help others in their search.I will share all details collected.Many
thanks. Lynnie

Im on digest, so i cant block individual emails, they come in as a group. also
if i hit delete I lose all the messages on that digest, I just scroll past, its
just annoying, thats all. kathy

I created this cool friends network and added you to my friends network. Hit-up
now:
http://missy6969.zoomshare.com/files/girlfriend.htm

How often are these chats & is another scheduled?Jean Howard 770-307-1137 (Home)
813-727-4857 (Cell)

Hi how is everybody
Here you can find useful advices , articles , tips and programs to
lose some pounds quickly
http://www.tipsweight-loss.com
We're waiting your comments
Thanks
Regards

We are near Austin, but at this point willing to drive anywhere
because of the effectiveness of the treatment and the steady decline
in our daughters condition. Thank you so much for the reply. :)

Hi Guys,
Dr Norman Swan who runs the Health Report on ABC Radio National here in
Australia has just done a 15 min segment on "Alternaive Treatment for
RA". He interviews a guy who AP is working for, a Dr who prescribes it
here in Australia and a Rheumatologist who gave the classic
Rheumatologist response to this therapy.
Here's the link if you want to listen to the Podcast.
http://www.abc.net.au/rn/healthreport/stories/2008/2260412.htm
You need to slide the bar just before half way as the A2 milk story is
presented first.
Finally the message is out to the masses here in Oz. I've emailed
Norman Swan about the number of clinical trials that have been done on
AP as he kept saying there were no good trials.
Have a great one,
Angela.

Hi everyone! This is my first time posting on this group. My daughter
has had JRA since she was 4. When she was 5 we started seeing Dr. Gabe
Mirkin in Maryland who began treating her with antibiotics. She was on
them for less than 6 months and went into a 2 yr remission. When her
arthritis did come back it was very aggressive and affected many more
joints. We moved to Texas that year so could no longer see Dr.
Mirkin(who is now retired). I was just wondering if anyone else has used
antibiotics and knows doctors in the Central Texas area(or
elsewhere)and what your experience was. Thanks so much!!

**************Get trade secrets for amazing burgers. Watch "Cooking with
Tyler Florence" on AOL Food.
(http://food.aol.com/tyler-florence?video=4&?NCID=aolfod00030000000002)

You all are welcome to join us for a 1 1/2 hour Question and Answer
with an experienced AP doctor tonight. The protocol for the chat is on
the board at www.rheumaticsupport.net. The chat room opens at 8:30pm
eastern time to get your font color and gab and the doctor will log in
at 9pm and go to 10:30pm answering your questions. If you don't have
questions, come just to "listen" and learn! Hope to see you there
tonight. Jan

I stopped the humira about the same time i started the MINO. I will admit the
humira seemed to help, but the shots burned worse each time I had one. as for
sick, I am senisitve to meds anyway. I had a bad "herx reaction" as well as
side effects from the mino cause they started me right out on 200mg and it was
way too much for me at once. I had to stop and start again at only 50mg and
work my way up. each time I got to 200, Id have side effects again, so Im just
staying at 100 and Im doing fine. (herx was sore throat, sinus drainage,
swollen glands, sore neck, headache, exhausted, sleepy) I took benedryl and went
to bed! (mino causes me to have an ear ache, dizzy (from ear) and motion
sickness..and I drive a bus for a living so i couldnt have motion sickness!)
Kathy

Mr Perfect says:
My reaction was to a standard "dose pack" used to knock down the
serious effects of arthritis (4 capsules, then three, then two then
one. I do not remember the dosage.

This man is referring to the Godzilla we bought from V

MP. So, my search goes on. <<<
Hi Dolores,
You may have already tried this, but if you go to the MP site and, after
logging in, click on the "members" button at the top right....then click on a
member's state...in this case, "Texas," then all the members residing in Texas
will pop up...there are about 4 pages of members listed for Texas. It may take
some work, but you could email the ones closest to where you're living and get
MP doc referrals that way. An old timer on the RBF BB mentioned that this was
probably the best way to find an MP doc by state. If emails aren't listed by
the member in their profile, there is also the private message function to use
by clicking on their name.
Good luck in your searches!
Peace, Maz

Hi Margo
If you haven't already used the search facility on this board and at
the Roadback Foundation, there are a lot of stories and emails from
people who've been successful with treating lupus with antibiotics.
Some of them seem to say start very slowly (25 or 50 mg mino 3 times
a week) and some have used doxycycline. Here's the address of the
roadback bulletin board:
http://www.rbfbb.org/
In the General Discussion area there is a subject which will take you
to many many emails from people as well:
OLD RBF Bulletin Board Archives & Update
Just enter "lupus" in the little search window at the top of the new
board or the old board. It will take a while to read all the emails.
I quickly just looked for those with lupus in the subject matter.
Good luck,
Ros

Hi group,
I'm 44 yo and very recently (last month or so) I've started to have significant
joint pain
which I have not had before. It's in my hands, wrists, elbows, sometimes
knees,
sometimes ankles. My elbows in particular have a burning, hot achiness to them.
I've read "The New Arthritis Breakthrough", and also "Solving the Puzzling
Problem of
Arthritis". I have "Overcoming Arthritis" on the way for my next read.
I was able to convince an MD in the Chicago area to test for mycoplasma, strep,
and
chlamydia through TARCI (The Arthritis Research Center). It'll be several weeks
before we
get the results.
This MD seems only somewhat familiar with stealth infections as a cause of
arthritis, and
only somewhat familiar with the antibiotic protocol. He'd like me to do some
more
research and we'll talk when the test results come back.
On one hand, it's good to have someone willing to work with me, on the other
hand, my
confidence is not too high---meaning, it would be nice to feel like I'm in good
hands and
working with someone who is really on the ball and familiar with the antibiotic
protocol.
I wanted to check out Susan Busse in Hoffman Estates, but it appears she has
closed or
moved her practice.
Has anyone had experience with Brian Wu in Crystal Lake? You can email me
off-list.
Thank you,
Michelle

Hi,
I am a 50 yr old female, have had psoriasis since '74,
psoriatic arthritis since '79 (which was first
diagnosed as rheumatoid and has gone back and forth
over the years depending upon the doctor),
thryroiditis and partial thyroidectomy in '86, and
then got sick in '02 with Lupus. My current rheumy
refers to it as Lupus like symptoms, but it was full
blown anemia, pleural effusion 5 weeks in the hospital
with every test conceivable (a least it felt that
way), 5 months off work and a diagnosis of Lupus.
Although I have so much going on with my autoimmune
system I think there's something underlying and wonder
about the antibiotic therapy.
I have been on prednisone since December '01 (before
the lupus dx) and am now down to 5 mg.
I am wondering about antibiotics but can't find anyone
in Toronto. I asked my last rheumy, who was on the
fence until I had the Lupus fiasco and then he said
NO! Have mentioned antibiotics in passing to my
current rheumy but she does not seem open either.
Does anyone have experience with antibiotics and
Lupus, PsA, etc. I'd be interested to hear both
negative and positive experiences and about Drs using
the therapy in Toronto.
Thanks,
Margo

DGNews
EMEA Recommends Changes in Product Information for Protelos/Osseor
Due to Risk of Severe Hypersensitivity Reactions
LONDON, U.K. -- November 16, 2007 -- The European Medicines Agency
(EMEA) agrees on the inclusion of warnings concerning the risk of
severe hypersensitivity reactions in the prescribing and patient
information for Protelos/Osseor, as an urgent measure.
These products, which contain strontium ranelate, were approved in
the European Union in September 2004 for the treatment of
postmenopausal osteoporosis to reduce the risk of vertebral and hip
fractures.
Up to now, 16 cases of drug rash with eosinophilia and systemic
symptoms (DRESS) in patients treated with Protelos/Osseor, two of
which were fatal, have been reported to the EMEA, following a total
of around 570,000 patient-years of worldwide exposure. DRESS is a
serious and life-threatening condition. The reported serious
reactions started within 3 to 6 weeks of the initiation of the
treatment, with skin rash, accompanied by a fever, swollen glands,
increased numbers of white cells in the blood and effects on the
liver, kidneys and lung.
Having assessed the newly available data, the Agency's Committee for
Medicinal Products for Human Use (CHMP) has agreed that the product
information be provisionally updated in a rapid procedure to include
warnings on severe hypersensitivity syndromes, including DRESS and
Stevens Johnson-Syndrome, in the prescribing and patient information,
as an urgent measure.
Patients are advised to stop treatment with Protelos/Osseor when a
rash occurs and to seek medical advice. Once the treatment has been
stopped, Protelos/Osseor should not be re-introduced.
As for all medicinal products marketed in the European Union, the
CHMP will continue to monitor Protelos/Osseor, and take appropriate
actions if further concerns arise.
Notes:
1. The European Public Assessment Report (EPAR) for Protelos/Osseor
can be found here:
http://www.emea.europa.eu/humandocs/Humans/EPAR/protelos/protelos.htm
2. The revised product information can be found here.
3. A separate question-and-answer document can be found here:
http://www.emea.europa.eu/humandocs/PDFs/EPAR/protelos/Protelos_Q&A_53
46
1307en.pdf
4. These changes to the product information have been provisionally
introduced via an 'urgent safety restriction' procedure. These
changes will be formally endorsed by the CHMP via a scientific
opinion at the December plenary meeting.
SOURCE: European Medicines Agency

FLORIDA

Paul J. Borgmeier, Jr., M.D. RHU 1976 Questionable
1600 36th Street Ste. C or is it 1800 43rd Ave,
Vero Beach, FL 32960-4851
P: 561-569-5773

Elizabeth M. Chang, M.D., P.A. IM & RHU 1971
923 Del Prado Blvd. - Suite 105
Cape Coral, FL 33990 (East Palatka, FL )
P: 941-772-2422

Dr. Harold W. Clark Ph.D., - research/retired
Mycoplasma Research Institute,
P.O. Box 640040,
Beverly Hills, FL 34464
P: 850-746-3234
email hwcmri@...

Jay G. Rhodes not in AMA or phone directories
5642 W. Atlantic Blvd.
Margate, FL 33063
P: 305-974-3535

Harold G. Robinson, M.D. (FP) 1963
&S. Todd Robinson (son), (IV and oral) 1991
4406 S. Florida Ave. Suite 27
Lakeland, FL 33803
P: 941-646-5088
F: 941-646-7534

David H. Sikes, M.D. - RHU 1980
Florida Medical Clinic
38135 Market Square
Zephrhills, FL 33540-2505
P: 813-782-1234

Daniel Mayer, DO ???????
Joseph Di Stefano, NC
Medical Center for Preventative & Nutritional Medicine, Inc.
8085 38th Ave. No.
St. Petersburg, FL 33710
P: 727-572-6745
P: 727-344-3134

Also 4543 S. Manhattan Ave.
Suite 103
Tampa, FL 33611
P: 813-831-8888
F: 813-532-9621

Lois Summerville
Crystal Lake Chiropractic Clinic
Lake St. Mary, FL specializes in homeopathy

William W. Ginsberg, M.D. RHU & IM -oral only
Mayo Clinic Jacksonville
4600 San Pablo Road
Jacksonville, FL 32224
P: 904-953-2101
F: 904-953-2005

Neil Ahner, MD - takes referrals oral and IV (alternative medicine)
Ahner Medical Center
705 North Federal Highway
Stuart, FL 34994(also Vero Beach, Melbourne & Palm Beach
Gardens)
P: 800-353-3247
P: 772-692-9200 - Stuart location
www.chelationcenters.com/ahner.html

Albert F. Robbins, DO (Environmental medicine) takes referrals
400 S Dixie Highway Suite 210
Boco Raton, FL 33432-6023
P: 561-395-3282
P: 954-421-1929 check these numbers
F: 561-395-3304

Cristina M. Babiak, MD (IM) oral & IV (H.Roth)
1872 South Tamiami Trail Suite B
Venice, FL 34293
P: 941-493-2878

John H. Gridley, Jr., MD (RHU)
689 Ninth Street North
Naples, FL 34102
941-262-6550

Hello everyone. I'm looking for a Doctor in Florida that uses AP. I
have seen Dr. T in Boston and he has put me on Minocycline...but he
wants me to have a local contact for him to be able to consult with
and for me to have local care. Plus I'm having issues with Minocycline
(dizziness) that he wants to address with a local rheumatologist. I'm
seeing my rheumy on Thursday...but he is against AP...so I need
someone who is "for AP" who can support my efforts. I live in Fort
Pierce, FL which is close to Vero Beach, Melbourne, Port. St. Lucie,
Jensen, Stuart, Palm Beach, West Palm Beach etc... Please help. I am
desperate. My email whaleharbor@...

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Hi i have a daughter 8years old and she has juvenile RA from 2years.
We try diferent therapies but at the moment we do homeopathy.
Do you know if it can help?

Gail,
Just reading through your symptoms piqued my attention, because migrating
arthraligias and myalgias, photosensitivity and heightened hypersensitivity, in
general, are very akin to some of the mryiad symptoms that many Lyme patients
report.
Of course, most of us with some type of rheumatoid disease have heightened
hypersensitivity reactions we may not have experienced before and it's easy to
jump to the conclusion of Lyme, but the migrating pains are pretty typical of
it. In fact, in a Lyme conference video I watched where a well-known LLMD was
speaking (Dr H in NY - see link below), he said that when migrating pain
presents, it is pretty much the only diagnosis to consider as no other disease
process presents like this. I was somewhat surprised to hear this, because I had
understood that palindromic RA did actually present as migrating pain. Made me
think that perhaps many "idiopathic" diseases of unknown etiology could well be
undiagnosed Lyme quite apart from the ones it is known to mimic...or at the
very least be a part of the overall pathogen load. In fact, I spoke with my
LLMD recently about the possibility of there being a connection with scleroderma
and Lyme and he said, "Absolutely, yes!" I've found morphea studies where skin
biopsies actually showed spirochetes in the samples.
Anyway....just thought to pass this along just in case it may be relevant. If
you live in the NE, the chances of Lyme are heightened and, even if not a
recent infection, it is known that Lyme can remain latent...dormant...for many
years before something comes along to trigger it manifesting in
immuno-compromised folk.
Here are the lyme conference videos, if you're interested in watching some of
the clips....some very well known doctors and researchers (Lida Mattman,
Trevor Marshall, Nicholson, etc) to listen to:
http://www.ctlymedisease.org/videoclips.htm
Do hope you find some answers soon!
Peace, Maz

I feel the same way - I asked about IV clindymyacin, and he did not feel it
was necessary, and even said he believed it was passay (spelling).
He is supposed to be an excellent Dr. and comes highly recommended for
Scleroderma, so it leaves me wondering if I should seek out someone else.
I am glad, however, not for your symptoms, but that you too had the same, as
he leads me to believe some of the things I am telling and showing him are not
as he says "disease" related.
May I ask how you are doing now, and if you are in remission. Did you take
any other over the counter herbal supplements, vitamins or prescription drugs
in addition to the minocycline and iv antibiotics?
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Just returned from Boston for a second visit to my doctor. I have diffuse
systemic scleroderma. Unlike my first visit, which lasted about 45 minutes, and
was open to a lot of questions and answers, this one was anything but, and
lasted about 5 minutes. I felt so rushed and stifled, and could only get one of
my 10 - 12 questions and concerns out before having the door flung open and
my hand shook and escorted to the receptionist for my next appt.
Anyway, that having been said, I am experiencing so much pain, usually in the
shin area, and neck area, though it travels, thats for sure. I also have an
area to the base of my neck near my collar bone that has swollen and gives me
trouble for the last week or so. In addition, my eyes are so very light
sensitive, I am having much trouble walking, especially making turns, very
unsteady, gums and teeth sensitive, sense of smell seems unbelievable hightened,
and I
also have sjogrens, so of course the eternal dry mouth, eyes, etc.
Do you believe that all these above symptoms are either scleroderma or
sjogrens related, or do you believe there is yet other things going on. My
insurance is refusing to pay anything, saying pre-existing condition, even
though it
took 10 months to diagnose, my insurance had not kicked in until Jan. 1st of
this year, and frankly I am out of cash to see mega doctors.
Any ideas, thoughts, suggestions would be so appreciated. I'm going through
an incredibly rough time, with little answers of these branch off issues.
Thanks so much. Gail
The only thing I am taking at this time besides armour thyroid for my
underactive thyroid, is 100 mg. minocycline 2X daily.
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Plaquenil has worked well for me. My rheumatologist put me on it
almost immediately along with celebrex. As I started AP I have
started to wean off the plaquenil -- I started at 400 mg daily, went
down to 300, and now I am at 200mg -- just one pill daily. I am a
little scared to stop it completely.
It's a pretty benign medication. My husband is an ophthomologist,
and he has seen many RA/plaquenil patients over the years, and none
who have actually developed any of the eye complications. He has
seen some people for whom the plaquenil stopped working and they had
to move on to stronger medications.
I like my regimen of mino MWF and 1 plaq daily. Maybe eventually I
will get up the courage to stop the plaquenil -- but I am feeling
really good right now -- gut is okay, joints are doing pretty well,
even fatigue is better -- I believe 'let sleeping dogs lie' -- and
my rheumy really likes this medicine. So .... I will wait a few more
months before contemplating any more changes.
Try it.
Bonnie Lou

If you don't mind, I'm going to break your question down to smaller
parts, so that I don't get confused answering it.
I had to look up azithromycin
This is what I found:
Take azithromycin on an empty stomach 1 hour before or 2 hours after
meals. Do not take azithromycin at the same time as taking an antacid
that contains aluminum or magnesium. This includes Rolaids, Maalox,
Mylanta, Milk of Magnesia, Pepcid Complete, and others. These
antacids can make azithromycin less effective when taken at the same
time.
So it looks like this antibiotic does not interact with Iron or
calcium, only alumium and magnesium.
Since your doctor has you taking it specifically AT lunch time, my
guess is that your dose has been increased to allow for the reduced
absorbtion rate.
According to the Protocol, Minocin can be taken with meals, so I
haven't checked much on that. Only on the supplements. And just for
fun, I've found 1 source that says not 1 hour before or after,
another that uses 2 hours, and another that uses 3 hours between the
antibiotic and necessary supplements. So if you discuss it with your
pharmacist and your doctor and you really need the supplement. Follow
the one that lets you absorb the most of the supplement and the
antibiotic. Probably the 3 hours, or if you are taking the antibiotic
on alternate days ... can you alternate the supplement?
Also, I would like to thank you, because of your question I have
discovered something I overlooked. Both Doxy and Mino have a few
brands formulated to reduce, but not eliminate, the effect with
Diary, if one specifically asks their pharmacists for them.
These are the notes I took off the web about Minocin (minocycline):
Avoid: Reduced drug absorption/bioavailabilityAvoid these
supplements when taking this medication since the supplement may
decrease the absorption and/or activity of the medication in the body.
Calcium
Iron
Magnesium
Zinc
Avoid: Adverse interactionAvoid these supplements when taking this
medication because taking them together may cause undesirable or
dangerous results.
Vitamin A
Interactions with Foods and Other Compounds
Food
Food slightly reduces blood levels of minocycline, but the effect is
not significant. Unlike other tetracyclines, minocycline may be taken
with or without food.
Interactions with Dietary Supplements
Calcium, Iron, Magnesium, Zinc
Taking calcium, iron, magnesium, or zinc at the same time as
minocycline can decrease the absorption of both the drug and the
mineral. Therefore, calcium, iron, magnesium, or zinc supplements, if
used, should be taken an hour before or after the drug.
Vitamin C
Tooth discoloration is a side effect of minocycline observed
primarily in young children, but it may occur in adults as well.
Vitamin C supplementation may prevent staining in adults taking
minocycline.
Do not take iron supplements, multivitamins, calcium supplements,
antacids, or laxatives within 2 hours before or after taking
minocycline. These products can make minocycline less effective.
You may take this medication with or without food. Do not take the
medication with milk or other dairy products, unless your doctor has
told you to. Dairy products can make it harder for your body to
absorb the medicine. Certain brands of minocycline may not have
restrictions about taking them with dairy products. If your doctor
has instructed you to take minocycline with milk, tell your
pharmacist that you need a brand of minocycline that can be taken
with milk.
What other drugs will affect Minocin (minocycline)?
Before taking minocycline, tell your doctor if you are taking any of
the following drugs:
cholesterol-lowering medications such as cholestyramine (Prevalite,
Questran) or colestipol (Colestid);
isotretinoin (Accutane);
tretinoin (Renova, Retin-A, Vesanoid);
an antacid such as Tums, Rolaids, Milk of Magnesia, Maalox, and
others;
a product that contains bismuth subsalicylate such as Pepto-Bismol;
minerals such as iron, zinc, calcium, magnesium, and over-the-counter
vitamin and mineral supplements;
a blood thinner such as warfarin (Coumadin); or
a penicillin antibiotic such as amoxicillin (Amoxil, Trimox, others),
penicillin (BeePen-VK, Pen-Vee K, Veetids, others), dicloxacillin
(Dynapen), carbenicillin (Geocillin), oxacillin (Bactocill), and
others.
This list is not complete and there may be other drugs that can
interact with minocycline. Tell your doctor about all the
prescription and over-the-counter medications you use. This includes
vitamins, minerals, herbal products, and drugs prescribed by other
doctors. Do not start using a new medication without telling your
doctor.
Where can I get more information?
Your pharmacist can provide more information about minocycline.
If treatment with this medicine is continued for longer than 6
months, then your doctor should ask to see you regularly, usually
every three months, to monitor for possible side effects on the liver
or a condition called systemic lupus erythmatosus.
The following medicines may reduce the absorption of minocycline from
the gut, which may make it less effective. If you are taking
medicines containing any of the following ingredients they should be
taken at least three hours before or after your minocycline dose:
- antacids (for heartburn and indigestion) or vitamins that contain
aluminium, bismuth, calcium, magnesium or iron
- quinapril (brand name Accupro, because these capsules also contain
magnesium carbonate)
- iron tablets, eg ferrous sulphate (the absorption of iron tablets
from the gut is also reduced by the minocycline)
- zinc salts (the absorption of zinc salts from the gut is also
reduced by the minocycline)
- kaolin
- tripotassium dicitratobismuthate (TDB).
If minocycline is taken with acitretin, isotretinoin or tretinoin
there may be an increased risk of developing raised pressure within
the skull (benign intracranial hypertension), and minocycline should
be avoided in people taking these medicines.
Minocycline may increase the blood thinning effects of anticoagulants
such as warfarin.
There may be an increased risk of side effects on the kidneys if
minocycline is taken with diuretic medicines, particularly in people
with decreased kidney function.
Minocycline may decrease the effectiveness of penicillin antibiotics
in the treatment of serious infections such as meningitis. It is
recommended that minocycline should not be used with penicillins.
The following medicines may reduce the absorption of minocycline from
the gut, which may make it less effective. If you are taking
medicines containing any of the following ingredients they should be
taken at least three hours before or after your minocycline dose:
aluminium salts
antacids for heartburn and indigestion containing aluminium, bismuth,
calcium or magnesium
calcium supplements
iron preparations, eg ferrous sulphate (minocycline also reduces the
absorption of iron from the gut)
kaolin
magnesium salts
quinapril tablets that contain magnesium carbonate, eg Accupro brand
ranitidine bismuth citrate
strontium ranelate
sucralfate
tripotassium dicitrato-bismuthate
zinc salts (minocycline also reduces the absorption of zinc from the
gut).
Doxycycline:
Take doxycycline with a full glass of water (8 ounces).
You may take this medication with or without food. Do not take the
medication with milk or other dairy products, unless your doctor has
told you to. Dairy products can make it harder for your body to
absorb the medicine. Certain brands of doxycycline may not have
restrictions about taking them with dairy products. If your doctor
has instructed you to take doxycycline with milk, tell your
pharmacist that you need a brand of doxycycline that can be taken
with milk.
Do not take iron supplements, multivitamins, calcium supplements,
antacids, or laxatives within 2 hours before or after taking
doxycycline.
Do not lie down for 30 minutes after taking this medication.
What other drugs will affect doxycycline?
Before taking doxycycline, tell your doctor if you are taking any of
the following drugs:
cholesterol-lowering medications such as cholestyramine (Prevalite,
Questran) or colestipol (Colestid);
isotretinoin (Accutane);
tretinoin (Renova, Retin-A, Vesanoid);
an antacid such as Tums, Rolaids, Milk of Magnesia, Maalox, and
others;
a product that contains bismuth subsalicylate such as Pepto-Bismol;
minerals such as iron, zinc, calcium, magnesium, and over-the-counter
vitamin and mineral supplements;
a blood thinner such as warfarin (Coumadin); or
a penicillin antibiotic such as amoxicillin (Amoxil, Trimox, others),
penicillin (BeePen-VK, Pen-Vee K, Veetids, others), dicloxacillin
(Dynapen), carbenicillin (Geocillin), oxacillin (Bactocill), and
others.
This list is not complete and there may be other drugs that can
interact with doxycycline. Tell your doctor about all the
prescription and over-the-counter medications you use. This includes
vitamins, minerals, herbal products, and drugs prescribed by other
doctors. Do not start using a new medication without telling your
doctor.
Your pharmacist can provide more information about doxycycline.

. "One major reason that I've noticed for the tetracycline antibiotics
not to work for some people, is that they either aren't aware, or
haven't paid attention to the warning NOT to consume calcium, Iron,
magnesium or any other metal or mineral containing food, vitamin, or
supplement while taking it. No milk, cheese, butter, antacids or
other. It bonds with the tetracycline antibiotic and can make it
worthless. (doxy and mino are both of the tectracycline family)
Anyway, as I said, I'm just a newbie to all this and everything I
know is based on research and Mr Perfect. So, there may be lots that
I still don't understand yet. But I don't think anything I've
mentioned would hurt, and it might help.
Blessings"

Johns Hopkins Health Alerts:
Arthritis
The Estrogen-Osteoarthritis Connection
May is National Arthritis Awareness Month. It is hoped that this
observance will bring more awareness of this chronic and painful disease, which
affects approximtely 70 million men, women, and children.
Here at Johns Hopkins Health Alerts we are dedicated to providing timely
advice and information about osteoarthritis, rheumatoid arthritis, bursitis,
gout, lupus, fibromyalgia, and other arthritis-related conditions. This week's
Arthritis Health Alert looks at osteoarthritis and asks: Why do so many
middle-aged women develop osteoarthritis? Scientists believe that declining
estrogen levels may play a role.
www.johnshopkinshealthalerts.com | Johns Hopkins Health Bookstore | Email
this to a friend
The Estrogen-Osteoarthritis Connection
Why do so many middle-aged women develop osteoarthritis? Scientists
believe that declining estrogen levels may play a role.
Osteoarthritis is often called a wear-and-tear disease because it
develops in joints after many years of use. Aging increases the risk of
developing osteoarthritis, but it's not the sole cause. Scientists aren't sure
exactly what causes the condition, but several factors play a role in its
development. These include genetic predisposition, obesity, prior joint
injuries, wear and tear on the joints due to repeated overuse or sports-related
activities, muscle weakness, and nerve injury.
Now a study reported in the journal Arthritis and Rheumatism (Volume 54,
page 2481) suggests that low estrogen levels are linked to osteoarthritis of the
knee in middle-aged women.
Following up on findings from animal studies, researchers from the
University of Michigan measured the estrogen levels of more than 800
premenopausal and perimenopausal women. Based on these results, they ranked the
study participants into three groups according to their estrogen levels. The
women had yearly x-rays of both knees and answered questions about knee pain,
their general health, and various lifestyle factors.
After taking into account osteoarthritis risk factors such as body mass
index, the researchers found that women with the lowest estrogen levels were
nearly twice as likely to develop osteoarthritis over the next three years as
were those with higher levels.
These findings may help explain why signs of osteoarthritis tend to
appear when women are in their 40s, a time of fluctuating or declining estrogen
levels. The relationship between estrogen and osteoarthritis isn't clear.
However, the hormone is believed to interfere with arachidonic acid, a substance
in the body that is associated with pain and inflammation. The researchers
suggest that a better understanding of estrogen's apparent protective effect on
the knee may lead to new approaches to osteoarthritis management.

Wow Amy thanks for your input. I never swell or retain fluids and after
reading this I wonder if it is not the pregnenolone. Swelling just started
in the last 2 days in my feet and I have only used pregnenolone for four or
five days. I never had anything with the DHEA or testosterone.
The reason I need estrogen is because 4 years ago I had a huge amount of fat
removed from my thighs and upper arms. They actually cut it of my legs. I am
pretty normal elsewhere but have always had these huge legs and it looked
like I had big biceps The next year is when I started with the bad flashes.
Otherwise I had lots of estrogen in the fat.
How do you do your hormones and do you think its better.. how, than the
cream??
Look into getting the book on adrenals and check out the web site for Future
Formulations.
Cooky
I'm getting ready to test my adrenals again (via cortisol test). If the
next test comes back crappy (which is what I expect) then I will start
something... again. I've tried Cortef and an adrenal extract ... I
thought the benefit was limited or negligible.
The Armour Thyroid (4 grains) has been tremendous support to adrenals,
as has progesterone and testosterone. Like you, if I don't take prog
and test, I feel more tired in a few days. It appears I have enough
estrogen, don't need estrogen. I take a super-duper tiny dose of
something with estrogen in it, as it seems to make the progesterone work
better.
I have a hard time with pregnenolone & DHEA as both will make me swell &
give me an edema type reaction. The theory is that somehow I'm getting
an estrogen reaction from these... but just a theory. I can take 1 mg
drop of each maybe once per week - but that's it. Even though I test
very low in both of those.
I started hormones, because apparently I just don't make them on my own.
Except for estrogen ... I test in the middle for estrogen. Thanks for
the recommendation for adrenal support. I've done the syringe bio's
that you describe, and now my hormone are still bio's, but not in
syringe. I'm using Dr. Lee sources for progesterone. I use 7 mg of
prog daily except when on period.
__

check it out
http://www.lowdosenaltrexone.org/ldn_and_ai.htm

Has anyone heard of this and know how to do it?
www.helenfoundationclinic.com.
Dr. Brown used small amounts of cortisone in the original antibiotic
protocol. This is tiny amounts whenever you think you need it. But you have to
go to a
seminar to learn how- and I live too far away. The book From Fatigued to
Fantastic also recommends low dose Cortef for a year for CFS patients. I've
heard
mixed results- for some it seems to be a miracle, others say they got even
worse.
Always looking for ways to improve my regimen-
Emma
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Does anyone know the answer to a question a friend of mine put to me today: "I
recently read that melatonin should not be taken by people with osteoarthritis,
or other chronic inflammations. Do you have any input regarding this?"
Thanks in advance.
Ellen

Hi Cookee - Yes, my RA did start almost exactly when I went into
menopause, so maybe it is hormonal or brain. However,I've noticed my
first improvement from minocin is my bowels. I got collagenous
colitis about 5 years after I developed RA and the minocin is helping
that. I'm taking 100 mg. two times a day on MWF. My mood is better
today, but now I'm spacey. When I first started AP I felt like a fog
had been lifted even though my physical symptoms didn't improve and
actually worsened, but now I feel like my brain is not engaged pretty
much....sort of like I'm about 80 years old and having minor
dementia! Anyway, I'm doing okay and very hopeful about the future
today......not euphoric...just hopeful. Thanks for your support.
Cindy

I read an online article, yesterday. Close to 24 million people have one of
these diseases, mostly women.
The article did talk about pesticides, micro organisms and other possible
causes. The conditions mentioned were: RA, SLE, MS. scleroderma, diabetes I,
and so on.
Bottom line of the article was the tremendous increase. A 30 year physician at
John Hopkins in Baltimore had approximately seven to eight Lupus patients. She
now has a much larger number (sorry, can't remember) from just a few streets in
the immediate neighborhood in addition to others from outside the area.
Denise
Pray the Rosary
www.bestdogcookies.com

Let us hope that the next president provides appropriate equipment, decent
lodgings, education, and good-quality immediate medical care. The way our
military has been treated and used is absolutely shameful. I will stop, in
disgust, frustration, and heartbreak for this country.
Denise
"...if by liberal they mean someone who looks ahead and not behind, someone who
welcomes new ideas without rigid reactions, someone who cares about the welfare
of the people...their health, their housing, their schools, their jobs, their
civil rights, their civil liberties...if that is what they mean by a "liberal"
then I am proud to be a liberal. John F. Kennedy
www.bestdogcookies.com

Hi Gang! Geoff here
This article will open your eyes and allow you to better make decisions when it
comes to Rx medications and your health. Be sure to read the doctor's comments
below the very short article. 5-min read
http://tinyurl.com/5wclmc
http://tinyurl.com/539mzf
Geoff

Hi all,
Australian naturopath here. Just had my latest consult with my
client. We are almost 2 months into the AP protocol. Despite a
significant family tradegy for my client she is doing remarkably
well. She has gone to 100mg minocin in the morning and in the
evening, three days a week just in the last week. We have been very
slow and cautious in raising the minocin level to minimise adverse
reaction which she certainly did experience. (Flares in all her old
trouble spots and injury sites). Things have settled down now, she
is sleeping better, waking once a night instead of 3+ times due to
pain and returning to sleep much quicker. Pain scores are down by
around 25%. She feels she is regaining some movement and flexibility
in her hands and feet, her physio is working very hard on her and she
is not experiencing pain in these sessions like before the AP
therapy. Usually her knees and feet are 8/10 pain, her hands 6/10
and arms 5/10. All these sites are now 5/10 pain. She expresses
feeling happy in herself which she has never really expressed before.
(Despite major family turmoil a month ago). She is still struggling
with physical fatigue and brain fog at the moment. Her gut is a bit
underactive with some constipation. I have increased her CoQ10 to 3
x 100mg/day and given her a tincture to support her adrenals, liver
and gut function. She continues on the probitoics, lactobacillus 299v
and acidophilus/bifidobacteria. Given that she is on oxyconodone
160mg x 3/day, we are looking forward to being a position where we
can start backing off on this pain medication as this wreaks havok
with her gut function. All in all going along nicely. Any ideas on
improving physical fatigue and brain fog most appreciated. Did I read
somehere Benadryl was good for this?
Kind regards,
Angela.

I just rejoined the group a few weeks ago, and a thread was ending that I
missed about Low Dose Naltrexone. Did anyone say they were doing it with the
Minocin? I'm thinking about it, but haven't heard of it being used along with
the
AP.
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Hi All - I haven't posted in awhile because I was delayed in starting
the AP. I started just about a month ago and no severe Herx yet, but
the mood swings are awful. At first I thought it wasn't related, but
now I'm beginning to wonder. I've gone from euphoria last week to the
darkest place this week. Anyone else have that happen? I have had an
increase in physical symptoms too, but not as bad as my moods.....my
family is about to get rid of me.
Thanks. Cindy S.

By DAVE COLLINS, Associated Press Writer/ Sat May 3, 12:13 AM ET
/
Patients who believe they suffer long-term problems from Lyme disease
are claiming victory over a national doctors group. The Infectious
Diseases Society of America has agreed to review its guidelines, which
say there's no evidence long-term antibiotics can cure "chronic Lyme"
disease --- or even that such a condition exists.
The agreement settles an unprecedented antitrust investigation by
Connecticut's attorney general over the matter. The doctors group makes
clear that current guidance for treating Lyme disease remains in place.
But that didn't stop claims of success by the attorney general and
people who believe they suffer long-term effects of the tick-borne disease.
"It's a great victory for patients," said Pat Smith, president of the
Lyme Disease Association, a national nonprofit group based in New
Jersey. "It's time that Lyme patients got the respect they deserve."
The agreement, announced Thursday, calls for the doctors group to form a
new panel of experts to review standards for treating Lyme disease. The
Infectious Diseases Society says it agreed to the deal in part because
the panel must be made up of doctors and scientists.
Lyme disease can be hard to diagnose with its vague, flu-like symptoms;
the most obvious sign is its trademark round red rash. Usually, it's
easily cured with a few weeks of antibiotics. Those not promptly treated
can develop arthritis, meningitis and other serious illnesses.
About 20,000 new cases of Lyme disease are reported every year, but
experts believe the annual total may be five times higher.
Connecticut leads the nation in reported cases and has been a
battleground in the national debate over treatment. Lyme disease is
named after the Connecticut town of Lyme, where the illness was first
discovered in 1975. And the state is home to a number of people who
claim they suffer long-term problems from Lyme disease --- problems that
many doctors are unable to confirm or treat.
The Infectious Diseases Society says it's never been proven whether
these patients still have Lyme disease or something else. The group
continues to defend its standards, which say short-term antibiotics are
effective for nearly all patients. Long-term antibiotics are unproven
and potentially dangerous, because overuse of the drugs can lead to
drug-resistant infections, the society says.
"We are confident that our guidelines for the diagnosis and treatment of
Lyme disease represent the best advice that medicine currently has to
offer ... and we look forward to the opportunity to put to rest any
questions about them," said Dr. Donald Poretz, the society's president.
The society will consider a variety of scientific evidence and determine
whether the 2006 guidelines are justified or need revision.
The guidelines are important because they discourage adequate treatment,
advocates of chronic Lyme sufferers say. Perhaps just as significant is
that insurance companies refuse to pay for long-term antibiotics to
treat chronic Lyme.
"We are delighted with this settlement," said Diane Blanchard of
Greenwich, who said she was sick with Lyme disease for 10 years before a
long-term antibiotic treatment relieved her symptoms in the late 1990s.
"The IDSA guidelines are now clouded by this decision. My greatest hope
is that patients will regain their right to treatment," said Blanchard,
now co-president of the advocacy group Time for Lyme.
Philadelphia-based health insurer Cigna Corp. said it is reviewing the
agreement to see if any changes in policies are needed. Cigna covers up
to 28 days of intravenous antibiotic therapy for Lyme disease and, like
many insurers, cites the Infectious Diseases Society's guidelines in its
coverage plan.
Cigna does not pay for "repeated or prolonged" courses of antibiotics,
saying they are "experimental, investigational or unproven."
Connecticut Attorney General Richard Blumenthal and advocates say the
agreement is the first time the medical establishment has bowed to the
pressure of a potential court fight and agreed to re-evaluate care
standards.
"My main goal all along has been a process that is fair, open and free
of conflicts of interest," Blumenthal said.
Blumenthal said his investigation found that some of the 14 experts who
approved the 2006 guidelines got consulting fees, research grants and
stock ownership from drug companies and other businesses that have a
stake in the treatment and diagnosis of Lyme disease.
He would not name the panel members or the companies. He said the
backgrounds of the new experts looking at the guidelines will be checked
for any potential conflicts.
The issue involves antitrust law, Blumenthal said, because the panel
excluded some opinions and evidence that may have supported other
treatments in development, including vaccines.
Blumenthal's office did not take a position on the proper treatment of
the disease or whether chronic Lyme disease exists.
The Infectious Diseases Society denied any conflict of interest.
"Panel members do not stand to profit from any recommendation in the
guidelines," the group said in statement. "In fact, the panel members
denied themselves and their colleagues an opportunity to generate a
significant amount of revenue when they recommended against expensive,
repeated, long-term antibiotic therapy."
___
On the Web:
Centers for Disease Control and Prevention:
http://www.cdc.gov/ncidod/dvbid/lyme/

Like Malcolm X said, "Show me a capitalist and I'll show you a
bloodsucker"

Hi Vicki,
Jeff makes a very good point...for something as serious as PN, one should
seek out several medical opinions to get a proper diagnosis. Having covered all
those corners, at least you will know what you're dealing with and more able to
make an informed choice as to what treatments you wish to pursue.
Having said that, it seems you have already covered a lot of corners,
deciding you aren't willing to go the conventional treatment route, and have a
bit of
the ol' "maverick" in you, wanting to be your own health advocate. Can't
blame you - while there are some fabulous doctors out there who are great
diagnositicians and treat the best they know how with the meds at their
disposal, they
don't always have all the answers. So, on the flipside, it's also true that
we can run around to any number of specialists and receive a number of
diagnoses based on each one's area of expertise! If for no other reason, being
proactive in your own health and road back to wellness should serve you very
well, so
you can at least decide for yourself.
Just including a few links that may help in your search....
Here is a link to some interesting video clips from a Lyme Conference. My
doc, Dr P (seventh down in the list), is speaking on the pleomorphic nature of
Bb
and its relationship to MS. You'll also find some interesting video clips of
talks by Garth Nicholson, Trevor Marshall and Lida Mattman...all experts in
the field of the "Infection Connection."
http://www.ctlymedisease.org/videoclips.htm
Columbia University is doing some fascinating research on the
neurodegenerative disorders associated with chronic Lyme.
http://www.columbia-lyme.org/
Chronic neurotoxins are also something you may find interesting to research:
http://www.neuraltherapy.com/NeurotoxinProtocol040406.pdf
These are only suggestions for you to research and do hope you find your
answers soon. If you're willing to travel as far as southwestern CT (about 90
mins
out of NYC) then I'd be happy to give you the contact info of my my LLMD
whose area of interest is in Lyme and its connection to "autoimmunity." Just
send
me an email with the subject header, "Lyme Doc." He may or may not be able to
help you, but if you're looking for a new LLMD, he's considered to be one of
the best in the US.
All the best to you in your seaches, Vicki.
Peace, Maz

Hi Gang! Geoff here. Long time - no post. For those of you interested, this
background on the AMA, JAMA, and the AMA Seal of Approval is very worth the time
invested.
http://www.alternet.org/healthwellness/81659?page=entire
Geoff

Lynne, I know you have responded to a couple of my posts over the past couple
months, but I do not recall - were you diagnosed with diffuse scleroderma as
well as myself, and had you had any internal organ involvement? Thanks Gail
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I was diagnosed in early February with Diffuse Systemic Scleroderma, as well
as Raynauds and Sjogrens. Had been to many many doctors over a period of 9 -
10 months before finding my answers in Boston. My question is, and I would
appreciate your input, is when you have esophagus involvement, like reflux,
difficulty swallowing, choking on water, etc. etc. does that necessarily mean
that
you are going to have severe organ involvement, or can you have the esophagus
trouble and not have other organs involved.
I have had a pretty bad sore throat for about three days, nothing I can
really pinpoint to a cold or anything, terrible, at some times relentless dry
cough, and today, all day it just seems like I cannot swallow properly and like
food is kind of "sliding" so to speak down my throat rather than being pushed
down - hope this is making some sense.
Appreciate anything anyone can tell me. Secondly, is this permanent, or if I
improve, will this part of the disease improve as well? Anthing anyone has
used or taken to ease some of the discomfort and made swallowing easier?
Thanks Gail
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Dear List
Thanks for all your help with the research
We have just launched a new web site which we think you might find of
interest
http://www.thepatientsvoice.org
A place for patients and carers - to help you make your opinions
count!
Please have a look and tell us what you think
Kind regards
Belinda

Terri,
Between my wife and me, we have had three arthroscopic knee surgeries
since 2005 (via three small holes through the skin). Surgery was only
performed after an MRI had found evidence of a meniscal tear. The
surgeries did wonders. Our operated knees no longer hurt. The hardest
part for me was to get the first MRI approved when I still had an
HMO. This is because insurance companies will try to minimize their
costs. They don't like MRIs because 1) they cost money, and 2) they
may justify a medical procedure.
If the cause of knee (or shoulder pain) is a tear, no amount of
antibiotics will fix the problem.
I don't see how arthroscopic meniscal surgery could aggravate a
rheumatic condition. It can only help. Part of the arthroscopic
process is to explore a joint from the inside and diagnose what is
wrong in the first place.
Sincerely, Harald

Hi Vicki,
like constant electrecutions that won't go away.<<<
Reading your post brought to mind an article entitled, "A Plague of Ignorance
Regarding The Ignorance of a Plague," authored by Dr Scott Taylor. I think
you might find it interesting in light of the symptoms you mention above. I've
cut an pasted the bit that seemed relevant to your question. Not saying Lyme is
your problem...it may or may not be...but just something that may help in
some way.
http://www.autoimmunityresearch.org/lyme-disease/
"Another interesting symptom often noticed is an increased susceptibility to
electrostatic shock. This is likely due to the BLPs causing a change in the
electro-potential in our cells/nervous system. Some of these toxins are likely
sodium channel agonists and can change the electrical potential of our body.
Thus, the likelihood of electro-static shock."
It's a very long article, but very worth the read, as there is much relevant
information to all our diseases. I've looked at many articles over the past
couple of years and this is one of the best and most informative to date, but
you'll need a good half hour to read and absorb.
Peace, Maz

I was taking 50 mg Minocin, pelletized. My mail order pharmacy told me recently
that Wyeth has discontinued making the 50 mg Minocin capsule (apparently they
stopped making this in 2005?) The pharmacy can get Triax brand, but only in 100
mg, not 50 mg (I sometimes have to take only a portion of the 50 mg Minocin
caps, so would hate to go to the 100 mg caps and have to try to portion out even
smaller doses, and with no standardization between doses)
They can get Global Pharm's minocycline, in 50 mg, but these are powdered caps,
not pelletized, and I am afraid that the action would therefore be different
than the pelletized Minocin (aren't the pellets some sort of time release? So a
powder would be immediately released, so the body would get an immediate 'hit'
from a powder cap that would not occur with the pellets?)
Does anyone know if the difference between powder and pelletized affects the
action of the mino in the body?
Is anyone familiar with Global Pharm's mino and how it compares to Minocin
pelletized? Thanks - Les

Hello,
I'm a new member. I have had Chronic Fatigue Syndrome for about
25 years, beginning with a bad case of mono from which I never fully
recovered. I am 45 years old. I live half way between Knoxville
and Chattanooga TN. USA. In the last four years, however, I have
begun to have more joint pain, stiffness, and redness. Almost all
my peripherial joints are now involved, but no spine and neck so
far. On testing, I show no RA or other autoimmune antibodies, and
no elevated C-reactive protein. These were just screenings by a
General Practioner though. I have not been to a Rheumatologist,
yet. I imagine they might be able to go a bit more indepth. Too, I
seem to have some sort of ill-defined mast cell disorder. I don't
think I have classic Mastocytosis, but a lesser form of something
likened unto that. Again, undiagnosed, however. So that's my
quick bio.
I was interested to see that the introductory e-mail from this
group contained many of the ideas I was wishing to pursue (i.e. I am
a patient of Dr. Ritchie Shoemaker already, and I am planning surgery
for possible osteomyelitis of the jaw and mandible. I've already had
this once, in fact).
I was wondering though, a friend came across something
interesting lately. I thought someone here might know more about
it? It is peptide injections for RA, and various other conditions
too, by a Dr. Dakos. I've never heard of this before, and didn't
know what to make of it. Here is the link:
http://www.autoimmunedoctor.com/index.html He is in Florida.
Anyone know anything about this? Is this for real, or what?
Also, if anyone knows of a Dr. near Chattanooga or Knoxville TN,
who would be willing to work with me
on antibiotic therapy, that would help me a lot?
Thanks,
Todd in TN.

Hi Beverly,
I can equate with how you're feeling, as well. I came down with Lyme Disease
over Labor Day weekend in '06 and within two months had a diagnoses of swift
onset, very severe RA. Sometimes infections cause the body to react in this way
and a genetic proclivity is usually in the mix. However, the good news is
that longterm antibiotic therapy works!
Your UTI is a great connection. Do a search online for the work of a guy
called, Ebringer, who has studied this connection. He believes proteus mirabilis
is a trigger for RA and other rheumatoid diseases. Also, try and get a copy of
"The New Arthritis Breakthrough" by Henry Scammell. It includes the life's
work of Dr McPherson-Brown who treated 10,000 patients with longterm antibotic
therapy for their rheumatoid disease very successfully. Very easy read and will
explain all you need to know about infectious theory and antibiotic therapy to
get started. If you are looking for an AP (antibiotic protocol) doctor, ask
here or go to roadback.org and their bulletin board where you'll find
instructions on how to email the volunteers to get a listing for your area.
Wishing you well in your searches and hang in there. When we're sick and
frightened, it's not easy to be our own health-advocate, but it sounds like
you're
already well on your way just by finding this site!
Peace, Maz

Hello, I am new to the group. My name is Beverly. I just turned 40
years old this month.
The reason i am here is because I had some bloodwork done and the
nurse practioner at my dr's office called to tell me that my blood work
showed that i had MCTD. I had not ever heard of this before and she
described to me as a combination of scleroderma, Lupus and another
disease. I was very shocked when i got off the phone and even more so
when i read about it.
She reffered me to a Rheumatologist but i cant get in to see her until
may 7th. My mind is running rampant and i am just so scared!
I had gone to the office to get a copy of my blood test results. By
what i see is that the "ANA w/ reflex if positive antinuclear
antibodies direct" were HIGH (236. Below that it says RNP antibodies
were high (236). There are alot other initials but none other marked as
high. Below this is it says aunto antibody and disease association. It
has percentages catagory, condition catagory. It also said my
sedimentation rate-westergren was high (26). My vitamin b12 was low at
190.
The reason that i went to the dr was because about a month and halg ago
i was having symptoms of a UTI. The dr's office called me out Cipro.
By the 3rd doseof Cipro i could barely get out of bed. My muscles,
joints and body hurt all over! I called the dr exchange on a sunday and
the dr on call said to stop taking the cipro that i was having a
reaction to it. Ok, so i went in to the dr that Monday and the swelling
was still visible in my hands and ankles and face. I was also sooo
exhausted feeling.
The nurse practictioner sent me home with another antibiotic
(macrodantin). I didnt take it as i was scared i would have another
raction. A week or so later, i was still having symptoms, swelling,
body aches, joint pain, muscle tenderness. I had told her that my dad
had RA and could i have this? She ordered blood work and called a few
days alter to tell me the RA was negative but that i tested positve for
MCTD and that i needed to see a specialist.
Prior to the UTI there was flu/virus's going around my family. Body
aches, fever, fatigue. I had it pretty bad but it did get better. I
didnt think anything about it as my husband and daughters also had it.
I am just beside myself. I just dont know what to think. Do i have a
terminal disease? Am i going to die? I dont know what to do!?
I know my first course of action if the rhuematologist. But,in the
meantime these 2 weeks of waiting is soooo hard.
Any helps would be soooooo appreciated! Sorry so long!
Beverly

I sent you a message but haven't heard back from you! Check out my page and send
me a line:
http://purevizhunn.tripod.com/AboutMe.htm

I was going to get a breast enhancement, I was wondering if this was
safe?

As a newbie I can only guess based on what I've read about it.
I particularly like the information and studies regarding Lyme
disease, as it also causes RA and it's proven. So I can take those
studies and apply them to Mr Perfect.
The primary problem is the quiescence phase in the replication of the
bacterium, and it's long life cycle.
Absolutely none of the antibiotics, nor the bodies own immune system
actually kills the mycoplasma bacteria. What they can do though, is
prevent the bacteria from multipying until it eventually dies. The
specific antibiotics used do this by preventing RNA replication.
However, all the mycoplasma has to do to circumvent the treatment is
to go into hibernation (it's quiescence stage) and wait it out. And
it can wait for many years.
Stopping the treatment allows the bacteria to begin replicting once
it wakes up, and you have to start all over again. That is why it
appears that the antibiotics have to be taken forever. Or at least
for as long as the bacterium can hibernate. There are no studies that
I have found that indicate exactly how long that is ... other than
years.
Blessings

Hi guys,
I haven't written in a while, but I am still doing well. Almost ten years
strong on mino. I am going to try doryx because of some hyperpigmentation, but
beyond that I am doing quite well. Keep your fingers crossed for me. I hope
this quick note serves as inspiration for those who are just starting.
On a seperate note - I may be looking for a new rheumy. I am currently seeing
Dr. K in Arlington VA. Sometimes people including doctors are only meant to be
in your life for a season. Any suggestions would be great. I prefer someone in
the heart of DC but nearby DC would be great also. Thanks!

My name is Sheri Green and I was diagnoised with mixed connective
tissue disorder in my early twenties. I don't know why i got this
disease but I have it I really don't have any support, I'm married but
he's no help he's just concerned with himself. I don't know if i'm on
the right medication or if there is something else out there that can
help me. I live in Richmond Va. and I am 32 now too young to be dealing
with this shit excuse my langauge but this has been a bitch to deal
with. I'm angry, I'm tired and I work alot I have lost alot of weight I
don't feel good I need some help I am desperate.
Thank You
Sheri Green

Hi Jeff....my research doc is a woman...I know that she is very well known
around the USA for her research with scleroderma/lupus. I really don't know how
to answer your question. I have been seeing her for 6+ years and if I remember
(short term memory) she doesn't know why AP works for some and not others. And
who really knows why I did get somewhat better.....I have alot of deformity,
etc.
Susan

* * * * * * * * * * * * * * * * * * * * * * * * * * *
MYCOPLASMA REGISTRY REPORTS
for gulf war syndrome & chronic fatigue syndrome
© 2008 Sean Dudley & Leslee Dudley. All rights reserved.

Hi Lynne
I noticed that you said that you've never been able to get your candida under
control even
with Diflucan. I'm in the middle of a blow-out yeast/candida effect. I've had
nystatin for
about 15 years and that, with strict diet, usually keeps it under control. But
recently in a
time of stress, I ate a couple of pieces of organic dark chocolate each night
for about a
week and am astounded at the candida symptoms that have followed.
Ten days ago I asked my dr about Diflucan but he was reluctant to use it because
of
potential liver problems. He gave me the script but I haven't filled it because
I'm worried
about side effects such as nausea (I'm unable to function when I have it) and
dizziness. In
your experience (or anyone else's) do these lessen over time? Doc said to have
200mg for
ten days and cut down on the mino. I was having 100mg every day and that did a
fabulous
anti-inflammatory job but am now pulsing MWF until the candida is under control.
I guess I'm still drawn to trying Diflucan but can't afford the time out if I
become non-
functional on it (like you I have a business to run). I've seen that some people
do really
well on it but others have terrible side-effects. I have doubled my normal dose
of nystatin
and probiotics and the bowel symptoms have improved but the mouth thrush,
headaches,
allergy eyes and sinuses are still in full swing.
Any advice or words of encouragement would be welcome from anyone.
Ros

http://drcranton.com/elimination_diet.htm
Hi Monique,here is the diet I am on for yeast. Lynne

when i first got the methetrexate I asked the pharmacist about it and he said
"some people cant live without it and some people cant live with it" I think
that about sums it up. But it does knock out the immune system so if you have a
mycoplasma infection (or any infection) and it lowers your immune system, then
you are open to more trouble. (as in my case) Kathy

Hi, Emma!
Well, it is encouraging to hear about others using the treatment and
having success!
Sorry for my double-posting! Apparently I am not receiving all of my
emails right now. I thought my message had bounced, but after
checking the rheumatic website, I see it didn't.
Blessings!
Terri

Hi! I'm Terri, and I'm new to the group. I just started a therapy protocol
of minocycline and azithromycen for a diagnosis of RA, Psoriatic Arthritis,
and Fibromyalgia. The first week, I got progressively better. After that,
I slid into what I assume was a Herxheimer reaction where I was much worse
for several weeks. I have finally gotten back to square one, and now I am
waiting to improve.
I notice Ken said he thought Minocin was better, and I asked my doc who
didn't seem to care the pharmacy filled my Rx with the offbrand. Is it
possible to get Minocin anymore? Should I insist?
Can anyone tell me how long it takes to start seeing improvement on the
antibiotics? I was diagnosed with Psoriatic about 12 years ago. I treated
it occasionally with Motrin and Sulfasalizine, but I was pregnant most of
those years. (Yes, I meant that -I have eight children. LOL)
Anyway, about two years ago, I was so miserable, I finally went back to a
rheumatologist who diagnosed the RA and fibro. Joy. All the docs have
wanted me to take methotrexate or more, but because I am still in
child-bearing years, I haven't wanted to go that route. I was thrilled to
find this alternative and a doc who would prescribe it, but I would love to
be encouraged by others following the same plan.
Blessings!
Terri
I will still take Minocin which

I used Bellview Pharmacy, they did a questionaire and then a phone consult and
they wrote up a prescription and info sheet type thing, they emailed that to
me and i took it with me to my Drs. and no my regualr Drs would NOt sign it,
but thru asking around I found an open minded Dr who DID sign it and then I
faxed it back to bellview (compounding pharmacy) and they filled the
prescription and mailed it to me. I am now switiching most of my records to the
new DR and she also said she was more than willing to sign for the minocycline
also...yeah! Kathy

How are you? Fine I hope.
Yesterday, I began my Methotrexate, 7.5 mg weekly by tablet. I woke
early during the RA flairing period of 2-4 am, except I wasn't
aching. It was as though the MTX interrupted the inflammation process
as it does. I have had a swollen left knee for far too long and a
sore tendon connected to it. In addition, I would like the golf ball
on my left ankle to subside. Coincidentally, I went for an MRI scan
to take images of a suspected ruptured tenon which was attached to my
thumb. Hopefully, a surgoen will reconnect this to my thumb, (Note to
self- consult an atlas of the body). I will still take Minocin which
I have been doing for 3 years and all was well on this protocol
until, Minocin, the brand name, taken off the market and I found, I
feel, that the generics, I took were less efficacious and my blood
tests reflect that, all indicating higher inflammation again. Someone
said that nowI am back on the Minocin, it could take 6 months for my
ESR levels to come back to normal.
Please could you share what the first days and weeks after first
taking MTX were like.
Thank you so much.
Ken.

Does raw chocolate - like cocoa powder, without any additives -
increase arthritis pain? I have read that chocolate can increase pain,
but did not know if this was referring to chocolate candy, or some
natural chemical that is found in the raw form of chocolate (and which
chemical is that, and does it occur in other foods?)
Has anyone found that non-gluten grains increase pain?(as in quinoa,
millet, etc - not grains that have been processed)
Thank you for your input-Les

I finally have located a doctor in our remote area who said he will
prescribe AP. I have had RA for nearly 20 years and will turn 40
this year. I have excessive deformity (both ankles, curled hands,
extremely painful hip that probably needs replaced), but a strong
will. Other than RA, which is a biggie, my health is good.
I refuse to think that it's too late for me, though that thought
tickles the back of my mind regularly. I have three children
aged 5-11 who need their mommy and a husband of 15 years who never
complains but would, I'm sure, enjoy a healthier wife. I've been
able to function and mostly ignore the pain until the last year or
so. I'm ready to take care of myself.
Blah blah blah. Enough of that and onto my questions:
I've taken lots of prednisone and am pretty certain I already
struggle with Candida. I began taking digestive enzymes along with
supplements to repair leaky gut (L-Glutamine, Olive Leaf Extract &
Slippery Elm) along with a multi-vitamin & extra vit. C to ramp up my
immune system. I haven't begun probiotics.
1. How imperative is it that I have Candida & Leaky Gut under
control before I begin AP?
2. How will I know if Candida and Leaky Gut are under control?
The arthritis is in a constant flare right now and moving into my
upper spine, which frightens me. Spinal involvement means eventual
paralysis in my mind. My point: I don't want to wait much longer.
I started AP six or seven years ago, then stopped & had baby number
three...before most of this deformity. Baby was born with a brain
defect and special needs. I tell this only to explain why I've
waited this long, realizing now that I should have re-started AP
immediately. Hindsight is 20/20 and all that.
My doctor wants me to take doxy instead of Minocin, saying that it
remains in the system longer and therefore can kill more of the
buggers. Observing my body as I've taken enzymes, it seems as though
my body needs ample opportunity to detox. With that in mind...
3. Would you recommend Minocin or doxy?
4. Am I understanding the difference correctly: that the Minocin
dose loses it's potency more quickly than the doxy dose?
My appointment is April 25, at which I expect to receive the AP
prescription.
5. Do you have any suggestions as to what else I can do in the next
two weeks to be ready?
A month or two ago I read a thread on this group about hormone
imbalance. I have also addressed that and am enjoying those
improvements.
Thanks in advance for your time,
Angela S. --not the same Angela who has been posting recently :)

Thanks for the update Angela,
The results are encouraging and your client is lucky to have you on her side.
What I want to know is why many people on the AP get relief for a period of
time, say several years, and then find that the RA returns full force ? If the
AP was any good, this wouldn't happen. They then have to take
different/stronger antibiotics. It seems that the AP is not a cure, but a
measure to control the mycoplasma or inflammation, which I'm not saying is a bad
thing, but why do the effects wane in the long term ? Of course, any relief for
any period of time is of great value, but it makes me doubt it's true
effectiveness - is it just another drug like the DMARDS ? I realise that
auto-immune conditions are not diseases that just go away, and that any sort of
therapy to bring relief is better than nothing - it's an awful disease. It's
just that I am feeling uncertain about antibiotics and am stalling on taking my
prescription. It's not that I have much choice anyway - the disease is taking
it's toll on me and I'm not getting any better when left to my own devices. I
am so worried that antibiotics will cause more damage to me than good - don't
they say that many illnesses result from the use of antibiotics ? How can AP be
of any good to me then ? I guess if I do all the right things like take
pro-biotics and supps etc, I can counter the side effects. I know all these
things and have mulled it around in my head endlessly, but it's hard to take the
leap of faith and give it a go.
Thanks for listening...
Leonie